Crimson Addict
A couple of days ago I went in for my weekly treatment at the Brown Cancer Center and got 3 units of blood and saw my new bone marrow doc.
Three units is a lot more than I usually get. I'd been getting one unit of blood per week, but my blood loss seems to be increasing a little, or at least it seems that way to me. The levels have always fluctuated, but lately it seems a two unit loss is getting pretty normal. I've been hovering around a six, and felt like crap, barely able to function. 4.5 is what I was at when I was first hospitalized.
I hobbled on in, slinging my own body around like a fleshy marionette. I get weighed and tested for blood pressure, then find my bed. I begin trying to get myself comfy and hook up my laptop for some entertainment. With a three unit transfusion, I'd be here a while. "Hello, Mr. Alvey!" nurses and workers would chime as I came in. It's like Cheers in here, except I think I'm stuck in Weekend at Bernie's instead.
I settle in, and the nurses hook up my access port to the machine. *beep-beep* That damn thing constantly beeps. I can hear it without my hearing aid, I hear that beep in some of my dreams. I am able to catch a minute or two of sleep in between the beeps. Sometime later, my bone marrow doctor arrives.
I had met him once briefly before, as he introduced himself to me last week. 'Dr. Hertz'. "He looks like Santa Claus," is one of the first things I thought, and he did, kinda. He seemed to be a very nice man, I could tell from the little gestures he made that was used to dealing with people in extreme states of distress. This was a good sign. He introduced himself again, and began asking me some basic questions....what kind of medications I was on, was I single or married, any kids, did I drink, etc.
Dr. Hertz went over the basics of my situation again. "You have something called red cell aplasma*. Your body doesn't make red blood cells anymore. You make everything else's, white blood cells, plasma, etc. It's a little unusual in that most people I've seen with this stop production of all blood, yours is just red blood cells."
*- I'm entirely uncertain if that's spelled correctly.
"Well that's good...I think," I said to myself.
"There is an antibody in your blood that is stopping the treatments we've been trying from working, so we have to find some way to stop that antibody," he continued. I remembered my hematologist saying that my body should already have destroyed that antibody, because my immune system is lessened because of the anti-immune drugs for my kidney transplant. But as always, I pay the price for being a very special snowflake. My body never has behaved like it should.
Dr. Hertz explained that the next treatment they would try would require me to stay in the hospital a few days, because of risk of reaction to it. He said it would take about four days. I asked if it was similar to the rituxin I'd tried last December, and he assured me it was a different drug treatment entirely. The rituxin didn't do diddly squat.
"And if this doesn't work, we'll see if I can get a bone marrow transplant, right?" I asked. "Well," he said, clearing his throat, "We'd have to see if you're a candidate for a bone marrow transplant." I think he was implying a transplant may not be the answer to this particular issue, but wasn't sure. I thanked him and he left.
"Well that's bad...I think," I said to myself.
I lay there, half asleep and soaking up blood. I read some Knights of the Dinner Table comics while waiting. It took about eight hours total to get everything transfused, it would have been shorter but I developed a fever after the second unit that brought everything to a grinding halt. I lay there panicking that they wouldn't give me my third unit. I started calculating how well I'd feel with only two. I wanted three, dammit. I laughed at one point, realizing that I was acting like an addict.
My friend Jen asked me last night over facebook how I was being so patient about this. I laughed for real on my other side of the computer screen. "Drugs. Lots of drugs," I told her. You can knock psychiatry all you want, but welbutrin and propanolol have been largely responsible for me not losing my shit.
The other reason I've been so patient is the depressing realization that even when I am 'cured', I really don't have anything to look forward to on the other side of this. My fancy career plans have been demolished. I'll still be living on a disability. Most of my life will quietly go back to the way it was before this entire mess with SSA started. I go back to being a nobody. I'll have to continue to quietly depend on others for my survival for the rest of my life.
Katie is talking about us moving to Indiana someday so she can be closer to her job. Now I'm having mild freak-outs over the SSA screwing with me again because I crossed a state line*. And even that's screwed up because IN is right across the frickin' river. I envy folks who can just hop in their car and go traveling. Or take a trip to a foreign land to experience life every once in a while. God, I envy them.
*- I know SSA is a federal thing, but it also is sort-a a state thing. And I'm going to pop up as a new file and I'm certain someone during a budget cut is going to go 'oooh! newbie!'. Look, I have a nervous tic when it comes to the SSA, don't judge me.
After I was given a shot of steroids my fever went down and the nurse went to go get my third pint o' blood. I saw Dr. Hertz again shortly afterwards, his second visit today. He explained that there was another treatment available for me to try, some pills to take for four weeks that might work. He told me I could chose which treatment to try, and if one didn't work we could go back to the other. I picked the 4-day hospital stay again because I thought it'd be quicker, and I was still thinking about the rituxin. He assured me again that the pills weren't like rituxin, and that the set-up for the hospital stay would take a while, so it really wouldn't be any quicker.
"Fine, I'll try the pills first," I sighed.
He told me to ask for both he and my first Dr. next Tues when I go in to get my labs drawn, and we'd all talk about this, and decide what to do. So I guess we'll see then.
