Taking It In Stride

Still Here :)

2012-01-12T12:21:00.000-05:00

Thanks peeps, forcontinuing to visit ~~my little horror story~~ even though I really don’t updatemuch anymore. I found it helpful to write about what was happening and Ilearned a ton in the process, but then the time came to move on.

So I did. Life slowly went back to normal, and this horrible mess has become nothing but a bump in theroad, just like I had been hoping it would when things were still all weird and totally unpredictable. A significant bump for sure, but it didn’t take over my life, atleast not in the long run. And for that I am grateful.

I continue to haveregular check-ups with my neurosurgeon and feel like a seasoned professional indealing with his ~~bitch~~ secretary. She continues to mess up the setting of theappointments and schedules me for random MRIs, but it doesn’t freak me outanymore. I know that when I get to see the doctor, he’s more interested intalking shop with the Fellows he is teaching than answering my questions. I’mgood with that now, too.

He gave me my lifeback and he’s there in case I need him again, something that becomes less andless likely as time goes on, though he’s keeping an eye on things just in case.Intervals between appointments are increasing – 15 months last time, 18 months now.After that, likely every 2 years, and eventually maybe only every 5 years. It’sa long-term thing, but I’m no longer freaked out because of it. Last time Iwent to see him just a couple of days ago, I didn’t even get sweaty palmsanymore and finally saw the humour in his not so patient-centred behavior. Theonly thing that hasn’t changed is the big wave of relief and the ensuingnatural high that washes over me and lasts for days when he tells me, again,that “there is no evidence of recurrence!” and gives me one of his rare smiles.

Life is good.

You’re probablyhere because you’ve just been given the same or a similar diagnosis or aresomewhere in the midst of the craziness surrounding diagnosis, treatment andrecovery. Or maybe you’re here because you know someone who is.

Good luck, I hopeit works out for you!

Finally!

2010-10-04T10:14:00.000-04:00

So. I got to see the Big Cheese himself, at my appointment last week. Months after my MRI of course with an additional delay occurring at the last minute when his secretary had to re-schedule my long-awaited appointment from a week earlier.

But indeed, it’s all good. Not that I didn’t know already, but somehow it’s still nice to hear it in person from the man who should really know best.

One of his ~~little minions~~ Neurosurgery Fellows gave me the once over, very much reminiscent of what that they did back in the summer of 2008 after that lovely neurologist had referred me on to get fixed up. To be honest, that was a bit odd, but not enough to freak me out. Nothing really significant happened – he once again failed to charm me with his utter lack or disregard for personal/social skills and his disinterest (disdain?) for anything not 120% related to my medical situation.

While he asked me a battery of questions once the ~~minion~~ Neurosurgery Fellow had found him and dragged him into the room to sign off on me for this time around, he quite clearly wasn’t interested in a funny little story about my 3 year old who likes to get out his little toy tools in an effort to fix the one visible dent that has appeared on my forehead. And I understand that one’s own children are always cuter than anyone else’s and didn’t really expect much in terms of a response, but since we had just discussed the fact that it is quite rare to have another dent appear so late in the game, I thought he might appreciate it. But not so much, as his decidedly un-amused response was, “Tell him to become a plastic surgeon, then he can fix it!” And not with a smile on his face, but rather impatiently and dead serious. Quite clearly, he knows nothing about 3 year old boys who dream of nothing but driving a digger and working in construction all day and all night....

Anyway.

He thinks it’s time to start slowing down the MRIs, so I can now wait for 15 months rather than 12. That’s fine with me, though I’m glad he didn’t stop them entirely. Having someone check up on my head has become something of a little security blanket for me, so I’m not sure how I’d have reacted had he told me that I was done. Because it’s not like he’s giving me a guarantee that nothing is ever going to happen again – he mentioned again that there still is a chance of recurrence, albeit somewhat less likely at this stage.

The most interesting part was when he explained to the ~~minion~~ Neurosurgery Fellow why he didn’t do it endoscopically – whereas before he’d only ever said to me that the meningioma was too big and an approach through my nose was not possible, he showed him bits that would have been hard to reach that way and that because I’m still young a craniotomy was a better option so they could hopefully get it all.

In spite of the utter lack of any warm and fuzzy personality traits, I think I liked him better this year. Maybe because I was less freaked out, or maybe he actually was nicer because I hadn’t come prepared with a list of pesky questions for him or complained of headaches? Or who knows, maybe he’d just slept better the night before – but whatever, I won’t really have to think about him much anymore for another year, and that’s quite something.

I am not sure I’ll have much to update on this blog until then, so those who are coming here for meningioma info, check out the archives on the sidebar. Most of what happened is all there, minus many details on how crazy the first weeks post-craniotomy really were, because of the dexamethasone, but also because the brain had been all screwed up and needed some time to re-orient. Good luck with your own situation, I hope it works out for you/your loved one as well as it did for me!

And for those of you still coming here to read up on the kids’ bilingualism, all that has long ago moved over to intrepidlybilingual.blogspot.com. See you there :)

Thanks for reading, everyone!

Cheers!

Going On Two Years

2010-08-16T15:38:00.000-04:00

I'm coming up on my second anniversary of my craniotomy, and it's a much nicer ride than this time last year. For example, I completely missed the anniversary of my diagnosis (August 13th, if you must know) and just came across it today when I found it scrawled into my agenda. Last year, I still thought about it all much more and was so much more caught up in getting over everything, that I was always acutely aware of anything somehow related to getting diagnosed.

This time around?
Not so much.

I know that next week is the anniversary of the 10 hour surgery that got rid off that meningioma, but I'm not at all freaked out. The only reason I know it's coming up, aside from having noticed that my diagnosis day just slipped by, is that I'm counting the days until we go on vacation and have known since we booked this vacation that my craniotomy date of 2008 falls right in the midst of it.

It's a good place to be.

As Good As Official, I Hope!

2010-07-19T15:37:00.000-04:00

Here it is, the good news from my latest MRI report, which the hospital gave me, even though I haven't yet had my appointment with the big cheese to get the results in person. I'm glad they did, but you'd almost hope that if there are bad things in there, they wouldn't just leave you to find this out from something written entirely in medicalese....

Anyway. Here it is:

MRI OF THE BRAIN:

COMPARISON STUDY:
November 5, 2008

CLINICAL HISTORY:
Frontal meningioma.

PROTOCOL:
Multiplanar, multisequence MR Images of the brain including post-gadolinium contrast.

FINDINGS:
There has been a previous frontal craniotomy with resection of a large meningioma within the midline bi-frontal region. There has been mild interval increase in the mild encephalomalacia and gliosis within the bilateral frontal lobes, slightly more on the left. There is enhancement of the dura within the bi-frontal regions, as well as the falx and frontal sinuses in keeping with post-surgical changes. No discreete mass is seen in this region. No definite evidence of recurrence.

The remainder of the examination is stable and unchanged compared to the previous study.

OPINION:
Post-surgical changes within the bi-frontal regions, without definite evidence of residual tumour.

==========

Wooo hooooo! Although it is exactly what it said last time, word for word. Let's just hope the radiologist picked the right template :)

But anyway, from there to here sure feels great!

Still Good :)

2010-07-04T21:10:00.000-04:00

I'm still here, on vacation for a bit of ~~chasing kids around~~ a break and won't get to see the good doctor for my official MRI results until the end of September. Yes, you read that right, the end of September! That is a month longer than last time around! And yes, it has everything to do with his secretary who initially didn't phone me back (as usual) and then scheduled me exactly during the one week in August I had specifically told her I'm completely and utterly unavailable this summer. By the time she got around to fixing that little erm.... misunderstanding, he was fully booked for another 3 weeks or so.

But anyway.

I'm not even freaked out. Maybe because she seems to have gotten herself a bunch of medical degrees since last I had the pleasure of speaking with her and told me, on our answering machine, that everything was clear so I didn't have to worry? Or, more like it since I don't believe a word she says, I'm going with my gut feeling that says since I'm feeling fine, everything must be fine?

Either way, I'm not all that nervous about having to wait that long, though I suspect I will be the day I have to actually go and see the good doctor.

I made it through the MRI unharmed, ie without drugs (well, unless you want to be picky about it and count the homeopathic pill I took that may have calmed me down a wee bit) and without too many ill effects. There was a tense moment when they first put me into the thing, but once that was over, I was fine. For the first time, I noticed how much noise these things actually make. I mean I had noticed the sounds before, but I was always too freaked out to be bothered by the noise. This time I wasn't freaked out, so the noise made the whole thing a bit of pain. Funny how things change, but good, ever so good!

So yeah, things are still looking up, way up! But I haven't forgotten the misery for the first few months after surgery (or the misery in the last few years leading up to diagnosis!), so I feel happy. And lucky. Very lucky not just to be alive, but very lucky to have my life back. Every now and again I think back to how I was convinced I was about to die or end up in some sort of institution, I remember the images I had of me being dead and my husband walking away from me with our two little kids by his side, that and so many other horrible memories of the first few months post-craniotomy - and then I sit back and count my blessings.

Life is good.

Things Are Good

2010-06-09T15:06:00.000-04:00

Normal, really, since I haven't had another moment of horror about what has happened in months now. Probably one of the reasons I am ~~kind of~~ neglecting this blog. Sorry about that - and I know it's about time I added something new.

So how abut this?

I'm having another MRI. Tommorrow afternoon. 4:30 local time.
Wish me luck!

I'm doing it drug-free, something I didn't think possible last time around. Yet another sign of how much more normal everything has become again. It's nice.

I heard back from the nice oncologist in charge of the focus group, and participated in two more rounds of study. Not nearly as exciting as the actual focus group as it was just a chance to try different versions of the questionnaire they are designing to find out just how skull-based surgery impacts your life and provide some feedback - but another sign of normal was that when he contacted me to see if I was interested, I didn't almost have a nervous breakdown. Unlike last time.

Same yesterday. When the hospital phoned me to remind me of tomorrow's MRI, I managed to talk to them calmly and didn't almost loose my dinner. Which, you know, almost happened once before.

It's all good.

The thing that hasn't changed is the cow that is Dr. Hotshot's receptionist. She still doesn't seem to think that returning people's voice mails and actually scheduling for a follow-up appointment to see the good doctor and to get their MRI results are part of her job duties. She still bothers me, and probably always will. She caused us so much grief when we were struggling with everyhing early on that I don't think I'll ever understand why she is the first person of contact in an office such as his, or anywhere, really. But whatever. I know she doesn't care that I'll have to wait forever again before I'll get to see him (calling me back weeks ago really would have been too easy, especially since that would have meant I'd get to see him a little closer to my actual MRI date), so I will just keep calling her back. One of these days she will answer her phone. Right? She must. I know she will, 'cause it has happened in the past.

Otherwise, life is good. And normal, which, more than anything, is exactly where I want to be right now.

It's A Good Sign, I Think

2010-03-11T10:35:00.003-05:00

It’s been a few days now, a week almost, and my mind still boggles.

The kidlets, now almost 3 and almost 5, had a rough time with this whole meningioma mess, given that I was pretty much out of commission for a while and on top of it, they ended up getting shipped off to their grandparents for that first horrible month post-craniotomy.

The older one went back to normal pretty quickly after things had returned to a more normal state at home, but it was the little one, barely one year old at the time, who had a hard time with it. It took him more than a year before he felt pretty comfortable around me at least most of the time and allowing his grandmother, the one person who looked after him most in the time immediately after my surgery, to even look at him, let alone speak to him or touch him. Given his age at the time this all happened, this is not surprising – after all, he couldn’t express himself all that well yet, what with him obsessively shouting “Gack... gack, gack, gack!! Gack ... gaaaack!” at the time, and not having the cognitive abilities to really understand what was going on.

Or so we thought.

‘Cause the other day, during a diaper change, he said to me,

“You were sick, Mama! You had something in your head!”

I almost keeled over.

I haven’t been sick recently, haven’t even had a headache for the last few months or anything worse than a little cold, so we’re pretty sure he was talking about that horrible summer of 2008. But is this really possible? He had turned 1 mere days before I was diagnosed and it’s been 18 months since I had surgery. Can he remember that far back? Did he understand what was going on or is he able to piece things together now, now at almost 3? It’s not like we talk about meningiomas and craniotomies constantly. And it’s not like we’ve had to make permanent changes to accommodate any deficits or anything. We’ve gone back to living our lives pretty much like we would have had this mess never happened to us.

So I don’t know.

Part of me, a big part of me, thinks that he really was talking about me having been sick and that he’s just taken another big step in his own recovery process. After all, this was rough on all of us, but maybe particularly him. Nursing had to come to a rather abrupt halt since I was put on meds. I spent my days in a dark and quiet room, constantly having bad headaches and oftentimes didn’t even have the energy to eat with the rest of the family, let alone play with the kids. He had to “take a vacation” in the country side at his grandparents’ house and, of course, wouldn’t have understood any of it. Yes, he had his sister with him, but still – it was hard enough for her to understand (at just 3 years old), so I can’t even imagine what the little guy had to go through. It wouldn’t be surprising for him to still feel a bit out of whack about it all – but to say something so clearly??

However, even though we’d been thinking that everything was back to normal with him, over the last couple of weeks he’s clearly become much more attached to me. I’m a bit worried about always connecting everything back to the meningioma, and decided to just be happy about it, without trying to read anything into it. But maybe I should – maybe something was still amiss and he’s just taken another big step? His behaviour toward me has changed in subtle, yet noticeable ways, all of them good, and he is older now and much better at articulating what’s going on. So yes, maybe he is still getting over it – it’s not like I never think about it anymore either, or get freaked out by it, so it makes sense that those closest to me are also still grappling with it.

His sister also still asks questions about it, though with decreasing frequency. She had become more attached to me through all of this, and for the first few months after surgery never left me alone anymore and developed into a little stalker. Pretty quickly, however, things went back to normal for her. So whenever the topic came up, she’s been happy enough to make fun of the big meatball she thought had grown in my head and give me pretend MRIs – and then went back to doing whatever she was doing.

The other day though, we The Husband and I were talking about the little Punk’s comment, it got her thinking about it all again, too. And this time, it was different. She asked much more serious questions and really wanted to know what had happened.

So.

Now she knows that they cut a hole in my head, and not just a little one, but actually took out my entire forehead. That they put their instruments in there and cut out the brain tumour (as opposed to the meatball). She asked for my doctor’s name. And then I let her touch some of the screws you can feel through my scalp. She didn’t get obviously freaked out by any of this, rather was quite interested in the whole thing. It became clear, however, that she’s still quite relieved it’s over as at the end of this little dinner table conversation, she gave me a big hug and said that she’s so happy to be living with us again.

I’m still blown away by both of them. They are so young and should not ever really have to know about this sort of thing, at least not from so close, but here they are, still dealing with it all more than 18 months later.

I love my kids. And I hope, hope, that they are okay!

Erm

2010-01-18T09:19:00.001-05:00

So why the heck am I getting a second dent now? Now, almost 17 months after my craniotomy and 12 months after the first one appeared???

It's not that I mind them, 'cause I really don't. To me, they are a very real and to some extent even welcome sign of the mess I've been in, and of how much better I am now. I often catch myself touching them or rubbing them, trying to explore with my fingers what I can't see with my eyes since the old one is on top of my head and the new one on the right side, both covered by hair and just not in spots you can easily see yourself.

Yet it's disheartening to have another one show up now, so long after surgery.

Okay, I'm done whining. Now please go and help someone who really needs help. Try here if you don't know where to go.

The Year That Was

2010-01-08T12:39:00.001-05:00

I know one is supposed to update one’s blog more than say once in three months. I know this. But is seems like I got to the one year anniversary of my craniotomy, and life moved on without all things meningioma constantly on my mind. Thanks to those who emailed to see whether everything was alright – it is! I guess I was just enjoying having other priorities and a normal life, although for some reason I spent an unhealthy amount of time feeling guilty for having made it to the other side without too much long-term or permanent wear and tear. Unlike many others I've come across on various meningioma-related websites, mailing lists and blogs.

However.

It’s a nice feeling, realizing that you no longer think constantly about this horrible mess that happened to you and that you no longer feel like you’re constantly looking over your shoulder, waiting for the friggin’ thing to re-grow or some other horrible thing to happen.

This is not what things were like at the beginning of last year, that’s for sure. Back then, I had just returned to work a few weeks earlier and had just passed the 4 months mark past surgery. I still wasn’t really sleeping through the night, got frazzled easily and wore my emotions on my sleeve, and seemingly never got a moment in which the meningioma and the at least partly drug-induced craziness following surgery was far from my mind. The top of my head was till pretty much completely numb, biding its time while the nerves were taking their sweet time reconnecting and letting me feel things again. But I had more energy than I’d had in years, still to the point of pacing rather than doing something calm and relaxing that I used to enjoy pre-surgery, but still, it was such a change from the no energy pre-surgery me that I was enjoying even that. I was also pain-free, something that cannot be under-estimated in terms of quality of life. All in all, it was an exciting start to the year, however fragile the line between happy and freaked out still was.

Things improved as the year went on. I eventually was able to sleep through the night again. My energy levels went from frantic to what was normal for me before I ever began to be affected by the meningioma. I began to obsess about deficits, something I no longer spend a lot of time on. Yes, I can’t smell and sometimes it bothers me (a lot), and yes I have a bald spot – but mainly I’m back to living my life in a way that is probably very similar to how I would have had I never gotten sick. Most importantly, my kids have made it through this mess okay. I cheered the first time I actually forgot one of my monthly surgery ‘anniversaries’ – such a relief to not have all things meningioma front and centre for once! Things were going back to normal, for sure. So much so that I tried, albeit unsuccessfully, to ignore my very first craniotomy anniversary.

Just like everyone else who’s ever had a craniotomy, I also got a dent on my head at some point last year. Not exactly on the scar, but in its vicinity. I still don’t know why this happens, and have heard various theories around it, with the most common being that it's due to muscles having been damaged or contracted. It doesn’t hurt and seems to be a normal development, so it’s almost like the secret handshake that firmly puts you into the post brain surgery world.

Early recovery was nerve-wrecking, exciting, and slow, very slow – but over the course of the year, the immediate physical and raw emotional aspects started to be replaced by the returning feeling of normalcy. It’s not that I’m feeling 100% normal all the time and never think about this mess anymore. I do and sometimes also worry about future MRIs, but it’s become just one part of my whole life and is no longer that over-arching shadow I can’t get out of. I also still get unpleasant and unexpected reminders that emotionally I’m not entirely past this, but overall, I’m back to living my life. My life that happens to include a meningioma, not my meningioma-ridden life. This was, of course, helped along by having a clear MRI and a very uneventful appointment with my Dr. Hotshot, but probably also by the mere passage of time.

It took a while for us to get back to being the tight little family unit we were before this begun, and especially our little one had problems. But now things are pretty much perfect with us – our eldest sometimes still talks about the time she spent with the grandparents when “Mama was... you know, when she had that meatball in her head”, but matter-of-factly, not upset or freaked out. She seems to have retained some fond memories of the time she spent with her cousins during that time and continues to be much closer with her grandmother than she was before. She’s no longer scared that I might not come back to pick her up from daycare one day and is doing well in JK. The little one no longer is upset when I look after him rather than Papa, and finally got over his reluctance to spend any time at all at his grandparents. He spent the better part of 2009 being scared every time we went to visit them and wouldn’t let his grandmother, the person who cared for him the most in that first horrible month after my surgery, come near him or even look at him. Yet when we went this past Christmas, he was perfectly fine there and no longer cried or came running every time she came near him or tried to talk to him. A return to normal relationships for him, and this, more than anything, makes me happy.

The one thing that I still do think about a lot because I notice it on a daily basis is that my memory is definitely not what it used to be. It started out with word finding issues. Not severe enough to really cause problems, but noticeable to me. That seems to have gotten better recently, but it also has been replaced with not remembering people’s names. Not my friends, family and co-workers, but names of authors I like, news anchors, actors, more distant acquaintances, etc. According to the nice oncologist who facilitated the quality of life focus group in which I participated to help big fancy hospital sort out what exactly happens after skull-base tumours are removed, I am not yet old enough for this to be the normal effects of aging. My hope is that since the word finding troubles seem to be gone, the name finding issues will also resolve themselves. On a similar note, I spent the better part of the year having weird very quick-onset headaches. Sharp shooting pains that never lasted for long, but still brought back reminders of the time immediately prior to diagnosis and then surgery. Fear of recurrence, as well – but these days they happen less frequently and I can go weeks between them, when it used to be daily or at least a few times a week. So at least there’s hope that this is also something that may be temporary. But who knows, this whole recovery process seems to be a bit of a mystery. It goes very differently for everyone, the healing process takes time (and I’ve heard everything from a year to up to 4 years, so I’m not even sure as to how much change I can still expect), and you just don’t know how you’ll end up.

So yes. I now know that there is life past meningioma. It wasn’t always easy to get here and I know I have been lucky, very lucky. But I am here. I am here to see my kids grow up, to be a mother to them. I am here to be a friend and a partner to The Husband. I am here to be a friend, a daughter, a sister. I am here to be... the list could go on and on, but you get the picture. I am here. And not only am I here, I am better than I have been since I first started, unknowingly of course, showing signs of this thing in my head.

Life is good.

Harrumpf

2009-12-17T12:07:00.003-05:00

Things are going well, really, not to mislead anyone with the above title or anything.

But.
The thing is that I miss, terribly miss, my sense of smell.

This hasn’t bothered me much before, and really, while I was still under the impression I was just a tad bit stressed out and there was nothing really wrong with me noticing the odd time that I didn’t smell something that others around me did, I never even really gave it a second thought. Likely because I was too out if it to realize that this is something one would and should worry about, but at the time it seemed entirely normal to just shrug it off and go on with my day.

Anyway.
That’s not really my point.

My point is that after over a year of knowing my sense of smell is gone and won’t come back, I finally miss it. And you know why? Because I’ve been baking up a storm over the last few weeks in preparation for Christmas and know exactly how wonderful those cookies and traditional cakes smell. I know, because I’ve made them many times in the past. I remember. And the new recipes I've tried this year? I can imagine just how heavenly they smell based on the ingredients.

But I smell nothing.
Not even a little bit.

Just nothing.

And for the first time since I’ve become aware I’m anosmic, it bothers me. Really bothers me.

I still think that in the greater scheme of things it’s a pretty small problem to have, given what could have been. And it hasn’t been a big deal for me up to now – but last night as I was looking at the dozens of cookies and couple of Stollen I’ve been making, I almost burst out in tears.

And this is exactly how things seem to be going for me at this stage in the recovery process. The worst seems to be over and I consider myself to be one of the lucky ones. Pretty much everything has gone back to how it used to be and for the last couple of months, I’ve largely been back to my old life and have even gotten over constantly having to think about this whole mess – but every once in a while something hits me and brings it all back in some unexpected way.

Like last night.

Meningioma Pictures? Finally?

2009-09-28T13:07:00.002-04:00

So there I was after my focus group, all smug and happy as I’d found out from the nice oncologist in charge of the proceedings that it might indeed be possible to get my intra-operative pictures. Yes, he had assured me, the surgeons have those pictures and if they want to, they can give them to you on a disk. Unless they’ve been thrown out by now.

Thrown out??
Pictures of the inside of my head?
Who’d do such a thing?

Of course, the whole thing might not be as exciting to a real doctor who opens up people’s heads on a regular basis and fiddles around with what he finds inside, but I really want those pictures. I have this weird attachment to them, because they show MY brain, and MY tumour, and MY skull, and the giant indentation left in MY brain by MY tumour. So much more interesting than the MRI images! Why wouldn’t I want them? Having a meningioma and a craniotomy, a craniotomy for crying out loud, are some of the most bizarre things that have happened to me so far, and I still feel the need to have some sort of visible proof. Yes, I have the scar and I have the dent, but I can’t actually see either of them and I want those pictures so I can see, in colour, what happened.

Anyway.

Given that I was about to see Dr. Hotshot to finally get my MRI results, I figured I’d just ask him during the appointment – allowing me to bypass the nasty secretary. Until the oncologist mentioned that I could just phone up said secretary to make arrangements with her. Urgh. All I could do was mumble something about the secretary not liking me and how it was better to avoid her – and he just grinned at me and said:

“You’re not the first one to say that about her.... I know she can be a bit tough at times.”
“At times?”
“Okay, always!”

It felt strangely good to hear that she’s got a bit of a reputation. At least I haven’t done anything to her to deserve her nastiness. It’s just the way she is. I still don’t understand why she’s allowed to have contact with the public at all, but whatever.

About those pictures, though. When I did see Dr. Hotshot a few days after the focus group, I brought up my little issue around those pictures. Quite agreeably he told me to send him an email and he’d send me some.

That was almost a month ago. Still nothing.

Bastard.
(Not that I expected anything else, but still.)

You Don't Have A Meningioma Anymore, In Technical Terms

2009-09-09T13:14:00.004-04:00

Here it is, my MRI report from my botched up one year follow-up. Much better than the one in which the original findings of "[s]table frontal midline extra-axial lesion, likely an anterior falcine meningioma" where outlined.

MRI OF THE BRAIN: June 9, 2009

COMPARISON STUDY: November 5, 2008.

CLINICAL HISTORY: Frontal meningioma.

PROTOCOL: Multiplanar, multisequence MR images of the brain including post-gadolinium contrast.

FINDINGS: There has been a previous frontal craniotomy with resection of the large meningioma within the midline bi-frontal region. There has been mild interval increase in the mild encephalomalacia and gliosis within the bilateral inferior frontal lobes, slightly more on the left. There is enhancement of the dura within the bi-frontal regions, as well as the falx and frontal sinuses in keeping with post-surgical changes. No discrete mass is seen in this region. No definite evidence of recurrence.

The remainder of the examination is stable and unchanged compared to the previous study.

OPINION: Post-surgical changes within the bi-frontal regions, without definite evidence of residual tumor.

Or, as Dr. Hotshot said, "Your MRI is clear, that's good."

I don't like what it says about an increase in encephalomalacia, as that sounds bad and, according to the Brain Tumor Dictionary, means "dead or infarcted brain tissue. It is also called 'softening'. It can be due to many different causes, including strokes, physical injuries, radiation injury, etc. It is also sometimes used to refer to loss of tissue associated with brain surgery."

Maybe it is normal to loose a bit more brain tissue in the first year? It's just that I'd rather keep all I've got...

I'd also prefer it to say definitely no evidence of recurring/residual tumour rather than this wishy-washy "without definite evidence of residual tumor" - but I'll take this over definite evidence of recurrence.

Obviously.

I guess it's all good. Maybe not entirely perfect, but given that I had a large-ish meningioma in there only a year ago, I take it. Quite happily.

Yesterday's Weirdness

2009-08-27T10:43:00.000-04:00

Maybe it came from having missed that day pretty much entirely last year, and having been fully awake and functioning yesterday?

I mean, I dropped the kids off at daycare yesterday, went to work all day, picked the kids up from daycare, made and had dinner in about the same amount of time I was in surgery that day last year.

How can that not be weird?

Craniotomy Day

2009-08-26T08:53:00.003-04:00

This day last year they'd already cut open my head from ear to ear, removed my forehead, folded the skin over my eyes, and started doing what they do when they remove meningiomas surgically. We didn't know yet that it was to take 10 hours, rather than 6, that things were going to be pretty rough during the early recovery, and that just one year later I'd be sitting here at work, with not much to show for given the kind of mess I was in back then.

That's the best thing, of course. Other than that, it's turned out to be a bit of an odd day. It's still early and maybe that will change, but I do feel a bit on edge and just not entirely myself.

Over the past little while, I have been going back and forth wondering whether I, or we, should mark it in some way, and have decided to not really do anything. Pretending it's a day like any other, I guess. I probably was hoping that it'd feel like any other day, but somehow it does not. I see myself there, on the operating table, with a gaping hole in my forehead, and all sorts of medical professionals bustling around me. Machines are beeping, tests are being done, drugs are administered, and people are coming and going.

I was so out of it last year that I am not sure I was fully aware of the magnitude of what was going on and the potentially disastrous consequences. I was scared, sure, but I was also very much in a fog. Maybe because of the traumatic news, maybe because of the short time frame between diagnosis and surgery, maybe because my brain function was too impaired to really understand what was going on (the frontal lobe location of my meningioma surely cannot have helped as figuring out consequences is part of what happens there). Maybe all of it.

Today, I am fully aware of what could have been, though, and I am thankful for that. I am thankful for Dr. Hotshot; thankful for the nice neurologist who diagnosed me so promptly and got me the tests I needed; thankful for my optometrist who noticed that something was wrong with my eyes and got the ball rolling; thankful for my in-laws who took in the kids and cared for them for that first entirely horrible month; thankful for my friends and family who supported us every step of the way; thankful for our medical system that gave me this surgery in a top notch facility with a top notch medical team, all the follow-up I needed, and did all of this without extra cost to me; thankful for all the other medical professionals involved in my surgery and after-care; thankful for the Emergency doctor and neurologist on call that day who realized I wasn't just crazy-talking, but that my brain was still so swollen that I needed a higher dosage of that darn steroid; and most of all, I am thankful to The Husband who was there for me through all the craziness that ensued when the combination of brain-related problems and drug side effects knocked all sense out of me. And by 'all' I really do mean all.

