am i numb? it’s too much to take in. too much to process. or am i just strong? they keep telling me i’m strong. i guess i should believe them. it’s hard to see oneself objectively in these situations. i think i prefer stubborn. i told the UCLA neuro-oncologist (md, phd, very important) to please address himself to me. he was looking at my parents, at walker. like i was an item to be discussed. a non-entity. inanimate. am i already dead?
i want to feel in control. i want to take the reins. this is my life, you know. my brain. my tumor. my brain tumor. maybe if i say those words enough — aloud, written, whispered, shouted, perhaps — they’ll start to seem real, instead of something that happens to someone else. i am a statistic now. zero-point-two percent: a small statistic. does that mean i’m more important now? less? in fight club, edward norton’s character says: “this is why i loved the support groups so much, if people thought you were dying they gave you their full attention.”
the neurosurgeon seems to understand:
first, he understands that we have to take this one step at a time: PET, MRI, biopsy, pathology report, take my case back to the brain tumor review board (it was already there once, this wednesday), get a second opinion from UCSF. then, and only then, make a decision about how to proceed. the one-step-at-a-time approach makes things more manageable in some ways. no sweeping generalizations. no big-picture thinking. but it also makes things more difficult. how do we find a place to live — a place where people can come visit and help take care of me — if we don’t really know what we need and when we’re going to need it? the waiting and the guessing is tricky, but not unbearable.
second, he just plain understands. the first thing he told me is that he’d treat me like he would his sister. he does have a sister; i asked. he also said he’d been on the other side of the table and knows how it feels. i believe him. i feel like i’m in good hands, capable hands. hands that care to give me all the information i need to make the right decisions, to empower me, to help me, as he put it, be at peace with the situation.
i do feel at peace.
but does my brain? what’s going on in there? i haven’t looked at the MRI yet. it’s like there’s some alien invading my body, and i don’t really know what it looks like. they say it’s diffuse — as opposed to golf-ball-like. it’s got its tentacles reaching into the pathways that help control my body. it’s pushing the good, healthy cells out of the way, impairing my motor function. that’s why i have trouble walking. silver linings: it’s not affecting my arm/s (yet) so i can still type and write. good thing, since there’s so much to do, so much to plan, so much to organize. also, it’s my left leg, not my right, so i can still drive and maintain my independence. i’m beginning to realize, more than ever, how much i value my independence. (though also how much i value having people who love me on whom i can depend. two sides of the same coin, i think.) i found out this week there are no pain fibers in the brain. who knew? at least my brain’s not in pain. at least i’m not in pain. not yet.