there is the effect on me of the cancer, and the effect on me of the cure. perspective dictates that both yesterday being minimal should be cause for widespread e-joicing. (noun, gerund: a joyous response to good news in a blog; also see e-lation)
now there is the effect of the study, and the means of realizing the study. yesterday, those were a bitch.
got home from the gig Thursday eve/ Friday at 12:30...went to bed not long after.
could not sleep.
sleep has been trouble for awhile. I'll sleep for like four hours; then my old school body needs another position, and my new shoulder hurts in any other. negotiations can lead to a rosary of sleep beads, sometimes even approaching adequate.
Thursday after the gig I never went down.
it's as if my body has a new odd natural response...ok, you may not treat today that different from any other day, but I'm worried sick about it, and you're not sleeping tonight.
got up at 5:45; to hospital at 7am Friday for a day predicted to last til 10pm.
the port was not yielding blood right away. rituals were exercised; I sang Mickey's "Sure-Flow Cath " song from A Mighty Wind to myself silently. they got the labs done.
I knew my vanity concerning chest hair had to be sacrificed, now, as EKG's were needed every two hours. I asked Nicole, the pretty darned great nurse seeing me through the day, to shave the part of my chest whee the stickers would go before they were applied. it threw her a bit, but she found a razor.
in retrospect, it was too little, too late.
the Nutlin-3 was sent by the hospital pharmacy by 9...it was predicted to take as long as til 10am. for 12 hours after dosing, they wanted my reactions monitored.
2500 grams...five 500 gram pills. not quite as big as my daily vitamins...but not some blue screen blue speck either.
and two "premeds", which I somehow hadn't expected. a quick IV dose of something I tried really hard to remember, that sounded like it started with "cait...", and ativan.
ativan I had had a prescription for since the first chemotherapy, and never taken a pill. it was described as a more powerful anti-psychotic than compazine, and an anti-emetic to be taken when compazine wasn't doing the job.
it supposedly made one "mellow".
I wanted no part of any of it. I went into a dance at the mention of atavan yesterday.
I mean, like Mc Fly says in Back to the Future, you're the Doc, Doc. here was a bona fide experimental drug I was taking for the first time. and a team of women watching me like nuns with OCD, sensitive to anything I could need or any trouble I could have. (oddly echoing some of my favorite erotic literature)
life, cancer, Nutlin-3, and these nurses were not things I should be fucking around with.
but I negotiated starting with half an ativan.
what it did may have looked like mellow from the outside, but felt like listening to "The Wall" in its entirety. thick. heavy. leaden. I'm still not sure whether it saves one from nausea, or talks one out of complaining about nausea. like I had retained my musculature, but the rest of my body had become The Hulk, and I wasn't up to the task of moving an arm or leg of the big guy.
not a trace, however, of anything even my chemo savvy body would identify as nausea.
and compared to the anti-emetics of months past...short, small, and quickly past.
I slept some in the two hour periods between exams. been a little weak, wobbly. I don't believe any more anti nausea stuff is scheduled...they were satisfied I had some Zofran at home. next day 1, I'm going to ask if any substitute for the ativan will do in any way...I was not what anyone would call Comfortably Numb.
so 5pm, last labs in the infusion center...7pm labs were to come from the after hours folks aways away. I guess the study has some wording like "10 to 12 hours" as the observation time...they just assumed I'd go for the 10.
but...no blood from the port.
Nicole felt the needle was clogged up from the day's use. she determined to restick me. not exactly a reward for good behavior, but no dealbreaker.
but she set about removing the sticky saran wrap that had protected the needle in the port.
I have not suffered. I have complained. but I have not suffered. it is fully possible I have not suffered in my lifetime. I've made all of the faces on the pain chart from time to time...sometimes while attempting "Crossroads" by Eric Clapton and Cream.
it's tempting to think one has suffered, one is suffering. I know better.
gee, said Nicole, this new protector stuff sure is sticky!
lisa said there was half inch long chest hairs all along its form when it was off. no one was merciless.
but that was the worst experience of my treatment so far. I (who have no real scale to judge) would call it a 4 to 5. legs in the air, pain sounds. and it was harder for lisa to watch it than me to go through it.
I can hear the masses of the world's women hissing at me, see?
lisa said, at least when you're waxed, the hairs are snipped as short as can be.
fashion mavens of the world...don't do it for my sake. I mean, I grew up in the 60's, if that isn't an oxymoron, and I have good associations with a certain amount of naturalness. and a certain amount of distaste for lightning bolt topiary and the like.
but...no difference it could ever make to any man anywhere in the world would lead me to prescribe enduring anything like I did yesterday. I had surrendered about preserving my chest hair. now I ultra double super surrender. take my legs, too, if it will help.
those selfless nurses, without curses, stayed til 7pm. when the new needle didn't work either, they injected some "cath flow" much as Lorie at Dr. Elias' office had done. when that was unimpressive, after half an hour, a night duty nurse suggested just running a bag of saline through it (into me)...fluids were going in, but nothing coming out.
I was skeptical. but they got their 7pm labs, staying probably 90 minutes late.
going in this morning at 10 for one short round of labs. hmm.
all thankfully, wonderfully, predictibly, redundantly normal.
I don't have iron poor blood. I have blood poor blood. this is worse than an IRS audit.
no one knew if Nutlin-3 is using the Gleevec model or not. I have another long day tuesday, and will see Dr. Gore then...she'll know.
I did find out that, contrary to what I thought, the finding of the needle biopsy that I had the P-53 "wild" gene meant that I had the version of the gene found in the wild; the common, non-mutated one.
I may suspend my trying to weave together theories about my treatment, and consider learning about it instead.
but...let the imagining begin.
am I more pain free today? does the tumor look less angry? is it working in minutes?
the article in the last blog entry said that 31 out of 31 people in the first Gleevec trial improved.
now that is a good day at Baskin- Robbins, however you scoop it.
(did you notice the "31" contained in the letters "BR"? someone there did, and it sure took me awhile...)
did you ever read Kurt Vonnegut? I did, long after I had given up reading for music. cynical. pessimistic, but outside of the box. chewy, crunchy, tasty ideas.
I remember it was in the preface to Welcome to the Monkey House that he stated the two predominant themes in his work.
I did actually try to google the preface...I often like to give the Discerning Reader a quote instead of a paraphrase. it didn't yield in the time I budgeted for it. sorry.
one theme was something he felt after the birth of his first child...
"here I am, cleaning shit off of practically everything"
( I would add, "but I'm not bitter...")
the second was taken from the last words of his dying sister : "No pain."
I'll sign my name to that petition.
needle biopsy the 8th, to look for cellular change. (hope they have Verizon...)
C-T scan July 14th, to look for tumor change. Kathy said, Bastille Day!
it was, oddly enough, the first thing I thought of too. a fine day for a revolution in cancer treatment. I somehow associated it with Brian's song, "(Bas)Steel on Stone", which he will sing in a cheesy French accent with no provocation, and despite all objection.
let the imagining begin. Nutlin-3 "works in minutes". does my shoulder hurt a little less today than it has been hurting?
Scott, just found you via Dave Bell. Interestingly was just talking about Blue Mountain the day prior. Find me here if you want to be in touch: http://www.dartfrogmedia.com/photography. I'll try not to make you minister to my feelings about all this, but it does hurt to hear of your situation. Six strings of separation. Or connection. Peace, old friend and teacher.
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