In many ways, the last year was the worst of my life so far, but maybe also the best. I know how fragile life is, and I know that I have people around me who are there for me.

I know I am strong.

The Results Are In

2009-08-25T11:03:00.003-04:00

Finally!

“Your MRI is clear, that’s good.”

This from Dr. Hotshot, who finally had time for me yesterday afternoon, almost three months after my latest MRI. Sheesh. This, of course, is what I wanted to hear, especially after last December’s “Well, there’s something there, but it’s most likely scar tissue.... We better keep an eye on it.” And I’m happy, ecstatically happy, really. Re-living some of my immediate post-surgery life for the recent focus group has driven home the fact that I really don’t ever want to have to deal with this again.

But other than that, it was pretty much a non-event. The whole thing took about 5 minutes, and he’s still as much of an arrogant jerk as I remember from last year. Good thing he’s one of the best at doing what he does, else I’d be looking for someone else.

When I mentioned that I get frequent headaches, he immediately snapped “WELL, WE ALL GET HEADACHES, DON’T WE????” before I had the chance to say that these were not normal headaches that we indeed all get. He became a bit friendlier when I explained how different they are from anything I ever had before and proceeded to look at my MRI to see if there was any reason for any headaches. Apparently there’s not, so he left it at that. These headaches are not constant and don’t last very long when I do get them, but they can be intensely painful before fading away. I have never had headaches like that before my craniotomy and not while I had an undiagnosed meningioma in my head, so I am not sure where they are coming from. Obviously, I’m tempted to make the link to the surgery – but maybe that’s not what it is at all?

We also looked at the MRIs then and now, and the meningioma still strikes me as weird and awful every time I see it. And seeing the difference is quite mind-boggling. The image over here has the bugger showing up bright in the dye, and the image over there has normal brain tissue and a bit of a fluid-filled space that has not (yet? again?) been occupied by brain. He seemed a bit puzzled when I questioned him about what’s going on with that space – not because he didn’t know, but more like I was a pesky fly that was bothering him.

Every time I’ve seen him, it’s been clear that he’s not interested at all in talking to any of us mere mortals. It was just so much more evident yesterday since he must have given all his students the day off or something and he had no one around that he could be teaching instead of dealing with us. It was quite something to have had him all to ourselves, in all his glory.

Oh well. He did a wonderful job of cleaning out my head without causing any extra damage, and that’s what counts. Let’s hope that one day they make doctors who are both extremely good at what they do and have bedside manners. Until then, I’ll put up with him.

There’s really no one else I’d rather have.

So I Went

2009-08-23T12:59:00.000-04:00

To Big, Fancy Hospital’s focus group on quality of life issues after skull-base surgery.

It was one of 9 such groups interviewing a total of 40 people and is part of a research study that will enable physicians to develop a questionnaire that is to be administered to skull-base surgery patients in frequent intervals in the first year or so after surgery. Through this questionnaire, quality of life issues (social, emotional, physical, financial etc.) will be compared based on different treatment options and length of time since surgery. They hope to identify specific impediments linked to particular types of treatment and figure out how to deal with them or avoid them.

As was outlined in the consent form, a lot is known about how surgery improves life expectancy and symptoms, but apparently – and I find this really shocking – little is known about how patients’ overall lives are affected by diagnosis and treatment.

And here I thought it was just my doctor who didn’t really take the time to ask me detailed questions about how things were going when I finally did get to see him a couple of months after surgery. Sheesh, it doesn’t take a rocket scientist, does it?

Anyway. I’m glad they let me fill in some of the blanks.

As interesting as it was to hear from others who’ve had skull-base tumours and surgery, it really brought home the fact that I’m pretty much out to lunch in my understanding about my own quality of life issues. There I was with my pre-conceived notions about this whole thing, namely that I wasn’t going to have too much to add to the discussion because I’m feeling fine. And don’t get me wrong, I do feel fine, though, as it turns out, maybe my feeling fine is limited to the physical sense only.

I definitely came out as the worst basket case when we discussed quality of life immediately following surgery. A hush fell over the room when I re-counted my experience of continuous panic attacks; endless hallucinations; switching languages without noticing; having problems figuring out how to do basic everyday thing such as having a shower and drying off; not being able to follow step-by-step directions; only being able to do one thing at a time to the point of not being able to walk and talk at the same time (seriously!); insomnia; restlessness; loss of handwriting and signature; as well as an extreme lack of strength that meant I occasionally was unable to lift up my fork to eat. It was odd, really, as I’d always assumed everyone had a rotten time in the first bit after such a hugely invasive surgery, especially the kinds of people in my group who mainly had diagnoses much worse than my own (i.e., various kinds of cancer).

However, what happened was that the guy who was up after I gave my list, which really left off things like my eyes not being able to focus and not seeing in the same way, not having a driver’s licence, etc., looked to be embarrassed to mention “tiredness and nose bleeds” as his main quality of life issues in the period of time immediately following surgery. Other people were listing physical appearance as their main issue back then – understandably so, ‘cause we all look like hell immediately after a craniotomy and other surgery more directly on your face, but not something that was even on my radar as a quality of life issue. Even though I full well knew how horrific I looked.

Ugh.

The really tough part was when we came to talk about how we’re doing now. I again came out as the worst basket case – although this time I assume it’s because everyone else had at least 5 years between surgery and now whereas for me, it’s coming up to one year only. It was nice to see how well everyone had adjusted and how they portrayed what happened to them as nothing more than a bump in the road. At the same time, it was painfully obvious that as much as I might like to think of this as nothing more than a bump in my road, it is more like a giant monster and not some dinky bump.

This had actually started to become obvious when I first got the call to participate – all I heard was “Dr. .... Big, Fancy Hospital...” and I almost passed out, immediately thinking the worst. Similarly when I walked into the room – I immediately got sweaty palms, I was very much on edge, and my voice was no more than a croak. And this emotional response is what got me most. I simply had not expected that I’d have such a strong reaction to it all and that things are still so very close to the surface.

I mean, I know that I still think about it and that in some ways it feels like I’m always looking over my shoulder, but I had not realized that it still affects me as much as it does. At some point I explained how this whole mess had affected not only me but also my family and how it still affects Sophie and Owen, and I was almost in tears. Maybe not much of that has made it here, but I carry it around with me.

Time heals all wounds? I hope they’re right.

Mark your Calendars

2009-08-21T11:26:00.007-04:00

Meningioma Awareness Day 2009:

A Roadmap to Your Journey with Meningioma

October 3rd, 2009 from 8:00 am to 5:00 pm

Joseph B. Martin Conference Centre, Harvard Medical School in Boston, Mass.

(sponsored by the Brain Science Foundation)

Addendum

2009-08-19T10:02:00.002-04:00

Another interesting tidbit I found out in the focus group, but forgot to mention:

MRI machines are getting smaller and smaller, thereby making it more difficult for some people to fit in. One of the participants was relating the story of someone he met during his course of radiation who'd somehow been wedged into the machine, but got stuck, yes STUCK, on the way out! Apparently, the board came out, but the poor man remained in the machine!

Good grief.
I'd have had a complete meltdown.

And from the looks of it, this story was not made up as the doctor in charge of the proceedings nodded his head knowingly throughout and respectfully explained that a university a couple of hours out of town has huge MRI machines that belong to their Department of Veterinary Medicine. Apparently, they accommodate very large humans as well, and with increasing frequency, such humans are referred there for their scans.

Can you imagine?

Ring, Ring

2009-08-13T09:47:00.000-04:00

On this day last year I found out, via telephone - that’s right, via telephone from my nice, albeit vacationing, neurologist, that I was the unwitting host to a meningioma brain tumour that needed to come out as quickly as possible and that I should please go see Dr. Hotshot, one of the very best neurosurgeons in town if not the country, the very next morning. And yes, he had already set up an appointment with the man for me and I would maybe have to be in the hospital for a couple of days and we wouldn’t know what sort of state my brain was going to be in after surgery and I should try to not go on the internet to read up on this or if I couldn’t help myself, then I should at least not believe anything I read at this point. And if I had any questions, I could phone him back at any time, the hospital had been instructed to take my calls and put them through to him, while he continued his vacation. He really is a nice guy.

I was so out of it that I thanked him, hung up the phone, phoned P. who was in the midst of his parental leave with Owen to tell him the news and then proceeded to have lunch with a couple of co-workers as we’d planned. And no, I didn’t let on why I was a wee bit late for lunch.

Seems utterly unthinkable now, but there you have it.

And today?

I’m sitting here, again at work, almost feeling like this whole mess never happened.
I guess that's a good sign. Not all days are like that, but I take them when I get them.

Odds And Ends

2009-08-11T15:08:00.006-04:00

While I'm still digesting my focus group at Big, Fancy Hospital, here are some interesting tidbits I learned from the oncologist study co-ordinator while there:

The most dramatic changes in recovery after surgical treatment of a skull-base tumour happen within the first year. After that, recovery very much reaches a plateau for most people and not much is expected to happen.

I'm happy to go with this assessment, maybe because I feel pretty much back to normal and can accept whatever issues around memory and word-finding I may have? Maybe it's because I don't even know that I have issues around word-finding and memory and that there is a possibility I'm just super-conscious of everything that happens and immediately wonder whether it's my brain caving in rather than something that could have happened to anyone? But based on how I feel and how I'm dealing with my 'new' brain and all its kinks, I"ll be alright if nothing much improves from here on in. That's a good place to be in, especially when I think back to all the craziness I've been through over the past year.

Not to put oil on the fires around the debate on whether all meningiomas should be classified as cancer, figuring out what is and what is not cancer, apparently, is not as clear-cut as one might think when one has no medical background whatsoever. As the good doctor explained, there are all sorts of tumours which are benign, even though they behave more like malignant ones, and then there are those which are actually malignant, but behave like they are benign.

I've never really understood this debate, and am quite happy to go with what my doctor has been telling me - from the outset, I'd been told that the good news in all this is that my meningioma was benign and that it's not cancer. Even though there are atypical and cancerous varieties as well. The above comment from the oncologist was also not directed at me per se (I was the only one with meningioma in my group), but more a general comment when it turned out that some participants didn't know the name of their respective tumours or whether or not it had been cancerous.

There are also news on my meningioma pictures and the nasty nature of Dr. Hotshot's secretary, but I'll save those for another post. Aside from saying that I may yet be able to get my hands on the pictures and his secretary is, indeed, evil. Generally evil and nasty, and it's not just me.

Ha!

Thanks For Asking!

2009-08-05T14:49:00.006-04:00

So. I got a call from Big, Fancy Hospital. The first thing to jump into my mind, of course, was YIKES-they-are-moving-up-my-appointment-'cause-they-did-find-something-bad-on-my-MRI!!!!!

They didn't. Or, if they did, they haven't yet told me about it.

It turns out that Dr. Hotshot thinks I'd be a good focus group participant to discuss quality of life issues after skull-based surgery. So he had one of his numerous minions phone me to invite me to attend this weekend.

I'm not at all sure why they are asking me. Before diagnosis and immediately after that darn craniotomy, I had plenty of quality of life issues. But these days everything is going really well. I'm not sure I have much to offer and am wondering why they are inviting me over someone who may actually be experiencing some real quality of life issues. Yes, I miss my sense of smell and I'm still upset at how hard this was on all of us, especially little Owie - but really, given that I had a fairly large brain tumour, I don't have too many complaints.

Did the people who are really suffering all pull out or are not interested in the first place? Are they trying to make themselves look good by inviting people who are doing pretty well? Do they know something I don't - as in is there something on my MRI and they are telling me during my appointment on the 24th that they will be shipping me off for more surgery or radiation and my focus group answers are going to be the baseline for what's to come?

Or am I just being paranoid now? The sanest assumption, at least I know that much, is that they went with some sort of random sampling technique and it really has nothing much at all to do with me. But I guess this goes to show how jumpy I still am about this whole mess.

And it hits my biggest quality of life issue right now square on the head: the fact that a possible recurrence is now, and will be forever, hanging over my head. After all, meningiomas on the falx, like mine, have a relatively higher rate of reccurrence. As have those which have had involvement with the skull.

How can I not be jumpy?

Anyway. I'll find out on Sunday. If I make it, 'cause there is a slight chance we'll be out of town this weekend, trying to get away from our endless kitchen renovation.

I Am A Brain Tumour Survivor, Too

2009-07-31T13:00:00.004-04:00

On August 13th, 2008 I was diagnosed with a large and most likely benign brain tumour called meningioma, after an MRI that took place the day before. The neurologist, whom I saw rather quickly after my appointment with an ophthalmologist, had the images couriered to him while he was on vacation, made the diagnosis and got me an appointment with one of the best neurosurgeons in town for the very next day.

Dr. Hotshot confirmed the diagnosis, went over my (at this stage lack of) options and put me on the list for surgery. I had my craniotomy on August 26th, 2008 - less than two weeks after diagnosis.

I did not have to leave the country for diagnosis and/or treatment. Neither did I have to re-mortgage my house to have surgery. Instead, I received excellent and free care in a state-of-the-art facility from a top notch medical team which saved my vision and brain function, if not my life.

My government did not leave me to die.

Sure, our system could be improved. Yes, I did have to wait about a month or so for my optometrist to get me an appointment with the ophthalmologist. No one knew how bad things were at the time, so I waited while the more critical patients got care first. Still, merely 2 months and 1 day went by between my initial visit to my optometrist to my 10 hour craniotomy.

Bite me, Shona!

Next time you go public, at least tell the truth about your medical condition and the urgency with which it needed to be treated!

11 Months

2009-07-26T10:33:00.000-04:00

So, here I am, 11 months past my all day craniotomy, feeling great!

I have a lengthy dent on top of my head around the scar. And I have a bald spot. I have no sense of smell (and miss it, sometimes a lot and other times I don't even think about it),

All of this is permanent.

I quite likely also still have blind spots in both eyes, and they may or may not go away over time.
But otherwise I seem to be fine. I don't know whether any incidences of forgetting something are normal or related to the meningioma. I don't know if headaches signify that it's back. I don't know if it's back, period, and won't know for almost another month when busy Dr. Hotshot finally has time to see me to give me my MRI results. Almost three months after I had the last one. Emotionally, I'm mainly back to normal and no longer just break into tears over nothing. I've come close maybe once or twice in the last few months, so it's definitely much better than in the early months after surgery. I have enough energy to deal with having the kitchen renovated while taking a three-week long intensive course the instructor compares to boot camp and has homework assignments that go past 11:00pm every night. I'm organizing my German parents group in hopes of it helping my kids become bilingual.

And most importantly, I'm having fun.

Even though I am likely to always have this hang over my head and worry about re-growth, I feel very lucky. Lucky to be alive, and lucky to have come away without some debilitating problem or other. I know it doesn't work out for everyone.

Last Year

2009-07-06T12:33:00.003-04:00

This time last year, I was waiting for an appointment with the ophthalmologist to confirm that I really had glaucoma as my optometrist suspected. Back then I thought that was bad....

Heh :)

My vision went from bad to worse, so quickly that I could tell the difference from one day to the next. One day I could still barely make out what it said on emails, the next I couldn't. I had just returned to work from my last mat leave. Things quickly and noticeably, finally noticeably, fell apart all around me. I was still gaining weight... my head was so sore all the time that I spent most of my time in a dark room in bed, carefully hidden beneath the covers.... And even when I was up, I barely had the energy or stamina to do much of anything. The Husband and I did not get along too well - I was so out of it that I didn't even realize I was seriously ill and also didn't care much of what was happening to us as a family, and he probably thought I was over-reacting and just plain old lazy. As he told me later, I was behaving like a teenager - moody, grumpy, lazy, argumentative, expecting him to do stuff for me, etc...... Now of course we know that the frontal lobes, the poor frontal lobes which were being squished hard by that darn meningioma, regulate emotions, personality and that kind of thing. It all makes complete sense now - but back then we were flying blindly and didn't put two and two together.

I'm so glad this is behind me. Behind us.

Not that hearing the words "You have a brain tumour" was much fun or anything, but within days of my diagnosis they fixed me up nicely and now, less than a year later, I feel as good as new. Well. Almost. There is my lack of smell, and the dent on my head. The bald spot. And the part on my forehead and top of head that still feels weird, not totally numb, but not totally normal either. And if I thought really hard about it all, I could probably find some other things that are different from before surgery - but on the whole, I'm great.

I'm not hiding out in bed waiting for my head to fall off, worried about going blind by the next morning, yelling at the kids to keep it down, not being a partner to The Husband. And I'm back to my pre-pregnancy weight - without even having gone on a diet.

I'm me again! And I love it!

10 months

2009-06-26T11:15:00.000-04:00

Life is great. Everything's well.

Hard to imagine the basket case I was for the first little bit after surgery and how crappy I'd been feeling for years before diagnosis.

Woo hoooo!

Harrumph!

2009-06-18T10:54:00.003-04:00

I love my daughter. Really, I do.

But.

Last night, she was a bit of a bad ass, or more honestly, completely and utterly horrible, from the moment I picked her and Owie up at daycare. We all have our moments, I know, and that's not what's bothering me. It's more that I told her that I wasn't going to play with her after dinner if she didn't start behaving (mature, I know), thinking that this would maybe get her thinking about right ways and wrong ways of treating people. But nooooo, it didn't.

Instead, she looked me straight in the eye and said, "Do you think Papa will play with me then??"

It was rather funny, but I managed not to laugh. Here's the thing though..... why is empathy such a foreign concept to her still? I know toddlers/pre-schoolers are not fully developed and they are made to think of themselves first at all times - but she's been with us for 4 wonderful years now and you'd think something would have rubbed off. Never mind developmental milestones.

I guess I need to remember that this is the same child who also proudly delivers clothes that no longer fit her and toys we've outgrown to the local woman's shelter, snuggles with Owen when he's upset, and gives me frequent MRIs so to help make sure the meatball she thinks was in my head is really gone.

Last night was just a bit much.

It Wasn't So Bad

2009-06-11T10:41:00.001-04:00

Tuesday night's MRI, that is.

I can't exactly say that I enjoyed it, but compared to last time, it was a piece of cake. Thanks to the pharmaceuticals, of course. But hey, whatever works.

It'll be a while before I get the results, but right now I'm not even nervous about that. I've been feeling great and even though I don't trust that entirely just yet, for now I seem to be able to go with that.

Besides, if there is some residual meningioma, they've caught it early this time and it won't, presumably, turn into the huge mess it was the first time around.

Better Late Than ...

2009-06-08T08:35:00.008-04:00

From the Playing for Change website:
"The idea for this project arose from a common belief that music has the power to break down boundaries and overcome distances between people. No matter whether people come from different geographic, political, economic, spiritual or ideological backgrounds, music has the universal power to transcend and unite us as one human race."

Maybe This Will Make Me Feel Better

2009-06-03T08:46:00.005-04:00

Dear Big Fancy Hospital,

sorry for the delay in providing feedback to you regarding my encounter with you in August/September 2008, but it's not like you asked or anything. A bit odd as far as I am concerned, given that you found the time to send me a letter outlining the benefits of donating some cash to your organisation. I guess you are not too familiar with the concept of selflessness, or trying to think about others before you think about yourself. I am used to that since I live with a toddler and a pre-schooler, but let me just point out that the polite thing would have been for you to ask me about my experiences before hitting me up for money.

And don't get me wrong, I don't mind you asking for a donation. I know health care is cash-strapped because our income-dependent contributions don't cover everything you need or want, and I full well understand that I just cost the system a whole wad of cash. It's just that from a customer-service point of view, you might want to cover the basics before you move on to the more important things.

Anyway.

Let me say that I am extremely satisfied with the medical care I received. Dr. Hotshot did an outstanding job of cleaning out my head, and my craniotomy went off without a hitch. I will forever be grateful to him. He delicately removed my meningioma, and even took 4 hours longer than what he said was necessary in trying to get all the 'sticky nubbins' out (his term, not mine). And all this without causing too much damage to my brain. I have learned enough over the past few months to know that I am very lucky to be alive and to be functioning the way I am. And I owe that to him and his team of fine Fellows and Interns and who knows who else was involved.

Everything else.... I am not sure you even deserve a passing grade. Sorry to be so blunt about it, but I've had almost 10 months to think about it, let's make it 8 months to exclude the first couple of months post-surgery when I was more than just a bit under the weather. And really, my thoughts on this haven't changed too much over this period of time.

Pre-surgery

It is ludicrous to need the okay from my family doctor to proceed with surgery when he knew nothing about symptoms and wasn't even the least bit involved in the diagnosis. My optometrist got the ball rolling, but she of course, wasn't eligible to give me the medical okay for surgery. I know that Other Big Fancy Hospital in town makes their own staff give the medical okay for this type of surgery, and I think that this is something you may want to consider for the future. Also remember that I was one of the lucky ones - I at least had a family doctor and I managed to get an appointment in the rather tight time frame my situation required.
Also, if the family doctor has to give the medical okay, then why does one need another once-over by one of your pre-admission nurses? Some of us work, yes, even when we have a brain tumour eating up whatever it can get at, and these types of appointments take up valueable sick days you need when you recuperate.

Day of Surgery

My poor husband was told he'd be getting periodic updates from the OR - yet nothing happened. Well, maybe you count being told at 2:00, when surgery was supposed to be over, that they'd be another couple of hours as a periodic update, but in that case you might want to check the meaning of the word periodic. As far as I know, it means more than once. At the very least.
To top this off, when the extra couple of hours were up, no one came for another two hours or so to tell him that surgery was indeed taking another two hours. What you put the poor guy through is really beyond words - and for that reason alone I am very tempted to not ever make a donation to your institution.
I couldn't be released from the Recovery Room when I should have because none of my doctors were available to sign me out. Apparently, they'd all gone home. Understandably so, given that they'd just done a very taxing job for the last 10 hours - but maybe some other neurosurgeon or neurologist should be allowed to make that call. You've got them on call anyway, I know from a trip to the Emergency Room a few days after you'd kicked me out of the hospital, but we'll get to that point later. Just please think about making sure patients get transferred in a timely manner to where they are supposed to go and to where their family has been told they will be going.

Hospital Stay

I'm a bit hazy on the details because I was having huge reactions to the steroids I was given, but what is very clear is that my husband at the very least should have been told about these medication side effects, rather than having us assume that all this craziness was due to brain damage. It was noted in my file, I know this because I went back to check, that I was having auditory and tactile hallucinations and panic attacks (and I remember some of those, just that back then I thought they were real) and this should have been discussed. If not with me, then definitely with my husband to give him some indication of what was going on.
Rounds were terrible. Various doctors breezed in and out in under 60 seconds, leaving no time for questions, let alone some sort of assessment of what was going on. As a result, no one in the hospital knew that I mixed up red and green on occasion, and that my poor husband had to listen to me speak German to him, which I'd never normally do.
I was rather unceremoniously kicked out of the hospital, only 3.5 days after my 10 hour craniotomy. I know that you need beds and that people do better when they are able to recuperate at home - but I was feeling so crappy that I told everyone who'd listen that I shouldn't be send home since I wasn't ready. And quite clearly I should not have been send home so soon, else I wouldn't have ended up in the Emergency Room 3 days later and have my steroid dose increased because my brain was still more swollen then what they'd like to have seen at that stage.
This brings me to another point - maybe you should think about actually believing what patients say. I understand that some people will fake things, but in my case for example, I found all sorts of chart notations that 'Patient claimed she has no pain'. It never seemed to have occurred to anyone that I really had no pain and really did not need pain meds after the first 24 hours or so. It also explains why some of the nurses were constantly pushing pain meds on me that I didn't want or need.
There was an utter lack of information on what to expect once we got home. This made the whole situation even more frightening than it already was.
The little booklet we received was too generic to really be of much use, though I have it on good authority that you are in the process of ramping up your release information. That's great to hear, and really, it's quite upsetting to receive more information on just about anything you might need to know upon release from a c-section than what you get after brain surgery.
Some of the information in the booklet was contradicted by release instructions from the nurses. As you can imagine, this is also a little less than helpful and reassuring.

Aftercare

It's a bit on the odd side to be given a staple remover to take to your family doctor so he can remove your staples. It worked out okay, but my family doctor had quite obviously never dealt with a brain tumour before and seemed a bit nervous and excited about the whole thing. He was very graceful and even offered me a tetanus shot - I'm not sure whether this was an attempt at humour on his part or whether he somehow thought I might need one - but it's a bit unnerving, to say the least. While I don't have a problem visiting my family doctor for this sort of minor thing, he quite clearly was not prepared. Similarly with questions about meningioma and what to expect - he couldn't/still can't help at all and just refers me back to Dr. Hotshot.
Dr. Hotshot, of course, in unavailable at the best of times, what with being busy saving lives and all - which is fairly close to what he said to me when he phoned me one Sunday night to cancel my very first follow-up with him 6 weeks after the craniotomy.
I realize brain surgery is routine for you people and you may not think it's necessary that people have access to decent information and timely follow-ups because as far as you can tell, it's nothing to get excited about. But please try to remember that patients see this a wee bit differently. Nothing about having your head sawed open, bone removed, skin folded over and a microscopic blowtorch taken to your brain is routine for your patients, so it'd be nice to make this whole experience as pleasant as possible. This, at the very least, would include access to your doctor or someone trained in things neurological along with the provision of timely and accurate information.
Dr. Hotshot's secretary, the first point of contact, is not meant to be a frontline staff. She does not return messages, changes her mind on how to do things without telling you about it, is openly rude and dismissive, and has her phone on call forward (to voice mail which she prefers not to return) most of the time. Again, this does not make this whole mess more bearable for people, it just adds to the stress brought on by this medical crisis.

I could add to the above, but these are probably my most important observations. Working in a big public institution myself, I know how easy it is to get bogged down in procedure and how we sometimes forget the people we serve - but please, keep in mind that finding out you are stuck in a medical problem is a huge crisis and leaves you in a very vulnerable position. It is in your power to do what you can to help those caught up in a medical mess deal with it as best they can, without making it harder.

I should add that I have no qualms about recommending Dr. Hotshot to anyone in need of a skilled neurosurgeon - it's just that being sick like this involves more than just medical skill in removing the offending tumour.

All I'm asking is that you think about what I've said and maybe take it into consideration when you re-evaluate your processes.

Thank you.

9 Months!

2009-05-26T12:25:00.000-04:00

Life continues to be great and improve ever so slightly as I gain more distance from this whole meningioma and craniotomy mess. I feel better than I have since before I first got pregnant with Sophie - the same Sophie who'll always be my baby but is about to turn 4 (yikes!).

That in itself is amazing (the feeling better than I have in over 4 years now). I did get my life back and I'm just so grateful for the amazing things modern medicine can do, my friendly neurologist who diagnosed me swiftly without messing around, and, of course, my very skilled Dr. Hotshot who managed to clean out my head without doing too much damage.

So really, it's pretty much like what I said at eight months - I have the same issues I had at eight months, but overall things continue to normalize. And they have normalized to the extent that I'm quite certain already that I'm not far from where I would be had I never been sick.

There's not much more I could want at this point, really. Though the two things that's a bit more of a worry than they were last month are:

I seem to be fumbling for words more so than ever before in my life. I'm assuming this is related to the meningioma and/or the brain surgery, but I'm not sure. Even though I've noticed it a couple of months ago, it seems odd for it to show up so many months after having my head scrubbed out. It's not interfering with my regular life too much, but it's noticeable to me. I'm keeping an eye on it and if it continues or gets worse, I'll maybe have reason to speak to that nice neurologist again.
I have a follow-up MRI on June 9th. Even though I want to know what's going on inside my head, I'm not looking forward to going into the machine. I don't want a repeat of the huge panic I had last time and that lasted pretty much for the rest of day, so I've caved in and gotten myself some drugs. Hopefully those will enable me to deal with this as the minor inconvenience that it is and not have it turn into such a big deal.

Otherwise, things are good and I'm looking forward to more home renovations, spending some time with my little family over the summer, and taking a bunch of courses throughout July.!

Mama Is A Hard-Ass?

2009-05-19T09:37:00.002-04:00

After much soul-searching and talking to others in similar situations I've finally decided to be a bit more firm in asking Sophie to speak German with me and Owie.

Fairly recently, we've stopped praising her every time she says a German word. This has lead to her speaking German a bit more without it seeming to be bother her. In fact, judging by her tone of voice and her expressions, she seems to enjoy it. This has given me a ton of hope that we're on to something and building on this wee bit of momentum, I'm now actively asking her more frequently and without scolding (of course!) to speak German to me.

And she does, every once in a while! We've only been at it for a few days and not all that much over the long weekend 'cause we were visiting our unilingual country bumpkin relatives, but she doesn't seem to mind. Quite the opposite, she just grins at me and makes an attempt to get her point across in German. I've been making it fun for her and I assume that helps, but there's been absolutely zero resistance from her, so I'm going to keep it up.

