home: the lap of luxury

I am home for the holidays, and couldn't be happier. Sitting by the fireplace with my parents, drinking tea, eating my mother's fabulous cooking, going on walks in the woods with the dog, seeing old friends - it's exactly what I needed to recharge and relax before starting my ACE regimen at Stanford on Tuesday, December 26. This round will be easier by definition because it will be outpatient, which means that I will only have to physically be in the hospital during the day, and will be able to crash at home at night. I have no way of knowing how I will tolerate the side effects, though. From the doctor's perspective, I can understand that since everyone reacts differently, they can't give me much information. But from the patient's point of view, this is shocking. What do you mean, "you don't know"?! That's ridiculous! How am i supposed to prepare myself? Jerks!

amifostine and woody allen

sunday, december 15, 2006

my hands shake and tingle. my ears scream. my stomach flutters. i try to ignore, and to enjoy being back at my apartment, on my couch, with no constantly beeping IV machine, no nurses coming in once-an-hour to take vital signs... a multitude of insignificant but comforting specks of control over my environment combine to make all the difference.

yet more unquantifiable risks to be weighed against fear. should we give me amifostine, which supposedly may help protect my ears from long-term permanent hearing loss from the cisplatin? the mechanism by which it supposedly protects sound-sensitive cells from being killed by the chemo sounds suspiciously non-specific. why wouldn't it prevent the cancer cells from being knocked off as well, thereby nullifying the chemo's intended effect? is there some kind of differential effect based on dosage? how do we know what that dose is in my case? this drug is not usually used for people in my situation. why not? because we mostly give this kind of harsh chemotherapy to older guys who are going deaf anyway?

i let myself be convinced by unconvincing arguments. once again, trust had to be placed in the individual oncologist's experience over the data, breaking the "rules" of how we are taught to approach medicine. once again, i am reminded of how different the whole system looks from the patient's side. statistics become practically meaningless when it's your own life you're talking about.

whatever the long-term effects or lack thereof, the amifostine was horrible. while it would be easy to blame a surreptitious trip to the taco truck (from which my oncologist caught me coming back, wag of the finger), the timing of the misery points squarely at the drug. starting fifteen minutes after the injection, i spent all afternoon last thursday retching my brains out, before being sent home to three more days of nausea. i contend that my visit to the taco truck merely made the whole business less pleasant than it would have been had i, for instance, been eating ginger snaps for lunch.

suffering is highly overrated, my friends. i really think i could develop all the empathy i needed in life with about 24 hours of misery. four days on end is really overkill.

many months ago, we bought tickets to see woody allen and his new orleans jazz band at UCLA's royce hall. i don't have a particularly close affiliation with woody allen, nor with new orleans jazz music, but i just felt like i had to go. despite the queasiness and the muffle-headed, fuzzy hypersensitivity, it needed to happen. it was a statement to myself, an affirmation. i made it. months ago, i planned on being around and going to this show, and despite all of the crap that has happened to me since then, dammit, i'm still here! blow, woody, blow!

round 3

i slide slowly once again from almost-normalcy into the chemically-induced hazy, woozy, uncomfortable, time-warping, personality-distoring state. mercifully, i have little specific memory of how this was the last time around. my brain hasn't been very efficient at remembering much of anything. then again, it all comes as a kind of vague surprise each time.

the big news: my tumor markers are falling along the half-life curves! let me explain: my tumor secretes a couple of different compounds into the blood which allows us to follow its status. everything in our blood - red blood cells, hormones, etc. - has a "half-life", which is a fancy way of measuring how long something circulates around before getting broken down and excreted. my markers have fallen at a rate that indicates that they are no longer being produced at all. now we have biochemical evidence that backs up the observation that my belly is shrinking. the chemo is working!

while this is great news, it doesn't change anything in terms of the treatment plan. we are still going to smash away until the end of february, to improve the chances of having killed it all. i can't say that i am looking forward to it, but i am incredibly relieved that things are on the right track. when the oncological team comes by each morning to do rounds, they have little to say, which is a very good sign. "feeling OK?" "yep." "great. everything is looking good! any questions?" "nope!" "OK, see you tomorrow!"

i am thrilled to say that i am going to get a much-needed break from LA. i got lucky in terms of timing: the next cycle is a different chemo regimen, and it happens to be one that is given routinely at most cancer centers, as opposed to the highly specialized regimen i have been on up until now. we have set things up so that i can do the next cycle at stanford, which allows me to spend the holidays at home in palo alto. i will be heading north this sunday, recuperating over the following week in the comfort of home. on the 25th, i will start treatment as an outpatient at stanford for thee week, and then have another week to recover before heading back to LA and beginning again as an inpatient at norris. this is a good thing from top to bottom. i get to have a change of scene and routine, feel like i am having some sort of holiday, catch up with bay area friends, spend time with my parents. amelie will be heading home to paris, which will give her a much-needed break from the daily stress of dealing with all of this drama.

correction, for the record: the financial situation is not as bad as i made it out to be a few entries back, though it remains ridiculous. there is a $3500 cap on out-of-pocket expenses for the school year, but this does not include psychiatric/psychological services, which have their own $3500 cap, nor does it include medication, which has no cap and a ludicrous co-pay system. one question that remains: does chemo count as a medical expense, or as a pharmaceutical expense? this stuff can't be cheap.

i'm pregnant!

no, no, not amelie, ME! my tumor secretes human chorionic gonadotropin, which is what pregnancy tests measure. it's name is toomie (the tumor), but please, don't send flowers. toomie will not be with us for long.

a much-needed weekend off in the desert

hope springs resort. highly recommended. appropriately named. these days, what used to be cheesy can be surprisingly sublime. like going to joshua tree.

belly shrinks!

alternativity

i have emerged from chemoland! it really took until tuesday to start feeling human again. of course all sorts of strange things keep happening to my body, some predictable (night sweats, constantly ringing ears, shortness of breath on exertion), some not (random crashes of piercingly loud sound, sudden moments of flu-like malaise, random body pains), but on the whole, i am back to being a relatively functional person.

i had my first acupuncture session this morning, and it was a truly wonderful experience. i had few preconceived notions about acupuncture, except that its precepts do not make sense when approached from the western medical paradigm. i still have no idea what kinds of improvement or results to expect from continued treatment, nor can i say that i noticed any particular change following the short needling and moxa-burning this afternoon. that said, it was such a great experience that there is no question that i will be coming back for more.

it was an entirely different kind of health care than we are taught in medical school, or than i have ever experienced. it was the first time that i have ever felt that someone was taking ALL the time that was needed, to cover ALL the bases, in order to take care of ME, as a whole. oh! THAT'S what wholistic means?! i thought it had something to do with the vitamin aisle at whole foods! the acupuncturist, neil gumenick, was such a perceptive and wise interviewer that in the end, i don't CARE if the needles are anything more than placebo or if the incense does anything more than smell good - he is the best talk therapist i could hope for! the intake interview alone took three quarters of the allotted two hours, and HE asked ME if it was OK if we went a little over. the place was so comfortable, it made me realize how horrible hospitals and doctors offices really are. these people are obviously professionals, working from a highly developed and subtle knowledge base. the fact that i don't understand the system only makes me more interested in what is going on. i was also told that i presented a complex set of challenges, and that it would be a learning experience even for an accomplished acupuncturist. he gave me a book to read, and i am excited by the opportunity this opens to learn about a different culture of healing.