Wednesday, May 30, 2007

Earthrise from the dark side of the moon.

Strange journeys, and slow. Occasionally a random tinkly arpeggio penetrates the thick barrier of wet felt, sweater pill, and static electricity that surrounds my head, cakes my eardrums, and turns my brain into the kind of crumbly sludge that not even a six year old would want to sled in. I look up to identify its source, and find that it is coming from a little yellow fish. There must be a camera trained on a fish tank somewhere, and when a DVD ends, this is where the tuner defaults. Was somebody watching a movie?

I have been in the hospital for, oh, about four nights I guess? But I certainly can’t figure out why everyone else seems so sure about it. After two sleepless nights at the hotel of belly pain, one of them involving vomissements and copious libations of sweat onto my pillow and sheets, it was time to stop pretending that I was going to make it through this without being hospitalized.

While I was already on quite incredible numbers of prophylactic anti-badstuff, when I got in they put me on even more. So now I am on vancomycin, fluconazole, levaquin, acyclovir, meropenem, cephalexin, cllindamycin skin cream, and chlorhexidine mouthwash! If you don’t immediately have a reaction to those two words next to each other, don’t worry about it. And I STILL have had a fever for days now. Everything’s just out of whack, and regaining its equilibrium is slow. They’ve even got me on IV nutrition, which is a trip. I can feel my guts going “wait a minute, no, no, no, you’ve got it ALL wrong, this stuff is supposed to be on THAT side!” It is easy to point to the drugs as causing the problem (“Hey Ahmet! All these American Hummers hangin around here, eh, you think they are really here lookin out for our best interest? Cause I ain’t so sure all of a sudden.”), but in my case, the peacekeepers really are the good guys, and are doing their job, and are going to win, with the help of the locals, who have started to rally. Tumor markers are in the normal range. My white counts are no longer dropping, and are expected to be back on their daily doubling curve by tomorrow. Platelet and red cell infusions have also sped the process, and further complicated filling out future health-related paperwork.

I was put on oxycodone as needed, and then a morpine drip, and then a morphine PCA (patient-controlled administration: the famous button!), and then a fentanyl PCA, which I had to ask them to turn down, because every time I would hit it I would wake up on another planet. I have been having great little nonsensical hallucinations, though. 10:00! Well, that’s when we cigar smoking three-piece-suit wearing railroad tycoons take our mid-morning nap, now isn’t it ol’chap? Off to the University of Chicago it is! Chicago or bust!

I don’t feel like I sleep much, but surely I do, as there is no other way to account for the time. Reading gets done at about a quarter of a page a day. Movies are best when they involve little dialogue, because there is nothing my brain does worse these days than decoding a bunch of people screaming at each other caught on poor recording equipment and played through tiny speakers on the other side of the room. The narcotics dictate a schedule of their own, and that combined with my recent severe drop in hearing acuity means that things are edgy – I sometimes have no warning when a nurse or my mother is going to do something, and I jump out of my skin in fright. I have to tell all my nurses and doctors that they have to speak slowly and clearly if then want to be understood, but they all forget anyway. I can’t really listen to my own music, because I fall asleep when I put it on, and then am awoken disorented and startled when the theme changes. Phone conversation is equally difficult, so I apologize if you’ve caught me ignoring your calls. I am not often in a communicative mental state, and even when I am, the effort to decode what you are saying and generate phrases of my own can literally put me out of breath. But this will all pass, and soon. And then I’ll do it again!

Tuesday, May 15, 2007


Even here, nobody knows what a “Hoosier” is, so we can all stop losing sleep over it.

After a couple of days here, I am slowly getting used to our sterile, corporate apartment suite. Lacking a garden and any hope of charm, it has a number of redeeming features: it is clean, functional, and close to the hospital. And it has free wi-fi.

My mother, father, and I flew in on Sunday, and began both moving in and making headway in terms of treatment. I went in to the hospital, my new home-away-from-home-away-from-home-away-from-home (where do I live?), to get the third of many Neupogen (stem cell growth factor) shots. I was pleasantly surprised that all of the nursing staff seemed already to know who I was, and were all ready for me the moment I walked in the door. It has now been three days, and this remains true. I have not yet waited a single second in a waiting room! This place seems extraordinarily well-organized, which helps me feel like coming all this way was a good decision.

