Tag: endurance

Today is my Cancerversary

KICKING CANCER'S ASS, 2008-2009

Happy Cancerversary

I was diagnosed with Melanoma one year ago. O took me out for a fancy dinner, complete with a marzipan scroll that says “Happy Cancerversary” on it. And she gave me this awesome trophy. The trophy has a special story. It was one of the props from when Lance Armstrong was on Saturday Night Live. I don’t thing it was actively used — maybe it was an alternate, or just in the background, but it was made custom for Lance. So say what you will about the fact that he was better at covering up his doping than all the other riders who did the same thing, but got caught: the man kicked cancer’s ass. So the base is enscribed “KICKING CANCER’S ASS, 2008-2009.”

It is crazy to think how different life was a year ago. How much I’ve grown. How much violence my body has endured. How drug addled I am. And how much I feel like a different person.

The Cancer Card (Literally)

In late December, inspired by Adrian Piper, I made a card to help communicate to people what was going on with me. Actually, I made two, but I have only printed one. One says “I HAVE CANCER / DO YOU MIND / GIVING UP YOUR SEAT / THANK YOU.” That one is for the difficulty of trying to get a seat on a crowded train – because I *look* fine on first impression. Closer inspection indicates otherwise…

The other one says “I HAVE CANCER / THESE ARE SIDE EFFECTS OF THE DRUGS / THIS IS NOT AN ATTEMPT TO START CONVERSATION / TALKING ABOUT THE SYMPTOMS MAKES THEM WORSE.” This is for when I am having a dysesthesia attack, and am scratching and writhing about. People stare at me, which makes it worse. Or they get up and move to the other side of the bus or train. This will maybe make them realize I am not dangerous, crazy, contagious, and/or a terrorist (LOL).

For the most part, I try to ride the subway on off peak hours. I’ve had to take the subway in for a few 9AM appointments and meetings, and things get crazy.

What is interesting, is that so far the “give up your seat” card has not worked at all. If anything it has been a hinderance. I think people think I am trying to collect alms from my poetry or something. People don’t even look at me, or they just stare.

The only good thing is that it alleviates the famous Stanley Milgram effect where the person asking experiences huge anxiety.

So far one younger Latino man got up for me. One white man didn’t but when the woman next to him got up he got up too and they both stood. Since then I have had three white men shake their heads at me. I thought I would as men because they are tougher or something. But they seem to largely be unsympathetic assholes. Which is the reputation of the NYC male.

When they say no I repeat to them my situation. It just goes right through them. Today I looked this williamsburg dude in the face after he said no twice and called him heartless and selfish. Maybe I need a different card to give out. One for people who say no. That lists all of my symptoms. How long my treatment goes on for. My prognosis. Etc. About how I may look sound but I’m not. I am a grandma inside. Weak, tired, carrying more drugs, ice packs, and healthcare paraphanalia in my bag than clothes or books.

This city is heartless.

AN UPDATE:

6 weeks later, I have given up on the card. It is a nice little bit of poetry, but people think I am trying to beg for money. I have developed a new strategy. It is two part: 1. avoid taking the train when there isn’t going to be a seat on it. 2. quickly identify the youngest person who is not asleep, and who is not listening to their iPod and ask them. The other thing I have started to do is to say “I am sick” first. Then “I have cancer, it is hard for me to stand for long periods, can I please have your seat.”

This has had a pretty high success rate. Often people seem resentful, but they do it. I said it all to one dude, and he gruffly responded “whaddayawantmetodoaboutit?” And this glammed out black chick standing up next to him with crazy hair wearing a remarkable fur coat and heels immediately said “he needs to sit. get up and let him sit.” and he did it. resentfully.

The hardest part, actually, is getting on trains that are so cramped during rush hour that I can’t even make my way to find someone who I could ask to get up. I barely make it through those rides. But I make it, and I’m proud of that.

