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.

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.


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.

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.

Day 13, the happiest I’ve been

I’m the happiest I’ve been in half a year.  For a number of reasons.  The advice/counseling I got from the Naturopath on Monday has really helped.  It is a mental game, and as long as I stay tough mentally and take care of my body, I am doing much better.

It helps that they also reduced my dose after the break I took because my liver function was too elevated it.  They dropped it from 20 MIU/m2 to 13.3 MIU/m2.  I learned about what the whole MIU/m2 thing is too.  They give me my dose based on the surface area of my body(!)   So, for every square meter of surface area, I am now getting 13.3 Million Units of the Interferon drug.  I am getting 28MIU, so I guess I have a surface area of 2.10 m2.  I guess they calculate that from my BMI.

And then when I got home from my physical therapy & yoga my former roommate and best friend P was sitting on the deck chatting with my mom! He came as a surprise visit.  It was awesome.  I was on a high.  He took me to get my infusion.

Then we went on a hike on the Marquam trail.  It was at dusk.  Beautiful.  And it was for 45 minutes, and we were walking really fast.  I sweated a lot.  I think it was the most exercise I have had since February.  So we got to the top of council crest, and waited for one of my parents to come pick us up.

As we were sitting there waiting for a car that should have been there sooner than it was arriving to figures in profile come walking directly towards us.  One of them is walking very intently, and the profile looks really familiar.  And I realize it is my dearest friend x from LA, and then i realize the other person is my best friend from LA KM.  And i was so shocked, and amazed, and confused, and elated.  I turned to P and asked him something like “what they hell is going on?” and he said “oh, I was just the decoy” and I threw him to the ground with a yell of happy betrayal.  And then I tackled x to the ground in a hug, rolling around in the grass.  And then got up and tackled KM to the ground and rolled around.  And then got up and was so happy.

My brother comes tomorrow night.  And my dear friend LK is coming up from Santa Cruz in a totally separate plan.  I thought it was going to be a good weekend because I was going to have one friend in.  Now I have 4 plus my brother!  Amazing!

i am the happiest I have been in half a year.

note: this is the first post I have tagged “happy.”  Its a new tag.

Interferon reboot: day 11 or day one again

It wasn’t as bad as the first day for sure, but I did have the chills/fever pattern. I was so worried about my liver function being low enough, I didn’t take any preventative Tylenol (as I had been the first two weeks), so I immediately felt the effects even as I was getting up from the infusion chair. And definitely on the way home in the car.

When I got home I took some Tylenol and Advil, and crawled into bed with all the covers and the heating pad. My muscles were on the threshold of contracting and doing the chills/shake thing that Bob told me about. But I didn’t go into shakes. I hugged the heating pad around my chest, slept off the chill for an hour and a half, and woke up sweating with a mild fever feeling. And hungry.

Following my Naturopath’s advice, I ate a lot, exercised a bit (15 minute walk), and am about to go meditate. I feel much more in control mentally. And, of course, I am control minded, shall we say. (Appending the work “freak” just seems unsavory in this context…)

Naturopath 2.0: goals and strategies

i got enough sleep before the meeting with the naturopath.

basically it was kind of like therapy.  except from a cancer survivor.  whose whole deal is finding ways to win the mental war and compensate for the nastiness of the physical war in the body.

he gave me B-12 vitamins.  b/c I don’t eat meat, which is mostly true.  (did you know that pescatarian was added to the dictionary today? So was Fanboy!!! — http://edition.cnn.com/2008/US/07/07/new.dictionary.words.ap/index.html)  and it will also help my liver function

and we talked a lot about goals and how i need to overcome this mentally.  it was a lot of information all at once. and it was just the same information as the last time, but more specific.  lets see if i can remember:

1. I personally have to take on the mental battle.  The drs are doing the chemical stuff, but I have to win the mental battle.

2. I need to set goals.  Part of the problem is that I am just reacting right now.  Reactionary.  I feel bad, I feel good.  I need to set short term and long term goals.  So I have something to aim for.  My long term goal is full quality of life during the 11 month treatment period.  My short term goal is to make it through the next week feeling good, with more energy, and more calmness.  And to have liver enzyme counts that allow me to finish up the drugs.

To accomplish the next week’s goal he told me I need to eat more (whatever I can eat, whenever I can eat), continue to exercise, take my B-12, and I forget the rest.  Oh, meditation.  Meditation.

I said to him that meditation seemed to work, but I didn’t understand why. And he said something that was kind of stunning, but I kind of forget what it was.  maybe it was kind of mystical like ‘maybe you know more than you realize.’

Anyway, it was really early in the morning, and it was so much information, but I forget.  The next meeting is after noon, so I’ll be in better shape.

The other thing he kept saying is that I have to move through this.  I can’t be passive.  I have to move through this, and arrive at a state where I am at peace with the cancer.  Because, as he says, I will never get to the point where the cancer is a non-issue.  He is 19 years out, and he still thinks about it.  As he says, this is now version 2.0 of my life.  And there is no going back.  But there is making peace.

And if there is no making peace, then I play victim.  And that is lame.  I don’t want to play victim.  Laaaame.

i think there was a bunch more, but that is what i remember now, two hours later.

now it is time to leave to get my Interferon.  week 3 begins.  hopefully this will go easy.  and my liver will stay happy.

What’s in a word OR Eating the Cancer

Yesterday I went to a Naturopathic Doctor who works at the Complementary Medicine center at the Cancer hospital I’m getting treatment at.  My mother pushed for it.  I didn’t really care, though felt like I should do my due dilligence.  My father was not consulted.

