Tag: telling people

The Compassion of Others

Today I have mouth sores. I did a quick search, and it is a little mentioned but documented side effect of the Interferon. Kind of like my mouth is raw in lots of parts.  Or like I burnt it on some really hot pizza, except not just the roof of my mouth.  Like ulcers, or gum disease or something. It hurts to eat food. I noticed it last night, and started using a mouthwash, which hasn’t helped. The interwebs say that there are some scary sounding iodine rinses, or you can just try warm salty water. Though neither work that well.  I’ll go for the salty water.

But it makes is really hard to eat. It hurts to have anything in contact with those areas. Especially hard or rough things. So when i got my sandwich today at the sandwich shop I go to nearly every day, I asked them to cut the crust off of the bread. I was bashful (if not ashamed) of having to make such a strange request. I mumbled something about having sores in my mouth, and chemotherapy. The two women who work the register know me well, and while they don’t adore me per se, I sense a fondness from them. They always remember that I don’t want a bag for my sandwich, and they love that I sometimes order one sandhich and 3 or 4 cookies (for my assistants!)  I guess I’m a regular. So they smiled, maybe not really understanding what I mumbled but not caring, and told the guys making the sandwiches what I wanted, they all laughed. Not a mean laugh, but a hearty “never a dull moment” laugh. I said “at least I made them laugh.” In the last six months I have realized how important making people laugh is to me.

On my way out of the store the man who ordered after me, but got his sandwich before me (because they didn’t have to cut the crust off!) held the door open for me. As I reached to take the door from him and walk through the threshold he said, “I hope you feel better.” I had not paid him any attention, but he heard enough to know that something was wrong. He might have heard me say “chemotherapy” or “mouth sores” or maybe he just knew of the feeling of needing the crust cut from your bread.

sandwich without crust

My sandwich shop, like my studio, is in Chelsea. Chelsea is many things, but one of them is a neighborhood of men who have survived. Men who have seen their friends and lovers die. And men who understand the toxic side effects of therapeutic drugs. It was so comforting to have that anonymous man offer me his support. To keep the door open with his hand, and offer me his words. It was comforting, but it also made me cry. I guess I’m used to crying on the street at this point

His brief comment was an act of recognition. He was saying “I know you. Know that I know you. Know that you are known and noticed for the pain and suffering you must be going through.” Obviously he didn’t say that, but that is what those words meant in that context.

I have been really honored to have friends and colleagues and mentors and peers who have come out and told me their own stories of illness. Stories I did not know before. Cancer, HIV, immunodeficiencies, epilepsy, etc. When you are publicly sick, people offer their hand.

A number of the “How to Survive Cancer” books and websites and pamphlets that I have read are big on having you *not* allow people to tell you the stories of their great aunt melba who had x or y cancer. They counsel you to say “I’m very sorry about your great aunt melba, but each case is different and I am trying to remain positive about my treatment and outcomes.” They are especially aggressive about that if great aunt melba died.

While I have had to pull that line a few times when it became clear aunt melba was dead or dying, the vast majority of times people have told me about their own health struggles it has been comforting.  It is like being welcomed into a world of other people like me that was existing in front of me, I just wasn’t able to or allowed to see it.  It is comforting to know that there are other friends of mine out there who are surviving their own battles with their own physical challenges.  It is comforting to know that I am not alone.

This post is for BB, HW, AW, BH, JW, SD, JC, CQ, EM, VT, LP, JG, KW, MH, IV, FG

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

Day 19: Are we there yet?

Almost done.  Almost done.  Almost done.

Today was the penultimate day.  I should have geeked out yesterday and called it the antepenultimate day.  Oh, this is what my English Literature degree comes to.

Yesterday, the antepenultimate day, I overheard one of the nurses arranging for hospice care for a patient with pancreatic cancer.  She used the word “nonresectable” which I think means it is inoperable.  My grandmother died from pancreatic cancer.  Hearing the word “hospice” was scary, but also reminded me how well I am doing.  How healthy I feel.  How far I am from giving in and going under.

Today I gave all the nurses cookies (that my brother made) and the URL to this blog.  I gave it to my massage/healer person too.  While it was happening, I wanted it to be private from them, but now that I am leaving, I want them to see it.  Ah… control.

I’m starting to feel like I’m already transitioning back to NYC.  I made a haircut appointment (my hair is wildly out of control.)  And I made an appointment with my NYC oncologist so I can learn how to do the self injection pen.

Wait, did you catch that… my NYC oncologist.  I’m so bi-coastal I have two oncologists…  LOL.

Some of the ways people responded to me telling them about my cancer

I have observed that there are generally four ways in which people responded to learning about my cancer.  There are variations, and exceptions, and etc.  But these are some generalizations that seem to hold true most of the time.

1. What their mother told them to say.

which goes something like this: “I’m so sorry to hear about your diagnosis. If there is anything I can do, just let me know.”  Sometimes it includes a line about how their mother, uncle, friend has also survived some kind of cancer, though usually people tell you that in person.

I don’t hold it against them; it is a scary topic, and they are clearly scared.  they would rather that it had not entered into their circle of life, but having entered they have to acknowledge it.

People who say what their mother told them to say almost never visit, almost never offer any real help, and never really talk about it again.

2. Honest speechlessness

The most honest responses have been the ones where people say that they don’t know what to say.  Something like this: “i don’t know what to say. i’ve been thinking about you a lot this weekend, and i have no idea how to go about this, or what to say so i dont sound insensitive or cliche or weird. so i just wanted to tell you, “i’ve been thinking about you a lot this weekend”

3. The Medical Professional

This has only happened once or twice, but it comes exclusively from trained medical professionals, and it goes something like this: “Your experience with this disease is unique, and only you can know what this period of suffering has been like, but I wanted to reach out to you to express my respect and support for you.”

4. The Pragmatist

The pragmatist says one thing: “When can I come over and what can I bring.”

First Hours

I’m trying to piece together what happened those first hours after I found out.  I’m going through my outbox, and saw this email to

Feb 22, 2008

i think i’m okay, but i kinda dont want to be alone tonight.

i haven’t cried, but feel it coming on.

i have a stupid  alumni interview at 6pm.  i’ll keep it short. i’ve held it together so far, and will prob keep it up through the interview.

when is the yoga class tonight?  the 8pm one?  i might like to do that, to distract me and beat the shit out of me.

m

Needless to say, I didn’t make it to yoga.  I didn’t make it to the alumni interview.  I ended up walking down 21st st calling my brother in tears asking him to find the phone number for the coffee shop I was going to meet this young college applicant for this alumni interview.  I remember calling and begging the too-cool-for-school barrista to just look for a yound woman arriving at 6pm like she was there for an interview.  I think I said “I have had an emergency.”  I hadn’t graduated to “medical emergency” yet, nor from there to “I just found out I have cancer.”

K was the first to call in response to my emails out.  She was doing a good job of remaining calm, though the layers of meaning were huge for her.

  1. I had just learned that her mother died of cancer when she was 7 or 8 (I forget)
  2. she had just gotten off the phone with the director of the melanoma foundation of New England; she was writing an article on Melanoma for one of the womens’ magazines she freelances for.  She quickly quoted to me the stats that Melanoma is actually the most common cancer for ages 25-40.  So it was for naught that I had been feeling my balls at my dr’s behest for all these years.
  3. She has lost people/partners before, and has a real thing about it.

But she remained calm, and told me to leave the studio.  Leave the studio.  I was at the point where I could not make any decisions.  So I listened.  I left the studio.  And went to S&E’s apartment.  I don’t remember what happened there, but I probably cried a lot.  I really can’t remember.

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.

m