Sunday, June 21, 2009
the backstory intro...
Saturday, June 20, 2009
cured?
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.
Monday, May 25, 2009
back in the USSA
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:
Saturday, May 2, 2009
clean scan
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.
Thursday, April 16, 2009
prague spring
Martha and I decided to see Obama together the following morning, so we’d have each other to blame for being late. After several pitfalls, misstarts and missteps, we got in by the skin of our teeth, just as HE was about to go on. Others were not so lucky:
Then they closed the security both in front and behind us, leaving about 50 trapped in a no man’s land between a string of metal detectors looking like high-tech exhibitionist port-a-potties ringing incessantly to the metal-laden crush of would-rather-not-be-no-man’s-landers, a 12th century castle wall, and the not-so-lucky above-pictured.
After about twenty minutes of pleading, they finally let us through to wild applause that wasn’t for us. It was a bit disorienting to see the American (and only) flag flying above Prague castle, but considering we didn’t actually have a government here then, I guess that made sense. It was our time, our moment indeed.
After the show, we met up with Greg and Mary at Luke’s Hotel Jozef for a fantastic and very healthful brunch! And then it was off in search of outdoor drinking while shouting ‘Obama’. From U Kotvy to O2, it was Election Day revisited in better weather. Mary was particularly patriotic... for a Canadian:
Obama must have said something to the Foreign Police while he was here, ‘cause on Monday, just before midnight, I got a call from the Czech consulate in New York telling me stop by and pick up my visa! I couldn’t believe it, so I checked the website that I check every day and sure enough, my number was the first in a series of hundreds. I guess she had a lot more calls to make. Weird.
So I’ll be back in New York on May 16th and will stay until the 1st of June. Orthodox mikeFEST!™ I guess. Plans are slowly coming together for mikeFEST!™ XXVII 2009 in Prague, kicking off exactly two weeks from today:
Travis came down from Berlin last Thursday and Casey and Matt were in town for Easter weekend:
And a pretty motley crüe gathered at Jirka’s out in Wet Dogs for Easter Sunday beach and barbecue:
I had been feeling sharp pain in my chest (left tit) for the past two weeks and was convinced that the fibrosis in my lung was worsening rapidly. It felt like I’d been shot with a shotgun. I’m now pretty sure that I just bruised my pec or cracked a rib while being dragged on the wrong side of the T-bar during that 20-minute long pull-up when skiing in the Alps. I’m much better now. Brain MRI on Monday... can’t wait ;-)
Wednesday, April 1, 2009
schladming!
The looks! The looks (and smell and feel) of pure hate I got from my fellow tram passengers! Seriously, try it. Try baldface lying in public in front of a large group of strangers who aren’t supposed to be listening to you. It’s amazing. I have never felt so terrible. Really a perverse rush. I finally had to explain to the entire tram that it was a ‘social experiment’ – I felt that bad. I couldn’t let them think that anyone could be that evil. I’m sitting this Fool’s Day out – I’ve had my fun already.
In the end, I did go to the mountains, the Alps of all mountains, for the weekend:
with Chris, Greg, Jack, Johnny and Pražák:
and kinda overdid it the first day. Given all my recent power dancing, I thought skiing would be a breeze. It wasn’t; and my legs completely gave out after a good eight hours. I still had a great time despite the occasional tangle (tango?) with the T-bar – long story short: I got dragged rather than 'lifted':
I actually skied a lot better when I was 14, much too much chagrin. But skiing is more about looking good than feeling good and no one looked more stylish than me with my glasses fashionably squashed into my (Greg’s) goggles:
And the nightlife was almost as demanding as the slopes, but we made it back to Prague alive and mostly intact – just in time for spring. I hear the beer garden is open.
Friday, March 13, 2009
remission?
All tumors are showing “significant regression”: having shrunk to just over half their former sizes when compared to the last PET/CT in October;
while exhibiting “only minimal glucose consumption” = very little metabolic activity “that would testify to the presence of a viable neoplasm”; but
the pulmonary fibrosis (from the radiation) is worse (and will get worse, before and if it ever gets better) - seen above in the left lung (on right) as that nasty looking star wars starburst pattern of laser blast;
my gall bladder is still ceramic (from the chemotherapy);
and my waistband is, yet again, too tight.
