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.

Sweating it out

Exercise reduces your risk of cancer, via the nytimes:

Parsing the men’s activity levels, the researchers determined that, after controlling for cigarette smoking, fiber and fat intake, age, and other variables, the most physically active men were the least likely to develop cancer, particularly of the gastrointestinal tract or the lung. Even more striking, the intensity of the exercise was key. The more arduous it was, the more protective it proved. Jogging was the most strenuous activity studied, fishing among the least. The men who jogged or otherwise exercised fairly intensely for at least 30 minutes a day had “a 50 percent reduction in the risk of dying prematurely from cancer,” says Sudhir Kurl, medical director of the School of Public Health and Clinical Nutrition at the University of Kuopio in Finland and one of the study’s authors.

I’ve been riding my bicycle for 30 to 60 minutes for 6 of the past 7 days

Less than 24 hrs

My last injection is in 21 hours.

I shouldn’t feel the side effects lift for at least 24 to 48 hours after the injection, but today felt a lot easier than the previous few weeks. I woke up feeling good, I had a kind-of-big meeting during the day (I haven’t had a meeting in weeks, if not months). Maybe I just had a good day.

But I feel how close the end is. That sounds super cliche and kind of sentimental. But I think that my mind has taken over, and knows it is going to be released from this cycle of… (think of non-cliche word for pain and suffering and fail…) …pain and suffering and it is kicking in the endorphins, or whatever, to get me through the last tiny little bit.

Tomorrow we are going to have a few people over for pizza, i’m going to do my last injection, and then we are going to pop some champagne to celebrate.

I am going to go to sleep, and wake up to the rest of my life. That sounds cliche, and maybe even ominous, but I’ve been waiting for this for 18 months now.

Down to 15

I think I am starting the countdown a bit too early. I shouldn’t really start counting like this until it is single digits. Two more weeks, and it is 75%.

My body is really feeling it these days. Very tired. My fingernails are mostly gone. I’m really achy. Headaches all the time. My feet are starting to hurt.

Starting to ride my bicycle again. I can make it two laps around the park (6.5 miles). Each time gets a little easier.

I can’t wait for this to be over.

Back from the road

36 weeks done. I have 16 weeks left. 70% done. My mom is coming tmrw, which will distract me for a week. I’ll be down to 15, the last 3 or 4 of which will be in Portland. In my rationalization and fantasy, that makes it only 12 weeks left of solo, non-distracted injection. Of course this is a fantasy: I’m still months away, but it feels closer. I think that after week 39 (75%) I will feel a solid “last lap” feeling.

I was on the road for the last week, giving lectures with my studio mates. I did a lot better than the last time I attempted this in November. That said, this will be the last time I fly before I go home to Portland in July to finish my treatment. I did really well, but it was hard enough.

Some things have changed over the last few weeks that I have neglected to report. Most importantly, I’ve gone off the Atarax, which was controlling my dysesthesia, but also making me stoned, irritable, and sans-libido. I was in at my dermatologists, and he said “well, if you really think it is the Atarax, why not stop for a few days; you should feel the effects immediately — its not something that builds up in your blood stream. If the dysesthesia is too strong, you go back on it.”

Amazingly, I was fine. The three months on the Atarax had got me adjusted to knowing when and where i was most likely to experience an attack, and to avoid those situations, and controlling the reaction through meditation when it was unavoidable. So I have had to concentrate harder at times, but I have been rewarded with a better mood, a lot more energy, and a libido that is still suppressed (from the IFN) but a lot stronger than before.

I had several doctors appointments about 4 weeks ago. My CT scans are clean. My Oncologist continues to tell me I am doing better than most any of his patients. It is small relief, considering this experience feels so bad, but I wonder about those patients who are doing ‘worse’ than most of his patients.

The day I was in I had to wait 4.5 hours to see the doctor. I’ve gotten really good at being patient in doctors offices. I was told the doctor was running late when I signed in, and after about 45 minutes I checked in to see whether we were talking a few more minutes, or a few more hours. Mostly I wanted to know whether to pull out the laptop and start working. I was told that it was most definitely a laptop day.

The way the nurse phrased it was “There are some very sick patients here today.” She said it under her breath, so as to not let it spread too far beyond our little micro-conversation-sphere. I found out that one patient had to be admitted before I arrived at 10am, and several other patients were admitted during the 4.5 hours I was waiting. Apparently the doctor was away at a conference, and these older patients didn’t go to the ER when they should have, as their skin grafts became infected, or they got really sick with a pneumonia, or what have you.

Knowing that there are patients in the office who are likely dying gave me an incredible patience with waiting. I could have sat there for the whole day, patient and content, meditating on the wellbeing of those admitted patients, and grateful that I am strong enough to wait with patience.

One of the interesting things the doctor told me is that along with the reduction in physical changes that comes with month 10 (i’m still in the physical changes zone, but last month was much worse) comes an increase in anxiety and psychological effects. So months 6-9 are the hardest physically (all kinds of body falling apart.) But months 10-12 feature an crescendo of anxiety that doesn’t get better until after the last injection, and then, two or three days later, it disappears. Invariably, the anxiety vanishes within a week of the last injection.