Admittedly, this will take a bit of getting used to, especially since I've never been too fond of this method and am still a bit on the fence about it, but...

Quite noticeably, Sophie's German is falling more and more behind.
She still very good in understanding, but whenever she speaks it, I can tell that it's quite difficult for her.
She increasingly uses the English senctence structure and finding the right words is becoming more difficult, even with words she hears from me several times a day.
Grammatically she's mostly very awkward, though sometimes surprises me when she correctly conjugates irregular verbs (she has a hard time with this in English still, her dominant language).
We want both her and Owen be able to be fluent enough in German so they could attend a German university if they so chose. If the way she is going is any sign of things to come with Owie, this is not likely to happen.

I'm not ready to give up and be happy if they understand what is being said to them, so something had to be done.

And here's the thing: last night she tried to help Owen, who's busy learning how to count to 10 in both languages, to count in German. All by herself, without me on her case. This sort of thing has happened in the past (maybe once or twice) so it may be coincidence, but I'm very tempted to chalk it up to me prompting her a lot these days to speak German and to help Owie learn it as well.

It made my heart bounce, that's for sure.

This Will Remain An Uphill Battle

2009-05-04T12:34:00.005-04:00

Sophie and I went hiking with a bunch of Germans the other day, our second outing with that particular group. She was excited to go and not quite as shy around the other kids as she was the first time around. Followed the older girls around rather than hanging out with the two boys who were closer to her in age, and apparently spoke German to one of the girls! At least she said she did. I know she did with the adults who addressed her, even though in one word sentences. Maybe not as much as I'd hoped for, but definitely better than the last time when she mainly hid behind me as soon as someone, anyone, approached her.

Interestingly enough, none of the other parents had experience with kids who've decided to not speak German and stubbornly cling to that. Similarly, none of their kids corrected their little sibling by telling him the English word when he said something in German.

We always knew she was special :)

She's pretty good these days, though, and at least doesn't correct him when he says something in German. That's a far cry from actually speaking a lot of German herself still, but my new strategy of not praising the heck out of her on those rare occasions when she actually speaks German seems to be working - or at least it doesn't make her even more reluctant to try it out.

Still, we've got a ways to go.

8 Months

2009-04-28T11:36:00.004-04:00

Heh, for the first time ever, I did not notice one of my monthly craniotomy anniversaries (which was a couple of days ago)! This is good, very good, actually. I hope it means that I think about this meningioma mess less and less, and that life is going back to normal more and more.

I guess dealing with the fall-out from the meningioma has become more normal for me, or maybe just more subtle, so I don't notice it as much anymore. I still think about the fact that I've had a brain tumour and lived to tell the tale pretty much on daily basis, but more in terms of how far I've come, rather than what is still lacking or getting better.

However:

I still have a little bald spot on the part of my craniotomy scar that had become infected, and my family doctor thinks this will be permanent. Maybe not all that nice, but I'm not vain enough to consider this to be a problem.
My hair still comes in standing up straight, but I think gravity is beginning to do its thing - this is still funny to me, 'cause both my kids had hair that stood straight up when they were born, and it started coming down when they were around 7 - 9 months old - which is the same distance I have from my craniotomy now.
I miss my destroyed sense of smell more and more. While I continue to think that it's the easiest sense to loose (at least for me), I have totally under-valued its contributions to my life in the past. My world is a poorer place now, for sure, even though I'm ecstatic that I don't have worse problems than this.

On the bright side:

The top of my head and my forehead still feel weird, but sensation is returning more and more. It sure is nice that I can now somewhat feel little toddler kisses, and not just pain when I get whacked over the head with a sippy cup or some toy or other.
We just renovated our downstairs - knocking down walls, removing plaster, drywalling and fixing up our hardwood floors! Sure, we now have a contractor in to fix what we couldn't, but for more than a week, P and I worked hard together on this project. Doing this sort of physical labour, living in the house with two little kids while this was going on, and dealing with the mess that comes with this sort of demolition would not have been possible for me a few short months ago. I was too weak and couldn't deal with stress well - now it was nothing. Maybe not nothing, but I could deal with it pretty much like I would have before I ever started showing symptoms.

And best of all, my little Owie is beginning to come around and no longer finds it as difficult to be with me as he used to since I had surgery and he spent a whole entire month living at his grandparents. I've been spending more alone-time with him, and it seems to be working out. He sometimes still prefers P, but now frequently comes to me or at least doesn't complain when I pick him up rather than P. We're not all the way there yet, but he's definitely taken a huge step. Needless to say, this has taken a big worry off me and makes me pretty happy and content every time I think about it or notice how he comes to me when a month ago he'd have had a fit had I come near him.

Sophie, on the other hand, is still way more attached to me than she is to P and oftentimes still complains when she has to be with him, rather than me. That is still heart-breaking, but I hope that she just takes a little longer to let go of me and will soon want to spend time with P again. Just like she used to.

I think she has always been slightly closer with me than with P, but has never shown a preference as obvious as she has since we picked both her and Owie up from their stay at their grandparents during my first month of recovery. Same with Owen - I think he picked up on me not being right even when he was very little and started preferring P in ever so slight ways, something that greatly increased when we brought them back home. We're on the right track now I think, and that's really the very best development of this last month of recovery.

I continue to be blown away by how far I've come in the past 8 months. I'm no longer this basket case that could barely make it up the stairs and couldn't deal with the stress that comes from living with two kidlets under 4 - I've gotten my life back, and am enjoying it immensely. I continue to organize my German parents' group; I do Tai Chi regularly; I've signed up for a bunch of courses for July, and am thinking about another Master's degree; I take the kids on day trips; and we've once again started to talk about relocating somewhere smaller.

It's great! I just hope it won't all come crashing down when I have my next MRI in just over a month from now.

Home Renovations 101

2009-04-21T16:00:00.002-04:00

Don't do 'em.
Call in the professionals.

Confidence And Bilingualism

2009-04-13T11:01:00.003-04:00

Sophie, who generally claims she doesn't speak German, was able to have a lengthy conversation, mainly in German, with her Deutschland-Oma over Easter. Without her usual "How do you say that in German, Mama?" and parroting my translation back to Oma.

She was on her own since I had to stop Owie from taking the living room apart, pressing all kinds of buttons on the phone, whacking Sophie over the head with a wooden spoon, jumping off the couch, or a variety of other things he likes to do which all have the same effect - he gets into trouble, hurts himself or someone else gets hurt.

But while I was unable to provide her with translation services, she made out okay. And as soon as I noticed that, I held back with the translations even when I wasn't busy chasing Owie around, really leaving her to fend for herself. And she did. She was able to work things out quite nicely. Maybe not perfectly, but more than well enough to be understood. I was completely astonished, since she said a few things I didn't think she'd be able to say and made up new sentences (the way she does without trouble in English). Her spokenEnglish is still lightyears ahead of her spoken German, but she did okay on her own.

She's a bit of a perfectionist, the poor child, and frequently gives up easily when she can't do things perfectly. It takes effort to get her to the point of actually wanting to try things again and again until she masters them. But this, of course, now makes me wonder whether her professed inability to speak German really masks a lack of confidence?

That would also explain why she didn't say more than three words of German when we recently attended the monthly outing of that new German group I found a while back. She was quite excited about going (what with the Easterbunny making a special visit just for the German-speaking kids and all!) and had said before that she'd speak German to the other kids there - but then of course she didn't. She told me later that she was shy - and she is every once in a while, but doesn't normally have that problem with English-speaking kids we bump into on some playground or other. And there are other instances when she shys away from speaking German, even when the questions posed are very easy, she knows the people who are asking her, and has no problem speaking English with them. Like our new neighbours for example - while she's talked their ears off in the past in English, she recently hid behind my leg when the guy asked her something in German. Similarly at the drop-in we sometimes go to - she won't go near this friendly German-speaking father we've met there not too long ago when she has no such problems with most other people who are there, just as long as they speak to her in English.

Also, I think she may not like us making a big deal out of her speaking German. We have in the past and it hasn't exactly encouraged her to speak it more. However, recently, we've just pretended we didn't notice when she spoke in complete German sentences to me, gave Owie instructions on something or tried to calm him down with "Mama holt Deine Milch, Owie. Nicht weinen!" (Mama is getting your milk, Owie. Don't cry!). Maybe treating it like it's nothing special is what she needs?

Whatever it is, her ability to speak German to my mom for 20 minutes is the biggest indication of her bilingualism so far and tells me that trying to get her more exposure to German-speaking people is what we need. To just normalize the whole thing.

So, we are now attending the monthly outings of this new German group, a very loose community of German-speakers and their kids, most of whom are a little older than ours, have parents who both speak German and some of whom have even attended school in Germany before moving here. Most of these kids were very fluent, and we will make an effort to fit these meetings into our schedule. I briefly spoke to the organizer of that group and she said that kids with circumstances similar to ours often react like Sophie - speak as little German as possible, until they've come to a few meetings and figure out that it's a good thing to speak their other language. Maybe another way of saying this is that they'll speak German when they feel a bit more confident with the group?

My other group is still stuck on pub nights for adults only, and I'm organizing the next one as we speak. But my hope still is that once the adults know each other a bit better, people will be more interested in doing stuff with the kids. 'Cause really, the point of this group is to provide opportunities for our kids to learn/speak German, not to go drinking together :) Though that is fun, too, of course. Sophie, for her part, has already complained that pub nights are only for adults and that we should maybe do something with the kids - so there you go, I've got my marching orders :)

We'll see how it goes.

Life Goes On

2009-04-09T15:52:00.000-04:00

So here I am, more than half a year after getting rid of my meningioma. I think I'm moving from a state that has been mainly shell-shocked to one that is more reflective and oriented toward the future. Which is good, I think. I know I still need to think about a lot of the stuff that's happened, and I don't mean the "Why me?" question. That kind of thing has never really been one of my pre-occupations, because I simply don't understand the point of it. And it's not like this is a question that could ever be answered anyway. At least not in any way that would make sense to me or satisfy me.

Sometimes shit just does happen.

Did I ask for it? No. Would I like another one? Of course not. But it happened and it affected me, my kids and my husband. Other people around me as well, of course. Being an introvert by nature, I don't like the spotlight on me, ever, really. So of course I did not like telling people. And it's not like there's a really good way to bring this up. Instant conversation killer, if there ever was one.... With friends and family it's one thing, but then also with your co-workers, and your boss, your neighbours 'cause of course, they notice that the kids are not around all of a sudden, and everyone else as well. Because let's face it, even though they don't shave a lot of your hair, people notice that something is amiss. Even if they are polite enough to overlook that you obviously have been through the ringer. Puffy face from the steriods, shuffling along rather than walking, a bald spot or hair growing in weird, not being able to do the things you used to do while you deal with the initial recovery. But on the whole, it's been quite a pleasant experience - aside from all the attention it generated :) People have been very supportive and protective of me, and I've never had someone say to me, "Oh well, it was benign, so get over it!", as apparently has happened to many other people who've been through this.

I suspect I've still got some grieving to do. But to be honest, I'm not quite sure how.

Does being upset and angry count?
Being sad?
What about regretting things?
Thinking about it every day, sometimes every hour?

I just don't know.

What I do know is that I lucked out in all of this. Not only did I survive, but I actually feel better than before. Deficits, yes there are some - blind spots, anosmia and memory issues, along with the odd cognitive issue. But I'm back to living my life like I did before I ever started showing symptoms, and I know that not everyone who's had a meningioma gets to do that.

But I also know that June 9th I'm going in for another MRI. Hopefully it'll be clear, but I'm aware of the alternative and can't help but worry about it from time to time. But in the meantime I do what I can to enjoy life.

I know how fragile it is.

Good Grief!

2009-04-03T11:32:00.002-04:00

So last night, for the first time since surgery that I'm aware of, I had an episode of utter confusion (not sure this is the right term, but it sure didn't feel right).

We were getting the kids ready for bed and Sophie had assigned me, as she is quite convinced from time to time that she runs the show, to help her with the bathroom and to brush her teeth. Bathroom got taken care off quite easily since she doesn't really need help anyway - but when it came time to brush her teeth, I brushed mine instead and didn't even notice until she came bouncing back into the room and said, "Mama! You're brushing YOUR teeth!!! What about ME????"

Yikes. So much for chugging along just nicely.

I hope that at least some of this can be explained by the fact that I was extraordinarily tired last night, but I do know that pre-meningioma me would have never done this and not noticed.

I Guess We'll See

2009-03-31T12:18:00.004-04:00

... if the old noggin' is still working, that is.

I'm signing up for this certificate programme which is running a bunch of classes intensively over the summer. The topic is brandnew to me, good for the brain as I've learned from my wanderings around the field of neuroplasticity, and should be interesting. Plus, it's definitely a nice diversion from work.

And I guess if I could do grad school with a growing meningioma in my head, I can do a college-level certificate now that my head's been cleaned out. As I found out yesterday when I went back to the hospital to look at my file, my neurosurgeon is quite convinced I have no deficits, aside from that slight anosmia issue, of course. Nevermind he bases this asssessment on talking to me for a few minutes last fall rather than any serious diagnostic work. Nevermind he doesn't exactly know about my worries about my memory, or the cognitive blunders I've had to struggle with over the past few years, especially so after surgery when I couldn't follow three-step commands and felt like a three year old.

However, I continue to feel very good and assume that he's probably right. I just guess I'd have a bit more confidence in his assessment had he actually spent a bit more time with me.

Anyway. If my boss will approve my PD and vacation for this course, I'm set to go. If I can do it, then maybe this is just the boost to my confidence I need?

Chugging Along Just Nicely

2009-03-26T12:37:00.002-04:00

7 months ago today I was knocked out by a bunch of drugs, had my head cracked open and was about halfway through my 10 hour craniotomy. Today, I've dropped of my kids at daycare, come to work, had my morning tea with my favourite colleague (this is our morning ritual and quite likely required for our mental health), have started to organize the next German Parents' Pub Night, and have been beavering away. I'll continue to do what I normally do on a work day, or rather, a day that starts yet another short stint as a single mom while P's away once again at a conference.

And the best thing about all of this is that it feels entirely normal. This is my life, and every day that goes by makes it feel so a little more.

This, I guess, is the highlight of this past month of the recovery stage. While the 26th day of any month still stands out in my mind and I think about everything that's happened around this meningioma more so than I normally do, the overall theme is - dare I say - normalcy.

I am now usually awake past 9:00, though when I do it too often in a row it still makes me tired the next day. But in general, these days I can go to bed and not worry about whether I'll sleep or not, because I know I will. It's nice. And it feels normal. Very normal.

I still think about my meningioma and everything that's happened every day, and I assume that is something that will likely continue for a long time still. Aside from those thoughts though, I have recovered enough to almost live my everyday life like I've never had a brain tumour.

Recovery is still on-going, of course, but it's much more subtle now. Every day activities don't cause problems. If anything, I'm much more active than I have been in years before diagnosis. The symptoms that impacted me most in my everyday life, just that I didn't recognize them as symptoms, were my utter lack of energy and the constant feeling of tiredness. Headaches and going blind only happened in the last few months before the MRI very clearly showed the large meningioma growing in the middle of my head. Personality changes, even though they'd been going on for a few years before I was ever diagnosed, were as subtle as memory and balance issues. But my level of activity had noticeably suffered for the last few years before diagnosis, and it's just nice to be able to do stuff again.

So, overall,

sleeping is back to normal;
energy is better than I remember it being in the last 4 years;
slight issues with balance, as in leaning against a wall while standing on one leg to put on a sock, have been resolved, and I assume I will get even more firmly planted on the ground as I continue to do Tai Chi;
emotionally, I've only really had a couple of crying spells, though I've controlled more over-reactions without showing major outward signs;
my skull is a little less numb, though the top of my head and my forehead still feels like I've got a helmet on;
I've had some itching issues on top of my head and around the scar, but that seems to be gone already again;
my hair is still growing in standing up straight (and looking more attractive by the day....) and I still have a bit of a bald spot;
and I'm a bit calmer than I have been in the first half year post-craniotomy.

Even though not everything is 100% back to 'normal', what's bothering me most is not actually any deficits or issue. It is that my confidence in my body and my mind has been shaken to the core. I haven't gotten over this whole mess by any stretch, though on a day-to-day basis I function quite well. I'm pretty sure that those who don't know my medical history would have a hard time telling I've ever had a brain tumour.

No one sees that I spend a lot of time thinking about this whole mess, time (and energy) I could use for other things. No one knows how worried I am about my memory. No one sees me worry about the impact all of this has had/continues to have on our kids. No one sees how much I worry about a recurrence, what with knowing that there's been some invasion of the skull and that falcine meningiomas have the highest rate of recurrence. No one really knows any of this, and a whole bunch of other worries I have from this.

But aside from this, I do function. Better than I have for years. I am okay, and I feel okay. For now, anyway - 'cause if there's one thing I've learned through all of this, it is to not take anything, especially my own recovery, for granted.

But so far, so good.

Bilingual Strides?

2009-03-25T09:49:00.002-04:00

Maybe all four of us will soon be fluently bilingual!

Little Owie has again increased his German vocabulary and is beginning to speak in sentences.

He can now say Gurke (cucumber), Brot (bread), Hausschuh (slipper), Handschuh (mitten), Bett (bed) and did an okay job trying to say 'Abendbrot' (dinner) - which came out as Abbrot. And he's got not one but two German sentences! 'Papa kommt' (Papa is coming) and 'Wo ist Mama?' (Where is Mama?) - and he can substitute the 'Papa' and 'Mama' with other words he knows, like 'Wo ist Ben-Buch' when looking for his favourite book and 'Bagger kommt!!!!!' whenever we see a digger that is on the move.

Sophie is still steadfastly trying to not speak German to me, but has started to laugh at her own reluctance. She's also spent a couple of hours being babysat by our German friend's daughter this past weekend and apparently only spoke German to her! Shocking, I know. I'm a bit sad that she won't do it with me - but I'm hoping she'll come around eventually.

I've also noticed that P has greatly increased his understanding of German. Ever since I've had this meningioma taken out, I've been feeling so much better and have had the energy and wherewithal to try to speak as much German to the kids as possible again. This, of course, has the unpleasant side effect of excluding P from some of our conversations - but it turns out that he's been benefitting. He seems to understand a lot more German these days and even had a bit of a conversation with my mom on the phone the other day. And best of all, he sometimes also tries to speak German with the kids. I hope this helps them, as well as him.

I'm also making more of an effort to find other German-speaking people with little kids for us and am in the process of reviving the German parent's group I've been part of for the last few years. We started out with a lot of energy, which then fizzled pretty quickly. By the time I had Owen, the group was pretty much in tatters and nothing much was happening anymore. And me, I haven't even had the energy to try to keep up with the group after I've had him, let alone join or organize any activities.

A newborn and a toddler in the house was my excuse for not having any energy, but I think as much as that took out of me, it's been mainly the (at that time undiagnosed) meningioma that's been holding me back. I had decreasing levels of energy since I had Sophie, but it got really bad during my pregnancy with Owen and continued to go downhill after he was born. It's only now - nearly 7 months since the meningioma's been removed - that I'm beginning to do stuff again.

Hence project 'Revival of the German Parents Group'. I started a couple of nights ago with a pub night and about 75% of the membership turned up. I was shocked, but really, that's not a bad turn-out! So far, people have been reluctant to discuss meetings with the kids (odd, since this was really the point of this group), but I've got my hopes up. Maybe the adults need to get to know each other better before they are willing to make the effort with their kids in tow. But what's really odd about this whole thing is that I've never been a social convener of any kind - I'm an introvert, for crying out loud, I don't organize get-togethers with a bunch of strangers! It was fun though, so I may have to do it again :)

Anyway. If this group won't be revived after all, there's another one we're about to join. It seems to be more established and holds monthly outings for parents and kids. They, unfortunately, don't act as a resource at all, but at least they go out and do stuff. P is still a bit reluctant about joining in, but apparently they have cake at every outing and that might get him a bit more interested. Chocolate has always been the way to his heart :)

I hope that all of this will be good for all of us. More bilingual friends for the kids (and maybe us), some fun excursions, and some more connections with the world around us. And if the rest of my little family will learn to be more fluently bilingual in the process, then so much the better.

Craniotomy - Continued

2009-03-17T12:22:00.012-04:00

For the first part of the craniotomy story, go here.

---

So my craniotomy lasted 10 hours, from about 7:30 in the morning to around 5:30 at night - plus the guiding MRI and other medical stuff they did beforehand. A long day, to be sure, though maybe not the hardest one for me in this whole experience.

To access the darn tumour in its midline frontal lobe position, they shaved a narrow strip of hair, and then cracked open my skull from just above the right ear to just above the left ear, a bit behind my hairline, right across the top of my head. They took out a piece of skull (also called a bone flap), my entire forehead to be exact, to be able to get to it. My stomach is turning just thinking about that, but it's a good thing some of us are not quite so squeamish :)

I don't know much else about the day, aside from:

Dr. Hotshot sent a tissue sample of the meningioma to the pathology lab while I was still in surgery, and the results - benign! - came back long before surgery was over.
I was waving in and out of consciousness while in the Recovery Room, but was awake enough to know that the person in the bed across from me didn't make it. There were a few 'Code Blues' and I remember people rushing in and it ending for whoever that person was (and this is most likely true rather than a drug-induced hallucination since P confirms that this person wasn't doing so well and needed a lot of medical attention whenever he was in the Recovery Room with me).
They kept me in Recovery for much longer than normal 'cause all my docs had gone home and there was no one there to release me out of Recovery into Neuro-Step-Down. Eventually, they tracked one of them down, and I finally could be taken to the other unit. I remember the ride to Neuro-Step-Down - I felt so wonky and got dizzy from being wheeled around corners. It felt almost like riding a roller coaster. I only got to my room
around 10:00pm that night, but I was sitting up, talking to P for a bit. I was high on something and consequently very excited and more talkative than I normally am. And way more excited and talkative than what P expected after such a long surgery. A surgery that could have caused so much damage.... He was quite relieved that I seemed to have it together enough to talk to him and make some sort of sense. I don't remember any of the details of what we were taking about, but I do remember talking a lot, being very happy, and thinking to myself "This brain surgery thing is easy!"

Little did I know of what the immediate recovery was going to involve and how much the drugs were going to screw me up, but that night I just enjoyed being alive.

You Go, Girl!

2009-03-15T14:47:00.002-04:00

As it turns out, little Sophers has a bunch of feminist ideas in her head :)

We were singing 'Rudolph, the Red-nosed Reindeer' last night before bed since she's already excited about next Christmas. She still remembers all the words, though has decided that the song is about a "girl reindeer" called Sophie (what else?). This, of course, means that we have to change all pronouns and the like.

But most importantly, the line "You'll go down in history" needs to be changed to "You'll go down in herstory". 'Cause you know, "The song is about a girl Mama! If it's about Owen, we can call it history, but it's about a girl, so it's herstory, right?"

Right.

D-E-F-I-C-I-T

2009-03-12T15:13:00.001-04:00

There it is, in all it's ugly and brutal honesty - the term used to describe any and all effects caused by brain trauma, a brain tumour, and/or treatment to get rid off it.

Here I am, just over 6 months after my meningioma was surgically removed, and I'm still not (yet?) used to using this word to describe my own circumstances, or those of anyone else I've come across since I've been diagnosed. It just sounds so harsh, and I guess I haven't had enough time to digest and accept that yes, I have had a brain tumour and yes, these buggers can cause immense long- and short-term problems. And yes, these problems are deficits, something that you can no longer do, or something you now need to do in some sort of modified manner.

I know that I am not exactly how I used to be before I ever got into this mess. Yes, I still feel much better than I have for the last few years before my meningioma was found, and the difference between now and 6 months ago is absolutely stunning. In a good way.

But.

I no longer have a sense of smell. That's completely gone courtesy of the meningioma. A permanet deficit, although I'm still holding out hope that my neurosurgeon hit it right on the nail when he said my tongue would learn to take over some of the functions smell has. Not much has happened yet - though when I was at a play barn not too long ago to entertain the kids, my brain did register that the air was somehow odd when we visited with the pigs. Similarly with herbal teas and wine - I do get something, but it's no identifiable smell. Also, it's entirely possible that I get nothing and my brain is just fooling me into thinking there's something because I know pig barns stink and herbal teas smell nice (or not so nice, whatever the case may be). In the first few weeks after surgery, for example, I smelled some things quite vividly - it was only when I figured out I "smelled" what I saw that those phantom smells disappeared.

I also have blind spots in both eyes. I don't even notice them and they may or may not be permanent, the verdict is still out on that one. The most important thing for me is that the removal of the meningioma, which was causing me to go blind, has not only stabilized my vision, but has actually improved it to the point of me being allowed to drive again.

Emotional instability is also still a bit of an issue, though maybe this is getting better again, I'm not sure. It seemed to ge going downhill for a while, but these days it seems a bit more under control. Not entirely back to normal, but my hope is that this is, in fact, still healing and will improve over time.

Short-term memory is a bit questionable as well. If I have a problem, it's quite mild I think, but I recently have been reminded about a conversation that I had and that I don't at all remember. There's absolutely nothing that seems familiar about this conversation at all, but I'm sure that my friend is not making it up. Maybe it's entirely normal that I don't remember any of it, because the conversation was not about anything important. However, I still find it odd that I get absolutely nothing from memory. So I guess we'll see.

On the whole, I now know enough about meningiomas and the trouble they can cause to realize that I've been incredibly lucky. Everything that's going on with me still are relatively small potatoes compared to what I know is happening with other people.

And really, considering what could have been, all of this is a small price to pay.

Edited March 13th, 2009: If you want to hear about someone who's got reason to complain, check out Jinx's story on her neuro-psych testing. Holy cow, is all I can say.

She'll Always Be My Baby!

2009-03-11T08:59:00.003-04:00

So Sophs got annoyed the other day when we were reading a book, a book she had picked out, that was asking her too many questions. Questions such as "How many blue squares do you see in this picture?" or "Which is your favourite ornament, and what colours/shapes are on it?" Sort of age-appropriate I'd think, though from her reception to the whole thing way beneath her.

'Cause all of a sudden, she hollered "MAMA!!! Why do you always ask me all these questions???? I don't like that!!"

I tried to explain to her that these questions were in the book, that it was fun, and that it was a good way for her to show me how smart she is. That kind of thing.

So she says,

"But Mama! I'm three already!
That means I already know everything!!!!"

They really grow up too fast.

Neuroplasticity On The Radio

2009-03-09T15:28:00.005-04:00

Not as in-depth as I'd hoped, but well worth a listen if you don't know much about how your brain can change and how you might be able to help it do so.

Building Better Brains (on Science Radio For Thinking Species, 50 minutes)

If ever I have more than a minute here and there, I'll still need to look into my own situation and figure out how neuroplasticity might be at work re-routing my lost sense of smell to my tongue. I'm still quite interested in this whole thing.

And it's also good to see that Dr. Mike Merzenich, a neuroscientist, has taken up blogging again. Obviously, he's got the expertise I lack. Always mind-opening to read up on what he's got to say.

Maybe This German Thing Is Going Somewhere!

2009-03-06T10:52:00.007-05:00

So, lately Sophie has been making great strides in becoming more fluent in her bilingualism by speaking German. As has Owen, in his own little toddler way. Makes my heart bounce and gives me re-newed energy to keep up speaking German with them as much as is practical. And, of course, it gives me re-newed hope that eventually, they will actually be able to speak it, rather than continue to only have a passive knowledge of it.

So here's the latest progress:

Sophs and Owie share a room, for now anyway, and often 'talk' before one of them falls asleep or early in the morning before it's time to get up. That is, Sophs talks and Owie babbles with the occasional word thrown in. Both enjoy it immensely and we've never tried to stop them.

More recently, though, Sophs has has started to sing a German lullaby to Owie when he wakes up crying or even just cries out in his sleep :) It's very cute, and it's often enough to help him go back to sleep without one of us having to get up.

She remembers English songs much better than German ones, but these days that's not stopping her. So quite often, I hear her sing her own version of "Schlaf, Kindchen Schlaf" to Owie, or any of the other songs and nursery rhymes that come into her head.

Our newest bedtime routine also involves a couple of German bouncy games we do with both of them together. We've always been doing them on and off during the daytime, but recently it's become a favourite bedtime activity. Both of them now come running when it's time for this part of their bedtime routine. Sophie shouting "Hoppe, hoppe Reiter!!!!" and Owie screaming "Hoppe, hoppe!! Hoppe, hoppe!!!" and "Tick Tack" for their two favourites.

The other day, Sophie also spoke German on the phone to her old daycare provider and one of her kids - for the first time ever. And she's quite excited that they are coming over tomorrow since she wants to speak German with the two kids. Heh, we'll see how that goes, but I'll take what I can get out of her.

