We go back into the hospital tomorrow. We get packed up and ready tonight, and then hang around until they call because a bed has come free. No matter how many times I have made a bed free myself by happily if weakly leaving the cancer floor, I always get a little twinge that, when I am at my most impatient and pissing and moaning about there being no free beds, maybe I get a free bed because some poor bastard kicked off. And that would suck.
So it is back into the clink (is that spelled differently when using anachronistic pseudo-slang, as opposed to describing the sound an earring backing makes bouncing off a bathroom sink right before a human voice goes 'Dammit!'?). Where N gets one kind of break in that the damn place is crawling with professional take-care-of-cancer-patients-people who check me and recheck me and take stuff out of me and put stuff into me and in general seem to spend a lot of time trying to maintain my health, if not my feel-good-itude. Almost all of that gets split between me and N when we're on our own…and the split leans on her about 80-20. I mean, I've actually got the damn disease and I actually get the chemo, so I know I get some slack. But still, I'm not easy to live with when totally healthy (the incessant talking alone is on the short-list for new prohibitions from the Geneva Convention people) so tagging on all this Care and Feeding (see what I did there?) just must add something.
It goes like this--an incomplete list at best:
1-Flushing. I now have the PICC line attached to my inner right bicep, unnervingly disappearing into a hole in my flesh without so much as a single spurt of gore. We (meaning she because I just stare at the damn thing) do not have the expertise to change the dressing, so a home-nurse paid for by the union health insurance--previously mentioned--comes by once a week, or I can get lucky and time a clinic visit and have it done there. But flushing has to happen every day, and again, unless I'm lucky enough to be at clinic, that falls to N to do. It isn't a huge task--no stitches, no Metzenbaum Scissors (my favorite random Dr tool requested by Hawkeye and Co on MASH, or at least tied with "Rib-spreader", which really should have been a Judas Priest song)--but it must be done right, and N takes any task seriously and tries to do it well. She has to sterilize each cap and inject two different syringes of fluid into it in order. Which, as a standalone thing on a Fisher Price workbench or in 10th Grade Biology, may not seem like much. But keep in mind that the other end of the plastic thingy you are scrubbing with an alcohol swab or threading a syringe of blood thinner onto disappears the hell under somebody you care about's skin.
Take it out of context. Let's say your chore is to take the silverware out of the washer and put it back in the drawer. Fine.
Now remove the image of the silverware basket in the machine and replace it with an oddly non-bloody door-flap in your mom's back, that exposes a CD-sized area on either side of her living, twitching, easily damaged spine, which has all your family's forks nestled tightly around it.
Go ahead, whip through that job because you don't wanna miss fucking Donahue.
2-Drink (water). I have Leukemia (I may have mentioned that). For a while, in remission, I could say (was supposed to say and clung to saying) that I was fighting Leukemia, or cancer, or whatever the hell it's called (what is it? Wednesday? I think it's "A Bone and Blood Cancer" today.) That was because I was in remission. I'm officially not again now. Not yet, anyway.
The latest biopsy results were basically good, but a little screwy. There are three levels of depth to the biopsy: easy, middle, and deep. The first, least observant level came back clear. The third, deepest, most advanced method of detection also said I was clear. But the second, pretty kinda-deep level in the middle said I still had leukemic cells.
Which isn't so horrid if it turns out to be true. I have been CNS-clear ever since they first dribbled paint thinner into my brain and spinal column, so that's all good.
And the assumed course of remission for transplant was always two of these lovely Hyper CVAD stays--the second of which starts in mere hours. So I don't think it was a given that the first bout would totally clear me.
But it's a bit odd to get the results I got, and my Dr said so.
It's like ex-president Bush, my high school Spanish teacher Mr. Binford, and the Tech critic for the Times are all staring at an iphone.
1-Bush tries to bite it, shakes it a little, grunts some, then drops it and leaves to follow the scent of cheezits he's picked up.
2-The Tech Critic for the Times checks it out thoroughly, up and down, runs a few apps, takes over someone's home wifi and buys some Keds for his daughter, and pronounces it a Good Thing, then he leaves.
3-Mr. Binford, an intelligent guy with a lovely wife and a great deal of capacity for thought, stays there, padding sliders and buttons, opening and closing apps and widgets, clicking the headphone fast-forward stick-button thingy. And he won't leave, and he keeps saying "Nope, something's not right. Can't put my finger on it, but, nah, I'm not sold."
