GROINSTRONG

it is a violation of sorts, no? even if it is by choice. i know many of you out there have suffered through chemotherapy, and that there are nearly endless combinations and uses for the mind-bottling array of cancers. still, they are all poison. and sadly i know from a friend that they can kill faster than the cancer itself.

with the (estimated) continued growth of my tumors, we had to take that risk and dive into treatment. today i started a cycle of carboplatin, which has numerous but not necessarily guaranteed side effects. it could be nasty – i could lose my hair or be fatigued and sick all the time.

or, none of that could happen and i could go on living my life, slightly weaker but still vital.

so far, i don’t feel much, other than a vague sensation from my body that something is not quite right. then again, i’ve felt like that for a long time, so it’s hard to say exactly what is going on. but it’s refreshing that i am not yet dealing with anything serious. i am awake far later than planned – i was given a heavy dose of steroids to help support the current regimen of anti-nausea, and now i can’t sleep. but my biceps are already bulging. time to sign up for major league baseball!

just to fill you in, since i know some of you will be curious about this – before the treatment i went to memorial sloan kettering cancer center. they’re working on some genetic testing of my tumor samples to see if my BRAF gene is mutated. if it is (and about 60% of people are mutated) then i may be eligible for this trial. the sampling takes a couple months so they advised me to move forward with the carboplatin treatment. and most importantly, they will now be in regular contact with my oncologist at NYU. it’s always a good thing to have top-level doctors talking about your case.

to wind down from another 8 hour day in and out of hospitals, kathryn and i visited a friend near times square and took advantage of her 30th floor pool and hot tub with views of a patriotic empire state building. in repayment, i took us all out to pedicures. now THAT is how to recover from the first day of chemotherapy.

i’m taking the holiday off but expect a full email report shortly after the break. have a fantastic holiday and thank you as always for the constant stream of love and prayer and support.

Or, be careful what you wish for.

In solidarity with my starting another round of chemo today, some of my crazy friends decided to shave their heads. Even though I’m probably not losing my hair. Don’t ask me to explain it. Let’s just revel in the hilarious terror of my bald friends.

after another not-so-fun commute into work this (finally!) sunny monday morning, i gave up and went back to my friends at NYU. i told them about my symptoms increasing by the day, the pangs of pain and nausea and acid reflux and more. they put me on a three hour fluid IV for hydration with an anti-nausea drip and it helped some. i’m hoping to work tomorrow but it’s getting very challenging to make it through the day. the nausea alone i could mostly deal with but since these shooting pains have started it’s just been too much to bear.

while at NYU we developed a plan of action, which is always nice to have. i’m going in to Memorial Sloan-Kettering on thursday morning but after chatting with my oncologist, it sounds as if i won’t be eligible for any open trials there. so the plan is to check in with MSK to confirm that fact and then head to NYU to start a heavier round of chemotherapy. i’ll tell you all about the drugs when it’s not so late. it’s strong stuff but luckily i won’t lose my hair. which is funnily just a tiny bit disappointing since i was actually getting excited to have an awesome collection of wigs and hats and fake eyebrow/glasses combinations. also to see who would rally to shave their heads along with me.

steve, i would love to see you bald some day.

this week i have appointments at both NYU and Memorial Sloan Kettering to discuss clinical trials. i’m ready for something, because my symptoms are getting worse by the day – nausea, stomach pains etc – and it’s obvious that the tumors are worsening. so it’s time to get started with something, and i assume that by next week i should be either in a trial or undergoing heavy duty chemo. i’ll keep you posted as the week progresses.

What scares you in the coming week could, by August, become what fuels you. What makes you feel unsettled and out of sorts could turn out to be good medicine. But, of course, you’re under no obligation to submit yourself to this experimental sequence, Leo. The fact is, you could probably run away from the discomfort and get immediate relief. Unfortunately, taking that approach would deprive you of the benefits that will almost certainly come from enduring the discomfort for a while. My preference is that you be brave.

