Tag: dysesthesia

Off Seroquel, now onto the Lexapro

I am now off of Seroquel, and beginning to titrate off of Lexapro. Today I took 7.5mg, a 2.5mg reduction. One week of this, then I drop another 2.5mg. Rinse and repeat until I’m done.

Today feels a little weird, but it is most likely that it is a result of my jet lag. I just returned from 9 days in Europe. I slept in four different beds, and never really got great sleep. Plus I was working really hard.

I was there to work on a collaborative project. During the project we worked for 5 days straight, 10am to midnight. It was undeniably the hardest I have worked in two years. I was a little worried I was not ready for it. But I was rather pleased with how well I did. I made it through the first three days in solidly good shape. Day four I started to feel the effort. I had to take some naps, and started to get more sensitive to heat. Day five I was fading, but I held on. I never had a full dysesthesia attack, but I did get noticably more heat sensitive by the end.

Heat sensitivity is still common, but I am experiencing it as less and less of a debilitating problem. I am having much less dysesthesia. Much less. And when I do have it, it is much more mild. I haven’t had a full blown attack in a while. In fact it has been so long, I can’t remember the specific event. Probably one of the mornings I arrived at the studio sometime before I went to portland. Maybe four weeks ago? This is not counting the sensations when I’m on my bike: those are different. I’m sure I’ll still have them in some form, but it is noticeably better.

I’ve had a number of crisis moments recently: forgetting important papers, realizing my bicycle was stolen, witnessing a drunk German yell derogatory phrases that ended with “Hitler” at Turkish youth, and being pulled aside for extra security screening. While all of these were uncomfortable in very different ways, none of them sent me into the waves of dysesthesia that would have been inevitable even two or three months ago. I really think the progress is noticeable.

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?

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.

Back from the road

36 weeks done. I have 16 weeks left. 70% done. My mom is coming tmrw, which will distract me for a week. I’ll be down to 15, the last 3 or 4 of which will be in Portland. In my rationalization and fantasy, that makes it only 12 weeks left of solo, non-distracted injection. Of course this is a fantasy: I’m still months away, but it feels closer. I think that after week 39 (75%) I will feel a solid “last lap” feeling.

I was on the road for the last week, giving lectures with my studio mates. I did a lot better than the last time I attempted this in November. That said, this will be the last time I fly before I go home to Portland in July to finish my treatment. I did really well, but it was hard enough.

Some things have changed over the last few weeks that I have neglected to report. Most importantly, I’ve gone off the Atarax, which was controlling my dysesthesia, but also making me stoned, irritable, and sans-libido. I was in at my dermatologists, and he said “well, if you really think it is the Atarax, why not stop for a few days; you should feel the effects immediately — its not something that builds up in your blood stream. If the dysesthesia is too strong, you go back on it.”

Amazingly, I was fine. The three months on the Atarax had got me adjusted to knowing when and where i was most likely to experience an attack, and to avoid those situations, and controlling the reaction through meditation when it was unavoidable. So I have had to concentrate harder at times, but I have been rewarded with a better mood, a lot more energy, and a libido that is still suppressed (from the IFN) but a lot stronger than before.

I had several doctors appointments about 4 weeks ago. My CT scans are clean. My Oncologist continues to tell me I am doing better than most any of his patients. It is small relief, considering this experience feels so bad, but I wonder about those patients who are doing ‘worse’ than most of his patients.

The day I was in I had to wait 4.5 hours to see the doctor. I’ve gotten really good at being patient in doctors offices. I was told the doctor was running late when I signed in, and after about 45 minutes I checked in to see whether we were talking a few more minutes, or a few more hours. Mostly I wanted to know whether to pull out the laptop and start working. I was told that it was most definitely a laptop day.

The way the nurse phrased it was “There are some very sick patients here today.” She said it under her breath, so as to not let it spread too far beyond our little micro-conversation-sphere. I found out that one patient had to be admitted before I arrived at 10am, and several other patients were admitted during the 4.5 hours I was waiting. Apparently the doctor was away at a conference, and these older patients didn’t go to the ER when they should have, as their skin grafts became infected, or they got really sick with a pneumonia, or what have you.

