we move fast; it moves slow

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.

radioactive isotopes

yesterday kinda sucked.  everything was going smoothly at first:  they injected me with a radioactive tracer (dopamine isotope), which apparently lights up in the presence of cancer.  (is that the first time i’ve written the word cancer?  it seems like a heavy, almost-taboo word, at least for someone my age.  i can’t decide which is worse — cancer or brain tumor.  maybe i’ll get used to them both, eventually.  i guess i’ll have to.)  i asked the pharmacologist who injected me with the dopamine isotope if i’d turn into a superhero.  he responded that although they’re still working out the kinks in the superpower isotope, i would need a letter from my doctor if i intended to fly in the next 24 hours — just so i wouldn’t be arrested on suspicion of nuclear terrorism.  you know, everyday, run-of-the-mill stuff.

it was after the radioactivity and the PET scan that things went a little downhill.  the MRI tech botched the IV for the contrast dye profusion…twice.  when i told him that he seemed less-than-confident about the proceedings, he had the audacity to tell me, “actually, i’m just not confident about your veins.”  i let him know that he was relieved from duty and if he could please have someone else do the IV, that would be lovely.  thanks.  once i was finally inside the MRI machine, i could feel the dye rushing through my veins.  it felt like a mini version of the big hydroelectric generator we saw on our camping trip to huntington lake a couple months ago.

i was inside the MRI machine longer than i’ve ever been before.  they placed a plastic cage-like piece over my face and locked it into place.  i found myself thinking about winston smith and the rats.  fortunately, brain MRIs are not my greatest fear.  i was wondering, though, what would happen if there was an earthquake.  perhaps the MRI machine is one of the safest places to be.  on the other hand, would i be able to undo the lock on the face cage?  i wished that there were in-case-of-emergency instructions written in size 8 font on the little mirror that allowed me to see out of the machine.  so i’d be able to get out if there was an earthquake.

bang!thump!drone.hum. the inner workings of the MRI sounded like machines on the war path — or, maybe, on a lighter note, the soundtrack to wall-e and eva’s first dance.

i was inside the MRI machine longer than i’ve ever been before because they had to do a highly detailed scan of my brain.  tomorrow, when i have my biopsy, the neurosurgeon will plug my brain’s coordinates into his computer to map the exact spots from which he’ll extract samples.  pretty high-tech stuff.  i feel fortunate to have such advanced technology on my side — but i also think about what other technology is waiting around the corner that could make the process simpler, easier, more effective.  the grass is greener around the corner.

other tests, too, yesterday — chest x-ray, EKG, blood work — which resulted in my finally knowing my blood type (O positive), something i’ve always passively wondered about.  it is better to give than to receive.  or so i’ve heard.

i’m off to bed.  biopsy at 8am tomorrow.  wish me (and the neurosurgeon) luck!

i am naomi’s sense of utter gratitude.

i am grateful for so many things that i don’t even know where to start.  most of all, i think, i’m grateful just to be me.  and by that i mean grateful for the people in my life — my many incredible friends and family members — without whom i wouldn’t be who i am.  knowing that there are so many people out there willing to put their lives on hold to be there for me — especially walker, who has already changed his life to help me and who i know will continue to take care of me no matter what comes; my parents, who were here the moment i needed them, and will continue to be, for as long as it takes; tim, who helps me get through every day with a listening ear, ready encouragement and brotherly love; and sue, walker’s mom, who has gone way beyond the call of duty in leveraging her connections in the medical world to ensure that i have access to the best, most timely care available.  (did i mention that the neurosurgeon at duke who did ted kennedy’s brain surgery is looking at my MRI this week, thanks to her?!  and that she was able to get my PET scan moved forward by two weeks?  sue, you’re my hero!)

for my education and, as strange as it sounds, organizational skills.  there’s so much to keep track of, to organize, to plan, to stay on top of, to comprehend.  thanks, mom and dad, for making sure that i was prepared to deal with everything life threw my way.

for the fact that i live in a city that is home to one of just a handful of brain tumor centers in the US — that world-class care is at my doorstep, and that my neurosurgeon understands.  that i have the resources to seek second opinions and be really, really sure about my course of treatment before i embark down that path, whatever it may be.

for a job that offers flexibility in allowing me to continue to work from home when i’m able, and for a boss/friend who has provided an unbelievable measure of support, concern and assistance throughout this process.

for all the offers of assistance in both material and immaterial ways.  please know that i will be taking you up on those offers.  it means more than you know to be offered the simplest things — just to sit and talk, to pick up groceries, to unpack boxes, to shuttle my parents from the airport, to give me hugs, to help in any way possible.