Owie still loves to say "Bagger!!!!" (digger) a lot and often laughs while he does so, but he's also picked up a few other German words. Like Milch (milk), Buch (book) and Schal (scarf).

We've also started to listen to German books on CD, and especially Sophie likes them a lot. We seem to listen to the same ones over and over, a bit tiring when we're stuck in the car for three hours driving out to the country to visit relatives - but really, whatever works!

I'm hoping that things will continue to improve. And now that I've got my energy back and have recovered enough from this unfortunate meningioma mess, I'm also trying to revive the German parent's group to which I belong. And we're about to join another German group that actually does meet monthly on weekends. Most people in that group seem to have older kids, but at least we'll try it out. Plus, Sophs will still be starting Saturday morning German JK this September and my mother is coming to visit this fall as well, greatly increasing the German content in their lives. Hopefully it'll make a difference.

So yes, we do have a budding bilingualist (or two) in the house, after all!

My Craniotomy

2009-03-03T14:22:00.004-05:00

August 26th, 2008, early in the morning, our little monkeys safely tucked away at their grandparents' place in the country side. Just P and me, still feeling like we'd been hit by a truck, silently together, both trying to be strong for the other, not knowing what was going to happen.

I was fairly calm going in, but still scared out of my wits. But who wouldn't be? It's not every day you go to the hospital to have your head cracked open to try to get a brain tumour out of there.

As out of it as I was, there were so many questions swirling around in my head. Like was I going to be okay? Was I going to have a stroke during the operation? Was I going to survive? What sort of problems would I have? How would P cope? Would he be fine? Would we be fine?

No answers - and then thankfully the big, efficient hospital machine took over. I needed to be processed, change into a fancy hospital gown, have my blood pressure taken and some other minor medical things done that I don't remember, have a guiding MRI to help Dr. Hotshot and the rest of the team during surgery, and then get onto the stretcher and wait to be wheeled into the OR. P was with me still at this point, but it didn't take long before a couple of the anesthesiologists came by for a brief chat. Somehow they even managed to make us laugh.

Though pretty quickly it was time for the business at hand - a quick kiss and goodbye to P, and off to the OR I was. Immediately, several people started working on me simultaneously doing various medical things. The anesthesiologists kept talking to me while already adminstering drugs to put me out. Whatever they gave me worked so quickly that I was unconscious before I even knew what was happening. Which is good, I think. Ever since receiving my diagnosis, I'd been feeling like a spectator to the whole thing, probably because I couldn't process that I actually had a brain tumour and that they were actually going to cut my head open to get the friggin' thing out.

Of course, being unconscious and all means that the rest of the day was easy for me, maybe not physically, but at least emotionally. It's poor P who had to stick around, fully awake and worried the whole time. My craniotomy was supposed to last about 6 hours and he was supposed to get periodic updates throughout. Just that no one ever came out to speak to him for those six hours - he was left waiting, not knowing a thing. When a nurse did come out to briefly speak to him, she just told him that the meningimoma was benign and that everything was fine, though more involved that what they'd thought. And yes, surgery was going to last a couple of hours longer.

Those couple of hours went by and P was desperately waiting for an update. None came. Not until a couple more hours went by, bringing the total length of the operation to ten hours. Finally, Dr. Hotshot himself came out, looking completely exhausted, telling P briefly that I was fine and that he could see me in the recovery room.

I can't imagine the relief he must have felt when it finally was over, and I don't envy him his part at all. I'm glad I was unconscious and didn't have to deal with the wait, and I can only begin to imagine what he must have gone through that day. Poor guy.

But there it is, a day that stands out in my memory as much as receiving the diagnosis from my wonderful neurologist that

"Yes, you have a brain tumour, a meningioma to be exact. But it's not all bad news, because meningiomas tend to be benign and we can usually get them out fully."

Or something to that effect.

-----
My craniotomy story continues here.

I Know Where I Stand

2009-03-02T10:37:00.005-05:00

So here's this campaign, grassrootsy as anything, trying to make a big splash. I'll be happy if it gets the debate going, that's for sure. The first atheist bus is now on the road in one city in Canada with maybe more to come.

The United Church of Canada, of course, more or less the opposite of a teeny grassroots-based movement, has countered the ad. Which is great, really, as it does further the debate - though you tell me why all they could come up with was stealing the original campaign, almost word for word. It's not like the orignial wording is all that great to begin with and you'd think there'd be lots of room for improvement.

Anyway.

And here's another religious thing: My very Catholic friend Mary attends Church regularly, is currently doing Lent - and firmly believes that atheists are immoral. Despite evidence to the contrary.

What I find odd is this:

She's praying, on an on-going basis, for some of our co-workers to get fired. If God is omni-present and omni-potent, I can see why people think he has time to pay attention to such, in the greater scheme of things, inconsequential prayers. What I don't get is how she can say with a straight face that atheists, like her future husband, don't have a moral backing and then turn around and pray for people to get fired. Shouldn't her own religious and hence moral upbringing (if you buy her point that people without religion have not morals) prevent her from wishing ill on other people?

Half A Year, Woo hooooo!!

2009-02-26T08:49:00.006-05:00

Had you asked me 5 1/2 months ago or so, a couple of weeks after my thankfully very skilled Dr. Hotshot resected my meningioma whether I'd still be around now, let alone feeling much better than I have in a long time, I'd have been quite convinced in saying "Nope, though maybe in an institution if I'm lucky!"

Hard to believe, huh?

And I'm not even kidding about this. Back in the day when I was still hopped up on steroids, I spent my many wakeful hours during the night convinced I'd have to move to some sort of institution to enable P and the kids to lead somewhat normal lives. Other nights I was quite convinced that I was to stop breathing at some point during the night, and I begged P to have them pull the plug on me and not let me become a vegetable. Most disturbing, though, was my strong conviction that each night was going to be my last and that I wasn't even going to make it to a breathing machine. Even when I assumed to be quite clear of the steroid fog, I had many 'visions' of P wearing the blue wintercoat he had when we first fell in love, walking away from me with Sophie on one hand and carrying Owen with the other, all three looking back at me and smiling sadly. Each morning I was shocked, absolutely shocked, to still be alive.

Oh yeah, those drugs your brain needs to help reduce the swelling caused by the meningioma having set up shop in your head and the craniotomy to get rid off it can do quite a number on you. They sure did on me - and I'm still trying to figure out whether this was because I don't ever take drugs and my body is not used to their effects, or whether I was just particularly 'lucky'? I read somewhere that about 10% of people on dexamethasone/decadron have more severe side effects than most, and based on what I know from others and their experiences I really wonder whether I maybe fell squarely into that group.

But anyway, I am drug-free and no longer have to put up with this sort of thing. And yay for that, really!

I'm mainly feeling back to normal, though I still have a bit of a numb skull and don't always sleep like I should. But those are minor details compared to where I have been. I now have time to worry about my hair growing in weird - well, I don't so much worry as make fun of it. The thing is that both my kids had funny hair from birth to about 10 months of age or so (Sophie's was standing straight up and Owie had a mohawk) and I, of course, blamed this on my husband's genes. But I guess it's really been my fault all along :)

But yeah, my sleeping is almost back to normal and I mainly sleep through the night regularly. Hooray for that, it really makes a big difference. I still feel like I am way behind with my sleep, though, and I probably am, given that I've been wired for 4 months or so and basically didn't sleep more than a few hours each night, sometimes a lot less. As a result, I still need to go to bed quite early and don't often make it past 9:00pm. That takes some getting used to, but it beats not sleeping, that's for sure.

I've also started back up on the Eliptical and am back to Tai Chi. Admittedly, I don't go on the Eliptical as often as I should, but I do go every now and again. If I didn't find it so boring, I'd probably go more often, but maybe as I get back into the swing of things, it'll become more of a habit. Tai Chi on the other hand, I can't get enough off! I gave it up a few years ago when we started house hunting and bought a fixer upper while I was pregnant with Sophers. That pregnancy, of course, was accompanied and then followed by home renovations, endless nursing, another pregnancy that came with severe tailbone troubles related to having babies the size of small elephants, and more nursing while already suffering the consequences of growing a large meningioma in my head. I had so little energy, I barely got through the day. And I was definitely not thinking about taking it up again. Now I'm finally well enough to be able to do it - and enjoy it. A lot! And it sure is nice to get back to something you love. Plus, it gives me one night out of the house, something I've really been longing for.

So far, so good.

On of the issues I'm still grappling with, in a fairly big way, is the good old emotional instability stemming from frontal lobe trauma. I guess I was so out of it early on after my craniotomy that surviving drug side effects, getting stronger and dealing with things such as loosing my handwriting and my signature took so much energy and effort, that the emotional side of things was hidden in the background. Or maybe this is just something that takes longer to manifest itself, I don't know.

However, this is the one thing that has not slowly been getting better. Quite the opposite, it seems to plateau for a while and then slowly get worse. Thankfully, it's far from me just bursting out in tears for no reason, but the frequency with which it happens is not exactly going down either. I am also beginning to wonder whether the strong adverse reaction I had at my last MRI really was due to left-over steroid effects, as I have been assuming. It seems more likely now that it was my messed up frontal lobes, or maybe the drugs added their part to whatever issues were due to frontal lobe trauma?

Once again, I'm looking for answers where none are to be found. Nonetheless, it's useful to remind myself that even though six months is a bit of a milestone, I'm really not back to where I want to be. And from those who are years post-surgery, I hear that anything under two years really still counts as 'early recovery', especially so when it comes to the frontal lobes.

Aside from the emotional instability, the other major issue is that I am still way more restless than I've ever been. This goes to the point of finding it hard to even sit still. This has never been a problem in the past, and I used to be able to sit and read or knit for hours, for example, and enjoy it. Now, I find it hard to concentrate on a book for even half an hour, unless I'm totally mesmerized by it.

It's a bit ironic, really, 'cause reading for pleasure is something I've missed ever since my kids started demanding pretty much all of my time. They are still so little and needy, and I've just not been getting around to reading much. Now that they are a bit older, every once in a while I'd actually have the opportunity to read a chapter or so - yet I find it hard to concentrate on it. This is quite disconcerting, though it didn't happen to the last couple of non-fiction books I read. I was so into them that I tried to sneak a page whenever I could :) I guess there is hope, and I guess I do need to keep reminding myself that I must be patient.

I am also thinking (or hoping, at least) that Tai Chi will help with the concentration and patience issues. When I was doing it before, the instructor always mentioned it had such benefits, though back then, I didn't pay too much attention to these sorts of things. I had gotten into it to help with stress and some back pain (and it did), not with concentration and patience. Now, of course, I am paying attention.

Related to the above, I think, is the fact that I also haven't found my balance yet. Not my balance in a physical sense, but my balance as a state of being or a state of mind. I'm not entirely sure how to describe this even, but I just feel a bit off. Frontal lobe damage affects personality in subtle ways - it did before my meningioma was ever diagnosed, and I think it still does now. And I'm probably mourning the - hopefully temoporary - loss of the old, while living with this new state of things.

What's interesting for me in all of this is that my focus seems to have shifted away from the physical healing to the issues that are a bit harder to get at.

Being overly emotional impacts me. Knowing that my kids have been impacted by this mess has a huge impact, even though I'm dealing with it as best I can. Wondering whether things will ever go back to where they used to be plays with my mind. Not being able to just sit and enjoy the morning paper without feeling the urge to get up and do something seems strange. And of course, the big question is am I ever going to be me again, totally me, not a me that's a bit off?

Time will tell.

Whoa, Where Did This Come From?

2009-02-22T20:26:00.003-05:00

Sometimes my big Doodlebum really surprises me, like this morning when I was going to write a card to my mom to be mailed along with some art work from the kids. Sophers decided that she wanted to tell me what to write on the card, and here's what she said, word for word, and highly questionable gramatically. But it's in German! The language she still claims she cannot speak :)

"Danke Oma für die Gummibärchen, die Karte, die CD, und die Buch 'Connie geht zur Schule'. Ich kann manchmal meine Hose aufmachen. Letztes Wochenende waren wir Schlittschuhlaufen und ich hab' meine Wange wehgetan. Ich hab' Angst gehabt. Owie hat mich gebissen. Auf'm Bauch. Ich hab' geweint. Gestern hab' ich gelegt auf'm Boden, und Papa hat mir gesagt "Whose bum is this on the floor??!?!? Tschüß, Sophie."

[Thank you Oma for the gummibears, the card, the CD, and the book 'Connie geht zur Schule'. Sometimes I can open my pants by myself. Last weekend we went skating and I have my cheek hurt. I was scared. Owie bit me. On my belly. I cried. Yesterday have I layed on the floor, and Papa told me "Whose bum is this on the floor??!?!? Bye, Sophie."]

Gramatically it's not so good, admittedly, but otherwise she did a fine job I think. She could have done much better in English - gramatically, better transitions, and longer sentences, but it wouldn't have been perfect either. I'm pretty sure she'd have said "Owie bited me", for example. I actually find it a bit odd that in German she knew how to build the past tense for 'bite', given that it's also an irregular conjugation. Also, her German sentence structure is a bit off at times, but she still gets her point across. This is not a problem she usually has in English.

Interesting. And I'm hoping for much more. She seems to understand now that she speaks two languages and that her German cousin only speaks one language. At least she was quite pleased with herself when we talked about cousin Hanna only speaking German and having to learn English in school. We also talked about using German a bit more with me and Owen to which, shockinlgy enough, she agreed - though there's been no follow-up just yet. And seriously, I'm not expecting any, given her usually quite strong conviction that she doesn't speak German. But I can live with this.

She's actually known for a while that she speaks two languages, and has quizzed me on it regularly. As in "Why do you speak German with me, Mama???" and "Papa can't read this book to me because it's in German, right?". But it finally seems to have sunken in that speaking two languages might be a good thing, that it's something special, and that not even her older cousin (to whom she looks up, of course) can do this.

This, I think, qualifies as progress.

He Has The Power

2009-02-17T20:55:00.005-05:00

... to rip out my heart, to stomp on it, and to shred it to pieces, repeatedly.

'He' being Owie Kapowie, showing in his own (almost) toddler ways that Mama having been sick all summer sucks and that he didn't appreciate being cut off from nursing almost overnight. Probably also that it was not right that he and big sister Sophers had to be with their grandparents who live three hours away for a month so we could deal with the worst the steroids had to offer without freaking the two of them out completely. As they would have, had they been around to see me be as bonkers as I was while under the influence.

I've been quite amazed as to how well they seem to have taken the whole meningioma mess, though I know it's been hard on them both.

Sophie was so relieved when we finally went to pick them up that she cried and couldn't stop for quite some time. And then of course, she pretty much hung off me for the next couple of months - sleeping with me, sitting on me, running upstairs for me to get whatever I needed 'cause she'd noticed I was so weak I could barely make it up the stairs in the first bit after my craniotomy (beware, this is very graphic!).

Owie, though, went the other way and didn't want to have anything to do with me and hung off P. And being so little and unable to talk about anything, he cried whenever I came near him and whenever P left him alone with me. That was tough, really tough, but once things returned to some sort of normal and we all got used to each other again, this got better and better. Now he's usually okay with either one of us, though when he's tired or hungry or not feeling well, he still quite openly prefers P and screams at me. I am still trying to think that with time, this will get better and eventually things will go back to normal. But after yesterday, that's become much harder to believe.

He was feeling fine as far as we could tell and was quite happy to snuggle with me in bed in the morning after he woke up. But after breakfast, things just went haywire and he wouldn't have anything at all to do with me for the rest of the day. He wouldn't let me pull him in our red little wagon when we were out walking by the lake. He wouldn't play with me, or let me read him a book. There was nothing I could do to make him comfortable. Every time I tried, he screamed louder.

My heart just broke, and I'm still not over it. And of course, my emotional instability issues came to the forefront... those darn frontal lobes, sometimes they do drive me nuts!

I know that none of us asked for me to get sick and to eventually be diagnosed with a meningioma. We didn't ask to have our whole summer and some of our fall taken up with this brain tumour mess, and we sure weren't planning on weaning Owie as quickly as we had to when I was put on meds back by the ophthalmologist who (mistakenly) thought I had papilloedema. We never wanted for him and his sister to be away from us for that long - and even when we packed their stuff, we packed for a week and not a month.

But there's stuff they don't tell you when they sign you up for a craniotomy. Like what side effects you can expect from the medications. Or that they can be way worse than the physical effects of getting over surgery as major as a 10 hour craniotomy. That you hallucinate and live with constant panic attacks. That you get overwhelmed when there's more than one thing going on at the same time. That you can't follow conversations for any length of time. That you don't sleep for weeks. That you get constipated for weeks. And of course, what no one tells you is how your little kids will deal with this. As long as you have someone to look after them, they are quite happy to send you off to surgery.

And I guess they have to - for I know that at least in my case there was no other option. And yes, I know that I'm much better than I have been in recent years. And I'm extremely happy and thankful about that. But the price we had to pay, have to pay, is high - and it's just not fair. I'm not complaining. I know I was extraordinarily lucky to have had a great neurologist who diagnosed me quickly, took everything I said seriously and hooked me up with a very skilled neurosurgeon. And I'm lucky to not have any problems worse than what I do have. But the effects this meningioma had on all of us are still there, and possibly will be for a long time to come. And that makes me sad.

I know Owie loves me, and I know he really bonded with P when I was sick and could barely look after myself all summer long. I know I wasn't there for him then, and I know that he's dealing with it as best he knows how. Yet, this more than anything makes me mad and sad, angry and frustrated, worried and unsettled.

He's my little boy, and he should have never had to deal with this. And same for Sophs - as mature as she is for her age, she's only little herself. I don't want to be melodramatic and blow things way out of proportion, but seeing my little Moppel scream when I try to pick him up or play with him breaks my heart.

Over and over again.

Life After Meningioma

2009-02-13T15:05:00.003-05:00

Is there such a thing? I mean, of course there is, but will life ever be 'normal' again? Is this always going to be hanging over my head? Whether or not the 'little something' on my post-surgery MRI is scarring or left-over meningioma, will I ever have the peace of mind I had before any of this ever happened? Will I not always hear a little voice nagging me "It's your brain again! It's got something growing on it!"

Things I took for granted once have become questionable.

Does feeling well equal being well? What if I somehow feel a bit off again, like I did in the past few years leading up to diagnosis - will I not be convinced the meningioma is back or I've got another one, whether this is actually the case or not? Will every mole hill become a mountain?

What about keeping this blog, mainly about meningioma these days? Is it actually helping me by getting stuff out or is it helping me getting stuck in the past? Or am I impatient and feel the need to move away from all things meningioma before I really should? After all, healing is not quite done and according to something I've heard today from another frontal lober, won't be for at least 3 - 4 years. Oh what fun that's going to be.

Anyway. Good thing we've got a long weekend coming up - some quality time with my little family might be all I need :)

Overheard On The Tobagganing Hill

2009-02-08T15:25:00.001-05:00

"Alexander!!! Look at this little kid (pointing at my Sophers)!!!!!!! She can pull up her sled all by herself!!! What are you doing?????? Don't be beat! Dont be beat, Alexander!!!!!!!!"

Yes, I was proud of my little doodlebum for managing to pull up her sled all by herself, and for making sure she was out of everyone's way by taking a path away from all the other little kids who were eager to come down the hill. And I was proud of myself for letting her, 'cause you know, this was her first time on the tobagganing hill and she's only three and half. But I'd also gone down the hill with her before and explained to her how to best go about getting back up when she asked whether she could do this on her own.

And what does this guy do? He bullies his kid and makes him feel bad. And really, what's with the competition??? These are little kids having fun. At no time did this guy explain anything to poor Alexander,who's only a year or so older than Sophs. And what I want to know is this.... did he yell at his son because it was a girl that was "beating" him?

I came close to calling him on it, but I decided not to. I didn't want the grief, and it was more important to me to explain to Sophie that this man was not yelling because she had done something wrong.

But really, what is wrong with people???? Though I guess this is why our schools have programmes such as this, to help kids like Alexander not turn into bullies himself. And yes, Sophie and I participated way back when she was a wee baby and I hope both her and Owie will have the benefit of participating once they are in school themselves.

Go Green!

2009-02-06T12:26:00.003-05:00

I know some of us are doing what we can to reduce our carbon footprint, some of us think we're doing what we can, and others don't care to do anything to help our planet along.

But here's the thing. Going green is not that hard and not necessarily that expensive. It might even save you money, at least in the long haul. And if nothing else, think about your kids and your kids' kids. How do you want them to live?

I must admit that I'm not as committed as some people are, but we do our share at my house.

We've got the energy efficient car and we don't idle;
We take public transportation;
We walk;
We use stainless steel water bottles and I have a refillable coffee cup at the office;
We drink tap water;
We have a programmable thermostat that is set to lower the temperature to 16C when we're not home (in winter) and to let the house heat up to 24C (in summer);
We don't overheat and we don't overcool, we use the AC as little as possible;
We've switched our energy over to green power and hey, I'm lobbying my employer to do the same (unless they are willing to get off the grid entirely and install a geothermal system, a windmill or solar panels, that is);
We take cloth bags to the grocery store;
We compost;
We recycle;
We freecycle or donate stuff we no longer need;
We turn off the lights;
We buy/have energy efficient appliances;
We have a water efficient toilet;
We use the curtains to keep out the sunlight in the summer;
We only run the dishwasher when it's full;
We don't always eat meat and are currently trying to reduce our meat consumption even more;
We unplug appliances we don't use a lot;
We pack mainly litterless lunches;
We rarely ever use disposable dishes and/or cutlery;
We have a manual lawn mower;
We set our hot water temperature to something quite low (can't remember what);
We don't run the tap when we brush our teeth; and
We recycle our christmas tree and use LED lights both inside and outside the house.

I hope we do more, but I can't think of anything right now. I also know that we've got a ways to go in making the house more energy-efficient - but unfortunately, that will have to wait until we no longer spend more on daycare than we spend on our mortgage.

And maybe this will inspire us to find more things we can change right now?

Yet More Evidence

2009-02-04T11:04:00.005-05:00

So, the girl child, I can't yet bring myself to refer to her as a pre-schooler even though she'll be going to JK as of September, still is convinced that she speaks no German. At all. She understands it very well and knows the difference between her two languages - yet she continues to be a firm believer in her absolute inability to speak it.

Even though she often tells Owie "Mach die Tuer zu!!" (Close the door!!) when the obsessive little punk opens up all the cupboard doors once again. And even though she's now capable of leaving voice mails for her 'Deutschland Oma', with just a little bit of coaching from me (which she also still needs when she wants to leave messages for her English-speaking relatives).

It's funny how those little brains, still under construction I know, make sense of the world. 'Cause really, how can she continue to believe she can't speak German when, in fact, she does and knows she does?

She'll also be starting Saturday German JK in the fall, and I sure hope that will help her get over this little 'misunderstanding'!

You've Got A Meningioma, In Technical Terms

2009-02-01T10:08:00.001-05:00

So here it is, my diagnosis from the MRI report. Actually, it's not the report for the initial diagnosis (that was done at another hospital on August 11th), but this is from the MRI I had immediately prior to my craniotomy to remove my "most likely benign meningioma" (thankfully pointed out by both neurologist and neurosurgeon) on August 26th. And I assume it says exactly what's in the original report, given that there only were two weeks inbetween the two of them.

COMPARISON STUDY: Outside imaging dated August 11, 2008.

TECHNIQUE: Multiplanar, multisequence MR imaging of the brain was obtained both prior and subsequent to the administration of IV gadolinium using the WAND protocol.

FINDINGS: Again seen is a midline extra-axial lesion in the inferior frontal region. This measures 5.4 x 5.7 cm. The lesion is isointense to gray matter on both T1 and T2 sequences and demonstrates diffuse, homegeneous enhancement. There is mass effect on the adjacent bifrontal brain parenchyma, as well as compression of the frontal horns of the lateral ventricles. There is marked bifrontal vasogenic edema surrounding the mass, as well as extending posterolaterally into the left temporal subinsular region. This is resulting in mild mass effect on the adjacent left-side basal ganglia and mild compression of the left lateral ventricle with slight dilation of the right lateral ventricle. The degree of mass effect is unchanged from previous. At the level of the corona radiata, there is approximately 5 mm of right midline shift, also unchanged from previous.

No other significant abnormalities are identified.

INTERPRETATION:Stable frontal midline extra-axial lesion, likely an anterior falcine meningioma. Marked perilesional edema and mass effect are stable.

So there you have it, the whole entire truth in dispassionate, clean, and mainly incomprehensible medical terms. Good thing my neurologist was caring, calm and compassionate in giving me the news.

Of course, now I'll have to do some digging around in trying to translate all of this into English, but that should be possible thanks to this handly little Brain Tumour Dictionary I've come across somewhere.

I do get the basics from the report, like the type of meningioma and its approximate location, it's size (slightly bigger than they'd originally told me), the fact that it had caused swelling and squished the brain. The rest of it, I'm not so sure about just yet.

I am quite pleased, however, that "no other significant abnormalities are identified". Though it does make me wonder, of course, about the not quite so significant abnormalities they may have neglected to mention. I guess if I do have any of those, they'll come to light sooner or later, what with having regular MRIs and all.

Wanna See The Pictures Of My Meningioma?

2009-01-28T15:26:00.010-05:00

Me too! Not sure that's ever going to happen, but I'm working on it. I mean, I have seen them once, very briefly in Dr. Hotshot's office, but I really, really want them for myself. To look at them in more detail, and I guess just as some sort of memento from this whole mess. As macabre or freakish as it may sound, I can't help it and I'm just really interested in all of this.

So, in my quest to get copies of these pictures that were taken during my craniotomy last August, I have been all over the hospital and its affiliate where, as it turns out, all sorts of medical information is housed. I now have two of my MRI scans on CD, along with the reports that go with them. And I'm about to make an appointment to view the rest of my file, so I can maybe figure out whether my meningioma did have receptors for all sorts of hormones related to pregnancy and nursing (prolactin, etc.).

Both my lovely neurologist and Dr. Hotshot had made reference to the fact that my meningioma, its symptoms and their timeline were so very exciting and that the scientists that study these things could barely contain themselves. Here's what my neurologist said when he phoned me to give me the news: "The researchers at Big Fancy Hospital will be very excited to get their hands on your tumour, but they are very good at this and they know what they are doing, so don't let that scare you!" As if having research done on the tumour after it's been removed would scare me... I mean, I'd just found out that I had a meningioma, a friggin' brain tumour, and I'm not sure there's much that's scarier than that. But anyway, he just is a very nice guy and looking back, I really do appreciate everything he told me. And really, he is the one that started me off on this quest to find out as much as possible about my very own tumour, but also meningiomas in general. Since my surgery, this has expanded to all things brain and led me to become interested in neuroplasticity. Not a bad thing for someone who's not been all that much into the sciences in the past.

Anyway. Back to the pictures.

I'm assuming the pictures were taken because they knew early on they wanted to study the meningioma, though I'm not sure, of course. It's just that when I tried to get my hands on them I made my way from one hospital department to the next and no one knew anything.

The ladies at the various Information Desks scattered around the lobby were all very friendly, but had a hard time believing such pictures existed. The people in Medical Imaging, the purpose of my visit, were, erm... not exactly on the smart side and for the first time since having been diagnosed with a brain tumour I was very tempted to use the old line "I've had a brain tumour, what's your excuse?????". It was frustrating and irritating to say the least. The woman behind the counter kept asking me "What pictures???" and upon hearing my explanation repeated "No! Nononono, we don't take pictures in the operation room! You probably had a CT scan during surgery and look, I've got your pictures from that one. You can have those." I politely explained once more that I wasn't looking for CT scan pictures and that the CT scan I had took place during a trip to the Emergency Room a few days after I'd been released from the hospital and definitely not during surgery. It went downhill from there and all of a sudden she turned out to not be familiar with the term 'picture' - "What do you mean, 'picture'? What is that?" Yes, that was fun. The firefighter in line in front of me had similar issues with her when she insisted he take MRI scans from his eye injury even though he had asked for scans of his shoulder. Anyway, I ended up with a very nice lady in Medical Records, who unfortunately, also didn't know where these pictures are housed and who also had never heard of them actually taking pictures during surgeries. At least she was nice and helped me figure out how to get access to my file without having to pay $50 for the privilege.

So I don't know what it is with these pictures. Do they really not take pictures that often? Do they not normally show them to patients when they do? Or do patients not want to see them or get copies of them? And of course, where do they find people like this lady from Medical Imaging?

So yeah, along with so much else having to do with the hospital, finding out about getting copies of those pictures has been quite frustrating. I know that you'd normally just phone your doctor's secretary and she'd know and be helpful - but this is not the case with this woman who works at Dr. Hotshot's office. Last time I talked to her, she took it upon herself to decide when I should have my next MRI, which is not even in the same season as what Dr. Hotshot had told me. So I really have no desire to ever speak to her again, but I guess I must. Or else give up on getting those pictures.

Five Months And Counting!