And then there was the time that I had just negotiated for a seat. It was right next to the door. And this woman got on and stood in front of me. My face was right at her belly level, and I noticed she was just starting to show a pregnancy. After maybe 15 seconds she said “can i have your seat, or i’m going to be sick.” I looked at her, confused, regrouped, stood up, and said “you may have my seat, but you should know that I am probably the only person on this train who is more sick than you.” I went and stood in the corner. That sounds really passive aggressive, but that wasn’t how it came out. It was more of an exasperation with entitlement, and the Milgram effect — even though I had sought out and negotiated for that seat, I was still willing to give it up immediately when asked.

Fingernail symptoms

fingers1

fingers2

My fingernails are growing in like soft shell crabs, with only the thinnest of barriers between me and the world. The nails that were there before I started the IFN have a slight pinkish tint, and the transition from nail to no-nail is pretty rough.

You can also see the lesions and pitting in at my fingertips. The pointer finger is from zippers and buttons, the ring finger is from typing (especially pressing shift and command)

Half Way Point

I reached the half way point in my self-injections. 24 weeks done, 24 weeks to go. 72 injections.

I decided I want to go get the most expensive box of 24 chocolates I can find, and eat one every week for the next 24 weeks. Then (ever the pragmatist) I decided they might get stale, so I will get them in two rounds of 12. What is the most indulgent? Jacques Torres?

It has actually taken me nearly 10 days to get adjusted to the idea that I halfway, and that I have more of this behind me, than in front of me. It was really hard to feel that intuitively for a while. Now I feel it, and it feels good.

Of course, though, the last month, and the next two months are supposed to be the hardest ones. I can attest to how hard the last 10 days have been.

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.

More Drugs Please

I went up to the dr yesterday, and got my FMLA papers signed.

The other goal was to get some drugs to help with the dysesthesia attacks, as well as show him all of my lesions and bleeding sores, and other gross things.  I mentioned my dermatologist gave me something for my lesions which had helped a little bit, and another which didn’t.  He immediately asked “were they steriods” and i said I didn’t know, and he kind of got interogative with me, asking again “well, you should know if they were steriods.”  And I immediately went into a full blown dysesthesia attack.  its that confrontation, that conflict, that interogation, that possibility that I (the expert) might have made the slightest mistake.  In a healthier state, I could have had it roll off my back.  But not now.  The slightest confrontation over something as simple as a scheduling confusion sends me into dysesthesia land.  Which is why it is close to impossible for me to teach on the IFN.  I tried a little bit at the studio, and I just end up clutching my side shivering in a fetal position.

So in a sense it was perfect timing.  He actually got to see it happen.  And see that it was real.  (Maybe my subconscious produced it for him…)  He immediately went into support mode, telling me I was doing well, and that if I wanted I could take a week or two break.  But I dont want to take a break.  It just will delay the overall end point.  I only want to take a break if I’m too sick to take the drugs.  RIght now my WBC is at 2.5, and holding steady there.  It dipped to 1.8 after Banff, but has been steady at 2.5 otherwise.  3.5 is the low range of “normal” so I am still immunosurpressed, but I’m hanging in there.

If the goal was to get drugs, that was a success.  He gave me a prescription for Atarax which is an antihistamine.  Now that I look closer, it is just a higher potency of the over the counter drug I was already taking (Zyrtec). And it is ‘sedating’ so i’ll be more stoned and sleepy.  I’m supposed to give that two weeks, and if that doesn’t take care of the dysesthesia, I start taking Neurontin which is actually an epilepsy drug, which is now widely used to deal with neurological pain.  Frankly, the closest thing I can describe my attacks as, are seizures: I am not totally out of control of my body, but I loose a lot of control to the pain, I go fetal, and afterwards I am disoriented and kind of stoned.

The other thing that happened (in the midst of my attack, me trying to breathe and do meditation on the paper on the exam table, while my doctor keeps saying “you’re doing great”) is that I got my FMLA papers signed.  My “doctor’s note” so to speak.

