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.

a friend’s bad news

I wrote this at the end of August, but didn’t feel it was appropriate to post it then.  Then I forgot about it in my draft folder.  The good news is that everything checked out fine, and there was no Cancer.  (I spoil the ending, I know…)

B came up to me today and asked to talk.  she seemed really distressed.  strangely the kind of distressed i usually associate with someone about to tell me that they are really mad at me.  i was really confused.  we went over to where the chairs are at eyebeam, and sat down.  i asked her if she was okay, and she said “no” with real conviction.  she paused, and said that  she went to the doctor for a mamogram, and then she paused.  stunned.  i just reached out and held her hand.

they found calcifications (nodes) in her breast.  apparently they are concerned about them.  that some patterns are worse than others.  I don’t know much about the histology and prognoses of breast cancer.  i only know about melanoma, and each are so different.  but what i do know is what it feels like to be told you need to have a biopsy.  i told her the things i wished i had known at that moment.  and i did it with a calm and collectedness that surprised me.

i told her that until they confirm that it is malignant, she needs to remain calm, and not go down that road mentally.  i told her that percentages and odds of outcomes are irrelevant: i was supposed to be in the 85%, but I ended up in the 15% (with metastisis).  i told her that she could come and cry at any time and i would hold her.  and i told her that she shouldn’t keep it bottled up: i waited way too long to tell people, pretending that it was not a big deal.  but the fact is, it is a big deal from day one of discovery.  emotionally, and physically.  i told her to figure out what she can ask for help with, and ask for it: from her parents, from her friends.  and i told her what SL told me the first day: she needed to learn how to meditate.

and i told her the story of when i was 17 and they found big nodes in my lungs on a routine physical.  they had to do a biopsy.  i thought i was going to have cancer and die.  but it turned out that it was just scar tissue from a childhood pneumonia or something.

until you get confirmation that something bad is going on, you have to be optimistic and remain mentally strong.  so much of it is a mental struggle.

I didn’t write it at the time, but the other thing I was how I was becoming The Cancer Expert, and people were coming to me to talk about their histories, and their current scares.

Can’t Sleep

Its late, i’m up.  Tossing and turning in bed.

I was thinking about the blog.  I was thinking about being done with treatment. I was thinking about how I will have to transition to a new state of not-quite-healthy-forever.  All my lesions will go away.  All my dysesthesia will be under control.  I’ll have a rough time coming down off of my Klonopin, and I’ll get my sex drive back.  But I will still be living with a 15 to 30 percent ‘rate of re-ocurrance.’

I don’t want to do this again.

Depending on how you count, next week is halfway through the 12 month treatment, or two weeks later is halfway through the 48 week self-injection sequence.

And the end of February is the one year mark since I was diagnosed.

I don’t want to do this again.

39 weeks to go…

i just finished my 9th week of self injection.  18.75% done.  39 weeks go to.

if you count the 4 weeks of IV IFN, i’ve done 13 weeks, which is exactly 25% of the 52 weeks of treatment.  of course, that doesn’t count my time on drug holidays.  i started the IFN on June 16th (the day before I started this blog…) Which is 4+ months ago.

I have at least one month of drug holiday time in there.  it feels like i was on holiday for more than that, though.  i guess it was just one week in the IV IFN, two weeks in between IV and SubQ, and then two weeks when i got back from Banff and was super sick.  I guess the first week back on the IFN felt like a holiday b/c I was only on a 10 MIU dose.

i was diagnosed on feb twenty-something.  I got the first call on the 20th, but didn’t formally hear the words “you have cancer” until the 22nd.  so that makes it 8 months i’ve been dealing with this.

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

Appointments Galore

My Dermatologist made me an appointment with a MOHS surgeon that following Monday.  SM basically insisted that she come with me.  I thought I didn’t need it, but boy was I glad she was there.

This whole period was full of accelerated learning, and radical changes in my own self image.  From fit to sick.

February 25th, 2008

I went to the dr just now. Just consultation. I go back thurs for a Narrow Margin Excision, where he will remove the remaining bits of The growth. Next Tuesday I go up to Columbia to a different Dr, for a consultation about next steps.  My understanding is he will probably recommend a Wide Margin Excision and a Sentinel Lymph Node biopsy. They will both happen in the same procedure. Not sure when that will happen.

Will know more next Tuesday.  In the meantime, I’m feeling okay.  The new info doesn’t really calm me down that much, but it doesn’t freak me out further.

