Category: daily update

I have tried really hard not to play the Cancer Card.  When I was riding the subway post surgery I would ask people to give me their seat.  It was really awkward.  I felt bad.  They didn’t quite get it.  I ended up standing more often than asking people for their seat.  Interestingly, not everyone I asked gave up their seat, confounding Stanley Milgram’s old research.  People didn’t believe me.  I even offered to show them my scar.  They usually made the talk-to-the-hand gesture. I guess tImes have changed in NYC.  It is a more selfish city.

When I was at the airport, I brought a letter from my doctor, and they got me a wheelchair, and whisked me through security. The gate was so far into the concourse, I probably would have had trouble walking all the way there.  They have an infrastructure for playing the Cancer Card, so I feel okay doing it.

At the Food Co-op they have an infrastructure as well: Medical Leave.  There is some paperwork, but it is painless and non-confrontational.  I was at the Co-op today, and I dropped a glass bottle of iced tea on the floor.  It just slipped through my hand.  I was having that kind of a day.  It exploded all over my hands, and my pants.  I got a little cut on one of my hands.  There is no infrastructure for telling one of the shift members that you can’t clean up the mess you made because you are in a post-injection side-effects daze.  So I kind of wanderd up to the squad leader, and said something about a broken bottle in the end of the express aisle.  Someone told someone, and it was taken care of.  But even that was hard for me.  My brother told me later that I should have just said to the shift worker on that aisle “I just started a new round of chemotherapy, can you help me and take care of this.”  I probably should have.  I guess it is easier to say “I am taking this drug that you know means I have cancer, and also has really bad side effects” than “i have cancer, so take pity on me.”

I had to play the Cancer Card pretty hard core yesterday.  I have a medical bill from 2 years ago for $12,000, that I was promised I would only be responsible for my $1700 deductible.  Billing staff changed.  I’ve been writing letters for nearly two years, trying to get them to understand what the old staff promised me.  I called up the billing coordinator and layed it all out.  explaining the whole history of the diagnosis, surgeries, trip to portland (hence I didn’t get any of their mailed bills for the last two months), return, and start of new Interferon treatment.  I still wasn’t really getting through, and so I pulled out the full weight of the Cancer Card.  I didn’t have to fake the almost-in-tears warble in my voice. I said “Stage III Melanoma has a 40 to 60 percent mortality rate.  I’m 30, and I’m fighting for my life.  I have 50/50 odds.”  At that point her tone changed, and she said “okay, send a letter saying all of this, and I’ll discuss it with the doctor. I got of the phone and started sobbing.

Now I exagerrated a tiny little bit.  It is true that Stage III melanoma as an average does have a 40 to 60 percent mortality rate, but I am so far to the good side of the bell curve, that my numbers are better.  I don’t have 50/50 odds.  Its more like 25/75.  or 20/80.  or 30/70.  The doctor won’t give me a hard and fast number, but he will say “the literature suggests that you have a 15 to 30 percent chance of recurrance.”  Recurrance means it shows up in one of the other organs or lymph nodes.  I still have a roughly 22.5% chance of recurrance, which means bad things.  It doesn’t exactly mean death, but it often means death.

But even in saying these things, they become real.  I really felt that possibility of dying in a way I hadn’t since my doctor told me the lymph node was positive.  At that time, I had found a way to accept it.  I think I am struggling to do the same now, while trying to understand really how likely that outcome is.  It is unknowable, of course.  And therefore vexing.  But having to pull the Cancer Card and say “I very well may die” made me think a lot about that possibility.

I was talking with my psychologist today about all of this.  I related her this story.  I wondered out loud if I was doing the right thing, trying to go on with my life, hoping that I would make it through this 11 month treatment intact, and that the Melanoma would never show up again.  She asked me an interesting question.  She said “Well, what if the doctors told you you had one to two years to live, what would you do differently?”  And I thought about it, and said “probably nothing. i probably would continue to go into the studio, I would finish the book I’m writing, I would try to ride my bicycle as much as possible.”  Truth be told, I might try some things I would never have done otherwise – I might do some drugs (something I never do), or I might learn how to ride a motorcycle really fast (something I was always prohibited from doing growing up).  When I was in amsterdam before the surgery I even thought for a second “Hell, I might die, when is the next chance to actually frequent the famous red light district.” But I didn’t act on it.  Partly because the whole scene was totally revolting to me, but also because deep down I harbored hope that this wasn’t my last shot.  That I wasn’t about to die.  That I would be back to Amsterdam repeatedly over my long and happy life.

So the lessons learned today:

First: If life were a RPG, playing the Cancer Card would open any door, and convince anyone to let you do anything, but by playing that card you would loose half of your hit points.

Second, I think I am doing what I should be doing: trying to live my life in some semblance of the way I have built it over the last few years, without compromising the priority of resting and healing.

N.B. this is the first time I have used the “death” tag