Month: August 2008

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

Life will be better in 11 months

O mentioned that she was imagining what my life was going to be like in 11 months when the drug treatment has become so routine, and then is over.

i think my life is going to feel so awesome and easy in 11 months

like:
i wont have to shoot up
i’ll have lots of energy
i will have made it through
i will have an appetite
i will eat anything i want
i wont have to take anymore anti depressants and anti anxiety drugs (which make it so I can’t orgasm)
i will be able to have all the orgasms i want
i will want to eat more than watermelon, smoothies and watermelon.  oh and frozen pizzas
oh, life will be better in 11 months
I hope.
PS I just addd the “hope” tag

Just how hot the subway ride is

Subway platforms have been the bane of my return to NYC.  They are so hot.  They compelled me to go get the ice vest.  Today, the NYTimes writes on the heat on the platform:

This week, I bought a thermometer, hopped on the F, and rode back to Second Avenue, where the temperature on the platforms ranged from 97 all the way up to 101 degrees — all while it was only a relatively mild 86 degrees above ground.

The thing missing from the story is that it is always really humid down there.  Probably from all the sweat evaporating off of the heat struck riders standing around waiting for the next train to arrive.

I feel the sleepy undertow again

It is kind of amazing to feel the side effects of the Interferon coming on again.  Whereas before they were confusing, surprising, chaotic and alarming, now they are like the return of an old friend.

This morning I had my first “I don’t feel like eating anything in the whole world” feeling.

This evening I felt the sleepy undertow.  I lied down around 6pm, and felt like I could just go to sleep.  I felt like it was going to be so hard just to get myself up.  I had a friend coming for a walk at 630, so I forced myself to get up.

So all my old friends are back.  Fevers, Loss of Appetite, and Exhaustion.  Side effects make constant companions.

I will fight them, though.  I will fight them with water, food, exercise and meditation.

I sound rediculous, right?  I’m just reminding myself.  I guess I don’t really care what I sound like b/c I know it will work.

Feeling better this morning

i hope i’m not speaking too soon, but this morning i just feel like i am a little bit hungover.  like three glasses of wine hungover.  i slept through the night.  i shot up around 1am.  its 11am now.  i slept 9 hours.  if i had chills and fever i was able to sleep through them.

It was relatively cold outside (74 or so) so S proposed not using the AC last night, and just having lots of fans.  So it was in the high 70’s.  Maybe that helped.

Tired, achy, and sick feeling, but this round was a whole order of magnitude better than the first round.

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

Post Injection: Rough two days

The last 48 hrs have been pretty rough.  I woke up Tuesday feeling like had done a really hard workout, then drank the better part of a 12 pack.  My whole body ached, I had a pounding headache, i was nauseous, and I felt like it was all going to get worse if I moved.  But I moved.  I got up.  I slowly felt a little better.  But the headache never went away (despite some Codeine), and the chills and fevers came back in the evening.  I did manage to sleep last night, but again, woke up feeling like crap.  I felt better mid day.  This evening I’m panicking about the injection I have to give myself.  I’m scared.  I spent an hour on a park bench wearing my ice vest alternately trying to meditate and succeeding in crying.

Spoke Too Soon: really bad night

it seemed like it was going to be an easy round this time, but i spoke too soon. I went through a mild round of chills and fever, felt better, and went to sleep around 11, drugged and seemingly peaceful.

 

I woke at 130am with the worst chills I have had yet.  Much worse than the first night I started the much higher IV dosage. I tried to get warm with the heating pad and relax as best i could, but my muscles were on the threshold of spasming and going into shakes.  Shivering at the top of the stairs, I called S for help.

He turned the AC off, brought luke warm water, warmer sweatpants, a winter down blanket, arranged the heating pad, and held my hand until I/my body had calmed down enough that i was not shaking anymore.

Sometime later I realized I had started sweating. It is amazing how I can’t notice that liminal moment when I transition, I only notice once I am already overheated and feverish.  I pushed all of my warm stuff off and crawled out of bed.  I think S was there by the time i got out into the living room.  AC back on, ice packs on the chest, drinking cold water.

The fever was still going strong when S went to be around 3am.  I tried to get to sleep.  i took even more sleeping drugs.  my mind was racing, and my body was aching.  i tried to meditate.  i tried to do guided visualizations.  i listened to Music for Airports. and still I was sweating, and tossing and turning with no real chance of sleeping.  It reminded me of the second day of IV infusion, when I couldn’t sleep all night. 

As the sun started to come out, sometime before 6am, I thought I might try to sleep on the couch.  sometimes moving into a new bed helps me.  its like i think i’m starting the getting-to-sleep process over, with a clean slate.  i pulled off the cushions, brought out my pillow and sheet, set down my liter jar of water, and went to put away my ice pack.  coming back to the couch i forgot about the water, and kicked it over, spilling a liter of water on the floor and splashing it all over the sheet and cushions.  it was too much.  i just sat down on the wet couch and cried. 

it felt good to cry.  i was really frustrated.  and i couldn’t really express it.  and i haven’t cried in some time.  and the crying was maybe the thing that made me tired enough that no matter what, i was going to be able to sleep.

