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.

I’m anxious about my last week on anxiety drugs

I was reading a New York Times article on depression, psychology and psychopharmacology, and I realized I had not taken my Klonopin… My headaches should have made it obvious, but I’m in a new routine this week. Today i the first day of the last week of my titration off of Klonopin.

I just took the quarter of a pill.

For most of my treatment, I was taking 3mgs per day. When I began this titration I was taking one 1mg pill twice a day. For the 8 weeks I dropped .25mg every week. I alternated the reduction from mornings and evenings. This week I am stopping taking the pill in the mornings. Just .25mg in the evenings. Next week I stop altogether. It will be the last major measurable hurdle in my post-treatment recovery. Of course, I will still not be 100% eight days from now, as my body is still healing and readjusting, though this healing is not as obvious or nearly as measurable.

Actually, if today’s headaches are any indicator, eight days from now I will probably be hurting pretty bad for a few days. Headaches all day. I ate and drank plenty of water today. I think it is just the drugs.

The last two months have been pretty hard body-chemistry-wise. Coming down off of the Lexapro (antidepressant) was rather easy. The first few days I felt distinct noticeable symptoms, but after that it was just 4 weeks of careful pill-chopping. The Klonopin has been entirely different: anxiety about having anxiety (LOL), feeling like I was feeling bad from the titration but not feeling bad enough to know for sure, and the exhausting discipline of sustaining the 2 month decrescendo. Nothing certain, nothing concrete, but definitely something was happening.

I am really really really looking forward to being done with the drugs. After 2+ years of this, though, I am somewhat anxious about being with out my anxiety meds. It is kind of ironic, and kind of funny, and really altogether predictable, but yet very real.

Over the last two months, my anxiety has ratcheted up a notch or two, as my dosage reduced. It seems only natural. I hope that it will diffuse once my body has completed the withdrawal process, but I worry that it will not do so fully. Or something like that.

I’m clear at two years, but my aunt died last night

I am officially clear at two years. I found out this past week. This morning I found out that my aunt passed away last night after four years fighting lung cancer. I was deeply relieved last week and deeply saddened today. And I will not be able to be at the funeral on Wednesday.

My full set of scans finally came back two weeks ago, and I just met with my oncologist.

He finally gave me some numbers: he has been unwilling to commit to numbers b/c they have so little data on my staging group. He said that the rate of reccurrance was anywhere from 15-30 pct during the first two years. (That range has changed several times, as it is a fairly broad range, and they don’t really have a handle on it.) More importantly, at two years, it now drops to 10% and after five years it drops to 5%.

10% is a nice number.

He said the scans looked really good. Which means very stable. nothing new. Everything has been consistent for two years. In particular he had been concerned about the nodules in my lungs which were ostensibly scars from my childhood pneumonia. He is now convinced that they are totally completely benign, as they have not changed *at all* in two years.  This is good.

I had a pretty rough time leading up to these kind-of high pressure scans. Scheduling the scans was an ordeal insurance-wise (they were reschedule once, and were almost cancelled the day of b/c the insurance papers had not come through.)

Then the New York Times published two articles on melanoma that appeared the night of my 2 year cancerversary. I had the scans done at that point, but had no results. They totally fucking freaked me out.

I was a wreck after i read the first one. and then the second one only made things worse. I was actually already on edge, as I waited for the results from my 2 year mark scans.

So I was already on edge, and then this article comes out talking about patients diagnosed with the same type of cancer as me, but who were diagnosed at extremely late stages, when they were more-or-less given weeks or a few months to live. A very few of them respond to this miracle drug, but after 6 months, they all relapse, and a large percentage die. Talk about fucking heartbreaking. I was doing my absolute best not to cry while reading the article. In retrospect, maybe I should have cried; maybe it would have released some tension? Who knows.

But I didn’t relapse. This is the major milestone. It is the first real number-changing mark. My numbers now go down from the vague 20 to 40 percent, to a solid 10 percent. Three more years, and I get to 5%. From what I understand, I will never get under that 5% — the percentages in a given year are very low now (whereas they were quite high in the first two years, especially in the months 12-18), but if you add that up over the rest of my life, it adds up. But it is a mark, and now I only have to see my doctors and get my scans at 6 month intervals, not 3 month intervals.

I’m off Seroquel!

I just had to ask O what the drug’s name was. Her response “have you already repressed it!?!?.” We both laughed.

I stop taking the Seroquel tonight. I was on a very small dose: 12.5mg, which is half of the smallest pill available. Doses range up to 400mg or 600mg, so it was very small. But it had its effects, and for me, it is a huge step towards moving on.