Knowing that there are patients in the office who are likely dying gave me an incredible patience with waiting. I could have sat there for the whole day, patient and content, meditating on the wellbeing of those admitted patients, and grateful that I am strong enough to wait with patience.

One of the interesting things the doctor told me is that along with the reduction in physical changes that comes with month 10 (i’m still in the physical changes zone, but last month was much worse) comes an increase in anxiety and psychological effects. So months 6-9 are the hardest physically (all kinds of body falling apart.) But months 10-12 feature an crescendo of anxiety that doesn’t get better until after the last injection, and then, two or three days later, it disappears. Invariably, the anxiety vanishes within a week of the last injection.

I doubt that all the physical symptoms will go away quite so fast (my fingernails continue to disintegrate, i have Reiter’s lesions all over my legs) but it is nice to know that a good part of the mental stuff will go away fairly quickly.

A Letter to K

A letter to K, who was upset with me about my visit last November, but hadn’t said anything about it to me since.

jesus, k.

i’m sorry. i had no idea. i’m sorry.

i’m really caught off guard by this. stunned. totally reeling, from the content, from the tone. trying hard not try cry.

your friendship means so much to me, that it hurts both that i hurt you, and also that you didn’t tell me. these are small things that have built up into serious anger. I don’t even know what ‘startlogic’ is?

and also, i felt so grateful for your patience with me. which makes it all the more painful to realize you were angry at me for it. i was a lot more tired and sick than i thought i would be by the time i got to LA last November. each month provides new difficulties, and that was the month I spent rolling around on the ground, ripping my clothes off to try to cool off on the concrete. I got back, got a name for it (dysesthesia), and a drug for it, which then killed my libido entirely, and dulled the dysesthesia so that I can leave the house without being afraid of a seizure like episode.

i hate not being able to be completely independent. i hate the fact that my fingers have so many lesions on them that I can’t do my own dishes, and it hurts too much to put gloves on and take them off, that I have to save up dishes for a ‘gloving’. i hate that i have no appetite, which makes me crash, which makes me cry. i hate that i have lost my libido, and what that has meant for my relationship O, someone i really care about, who rationally understands it is chemical, but who feels rejected nonetheless. i hate that i have lost half of my hair. and i hate that i have to ask people for their seat on the subway or i won’t make it through the ride, and i more than anything i hate being told to fuck off by my fellow subway riders. my vision is going (i’m seeing double a lot, for a while i was hallucinating), my memory left a long time ago (vis-a-vis startlogic), i am starting to experience real chemical depression, (as per all the prognoses of the drug treatment.)

yesterday was the one year mark from my diagnosis. there is no question this has been the hardest year of my life. the cruel irony is that it is something i have to endure myself (it is a very lonely affair, and only people who have been *really* sick get it) and yet, am completely dependent on everyone around me, for things i can’t do, for thinks i would normally be able to do, for understanding.

i have an intern who has been working with me for two months. she is dedicated, works remotely half of the time, and is doing a great job translating the  book into Spanish. Today I realized I never told her about the cancer. It was a really awkward moment. I guess i thought that I was going to tell her, or that I already told her, or something. I don’t like to tell people immediately, both b/c of pride, trust, and a desire for them to realize that I am normal. or rather really trying hard to pretend like everything is normal. but when i told her, all of a sudden she realized why I kept coming in late, and somedays couldn’t even make it in at all. why I was getting my schedule all confused. And why i have so many drugs on my studio desk.

i’m trying so hard to act like i am normal, but i’m not. i’m on a “highly toxic” treatment. it is so hard to look normal from the outside, and be falling apart on the inside and the edges. and i’m not just talking about the way the drugs fuck with my emotions, and the ensuing chemical depression, but having my body fall apart from the inside. i have so many holes in my tongue i can’t eat anything without pain. i have a permanent gash in the back of my mouth near my jaw. when i eat, i leave bloodstains on my napkin at the edges of my mouth. half of the time i can’t wear in-ear earphones because the lesions in my ears keep getting re-infected. My eyes flake off scales of skin.