I finally slept around 7am.  I woke around 1030am. i feel like i got hit by a truck.  or maybe like i did a hard workout, then drank a six pack on an empty stomach.

what i don’t get is why there were two waves of chills/fever, why the second one was worse, and why the self injection seems to have such stronger side effects, at least on the first night.  I guess mainlining any drug is the best way to take it.  Maybe that or snorting it.  LOL.

so, my mind was racing the whole time.  i kept remembering things i needed to do.  and ideas i had had but had forgotten, and questions i had, and thoughts i wanted to remember.  so i wrote them down in the book O gave me.  in the dark.  my handwriting is bad enough when i can see what i am writing.  check out what it looks like when i can’t.  I think i will be able to decipher these runes.  I think so, but it will take an effort.

Insomniac Notes 1

Insomniac Notes 2

 

Self Injection Day 1: I learned how to shoot up!

The calm surrounding restarting the drugs evaporated about two hours before I had to head up there.  I started getting headachey and overheated.  I tried everything to make it go away (eating, drinking, pain killer.) it wouldn’t go away b/c it was psychosomatic.  This was happening a bit in PDX. My Dr there explained to me that it was a very well documented phenomenon that chemo/interferon patients get psychosomatic symptoms *before* they go to actually get the drug.  So chemo patients will start puking in the morning before they go to the hospital for chemo.  In my case, I got headaches, feverish and even more tired in the hour before I was going to leave for infusion.

My appointment was for 5pm.  I got there 15mins early.  But when I arrived at the office, it was like an episode from the twilight zone.  All the receptionists were different, they didn’t know the nurse practitioner I was there to see, they didn’t my Dr’s Physician’s Assistant, and they didn’t even know my doctors phone number. Apparently this office is used by different doctors each day.  Rather than have one set of receptionists and assistants, each doctor has their own set of receptionists and assistants.  I guess they just sit in a cubicle the rest of the time answering calls and scheduling appointments.

So I call up to the receptionist who is in her cubicle, and she says that she will page the nurse and send her down.  15 minutes later I call back, but it is 5:02 and the call goes straight to the message system.  The twilight zone receptionist leaves.  Doctors leave with their bags. You can see where this is going.  Knocking on doors I found someone who knew what I was talking about and who i was looking for.  He made some calls, and actually spoke to her: there was an emergency in the chemo clinic, but she would be down as soon as she could get there.  

About an hour passed.  I was starting to get more psychosomatically symptomatic.  Plus I was getting tired and hungry.  Right when I was really ready to walk out the door I decided to try the open-the-book-when-waiting-for-the-bus technique.  Right when you give up on the bus coming quickly, sit down and open up your book to read, the bus inevitably shows up before you finish the first page.  Its like Law of Nature.  So I announce that to S, who doesn’t quite get me, and I go turn on one of the computers in the waiting room.  They have two public computers to keep people from getting too bored.  And sure enough, right as the first little windows flag shows up in the boot cycle, the door opens and the nurse walks in.

After all that waiting, the injection was really easy.  I’m glad I got instruction, b/c I would have screwed some things up.  I would have pushed the needle in too far.  And not done it at the correct angle.  As is, I didn’t really do it at the right angle.

Pushing the needle in is painless.  As in, I couldn’t actually feel the needle enter my skin.  It was weird that way.  Injecting the IFN stung a bit.  I had to do it slowly.  I did the first half, then I did the rest.

After I did the injection I had this 5 minute spurt of energy, optimism, and other kinds of good feelings.  It was partly b/c it was over, and it was soooo much easier than I thought it would be.  But it was also probably partly chemical. I’m sure there were a lot of endorphins, or adrenaline or whatever that my brain pumped out when my brain groked that i *really* was about to stick a needle in me.  It was so weird to be looking down and think “I’m going to stick this needle into my stomach…”  and then to do exactly that.

Train ride sucked, but not that bad.  I got the headaches for real right as we turned the corner to the apt.  I got some chills, but not that bad.  I should transition to a mild fever shortly.  But overall, not so bad.  Not as bad as restarting.  Which is interesting because I am at the same dose that I was at for the second two weeks of IV, I just take it 3 times per week, rather than 5 times.  I guess the body doesn’t absorb as much when the IFN isn’t mainlined into the vein.

Calmly, I start my self-injection tomorrow

I start my self injection tomorrow.  Strangely i’m not nervous.  The last two times I started the drugs I was in a real panic.  The initial start had me panicking 2 weeks out.  I panicked for two days before the restart after I had to take a week off on a drug holiday.  But this time I am barely giving it a thought.  Maybe that means its denial.

The drugs have to be kept refrigerated. I have the drugs, and I have to keep them them cold on my trip up to Columbia Presbyterian.  I was looking around the house to find something to keep them insulated.  I thought of slipping it inside one of the ice pockets on my ice vest, but I’m afraid that it will actually freeze the drugs, which I have been told ruins them.  Or maybe it just breaks the needle.  So I settled on putting it into a metal coffee travel mug.  I was inspired by stories that I have been told of the pro cyclists around 10 years ago who were all doping, and were toting around their needles inside of metal water bottles.  Apparently the needles would clink back and forth making noise.  And everyone was doing it.  So everyone had a clinking metal water bottle.  So off I go tomorrow with my clinking coffee mug.