The other thing I learned today is that Lymph Node biopsy is a euphemism for extraction. Because they are so small, they basically have to remove it to get a sample.  They used to remove all of them, but b/c of some side effects, they now only remove the sentinel node (the first one)

The key is still whether it has spread to the lymph nodes.  The dr said that all things considered, he doesn’t expect it there, but he thinks the dr at Columbia will recommend checking just to be sure.

Diagnosis: Invasive Malignant Melanoma

I am writing this to help me remember what has happened to me. One of the most amazing things about trauma is its ability to erase memory.  I’m sure it is a Darwinian survival mechanism.  If you dwell too much on terrible things that have been done to you, you will never be whole again.

But these four months have changed so much about me that if I do not reckon with what has happened to me I might not understand whom I have become

On February 22nd, 2008 I received my diagnosis of Invasive Malignant Melanoma, the bad kind of skin cancer.

It was snowing out.

I left my dermatologist and trudged through the greying snow berms of TriBeCa to the offices of a fancy non-for-profit art organization for a meeting about their website.  They have a big website that had a lot of problems, and they wanted my web design collaborator and I to redo it.  Or at least tell them how we would, and how much it would cost.

Straight out of the drs appt I walked into this business meeting for the largest site I had ever bid on, and totally rocked the meeting.  I was totally on point.  I answered every question the right way.  I dropped all the right references.  Made them totally reassured about the right things.  And they had no qualms when we told them it was going to cost $100-125K for their site redesign.

Two weeks later we found out the director wanted us to do it, but their board wanted to go w/ some other more mainstream “firm.”  While it was dissapointing, it was a blessing in disguise.  Because I had Melanoma.

So despite my diagnosis, I held it together.  I rode the train back uptown with my collaborator, got off at the same stop, but turned in different directions, as he went back to his appartment, and I went to the studio.

I held it together until I arrived at the studio.  then i fell apart.

I walked in, stunned, and SL immediately asked me what happened.  “Was Dallas that bad?” referring to a conference I had been at the previous three days.  And I told him.  He was the first person I told.  I think I said “I don’t even know how to say this… I was just told I have Melanoma.”  He made some perfect jokes about cancer that I forget – he has a great way of using humor as a healing mechanism.  And told me that his wife’s mother was diagnosed with Melanoma twenty years ago, and is still alive and well.

I sat down and wrote this email to my parents, my brother S, my roommate P, my good friend X and the woman I was seeing K:

i’ve been having a rly shitty 36hrs.

my flight was cancelled out of dallas.  i had to sprint through the airport in houston.  this time i made the flight, and when i sat down in my seat, the phone rang.  it was my dermatologist’s assistant asking me to come in as soon as possible to speak w/ the derm about the lab results from the supposed blood blister he removed on my right calf.  i asked him to specify, but he said that the dr wanted to speak to me in person.

so i spent much of the flight having horrific visions of me as a chemo patient.  at the same time knowing that was really fatalistic for skin cancer.  but also knowing that i am not stupid, and that the results were most likely skin cancer.

and then when i got off the plane, i got a msg from my lawyer saying that the condo plan was going to be approved in the next day or so.  He had been trading phone calls with the atty gnrl to slow it down two or three days so as to make it go past march 1st, but that was not going to be possible.  to remind, march 1st is the day after which i am on a new lease in the apt w/o J on it.  this is significant, b/c it reduces her claim to a right to purchase the apt.

great, right?  double whammy.  spent the evening in a daze.  not sure whether to email about everything, or not.  whether to talk about the fear of cancer, or not…

yeah, so went into the dr today. yeah, so it was a malignant melanoma.  “i have cancer.”  weird, right?

it was “Clarks Level 3” of 5.  The depth was 1.88mm. Less than 1mm lymph node biopsy is not needed.  More than 3mm, and you go straight to chemo.  There was no ulceration, which means that it didn’t break the upper reaches of the skin, or something like that, which it has to do to spread to the lymph nodes.  So, it could be worse, could be better.

i have apt on monday w/ melanoma specialist who will excise a moderate sized chunk of my right calf, and send me to a different specialist who will biopsy my lymph nodes. if the sentinel nodes (back of knee, groin) are clear, then i watch carefully for two years and am a new man.  if they are not clear, then there is “other stuff.”

at one point i asked him whether i was going to die.  it is weird to ask that question.  he said that people do die from this, but that it was unlikely in my case, and that regardless it was too soon to speak about percentages and outcomes. i have to wait for results from lymph node biopsy.

so here i am at the studio.

i just arrived.

im ready to go home.

i haven’t cried yet, but it will happen.  still a little shell shocked.