Wednesday, May 21, 2008

senator kennedy

i can't believe senator kennedy has a malignant glioma--brain tumor. it's so sad, and i think the one politician who really summed up all the emotion surrounding such news yesterday was obama, who described the news as 'heartbreaking.' not saying other politicians aren't obviously affected and upset and pulling for the guy, just that that one word seemed the most appropriate.

reading all the news about kennedy, and about the dignosis and prognosis was unexpectedly raw yesterday--i seriously just had flashbacks to a couple years ago hearing my dad's diagnosis. scrambling for news about what brain tumors do, how they're treated, how the outcomes look--i think the search for answers in my pop's case is still ongoing, albeit with less vigor.

getting one's head around the facts is easy--but brain tumors are such individual little assholes. the one in my dad's head, even if it turns out to be the same type as kennedy's, was it's own entity. so even looking at past cases and statistics is almost useless--most people die from brain tumors. the length of time associated with dealing with them and the affects on everyday actions are what differ.

my pop survived longer than most for his age and health and type of tumor, but it wasn't an easy road. the swelling associated with tumors is great (there's a really great sum up of tumors on npr's site today), and my dad never fully recovered from the initial craniotomy. the swelling from the tumor, mixed with the swelling from surgery, the chemo, the radiation, his medication--it just all added up, quickly. dad needed a shunt to help relieve brain swelling, and remained on steroids at different levels the length of his illness. the steroids caused other massive problems, like bone death, leading to 2 broken hips, possible hairline rib fractures, etc.

my dad started out in speech, physical and occupational therapy, but these quickly waned to no therapy, as he just wasn't making any progress, and combined with the chemo and radiation, he was too tired. and we learned soon after, the swelling in his brain was getting worse and worse and wasn't helping. he received physical therapy after the initial hip surgery, but even that was a major struggle. pop also suffered from aphasia, so his speech, especially at the beginning of his treatment, was difficult to follow. numbers, dates and basic words for things were lost, and he'd often mistake us kids for each other, which isn't all that out of the norm, but when you're watching your father struggling to remember which kid you are, it's tough. i guess his sypmtoms mirrored alzheimers in many ways, but it was a much faster progression, and it wasn't alzheimers. one day he knew what was happening, and the next he didn't. his speech at times got better, and every now and again his memory seemed to be perfect--sort of culminating during his speech at his and my mom's anniversary party, and slowly declining after that.

i guess this all just flashbacked in my mind, reading everyone's well wishes and words of recovery for senator kennedy. the one thing that almost everyone said was, 'he's a fighther, so if anyone can beat this...' but i just cringed. brain tumors aren't the equivalent of the cliche picking yourself up by your bootstraps. they do require great bravery, but they're also humiliating. you lose a lot of functioning in the one organ that dictates functioning. you don't even know where your bootstraps are, let alone that you need to find them and pick them up.

i hope his tumor is small, moderatly aggressive, and that they caught it very early on. i hope his recovery is successful, he falls into remission as soon as possible, and that he survives a long time. but i'm slightly pessimistic. and i feel kind of bad about it. i think the one 'good' thing about it is that senator kennedy raises the awareness factor of brain tumors, their nature, recovery, outlook.

i'm pleased that i was able to participate in the brain tumor walk. it's easy to lose someone to a hearbreaking illness, and then to forget that funding for research for any improvement in the field is essential. it wasn't until i read the high-profile diagnosis that i remembered that, sadly.

1 comment:

Unknown said...

bethany, i just read your thoughts on ted kennedy. in many ways they mirror my own, but you express it so much better. why don't you share your thoughts with the abta. i am sure our reaction to ted's news affected many other families the same way. luv, mum