The Dr. is taking me off of the IFN for a week, so my Immune system can rebound.
I guess taking one week off pre-emptively is better than getting sick and needing three weeks to recover.
The Dr. is taking me off of the IFN for a week, so my Immune system can rebound.
I guess taking one week off pre-emptively is better than getting sick and needing three weeks to recover.
So I went to all my doctors this week.
I’ll post about my hypnotherapist in a bit, but I’ll just say that it is great. It is really helping. I’ll explain more in a followup post.
My Oncological Psychiatrist said that the “seeing things” was probably IFN related. He upped my Lexapro and Klonopin to take the edge off of my anxiety and help with the pins and needles.
My Oncologist says that unless I am having “night tremors” the visual abberations are not anything to worry about. He says that the lesions and ulcers and strange skin textures are all “to be expected.” He said that the pins and needles are a new side effect, but that none of it surprises him. And, he said that “unless you skin is falling off, I don’t see any reason to modify your treatment.” He was quite concerned about depression, though. He asked a lot about that. He said that it starts to hit four months in, and gets worse through months 7 and 8. By the 9th month, it gets better: either you have adjusted, or you see the light at the end of the tunnel, or something.
My psychologist says I’m doing well
And my dermatologist said that all the skin stuff, and mouth lesions stuff, are not growths (e.g. cancer, or warts) but are something called Acral Erythema. As far as I understood, Acral Erythema is a skin reaction to a lowering of blood supply at the furthest extremities. One of the things that the IFN does is reduce blood flow to the capilaries, hence the problems around my hands, ankles, and my tongue. He gave me some cortizone cream, which has not seemed to do anything yet.
I made it two laps around the park today. It was maybe 60 degrees out. By the time I was done w/ the ride it was in the low 50’s. Everyone was wearing their fall kit, with tights and long sleeve jerseys.
I decided to wear my tank-top summer jersey. Which I unzipped halfway into the first lap. I went slow, and managed to avoid the pins and needles of the last ride. I got some pins and needles going up the hill for the first time, but by that point, the sun had tucked behind the trees, and I was getting some cooler air.
I even made it a second lap. I’ll try for three tomorrow.
The key is wearing almost nothing, riding near dusk, stripping off layers as i go, and going slow. I can do this.
Apparently doctors regularly proscribe drugs for their placebo effect. The nytimes has an article detailing the practice.
I myself wholeheartedly believe in the effect. When I was put on a .75 mg dose of Klonopin, it calmed me down immediately. It actually calmed me down even before I got my prescription filled. Later, as I was recounding the medications I was on to a nurse, she said “that’s not doing anything! that’s not enough to be effective.” and i said “Shush! The placebo effect is working just fine.”
My white blood cells are down to 2.3. Acceptable range is 3.5-9.5. The doctor’s PA is going to speak to him and let me know what they want to do about it.
In the mean time, that might explain why I keep getting ulcers in my mouth. My tongue has been feeling funny, and i looked at it in the mirror, and sure enough, its got funny spots, splotches, cracks, and bumps on it. These don’t hurt as bad as the ulcers on the gums.
A couple of days ago I woke up early and rode my bike around the park. It was really cold; it was 50 degrees, and had been in the 70’s for the week previous. So I was cold at first, though nothing new. But halfway around the loop my pins and needles came on quickly and really strongly. Normally it only kicks in at the end of the first lap, and it goes away.
I pulled over to the side of the road. Took off my long sleeve jersey, and pulled up my undershirt. I almost took it off too. I waited for a bit to cool down. Me, standing in spandex biking shorts and a white t-shirt pulled up to my armpits. After a few minutes I realized I wasn’t going to get much cooler. I rode back in the t-shirt, with that awful pins and needles feeling, just trying to make it home.
tomorrow i’m going to go see a psychologist who specializes in visualization, with a focus on hypnosis and self-hypnosis. We are going to work on techniques for visualizing the freezing air conditioned server room at the studio, where I go when I overheat.
The idea of hypnosis freaks me out a bit, but the idea of what we are going to work on is fundamentally sound. I have started to try to think about that room when the overheating/pins and needles feeling is coming on, and it helps moderate the severity. I can’t quite make it *stop* right then and there, but I can make it better. So better visualization skills should help.
in other news my mouth is raw again. not as bad as the previous three(?) times, but the cycle feels like it is still waxing, and will get worse before it gets better.
I have been noticing that I have been not-exactly-seeing-things, but having weird visual perception ticks. I see movement where there isn’t anything moving. Its like I am seeing cockroaches, or bugs, or something, but then i freeze my vision, and concentrate, and they’re not there. Objects and shadows seem to be in motion. This is recent — last two to three weeks, and I only really articulated it as a pattern in the last few days. I remember my psychiatrist asking me about seeing things & hallucinations in one of our initial meetings about the drugs. So I am going to head up to Columbia and we’re going to talk about it…
man… hallucinations! i guess that is the proper term for not-exactly-seeing-things. i never thought i would have hallucinations, as i stay far away from those kind of drugs…