recovery – Page 2 – Melanarrative

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

my I/O device, 32 channels, 64 pins

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…)

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

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

Month 3 was lackluster… onto Month 4

I just finally went back to teaching. Taught my first class last week. I realized I was really worked up about it. I had been 20 months since I had taught. Long time! i totally procrastinated my lesson plan, and improvised it all day. It was a full day of classes. When I came home I went and rode four laps around the park. I had all this energy. It was like I was waiting for that moment to come and pass, and until then I was stuck.

I’m three months out of the Interferon treatment. I had a bad third month, largely b/c I got the dreaded H1N1, but having cleared that, I’m doing pretty damn well. Today I rode to the studio and back. And I am *seriously* considering riding in on weds for a department meeting. I was having bad heat related dysesthesia, but it seems to be easing. Though i am out in fall weather riding with a t-shirt and the lightest shorts i have, and everyone else is all bundled up in pre-winter gear.

O wanted to give me a surprise gift for my first day back at school. She went through the usual choices (flowers, chocolates, cards, etc) and decided none of them were… well… enough of a… splash! So she came up with this idea for a surprise. She had worked it all out with my department secretary, my office mate who knew my schedule, etc. Then she ran it by PD and GY and a couple of other people, and they started to give her silent responses, or hesitation, and or flat out “um, no that is not a good idea” responses. So she got cold feet, and canceled.

I found this out the night before I went to teach. She decided to tell me what was *not* going to happen. She kind of figured that I would like the story of what *would* have happened as much as like the experience itself. I think she was right.

What would have happened is that sometime after the second break in my 9am class a singing telegram man dressed in a pink gorilla costume would come give me a box of chocolates and sing me a song about… how I like chocolate, and dogs, and riding my bike, and stuff. O had to fill out a form with things I liked, from which they created a song. The pink gorilla would sing his song, bestow the chocolates, and then leave me and my students probably a little befuddled, possible overwhelmed and in a state of panic, and most likely laughing at the gorilla, and not with the gorilla, (and hopefully, yet probably, laughing at *me*). LOL.

Marisa was quite worried it would overwhelm me, which would lead to a freak out dysesthesia attack. Or that it would completely freak my students out, on what was effectively my first day with them, though it is halfway through the semester. I think she was right on both counts.

So instead, at about the same time the pink gorilla was to show up, I told my students the whole story. As a story they found it absolutely hilarious. They were pretty blank faced the whole day, not laughing at any of my jokes. Not really even reacting to anything I said to try to get a reaction out of them. Pretty blank. But this got a rousing laugh. So in the end, it was a major success, as a story, and not a real event.

Swine Flu. Seriously.

It has been confirmed. We have the swine flu. And O has pneumonia on top of it.

It is not as bad as it is made out to be. It is like an average flu, just way longer, and much easier to catch. Though I think my tolerances are off, having over a year in a state of “feeling like I have the flu.”

That said, I can’t even imagine what this would have done to me if I was on IFN, and with the immune system I had at the time. I would be totally wrecked.

The good news is that I am *not* contagious.

Swine Flu? Seriously?

O thinks we have the swine flu. H1N1. She got sick a couple of weeks ago and hasn’t really gotten better. I got whatever she got but not quite as bad. We both got better then got worse. Apparently this is normal.

I rode to Eyebeam and back by bicycle for the first time in 20 months, then had a full on dysesthesia attack on the subway and bus the next morning. Night and day. And I have basically been in bed since. I barely survived a trip to the grocery this evening. Came home and stripped down and iced. Doesn’t help that the seasons are changing. The apartment heat just turned on today.

O is going to the Dr tmrw because her flu has turned pnumonia like. I guess we will find out tmrw.

Is the swine flu kosher?

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.

Lost Post — Four Weeks Out

Somehow this post was scheduled, but never actually went live

Still only 40 or 50 percent, and my physical recovery lags behind my mental recovery. My dad said it was like a fog lifted and all of a sudden i could see and speak clearly. I mostly am happy that I can wake up without having to take tylenol + advil and return to bed for 30 minutes until it kicks in. I haven’t taken tylenol for two weeks now. I actually don’t even *have any* in the house! kind of amazing, considering I was taking it around the clock for 12+ months.

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

Hey!

No news (on melanarrative) is good news?

J

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.