but i’m trying so hard to act like i am normal. maybe too hard

i’m really scared about this coming trip. maybe that is why i am reacting so emotionally to this. after the last travel, i cancelled all travel excepting this trip to CAA. i’ve turned down speaking gigs in berlin, croatia, argentina, los angeles, university of iowa, etc. b/c traveling is so hard. traveling is hard just getting to and from my studio and my apartment.

i had lunch with an artist friend last week. i knew he had been sick a few years back, but i didn’t know what. something thyroid related. turns out he had thyroid cancer. while they were removing the thyroid they found it had spread to all the lymph nodes in his neck — out those came. it was so comforting to meet someone who had been dealing with all of these things. I have found people here and there who had been diagnosed, but usually at such an early stage that it was just one minor surgery. It was nice to talk to someone who had something more advanced, like myself, but who is living his life.  His condition requires a little bit more maintenance than mine will be at three years out, as I did not have any organs removed, but he gets it.

He was *really inspirational* for me to try to chill out, he has basically stopped traveling, or speaking publicly, keeps his studio in his apartment, and doesn’t go out for social events. And despite all of that, his career is soaring.  he helped me think about trying to not pretend like i am normal. to sleep in all day because that is what my body needs. to say no to things. more often. and to rest. because it is my life on the line.

I’m sorry if this is a lot. A big response. i don’t want you angry at me. i don’t want you to hold a grudge against me for something i either don’t remember, or couldn’t control.

i want to stay with you because i want to spend time with you. i want you to meet O. i could stay at my aunts, or cousins, or CHP has even offered her couch. but i don’t get to see you very often, and these days, with travel so much harder for me, i see you even less.

if there is anything specific i can do to avoid impinging on you more than a normal visit would, please let me know. can i order groceries from a Fresh Direct style delivery service? I’ll take you out for dinner every night. i’ll rent a car, if you think that would help. i will bring lots of cliff bars.

http://www.pinkdot.com/
http://www.paradiseo.com/

???

I love you dearly K, and I don’t want you upset with me,

m

Atarax Update: New Side Effects

Nothing is easy, and there is no free lunch with this stuff.

The Atarax (which I am taking at a lower dose, with greater frequency), *is* helping with the Dysesthesia attacks. Before I would get at least one attack that was at least a level 7 or 8 on a scale of 1 to 10, and several attacks in the 2 to 5 range. The drugs have pulled that top threshold down to a once a day level 4 or maybe level 5 attack, with several attacks that are in the 1-3 range. These smaller attacks I can manage with breathing, self-hypnosis, and temperature (ice and just walking outside.)

So… the side effects. I’m irritable, I’m having nightmares, and I have completely lost my libido. Like “whoosh” gone. It took me a sec to realize that is what had happened. But yes, that is what had happened. You win some, you loose some.

I told my therapist about it, and she said that she was frankly amazed that I managed to continue to have sex through this whole thing at all. Her comment was that between the hormonal shifts, and the physical falling apart, someone not as strong or vital or depression resistant would not have even made it this far.

New Drugs Helping!

I have been on Atarax for a week, and it is really helping with the itching and the dysesthesia.  Atarax is a high powered antihistamine. The Dr put me on 50mg 3x per day, and that was quite a wild ride.  I pretty much was stoned and staring at the wall, or sleeping.  I cut the dose in half, and am taking it 4 to 5 times per day, and the effects are more even, and i’m less zonked.

The really good thing is that my dysesthesia symptoms are markedly reduced.  I guess the idea is that the dysesthesia is happening in the nerve endings, so if you dull the inputs via an antihistamine, it will reduce the chances of the dysesthesia.  Or something like that. Regardless, it is working.  Which is not to say that I am not having episodes.  i have had several, but whereas I was having one bad episode per day, and two to five moderate episodes, now i have one bad episode every few days, and one mild episode per day.