I doubt that all the physical symptoms will go away quite so fast (my fingernails continue to disintegrate, i have Reiter’s lesions all over my legs) but it is nice to know that a good part of the mental stuff will go away fairly quickly.

A Letter to K

A letter to K, who was upset with me about my visit last November, but hadn’t said anything about it to me since.

jesus, k.

i’m sorry. i had no idea. i’m sorry.

i’m really caught off guard by this. stunned. totally reeling, from the content, from the tone. trying hard not try cry.

your friendship means so much to me, that it hurts both that i hurt you, and also that you didn’t tell me. these are small things that have built up into serious anger. I don’t even know what ‘startlogic’ is?

and also, i felt so grateful for your patience with me. which makes it all the more painful to realize you were angry at me for it. i was a lot more tired and sick than i thought i would be by the time i got to LA last November. each month provides new difficulties, and that was the month I spent rolling around on the ground, ripping my clothes off to try to cool off on the concrete. I got back, got a name for it (dysesthesia), and a drug for it, which then killed my libido entirely, and dulled the dysesthesia so that I can leave the house without being afraid of a seizure like episode.

i hate not being able to be completely independent. i hate the fact that my fingers have so many lesions on them that I can’t do my own dishes, and it hurts too much to put gloves on and take them off, that I have to save up dishes for a ‘gloving’. i hate that i have no appetite, which makes me crash, which makes me cry. i hate that i have lost my libido, and what that has meant for my relationship O, someone i really care about, who rationally understands it is chemical, but who feels rejected nonetheless. i hate that i have lost half of my hair. and i hate that i have to ask people for their seat on the subway or i won’t make it through the ride, and i more than anything i hate being told to fuck off by my fellow subway riders. my vision is going (i’m seeing double a lot, for a while i was hallucinating), my memory left a long time ago (vis-a-vis startlogic), i am starting to experience real chemical depression, (as per all the prognoses of the drug treatment.)

yesterday was the one year mark from my diagnosis. there is no question this has been the hardest year of my life. the cruel irony is that it is something i have to endure myself (it is a very lonely affair, and only people who have been *really* sick get it) and yet, am completely dependent on everyone around me, for things i can’t do, for thinks i would normally be able to do, for understanding.

i have an intern who has been working with me for two months. she is dedicated, works remotely half of the time, and is doing a great job translating the  book into Spanish. Today I realized I never told her about the cancer. It was a really awkward moment. I guess i thought that I was going to tell her, or that I already told her, or something. I don’t like to tell people immediately, both b/c of pride, trust, and a desire for them to realize that I am normal. or rather really trying hard to pretend like everything is normal. but when i told her, all of a sudden she realized why I kept coming in late, and somedays couldn’t even make it in at all. why I was getting my schedule all confused. And why i have so many drugs on my studio desk.

i’m trying so hard to act like i am normal, but i’m not. i’m on a “highly toxic” treatment. it is so hard to look normal from the outside, and be falling apart on the inside and the edges. and i’m not just talking about the way the drugs fuck with my emotions, and the ensuing chemical depression, but having my body fall apart from the inside. i have so many holes in my tongue i can’t eat anything without pain. i have a permanent gash in the back of my mouth near my jaw. when i eat, i leave bloodstains on my napkin at the edges of my mouth. half of the time i can’t wear in-ear earphones because the lesions in my ears keep getting re-infected. My eyes flake off scales of skin.

but i’m trying so hard to act like i am normal. maybe too hard

i’m really scared about this coming trip. maybe that is why i am reacting so emotionally to this. after the last travel, i cancelled all travel excepting this trip to CAA. i’ve turned down speaking gigs in berlin, croatia, argentina, los angeles, university of iowa, etc. b/c traveling is so hard. traveling is hard just getting to and from my studio and my apartment.

i had lunch with an artist friend last week. i knew he had been sick a few years back, but i didn’t know what. something thyroid related. turns out he had thyroid cancer. while they were removing the thyroid they found it had spread to all the lymph nodes in his neck — out those came. it was so comforting to meet someone who had been dealing with all of these things. I have found people here and there who had been diagnosed, but usually at such an early stage that it was just one minor surgery. It was nice to talk to someone who had something more advanced, like myself, but who is living his life.  His condition requires a little bit more maintenance than mine will be at three years out, as I did not have any organs removed, but he gets it.

He was *really inspirational* for me to try to chill out, he has basically stopped traveling, or speaking publicly, keeps his studio in his apartment, and doesn’t go out for social events. And despite all of that, his career is soaring.  he helped me think about trying to not pretend like i am normal. to sleep in all day because that is what my body needs. to say no to things. more often. and to rest. because it is my life on the line.

I’m sorry if this is a lot. A big response. i don’t want you angry at me. i don’t want you to hold a grudge against me for something i either don’t remember, or couldn’t control.

i want to stay with you because i want to spend time with you. i want you to meet O. i could stay at my aunts, or cousins, or CHP has even offered her couch. but i don’t get to see you very often, and these days, with travel so much harder for me, i see you even less.

if there is anything specific i can do to avoid impinging on you more than a normal visit would, please let me know. can i order groceries from a Fresh Direct style delivery service? I’ll take you out for dinner every night. i’ll rent a car, if you think that would help. i will bring lots of cliff bars.



I love you dearly K, and I don’t want you upset with me,