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.

Bleeding Zeppelin


I just woke up.  With a bloody nose and an irrational desire, no… need, to listen to Stairway to Heaven.

I found a quick mp3 that was so over-compressed it almost sounded like it was live.  It was kind of an amazing experience.

And I guess the lyrics are about life, power, death and choices, and “its not too late to change road you’re on.”  I realized that for probably the first time just now.  Because I haven’t really listened to the song since the last song of my last High School Dance.  Every dance ended with that wistful “and she’s buy-uy-uy-uy-uy-ing as stairway to hea vun.”

Scarfs, Clothes and Memory

My godmother sent me her late husband’s scarf for my birthday.  Jack passed away several years ago; he had been waiting for, and then had a liver transplant that did not take.   i *do* remember Jack wearing it. I will wear the scarf with the strength and power and perseverance that Jack lived his life with.  it is both hugely emotional for me to receive this from her, and for her to give it.  and it is probably, in a certain way, cathartic.  memory is hard.  especially the sweet ones that we want to hold on to, but have to move on from.

i have a box that has three stuffed animals that my ex-girlfriend and I used to play with.  they all had names and characters, and histories and personalities. i don’t want to let go of those memories, but at the same time i can’t impose that on someone coming afterwards.  and those memories have turned so bittersweet.  (and not like all the chocolate i got for my birthday).  she is an *ex* for a reason, despite the funny scenarios she could concoct with two stuffed tigers and a dog.  maybe some day i will find someone to give them to, and show them their personalities and their voices. (they all have very distinct voices!)

My aunt sent me a scarf for my birthday last year.  She had begun knitting extensively when she started chemo for lung cancer.  The scarf arrived late, in mid january.  That was almost exactly the time I first went to the dermatologist to ask him to look at the bump on my calf.  It is amazing the power we can attach to clothing: sometimes I think of that scarf as her way of warning me.  Or of welcoming me.

Saying “I Love You”

Since the diagnosis i feel like i have an increased capacity to love people, and for people to love me.  or, put another way, i’m more likely to tell people i love them, and they to tell me.  people whom i very close to (but never said it), but also people whom this ordeal brought me closer to.

I don’t think it is the fear that i might not get the chance to say it b/c i might die, but rather that the possibility that i may die spurs me to do things I really wanted to do anyway.  its not that the diagnosis has me backed into a corner, but rather that it has become an opportunity to take advantage of.

I guess I became much more comfortable with the idea of loving platonically in the last few years.  I’m not sure when it happened, but it did.  I became much more comfortable with saying it, even to my parents.  I mean, of course, I love my parents, but I think that in the last few years something changed about the way I related to the phrase that allowed me to really mean it.  Or to recognize that emotion as love, though a different kind of love than romantic love.

So I got more used to saying it, and the idea of it.

Correspondingly, my cancer caused my friends to tell me they loved me.  I could speculate on causes: that it was the fear that I might die and they might never be able to tell me, or that the *realness* of the cancer allowed them to break out of their fear, or soomething else equally speculative.  But I will simply say that it has happened, and it is comforting.

Playing the Cancer Card, OR Saying “I might die”

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