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.

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.

Approaching two years

I just returned from the College Art Association conference. It was at this confetence two years ago that I got my first indication that I had cancer. My dermatologist’s office called me wanting me to come in to the office as soon as I possibly could to discuss the growth removed the previous week. I’m not stupid. I knew what it meant.

Despite this, I was able to give my panel presentation. Functional denial is an incredibly powerful force.

Last year I was deep in the middle of the worst of the side effects. I was barely able to travel. And I was staying with K with whom things were strained and tensions high because of how bad shape I was in the last time I visited. I skipped nearly the whole conference, only showing up to moderate my panel. And i took cabs to and from, despite the fact that where i was staying was on the same subway line as the conference. I remember walking around the LA convention center baffled and exhausted — trying to find the room where we were supposed to speak.

This year was starkly different. I was only in for two days of the four day conference but I went to many panels and was actively engaged in the conversation. My presentation was full of energy. And I really felt good.

I’m ten days from my official cancerversary of February 22nd. But in a way the conference is a premonition of my milestone, much like the first phone call during the conference was a harbinger of the turmoil and illness to follow.

I get my two-year scans on the 18th and I meet with my dermatologist on the 22nd exactly two years from when I was in his office and he broke the bad news to me. Two years is a really significant point in the timeline. My understanding  is that most melanoma reoccurs at around 18 months. That is where the graph peaks. And it dips pretty agressively around 24 months. The curve never drops to zero, so the calculus means the area under the curve ends up adding up when you factor in a lifetime along the x-axis, but it is as close as it is going to get.

I am mostly excited and relieved, but a small part of me is waiting to exhale until after the results of the scans come back. I fully expect them to be negative, but then I was also sure that my sentinel lymph node biopsy would be negative: the odds were 85% that it would be negative and only a 15% chance that it would have made it to my lymph nodes. And yet it was there, 15% be damned.

So I’m getting ready to be hopeful, but I’m being cautious about letting my emotions move into that space yet. Even as i finish titrating off of Lexapro with my last 1/4 dose tomorrow, (leaving Klonopin as the only drug I am still on), even as I make it through this memory laden conference, I still have the scans. Then I can finish this transition and move into a new phase.

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


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

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.