I’m quite pleased with the results, as people generally don’t (actually pretty much never) get better from what I have. I’m not out of the woods yet, but think I found a path. I’m shooting for the ‘all clear’ on my next PET/CT in June, at which point, I will very grudgingly go down as a (very rare) positive statistic promoting the conventional therapies (chemo and radiation) that are the direct cause of all my current health problems. Fingers crossed ;-)
I saw my oncologist yesterday who was thrilled to the point of speechlessness and I’ll try to see my Chinese doctor next week so he can take some of the credit as well. I’ve spent over a year researching and using various therapies and supplements to beat this thing and will expose, expand and expound on each in future posts. I didn’t have the luxury or liberty of any ‘controls’ in this experiment: as time was considered short, I tried a lot of things concurrently, some intensively and others only sporadically.
But I’ll leave you with this ‘very distracting’ picture I took on Wednesday and got yelled at for at GlenGarry Glen Ross. Certain actors, apparently, can be thrown off their game by a little autofocus lamp:
Monday, March 2, 2009
back at it
A life-long dream of mine had been to see the Harlem Globetrotters® do that thing they do live. Bombarded and teased with advertising throughout my childhood for upcoming performances just a few towns away, I’d always felt a little cheated, left out and behind for missing out.
I don’t feel that way anymore. Thanks to the Garden of Dreams™ people at MSG® (OK, Christine, really), that dream came true much to my personal disillusionment. Not that there was anything wrong with the Trotters, just the ‘garden’ itself was a little fallow:
Remembering with relish the spread for the rodeo, I had starved myself all day in anticipation. This was on pay for tray at the event:
‘Unless them onions is frizzled with gold bullion, or that pork pulled out of the automaker bailout, I ain’t shellin’ out 91 clams for a sammich,’ I chided myself. There was, however, free beer (a lot), of which we indulged (a lot), before somehow waking up in a Dominican restaurant on the Lower East Side covered in salsa.
The rest of my time in NY was parties, packing and saying goodbyes and then off to Berlin, where I had a day of running errands and deutsche domesticity with Travis (doing dishes):
With Travis off to London and me chomping a bit at the bit to return, I took the train back to Prague the following morning and Jiffy picked me up at the station with a couple of beers:
In my absence, my apartment had been redecorated in the minimalist off-white motif of a 19th century hospital ward - not much different from where I’d been a year ago, so I felt right at home at home, as it were. I also lost CNN and the crappy German teleshopping/soft porn channels in favor of the Czech flavors, while the Vietnamese store below my house is, not-so-sadly, not with us anymore. And my cat is having a second childhood – not that any of these things are correlated, necessarily.
Maintaining the momentum from my trip for a few nights, I hit the town and finally hit the wall the first weekend with a flu that left me delirious with fever and otherwise incapacitated until the following Thursday when I went out to Motol for blood tests at 7AM.
I decided to wait around for my oncologist (instead of for the scheduled Monday appointment), so I’d be able to go skiing in the Italian Alps the following (this) week - four months of traveling not having been enough. She gave me the twice over, couldn’t feel any tumors in the nodes, arranged for a CT on March 23rd and a brain MRI on April 20th and told me to call later for the blood results.
When I called later, she told me that my creatinine (a waste product of the muscles) was three times the norm (245μmol/l) and I needed to come back the following morning for more tests and a sonogram, as this represented severe kidney failure. I did some research and it didn’t look good, so I cancelled my trip to Italy, drank lots of water and went to see Monogram with Josh at U Vodarny where I had a lot of beer to kick my kidneys into gear.
I went in at 7 for the tests and then came back at 11:30 for the results and the sonogram. The tests were fine and the sonogram cancelled. I’d managed to lower my creatinine to 63μmol/l – the low end of normal – even without dialysis! She also pointed out that my ‘melanoma marker’, the S-100β protein, which I had no idea they’d been testing for had dropped to .071μg/l from .232μg/l last March - now in the ‘normal’ range! Apparently, anything below .1μg/1 is good. Very good news if you can read between the Greek.