So my Dr is trying to talk to the Dr in Houston who is coordinating this treatment so I'll be on the correct timing and track when transplant hopefully comes. And he's talking to the high-end-deep scan tech to make sure his All Clear is on the up and up. And he's talking to the mid-level-deep-ish scan tech, to make sure there wasn't some, I don't know, cream cheese or 925 silver in the sample.
Meanwhile, I have Leukemia (I may have mentioned that). And my body is very, very, disappointed in me. Because, just for the simple act of trying to kill me from within by turning some of my own cells against me, I insist on continuously dumping poison and Drano and mind-eraseing bags of this, and pancreas-exploding bags of that, into it. So my body has decided 'Screw you, Chumpstein, I'm only putting in half the effort from here on out.' So I am still down ten pounds, hovering around 148 no matter how much movie popcorn and roast-beef-and-cheese sandwiches with soup chasers and bowls of mini-wheats festooned with bananas (please celebrate briefly with me that I got to a place where in context 'festooned' was actually the best word and I got to use it) and soda and apples and raisins and peanuts and hummus and cheese and salami and milkshakes from everywhere that sells them I throw at it. And my hemoglobin has stayed low--which it always does but I think it has stayed lower, longer--and so I spend a good portion of each day kinda panting at the end of something deeply strenuous like answering the phone.
And one of the best things to help all of this, from leukemia on down to fatigue, is water. I should be drinking water all the time. And often I do. But N still needs to make sure. Watch over me like I'm some errant toddler ('errant' is also a fantastic word; tastes like a couple of bitter but perfect berries) who doesn't remember his simple tasks. She will simply lift the empty water bottle out from in front of me, refill it, and put it back, and I'll gaze out over it and watch DVR'd motocross for another twenty minutes. Then she asks "Are you drinking?" from the next room, and I'll say 'yeah' as I reach for the bottle and take my first swig in far too long. I get really upset when I'm bummed or feeling weak or just letting the situation get to me, and when she asks "Are you drinking" I bawl out some a-hole response about of course I'm drinking, leave me be, I'm an adult, etc blah etc. I only get to do that when I have been drinking. And I don't get to vent my indignation like some muscle-less big baby too often, because I'm not keeping up with the H2O like I used to. So that stays on N's checklist.
3: Reading all the, what are they called? facts and stuff. There is a lot of literature out there about leukemia in general and leukemia in specific and how there aren't many schmucks my age who get the leukemia I got (1200 a year or so, not sure if that's US or everywhere) or what the odds are of a 10 for 10 match or what the chances are of a hybrid-cord-half match instead or how many fun, normal, regular, totally non-threatening things I'll be prohibited from doing for long stretches of time (gardening: one year) if the transplant works or what the new gene therapy they may give me can also do or what the longer-term consequences of the Ara-C blackout party I had with myself (I'm still not sure if nobody else was invited, or if nobody else came) and on and on.
I have little bits of this info that, as an actor, I have picked up aurally from N or Drs or others and tucked away. I used most of them up in the previous paragraph, I think. Oh: the things on the ends of your shoelaces are called Aglets: there; I'm shot.
N reads all of it, pursues all of it. Hears me mention a tightness across my cheeks and goes online: Cytoxan-face, which my stepfather confirms. Hears a nurse mention a syndrome that might limit Magnesium intake, and goes online to look into it and learns instead that soaking my feet in Epsom Salts (or maybe a whole bath, I forget…see!?) will up my Mag levels. Hears the NP say exercise raises the hemoglobin and actually encourages me to go running--not yet this time, because I can't speed up to make a crosswalk light without feeling like I'm wearing a new backpack full of old bricks, but before that.
All's I'm saying is: I'm high maintenance, and have been on and off for almost exactly three years.
Speaking of which: Monday was tax day and also what I originally referenced as my Diagnosis Day, three years ago. Wheeee!
I'm still here, dagnabbit.
N and I had a nice meal out and saw a movie and it has been warm in the city the past few days.
I'm drinking, I have not packed yet for the hospital tomorrow but I will soon. I will probably eat a post-movie-popcorn snack in a bit. I am trying somewhat hard to not think about the five-day chemo run that starts soon, and trying really hard to not just chew my nails and worry about them finding a match.
Mainly because once my platelets drop I can't chew my nails, they have very little caloric value to help with my weight-gain, and they are probably about half chemo anyway.
And, maybe most important: you can't get bugged or bogged by that which you cannot change.
We go into the hospital tomorrow. Left foot, right foot: repeat.