I got my central line installed yesterday, so I am back to being bionic. The tubes enter my body just above my nipple and visibly snake up just under my skin, looping over the top of the clavicle and down into the subclavian vein, following it into the right atrium of my heart. I am still sore from the procedure, and haven’t yet figured out how I am going to take a shower without getting the whole business wet.

I spent most of today in the hospital, the first of many such days here. Today, they collected the stem cells which will reconstitute my immune system after the chemotherapy. I spent a fair amount of time grilling people about various aspects of the procedure (how the machine works, how many cells they are collecting, how they are stored, etc), and slept the rest of the time. I got a call from the head of the transplant unit in the evening, relaying the good news that they had collected just enough stem cells in today’s collection that I wouldn’t need to repeat the procedure tomorrow. While I was happy to hear that things were going better than planned, I was not comfortable with the numbers. I had been told by a number of people who are involved in stem cell transplants that it was important to have plenty of viable stem cells in order for things to turn out well, and I was concerned that merely having “sufficient” numbers of cells to transplant was running an unnecessary risk. While the transplant doctor insisted that he believed that we had collected enough cells, he said that there was no problem with me repeating the collection tomorrow if it allayed my concern, and that he would set it up. On the one hand I feel kind of presumptuous second-guessing what is probably the most highly qualified team in the world for this procedure, and on the other hand, I don’t want to mess around. I am playing for every fraction of a percentage point I can get here, and if people are willing to humor me, I see no reason not to err on the side of caution. My immune system has served me pretty well up until now, and I would like it back, please.

Thursday, May 3, 2007

hot beds and cold feet

I came down with a little cold just after coming back from the hospital last Wednesday, and by Sunday, I had developed a nearly-constant fever. A real problem in people like me whose white blood cell counts are low is that it is very difficult to tell whether fevers are due to a benign viral infection that will pass on its own, or due to a bacterial infection that could quickly get out of control. I had been told to call in if I spiked above 100.5, and after some stalling, I let myself be cajoled into heading back to the hospital Sunday night. The trip through the Emergency Department went smoothly, considering, and I was in my own room three hours later. The pleasure of having a single room was a little dampened by the knowledge that only the people who really need them get them.

I am getting really tired of hospitals. They aren’t nearly as interesting when wearing a grey face as they are wearing a white coat. A hospital is a terrible place to be when you are feeling bad. From Sunday night until Wednesday morning I was moved between four different rooms, and got poked with a needle at least eight times (that I can remember). Once the fever broke, became more of an exercise in patience and acceptance than anything else. I had to stay until I hadn’t had a fever for more than 24 hours, and my white blood cell count rose back to a safe level. In the meantime, they cultured my blood and urine looking for bacteria, and dripped me full of antibiotics just in case. Luckily, my white count bounced back fast, my fevers stopped on their own, and they didn’t find any evidence of infection, so the projected five day stay only ended up being around three.

I had known that it was a possibility that I would develop just such a “neutropenic fever”, but didn’t really think that it would happen, because I have gotten away with being immunocompromised before without any real problem. It was a disappointment to “lose” these days of freedom, but better safe than sorry at this point.

Back at home, I have new worries. The side effects of yet another dose of cisplatin are becoming apparent. For a few weeks now, my feet have been cold/tingling/numb/burning, as if they have been splashed through freezing puddles for hours. Instead of thawing, though, day by day they seem to become a little more like damp cobblestones and a little less like feet. My ears have started to scream again, and for the first time in a long time, I had to plug my ears when the dog barked to keep from wincing in pain. Most terrifying, though, is that my hands feel slow. Typing is awkward. Writing is sloppy. I remind myself that I regained much if not all of the hearing loss I experienced after the first cisplatin regimen, and that I am not getting any more of that stuff, no matter what happens (carboplatin apparently has fewer of these kind of side effects). Following a good review paper I found, I started taking vitamin E, alpha-lipoic acid, and acetyl carnitine, and am looking into glutathione, glutamine, and N-acetylcisteine. Time to get back to the acupuncturist, too.

In the meantime, I am very happy to be home, and no longer immunocompromised. I still have a cold, and am still feeling pretty beat down, but I am getting over it, and looking forward to enjoying the next ten days as much as I can.