I’m on the way to a mets game, hoping that it’s not rained out like this whole month of June. We’re on pace to have the coldest, wettest June in New York history. Kathryn wore flannel plaid this morning and it felt completely apropos. I think I’ll put on some Nirvana, drink some coffee and write a dark, brooding poem.

Or maybe I’ll make tea instead, because I’ve given up that most excellent of vices that is coffee. The bitter drink destroys my already battered insides and even a few stolen sips has a deleterious effect. Same with booze. Pretty much I can’t do anything fun. Oh well.

At least I still have baseball. Unfortunately the Mets are breaking new ground in creative ways to lose, so that doesn’t help much. I’ll take solace in our gorgeous new stadium.

Baseball, music, episodes of Freaks & Geeks, bridge, meals with friends – all great distractions from how I feel, which is a little worse every day. The big brother blowing in my ear feeling is distracting and sometimes painfully so, and I think my nexium has stopped working. It’s hard to stay focused at work when I feel so drained all the time. But life goes on.

I have an appointment on July 2nd at Memorial Sloan Kettering and I’m hoping a cancellation opens up so I can get in before then. I’m also getting compression shorts so I can get a break from my bandages – that’s right, I’m still wearing those 24 hours a day too. I can’t wait to get those off, although I’ll still have them on at night.

Almost to the park! Let’s. Go. Mets!

I’m glad it’s friday. It gets exhausting, this battle. The day-to-day, the constant un-/re-bandaging, the fatigue of my body eating itself. I’m going to a friend’s pool and hot tub this weekend to regain some of myself. Mostly I’m just glad that it has finally stopped raining here in the city and that the sun, no matter how dangerous it is to me, is shining.

I’m going to be dogsitting tomorrow and Sunday, so if you’re in the hood and have a dog (tempy) let’s hang out ok?

Enjoy the weekend folks!

Thank you everyone for the many messages of support, relayed prayers and lovingly crafted text messages. They are much appreciated.

A heightened state of awareness has enveloped me over the last few weeks. Awareness of the fragility of life, of my own body in particular. Awareness of an ever-present beauty, in my garden, the woman wrapped in my arms, fireworks through the wires of the Brooklyn Bridge, music in the air. I’ve been known to cry easily, especially when moved by music. But it takes even less than usual these days. A melancholy saxophone on a gray, rainy afternoon; a subway-riding cellist playing Bach for whom I emptied my wallet. I’m going to the Philharmonic on Wednesday and might be left a wreck. I’ve never hoped for a twelve-tone program but it could be safer that way.

Increased tenderness is welcome, but treacherous.

sorry, i’m lazy. here’s the email i just sent out.

Along with the ulcer in my stomach, the camera pill found four tumor sites at the top of my intestine, and there may be more. There are enough in a wide enough area that surgery just isn’t a viable option any more – at this point any surgery would be disruptive without necessarily guaranteeing any significant progress against the disease.

So now we’re looking into a number of clinical trials, and I’m also heading to Memorial Sloan Kettering just to make sure that they’re not working on anything new and exciting that perhaps NYU hasn’t heard about yet. It’s unlikely, but at this point I have to look closely at every available option.

My oncologist has particular confidence in a trial that is a combination of chemo drugs including my old friend/nemesis Temodar. Since I’ve already been on Temodar, I’m not eligible for the trial. But my doc is negotiating with the drug company to see if they’ll give me access to the drugs. I may be able to follow the protocol alongside the trial without actually being a part of the study group. It is definitely encouraging that I responded so well to the Temodar, and it gives us hope that I will respond effectively to the next level of treatment.

It’s a heavy time, no doubt about it, but there are many more avenues still available for us. Some of them are not pleasant, and I will likely lose my luxurious locks and red beard. We will be moving quickly into the next phase of this battle and I will continue to keep you posted. Thank you as always for your support and loving embrace.

a.k.a. pyloric antrum. that’s where my ulcer and accompanying tiny polyps live, for the moment. that’s the word on the street. haha, cul-de-sac, street. i kill me.

i’ll have all the info on the surgery and schedule on monday afternoon and will let everyone know. have a good weekend!