We calculated out my treatment schedule, and if I take *no* breaks in treatment I will be done the last week of July 2009.  But considering I’ve had to take 4 weeks of breaks in the first 17 weeks of self injection, it is unlikely I will make it through the remaining 31 weeks of self-injection without having to take a break.  So realistically, we’re talking an end of August beginning of September final injection.  As the drug takes some time to work its way out of my system, my Dr has designated a 1 month recovery period, so he has me coming back to work after September.  E.G. October 1st.  I will more or less miss the first 5 weeks of the semester.  I’m working out the details of what that means.  sitting w/ my dr and counting out when I would be done forced all of this.  frankly i was very much in denial of the end date.  it seems so far away, i felt better not thinking about it.  but because it runs up against the fall semester, it is important to address

Midpoint / Birthday

I’m thinking of doing some Enron Accounting, and coming up with some framework in which my Birthday (Dec 22) is halfway through my treatment.  So I can have a party.

I just completed week 12 (of 48).  By my birthday I will be in week 19 of 48.  BUT if you count the 4 weeks of IV IFN I did, I will be at week 23 of 52.  Which is almost 50%.

Maybe I wait until January 15th, and then I will be very solidly  halfway through.

In other “halfway through” milestones, I’m in my 9th month of this.  And I have about 9 months left of the IFN.  So I am kinda halfway through *something* now.

Naked on the Street in SF

my body is kind of falling apart under the strain of the drug treatment. it is strange using words like lesion, immunosuppressed, panic attacks, etc, in daily conversation.  i am in CA right now and I wore a mask on the plane.  drs orders.  the only other time i flew, when i went to banff this august, i got more sick than i have ever been.

I’m getting all of these lesions on my “extremities.”  Apparently the drugs slow the blood flow to the capilaries in my fingers, toes, tongue, etc.  And I get what is called Acral Arethema, which are red spots that sometimes turn into lesions.

I know my white blood cell count (and it is always too low)

And I am making art with words

i have never felt closer to Felix Gonzalez Torres.

as if that was not enough fun, I have been having more and more heat and panic related pins and needles attacks.  it is like my entire skin rebels against me and i feel like i have excruciatingly painful waves of pinpricks all up and down my body.  these last for as little as 30 seconds, and as long as 25 minutes.  there are five things that i can do to calm the symptoms (in order of effectiveness and feasability): ice, binge eating (esp chocolate ice cream), meditation, watching-richard-pryor-et-all-on-youtube, massage, and exercise.

several times in the last few days i have had serious attacks on the street.  in nyc when this happens, i strip down to my undershirt, or unbutton my shirt all the way, or sometimes take it off entirely.  this gets me two kinds of dirty looks.  most people give me the “you are being indecent look,” and a few people give me indecent “i want you” looks.  both of them are so mislead.

but here in SF, no one gives a shit that i am sitting on the street with my shirt off, meditating in half-lotus.  i’m staying in the haight, so i’m just another street punk.  i’m a bit more well dressed, but when it comes down to it, people here are just so used to ignoring everyone sitting on the street, they just ignore me.

i discovered that i could get colder by actually lying down on the sidewalk, b/c the sidewalk stays quite cold.  so twice now i have pulled off my shirt, and laid down on the sidewalk for 5 to 10 minutes until the pins and needles have passed.  only one person noticed or asked about me. he was an older man (70+) who wanted to make sure i was okay.  i was in a nicer part of town at that moment.  he had probably been lying on the ground once, not okay, and had wished someone would help him.

it is strange having the afflictions of the old.  i am visiting O’s grandmother who just had some heart related medical flare ups.  she is tired a lot, and can’t drink anymore (a glass of white wine with dinner was her favorite.)  we are going to get along great.  we are both shell shocked, tired, and wish we could get drunk. but can’t.

but despite all of that, my spirits remain high.  i still have 8 months of this treatment (i’ve done 4 so far).  every once in a while i cry hard.  but this is good.  the rest of the time all of the other drugs, my meditation, and my own resilience keep me moving forward.

and there are things that make me happy: the book is almost done. (i’m pretty sure i’ve mentioned the book here.)  as in, all chapters should be submitted to the proofreader be EOD today!  it goes to the printer on wednesday. almost all the book-making work has been done by my assistant and a ex-nytimes InDesign expert i hired.  It is strange not being able to do the work myself, but i’m glad that it is being finished, as it is one of the largest sources of panic over the last few months.

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.