Meningioma Pictures? Finally?

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

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

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

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

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

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

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

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

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

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!