Still Here :)

Thanks peeps, for continuing to visit my little horror story even though I really don’t update much anymore. I found it helpful to write about what was happening and I learned 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 the road, 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, at least not in the long run. And for that I am grateful.

I continue to have regular check-ups with my neurosurgeon and feel like a seasoned professional in dealing with his bitch secretary. She continues to mess up the setting of the appointments and schedules me for random MRIs, but it doesn’t freak me out anymore. I know that when I get to see the doctor, he’s more interested in talking shop with the Fellows he is teaching than answering my questions. I’m good with that now, too.

He gave me my life back and he’s there in case I need him again, something that becomes less and less 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’s a long-term thing, but I’m no longer freaked out because of it. Last time I went to see him just a couple of days ago, I didn’t even get sweaty palms anymore and finally saw the humour in his not so patient-centred behavior. The only thing that hasn’t changed is the big wave of relief and the ensuing natural 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 probably here because you’ve just been given the same or a similar diagnosis or are somewhere in the midst of the craziness surrounding diagnosis, treatment and recovery. Or maybe you’re here because you know someone who is.

Good luck, I hope it works out for you!

Finally!

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

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!

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 :)

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

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

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

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

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

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.