Category: daily update

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.

http://www.nytimes.com/2010/02/23/health/research/23trial.html?pagewanted=1&hp
http://www.nytimes.com/2010/02/24/health/research/24trial.html?pagewanted=3&em

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.

My Second Cancerversary

Today is my second Cancerversary.

I went to my Dermatologist for my check up, and I was cleared.

I am still waiting for the results from last Thursday’s scans, so I am not celebrating yet, but this is a big milestone… in the making. I made my next Dermatologist appointment, and had the pleasure of scheduling it for six months from now, a three month extension to the routine from the last two years.

I am very very hopeful, but not celebrating yet. I learned the hard way about counting chickens before they hatch. I will count them when the report comes in. I will also finish my mixed metaphor then as well.

From my Mom

Mom read the last post and sent this:

just wanted you to know
yeah, I read the blog
and yeah, I’ll always be your mom

you just ran a triatholon
a full one
with no training

you are going to be ok
yes, you need to re adjust your expectations of normal

the new normal, remember

YOU ARE GOING TO BE OK

and yes, you are jet lagged as well
and yes, you are coming off big time drugs

remember  Jr year in college?

I love you
always
mom

Just for background, Junior year in college I was addicted to caffeine and worked myself to exhaustion, and spent a week in the hospital. It was pretty bad. I had to go home for a month to recover after I was let out of the hospital. I couldn’t even fly for a week or so after I got out, I was so wrecked. Anyway… I guess that is perfect segue.

Last night I had a pretty solid freak out about feeling overwhelmed. I was watching Stephen Colber w/ O and I got a jarring phone call about logistics from one of my assistants. The news wasn’t really that bad, it just foregrounded the extent to which I was kind of all over the place.  And then I panicked and really freaked out. I started thinking about all the things I need to do. All the places I’m supposed to be. And like Jennings’ post, I felt like everything was moving past me so fast, and I could not hold on to anything.

O and I talked about it a bit. I explained all the things I was supposed to be doing the next day.  And she told me that I shouldn’t. And I protested. Even though I knew she was right. I just couldn’t see how I could just say no.  Or not do things. In this case, it was a conflict between my weekly pyschologist appointment, and a five hour long meeting at the studio that I found out about two days earlier. I rearranged my whole schedule around it, but then realized I created a conflict w/ my psychologist. I tried to call and cancel yesterday day, but got a busy signal both times. I should have known it was a sign that I shouldn’t cancel…

O wrote an email for me, backing out of the meeting at the studio. It was almost impossible for me to send the email. O had to write and send it. I am so afraid of backing out of responsibilities. No one wrote me back to reprimand me. No one wrote me back at all. Maybe they expressed their anger at me privately. Or maybe they weren’t angry at all. Maybe I am just afraid of their anger… I came for the last hour of the meeting. Everything had gone fine without me. I contributed some in the last hour. My presence was helpful, but not essential. My absence did not derail the whole process. It was kind of amazing to me. And I don’t mean that in some self-centered way. I mean that I just feel so obligated to do what is asked of me, that I find it almost impossible to say no.

So it was a good lesson, I suppose.

I am trying really hard to learn from it.

I have said no twice today. I sent them to other people for help. It was good. And each case, the person wrote me back to say that it had worked out.

a bad case of the four o’clocks

I definitely think that something is up w/ my chemistry. I don’t know if it is because I am still jet lagged, or because today is day two of reduced lexapro, or both, but I’m definitely having a serious case of the Four O’Clocks. I can’t really focus my eyes. I’m kind of in doldrums. I went for a bike ride to try to energize myself. I rode myself pretty hard. I’m a little numb now, but I’m still pretty damn out of it.

I’ve been working all day. Today is the first day back in the work saddle since i got back from Europe. But I keep thinking about this article O sent me about slowing down. Dana Jennings writes in his nytimes Cancer blog:

But recovery means wholeness: mind, body and spirit. And I reached a point last summer and fall when I realized that even though I was back at work, once again juking and stutter-stepping my way through the streets of Manhattan, I hadn’t recovered at all.

I thought I had weathered the trauma of diagnosis and treatment, thought I was ready to focus on the future. But my body disagreed.

Physically, I was game, but I soon realized I was going through the motions as I became more and more tired. I felt like a spinning quarter about to nod to gravity and wobble to the tabletop. Mentally, I couldn’t focus: I became shawled in the monochromes of depression. And spiritually, I wasn’t angry — I did want to know what this cancer could teach me — but just right then I couldn’t make sense of my cancer-blasted interior landscape.

I hated to admit it, but I had to excuse myself from the day-in and the day-out if I wanted to fully heal, if I wanted to recover.

I was running too fast O sent it for me to slow down. I feel like I have to work harder to clear my plate so I can then rest.  But it doesn’t work that way does it…

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.

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.