a lot has happened in the past couple of weeks. walker recently attended a support group for caregivers of loved ones with brain tumors. the people there said they were blown away by how much we’ve been able to get done in such a short amount of time. part of it does have to do with our organization and drive, but i’ve also realized that everyone suddenly starts to move with an increased sense of speed and urgency when there is a brain tumor involved. go figure that’s what it takes to achieve improved efficiency. maybe i should let the federal government know. (and to answer your question, yes, walker said the support group was quite fight-club-esque — and very cathartic.)
first was the biopsy. several thoughts came either concurrently or in immediate succession when i woke up from surgery: 1) i am catheterized. hmm. they didn’t tell me they were doing this. very uncomfortable. 2) i can’t wiggle the toes on my left foot. i could do that before. kinda scary. 3) thanks, anesthesiologist for keeping your promise and making sure i woke up with my glasses on. still feel bleary-eyed, though. i think i have vaseline on my eyelids. they didn’t tell me about this, either.
before the biopsy, the neurosurgeon came into the pre-op room, squeezed my hand, and said, “it’s going to be a beautiful day.” the next day, when i was still in the hospital, i got a call from him on my cell phone, explaining that he couldn’t come see me in person because he’d had an emergency at county. “but wanted to let you know yesterday was a beautiful day, just like i promised,” he said. “we got all the samples we needed, and it looks like things are in our favor.”
vague, but hopeful. plus, he’s been right so far, every step of the way, so i believed him. he also told me he’d been able to avoid shaving any portion of my head for the biopsy. “you’re just as beautiful as ever,” he assured me. (personally, i think he was mainly concerned about my hair because he has personal experience with hair-vanity, but that’s sort of beside the point. also, tangentially, the nurses on the neurosurgery floor apparently love him. one of mine said she’d trade her boyfriend in for him any day. i didn’t tell her that he probably wouldn’t trade in his boyfriend for her. didn’t want to burst her bubble or anything.)
after that, i learned to walk with a walker. (walker 2.0, i call it. dum, dum, ching.) i lost significant function in my left leg/foot during the biopsy, but it seems to be coming back gradually each day, and i’ve now progressed to — as walker 1.0 says — a pimp cane. learned how to ascend/descend stairs. (“up with the good, down with the bad,” instructs the PT.)
moved to our beauuuutiful new apartment in westwood/century city. walker says i don’t want to call it just plain westwood just because i have bad associations with the bruins (could see them running drills on the practice field from my hospital room). he may well be correct. vivid memory from college: riding around westwood in the big, red suburban with grant, blaring the song, “i, i love usc…and i hate ucla, and i hate ucla..” am i allowed to continue to hate ucla football if ucla doctors save my life? i hope so. it wouldn’t do to be required to give up one’s undying love for one’s alma mater to save one’s life.
anyway, the apartment is lovely. best.decision.ever. an extra room for family to stay. two bathrooms (ours with an oh-so-convenient step-in shower, that is now equipped with the gray-plastic-and-aluminum shower stool that every 85 year old dreams of). huge living and dining area, dishwasher, airy and fresh west-facing balcony. the list goes on and on. and it’s already super well-organized, thanks to mom.
then, just after our (unbelievably awesome!) craigslisted dining table was hauled upstairs by walker and dad, it was time to go back to ucla for the unveiling of the results. drum roll, please.
oligodendroglioma (ŏl’ĭ-gō-děn’drō-glē-ō’mə) n.
A relatively rare and slow-growing glioma characterized by numerous small, round or ovoid oligodendroglial cells uniformly distributed in a sparse fibrillary stroma.
there were hugs all around. my mom and dad and walker seemed relieved. joyful. the cancer is slow-growing. somewhere between one and four percent of cells in my brain (the cancerous ones) are getting ready to divide, which means that all the others are not. this is good, apparently. but the tumor is very diffuse, as they said before. to radiate would require nearly whole-brain radiation, which would result in significant cognitive deficits. they don’t want to go that route, as they are eager to keep me as cognitively functional for as long as possible, especially considering my age. also sounds like they’ve ruled out resection, since so many of the bad cells are mixed in with the good cells, and they just wouldn’t be able to get it enough for the benefits to outweigh the risks. so, it looks like chemo is my only (and actually the best of the bad options) option.
28-day cycles: five days on; 23 days off. oral delivery. (the drug is called temodar.) side effects include nausea, fatigue, possibly some indefinite lack of mental acuity they informally refer to as “chemo brain.” for at least one year, maybe two. (the treatment is “safe” for two…haven’t yet had time to research what “safe” means, in this context.) won’t lose my hair. score two for the hair! guess i’ll have to wear that pink wig i was looking forward to for halloween, instead.
i could live for 20 years. more, if there are — and i’m sure there will be — additional medical advances in the intervening period. it’s hard not to just think of the number though. 47 seems young. i won’t have accomplished everything i’d like to accomplish by then. i don’t want to die when i’m 47. not to mention that they don’t seem particularly positive that i’ll regain full functionality in my left leg. not to be a total downer, but 20 years full of chemo and, eventually, radiation and twice-monthly blood-drawings and constant MRIs and not being able to walk right (much less do yoga, hike, bike, etc.) just doesn’t sound like what i had planned.
i get that there are silver linings and that the bad news is the best bad news available. but, for right now, i’d like to mourn the fact that my life as i knew it is over. and that this fucking brain tumor will probably kill me.