2009-01-26T08:23:00.001-05:00

I am sleeping again! This last month has been such a huge improvement over the first few months following surgery to remove my benign meningioma, that I'm completely flabbergasted by it all. These days, I go to bed and I fall asleep quickly and I stay asleep until morning. Not quite until the alarm clock goes off, so there are some issues, but still! It's amazing and I'm pretty much ready to break out the bubbly (well, almost)! Even those nights when I do wake up a few times have become much better - 'cause I go back to sleep right away and don't end up awake for an hour or two before getting back to sleep. Oh joy!!

I've had a couple of bad nights when I was awake for an hour or more, but that's probably more because both my little punks have been sick, not because my sleep rhythm is still completely messed up. Though what do I know.... when you get dents on your head nearly 5 months after surgery, it's hard to maintain any sense of trust in your body. Or your brain, for that matter.

Anyway, those black circles under my eyes are in the process of disappearing and things are definitely looking up. All in all, it's quite the contrast from last month's update when I finally managed to sleep through the night once and had more than a handful of really bad nights when I was awake more than I was asleep.

The only other sleep-related issue is that I no longer seem to be capable of being awake much past 9:00 pm. At least not since I've gone back to work full-time. It's a bit annoying, really, but I guess in the greater scheme of things it's not completely horrible. And I assume that as I continue to recover, this will go back to something approaching 'normal'. But even if it doesn't, I can deal. I know enough by now to realize that I have really lucked out in all of this. Well, not counting getting the bugger in the first place, of course.

Another on-going thing has been this frustrating emotional instability. Every time I think it gets better, something is sure to set me off and I end up crying my eyes out. So far I've been able to hide it from the kids, but it's really frustrating. It comes on so quickly over things that shouldn't be getting to me as much as they do, and I start crying very hard and then can't make myself stop. It drives me nuts, though I try to remember that everyone tells me it takes at least a year, possibly two, to get over brain surgery. I guess I should be glad it's only happened at home so far and never in public, or worse, at work.

Another thing still bugging me, of course, is the fact that the top of my head is still fairly numb. Not that any doctor ever told me any of this, but I've heard from others that this is normal - all the nerves that got cut for the craniotomy need to re-connect to make everything work like it should. Apparently, this doesn't happen overnight and it doesn't always work out, but it's too early in my case to determine which way this is going to go. I no longer get a lot of shooting pains up there and it no longer feels like I'm constantly being tickled from the inside. But it does hurt sometimes and it sure itches every now and again. Overall, it has gotten better, but it still affects the top part of my forehead and the entire top of my head.

The weird thing also is that some of these nerves seem a bit confused or have connected to something they weren't supposed to. 'Cause every time I touch the top left corner of my forehead, I feel it on the spot, but also on top of my head in a spot on the left side toward the back. It's a bit odd, but maybe this will get sorted out still.

Or maybe it's like I've read in my, so far only, neuroplasticity book - the nerves didn't connect to their exact counterpart and/or the brain just re-wired things in such a way that touch in one spot is felt in another? How this works is explained much better in the book, and I will try to do some more research to figure out if this is what's going on. It's more likely I'm completely out to lunch on this, given my utter lack of a medical background, but it makes sense to me. So there.

Anyway.

Up to now, this whole recovery business, or maybe the overarching theme of it, has been about patience, patience and more patience. It's been frustrating at times 'cause of course I wanted to be better immediately after surgery, or at least immediately after I got off the crazy-making steroids. But in reality, everything has very much followed the pattern of two-steps-forward, one-step-backward. Which may have been easier had these steps come as a sprint, rather than a very leisurely stroll. Which literally is what it was in the first few weeks after surgery. I remember one of the first walks I had on my own, just around my neighbourhood. And I was very pleased with myself when I finally was able to pass someone - never mind it was a woman who must have been at least twice my age and who was using a cane :)

What helped me was figuring out quite early on that slow and steady was the way to go, and that doing a lot of stuff on a good day was sure to be followed by at least one crappy day of low energy. And what Tina says is so true - you need to adjust the expectations you have of yourself and cannot compare the sort of immediate post-brain surgery you to how you were before surgery, or in my case, to me way before my meningioma was ever diagnosed. I actually did feel much better than I have in years as soon as I got off drugs, but I still didn't have enough energy and strength to do the kinds of things a 'normal' person does each day.

I'm okay now, mostly anyway, but sometimes it still amazes me that I can now (again) keep up with my two little punks. Looking back to the last few years before my meningioma was found, a regular day of family activities was entirely out of the question. I was way too stressed out (or so we thought) and what's worse, I had no interest in doing anything. This must be related to the frontal lobe area location of the meningioma, I think, given that this is the area in the brain that regulates the higher brain functions.

As explained by Centre for Neuro Skills:

"The frontal lobes are considered our emotional control center and home to our personality. There is no other part of the brain where lesions can cause such a wide variety of symptoms (Kolb & Wishaw, 1990). The frontal lobes are involved in motor function, problem solving, spontaneity, memory, language, initiation, judgement, impulse control, and social and sexual behavior."

"Frontal lobe damage seems to have an impact on divergent thinking, or flexibility and problem solving ability."

"One of the most common characteristics of frontal lobe damage is difficulty in interpreting feedback from the environment. Perseverating on a response (Milner, 1964), risk taking, and non-compliance with rules (Miller, 1985), and impaired associated learning (using external cues to help guide behavior) (Drewe, 1975) are a few examples of this type of deficit."

For me, one of the implications of all this was that I just didn't care if I provided a stimulating environment for my kids. Not that I thought about it in those terms or that there was any intent to it - rather, it was just normal for me to not want to do much of anything with them and I didn't get how wrong and 'not me' that was. Of course I snuggled with them and read them books, but anything extra was too much. I know it sounds horrible and it makes me feel as bad as can be, but I guess I was so far gone in terms of cognitive function that it seemed entirely normal to demand of Sophie that she play by herself (when she was just over two!) while I hoped that Owie would go to sleep. Just thinking about it now as I write this almost makes me cry, and that's not at all the intention of this post.

The point really is that I feel so much better now that I can and want to, yes want to, do stuff with my kids. Play hide and seek endlessly, get excited at every truck we see, bake cookies, play, snuggle, read books, sing and dance, do arts and crafts, wipe snotty noses, put a diaper on one doll or other, shovel snow with Sophie and her fire truck red snow shovel, bang heads (gently, of course) with Owie, and even let them have mac 'n cheese the odd time. And this, more than anything, is the most important thing to me - I once again am a (almost) fully-functioning member of my little family and I'm doing my very best for the kids as well as P, on whom this whole mess also took quite a toll. And I'm having fun with it, too, something I really haven't had in the couple of years or so leading up to diagnosis.

I know I can't ever make up for any of it, but I also know that it was the meningioma which turned me into a big old uncaring, grumpy sloth, and that it's not me who's really like that. I guess I'm in a bit of a reflective mood, but really, I'm trying to remember that I'm absolutely ecstatic as to how far I've come in only 5 months!

There's the recovery of a 10 hour operation, which was probably the easiest part of it all. There are the brain trauma-related problems I had. There's the drug-side effects which made me live in halucinatory chaos for a while, convinced I was going to end up in some sort of institution, if I was even going to survive that long. There are new things that still crop up, like the weird dent on my head - and who knows what else will happen? And then of course, there is the emotional trauma. Quite clearly, I'm not over this horrible mess that's happened to me and to my little family, but I'm working on it. From those who've been there, I've heard that it takes at least a year or two before the recovery is really done, so I'm not even halfway there yet - but as someone reminded me not too long ago, the worst is behind me!

And that's what I try to hang on to.

What's With The Dent?

2009-01-22T10:06:00.005-05:00

So, I've been reading from those in the know that dents around the craniotomy incision site are fairly common. Never having had such a dent myself, I thought it was curious, but really a minor detail in comparison to what could have been (and is, for some who are not as lucky as I seem to have been, so far anyway). What with people experiencing all sorts of memory issues, facial paralysis, balance issues, etc., etc. both before and after treatment for their meningiomas.

Well, now I've got a dent.

Not sure why this happened almost 5 months after surgery or why it happens at all, 'cause they normally do put the bone back when they are done and they are very careful to get it exactly right. I know, 'cause I've seen how they do it and Dr. Hotshot confirmed at my last appointment that the little bumps I can feel are some of the screws and little plates they've used to make it just right.

The dent is only on the top left part of my head, right around the incision. But I had one of those ear-to-ear craniotomies, so I hope that this new dent of mine is not just the beginning, but that this is it. It's not actually visible, 'cause it's behind my hairline, but I made my poor husband touch it last night and he became a bit freaked out.

Oh well. It doesn't hurt and from what I can tell so far it's entirely normal, but I may have to do some more research on this.

Here's The Timeline

2009-01-16T10:19:00.014-05:00

** timeline updated as of September 24th, 2009

I'm still trying to catch up with everything that has happened with me and my meningioma from symptoms to diagnosis to treatment to recovery. All the posts are a jumble, 'cause you know, life goes on. Luckily it does, but I realize that I'm not exactly writing about it all in a clear and chronological order. I could, if I really wanted to, but then it'd just become a chore and I wouldn't be into it anymore.

So here's the new plan:

I'm going to organize all posts (previous and future ones) on my very own meningioma story in this post chronologically and will update this list whenever I'm adding something new, or whenever I remember to do so, whatever comes first. That way, it'll hopefully be easier to follow along and make sense of it all.

This could all be a colossal waste of my time, or it could make things a bit easier :)

My Meningioma Symptoms & Diagnosis:

How could I have known? (up to August 2008)
Meningi... What???? (up to August 2008)
Pre-surgery MRI results (August 26th, 2008)
A year ago today I found out I had a meningioma (August 13th, 2009)

My Meningioma Treatment:

My craniotomy (August 26th, 2008)
More on the craniotomy (August 26th, 2008)

My Meningioma Recovery:

Update - two months after surgery (October 26th, 2008)
Getting my driver's license back (October 27th, 2008)
First post-surgery MRI (November 5th, 2008)
Returning to work (November 18th, 2008)
Update - three months after surgery (November 26th, 2008)
First post-surgery appointment with my neurosurgeon (December 8th, 2008)
More on the above appointment (December 8th, 2008)
Questions coming out of the above appointment (December 8th, 2008)
The hospital screws up my next follow-up MRI (December 24th, 2008)
Update - four months after surgery (December 26th, 2008)
I get things straightened out with the hospital (January 7th, 2009)
I get a dent around my craniotomy incision (January 22nd, 2009)
Update - five months after surgery (January 26th, 2009)
I go to the hospital to pick up my MRI scans/reports and to track down the pictures that were taken during my surgery (January 28th, 2009)
Update - six months after surgery (February 26th, 2009)
Update - seven months after surgery (March 26th, 2009)
Getting ready to go back to school (March 31st, 2009)
Update - eight months after surgery (April 26th, 2009)
Update - nine months after surgery (May 26th, 2009)
Follow-up MRI (June 9th, 2009)
I finally get my MRI results (August 25th, 2009)
MRI report from June 2009 (June 9, 2009)
Update - 10 months after surgery (June 26th, 2009)
Update - 11 months after surgery (July 26th, 2009)
My one year craniotomy anniversary (August 26th, 2009) and how weird it was (August 27th, 2009)

My Meningioma-related Deficits

Deficits (post-craniotomy August 2008)
A memory blunder (April 3rd, 2009)

Meningioma and My Kids

Owen (post-craniotomy August 2008)

All Other Things Meningioma

Will life ever be normal again? (February 13th, 2009)
If only the hospital considered things other than medical care.... (June 3rd, 2009)
Where I was at last year at this time (July 6th, 2009)
The Canadian health care system is not as bad as made out to be... (July 31st, 2009)
I get invited to a focus group to discuss quality of life issues after skull base surgery (August 5th, 2009)
What happened at the focus group? Part 1, Part II and Part III - The more relevant bits (August 9th, 2009)
Meningioma Conference coming up in Boston on October 3rd, 2009 (August 21st, 2009)

Stay tuned for more. I'll try to update this as I go along.

Keep in mind that symptoms, treatment and recovery change drastically from one person to the next, depending on the exact location of the meningioma, its size and whether or not you are symptomatic.

Neuroplasticity Is Everywhere!

2009-01-12T09:29:00.007-05:00

I guess it's no secret, I've become pretty interested in neuroplasticity. Not just for my own good, but I'm also trying to figure out whether this is something that could be beneficial for my little nephew with Down Syndrome.

Anyway.

Here's the thing that caught my eye... TVO is having "Mysteries of the Mind" week, this week! Parts of it are hosted by Dr. Norman Doidge, the guy who wrote the book which is bringing neuroplasticity to the masses.

TVO will be airing a bunch of documentaries related to the brain and the mind, some of it available for podcasts for those of you who don't receive TVO. And you can also ask a question that maybe, if you're lucky, will be answered by Dr. Doidge in an on-line chat.

Here's the question I sent in (an no, I don't think he's going to answer, but you never know):
I lost my sense of smell as the result of having a 5.5 cm meningioma. The tumour was removed last August (and had already destroyed my sense of smell by the time it was found), and at my post-surgery check-up, my neurosurgeon said that my sense of taste will learn to take over most functions my sense of smell used to have. This, of course, was before I ever heard the term neuroplasticity - but it makes me wonder now whether he actually was talking about neuroplasticity and if so, what the practical implications of this are for me? I.e., will I get a funny feeling on my tongue when a chemical smell is in the air, or will I even be able to smell with my tongue (like the blind guy in your book can see with his)?
Now I just have to figure out how to access this on-line chat since I really should be working at that time. Hmmmm. Decisions, decisions :)

Boys Will Be Boys!

2009-01-09T14:27:00.004-05:00

"Buggerbuggerbugger!!!!!!" screams my excited 18 months old. Constantly and with glee.

Too bad no one knows this is actually the German word 'Bagger' (digger), pronounced exactly like 'bugger'. Good thing he is small and cute, so he can get away with yelling bugger/Bagger at every car he sees. It's either that or "Truck!!!!!!!".

I wonder if this is a genetic thing, 'cause Sophers never was so single-mindedly interested in big machines that move. She wasn't particularly girly, not as much as she is now in that everything must be pink and she wants to be a princess (oh, where did we go wrong???), and her interests were just more varied at this age. Still are, as a matter of fact. But when she was his age, she learned animal sounds and barked "wauwauwau" (this his how the German dogs bark) at every dog we saw, she smiled at people and waved hello, she looked at everything we saw, that kind of thing.

Owie?

He's in paradise on garbage day and going anywhere takes forever 'cause we have to stop and admire all the garbage trucks loading up the trash. Going on the highway almost makes him jump out of his seat every time a truck goes by. Good thing he's strapped in, or there'd be a problem. And he quite obviously likes shouting "TRUCK!!!!!!" at every car, train, truck or construction vehicle we see. This has been going on for at least a month now, so it's good that he's added 'Bagger' to the repertoire. Makes it a bit more interesting to the rest of us :)

More On Neuroplasticity

2009-01-08T11:21:00.004-05:00

Further proof I have too much time on my hands..... but here it is. I've noticed a bunch of people coming here looking for "The Brain that Changes/Heals Itself" by Deutsch. You might have an easier time finding the book if you search for Norman Doidge or just go to the guy's website :)

And after seeing the documentary (based on Doidge's work), I bought the book. It's fascinating!

Oh. And you're welcome :)

Told Ya!

2009-01-07T14:23:00.004-05:00

Oh yes. I eventually did get a hold of Dr. Hotshot's evil secretary and it was quite clear that she had no intention of ever phoning me back to let me know that indeed, I do not need an MRI so soon after the last one.

She didn't quite agree that I can wait until August or September to have one, even though this is very much what Dr. Hotshot had told me, so I'm having one in June. Apparently there's something in my file that says I need to have these frigging things every 6 months.

Hmmmmmm.

I guess Dr. Hotshot is no longer all that confident that the little something on my first post-surgery MRI is just scarring. Plus, the secretary mentioned something about checking up on the residual meningioma.... That's not so much fun, but who knows what's going on. There's no point second guessing anything. I'll just hop in the tube in June and hope for the best.

At least I no longer have to worry about this coming Sunday.

I Don't Really Need This, Do I?

2009-01-05T12:23:00.003-05:00

So there I am, home from work early on Christmas Eve, excited about the upcoming week off and the fairly imminent arrival of Santa - and then there's a letter from the hospital's MRI department in our mailbox. Urgh!

Now, I wasn't supposed to have another MRI until next August or September, so my first thought was oh wow, look at how efficient these people are, already giving me my appointment so I know when not to be on vacation. But before I'd even opened the letter, I knew that I must be delusional 'cause really, getting this much notice would be way too easy.

I openend the letter with my heart pounding, 'cause you know, the last MRI gave me a pretty bad panic attack and I'd rather not go in there again so soon. But anyway, my appointment is supposed to be this coming Sunday. Not good at all.

I'm assuming this is a mistake that stems from Dr. Hotshot turning around his usual follow-up routine with me. Whereas he normally does a post-surgery follow-up appointment, first post-surgery MRI and then another follow-up to get the MRI results, with me he cancelled my first follow-up appointment 'cause he had to go fiddle around someone else's brain. I went straight to an MRI and then on to him - and when I did see him, I had to point out to him that I'd already had my first post-surgery MRI. Yeah, gives you a lot of confidence in your doc, doesn't it... but then again, I deal with clients, too, and I sure don't remember every detail about every single one of them. So I can forgive that. Anyway, he made it very clear then that I was going to need another MRI in August or September, and I tried not to worry about that yet. And after a few days, I didn't anymore.

Until the letter arrived.

But anyway, what really bothers me is Dr. Hotshot's nasty secretary. We've had issues with her in the past when I tried to get a sick note for work after surgery. Not only does she not ever answer the phone, she also prefers to not return voice mail messages. And she likes to change things around without telling you. Not helping when you're all drugged up and barely know what's up and what's down, but I got passed that. Yes, I can be the bigger person.

Sometimes.

Though I still wonder what the heck she does all day and why her number is given out to patients as the first point of contact.....

And now of course I need to speak to her to see whether I actually need this friggin MRI or whether they've made a mistake. I left her a voice mail after Christmas, when the office was open again. And yes, there was another holiday in there, but it's been almost a week and she still hasn't phoned me back.

I phoned the MRI Centre to see if they could do anything, but no. At least they phoned me back right away, though. And the very nice woman told me that doctors mess this kind of thing up quite a bit.

Anyone else wondering why the MRI wait times are what they are????

Grrrrrr!

Has It Only Been 4 Months?

2009-01-02T19:58:00.004-05:00

Well, it was 4 months on Boxing Day that I had my surgery to get rid off my friggin' meningioma. But what with Christmas and all, I'm running a bit behind. But really, it can't have been only 4 months since my surgery! It seems completely impossible to have come this far in such a short period of time.

I still very much remember when I was so drugged up for the first bit after surgery that I didn't know who I was, and what was reality and what wasn't. I remember that my little doodlebums were out in the country with my in-laws for an entire month, and that it sucked so very badly. I remember having panic attacks, more or less non-stop (drug-induced), and thinking I was living in complete chaos as nothing ever made sense. I remember. Not only this, but so much more.

But that's for another post.

The point is that my life is soooooo much better now that the friggin' meningioma has been taken out! I totally feel like myself again, only better. I have energy now. I can do stuff with my kids - and better yet, I want to do stuff with my kids. My head doesn't hurt all the time. I'm no longer bone-tired all the time. I have fun again!

So yeah, sleeping is still a bit of an issue, but I've managed to sleep through the night once! Yes, for the first time since I had surgery, and no, I've never had problems sleeping before. Immediately after surgery I was on a drug which came with many charming side effects, among them sleeplessness. Of course, being rather inexperienced at the time with meningiomas and brain surgery, I assumed I'd go back to my regular sleeping habits once I got off the drug.

Not so.

Even though things have been improving slowly with each step forward giving way to a few bad nights, I'm getting more sleep overall as compared to 6 weeks ago, but it's still nowhere near enough. It's wearing a bit thin, really, but I'm still hoping that with patience, things will go back to normal eventually. So yay for the one night of uninterrupted sleep!

I also still get overwhelmed every once in a while. Not nearly as often anymore as I used to in the first couple of months after surgery, but it still happens. Like when I come home from work, pick up the kids and get all their winter gear off, have Sophs yelling at me that she wants to watch TV while Owie is crying 'cause he hit his head on the dining room table, while dinner needs to be made and P is running a bit late on his way home from work. Sometimes I can handle this without a problem, other times I'm nearly in tears by the time P walks in the door. And yes, evenings are a bit stressful and I know it's understandable to get frazzled with everything that's going on. The thing is that I don't just get frazzled, but I start crying over it, too. And sometimes it takes a lot less than our evening chaos to get me all teary-eyed. The other day, it was a bit of a harsh word from Sophers - and really, she was only being a three year old and didn't even mean anything by it. Yet there I was, sobbing once again. It comes on so quickly and it's annoying, but I guess those are just the little reminders that I still need to take it easy. I didn't just have my tonsils out, I had a 10 hour operation with my head cut open from ear to ear. It sort of makes sense that it takes a while to get over.

Anyway. I do feel better than I have in a long time, but I know that I'm not fully back to normal just yet. I'm just amazed at how good I really am, even with the sleep issues and a bit of emotional instability here and there.

So thanks, Dr. Hotshot for cleaning out my head! And thanks mad scientist look-alike Neurologist for diagnosing me so quickly and being so on the ball with everything!

Brain, Heal Thyself

2008-12-24T09:13:00.006-05:00

Ever heard the term ‘neuroplasticity’?

No?

Me neither, until the other day, when I was put on to this documentary called “The Brain that Changes Itself”. (Thank you! You know who you are.)

I watched it last night, and wow! Apparently the brain can re-wire itself to the point that a blind person can see through sensors on his tongue, that a woman who’d lost her sense of balance can stop wobbling and that a man paralyzed by stroke can re-gain so much function that he can go back to his job as eye surgeon.

I’m not sure how widely available these treatments are, but watch and see if it might be useful to you! Sorry, the video might not be available outside of Canada, but I'm not sure.

And here are some other links on neuroplasticity:

Brain Plasticity - What Is It? (from Neuroscience for Kids)
Brain Plasticity - How Learning Changes Your Brain (from Sharp Brains - The Brain Fitness Authority)
Brain Plasticity, Language Processing and Reading (from Society for Neuroscience)
About Brain Plasticity (from On The Brain)

Lingering Questions

2008-12-22T13:29:00.009-05:00

Hello Dr. Hotshot, it was nice seeing you the other day and I'm glad you didn't have to cancel my appointment again because "something semi-urgent came up at the last minute" and you had to be in the OR during your clinic hours. Though I do appreciate that you phoned me the night before to save me a trip across town. I'm also really happy that you showed me all those pictures that were taken during my operation, especially the one of my meningioma. It's still really hard for me to believe that this happened to me, so seeing it in full colour made it a lot more real for me. If it's possible, I'd love some prints, but please don't make me call your nasty secretary to ask for those 'cause she scares me.

Anyway. Here's what I was going to ask you, but didn't get to 'cause you had no time that day. So, really Dr. Hotshot, any time you have a moment please have a look and answer what you can, I'd really like to know. And you don't need to worry, it's not freaking me out, I just really want to know. And seriously, I can't go to med school myself since I never liked the sciences too much and then there's that whole thing about seeing blood and dealing with weird things in people's bodies.

So, here we go:

Is it possible that I still have some lingering medication in my system? I’ve only ever been on dexamethasone and something to protect my stomach agaist the effects of the dexamethasone and have been off all drugs since mid-September. And I am ever so grateful to not have to deal with any of the horrible side effects anymore, but sometimes I still react in ways that very much remind me of what it was like while I was still on the drug. Like when I had my post-surgery MRI. Or when I wake up in the middle of the night and am wide awake for up to three hours with my mind racing. Or when I have a day on which I’m totally and utterly restless and can’t sit still, and that even though I’m normally one of the calmest people around. The reactions are not nearly as strong anymore and I'm not out if it anymore, but it still bothers me when I'm not entirely myself. I had a hell of a time when I was on that damned drug and I really don't want anything to do with it anymore.

The top of my head is still numb. How long does it take for it to go away? It has been getting better, but I'm a bit impatient with it.

Since my pituitary gland was not visible on pre-surgery MRI scans, I assume it means that it had been affected by the meningioma. I know better than to believe everything I read on the internet (gasp!), but is it possible that I didn't go into labour with my two very normal pregnancies because the pituitary was affected and couldn't release the hormones needed for labour? Did I not loose my pregnancy weight the second time around because my metabolism was all messed up (the weight is coming off now without me really doing anything, whereas before nothing was working)?

I know you don’t think I’ve had the meningioma for as long as I’ve needed glasses, but can you please tell me why my eyes are so much better that I can now, for the first time ever, drive without needing glasses? You didn’t give me laser eye surgery while you were at it, did you?

You said my sense of taste is going to learn to take over some of the functions of my dead sense of smell. What does that mean exactly?

I haven't slept through the night since surgery (and I never had sleep issues before). It has gotten better, especially so since I got off the dexamethasone, but I'm still lucky if I sleep for 7 hours uninterrupted. And I still have the occasional night when I’m wide awake for a couple of hours and then doze rather than sleep until the alarm goes off. Do I have to get used to this or will this get better? I'm trying to be patient, but this constant lack of sleep is wearing a bit thin, you know.

Did I really have a blood transfusion during the operation or did I fabricate this ‘memory’ while on the dexamethasone? I’m fairly sure P told me the day after surgery that I had a transfusion, but he doesn’t remember any of this. The thing just is that I know now all the other wild things that I totally believed in my drug-induced stupor where not real. This one seems to be a real memory.

Thank you.

And please consider taking more time to walk your patients through these types of questions in the future. I know it’s all routine for you and I know your time is valueable (at least no one else ever charged me $30 for a sick note!), but try to keep in mind that for your patients, there is nothing routine about this.

Thank you again. I really appreciate what you’ve done for me and would highly recommend you to anyone, though I sure hope that I won't know anyone in need of your services. Please don't take that personally.

And don't think I'm still delusional - though I was for a while, thanks to the dexamethasone. I know you won’t ever see this, but in case anyone else does and knows something about any of this, I’d be ever so grateful if you could leave it in the comments or email me.

Thanks :)

More On The Appointment With My Neurosurgeon

2008-12-18T11:10:00.002-05:00

So yeah, I had a bit of a disappointing appointment with my neurosurgeon a little while ago. I’m much better about the slightly less than perfect MRI results and am conscious of the fact that I’m so much better than I have been in years. And if there is another meningioma in the works for me, so be it. In the meantime, I’ll continue to count my blessings and enjoy life as much as I possibly can!

As for the visit with Dr. Hotshot, I had a, admittedly rather lengthy, list of questions to which we didn’t really get. No wonder, ‘cause the guy only had 15 minutes allotted to me – he must not have known that I’m a bit more important than that. Sheesh :)

Anyway.

He was happy to hear that I’m feeling great, but otherwise seemed more interested in teaching his student than talking to us. I’m all for teaching the next generation, but hey, all you superstar docs out there, some people skills would be appreciated by us mere mortals. Poking around people’s brains might be routine for you, but for the rest of us, it’s a bit of a wild ride.

On the bright side, he showed us some of the pictures they took during the operation. That was a wee bit weird, to say the least, but it was also oddly fascinating. Even P, who can’t watch ER without twitching and averting his eyes as soon as they show blood was staring at the screen in awe, and kept muttering “Holy Cow!”

We got to see my brain and even recognized it in some of the pictures – I guess those were the ones where some healthy brain was in the frame and not just the swollen mess around the tumour. We also got to see the drill going into my head for the burr hole and the piece of bone (my entire forehead, actually) that they took out for the operation. There also was a picture of my meningioma, in a pretty shade of purple, in all its glory. Looking at these pictures was a bit on the bizarre side, of course, but I’m quite glad we got to see them. I only wonder about just how you’d ever get into this sort of career – taking pictures of weird things growing in people’s bodies, I mean. Although I guess that’s not half as weird as cutting people open, drilling into their heads and trying to take weird things out. But of course, a bucket full of thanks to the people that actually do this, ‘cause who knows what would have happened to me had there not been anyone willing and able to take the bugger out.

We also got to see pictures of my MRI scans – some that we’d already seen before surgery and some of the more recent ones. It’s pretty cool what they can do these days – like showing you three-D images of your head and spinning it around so you can admire the whole thing from various angles.

Looking at the old scans really shocked me – I’d seen the meningioma before ‘cause Dr. Hotshot had shown us some of the scans when we first met to discuss what was going on and what he was going to do about it. Maybe it’s because my eyes were so bad back then or maybe it’s because I can’t remember clearly because I was so shocked from finding out that I actually had a brain tumour – but whatever the reason, I hadn’t realized just how big it was. And this time I also paid more attention to what was around the meningioma and could see my poor squished brain quite clearly. I guess the first time around I just saw the tumour (it helps that it shows up very bright on the MRI scans) and was too much of a wreck to pay attention to anything else.