Strangely, though, I have been having more episodes at night; waking up from nightmares in full pins and needles.  And generally having restless nightmare filled sleep.

More Drugs Please

I went up to the dr yesterday, and got my FMLA papers signed.

The other goal was to get some drugs to help with the dysesthesia attacks, as well as show him all of my lesions and bleeding sores, and other gross things.  I mentioned my dermatologist gave me something for my lesions which had helped a little bit, and another which didn’t.  He immediately asked “were they steriods” and i said I didn’t know, and he kind of got interogative with me, asking again “well, you should know if they were steriods.”  And I immediately went into a full blown dysesthesia attack.  its that confrontation, that conflict, that interogation, that possibility that I (the expert) might have made the slightest mistake.  In a healthier state, I could have had it roll off my back.  But not now.  The slightest confrontation over something as simple as a scheduling confusion sends me into dysesthesia land.  Which is why it is close to impossible for me to teach on the IFN.  I tried a little bit at the studio, and I just end up clutching my side shivering in a fetal position.

So in a sense it was perfect timing.  He actually got to see it happen.  And see that it was real.  (Maybe my subconscious produced it for him…)  He immediately went into support mode, telling me I was doing well, and that if I wanted I could take a week or two break.  But I dont want to take a break.  It just will delay the overall end point.  I only want to take a break if I’m too sick to take the drugs.  RIght now my WBC is at 2.5, and holding steady there.  It dipped to 1.8 after Banff, but has been steady at 2.5 otherwise.  3.5 is the low range of “normal” so I am still immunosurpressed, but I’m hanging in there.

If the goal was to get drugs, that was a success.  He gave me a prescription for Atarax which is an antihistamine.  Now that I look closer, it is just a higher potency of the over the counter drug I was already taking (Zyrtec). And it is ‘sedating’ so i’ll be more stoned and sleepy.  I’m supposed to give that two weeks, and if that doesn’t take care of the dysesthesia, I start taking Neurontin which is actually an epilepsy drug, which is now widely used to deal with neurological pain.  Frankly, the closest thing I can describe my attacks as, are seizures: I am not totally out of control of my body, but I loose a lot of control to the pain, I go fetal, and afterwards I am disoriented and kind of stoned.

The other thing that happened (in the midst of my attack, me trying to breathe and do meditation on the paper on the exam table, while my doctor keeps saying “you’re doing great”) is that I got my FMLA papers signed.  My “doctor’s note” so to speak.

We calculated out my treatment schedule, and if I take *no* breaks in treatment I will be done the last week of July 2009.  But considering I’ve had to take 4 weeks of breaks in the first 17 weeks of self injection, it is unlikely I will make it through the remaining 31 weeks of self-injection without having to take a break.  So realistically, we’re talking an end of August beginning of September final injection.  As the drug takes some time to work its way out of my system, my Dr has designated a 1 month recovery period, so he has me coming back to work after September.  E.G. October 1st.  I will more or less miss the first 5 weeks of the semester.  I’m working out the details of what that means.  sitting w/ my dr and counting out when I would be done forced all of this.  frankly i was very much in denial of the end date.  it seems so far away, i felt better not thinking about it.  but because it runs up against the fall semester, it is important to address

Dysesthesia, or knowing the words

I went to the dermatologist, who called the flaking on my eyes Eczema.  He called the lesions on my genitals something else (I forget).  He gave me a cream for both.  And told me to take Zyrtec for my itching.

And he gave me a name for my pins and needles: Dysesthesia.  He said that he has seen it in IFN cases. And he also mentioned some drug that may be useful in treating it.  But then backed off, and said I should ask my Oncologist, because it was out of his purview.  I forgot the name of the drug.

It feels really good to have a name for this mysterious side effect.  And a wikipedia page.  That helps too.