Synopsize ME™

Facing death (and giving it a bloody nose) is traumatic and life changing. People know that, they expect it. They expect you to be outwardly and obviously changed, to impart great wisdom from the beyond or be an insane, drooling vegetable. They expect you to win the Tour de France™ or spend the rest of your life in a home for those of similar incontinence. They expect you to be really nice or really bitter. They expect you to become a Buddhist or at least quit smoking. It’s human nature to expect a return on your emotional investment, some resolution or just plain punctuation. I did.

But facing death is actually pretty exhausting. The return on investment comes with time, rest and reflection, which I’ve tried to enjoy to the fullest this past year and change:

I started teamBEAT!!!™ with Jane and Damien in the very wake of Michael Jackson's embalming - a Soviet synth-pop revival band that toured Germany three times;

Launched two perfume lines for Avril Lavigne, aimed at the consumerist, brand-conscious, yet somehow 'rebellious teen' market... kids today;

Successfully embarrassed one of the richest men in the world (name withheld);

Crashed a honeymoon in Thailand to learn something I already knew about myself:

Starred in a Swedish Toyota commercial; 

Had the usual twelve-day festival, mikeFEST!!!™ - now in its 28^th year and with ever-better posters:

Got back and better than ever into shape after prolonged illness and atrophy.

And I watched as my two remaining tumors (17mm & 13mm), out of an original total of seven (after the brain baseball), shrank to just one that was ‘only marginally enlarged’ at 12mm (October 2009). That last lymph node is now (as of May this year) down to a normal 10mm with absolutely no sign of cancer.

And I’ve changed in very dramatic, but outwardly subtle ways that were never black and white and rarely apparent even to those who think they know me well. It is a life-changing experience, but it’s my life to change and figure out which babies to throw out with the bathwater. Real change takes time. I’m just happy that I have a lot more of it now.

three years

I went to see my oncologist yesterday for the second time this year for a wide smile, friendly chat and a checkup. Ironically, it was the third anniversary of when I started to lose it:

Three years ago yesterday, I’d been up for three nights straight putting together a photo exhibition (my first) in my courtyard and had stopped taking ibuprofen, taken to smoking cloves and wanting to be an artist, damn it. Here’s one of my favorites from the show:

Around two in the morning after my vernissage, I was at some club and started dropping beers. Things then went slowly from bad to worse until by Christmas, I was seeing double and could barely walk. The rest, as they say, is history: accessible from the archive to your right ->

Yesterday, my oncologist and I discussed her recent trip to Egypt, my summer and the book I was reading. She couldn’t stop smiling, as she’s not used to happy endings to stage IV melanoma with brain and lung metastasis. Being an oncologist must be the saddest job in the world. She was going to order a PET/CT for December, so I told her the following story from the last one in May:

me: Hey Doctor, it says here that one of these exams is equivalent to four years of ambient radiation. This is my eighth, that’s thirty-two years of radiation!

Radiologist: That’s right.

me: Isn’t that unhealthy?

Radiologist: Well, yes, but, let’s see… [looks at file] Wait a minute. You had radiation! That’s thousands of years of radiation!

Oh how we laughed. And so did my oncologist, but we negotiated down to an old-fashioned (less carcinogenic) CT instead, as she agreed that I needed more radiation like a hole in the head – which they also gave me. We left my next appointment until ‘sometime next spring’ and I asked her if she had many patients like me. “No, not like you,” she said and smiled anyway.

back in blog

Well, it’s been well over a year since I’ve posted anything. There were a lot of reasons why I stopped writing, but after more than a year and a half as a full-time cancer patient, mostly I just needed a vacation. I didn’t want to be ‘that guy’ anymore. I didn’t want people constantly asking me about my health, treating me differently or even deferently. Pity and praise, thoughts and prayers prefaced pleasantries and broke the ice, but not for me, not after a year and a half of it.

Cancer was a total mindfuck. I’d spent too long with too little choice over what I wanted, despite everyone doing what I wanted, which can actually be worse. So I declared myself cured (which I actually wasn’t – not completely like now), purposely burned the rest of my cancer cards and began to do what I wanted to do (which can also actually be worse).

I also felt that this blog had deteriorated into a bit of a travelogue, with little substance in terms of cancer advice and was hoping to correct that, but didn’t believe that I had the appropriate detachment, objectivity or even proof of my own cure to preach to others about a condition that I just happen to know a lot about from terrifying, first-hand experience. 

But I think I have that detachment now (or at least as much as I ever will) and survival guilt has seriously begun to ruin my party. People are dying while I rationalize and make excuses, and although I can’t possibly understand what each goes through in their own private hell, I do understand better than most and I think I can help. So instead of rambling on about my wacky misadventures, I feel I owe something to the memory of those that have died and to those just beginning the horrible waking nightmare that is cancer.

That said, I’ll write whatever I feel like, and if wacky misadventures can somehow inspire those who think that their life is over after being told that their life is over, then I’ve done some good - because it’s only just beginning.

the backstory intro...

First they thought it was pinched nerves, then “some hematological problem”, followed by “some tropical disease”, MS, a primary glioblastoma (baseball-size brain tumor) and now Stage IV metastatic malignant melanoma. This blog is the private, yet public, purely anecdotal evidence of my eventually successful 'battles' with cancer, bureaucracy, xenophobic finance people, as well as with my own personal demons. Enjoy!

cured?

There’s a nasty rumor floating around saying I’m cured of cancer. I know ‘cause I think I started it – and it’s even mostly sorta true. Read on.