Looking at the new scans taken a few weeks after the operation was quite interesting, too. Just a bit scary when the little something showed up. But like I said, I’ve gotten over myself and am not dwelling on it too much anymore.

And even though Dr. Hotshot didn’t really have a lot of time for me, I did find out a few things I didn’t know before or that I’d read on-line, but had now confirmed by him.

My meningioma had invaded the skull.
I’m not very likely to get another one in another location, though it’s not clear whether or not I might get some re-growth from the old one.
My kids are no more likely to get these buggers than kids who don’t have this kind of thing in their background.
My sense of taste might learn to take over for my lost sense of smell. This is what Dr. Hotshot said – though he didn’t explain exactly what that means. I’ve also heard conflicting things from others who have no sense of smell. I guess I’ll be doing some research on this when I have the time.
I shouldn’t be developing any neurological issues this long after the operation.
The vision in my left eye has gone from 20/200 just immediately prior to surgery to 20/40 (with glasses). In my right eye it has gone from something bad (I don’t remember, though it was something not quite as bad as my left eye) to 20/20 without glasses. Woo hooo!
This still puzzles me, though. Yes, my eyes were definitely getting a lot worse in the last bit before my diagnosis, and getting rid of the meningioma obviously reduced the pressure in my head and around my optic nerves to make my eyes better. We didn’t know whether my eyes were going to get better, since they couldn’t tell before surgery whether the optic nerves had suffered permanent damage. At my last check up with my optometrist, I still had blind spots in both eyes, and she said that they may be there for good, but she won’t know until I test again. Apparently, it can take a year or longer for these nerves to get over the trauma that had been caused by the tumour.
Anyway. The thing is that, in spite of the blind spots, my eyes are now better than they’ve been since I first got glasses. This is great, of course, but it leads me to think that I’ve had the meningioma forever (well, since before I first needed glasses anyway) – something that Dr. Hotshot doesn’t believe. He’s told me before that they can’t really tell how long these things are in people’s heads before they start causing noticeable symptoms, but now that he’s seen mine, he thinks it’s been there for maybe about 10 years. He’s the one with the medical training, so I’m tempted to believe him – but then again, he didn’t exactly offer another explanation as to why I am now, for the first time ever, legal to drive without glasses.

I’m glad I know what I know, but honestly, I wish he’d have more time to go over all my questions. Now I’ll have to see if I can get a copy of my file, so I can read up on stuff and maybe get answers to some of the things I was going to ask about.

There Is Hope!

2008-12-15T08:50:00.003-05:00

"Bald ist Nik'lausabend da, bald ist Nik'lausabend da!" -- that was Sophie this morning, singing, all on her own, a German kids' song about Nikolaus. He comes to our house, of course, but we haven't even talked about the man for the past week or so. And she doesn't normally sing German songs, especially not if she's only heard them twice!

And after she was done singing, she played a little German finger game with Owie!
"Es geht ein Mann die Treppe rauf."
"Klingelingeling."
"Klopf, klopf, klopf."
"Guten Tag, Herr Nasemann!"

I love it when she does things like that! Makes up for all the tantrums and crying fits she has when P is around. 'Cause you know, she still knows how to play him and is teaching Owen to do the same. But that's a whole other can of worms, one that I don't want to open right now 'cause I'm happy this morning.

Whoa!

2008-12-11T09:31:00.005-05:00

Here's a video I found that's quite interesting to watch (if you can stomach it). It's called Craniotomy Treatment for Meningioma Tumours - and that's exactly what they're showing and talking about.

I haven't been able to watch this kind of thing before, even though I've been wanting to ever since I made it out of my own craniotomy. I guess last night was the right time. It's not for the faint of heart, but to me it really is fascinating to see what these neurosurgeons do when they fiddle around your brain.

Aside from seeing the whole thing, what was most interesting to me was a comment one of the neurosurgeons made about a meningioma case with the tumour having been about 11 cm in diameter and taking up 40% of the space. Shocking, really. But I guess it also means that mine, which was 'only' about half the size of that one, would have taken up 20% of the space. It makes me even more interested and amazed at brains and the impossible healing powers they have. There they are, for years getting squished and attacked by these supposedly benign tumours and yet they manage to recover quite beautifully, at least in some, if not most, cases. Wow.

I may just have to go and look for more of those kinds of videos now :)

Now I Know

2008-12-10T10:59:00.005-05:00

A couple of days ago I finally had the first appointment with my neurosurgeon since he removed my brain tumour on August 26th. I don’t normally look forward to doctor’s appointments, but this one I really wanted, ‘cause I still have all sorts of questions about this whole meningioma mess. Also, I recently had my first post-surgery MRI and, of course, I was quite antsy to get the results.

But the whole thing was a bit disappointing.

The short story is that the good doctor didn’t have a lot of time to answer most of my questions and that my post-surgery MRI scans are not entirely what I’d hoped for.

My neurosurgeon had briefly talked to P right after my craniotomy, and said that he’d gotten the bugger out completely. Though he quite likely called it by its proper name, meningioma, and not ‘bugger’. He just is that type of person. Anyway. The results are not exactly ‘clean as a whistle’, which of course is what I’d been hoping for. There is a small little something on the MRI, which is either scar tissue or some left-over meningioma cells. During surgery, they found that the tumour had invaded the skull. And when this is the case, it is possible that some microscopic cells get left behind. And whatever gets left behind can start growing again.

Hmmmm.

That was a bit of a bummer, but all in all he seems very confident that it really is only scar tissue and nothing bad. He’s going to monitor it with another MRI next August and then we’ll take it from there.

I don’t much like having this hanging over my head, but I do know that he’s on the case and if anything happens, he’ll find it early. Meningiomas normally grow slowly, so if this is what it is, over the next nine months it shouldn’t grow to the size I had the first time around (5.5 cm in diameter). It would be found early enough so it hopefully wouldn’t require another craniotomy, let alone one that takes 10 hours again. Just in case anything was going to turn up, he listed some potential options, such as Gamma Knife and stereotactic surgery, but to me it seemed as though he really was pretty confident that it's scarring and nothing worse. It might be a bit easier for him to be so confident than it is for me, ‘cause he's in the know and besides, it’s not his brain we’re talking about. I'm still hoping to get to confident shortly.

And of course, I am not planning on ever going there again, but if I have to, I know I can. I know so much more now than when I was first diagnosed. And I know the outcome may not be entirely catastrophic. And from the sounds of it, if, and I think this is a big if, if anything happens again, I will have options. Last time I didn’t – it was surgery or I don’t know what, he didn’t really go there when he first assessed me. And I sure am not thinking about it now. I’ve got a life to live!

So yeah. I’m a bit unnerved by it, but I’ll deal ‘cause really, I don’t have a choice in the matter.

Heh!

2008-12-03T10:13:00.004-05:00

So here’s a little diversion from the recent meningioma talk around here…..

Our elected officials have decided to overthrow the government by forming a coalition made up of all opposition parties. Excellent news as far as I’m concerned, but then again, I’m not the conservative type so I won’t be sad to see Stephen Harper go. Not at all and the earlier the better is all I can say. I’m just hoping they can really pull it off.

So yes, I am a wee bit biased. But still.

I don’t get that everyone is upset at this 'undemocratic grab of power'. Erm, isn’t the first-past-the-post system way more undemocratic than a coalition could ever be? And hey, more people actually voted for the oppostion parties than voted for the current government! I realize that coalitions are a bit of a foreign concept in Canada, at least on the federal level, but come on people, just think about it!

With the first-past-the-post system we end up with situations in which the party who wins the most ridings forms the government. This party does not necessarily have the majority of the popular vote. You tell me how this is democratic. Take my own riding for a more local way in which this plays out – unless you’re supporting the NDP, you might as well not vote. There’s no way that anyone else could possibly ever win, so all those people who’d rather have someone else as their MP are out of luck. Is that not undemocratic?

We also end up with situations in which a party which only runs candidates in one province can (and has) form the official opposition. Democratic? I think not. Even the current government… it doesn’t have a single elected MP in my area, it doesn’t have a lot in my province and the same is true in some other provinces. Not exactly democratic either.

So now we have a minority government, again one that has not been elected by the majority of the people. And we have three opposition parties that have agreed to work together to form a new government. It won’t be perfect either, if they can pull it off that is, but I don’t get how this is any more undemocratic than what we currently have.

Yes, the timing is a bit weird (given that the last election was just a couple of months ago), but had the Harper government not decided to ignore the economy until the next budget and had it not decided to start going after the opposition parties, none of this coalition business would have ever happened.

I’m really hoping this is going ahead, though P, my resident politics geek, tells me it most likely won’t. I’m just really hoping that this will get us moving toward thinking about completely overhauling the electoral system. Proportional representation is where it’s at, baby! But this is probably just me being overly optimistic and more positive than I have been than when I still had that meningioma thing in my head. I guess the most likely outcome, if anything comes out of this coalition business at all, is a grumpy populace who won't want anything more to do with politics, political systems or anything that remotely smells of politics.

But I guess we’ll see. In the meantime, here's some more info:

http://www.progressivecoalition.ca/index.php
http://www.makeparliamentwork.ca/
http://www.smartvote2008.ca/coalition/

So Here's The Thing

2008-12-01T09:58:00.001-05:00

My father-in-law, a healthy 70 year old, in better shape than most people his age, constantly goes from one serious illness to the next - just that they are all in his head. Really. He makes them up, and he sure doesn't have Alzheimer's or any such thing, since P and all his siblings say he's always been doing this. Apparently it's a ploy for sympathy and attention.

So, over the years, we've had him almost succumb (yeah right!) to flesh-eating disease.... one xmas he was sure to die, "any minute now!!!" from a heart attack and spent the holidays sulking in his Lazy Boy, too 'sick' to even participate in the annual Krokinole Tournament. He's also had this mystery pain in his arm and hand for quite some time, so bad that he couldn't do any work with it at all, even eating was hard. Oddly enough, playing guitar in his band was just fine..... And he's had more 'illnesses' like these, too many to remember. He pretty much goes from one to the next with barely any time to breathe inbetween. It never ends.

And then this summer, just days before I got diagnosed with that darn brain tumour, he started telling everyone that he had a brain tumour. Yup, that's right, a brain tumour. Another self-diagnosed 'illness'. It seems to have been cured miraculously though, since we haven't heard anything about this particular issue since we told him about mine. A real one, after all.

So, the bets are now on for what sort of mystery ailment he's going to have this xmas. I'm going with organ failure of some sort, 'cause he 'hasn't had' that yet. I know it's sick, but if we don't joke about it, it just becomes completely unbearable.

Three Months, And It's A Different World

2008-11-26T11:31:00.007-05:00

I know this meningioma story is way out of whack in terms of the time line, but I wasn't writing about much of anything after Owen's birth and am still catching up.

So here I am, three months after my surgery, and feeling very much like my old self again, just better than I have in years. I still haven't slept through the night (and have found out that sleep issues are common after brain surgery), but I'm coping with it. I'm even doing my annual stint as a single mom this week while P is away at a conference - and it's working out just fine. A month ago I was freaked out about having to be alone with the kids for that long and dealing with the usual chaos in the morning and around dinner time, but now it's entirely normal. It feels so good to be able to look after my little bunnies all by myself! And the fact that it is even possible for me to do it, let alone enjoy it, makes me happier than I've been in a long time before I was diagnosed.

I can now honestly say that I wasn't myself while I had that bugger tumour inside my head.

Now, I'm great. I've got tons of energy and I'm happy. I don't seem to have any deficits, though sometimes I wonder about my memory. I think that's only because I'm a bit paranoid, though, but I guess I'll get a better idea over time. Of course, I don't have a sense of smell anymore and I miss it, I have blind spots in both eyes, but I can see better than when I first got glasses. My scalp is still numb - but apparently that's also normal. It's still weird, but I'm hoping the nerves will re-connect and everything will go back to what it used to be. As I've learned from those who've been there, it takes time.

Today is my 6th day at work, and I must say that, oddly enough, I now love my job. I assume that must be because sub-consciously I'm so happy to be alive that just about anything makes me happy - or could it be that maybe this actually is the real me? Maybe it's been the meningioma that's been making me grumpy? Who knows. I guess time will tell. I'm still learning as much as I can about meningiomas, but I know enough already to understand that these things have the weirdest symptoms. And given that mine was stuck to the frontal lobes, the area of the brain the deals with personality, it might not be all that surprising to experience a bit of change there.

But yeah, I love my job. And I've never loved it in the past, haven't even liked it all that much 'cause it was quite different from the ad to which I responded, I've had 7 managers in my 5 years there, amongst them the worst one I've ever had, and I've also been re-organized twice. But these days I'm downright giddy when it's time to go to work. It's a bit frightening, really, and it makes me feel like a freak.... But at least it's not at all that I don't love my family or that I don't want to spend time with them - it's just that these days I also love going to work. It's almost embarassing to say that, really :) I'll enjoy it while it lasts, but I'm expecting it to go back to normal any day now....

Otherwise, I know that I've been incredibly lucky. I guess I'll get the official verdict on December 8th, when I finally get to see my neurosurgeon who will also give me my latest MRI results. I'm still going with what he told my husband after the operation - that they got the bugger out entirely and that it was benign. So hopefully everything will really be normal from now on in.

I have learned enough about meningiomas by now to know that they can recur, to know that some people have multiple tumours at the same time, that some are on anti-seizure medication for a very long time and that some have huge problems after' cause their brains had suffered permanent damage by the time their meningiomas were found or because damage was caused during surgery. I know I'm lucky. And I'm not thinking about bad things happening to me again, 'cause what's the point of that? If I get another one, at least I know that it's not a death sentence. I've been through it once, so I could do it again.

For now, I'm celebrating that I've got my brain back to myself and that I'm feeling better than I have in years.

It’s A Bit Early For This

2008-11-20T14:08:00.001-05:00

We had our first snow storm of the season, and it’s not even winter yet. Yikes. And the weather guy from Environment Canada said that we can expect these kinds of storms every 3 – 4 days for the next little bit. Just grand.

I love snow, really, I do.

But putting snow pants, mittens, hats and puffy winter coats on little kids is not all that much fun. Especially not in the morning when everyone has to get out the door quickly to get to daycare or work.

Driving to work is not that much fun, either. Not with all these people on the roads who don’t get their winter tires on in time (or at all). All these freaks slipping and sliding all over the place, it’s just ridiculous, really. And it’s dangerous for everyone else, too. But I guess if they don’t value their own lives enough to do the right thing, they are not going to worry about anyone else’s either. Or maybe it’s just arrogance? Hey-I-can-drive-and-no-black-ice-is-going-to-get-in-my-way-kind-of-thing.

Whatever it is, it just bugs me.

Back To Work It Is

2008-11-17T16:10:00.004-05:00

Tommorrow.

Not sure what to think of it. I have only worked for 2 months this year (heh, lucky me, I guess) - I was on mat leave until the end of June and then on sick leave with the meningioma mess starting at the end of August. I'm sure my employer hates me right about now, given that they've been topping up my mat leave benefits only to then have to pay me, a little less than normal but pay me nonetheless, when I went on sick leave 12 weeks ago.

Oh well, it's not like I planned this or antything....

So. I guess I'm a bit nervous about going back. I had so little time from diagnosis to surgery and didn't feel I could deal with telling everyone. So I only told a couple of people. They've been spreading the news to some other co-workers with whom I'm tight, but of course, my boss informed my team. And since one of my team members is the worst gossip there is, I'm sure absolutely everyone knows by now.

And I don't even mind people knowing, it's just that I'm a bit worried about how people will treat me. I hope they get that I'm okay, and won't be on their tippy toes around me.

I guess we'll see :)

But hey, at least I'm able to go back to work, that's not a bad thing. And there sure where times when I thought that was never going to happen. I was still under the influence of my medication back then, but still. I've come a long way.

How Could I Have Known?

2008-11-14T21:07:00.005-05:00

Constantly being stressed out.
"You don't know how to have fun anymore."
Feeling blah all the time.
Feeling sad a lot.
Not having any energy for anything, barely making it through work, dinner and bedtime with the kids, crashing on the couch immediately after they are in bed.
"How come you never smile anymore?"

This all started after I've had Sophie and, of course, we thought it was all stress-related. Stress from having a new baby, stress from going back to work, stress from working full-time, stress from motherhood, stress from keeping the family going, stress from an impossible work situation with a weirdo co-worker and an incompetent boss. More stress from a second pregnancy and a new baby just when the first one hit toddlerhood.

And naturally, the possibility that you might be seriously ill is not exactly the first thing on your mind when you're not feeling so hot, or when things change so gradually that you don't even really notice, or when you have two little kids who keep you on your toes.

And it really is too easy to blame everything on stress.

Anyway. None of the above was reason for me to see my family doctor. Nothing was wrong with me physically and I'd whole-heartedly bought into the it-must-be-stress line of reasoning. It was only after Owen's birth that I sometimes wondered why I was so sad all the time. Must be pregnancy hormones, I thought - 'cause I knew I didn't have post-partum depression. I wasn't depressed and I never felt I wanted to hurt myself or the baby. I was just sad a lot, and not about anything in particular, but just in general.

I also had huge headaches after Owen was born, but I didn't get them all the time and they passed after a couple of months. I thought they were due to the stress of having a newborn in the house, not sleeping enough and dealing with a temper-tantrum-prone two year old. Around the same time, my eyes were slowly getting worse. This also seemed entirely normal to me, since I hadn't needed new glasses for the past 6 years or so. Besides, I knew that vision can be affected by pregnancy, so I didn't worry about it.

I just made an appointment with my optometrist before going back to work at the end of June to finally get new glasses.

And that's when it all fell apart.

My vision had actually improved, yet I couldn't really see. And I started getting headaches, just that they were not the really bad ones I had right after Owen was born. Instead, they were there all the time and I became quite sensitive to noise. Things were going downhill pretty quickly at this point and I could tell that my eyes were getting worse every day. I couldn't make out the giant "E" on top of the vision chart anymore, I couldn't read the newspaper or my email, and I couldn't recognize people in the hallways at work anymore. And my headaches were bothering me to the point of being in bed in a dark and quiet room whenever I wasn't working.

This was only happening this past summer just as I was being referred from my optometrist to an opthalmologist to a neurologist to an MRI, and I was pretty clueless the whole time. All I wanted was to know what was going on and get it, whatever 'it' was, fixed. It never dawned on me that it could be something serious, until my neurolgist called me at work, the day after the MRI. And then, all of a sudden, there it was: diagnosis meningioma brain tumour.

Making Progress?

2008-11-12T09:01:00.007-05:00

My lovely mother-in-law (ahem) has, for the first time ever, asked us what the kids would like for xmas! Oh yay!

That means that this year, there won't be any pink prince and princess castles and long skirts that Sophie hates and frightful dolls that make animal noises under the tree. It means that Owie is getting a garbage truck (and boy does he like garbage trucks!!) and a school bus, and that Sophie is getting the digital camera she's been asking for.

Woo hoo! Let's hope that this is the beginning of a long-term trend and not just a one-off. Now that Sophie is getting older, it's harder to get rid off any crappy toys that she gets... And maybe I shouldn't say crappy. It's more that they are the kinds of things we don't really want for our kids (yes, we do have some sort of standard....). And we're not completely mean about it, so we end up keeping a fair amount of stuff we'd rather not - but we're quite happy to give Oma a few suggestions to make sure the kids end up with good toys. And it's not entirely Oma's fault either - out there in the boonies where she lives, there really isn't too much choice in terms of quality toy stores. But anyway. I'm quite excited for the kids this time around and don't just dread what's coming when we have our big family xmas there.

But in case there are any strange toys after all, we've recently managed to get Sophie into donating her stuff away to a local women's shelter. So far, we've only done clothes both kids had outgrown, but right after we came home from the shelter, she asked if we could also donate some toys she no longer needs and most of the stuffed animals we've accumulated. And she even helped me pack them up, so I'm sure we'll be able to deal with whatever comes their way. Heh :)

We've got stuff ready to go to the shelter, and she's already excited about our next trip there. She talks about giving her things to people who need them (her and Owen's clothes), but also about the toys that the kids in the shelter can play with and that they might like. I'm sure she doesn't quite understand what we're doing, but she does know that the women and kids at the shelter can't live at their own homes right now. She's only three, so we didn't really want to give her all the sad reasons why there are women's shelters, but it's a start.

MRI

2008-11-06T09:10:00.002-05:00

I finally had my MRI yesterday morning, so the surgeon can verify he really got the whole darn tumour out. I was happy to have it, or so I thought, since I want to see the pictures myself, so I know everything really is okay.

Well.

As soon as we got to the hospital, I started feeling antsy. Not worried about possible bad results, just generally antsy and weird to be back there. I still wasn't too worried about going into the MRI machine - after all, I've had two MRIs in August and made it through without any problem.

This time was different, though.

As soon as they moved the bed into the machine, I started to panic. I had a very strong urge to get up - which of course, is the one thing you can't do while in there. I wasn't worried about the machine closing in on me or anything, I just had to get out. I pretty nearly lost it completely in there a couple of times, but managed to hang on - if only because I figured I'd have to go back in later so they could get the pictures they needed. And I was quite sure that I'd not be able to get back in, unless they drugged me up.

So the whole thing was just horrible yesterday. And it's added fodder to my suspicion that I still have some left-over steroid in my system. I was on steroids after the surgery to help reduce the swelling in the brain, and they came with nasty side effects. Like panic attacks. And even though I've been off them for almost 2 months, every once in a while something weird happens. Like the kinds of things that happened while I was still hopped up on the stuff. It's just that now it's much milder and I'm pretty much back to normal, so I can recognize it for what it is and no longer think it's reality.

And while I was in the MRI machine, I felt like I was back on steroids, just that the panic wasn't nearly as strong as it had been when I was still taking the drug. I also 'felt' some liquid running out of my head (of course, there was none) - which also happened to me quite frequently while I was still taking the steroids.

I have no idea if the steriods still are in my system, of course, it's just that sometimes I don't react to things as I normally would, or I have the kinds of dreams/hallucinations that I had while 'under the influence'. It's not fun under normal cicumstances, but yesterday it was just the worst. And it makes me angry. 'Cause I'm feeling really good, better than I have in a long time, actually, and so I just want the whole thing to be over.

And I guess I'm still very surprised that I had such a strong reaction to the MRI yesterday and that it took me hours to get over it. I was just completely shaken up - and that's not entriely normal for me, what with 'taking things in stride' and all. I'm pretty sure that had I been nervous in a normal way, I'd have gotten over the whole thing just as soon as I'd gotten out of the machine. Instead I felt unnerved and crappy for hours after. And this, too, makes me think there must still be some steroids floating aroung in me.

Anyway. I survived the MRI and hopefully my surgeon's secretary will finally set up my appointment so I can get the final verdict from him. I know that just because I think I'm fine doesn't necessarily mean I'm really fine, but I don't really expect anything bad. After all, my surgeon did talk to P right after the operation and told him that the tumour had been benign and that they'd managed to get the whole thing out. So there really shouldn't be a problem.

And for now I'm hoping I won't ever have to have an MRI again. Or at least not any time soon.

Last Night After Dinner

2008-11-03T13:33:00.003-05:00

"Owie, wo ist Deine Nase?" (Owie, where's your nose?)
"Bababa. BA!"
"Deine Augen, Owie! Wo sind Deine Augen?" (Your eyes, Owie! Where are your eyes?)
"Baaaaaaaaaaaaa!!"
"Mama, what is this in German?" (touching Owen's hair and me translating)
"Owie! Was ist das?? Deine Haare!!" (Owie? What's this?? Your hair!!)
"Baba. BAAA!"

This was Sophie, trying to teach Owen German! And it sort of was her idea!

During dinner, she asked P "Wie geht's Dir?" (How are you?), without any prodding from me. Though I admit that I shamelessly exploited this opportunity by talking to her about helping Owie learn German once P had answered and we'd asked each other a few times how we were (still all in German). She loves to help with just about anything and is quite convinced that the only reason Owen is walking is because she taught him. Same with speaking - apparently she's taught him the handful of words he has.

And it worked like a charm. She's been so adamant that she can't possibly speak German for so long now that I'd almost given up hope that she'd actually start speaking it on her own. And now she does. She's still a long way from any sort of fluency and uses words and phrases more than complete sentences, but at least she's trying!

And Owie had a new German word last night, too - he said "Hallo" (Hi) to Sophie's brand new toy Sandmann. She had it propped up on her chair and showed it to Owen, introducing the puppet to him. And he beamed at it and shyly said "Hallo."

Things are going well!

Hooray!

2008-10-27T14:03:00.003-04:00

I am indeed getting my driver's license back!

My neurologist had to have it pulled back in August when he noticed I could barely see. Neither he nor the neurosurgeon could tell me what would happen with my vision as a result of the surgery - but it became pretty clear to me early on after the operation that my eyes were much better than they've been since I first got glasses when I was 18.

I still find that really weird. I had a brain operation, not eye surgery, yet here I am, seeing clearly again. Not that I'm some medical expert or anything, but it seems to me that the tumour might have been there since I first needed glasses (even though I find that very hard to believe), just that until recently it was small enough to not cause major damage. I'll ask my neurosurgeon about it when I finally do have my follow-up appointment, though he was quite clear at my initial assessment that it's not really possible to tell how long the tumour's been there.

My eyes are now good enough to legally drive without glasses, and I did pass the vision test ordered by the Ministry to assess whether or not I would be allowed to drive again. However, my vision is not perfect and my optometrist recommended I do fill my new prescription. I also have blind spots in both eyes, and it's impossible to tell whether they are permanent damage caused by the tumour. If I'm lucky, my optical nerves are still healing and the blind spots will go away, but apparently the only way to tell is by repeating the 'vision field test' I had to do for the Ministry at some later date. I'm not sure whether I'll do that, but maybe the next time I'm getting my eyes checked I'll talk to my optometrist about it again. She seemed to think that I should expect some permanent damage the last time I talked to her, but I might just do it out of curiosity :)

I wish I had no blind spots, of course, but for now I'm just so glad I'm allowed to drive again!!!

Two Months Later

2008-10-26T14:07:00.009-04:00

Two months ago today I was having a 10 hour operation to get rid off my damn brain tumour. I missed most of that day, of course, but I sure felt crappy after the operation. I had a giant pressure bandage on my head, some pain, some brain problems, I was weak and freaked out, my eyes were swollen shut - but most of all I suffered from the nasty side effects of the steroid wonder drug I was given to help with the swelling of the brain.

Panick attacks, hallucinations, extreme mood swings and sleeplessness. Life was not good, especially since early on we didn't know that these were 'only' side effects from the meds, temporary, as opposed to permanent issues stemming from actual brain damage. No one in the hospital informed us about this (even though I was already having all of the effects there), so the first few weeks at home were scary and frustrating and chaotic. Definitely the worst time in my life, and hopefully nothing else will ever come close to it again.

But today everything is good. I'm alive and I'm feeling much better than I have in a long time. I'm happy, I'm stronger, I'm moving on. I'm nowhere near over what happened to me and to us as a family, not yet anyway, but I feel like myself again. I feel normal, even though I'm much more tired than I've ever been in my life (haven't slept through the night since the operation) and I know I'm not quite a hundred percent yet.

But life is great. And today is the first day since the operation that I'm all alone with my kidlets for the full day since P. had to go to work. And not only am I strong enough to handle it, even with a temper-tantrum throwing 3 year old, I'm actually having fun with them.

Even only 5 weeks ago, I'd have never thought this would be possible. Yay for me!

Meningi... What????

2008-10-23T09:16:00.016-04:00

So yeah. I had a brain tumour.

Who knew that huge headaches in the first bit after pregnancy could be an early warning sign, and that they are not just a sign of stress, lack of sleep or hormonal upheaval? And who knew that this is what you find out almost a year later when the headaches have long disappeared and you finally go get your eyes checked 'cause you think you need new glasses?

Not me, that's for sure. But that's how it started.

I noticed after I had Owie that my eyes were getting worse. No big deal I thought, after all, I haven't had new glasses in a long, long time. Being an expert at putting things off, I didn't actually go to see my optometrist until late June, just before I had to return to work from mat leave. At that point, my eyes had gotten really, really bad. So bad that I could barely read my email. The good doctor wasn't so happy with what she saw, and thought I might have glaucoma or, much more rare, pressure around the optical nerves. So she sent me off to an opthalmologist, a most rude and arrogant little man who told me that "You have a problem! And I'm going to fix it!!"

Heh.

He did eventually tell me his diagnosis, and it turned out to be papilledema, or pressure on the optical nerves. This, apparently, is not really an eye disease, it's just a symptom of something else. By the time I saw him my eyes were pretty bad and getting worse every day. So bad so that I couldn't read my email and started to not recognize people in the hallways at work. I also had pretty bad headaches again and was very sensitive to noise. Not such a good thing when you have a one-year old and an active toddler around.... Anyway, Dr. Arrogant sent me on to a very nice neurologist and gave me some pills that made my headaches so much worse that I had to throw up at work. Twice. That was not so good.

