Category: daily update

13 Candles

O made me a "last lap" prize. I have 13 weeks left, which is 1/4 of the total time. Its like running a mile, and coming into your last lap. I can see the finish. I can feel the finish. This all will be over soon. Three months doesn’t seem like a short time, but considering I’ve been doing this for 14 months, it is pretty doable.

last lap

last lap

Last Lap

Today I finished week 39, which leaves 13 weeks to go. I am 75% done. I am starting the last lap. 3/4 seems like a lot, and yet so far at the same time. But I think this part will move fast.

My oncologist has warned me of several things:

1. it was going to get harder through months 6-9, and then stay about the same, or maybe *feel* a little bit better for the last three months. It is unclear whether this is the body adapting on a physical basis, or a psychological basis, but it feels like it will be true.

2. he warned me that my anxiety would continue to increase as I approached the end of the treatment. That part would crescendo, only to disappear completely within two or three days of the last injection. I can say for sure that my anxiety is ramping up. So much that I am starting to notice the anxiety transform into paranoia. O has noticed it too. Little things, like misreading emails, or worrying too much about a botched communication as symbolic of some other relational disconnect. Plus I am still kind of irritable from the IFN and the Atarax (that I am taking every few days as needed), so I don’t have that much patience.

anyway, 13 weeks left. Three months. The bulk of the last month of which I will be in Portland. So two+ months. The weeks just go by.

Can’t Sleep

I’m in this really weird cycle where I alternate insomnia with narcolepsy. One night I’m out like a light, and sleep the whole night through, and am up before my alarm. Those mornings I am relatively full of energy.. Another night I toss and turn for hours before falling asleep, and then waking up late; sometimes i sleep in the whole day.

The strangest part is that doesn’t seem to correlate to my injection schedule. Last night I injected, but slept great and had good energy this morning. The Wednesday previous I spent the entire day in bed after a terrible night sleep.

To make it more complicated, my Dr took me of Ambien, as I was doing weird things in my sleep. The Ambien stuff. Pretty well documented at this point. So I’m scared to take it, in fear of what I will say in my sleep, do in my sleep, or not wake up when my sleep-talking wakes up O.

Two nights ago I gave up: I went on a full apartment search for Ambien. As I have not been taking it for several months O has expropriated my supply (as I suggested). But when I went looking for it, it wasn’t in any of the medicine cabinets, toiletry travel bags, or anything. I didn’t want to wake her up. I ended up taking more Klonopin and some Atarax and tossing and turning myself to sleep downstairs.

Sometime in the middle of the night, O came down to make sure I was okay. I was so disoriented, I couldn’t form complete sentences, and for an irrational/chemical reason was on the verge of tears. I tried to explain, but I only got out half sentences. And repeated those half sentences several times. Then stumbled off to the bathroom (nearly falling) and coming back and crashing out again. I worried that I freaked O out, but knew that she had seen this before from me. We talked about it in the morning, and I think I explained myself, in so much as my irrationality could be explained.

She showed me where she keeps her Ambien. On the bedstand, in a decorative metal jewelbox like container. It is both Vienna Seccessionist and Flower Power at the same time. And it is full of Ambien. I just took one. Well, half of one. Right before I started writing this.

I think I will go meditate for a few minutes, and try again

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.

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.