Off all drugs (some withrawal)

Today is the second full day off of Klonopin. I have felt the effects both today and yesterday, but both days have been just a little bit easier than last week’s transition from twice a day to just evenings. Nausea and headaches.

One key difference: this time it seems to be getting worse over time, rather than getting better. Maybe the discomfort will get worse until a point when my body gets over the withdrawal and then I will feel increasingly better. This is unlike last week, when I was not removing the drug entirely, but rather changing the period in which I was taking it; once my body adjusted to taking the drug with twice the duration between doses, the disomfort relented.

Sleep Study Results: I Don’t Sleep Much!

I met with my Otolaryngologist who conducted the sleep study. Results are negative for restless leg syndrome, sleep apnia, sleep talking, and (most importantly) seizures. That said I know I talk in my sleep; maybe it was the lack of my dear nocturnal interlocutor with whom I imagine I am having conversations (and somethimes actually do…)

What *is* interesting is that I had unusually low levels of REM sleep, and correspondingly I woke up more frequently than “normal”. I woke up 5 to 6 times an hour. Waking up has a special meaning in this context: from what he explained this means I go from deeper (bur not necessaryily REM) sleep to a much lighter conscious or semiconscious state, usually for a matter of seconds.

He asked me repeatedly if I fell asleep during the day, as this level of non-REM sleep must result in high levels of fatigue and day sleeping.

He also explained that all three of my current psychoactive drugs (lexapro, klonopin, and seroquel) all inhibit REM sleep. He wants to repeat the study once I have titrated off these meds.

The doctor was quick to emphasize that it was hard to sleep in the lab setting, and this does have a tendency to skew results towards worse sleep.

The takeaway: I’m not sleeping well, and it is probably because of the meds. That said there may be/certainly are long term neurological and hormonal changes from the Interferon that are hopefully temporary.

The goal: continue titrating of these meds. Will restart that when I meet with my Oncololgical Psychiatrist in January.

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.

Infections and Fevers

I have this *nasty* infected bug bite on my ankle: i couldn’t walk on friday, so I had to have an emergency trip to dr to get it looked at & get antibiotics. Spent the weekend in bed. Finally walking by Monday night.

Nobody told me not to do my regular injection, which I delayed from Sunday to Monday. (and I did go to the dermatologist Monday, even though i slept through that appointment and arrived an hour late — at 3:30PM!). Apparently the two drugs *do not* like each other. Or maybe my immune system is just that fucked.

I spent the night with a blistering fever, yet shaking with cold tremors. O said she almost threw me in the shower I was so hot (and kept asking for more blankets.) It was the kind of shaking tremor that you just can’t control. It sucked. I couldn’t sleep. Was up for good at 530, but couldn’t really move. Just sitting on the couch trying to meditate some of it away. then at 10am, I fell asleep, and slept all day. today I got up, and felt a good deal better, but still not great. And it has taken me 48 hrs to write this, b/c i keep getting nauseous looking at the screen.

On top of all of that, I left my syringe out – it has to stay refrigerated. I only noticed it late the next day. Two injections worth down the drain, er… sharps container. That’s about $1500 worth of drugs. Good think my co-pay is only $25 for a four pack… It is the only time my insurance has really stood out. That and major surgeries. Everything else they screw me on.


The other good thing is that because I had to do one week of half dose after I got sick (a good six or eight months ago), I have enough extra that I will be able to do all of my injections. I won’t run out.

I have an infected ankle (but it is getting better)

I had a bug bite, or something, that seemed like it was getting worse. Two days ago, I had some pain walking in the morning, and I tried to lance it that evening, but only got some watery blood… no puss.

I lanced myself, but only got blood

And yesterday morning I woke up just after 8am from a dream in which I broke my ankle. And my ankle was throbbing in pain. I felt absolutely terrible. I got up to go to the bathroom and take some tylenol/advil and i could barely walk. really. i couldn’t put any weight on the bad ankle. I was a mess. When 9am hit, O called my dermatologist for me (I have an appointment on monday anyway…) and they told me my dr wasn’t in, but to just come in and one of the doctors would see me. We ended up taking a car in for an inspection.

When I got there, the doctor looked at O and me and joked “You two sure look like you’ve had a rough night.” Later, when she realized I was on IFN, and had been for a year, she apologized profusely. I told her its good to get a reality check sometimes…

She pushed on the welt/bite, and decided that there was no pustule (which I think I had already proven the night before.) Put some topical antibiotic on it. And gave me a prescription for antibiotics. I spent all of yesterday and most of today in bed with my foot elevated. I’m just now starting to feel a little bit better. I can walk around a bit without intense pain.

getting better

I think it got so bad overnight because I injected that night. That injection caused my immune system to temporarily dip even further below its already immunosuppressed state.

Lying in bed for the last two days is all too familiar. Last spring I spent 6 weeks lying in bed while recovering from my surgeries. It was a little offputting to realize I was back in the same place. Thought I knew it was only temporary.

Likewise, me telling the dermatologist that I had been on IFN for a year made me realize that, in fact, I started my interferon June 16, so in ten days, I actually will have been on the drug for a year.

Slept all day from an asskicking

I had a really bad ass kicking last night. fever and chills, and shaking, and everything. I haven’t had it that bad since the last time I had to pause my treatment… 6 or 7 months ago. O held me tight, but I still felt like I was freezing. and shaking. Slept in, got up, went back to sleep, got up, and went back to sleep. finally came to around 430, disoriented and sore. feel like i got run over by a train. spent.