LOL

Four Weeks Out: I’ve been too well to want to write

I’ve been feeling so well that I have been throwing myself into feeling well. I keep realizing I need to write a status update, but I just would rather ride my bicycle, or have sex, or make a good meal, or email a friend I haven’t seen in a while to meet up, or… All of this is good. Really good.

I’m exactly four weeks out from my last injection. To put that in drug terms, during this time I have taken Atarax less than 5 times, for a while I took less and less Klopin, I only took Tylenol when I had headaches I realized were actually Klonopin withdrawal symptoms, and thus started them back up. I’m meeting with my Oncological Psychologist today to discuss phasing out strategies for my remaining three drugs (lexapro, klonopin, and seroquel). we’ll see what he recommends. Obvs has to be done carefully.

Okay, emotional terms: I’m happier than I have been in 18 months. I feel like myself again, except better. The process of facing down my own death made me less afraid of death, failure, admitting mistakes, honesty, etc, and more willing to ask for help, be honest about emotions and needs, and better at saying no to people (as I always say yes, and always end up over extended.) I’m happy, full of energy, and a lot less of a pain in the ass.

Okay, my energy levels: I have only had two proper dysesthesia attacks, and a few tremors that I have been able to control through meditation and breathing. I get up in the morning, and can go through a whole day. All this, despite the mid August NYC heat. I’ve been riding since my return 6 days ago. Rode three of the last four nights. 2, 4, 2 laps around the 3.3m park. Feels really good. I’m hitting lactic threshold in my legs, and i’m pushing aerobic capacity, especially when i did 4 laps. it feels good to be able to feel where my body is. where i can go. and then week by week, expand that. i’m good at rehabbing, actually. i’ve done it a *lot* of times. too many times. a lot more than I should have…

It is fun to restart things in the studio. I have spent this week taking a big picture look at everything we were working on, and figuring out what needs to happen next. A lot of strategy. Big picture thinking I could *not* have done a month ago. Turns out I’m working on 101 distinct projects. Oops. About 20 of them are more than 90% done, and just need finishing touches, and at least 30 are just brainstorms i sketched out on paper and a lot of them can be straight up killed b/c the other ones are so much more worthy. But still. Way too many.

I’m riding the subway. I’m actually typing this on the subway right now. PDX got the heat wave, and NYC had a luke warm rainy summer until this week that I returned. Everyone keeps saying this is the hottest week all summer. It is supposed to chill off in a week. But it feels good to realize I can take the worst of the NYC summer, and I’m okay. I’m still wearing my ice vest for commuting, but I don’t need it anywhere near as much as I did a month ago.

My hunger is back. I’m eating more. I’m eating faster. I’m eating everything. I have had all the things I was unable or prohibited from eating: shellfish, orange juice, lemonade, mustard, rare steak. Strangely, I have not had any sushi yet, and though I had some Indian food, it kind of kicked my ass from the spice.

I have glasses now, my hair has thinned and has no curl anymore. I had to cut it really short to get rid of all the chemo hair that was brittle and frizzy. I can’t wait for my fingernails to start growing back. I can brush my teeth again, and finally shaved with a razor today, for the first time in maybe 9 or 10 months; my skin just couldn’t handle it.

All in all everything is going so much better. I’m looking forward to going back to teaching. My department chair has been really good about working out a schedule that eases me back in. I start with some advising and internships, and going to faculty meetings, and pick up the second half of two “team taught” classes mid semester. I am confident I will be able to do that, and looking forward to being back in the classroom. It has been 18 months, and will be another two more.

Unless anything drastic happens (good or bad) I will prob be writing less and less, which is a good thing.

Chemo Brain

O sent me this article just now from the NYTimes on Chemo Brain, which is the word doctors are using to describe the long term cognitive side effects that some chemo patients experience on a permanent/semi-permanent basis.

As more people with cancer survive and try to return to their former lives, a side effect of chemotherapy is getting more and more attention. Its name is apt, if unappealing: chemo brain.

Nearly every chemotherapy patient experiences short-term problems with memory and concentration. But about 15 percent suffer prolonged effects of what is known medically as chemotherapy-induced cognitive impairment.

I have been struggling with these symptoms all year, and they are starting to go away. I still have problems with words and names. If interrupted while telling a story or doing some multi-step talks frequently can’t remember what I was doing or saying. And today while driving, I got lost, realized I was lost, reoriented myself, and then did the same thing going the other direction, and then did it again. 3 times! I kept getting off the freeway, turning around, and going the other way.