Remembering to take my drugs every morning and every evening is one of the central markers, and anxieties of my day. Once every three weeks or so I forget, and my day is usually pretty bad (whether I remember that I forgot, or not — it’s not psychological… I mean it is psychological… i mean… LOL)

I met with my psychiatrist today and he approved dropping the seroquel. He also wanted me to start titrating off of the Lexapro starting tomorrow morning. I’m going to Berlin the day after tomorrow, and I suggested that between the jet lag, and how dark Berlin is in the winter, I would probably be best coming off the Lexapro when I come back. He agreed.

So one down, one goes down when I get back from Berlin, and the other starts coming down when I am done with the second.

Hopefully I sleep well tonight (esp as the seroquel makes me very drowsy)

Diagnosis: sleepy

I went to my naturopath in Portland on Monday. Showed him the report from my sleep study and discussed all my continuing symptoms, and he made the conclusion O and I had already arrived at, but he put it so much more succinctly: I was sleepy.

I was sleepy, and not dreaming. So when I was talking garbage in the middle of the night it was because my regular dream cycle was not happening. And the dream cycle is where you empty your mental garbage can. I had not emptied my garbage can for months… Maybe more than a year. So all this garbage was overflowing and had to go somewhere: it comes out as sleeptalking in my all-too-light sleep cycle.

For five days now I have been on melatonin before bedtime. Still on klonopin and seroquel, so now I am on THREE sedatives. I sure am sleeping now. 11 hours a night. I guess this is what my body really needs right now.

It was my birthday on Tuesday. We all went out for a nice dinner. O had already given me presents in NYC because they were too fragile to make the trip to and from. I had a good time, but in my head my cancerversary has become a more important milestone for me right now. Maybe this will fade after I hit two years, maybe it will take five, but for now the end of February is where I am looking towards.

One of the things I was going to talk to my naturopath about was the transition from being a patient to not being a patient. I hate the “survivor” word. But regardless, my residual side effect symptoms have not gone away, nor has my energy come back in full, but I don’t know whether to wait for that to happen before I begin acting normal again, or whether to act normal as a way of helping break down the psychological barriers to that return. Of course it is a balance, and of course I am pushing myself too hard, but I thought it might have been useful to talk about. Maybe next time I am back here in April.

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.

Morning after Sleep Study

I had to go in for a sleep study. Post Interferon, I have been doing strange things in my sleep. I have been talking a lot, and saying some mean things. I have never been a sleep talker, but since the chemo I am doing it all the time.

I am also kicking in my sleep. I think it might have to do with the fact that I am being chased in all my dreams. I think I might be running away in real life, while I am running in my dreams.

So here are pix:
my hospital hotel room

sleep study: my hospital hotel room

my I/O device, 32 channels, 64 pins

sleep study: the I/O box

me hooked up, they hooked it up to the back of my head, front of my head, nose, voicebox, chestt, shoulders, and my legs (those were fun to rip off…)

sleep study: the electrodes

sleep study: the electrodes

the view out my window in the morning looking north at the Empire State Building. still dark at 6am.

sleep study: waking up still dark

i’m foggy. terrible night sleep. the nurses station was directly behind the wall where my head was. after an hour of tossing and turning i had to ask them to be quiet, and also if i could use my headphones. it was almost the same kind of sleep i get on a red-eye flight. not enough. not comfortable, and disorienting.

was very weird to walk out onto the street at 630, walking down 14th st and all the shops are closed. the street vendors are just setting up. very few ppl on the street. weird.

went to chelsea mkt and got egg sandwich, hot chocolate, and did my morning emails. went really slow, but still got to studio at 730, a new personal record.

gonna crash hard tonight

Noun troubles easing?

I think I am having less trouble with the Chemo Brain side effects: slow speech, forgetfulness, and trouble remembering people places and things. I still blank on names of historical people, artists, etc but not as much as I did before.

I spend less time starting a sentence with “hey have you seen the…” and then pause for ten seconds while my brain tries to connect the cerebral placeholder for the metal thing you hit nails with with the word… “hammer.”

And I forget peoples’ names less frequently. Towards the very end of my IFN I transposed one friend’s name and another friend of his I was just meeting, calling the new friend the old friend’s name. It was awkward and I immediately went into full explanation mode, but he was quite offended and would not let it rest. It hurt and I felt like a failure.

That was.a semi regular experience for a while. But it has only happened once recently. I mispronounced someone’s name, confusing two vowel sounds. I immediately corrected myself and then explained why that had happened, and everyone was very understanding. So much for the assumption that everyone in Portland is nicer than everyone in NYC. There are always exceptions.

On the other hand I have had increased dysesthesia in this last week. I think it is due to a slight increase in temperature, and a general tiredness. I am really tired. I have been pushing myself too hard, which will ease off at the end of this week. I get a week of breathing room, then go back to teaching.

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.