cancerversary – Melanarrative

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.Â 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.

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 understandingÂ 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.

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.

13 Candles

O made me a "last lap" prize. I have 13 weeks left, which is 1/4 of the total time. Its like running a mile, and coming into your last lap. I can see the finish. I can feel the finish. This all will be over soon. Three months doesn’t seem like a short time, but considering I’ve been doing this for 14 months, it is pretty doable.

Today is my Cancerversary

I was diagnosed with Melanoma one year ago. O took me out for a fancy dinner, complete with a marzipan scroll that says “Happy Cancerversary” on it. And she gave me this awesome trophy. The trophy has a special story. It was one of the props from when Lance Armstrong was on Saturday Night Live. I don’t thing it was actively used — maybe it was an alternate, or just in the background, but it was made custom for Lance. So say what you will about the fact that he was better at covering up his doping than all the other riders who did the same thing, but got caught: the man kicked cancer’s ass. So the base is enscribed “KICKING CANCER’S ASS, 2008-2009.”

It is crazy to think how different life was a year ago. How much I’ve grown. How much violence my body has endured. How drug addled I am. And how much I feel like a different person.