I had the now far-too-familiar PET/CT scan the Monday before last just after Jon and Tommy arrived from Berlin to accompany me to the hospital where they could nap in upright comfort while I was injected (purposely) with radioactive glucose directly into my right hand (accidentally) bone (or whatever the technical term is for those bones in your hand) which spent the rest of the day as an arthritic useless claw:

I called my oncologist on Friday to get the results. “No cancer!” she said. I said, “What do you mean, ‘no cancer’?” She said, “No cancer! Come see me at the end of August.” I took that to mean no cancer. When picking up the radiology report yesterday though, I noticed it actually says, “We don’t find any masses of glucose hypermetabolization that would clearly indicate any neoplasm (tumor). Post-radiation fibrous changes in the left lung.” Or, in other words: no (detectable) cancer and sorry about the radiation.

But comparing the two scans, this and the one from March, there’s been little change – the two tumors in the lymph nodes remain the same: 13 and 17mm respectively, and the ‘mass in the lung is without obvious changes’. But none of the above appears to be viable or active in any way. Very good news, mind you, but pretty much the same (very good news) as last time, if you account for the wildly different writing styles of two wacky radiologists.

I also got my Czech visa finally registered last week – the end of a very long and tedious process. So that’s it! Got visa, European-wide health insurance and am cured of cancer. Thanks everybody! My exhibition was a blast and I had a great time with Jon and Tommy, when Jon wasn't yelling, that is:

I’ve spent the last week contemplating everything from my own navel to the universe, but mostly what the hell am I going to do now that I’ve got my health again, but no money. I guess I need to get a job of some sort. Any ideas would be most appreciated.

I’m escaping the craziness that is ‘museum night’ here in Prague in favor of a solstice party in Kolín, leaving in a few minutes. More soon and, as always, thank you for your support.

back in the USSA

Hey! I know it’s been awhile and I’ve had my share of flack for not posting, but mikeFEST!™ totally blew me out this year (and yes, I’ll get to that blog in a bit for the sake of my posterior and posterity) AND I’m in the States right now dealing with all that entrails.

I got into New York last Saturday and went to the consulate on Monday to pick up my visa. Instead of the familiar black dude working the reception, there was an even more familiar cookie-cut, ageless Czech bureaucratess manning the helm. I gave her the old dobrý den and hit the button ‘picking up visa’ to get my number. Just before my finger hit the button, she started yelling in Czech, “No! No! No! You have to sign in FIRST! AND you hit the wrong button!” She got on the phone and put the whole consulate on alert that I had made a mistake. “That was a MISTAKE! He made a mistake! Forget it! Ignore it! Mistake!” she barked and bawled. “Sorry,” I said and signed the register. She hit the button ‘picking up passport’ and gave me a new number.

But I wasn’t picking up a passport, I thought. She then had to deal with a delivery that she was making unnecessarily complicated for everyone involved and the consulate was about to close, but it was quite a few prosíms before I could get her attention and explain that although there was nothing I’d like better than to skip the whole visa thing and go straight for the citizenship, I should probably just get my visa and be on my way – which I did!

I flew up to Burlington on Thursday and took the ferry to Plattsburgh whence I’m writing now. We made a quick trip to Montréal on Friday and now mother and I are off in a couple of hours to visit the rest of the family in the Leatherstocking Region of the Mohawk River Valley, before I return to Middletown briefly, not to spawn, but to bowl with Sherman. I’m back in NYC on Wednesday and leave for Prague the following Monday, arriving Tuesday morning.

I’m exhibiting a series of abstract photos along with nine other photographers on Wednesday, June 3 at the Czech Inn on Francouzská from 18 – 20h. Hope to see you all there! Free glass of wine and snacks! Here’s the flyer:

The exhibit will hang for a month and everything will be priced to sell! I’ll have yet another PET/CT on Monday June 8 - the day after Tommy, Jon and Annette arrive in Prague for more mischief, mayhem and general disarray. Until then! Then.

clean scan

I got a wild hair up my ass to see the Butthole Surfers last week [pun absolutely intended] and got a ticket at the door. Great show! I don’t know why I wasn’t into these guys when I was younger. I had that brain MRI at the ungodly hospital hour of 5PM. They start very early and it was a Monday, so I expected a ghost town of a pair of living dead - which is what I got. So I certainly didn’t think the radiologist would want to stick around to burn me a CD, but when she offered, I couldn’t say no.

How does it look? I asked

Pretty much the same as last time. Do you want a CD?

Sure. It looks like last time? Really?

Yup. Give me five minutes.

She took her five minutes and gave me the CD. I got it home and sure enough, it looked like something I’d seen before. I had a huge hole in my head!! It took me about five minutes to realize that the exam was from February 2008, just after the operation. I went all the way back the next day (2hr rt) to get the correct exam:

Which was a lot more reassuring. The right side of my brain (left side of image) has taken over much of the left side (right side of image) where the tumor was. Damien says that should make me more creative. Or better at math. Dunno. And Jane’s in town with Johnny from Kiev for mikeFEST™. Here they are making the stencils for the official mikeFEST™ t-shirts, which Johnny thought was hilarious:

Kat got here from Paris yesterday and we exchanged our pesto salad for some chicken on the hill - the official kickoff for mikeFEST™ in Prague. Speaking of which, news of the more mundane variety will be reported at http://mikefest.blogspot.com/ for the next two weeks. Please make a note of it. Off to karaoke.