i think a lot about the people who don’t have the resources and support that i have, those who experience barriers to care, who don’t have insurance coverage, who don’t speak english as their first language.  my friend jenny suggested that, perhaps, when this is all over, i could advocate for them — help ensure that a few more people in this incomprehensible situation gain access to at least some of the resources and supports that have smoothed my way thus far.  i think it’s a great idea, a way to leverage my own experience and pay it forward.  count me in.

the discovery, through someone else’s eyes

i keep thinking about tom.  the radiologist at huntington-hill imaging center.  they squeezed me in that day — the day after my first visit with the neurologist — for three MRIs (brain, neck, spine), so i had to wait there for a long time.  on and off the table for hours.  watching terrible morning shows that turned into even worse daytime shows as the day wore on.  it helped that i was able to sit in my own little dressing room in my shapeless, blue hospital gown and long, green, rubber-bottomed hospital socks — instead of in a waiting room with everyone else.

it’s hard to imagine feeling more vulnerable than when you’re in a hospital gown.  it’s almost like a declaration of incompetence and defenselessness — you are completely at the mercy of those with the machines, the knives, the needles, the tubes.  you must cast off not only the accouterments (earrings, a pretty belt, a watch, maybe) that make you an individual, you must also forego even the basic dignity of undergarments.

the folks at huntington-hill imaging center were very kind, though, especially tom.  he grew up in santa monica, just a few blocks from our little beach bungalow, and went to high school here.  i keep thinking about my conversation with tom because he knew before anyone else.  i didn’t find out that he was the first to know until later, when i asked the neurologist how she found out so quickly.  (her assistant called when we were on our way home from huntington-hill imaging center that friday afternoon to let me know that the doctor wanted to see me at 8am on monday morning.  she was supposed to be out of the office for the whole week, so i knew right away that something was terribly wrong.  everyone tried to convince me that it just meant she wanted to start treatment immediately, but i knew.  a neurologist doesn’t schedule an appointment at 8am on a monday she’s supposed to be out of the office unless it’s a big deal — unless something is terribly wrong.)

she found out from tom.  because he called to tell her as soon as he saw the MRI.  while i was still on the table, maybe.  or changing out of my shapeless, blue gown into my cute, tropical print dress from H&M, reclaiming my individuality, not yet knowing that my life was forever changed.  but tom knew.  was it before or after the smalltalk about santa monica?  tom knew.  but he couldn’t tell me.

serendipitous convergences

driving back from my first visit to the neurologist in pasadena.  (she was amazing — maybe the best doctor i’ve ever had — but she was wrong.  she spoke with near-absolute certainty when she said she was sure i didn’t have a brain tumor.  sure it was MS.  some medicine, some rehab, and i’d get back to my life.  wrong and shocked and forthright.  didn’t mince words.  just came right out and told us:  “my dear, you have a brain tumor.”  i cried, but only briefly.  i haven’t cried since.  i don’t really feel like crying.  there’s too much to be done to cry.  also, i’m afraid that if i crack, everyone else will, too, and i can’t have that.  i need everyone not to crack.)

so, driving back from my first visit to the neurologist, the one during which she assured me there was no brain tumor, the first song on the CD that happened to be in my car’s CD player came on.  “game called life,” by leftover cuties.  walker quickly turned it off, and i didn’t know why until i listened to the lyrics again later, this time driving with my parents back from my second visit to the neurologist in pasadena, the one during which she told me, shocked, “my dear, you have a brain tumor.”

he whistles, and she sings, “it’s so hard to turn your life over.  step out of your comfort zone.  it’s so hard to choose one direction.  when your future is unknown.  is this some kind of a joke?  will someone wake me up soon?  and tell me this was just a game we play, called life?…and at, at the end of the road, is there someone waiting?  do i get a medal for surviving this long?”

the whistler is my neighbor, austin.  he and his girlfriend, katie, have a dog named zeke.  my grandparents have a dog named zeke.  my grandpa also has cancer.  (wish this didn’t have to be something else on my grandma’s plate.  wish this didn’t have to be something else on anyone’s plate.)  leftover cuties is austin’s band.  we watched them play the song live a few months ago at first fridays on abbot kinney.  it gets weirder, though.  when i went to youtube to look up the song lyrics to write them out, i discovered that “game called life” was chosen as the theme song for the new showtime show, the big c, in which laura linney has — guess what? — cancer!

is this some kind of a joke?  will someone wake me up soon?  and tell me this was just a game we play, called life?

i am naomi’s stream of consciousness.

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.