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12/8/2016 Latest post:
I have a brain tumor. Yes…that’s what I said. Well, that’s technically not true according to the doctor. It's not exactly a benign lesion, either. He said there aren’t great words in the English language to describe it, so he’s going to stick with brain tumor because it’s easier. Medically, it’s called a craniopharyngioma and I was probably born with it. It has slowly grown over the last 45 years and has finally gotten big enough to cause some problems. Just so I'm clear, this is not cancer. The doctor even said that this thing, even if left completely untreated, probably wouldn't kill me. It could keep growing and make life very difficult as I lost my sight completely, my pituitary gland failed, I started getting migraines, and a host of other unpleasantries, but it wouldn't kill me. I'll take his word on that, but we'll be treating it.
The prognosis is good…very good, actually. But don’t get me wrong…I’ve been freaking out since we found out about it a few months ago. We’re very happy with the surgeon who will do the work, Dr. Michael Sisti. We’ve had four separate neurosurgeons from around the country tell us he’s got the best hands and the best interoperative judgment on the eastern seaboard. If this guy can’t get this thing out, no one can. Rationally, I know this will be a very delicate surgery performed by a very skilled and experienced surgeon who has told me that I should expect to live a long, very normal life after he's finished. Psychologically, we’ve barely been holding it together.
We found it a few months ago after seeing a number of doctors because of a problem I’d been having with my vision. Specifically, I thought I was seeing white spots. I assumed it was an eye problem and went to my optometrist. She said my eyes were fine and sent me to an oplthalmologist. She said my eyes were fine and sent me to a different optometrist, who also said there was nothing wrong with my eyes…and sent me to a visual therapy doctor. That guy said he was willing to see if he could help, but thought I should have an MRI to rule out anything else before we started. He told me he didn't expect the MRI to show anything, but it would be good to confirm before proceeding on a course of therapy. And, so, it began. The doctor who ordered the MRI said I had a “lesion in the area of my optic chiasm.” That sounds so nonthreatening, doesn't it? I suppose if he'd said, "You have a golf-ball sized brain tumor under your brain, in the left center of your skull. It's pushing against your pituitary gland, your hypothalamus, your optic nerves, carotid and vertebral arteries, and needs to come out," I may not have responded too well. But another MRI, a CT scan, and blood work confirmed just that.
Today, I was officially cleared for brain surgery in a couple of days, on my mother's 65th birthday, no less. She said it's been a good day for her...a lucky one...and we're hoping for that to hold. Dr. Sisti pointed out that it really isn’t brain surgery because he won’t actually be doing anything to my brain, but he’s going to cut a hole in my head so I’m going with it anyway. He’ll be going in around my left temple, taking out a keyhole sized piece of my skull, going behind the eye and under the brain and taking out as much as he can without pulling on anything else. These growths are usually pretty "sticky" and this one is in the high rent district in my head as I previously described. Being overly aggressive and pulling on the tumor to get it all out runs a very high risk of significantly damaging something kind of important. Dr. Sisti is the best at deciding when to go after something and when not to and I'm confident he'll get as much out as is safe without messing anything up worse than it already is. Dr. Sisti's officemate said that a surgical home run will be to have me leave the hospital with the same level of functionality I have now, with no more visual loss than I have today. We were seeing him the first week in October and he went on to say that any visual recovery would be like the Cubs winning the World Series...I swear that's what he said. You never know…it could happen!
My stepfather will be posting updates for me on the surgery day, December 14th, and will keep doing so at least daily until I'm able to do it myself. We don't want or need for anything right now, except for a positive surgical outcome. We will happily take anything you think will help that--prayers, well wishes, etc. In the meantime, please pray for Melissa, Isabelle, Madeline, my parents, and the rest of my family. Thanks in advance for that. Also, if you want to forward this onto someone that might want to know and didn't get notified, please do so with my most sincere apologies for having missed them. It's only because I either didn't have their email address or I just missed them due to not being able to concentrate because all I've been able to think about for the last few months is the tumor in my head...just sayin'!