back in my own bed

I just woke up from a good night’s sleep. I’m still achy and sick to my stomach. But I slept in my own bed. And the bed felt huge, even with O next to me.

The last two nights we spent upstate producing and installing her solo show. The college has some old house that functions as a visiting scholars and faculty ‘guest house.’ I have stayed in these kinds of houses at small New England colleges before. Usually they are spartan, but comfortable. Not this time.

Where to begin…

The bed. The bed was a single bed, that sagged way down in the middle. Single. As in: not twin. We could not lie on our backs at the same time, or our shoulders would push one of us out of the bed.

Sleeping on the couch. Where I moved both nights. But without any blanket or sheet. And the couch was just too short to actually stretch out on. Why do they make big couches that are too small for people to sleep on.

The sheets. The bottom sheet inexplicably only covered 75% of the bed. So our lower legs and feet were resting against the old mattress. This was probably the weirdest part.

The noise. The college rents(?) the back part of the house to a family. A very loud family, with a fighting husband and wife, and a crying kid. At first we thought it was the house next door, but then realized it was coming from behind the house through the paper thin walls. We left the city, went ot the country, and it was much louder than my apartment.

The smell. This one took a while to place. The whole house smelled almost exactly like my Interferon. When I inject, I use alcohol wipes, and so the smell could have been that. But there is a distinct smell from the whole injection process. And the house smelled like it.

The food poisoning. This one’s not the house’s fault. I ate something that didn’t sit well. I woke up in the middle of the night with intense stomach/intestinal pain. Was burping up, but couldn’t puke. Spent long enough on the crapper that I might have fallen asleep (unclear). All I got were a little pile of raisinettes. I wiped my ass, and the tissue was covered in blood. I had been really upset by the intense pain (worried it was an appendix, or something) but seeing a handful of bloody toilet paper set me over the edge. 2am, and I was hysterical. Somehow (drugs, O, exhaustion) I fell asleep. I slept until 130 the next afternoon. Felt sick all day.

Add to that a bunch of bloody noses.

I am just now eating some oatmeal. The first really hearty meal I have taken with a real hunger.

Down to 15

I think I am starting the countdown a bit too early. I shouldn’t really start counting like this until it is single digits. Two more weeks, and it is 75%.

My body is really feeling it these days. Very tired. My fingernails are mostly gone. I’m really achy. Headaches all the time. My feet are starting to hurt.

Starting to ride my bicycle again. I can make it two laps around the park (6.5 miles). Each time gets a little easier.

I can’t wait for this to be over.

Losing things

I left my camera in Illinois. Thankfully the housekeeping found it, and the hotel clerk is sending it to me. This has been a year of losing things: 4 hats (My two favs, and then I bought 2 new ones, and lost those two). Two pair of gloves (nice bike riding gloves, really nice ones). One really really nice bike riding jacket; I dropped it on the street I think. Oh, forgetfulness

Back from the road

36 weeks done. I have 16 weeks left. 70% done. My mom is coming tmrw, which will distract me for a week. I’ll be down to 15, the last 3 or 4 of which will be in Portland. In my rationalization and fantasy, that makes it only 12 weeks left of solo, non-distracted injection. Of course this is a fantasy: I’m still months away, but it feels closer. I think that after week 39 (75%) I will feel a solid “last lap” feeling.

I was on the road for the last week, giving lectures with my studio mates. I did a lot better than the last time I attempted this in November. That said, this will be the last time I fly before I go home to Portland in July to finish my treatment. I did really well, but it was hard enough.

Some things have changed over the last few weeks that I have neglected to report. Most importantly, I’ve gone off the Atarax, which was controlling my dysesthesia, but also making me stoned, irritable, and sans-libido. I was in at my dermatologists, and he said “well, if you really think it is the Atarax, why not stop for a few days; you should feel the effects immediately — its not something that builds up in your blood stream. If the dysesthesia is too strong, you go back on it.”

Amazingly, I was fine. The three months on the Atarax had got me adjusted to knowing when and where i was most likely to experience an attack, and to avoid those situations, and controlling the reaction through meditation when it was unavoidable. So I have had to concentrate harder at times, but I have been rewarded with a better mood, a lot more energy, and a libido that is still suppressed (from the IFN) but a lot stronger than before.

I had several doctors appointments about 4 weeks ago. My CT scans are clean. My Oncologist continues to tell me I am doing better than most any of his patients. It is small relief, considering this experience feels so bad, but I wonder about those patients who are doing ‘worse’ than most of his patients.

The day I was in I had to wait 4.5 hours to see the doctor. I’ve gotten really good at being patient in doctors offices. I was told the doctor was running late when I signed in, and after about 45 minutes I checked in to see whether we were talking a few more minutes, or a few more hours. Mostly I wanted to know whether to pull out the laptop and start working. I was told that it was most definitely a laptop day.

The way the nurse phrased it was “There are some very sick patients here today.” She said it under her breath, so as to not let it spread too far beyond our little micro-conversation-sphere. I found out that one patient had to be admitted before I arrived at 10am, and several other patients were admitted during the 4.5 hours I was waiting. Apparently the doctor was away at a conference, and these older patients didn’t go to the ER when they should have, as their skin grafts became infected, or they got really sick with a pneumonia, or what have you.

Knowing that there are patients in the office who are likely dying gave me an incredible patience with waiting. I could have sat there for the whole day, patient and content, meditating on the wellbeing of those admitted patients, and grateful that I am strong enough to wait with patience.

One of the interesting things the doctor told me is that along with the reduction in physical changes that comes with month 10 (i’m still in the physical changes zone, but last month was much worse) comes an increase in anxiety and psychological effects. So months 6-9 are the hardest physically (all kinds of body falling apart.) But months 10-12 feature an crescendo of anxiety that doesn’t get better until after the last injection, and then, two or three days later, it disappears. Invariably, the anxiety vanishes within a week of the last injection.

I doubt that all the physical symptoms will go away quite so fast (my fingernails continue to disintegrate, i have Reiter’s lesions all over my legs) but it is nice to know that a good part of the mental stuff will go away fairly quickly.