There are a few strong memories I have about my father when I was young, especially discussing medicine.

My favorite was when my father was drinking a coca-cola while driving, and in all earnestness I told him not to drink and drive.  I really thought that was what all those advertisements were telling me.  He thought that was a hoot.  I’m smiling writing this.

I also remember asking him what a “shrink” was, and he explained that a psychologist was someone who talked to people about their emotions, that a psychiatrist was someone who went to medical school and proscribed drugs for people, and a psychoanalyst was for people who believed in some out of fashion ideas that someone named Freud believed in.  He didn’t tell me what those ideas were, for fear I would kill him and run off w/ mom (LOL); I didn’t hear about them until we read Oedipus Tyrannos in 9th grade and our teacher had to explain to our dumbfounded class of 15 year olds that this Freud guy really did think everyone wanted to off their dad to get their mom.  And some other stuff…

Anyway, the real story here is when I asked him what a Naturopath was.  Or maybe I asked what a Chiropractor was.  Either way, the answer was pretty definitive: A Dentist is someone who did not get into Medical School, a Podiatrist is someone who did not get into Dental Schoool, a Chiropractor is someone who did not get into Podiatry school, and a Naturopath…  don’t get me started.  It was something like that.  So typical of an MD.  To be fair, I think my father has mellowed out a little bit about these issues over the past 20 years, but he is still an MD.

So we went to see the Naturopath yesterday morning.  His only availability was at 8:30.  One of the first things he said was “you look shell shocked.”  True, true.  He was kind of funny, and personable.  He asked me to give him the history of my cancer.  Then he told me about his experience with cancer: he was a 32 year old filmmaker and he was diagnosed with testicular cancer.  His experience beating cancer and dealing with the MD world inspired him to go back and become a Naturopathic Doctor to help people make it through cancer treatment.

He gave me a couple of supplements: some “pro-biotic” that replaces all the good stuff in my digestive tract that the drugs remove, so I can have “good poops” as he said. (grinning.)  And he gave me some flower essence drops that supposedly help reduce anxiety.

But what he really gave me were a couple of ideas.  Pointing at his head, he said “Its all up here.  Either you eat the Cancer or it eats you.”  He said several variations of that idea.

What really made it click was when he said “You know, if it makes it easier for you to think about it this way, Interferon isn’t really chemo; it is an immune system stimulant.  It works on completely different principles.”

So here we were again, back at the is it or isn’t it chemo.  But this time I found that thinking of it as NOT chemo made it something I could digest and move on.  I’ve been feeling better since then; emotionally and physically.  Maybe it is just that point in the treatment where I have built up enough tolerance for the drug that I can deal.  Maybe I am beginning to learn how to eat the cancer.

First day chemo report

my aunt (who has been doing chemo for two years for lung cancer) told me to “visualize building walls”

i went into this part of the hospital where they have a lot of big kinda-comfy chairs, they hook me up w/ an IV and put in 1 litre of saline solution. towards the end of that, they piggy-back on the Interferon.  all told it takes about 3 hours. a lot of time

then i went home and waited for “it” to hit, whatever “it” was going to be. “it” ended up being headache, and really feverish joint aches.  followed by chills, and then a nasty fever w/ sweats. it totally sucked around midnight – chills alternating w/ fever – sweated out my bed.  but i feel today just kind of hungover.  supposedly the chills drop off and the fatigue builds over time.

today’s thinking: i can do this

when i went in i did the breathing meditation i was working on w/ my massage/healer person.  i did it to brian eno’s music for airports, which is probably my ‘desert island album.’  it is nothing but perfectly syncopated arrhythmical tape loops of pianos and other synths.  and so calming.  though some people cant stand it.

then i switched to the first half of the jack kornfield meditation for beginners cds that a fam friend gave me.  i did the breathing meditation.  and mindfulness.  and then right when it ended and he rang a bell and i opened my eyes, the nurse was approaching to talk to me.  timing = perfect.

she stopped by to tell me about the chemo drugs.  the interferon.  its interesting.  in nyc they never used the word chemo.  here they only use the word chemo.  i can’t tell if it is some kind of technical/chemical differentiation, or a philosophical/emotional diff.  like the nyc’ers are all about denial and pretending it isn’t what it is.  and pdx is all about just calling it what it is.  but isn’t that a flip for what i would expect?

she kept telling me how expensive the drugs were.  each daily dosage is $9,000.  insurance covers it.  but $9K.  crazy.

yesterday, about 3 hrs before i went in, something clicked.  and all of a sudden i had no more anxiety.  all of a sudden it was ‘game on’.   like i felt 3hrs before a big soccer match, or a ski race.  i was prepared, calm, collected, and ready to kick ass.  i was walking on the balls of my feet w/ a spring in my step.  bring it on.

i used to be a competitive ski racer (in college.)  skin-tight downhill suit. helmets.  and very very fast descents down icy icy steep slopes.  i was pretty good.  i never won anything but considering i was racing against ppl who were ex-world cup racers and ex-olympians (25 year old romanians and czech olympians who came to obscure US colleges on skiing scholarships), it is understandable why i never won… LOL.

ski race pr0n attached below.  this is mbe 10 yrs old.  someone sent it to me about two weeks ago. first pic i have ever had of my skiing, really.  many were taken, but none got to me.  here it is 10 yrs later…  its hard to tell b/c the shutter speed was so high, but i was prob doing about 45mph at that moment.

off i go for day two.  it will be at 230 every day, for the next four weeks.