Thankfully I got to see the neurologist, a supernice guy who looked like a mad scientist and came equipped with a cute little wooden box that held his tools, pretty quickly. That kind of freaked me out, given that all you ever hear about are that wait times for specialists are long, very long. At that point I hadn't clued in yet that I could actually have something really serious, but I was quite happy to go see him 'cause I figured he'd know what was wrong with me and he'd be able to fix me up.

He did some tests, and told me at the end of the appointment that he was pretty much in the dark on me. He thought the opthalmologist was out to lunch on the papilledema diagnosis (well, he was a lot more diplomatic than that), since my vision problems were different from those with papilledema and I didn't quite fit the profile of those likely to get it. Though I definitely had a huge amount of pressure in my head and around the optical nerves. He consulted a colleague at some hospital to see if whatever testing this person was doing was appropriate for me, but it wasn't. So in the end he sent me off to have an MRI to get a better idea of what was going on in my head. He, of course, had also noticed that my eyes were so bad that I wasn't save to drive anymore and informed me that he had to have my license pulled. I wasn't even upset about that one, since I knew I shouldn't be driving around anymore. (Now I am, of course, but hopefully I'll get my license back soon since my eyes are much better again.)

He was very nice and very calm about everything, so I still didn't get too freaked out. And I was still happy to have the MRI done since all I wanted was to know what was going on and to have it fixed. I got this appointment really quickly, too, and again this did freak me out a bit, also because of all the talk about long wait times for such tests.

But really, silly me. I still was not thinking that there could be a serious problem.

It was only when I got a call, while I was at work in our terrible open concept office, from the friendly Neurologist the very next day after the MRI that it finally hit me, hard. And that was before he even told me I had a brain tumour. The man was on vacation at the time, but was on top of things and called me since it was kind of urgent to have the thing removed. He was obviously used to giving people these sorts of news and very calmly told me that I had a brain tumour, but that I shouldn't get too worried about it since the kind I had was usually benign.

A BRAIN TUMOUR!!!! ME?????
I thought I was going to keel over dead just from the shock of it.

He continued to tell me that Meningiomas (my kind of tumour) are not actually inside the brain, but that they grow on the outside of the tissue that covers the brain. They grow slowly, but are normally smooth and fairly easy to remove. It was obvious on the MRI that mine had grown to be quite huge (slightly bigger than a golfball) and was not smooth, so he wasn't sure how snuggly it was attached to the brain. But all in all, he seemed to be quite positive and even told me that it probably wasn't as bad as it sounded. He had also already made an appointment for me with one of the best neurosurgeons around, and that was for the following day! Another quick appointment, so quick that it didn't even leave time to get really freaked out. I was stunned, of course, but eerily calm.

I phoned P., who was at home on parental leave, to give him the news (he already knew the neurologist was looking to speak to me since he'd tried our home phone number first). He, of course, was as stunned as I was and we both didn't quite know what to say or do. All I could think of were practical things - like to make arrangements for Owen with Sophie's brand-new home daycare provider to take Owie for the duration of the appointment since he doesn't do well at doctor's appointments, that kind of thing. The rest of the day and then the night somehow went by and in the morning we went to see the neurosurgeon.

First, we saw a very nice Fellow who actually had bedside manners, and patiently answered questions. He also showed us the MRI images and it was quite obvious to someone as untrained in medicine as we are that there was a huge thing in my head that couldn't possibly belong. It was shocking to see, but we were still so completely stunned that there wasn't much of an emotional response. After the Fellow was done, he reported back to the big guy, apparently an internationally renowned neurosurgeon, and then they both came back in to continue with my assessment.

And it got increasingly more bizarre. The big guy was really more interested in teaching his Fellow and behaved as though we weren't even there. He almost crawled into my eyes and kept mumbling to himself... "Interesting, this is so interesting!!!?" and (to the nice Fellow) "Francesco, did you see she's got a Kennedy-Foster???" The whole thing was quite surreal, just that Francesco the nice Fellow kept smiling at us apologetically.

Once more we discussed my symptoms and their timeline, and both of them became quite excited. The friendly neurolgist had already warned me the day before that this was going to happen... It seems that they already know that meningiomas can grow faster during pregnancy, but since all my symptoms occurred after pregnancy but while I was nursing, they were going to have the tumour tested for prolactin receptors, a hormone one has while nursing. Apparently, it is not yet known whether meningiomas can also grow faster during nursing. Someone was looking for their next research paper, I think :) And of course, they were also excited because it was a fairly large tumour, something they don't often see with meningiomas since they grow very slowly.

We found out that I had to be operated on as soon as possible and they put me on the waiting list immediately. They also told us that even though most of these meningiomas are benign, they were really only going to be able to confirm that once they got their hands on it and had a chance to have it tested. The operation was to last 6 hours and I was going to be off work for 6 -8 weeks. It also turned out that my very own meningioma was not smooth at all, but seemed to be quite sticky and full of 'nubbins' (their term, not mine). This was going to make the operation a bit more difficult, but they were fairly certain that none of these 'nubbins' had yet invaded the actual brain. So far so good, we thought.

From looking a the MRI scans, the neurosurgeons knew that the tumour was located in the middle of my head, stuck to the frontal lobes, quite likely around the pituitary gland, close to the optical nerves, and that it had already destroyed my sense of smell. They also knew that my brain was very badly swollen, but could not tell us how much, if any, brain damage had already occurred and how much they might be causing during the operation. If there was damage, they didn't know if any of it was going to be permanent or if the brain would be able to heal itself. Neither could they say how long I've had the tumour, but they assumed it must have been in there for a while (just because it was so big). They told us there's a risk of stroke during the operation, and then pretty much sent us home, telling us that I'd probably have the operation within the next 2 - 3 weeks.

We felt like we'd been hit by a truck, a very big truck, and just continued to be stunned. So stunned, that we couldn't deal with it emotionally - everything was still very much oriented toward practical matters. Like what are we doing with the kids during that time? If I wasn't able to look after myself for the first bit after the operation, who could help us out? Could P. get more time off work if he needed to? And how the hell do we tell people?

But there it was. Mystery solved. Not at all what I had expected - not that I really had expected anything in particular, but it just never dawned on me that I really could have something life-threatening.

Maybe She Can, After All?

2008-10-20T15:56:00.003-04:00

Sophers speaks German these days. Hooray!!!!

Not in complete sentences or anything, but she uses words and phrases when I read German books to her and when I do stuff with her while P. and Owen are sort of around, but are not all that involved. It still surprises me every time she says something in German and I'm still not sure that she's going to keep it up, but she's been doing it for the last few days, so I've got my hopes up!

We have two German books that have text interrupted by pictures of something that is part of the story. For example, it might say something like "At 8:00, Mama drops Max off at daycare." - and there is a picture of kids playing rather than the word 'daycare'. Sophie, all of a sudden, has decided that she can say all the words that are shown by those pictures. I may be more excited about this than I should be, but it's been such an uphill battle with her not wanting to speak any German at all. Stubborn little monkey that she is :)

We've also been into crafts this past weekend, making pictures for Omas and Opa, aunties, uncles and various cousins with gorgeous fall leaves that we collected on Saturday. The boys were watching sports - with P. very happy on his fave arm chair and Owie, being sick and all, hanging out on his lap - and we were busy making dogs, cats and ballerinas out of leaves and twigs. As usual, I was speaking German with Sophie and she actually repeated things I'd said in German, sometimes to herself, sometimes to clarify with me, and once or twice even to Owen when he made one of his little visits over to us to see what we were doing. It was so great!

There also is this German rhyme game about riding on and falling off a horse whereby the grown up bounces the kid on their knees and eventually lets them fall off (while holding them, of course). Both Sophie and Owie love this game, but Sophie has never ever sung it with me - until this past weekend. She got all into it, especially so when I asked her to now teach it to P. It is pretty clear that she doesn't get all the words right and that she has some sort of accent (not sure that's what it is, it's just that her pronounciation is a bit off), but still. It does help me stay motivated to keep up speaking German with her and Owen.

Over the past three years, I've gone from assuming she'd-simply-pick-up-the-language to I-guess-it's-okay-if-she-understands - and now I'm a bit more hopeful than I've been lately that she actually will speak it one day. So hooray again!

And Here's Owie Kapowie!

2008-10-15T08:55:00.004-04:00

Owie Kapowie was born July 4th, 2007. To my and P.'s great shock, we didn't fall in love with him as instantaneoulsy as we did with Sophie. We loved him, of course, but we were just not in love with him, if that makes sense. I felt like a horrible mother, but I had heard that bonding didn't necessarily happen within the first few seconds of the new baby's life, and so it was with him and us. In the end it all came together, rather quickly even, and now I can't even believe that there was a time, even if it was short, when we didn't think he was the cutest thing ever :)

And he was a very cute baby, and a very well behaved one at that. We had always thought that Sophie was a good baby - but Owie beat her, pants down. He actually slept in the daytime, for hours on end. Sometimes I even had the urge to wake him up, just so I could cuddle with him. I never did, but I guess I found it so hard to have him sleep constantly because I was so used to Sophie never sleeping in the daytime and always wanting to interact. She always wanted to look around and see different parts of the house, else she'd get bored and have a fit. Owie, on the other hand, was calm as calm can be. He was quite happy to look out of his swing or be held when he actually was awake, and he didn't need us to entertain him. It was nice, but ever so different from his big sister.

Owen also said "Mama" when he was only two months old! I didn't quite believe my ears, 'cause he was still so little, but he really did say it. My mom was visiting at the time, and she heard him say it, too. Of course, my heart just melted. He also started being ticklish aroung the same time and was able to laugh his little head off.

Slowly, he also began to be more awake. And he turned out to be a friendly little guy, though a bit on the shy side. He liked people right from the start, but only when he was safely in my or P.'s arms. He was very charming - cocking his head to the side and smiling at them shyly before hiding his head in whatever shoulder he was closest to. Trips to the grocery store took forever, 'cause everyone had to come up and admire him. It's nice, in a way, but I've just never been all that comfortable with it. Anyway, now he's a tot, and even though he's still cute, he's past the age where everyone has to come up to our shopping cart and try to get him to smile at them or even worse, touch him.

He also decided that his big sister Sophs was (and is) the best person in the whole wide world. Early on, his biggest smiles and the funnest giggles were reserved for her and only her. Owie's eyes lit up and he smiled when she entered the room, and he giggled and laughed when she danced for him or made a funny face. P. and I were no competition on this one, and still aren't. He's very happy when we play with him or make him laugh, but he still really likes her. And luckily enough, it goes both ways - they both obviouly love each other and constantly hug and kiss. He goes over to her and hugs her when she has yet another tantrum, and she always looks out for him and tries to make sure he's okay.

Early on though, Sophie had to learn to love him. When he was first born, she was scared to go near him or even touch him, but once she was over that, things started improving. She constantly wanted to be with him, hug him and kiss him, help change his diaper and get him dressed, etc. Of course, being barely two at the time, didn't help. We often had to restrain her enthusiasm to make sure he didn't get hurt. I think he was just a most amazing thing for her and she was completely mesmerized by him. It was only once he wasn't so new anymore and she noticed that he couldn't do much more than look at her, that things changed a bit. As she told me several times back then, "Owie boring!!!", and she was quite keen on returning him to the hospital. We drove by the it fequently, and she often would ask if we could give him back now :) And every once in a while she did hurt him - once she bit him so badly that he had tooth marks on him for days, and then there was the time she purposely bonked into his head so badly he got a nose bleed.....

Good thing that she got over that once he got a bit older and started being more aware of what was going on, sitting up and crawling. And now that he's walking and beginning to talk, she often can't get enough of him. She is still quite enthusiastic about him and often smothers him in her own special kind of love. It doesn't matter that he complains loudly about it, it just seems to encourage her. We've had to rescue him a few times from her hugs (strangleholds, really). But we're enjoying them getting along, as there sure will be a time when this will come to an end.... And she doesn't really hurt him anymore, if anything, now he's the one pulling her hair and biting her.

Owen is 15 months old now, still a happy and friendly little guy, still a bit on the shy side and definitely still charming. He loves reading books, throwing stuff across the room (regardless of what it is), wearing and adjusting his baseball cap, cuddling, and going outside. He eats just about anything and walks the half block to daycare, holding my hand. He waves bye-bye very enthusiastically, helps closing doors and getting dressed, and he just loves being tickled and being held upside down.

He's much wilder than Sophie was at his age and is a bit more accident-prone. Nothing much has happened to him, but he's had the occasional bloody lip. He also tries to climb over the gates we had to put up to keep him out of trouble. But this shouldn't be surprising, given that he managed to propel himself out of his bucket car seat before he was even six months old. And similarly with grocery carts - even strapped in, he tried very hard and almost successfully, to climb out. Now he's over trying to get out of the cart, but he still likes trying to pull stuff of the shelves and dropping them on the floor. Particularly nice when he manages to do that with a jar full of olives.... ahem. Sophie never did any of this and we sure never did any child-proofing for her :)

But he's a good one, both of our kids are, and sometimes I can't believe how lucky we are to have two happy and healthy children!

The State of the Kids' German

2008-10-09T12:44:00.004-04:00

I'm still not too sure on how I'm doing in helping my kids become bilingual. Fluently bilingual, at that :)

Sophie is now 3 years and almost 5 months old and rarely ever speaks German. Owen is almost 16 months old and is just beginning to speak - he's got two German words (yes and no), though he hasn't used them in a couple of weeks, and is busy picking up new English words. Both of them are used to me speaking German to them, but of course, they hear English everywhere else (except when we go to Germany, or have German-speaking friends and family visit, which is not often). When I just started out as a mom, I assumed my kids would learn German very naturally, in that they'd just pick it up 'cause I'd speak it to them almost exclusively. Now I think I've been pretty naive on that, and it doesn't seem to be working that way at all.

As for Sophs, she understands German very well, but continues to respond in English (not just to me, but to anyone else who speaks German to her as well). Our conversations are constantly like this:

Me: "Zieh Dir mal bitte Deine Schuhe an." (Please put on your shoes.)

Sophie: "Okay, Mama! Can I wear my Crocs?"

Me: "Nein, für Deine Crocs ist es zu kalt. Zieh Dir mal lieber Deine braunen Schuhe an." (No, it's too cold for your Crocs. Just put on your brown shoes instead.)

Sophie: "But Mama!! I don't like my brown shoes!!!!! I want to wear my Crocs!!!!"

Me: "Nein Schnuffi. Es ist zu kalt für Deine Crocs. Und Deine braunen Schuhe magst Du wohl, die hast Du doch selbst ausgesucht. Los, zieh die jetzt mal an, der Owie wird schon ganz ungeduldig!" (No Schnuffi. It's too cold for your Crocs. And you do like your brown shoes, you even picked them out yourself. Come on, put them on, Owie is getting impatient.)

And so on. All the time. Unless we're with English speaking friends or family.

The odd time, she uses a German word, but only when it's new to her and she cannot immediately think of the English translation, or doesn't yet know the word in English. This happened when we were out the other day and she asked me how far ahead she could run as I slowly followed with Owie Kapowie on my hand. The first time I told her that she could run to the hedge (Hecke in German) a bit down the block, she asked me, "The Hecke? What is the Hecke??" Now she knows and just runs to it when I let her.

There are only two times when she actually speaks German - it's part of our night time routine, and also when she wants to do a German rhyming game.

At night, I'm always the last one to say good night to her. We lie down together in her bed for a couple of minutes to snuggle and to talk, and then she asks me to sing "the Schlaflied" to her, a German bed time song she likes. She usually sings bits and pieces of it alongside with me, always making me very happy :) She also says "Gute Nacht, Mama! Schlaf gut! Bis morgen!" (Good night, Mama! Sleep tight! See you tomorrow!), not always in this order, but some version thereof.

And she knows the rhyming game by heart (though she does make mistakes) and says the rhyme when we play that game. She also knows how to count to 10 and has a few numbers beyond 10, just not in the right order. She also knows the alphabet in German - the thing is, she rarely ever uses either one. I'm always surprised that she still remembers when she actually does count or sings the alphabet song in German.

We are planning on sending her to German school on Saturday mornings next fall, alongside with the regular English or (hopefully) French immersion JK she'll start then. The German school offers programmes starting with JK and goes all the way up to grade 12 or so. I haven't really looked in to it at all yet, but a German friend knows someone who's got her kids in it and apparently it works out nicely. Their situation is similar to ours' - the woman is a native German speaker, while the husband is a native English speaker. The difference is that the husband speaks a bit more German than mine does, 'cause he's lived and worked in Germany for a year or so once. Their youngest daughter is similar to Sophie in that she understands German but won't speak it. Since she started German JK on Saturdays, she's started to speak German - not necessarily at home, but at least when she's in German school. And apparently she's imroved her spoken German quite a bit - so, of course, I have my hopes up for Sophers! Plus, the kids learn to write in German, something I also find quite important.

We also went to Germany last spring, and talked to Sophs about speaking German there before we ever left here. She did not like that idea at all, and claimed that she didn't speak any German. In her mind only I know how to speak it. I'm not sure how she came up with that, and explained to her, many times, that she does speak German 'cause I speak it to her, but she wasn't convinced. She kept asking, and sometimes still does now, "But Mama, why do you speak German to me and Owie???" I always tell her that I do 'cause I'm teaching them so they'd be able to speak it too, and she seems to like that - but it doesn't actually change anything. Oh well.

So we'll see how it goes. My hope always was that she'd pick up more German while she was home with me for a few days each week while I was on mat leave with Owie, but that didn't happen, unfortunately. But I guess I really was/am naive in thinking that my kids will just pick it up if I speak it to them :)

And Owie?

He's still only wee, and it's too early to tell how he's going to do with his German. He's definitely heard it a lot - constantly from me during my year off, also from my mom when she visited last September, and then of course, from everyone when we went to Germany in May.

He's started speaking while he was staying at his grandparents' place out in the country side when I had brain surgery, so we missed a lot (his first real steps, too!). But when I was finally healthy enough, and we could go and pick them up, he had a big surprise waiting for me. Not only a couple of English words (up and go), but also German words!

And he was most cute in the way in which they came out.... Sophie, him and a bunch of their cousins were having lunch at Oma and Opa's house still, with Owie feeding himself, taking bites from a slice of cheese in his one hand and a piece of cucumber in the other. I helped him along, meaning I made sure he didn't put the entire slice of cheese into his mouth in one piece, and asked him, "Do you want some toast?" And what does he do but shake his head 'no' and answer "Nein." at the same time!

I was speechless - and so were his cousins, who don't speak German, but have picked up enough to know that he'd just said something in German. It was so great - not only did I finally get to see my kids after a long, miserable month, but my little Moppel also spoke in both his languages! And a few days later, when we were finally home again, I took him for a walk and asked him whether he liked being outside and going for a walk. This time, he nodded his head 'yes' and very clearly said "Ja!!".

Now, he hasn't answered like that since then, but it was so great to see and hear - almost like talking to a real person, not a little tot who still doesn't know what's what :) He's been saying "Ja! Ja! Ja!" since then, but not necesssarily as a response to anything. But it's still exciting, and I can't wait to see how he's going to progress with his German. And everything else, of course.

My dream has always been that Sophs and Owie would speak to each other in German when they got older, maybe as their own (almost) secret language when out somewhere. I'm not sure that's going to happen - Sophie is quite unwilling to even consider speaking it, and Owie copies her a lot. And not always in a good way. But I guess we'll see. Maybe she'll come around, or maybe at some point he won't care what she thinks of the whole thing? I'm just going to keep up my part of the deal - speaking German to them as much as I can, reading them German books or translating English books on the fly, and having them listen to German kiddie CDs.

They both also have German pet names - Sophie is Schnuffi, and Owie is Moppel. Sophie likes it when I call her Schnuffi, but she wants us all to be Schnuffis. She's also referred to Owie as Moppel once, but it's more that I call them that and they know that it's them (and I'm not sure Owen even knows that yet).

I'm not sure where things are going with their German, but we're trying :)

Young Love!

2008-10-01T08:15:00.006-04:00

Apparently Sophers, barely 3 years and 4 months old, married her daycare friend Kale, a 5 year old boy, yesterday afternoon :) I knew she likes playing with him, but he's described by our daycare provider as a real "boy's boy". So much so, that he's only into typical boy things like playing with trucks and cars, throwing balls, etc. Yet somehow she convinced him to play dress-up with her, and somehow that led to a quick wedding. Sophs apparently donned the Barbie high heels and some sort of veil and just talked him into marrying her :)

I wish I'd have been there!

At night, I usually snuggle with her in bed for a few minutes, and we talk before I sing her favourite German bedtime song to her. And sure enough, last night the topic was "I'm married now, Mama!". "Just like Mama & Papa." I said. "No, Mama, it's just pretend.", and then she giggled and kept talking about how she likes Kale, how she likes playing with him, and how she's indeed married now. Heh. It's kind of funny what these little toddlers come up with :)

I know all about young love myself, though, given that I came home from daycare at age 4 to tell my mom that I was in love with a slightly older boy, too. Apparently she tried to explain to me that it's not love when you like a boy and he's your best friend. But of course, I was very opinionated and told her off - "It really is love, Mama! I love him, I really do!". And I did, as much as a 4 year old can, I guess :) And he 'loved' me, too - 'cause he had my picture at home in a frame on his desk and he told me that he had to turn it around when he had to do his homework. Otherwise he'd be too distracted.

Heh!

His name was Uwe and he died a few years ago. I hadn't been in touch with him for ages, of course, after all, we really were way too young back then :) But I often wondered what had happened to him. I never tried to find him or anything, but always thought it'd have been interesting to catch up. The thing is that he had a very serious heart defect from birth on, and had been given a life expectancy of around 20 years only. In the end, he made it to over 30, so good for him, but it still hit me pretty hard when I heard of his death.

But it's ok, I have a ton of good memories of him and even though it's sad, I like that Sophie reminds me of my own childhood.

I'm Back!!

2008-09-25T19:39:00.004-04:00

Well, it’s been a while since I was here last…. And so much has happened in the last year and a bit.

In short:

I had kidlet #2, a 10 pound baby boy we named Owen ‘cause that was the only name P. and I could agree on. I hated his list, he hated mine and made fun of it – according to P., all my names were going to lead to the kid being beaten up in the playground :) So, Owen it is, though we call him Owie or Owie Kapowie, at least for now while he’s little and can’t complain about it.

I didn’t have access to Blogger while on maternity leave and never felt like fiddling with the settings on our home computer so I would get access. But I thoroughly enjoyed my year off with Owie and didn’t even miss blogging! Sophs was home, too, for a couple of days a week – the other days she went to her excellent German home daycare and had a good time there with her friends.

Speaking of which, the excellent German home daycare came to an end ‘cause the excellent daycare provider quit the daycare business. That was pretty sad, especially for Sophs, but we’ve got another home daycare, on our street, with which we’re very happy. Both Sophie and Owen go there now, and both are doing well.

We also went to Germany for a vacation. Not that it was a vacation, with my mother and sister being as stressful as they are, but it was nice to go back. The kids went for the first time and everyone was excited to see them. Unfortunately, Sophs pretty much refused to speak German, though sometimes I managed to coax some words and even sentences out of her. But the stubborn little monkey had pretty much made up her mind before we went that she wasn’t able to speak any German anyway, so she mainly spoke English and expected everyone to understand her. It led to some confusion, but somehow there was always someone around who either could translate for her or at least understood enough English if things got too weird.

Of course, I had to go back to work at the end of June as my maternity leave came to an end. That was not a very happy occasion, even though I probably am not all that good at being a stay-at-home mom. As much as I love my little bunnies, I do need something else… It’s just that my job is not really what I signed on for and we’re not busy enough. So it gets boring, very boring. But anyway, it’s okay for the time being and I still have my hopes up that my department is going to get its act together one of these days. Maybe if our managers stayed around for a while we could actually start on all these projects that are constantly “in the works” – but we’ll see.

I’m currently off work, on sick leave until at least October 20th. This is the other big thing that happened while I was off – my vision became very poor, so poor that in the end, I couldn’t even see the big “E” on top of the chart at the optometrist’s office. Of course, I thought I just needed new glasses – but eventually it turned out to be much more serious than that. I actually had a tumour in my head that had grown to be huge and put pressure on the optical nerves and the brain itself. It was taken out a month ago and now I’m at home, recovering. Things seem to be going well, but I’m waiting for my doctors to assess me on October 20th.

So much on everything for now, but details will follow. I’m sure off it – ‘cause I’ve got access from home now and as of next Monday, P. is going back to work and the kidlets will be in daycare full-time, so I should have some time on my hands. Of course, I’d prefer for the kids to be home, but I am still too weak to deal with both of them on my own. Plus, even though I’m supposed to be doing normal housework and normal activities, I’m also supposed to be resting and trying to get my strength back. And resting in particular is just not possible with a three year old and a one year old around :)

But all in all, things are returning to normal. And I will be back!

Free To A Good Home

2007-06-04T14:48:00.002-04:00

Cute toddler, turned two on Saturday. Blond. Budding bilungualist. Able to feed herself, though a bit messy, especially with spaghetti and meatballs. Comes with clothing, toys, books and all sorts of useful toddler paraphernalia, like a brand-new wooden sandbox lovingly build by her parents as a birthday gift. Loves to be outdoors. Very outgoing and friendly, loves meeting new people. Potty-trained. Sings and dances, very capable of communicating with the world around her. Funny and charming, loves helping with housework, mostly sleeps through the night. No known allergies, healthy as a horse. Even eats the occasional veggie.

Any takers?

Do I hear a "YES" back there? Before you get too excited, you should know this….. the terrible twos, thus far, have mainly been enjoyable – frustrating and stressful for sure, but it’s been nice to see her trying to get things to go her way, trying new things, screaming to her heart’s content, and eventually coming around to some sort of sensible middle way. Now that she actually is two, we seemed to have turned a corner. For the worse.

Current favourite behaviours include temper tantrums (one after the other being the preferred modus operandi), intentionally peeing on the floor, loosing any and all ability to walk (especially when alone with me who can no longer lift her without yelping out in pain), shouting and screaming, doing all the things she knows full well she’s not supposed to do. Lying limply on the floor when she’s supposed to be walking somewhere. Ordering me around. Telling me “Mama bad! Mama bad!!” (and no, this is not something we ever say to her, she must have picked it up from the other little stinkers at daycare).

And this list could go on. And on and on and on. And sometimes, she does all of those things in various combinations for hours. And I guess this is the new corner in all of it – she’s been enjoying the terrible twos for months already, but she knew when enough was enough and only very occasionally ended up in a time out situation. And never for very long, since a few seconds usually were enough. Yesterday? She went into a time-out voluntarily (usually she kicks and screams on the way there and begs for mercy) and laughed at the whole thing. Yes, laughed at it.

Still want her? I didn't think so.

Good thing I've already promised P I'd keep her around until he comes back tomorrow night, but after that all bets are off. I prefer to blame this on my ever so fragile psyche, being so very knocked up and all, 'cause otherwise I'd be worried about my mental state. But the thing is, and there always is a thing, isn't there, the thing is that she's picked the worst possible time to be starting this crap.

My back/butt issues are much better, but still not totally fixed and they won't be until we get out Bug Junior. Makes it that much harder to deal with her and remain sane at the same time. And why, why really, does she have to start this when I'm doing the single mom thing for a few days? Why did P go to his damn conference which, as far as I can tell, involves more sightseeing and eating fancy dinners than actual work?

And yes, I know. I just have to suck it up. P is at the conference 'cause his boss made him go. My back/butt issues are a lot better and I no longer have to hobble too much. And yes, I know full well I can't compare myself to a real single mom. Doing it for four days in no way compares to doing it day in and out, for years or even decades.

But it still sucks. All of it.

June 25th, 2008

2007-05-30T11:15:00.002-04:00

That would be my first day back at work after mat leave and vacation! June. 25th. 2008. Whoa!

I’m so damn excited, I barely am able to sit at my desk like a normal person. But really, it took work more than two months to get this sorted out and it came right down to the wire since next week Wednesday is my first day off already.

There were several occasions when I thought my head was going to explode over this. I mean, really, how can something like this take months to sort out? It’s not even difficult. I told them right off the bat what the easiest solution would be and I’m not working for some dinky outfit that doesn’t have an HR department and does everything on the fly. Or where no one ever goes on mat leave. Oh well.

It’s not that I should be shocked by the ineptitude – this, after all, is the same place that managed to somehow forget to pay me for the first 6 weeks the last time I went on mat leave, in spite of me having filled out all the paperwork and notified everyone I was supposed to once Sophers was born.

Heh! I’m just glad it’s over.

Sweet Little Monkey

2007-05-25T14:08:00.002-04:00

The little toddler, about to turn two, has been enjoying the 'terrible twos' for a while already.

