Tuesday, February 26, 2013

from writers' group 2/26/13

 I have decided to live. I have decided to live over and over since I was just a little thing, sick with everything and missing a total of two years of school. I have decided to live when chicken pox tried to take me down and the battle raged for months. A mysterious illness socked me in bed for three months of my fourteenth year, kept me from eating, drinking, walking, waking. I took my fluids through an IV. My big brother watched me try to lift my head and I saw his eyes well up like he was afraid I wouldn't make it to fifteen. But I did. I decided to live. I could have let go and slip comfortably into sleep forever, but what a ridiculous option. I decided to live.

 Every major illness and injury has tried to steal my breath and my blood, but I refuse to be compromised. Massive blood loss post-surgery couldn't take me down. Bacteria pneumonia turned me purple but I wouldn't be bested. All these scrimmages have just been practice for the big show. I'm a feather-weight prize fighter; I've got a flawless bout record. It's all led up to the championship match: me vs. my failing bone marrow and let me tell you there is no other outcome than my absolute victory because

I have decided to live.

Friday, February 15, 2013

things are happening.

My transplant doctor has faxed Medicaid a letter recommending I be treated in Seattle. This is a necessary step for me to have my coverage moved temporarily while I am being seen at the Hutch. This is (big picture) a good thing. Let's take a moment to celebrate a burst of activity in the process.

There's a funny scene on Parks and Recreation in the second-season episode where Ann (Rashida Jones) throws a Halloween party that starts out pathetically boring. Tom (Aziz Ansari) sees all the low-key guests glumly milling about the kitchen and tells Ann "they all look like someone just told them they have to have a bone marrow transplant!" The humor is in the truth. I'm pleased to have some momentum building because the stagnation and endless surgeries and acid burnings and laser oblations are making me feel a little unhinged. I am not pleased that this momentum is building to a crescendo of pain, hair loss, general horrible feeling, and potential fatality. I don't handle this internal conflict well, except to partially compartmentalize both feelings enough to let the happy one out in most company.

I found out all-around good news, though. Don't let my earlier ennui fool you. I had some genetic testing done to determine if my chromosomal abnormalities are hereditary or acquired and they are not hereditary. Wonderful! This means my liver and lungs should not be at a higher risk of GVH issues or tumors later. More importantly, it means T is not likely to have the genetic problem and does not have to screen for liver- and lung cancers once a year and can be my donor. I don't want anyone else's marrow but T's. It just seems right.

R and I signed our Advanced Directive documents this week, making us each other's advocates when the other is incapacitated. It's like being almost married. Like my almost cancer, but awesome. It was necessary to do because the transplant is actually coming into view, but it feels surprisingly lovely to have made that commitment to one-another.

sometimes life is difficult.

I have been living shoulder-deep in mud in for over a year. Most of the time it is cool, just a hair less than room temperature and I slog about and accomplish small, dull victories. I pat myself on the back when I get up, put on a cute outfit and walk five blocks to knit and drink coffee. I lap up my own applause when I clean a room of the apartment, write for an hour, and run an errand all in one day. There are a lot of days where the pain is pushing too far past the medication or I can't seem to wake up enough to move until almost noon so I can't get out of bed at a reasonable time, but what is there to get up for, really? The weight of being in limbo and the shattering of my illusion that limbo would last are dragging me down. 

The depression that settles in when you have become mostly homebound by illness is like a fine dust that coats every square inch of everything around you. When the only treatment could kill you and is a mirage you can swear is getting closer, it is a grease mist that settles onto the dust and makes all of life grimy. This is especially true when you are alone all day. I try to reach out and make the social time happen, but it's hard through the grime and the tired and the "breakthrough pain" and the waking up sometimes and feeling like the whole corporeal consciousness thing is a stupid waste on this sort of existence. It's hard to want it. The not wanting the social time sucks because it's about being depressed, being scared, and not wanting to have to worry if I don't feel much like talking; it has nothing to do with wanting to connect. That's all I want. I don't know how to get it through all the grime except to force myself up and out to fill my time with more than doctors' appointments and errands. But it's hard to talk about being angry and scared at the same time except to say it's like a high-pressure front and a low-pressure front settling down in disputed territory. As each system approaches, the drizzle turns to endless-seeming rain that keeps you from going out without galoshes until they overlap and I'm downstairs to get a midnight piece of jerky and suddenly hucking things around the kitchen and sitting on the floor slamming myself into the wall. That specific event only happened once but it was recent and scary so I'm going to individual counseling.