Two months out

It has been a few days past two months since my last injection. I am doing better, but by no means all better. I keep using the number 75% in conversation, but I wonder if I am being optimistic. I can do a full day in the studio, but not the whole week. And I often melt down at the end of the day.

GC had a major medical scenario involving heart surgery; emailing this week she said it took her three years to fully recover. I’m starting to realize that my initial thoughts of 6 months or so, are really radically out of line for a “full recovery.” And that the last 25% or 20% or 5% will continue to remain elusive for a long time.

I look a lot better. I got my hair cut quite short, am wearing glasses, and haven’t had to wear the ice vest for nearly a month (or at least my memory seems to think so.)

But my memory is faulty. Very faulty. There is a lot I can’t remember from this year. That was what my first blog post was about. How I had already forgotten so much. I think part of it is a coping mechanism. If I really remembered every detail and dwelled on every hard time I would never make it past the illness. But everyone around me remembers the whole thing; all the details; everything I have unconsciously blocked out as a survival tactic. This is hard when I don’t remember how bad it was, or how helpless I was, or how much help I needed, and how much others helped me. I mean I *know* this, but I don’t actually *remember* the moments.

If I think hard I can remember not being able to get out of bed without help, not being able to put on my socks or shoes, not being able to walk more than a block or two, not being able to wash the dishes because my hands were so raw, getting gloves to wash the dishes, then dropping and breaking so many bowls and plates that I had to stop even trying. My heart would jump everytime I dropped a plate (and caught it), and would fall everytime i broke one.

A lot of the physical symptoms are receding. My lesions on my legs are almost gone; they are gray and fading. My finger and toe nails are still a total mess, but they are slightly less of a mess than they were two months ago. I still can’t use them properly, but at least they are not completely shredding. My infected bug bite on my left ankle is still healing (four months later) but seems to be making progress. And my tongue can take just about anything but properly spicy food.

I still have dysesthesia, though it manifests in much less severe ways. I get it on a daily basis, but can mostly control it through concentration. It is mostly discomforting, as opposed to the debilitating effects before. Last week I was in San Francisco, and walked through the intersection where I had my lowest moment, and I felt fine. I saw all the same street corners. I pointed out to O where I huddled, where I ran around the corner, which bus stop I ended up at. And none of it set off any side effects. I think a month ago it would have. I think I *am* getting better. Just slowly

I have finally adjusted to seeing through my glasses, and the short haircut feels natural to me. The thin, soft, whispy hair is very strange, but becoming more normal all the time. My cleaning lady brought me some Doo Gro, which is a whole bunch of different plant and seed oils that are supposed to increase hair thickness. I like the smell, so I put it in my hair, but I don’t have much hope it will really work. I am accepting this as one of the permanent changes. Much like the glasses. These are the bad permanent changes. But there are also good ones.

One of the side effects that took the longest to manifest (which logically means it will take the longest to receed) are some really strange sleep talking and sleep thrashing patterns. I seem to talk a lot in my sleep, narrating my dreams. Which are alternately incoherent, and or full of livid, violent, and erotic details that are supposed to stay in my unconscious, or pre-conscious, or whatever. I apparently try to talk to O about these things, and she asks me questions, and I respond. I remember none of this. None. I am completely on autopilot/unconscious. Combine that with tossing and turning and kicking and thrashing. All told, between the talking, the things I seem to say (which are ambiguous as to whom I am talking to, and quite dark as the unconscious is wont to be), and the thrashing, I have kept O from a good night sleep. And given her bad dreams as a result. No fun.

My Psychiatrist has recommended a sleep study, which is nice, but I’m having trouble finding anywhere that takes my insurance. It seems to be a money maker of a procedure here in NYC. He also dropped a few of my medications a few mg. But the bottom line conclusion is that it is the IFN is still in my system and is working its way out. No Fun.

I went for my quarterly set of Drs appts, and I checked out fine. I get a set of scans as soon as I can make the appointment. My Oncologist said that 2 years is the most important number. At two years I get to scale back my visits and scans to twice a year, and my prognosis numbers get better. Most recurrance takes place around 18 months. He dated my start date as Feb 23rd, the date of diagnosis, so I’m at 19 months. Five more months and this becomes something I can start forgetting about (even though I already have.)

I go back to teaching in 4 weeks. I think I can handle it. I have a reduced load, though the commute is going to be hard. seven weeks is all I have to do. I can do it.

No News Is Good News

JS writes


No news (on melanarrative) is good news?


yep, no news is good news.

the only thing to report is that I did some really rough calculations, and figured out i probably took 3200 Tylenol last year, 4800 advil, and 3200 various other pills, supplements, etc. 164 injections of Inteferon. And two quarts of fish oil.

O marvels at my ability to swallow pills with no water. I guess after over 11,000 pills, you get used ot it.