As have we.

I guess overall, it hasn’t been too terrible, but she sure has her moments. Peeing on the floor just so she could see what would happen, screaming "NOOOOOOOO" at any and all requests, refusing to walk (especially when alone with me and my still very sore back/butt area that really should not have to carry all of her 33+ pounds on top of everything else) and obviously looking for trouble wherever she goes. It’s frustrating at times, but oddly fascinating, too, and wish I could know what exactly she is thinking when she’s in the midst of a tantrum over basically nothing. A lot is written all over her face, but I’d love to hear it directly from her.

But over the last few days, little Angel Toddler has appeared. I’m not sure what to do with it, except enjoy it while it lasts. She’s full of “Yes pease Mama” and “No tank you Mama”, helpful (well, as helpful as a toddler gets) and very much agreeable to pretty much anything. Frightening in a way, but ever so cute! And it’s so nice to have a noise level in the house that doesn’t always drive me up the wall. She’s even trying to be careful around my very pregnant belly and has accepted that I really cannot carry her around these days. Instead, she looks up at me with her big eyes, offers me her hand and hopefully asks “Mama hand??”

Melts my heart every single time.

Heh

2007-05-16T13:55:00.001-04:00

After all the excitement over big babies and early c-sections, the ultrasound says Bug Junior is tiny! 42nd percentile only!

I am shocked. Absolutely and completely shocked. So is P.

And we don’t believe the ultrasound results.

But anyway, this totally changes things. The dreaded early c-section is off the table, until further notice at least, and everyone agrees that we should go for a VBAC. Yay, I guess. The thing just is that I’ve been trying so hard to come to grips with the very real possibility of a c-section that it feels almost weird to start preparing for a VBAC again. But I can deal.

The visit to the OB was a bit odd. His nose was visibly out of joint ‘cause my wonderful midwife #2 had phoned him to see what was up with this early scheduled c-section business and his “I don’t want you to ever even go into labour” comment. He clearly was not amused and asked me why I was so concerned about it when this is never what he’d said in the first place.

Whatever.

He did say it and when I called him on it, delicately, he offered a much more reasonable and consultative explanation. So all is good. I found out later from the midwife that in the last few months, they’ve been getting a bunch of complaints about him being overly dramatic and talking down to people – they’d just never called him on it until now. Anyway.

I’m pretty freaked out that Bug Junior is on the small side of normal, though, but the midwife says to get over that. It’s not a problem as long as the entire baby measures small, it’s only one if various body parts come in at various percentiles. Thing is, though, that until this ultrasound, every indication was that it was another one the size of a small elephant:

- 18 week ultrasound showed it was already a week ahead
- It’s a boy, and boys tend to be bigger
- Second kids tend to be bigger
- My weight gain and belly size are pretty much exactly what they were with Sophers, the 10 pounder (this one may not really be an indication, it just feels like one to me)

So, it’s just odd that now all of a sudden we have to completely re-think all of this and that Bug Junior is not even average size. Though I still can’t shake the feeling that this latest ultrasound is way off. But anyway, I’m relieved I no longer have to worry about the early scheduled c-section, at least not until the next ultrasound at 37 weeks. The OB wants me to have one to check out the size again, but says the difference in percentiles should not be too dramatic. If it is though, then we’ll go back to thinking about scheduling a c-section. My worry still is that large babies just cannot come out of me naturally, and I’m really not interested in repeating the experience I had with Sophie.

And then of course, the other problem is that my back/butt area continues to be all out of whack, and that everyone agrees labour will be affected by this problem. The chiropractor, who has been helping lots, is sure my sacrum and surrounding area will not go back to normal until after the baby’s out. The midwife basically says the same, but adds that for some women it’s not a big problem during labour and for others it really puts an end to it quite quickly.

So I guess we’ll see. Overall, I’m really happy and excited that for now, everything will continue as planned and that a VBAC is a real option again. Having a scheduled c-section would make things so much easier, especially in regards to having Sophers looked after. Especially since our glorious Plan A is to have my in-laws, who live 3 hours away, come to take care off her when the time comes. This involves various other people, depending on the time of day, to look after her until they finally arrive. I didn't say this was a good plan, but since we're here without family close by, this is the best we've been able to come up with. Of course, this would be much, much easier if only we had a date, given that we don’t really need the in-laws hanging around the house just waiting and you know, driving me nuts. But really, I also don’t need all the hassle that goes with a c-section. I sure don’t want all the pain, the operation itself, the risks associated with it, the lengthy recovery time, or any of it, really. So, if, in the end, it takes getting the in-laws here early, so be it.

But anyway, for now I can go back to obsessing over baby names, getting the house clean before the mother-in-law shows up, getting my back/butt sorted out, surviving the last few weeks at work and all that sort of thing.

Woooo.

Roundup

2007-05-11T13:08:00.001-04:00

The latest fence panel came down. Not because we agree the ornery old bastard is right, but because he’s very determined to drag us through court to get his way and we’re not really all that interested in that. Given that he’s supposed to be moving out and all, we figure we’ll just wait for the new buyers. They, hopefully, will be on the sane side and will want a fence. Everyone we’ve talked to about this has had the same reaction – “What? He doesn’t want a free fence???? What is wrong with this guy???” – so presumably this will work out in the end. In the meantime, we’re spending as much time out there as possible, if only to piss him off. And of course, since his argument is that it’s all shared, we’re no longer trying very hard to keep Sophie off his property. Next time I’ll take her out into the yard, I might even let her take her chalk – that should go well, given that his yard is all cement and ours is all grass. Heh.

I now have a chiropractor. And I love her. Love. Her. I’ve only been twice, but she’s already made a difference – my back/butt problems persist and it’s still painful and I still hobble rather than walk, but it feels much better than it did last week. I’m going twice a week and get really sore after each treatment, but within a couple of days, I can feel an improvement, making me think there is indeed light at the end of the tunnel. So it’s all good. Well, almost all. What’s not good is that she says my sacrum, hip bones, pelvis and joints are so out of alignment that, at this point, labour should prove to be pretty much impossible to endure and the baby would have a hard time following the twisted way around the birth canal. So there you go, another whiff of that dreaded c-section.

About that. I’m trying not to worry about it until we get the ultrasound results next Tuesday. If, against all odds, this is a normal sized baby, I’m going to trust the chiropractor to get me all fixed up before labour. If it is indeed another one the size of a small elephant, I’ll have some hard thinking to do – or just cave in and agree to a c-section. Though I’m still not too fond of this scheduling-it-two-weeks-early kind of business. But when the OB sees me hobbling around his office on Tuesday, he’ll have a field day.

Everyone at my house is sickly. Sophers has been home all week, barfing her little guts out. She finally caught the nasty gastro-intestinal flu bug that’s been making the rounds in her daycare…. Of course, she was fine all weekend long, but it started Monday morning at 4:30. All week long, she just looked pathetic and sad and helpless, resting on the couch without moving or even speaking, totally zapped of all energy. She’s beginning to get better now, but we’ve still kept her home for the day since she probably still can’t keep up with all the other kids all day long at daycare. P has puked once a couple of days ago, but has been feeling fine. And me, I spent my morning hanging over the toilet, barfing my guts out in amounts previously unimaginable. It was not pretty. And then I went to work…. Not because I felt better, but because I had a couple of sick days this week to stay home with Sophers and I will need another one on Tuesday for all sorts of appointments with chiropractors, OBs and midwives. So yeah. I’ve had two rice crackers since this morning and a bit of water. I’m getting hungry, but I’m a bit worried about starting to barf at a client or some such thing, so I’m trying to just sit here quietly, hope that Bug Junior is not starving too badly and that I’ll make it till 4:00 when I’m off. And not eat too much of anything, of course, at least not until I get home.

And P really is a bonehead, even though I mean this in the most loving way possible. Sophers seemed to be dehydrated and getting worse on Wednesday when he was home with her, so I made him phone Telehealth. The nurses there said he needs to take her to the ER, promptly, which of course, he wasn’t willing to do. I made him and he got mad and forgot to take food and water for her. He claimed later he didn’t realize it was going to take hours – which makes no sense since we all know about long waiting times in hospitals. When I called him on it he said he didn’t take anything for her ‘cause he thought it was stupid to go to the hospital in the first place. Finally, an honest answer – but then he didn’t get how that was making me even madder. Anyway.

Work threw me a shower this morning, which was very nice, though unnecessary since we pretty much have everything already. And of course it had to happen on the day I feel crappy and couldn’t even eat any of the goodies. Plus, I don’t like being the centre of attention at these sorts of things and parts of my department are so very dysfunctional, that these social occasions always end up feeling awkward. It was alright this morning though, since the room was big enough to keep the warring factions apart, so all in all it was very nice.

We still don’t have a name for Bug Junior! Can’t seem to find one we both like…. We had issues with this the first time around, too, but had way more time to spend on it. Now, I’ve got 7 weeks to go, possibly less if the OB gets his way, and we still are clueless. P thinks that my suggestions are too modern, too soap opera-ish or will definitely lead to the kid being beaten up in the playground. I can’t stand any of his suggestions, so from the looks of it, we’ll have to go with the boy name we had picked out in case Sophie would have been a boy. Sort of feels like cheating, but unless we’ll come up with something, that’s what’s going to happen

He Bit!

2007-05-04T11:52:00.001-04:00

For a nice change from the back/butt problems, midwives, OBs and early c-sections, our ornery old bastard of a neighbour is now threatening to sue us because he still doesn’t want a nice wooden fence between our two yards that doesn’t cost him anything.

This issue, of course, goes back to last year, when we first started putting up the fence. He agreed and then disagreed, so we stopped, thinking he’d come to his senses or move to a nursing home before this spring. He didn’t do either, so now that the weather is getting nicer and we want to spend more time out in the yard, we started up work again. When I say we, I mean P, really. I still can’t move, though hopefully the chiropractor will fix this tomorrow. I was mainly out there with P for moral support, in case the ornery old bastard came out again to yell some more.

We measured some more and went with what the fence inspector had told us – on mutual driveways, you can put up a fence if you leave enough room for the neighbour’s car to pass through. We put up one more fence panel in a straight line and were going to do something angled to the house on a temporary basis that was going to stop the toddler from running away. The thinking was that once we get sane neighbours, we’ll just talk to them and if they are agreeable, we’ll put up the rest halfway down the middle, where we and the rest of the sane people would put it.

But what do you know, next thing we hear is that the ornery old bastard will be talking to a lawyer, ‘cause you know, obviously he was getting ready to move out and the new owners would be needing to park their car in the back. Never mind that his own home-made and most likely illegal extension would prevent anyone from actually getting a car back there or that no one parks in their backyards anymore, at least not on our street. This all came from his daughter, still his official translator and not the sharpest knife in the drawer. Plus, we thought they were bluffing. They were saying things like the shared part of the property extends all the way to the back of the yards and things like that. That didn’t make any sense to us, and given that some fences around the neighbourhood are angled to allow for a car to get into the back should it be necessary, we just figured they were out to lunch. They’d also never talked to a fence inspector and we, smugly, believed that we were in the clear, since you know, we had.

Then last night we found a letter from a lawyer in the mailbox. Apparently, they are going to sue us unless we take the fence down within the next week. We still thought it was ludicrous, but figured we’d better double-check our measurements on the weekend to make sure a car could really fit back there.

But this morning, P’s been bombarding me with emails with his research on the fence situation and they may be sharper than they let on. Ahem. And I guess we've just been smugger than is good for us.... We’ll have to see whether the ownership papers say anything about what is shared and what is not, but the city’s position is that you can’t build anything on what’s shared unless your neighbour agrees. And the only way to settle it if it’s not in the ownership papers is to go to court. Something we’re not really interested in, unless of course we know exactly that we’re right.

Sigh. I was so looking forward to getting some privacy in there, keeping the toddler safe, and just making it into a good hang-out spot, what with me being off for the year and all. Oh well. If there's nothing in the ownership papers regarding how shared the back really is, I guess we can hope that our next neighbours will be saner.

I Will Love The Midwives More If They Fix My Back

2007-04-30T14:00:00.001-04:00

First things first.

I spoke to midwife #1 a couple of weeks ago about the c-section pushing OB and she was shocked. Shocked.

Apparently, this has never happened with this guy and she doesn’t see the point of him wanting me to avoid labour entirely. We all agree that a c-section may very well be a likely outcome, especially if this baby turns out to be on the large end as well – but that’s a long way away from voluntarily having another c-section. It took me a couple of months to get over my first c-section and I have absolutely no desire to go back to that horribly painful place. If I have to, I will – but I’m not doing it just so some OB can schedule his golf schedule around me. Talking to her was good – she’s on my side and she clarified that she’s still my primary caregiver and that I don’t have to agree with what the OB wants me to do. I don’t even have to go to my next appointment with him – though I will, if only to get the results of the ultrasound I had on his orders. That darn technician took her job, especially that bit about them not being allowed to give you any indication about what's going on, a bit too seriously and didn’t say a single word to me, aside from yelling at me that my bladder was too full. And when I told her I only drank what they told me to drink she snapped that “But there’s water everywhere!! Water!! Look!!! Water everywhere!!” It went downhill from there and we didn’t even get to see the baby, so the whole thing was a bit dumb. But anyway, this leaves us without any indication in terms of Bug Junior’s current size, so I’m going to see that darn OB. I figure if I cancel my appointment with him, he may just decide to take forever to forward the ultrasound report to the midwives.

Anyway. The OB guy is now on the hit list of midwife #1 and she was going to bring this up at their team meeting last week. They have been referring clients to him for the mandatory VBAC consults and never had a problem, not in the many years she’s been there. She got more and more upset when I gave her the details and was going to speak to her co-workers about the situation to figure out what to do. Obviously, they are not keen on sending people over there if this is what happens. I’m seeing midwife #2 tomorrow, so hopefully she can give me the low down.

And I’m fully counting on her to fix my breaking back/butt area. I’ve had fairly bad pains in my tailbone and the surrounding area for months, and it’s been getting progressively worse, to the point of it beginning to really make me miserable. Yeah, hurray for the third trimester….

The tailbone pains disappeared one night, just to be replaced by even worse pain in my butt and sometimes lower back. We’re still doing what the midwives recommended we do for the tailbone pain, though we’re not sure it’s responsible for making it disappear. P’s gotten better at the massages and it feels good while he’s doing it – but as soon as I take a couple of steps, it’s back to where it was before. Same with applying heat and everything else the midwives and my pre-natal yoga instructor recommended. It’s not cool.

And this past weekend was pretty much a complete write-off for me. Yoga felt great and I had some hope of it having a more lasting effect – but oh no, I barely was able to walk back to the parking lot and get myself home. The rest of the day was pure agony, worse than before I went to class. Yesterday was bad again and an afternoon shopping trip to buy bunk beds for the growing family almost completely did me in. And it’s not like we were running around all over the place. We already knew what we wanted and where to go in the one store we had to visit – but at some point I was fairly sure that P was going to have to find me a wheelchair or else I’d have to live in the store until the baby comes out. Pure hell.

Somehow I did make it back home and spent the evening sitting on a hot water bottle. It helped and I was able to get myself up the stairs – but once I was up there, I was right back to hell. And nothing had changed by this morning. I dragged myself to work and barely made it from the parking lot to the office. I’m dreading the next time I have to get up and walk somewhere, but my bladder is getting full, so I better get prepared…..

Good thing I’m going to see midwife #2 tomorrow.

Love Thy Midwife

2007-04-11T14:34:00.001-04:00

So I had my first experience with an OB yesterday… something about the hospital’s protocol that everyone who’s previously had a c-section and has a midwife as a primary care giver must be seen by an OB to discuss VBAC and its risks. From the start, this has not been sitting right with me – I chose to go the midwife route and trust them to give me the goods. Plus, I am fully capable of doing my own research, thank you very much.

Anyway, off to the OB we went. Nice guy, really, and he didn’t give us the expected lecture of why I should be having a c-section. So, of course, I thought we were in the clear. But then the topic of Sophers having been the size of a small elephant at birth came up, as it usually does.

“Oh, your first child was over 10 lbs????”

“Yes. 10 lbs, 5 oz and no, I didn’t have gestational diabetes and I also didn’t gain an inordinate amount of weight.” (I’ve had this question before, after all. Too many times to count.)

He rumbled through the paperwork to make sure I really did not have gestational diabetes with Sophs and don’t have it now. “I see. Your tests were negative. That’s good.”

Here’s me thinking again we’re in the clear, but oh no.

“Do you know what you’re having?”

“A boy.”

“Hmmm.”

P and I looked at each other, feeling like we’d failed some sort of test or something. And he continued…

“You’re going to need an ultrasound within the next few weeks and then you’re coming back to see me. Depending on how large the baby is, I’ll schedule you for a c-section at 38 weeks or 41 weeks.”

With that, he got up and walked us to reception to get his staff to book our appointments. Clearly, we were not all that happy with this turn of events, but us being used to the more gentle ways of the midwives were a bit too dumbstruck to really say too much about it. But really, would it hurt these doctors to be a bit more respectful of their ‘patients’? He knew full well that we were there because we had to and that we’d planned on a homebirth with Sophs and that we’d be doing the same with Bug Junior if only they let us. Yet, it didn’t seem to occur to him that we weren’t at all ready to just have c-sections scheduled for us, or maybe it did and he didn’t care. But anyway, I guess we’re spoiled from the midwives. Everything they do is so much more build on educating us, answering our questions, making recommendations, talking to us – and finally letting us decide what we think is best. So, this OB visit was quite the eye opener for us, and not in a good way. It’s not that I didn’t see this abrasive and non-consultative style coming at all, for it is one of the reasons we chose midwives over doctors, but that doesn’t make it any less annoying.

Anyway.

I’m not much in favour of scheduled c-sections unless it’s medically necessary, and would really love to have a homebirth. I know I’m coming at it from the opposite direction as the OB, but I’m also not completely unreasonable (I think). I have agreed to follow the hospital’s darn protocol – going to the hospital early on in labour, staying there and giving birth there, and having the consult with the OB. I have also thought a lot about the possibility of this baby being another big one and am not interested in going overdue if it’s really large. I think I have learned from the horrible experience I had with Sophie that I’m just not build in a way that allows small elephants to come out naturally. All along, I have assumed that another c-section would be a likely outcome and have talked to our midwives about how things would be handled. And of course, their responses are much more in line with what I want – trying for a VBAC, with a c-section as a last resort. There was no talk about delivering the baby early, even though I’d asked about that. Instead, they agreed that there wasn’t much sense in going over by two weeks if it’s a big one, but also agreed that delivering early was pointless and that we should at least try to let nature take its course.

However, I was not prepared for the harsh efficiency with which the OB announced that he was just going to schedule c-sections. If the baby is a big one, he wants it at 38 weeks so I won’t ever even go into labour. If it’s of normal size, then he wants to schedule the c-section for 41 weeks, just in case I haven’t delivered before then. I guess this is entirely normal for OBs, but it’s a big deal for me. I do not want some doctor just cutting me open early, even if it is a big baby, and I do not want to be pressured to have a c-section at 41 weeks in case the baby is of normal size and has not yet arrived. I’m also not sure why he’s getting involved in scheduling ultrasounds and more appointments with me. My understanding going into this was that I had to see him once so he could talk to me about VBACs – not that he was going to try and take over.

Anyway, I’m probably more upset about this than I should be, and if I am, I’ll blame it on sleep deprivation and hormonal weirdness. But I can’t wait to see my midwife next week to find out what she thinks, especially of the 38 week c-section in case this one is big, too. But the whole experience totally confirmed for me that going with midwives again was definitely the right way to go. Not that I had doubts or anything in the first place.

Cranky And Grumpy, And Not Because I'm Pregnant And Hormonal

2007-04-09T15:12:00.001-04:00

So, we had to spend Easter with the in-laws, as usual. And as usual, it sucked. Basically, it’s a three hour drive to get there, a couple of days of boredom, followed by another three hour drive back home – leaving us with a squandered weekend. Not much fun at all.

These visits were never my favourite thing to do, but I usually managed to find some sort of fun in it. Over the past couple of years, though, it’s gone from slightly amusing at best to get me the hell outta here, fast.

Outside of Oma and Opa, Sophie’s got an aunt and uncle with three kids, and one uncle with two kids and a new fiancée there. It could be a lot of fun.

But what happens is this….
Various kids are dropped off at Oma and Opa’s house, leaving their parents to do whatever they want and leaving Oma and Opa chasing those kids around, dealing with their brattiness, making dinner and ensuring that their house does not completely get taken apart. This leaves them little to no time to spend with us, and we usually get to hear various versions of “You must come back soon! We didn’t get so see Sophie at all???” upon leaving.

This time was no different.

We were barely in the door when P’s sister phoned, pretending to ask if it’s okay to drop off one of her kids. This always comes under the guise of “X really wants to see little Sophie!!!” and it’s always okay with Oma and Opa since they have never learned to say no to anyone about anything, except when it comes to visiting us. Anyway, within a few minutes P’s sister shows up, but with all three of her kids. “Surely it’d be okay for all three of them to stay, just for a couple of hours” so they could paint their living room? It sure was okay, even though the two oldest are completely nuts – spoiled rotten, demanding, loud and totally used to ordering Oma and Opa around. And the youngest one has Down Syndrome and needs constant supervision now that he’s started to walk. With dinner preparations and all the kids around, one screeching louder than the other, any adult conversation is generally impossible. And we don’t really need to be driving for three hours to help babysit someone else’s kids.

Anyway, of course they were not picked up before dinner, and no one even phoned to let Oma know. They are all so used to unlimited babysitting that it’s just assumed this kind of crap is okay. So, poor Oma ended up having to make the adult dinner and feeding the two older ones pasta, since they are incapable of eating like normal people (even though they are 7 and 10). And not just any old pasta, oh no. A big discussion was had about the different shapes of pasta that one could be having and it was settled by Oma having to make to different shapes of pasta since apparently shells taste different from elbows. And don’t get me started on Oma putting up with this crap, I’ll never understand how she does this, let alone why.

The parents eventually showed up and pretended to be horrified that their youngest had bitten Sophie in the back of her head so hard that she bled and that he’d been pulling her hair out by the handful. After this happening a few times, Sophs, who’s not afraid of kids ever, had learned her lesson and started running and screaming every time he appeared to be coming toward her. His parents were not too bothered by this, quite the opposite, they thought it was cute and just said something about him not knowing any better. Fair enough, but what was completely lost on them was the fact that they shouldn’t just have dumped their kids there for that long, especially not when Oma and Opa rarely see us and should have been catching up with us.

Anyway, they all stayed and the other son-in-law showed up with his equally horrible children and his new and very dumb fiancée (his wife, daughter of Oma and Opa, died a few years ago). Eventually, everyone left, aside from the son-in-law’s kids, who, apparently, were spending the night. Why, you ask? Who the hell knows. They live 5 minutes away and can (and do) sleep over any time they want. Things finally calmed down a bit, but not even now could Sophers spend any time with Oma and Opa ‘cause it was already late and she’d conked out hours ago.

We were hoping for the next day to be better, but no such luck. The two kids were around and did not get picked up at 10:00 as they were supposed to be. Instead, their dad showed up a few hours later, magically appearing just in time for lunch. Since they had to be somewhere, we all were expected to hurry through lunch and dessert, so they could take off. Me being the bad daughter-in-law did not hurry, but no one even noticed.

At this point, even P had enough. He’s usually (and maybe rightfully so) on my case for not wanting to spend much time with his family, so I try to not bug him about leaving too early. This time, we had agreed to stay until later in the afternoon, but he was ready to go right after lunch. This is very rare for P, but a very good indication of just how pissed he was. But I sure wasn’t one to argue, since I couldn’t wait to get out myself.

So yeah, Easter was just a complete disaster and I don’t for the life of me understand how P’s parents put up with this crap. It’s always like that when we’re there, and from what they’re telling us, it’s also always like that when we’re not there. Those visits used to not be all bad, but it’s totally gone downhill over the past couple of years. Seems like every visit is exactly like this – Oma and Opa are left to deal with all the assorted grandkids, all of whom are misbehaving, rude and annoying brats, and that we’re there goes pretty much unnoticed. Until we leave, that is, ‘cause then we get the comments of “Oh, you have to come back soon, ‘cause we never even got to see Sophie!!!”.

P and I talked about it on the way home and he’s nearly as fed up as I am. A miracle in itself, but I’m ever so pleased. Heh, if it means we have to go less often, I’m all for it. I’d already decided that I wasn’t going back there any time soon and had a bunch of excuses ready to go, but now P seems to be on board with that, too.

27 weeks

2007-03-29T16:12:00.001-04:00

Tired, extremely tired. Even more so when the toddler wakes up at 2:00am and needs to sleep with me (or not at all) and takes an hour to go back to sleep. And when she does sleep, she snores and flails her little arms around and prefers to breathe right into my ear or nostril or any other body part she gets close to. And getting close is what she does. She gets moved over to the other side and even while sleeping finds her way back to within a millimetre of where I am. Meanwhile, P snores loudly on the couch. He is, eventually, going to learn that the snoring people should be sleeping together and that mixing it up is not really helping. Not me, anyway.

Sick. Either again or still, with the never-ending cold. This has been going on since October or November, sometimes pretty bad, other times just a bit annoying, but you’d think after all this time my immune system would figure it out. Not quite. My doc put me on antibiotics during a really bad spell, but even that didn’t completely get rid off it.

No name for the baby yet, not even close. P doesn’t like any of my choices and claims they all lead to beatings on the playground and I don’t like any of his ‘cause they all sound like names of old, wrinkly guys. We may just have to go with what we’d picked out the first time around, when we didn’t know what we were having.

Single motherhood. Thankfully only for the next 4 days, but even that is bad enough. I realize full well I’m lucky in that P does a lot and lets me rest and that 4 days is a piece of cake compared to real single motherhood. Yet, I’m all whiny about it and already feel like a complete wreck.

Work. Need I say more….. Now that we’re what they call transitioning between bosses, things have turned decidedly weird, or rather more weird than they were before. Good thing I only have another 2 ½ months to go before going on mat leave! But having to deal with this crap is just not helping.

Sore, sore tailbone. Terribly sore tailbone. Every move hurts. Sitting, getting up, walking, going up or down stairs, standing up, and even sneezing can be felt all the way down there. Not in a good way at all. The lovely midwife instructed P in how to give me massages to help with it – and I must say he’s been pretty neglectful. Haven’t gotten even a single massage yet! Sure, he’s been busy getting ready for this damn work trip, but am I not more important than his job? Grrrrr. And now he’s gone until Sunday afternoon at the earliest, so I’m on my own. Maybe Sophers could be trained… might be worth a try. And yes, that’s how desperate I am for relief, thinking about trusting a toddler with my tailbone.

Haven’t read one single pregnancy book yet and probably won’t. I just don’t have the energy. Or time. I keep up with one of those silly weekly email thingies, but really only to keep track of how far along I am, since I can’t seem to remember that on my own.

Got in trouble from the midwife for not having dropped off the hospital registration yet. I’m still not keen on having to go to the hospital to give birth, but I should be responsible enough. Maybe this weekend.

Pre-natal yoga is good, unless your tailbone is very sore. In that case, it makes it worse. Maybe it’s good that I can’t go this weekend ‘cause I’ll be on toddler watch. Last weekend, I paid dearly – I went, thinking it was going to make it better, but by the time I got home, I could barely move. I winced my way through the weekend and tried to move as little as possible, which is not all that easy with an energetic toddler around and a husband who needs to work some more to get ready for his work trip.

Junk food is not good. And it doesn’t help when all the people at work think it’s okay to gain 60 lbs plus, ‘cause that’s what they were told to do way back when. So they keep offering it, pushing really ‘cause “You deserve it!!!” and it’s ever so tempting to take them up on it. Had to lie to the midwife about weight gain since the last appointment ‘cause I was too embarrassed to admit the ugly truth. Good thing that my overall gain has been good, so I’ll slowly add the missing pounds in over the next few appointments, so that in the end, it’ll all come out right. Ahem.

Loving the kicks. That was my favourite part the first time I was pregnant, too, and I’m a bit sad that Bug Junior is not nearly as active as Sophers was. But still, I so love every little movement and it just makes me happy. Otherwise, I’m still convinced that being pregnant sucks and can’t possibly be as enjoyable as some people make it out to be.

What else?
The toddler is basically potty-trained and accident-free. Mostly she even lets us know when she has to go, though sometimes we have to just put her on. I’m pleased.
In-laws at Easter. That will be boring, for sure, and Sophers may be presented with yet more gifts we’ll have to get rid off. Apparently, the Easter Bunny left a doll for her that makes animal noises when you touch its hands and feet. What the hell????? Are they trying to frighten her or screw her up totally? And how can they still not know that we like for her to have toys that make some sort of sense? Yes, she is getting attached to dolls now and I’m on the look-out for the kind she likes, but it sure won’t be making animal sounds! What is up with that anyway? I didn’t even know they make that sort of thing….