John and Amanda threw me a welcome back party of sorts somehow on Saturday night downstairs at Erra. Nicola, as usual, was in charge of the camera:
We then went over to the latest incarnation of ‘The Zone’ across from my old apartment, now called ‘Bendy’s' of all things:
Which was fun. I'm going to try to see my neurosurgeon tomorrow morning to arrange yet another exam, so I'm off. Sorry this post has been so long in coming (and in length), but it’s been a long few months. Thanks to everyone for their supportive comments on the last post and a special shout out to all those who hosted me on my American tour. I had a great time, but I’m glad to be back, for now at least ;-)
Wednesday, February 11, 2009
one year since surgery
On Saturday, we popped by the neighborhood carnaval for all of forty seconds for fear of getting foamed fore dinner:
and a few drinks at a Moroccan restaurant in Palermo:
and then sat the night away at a really cool milonga in Almagro:
We got up early on Sunday for the first time that week to go to the street fair:
before grudgingly leaving for the airport and our respective ways. I nearly froze to death in the exit row (they actually leave the door partially ajar), but managed to get some sleep on the way back. I got into Kennedy around 4AM and had to walk thirty taxi lengths to get to the front of thirty sleeping cab drivers. #1 was also drunk. He drove on the shoulder, weaved in and out of lanes and was furiously honked upat. I made him promise to sleep it off.
Sherman came down for Ethiopian food and some great live soul music on Tuesday. I got a bit of a head cold and am taking it easy. Today is the anniversary of my brain surgery and I dug up this bit I’d written just shortly after the operation:
They put me on a stretcher and whipped me down to the second floor. The ceiling lights were flashing by just like on TV. I felt OK, strangely - confident, but not exactly relaxed by any stretcher of the imagination.
“Every Where You Go, You Always Take the Weather” or whatever that song is called was playing – c’mon you know the one. The orderly parked me over some complicated-looking device and started plugging things in.
Someone asked if I spoke Czech and someone said “trošku” (a little). I barked out, “Mluvím dost!!” (I speak enough!!) Turned out to be my neurosurgeon who was just making sure that people spoke to me clearly and slowly throughout the procedure. Yet another example of me making an ass of myself in front of my neurosurgeon.
I woke up to the sound of high-pitch drilling to the left side of my head... and to pointless Czech-chick giggle hoohoo elsewhere in the room. After what seemed to be an eternity, I got up the courage to make some noise through shallow breath and clenched teeth, so as not to lose an ear to the laser.
“Prosím? Prosím! Prosím?!” I ventriloquized louder and louder, until the catty chit-chat came to an abrupt end and a nurse put her head in my face. “Vý jste po operaci, Pane Gisondi! Po operaci!” she beamed. I fell back into dreamland only vaguely understanding that the operation was over.
The next thing I saw was my Mother, Mary and Irina in full-on OR scrubs and masks, eyes asmile, mouths liplessly shouting muffled questions and commands in French and Russian for some strange reason. I responded in kind to their seeming satisfaction. I had some numbness in my left foot, but everything else seemed fine.
I saw my neurosurgeon in the hall and thanked him profusely. He looked very upset. I thought it was because of the numbness in my left foot. I told him, “Well, you had to cut something, don’t worry about it.” He looked at me aghast and then just whispered, “Metastaze.” “Whatever, thanks again!” I said. I only found out what he meant several days later...
~
And I wasn’t thinking about where I was going to be a year from then, I was thinking how grateful I was to be alive (and not a vegetable) that day. A lot's happened since, but it’s great to be in Brooklyn after a year, suffering from a little head cold and eating homemade chicken soup at Tim’s.
Friday, February 6, 2009
missing deltas
Ann missed her connection in Atlanta (due to Delta’s typical, but still incredible incompetence and complete lack of accountability), so she came a day late into her already tight schedule. I took her to the “Modern Art Museum” just around the corner for starters:
which looked like it hadn’t been open in at least a decade. So we wandered down to Puerto Madero and then to one of my favorite restaurants, Café San Juan, back in San Telmo with my neighbors, Keith and Michael for a great dinner before the Red Door for chili bombs:
On Wednesday we went to MALBA, the actual functional modern art museum, and then across town to La Boca to catch the sunset and have dinner at my new favorite restaurant: Don Carlos “Carlitos” next to the Boca Juniors stadium in La Boca, of all places. And although I don’t usually trust anyone with two first names (let alone three), we put ourselves entirely in the hands of Carlitos himself and let him stuff us with a fifteen course meal, completely of his choosing.
“The lady may have a little room left for a very small dessert,” I said after he had brought us a plate of cheese sorrentinos (delicious fat raviolis) to chase down our steaks. Instead of a single, “very small dessert”, he brought three rather large desserts, which we inhaled shamelessly. The bill, like the menu, was completely arbitrary. We were so drunk on food, literally euphoric, that we would have paid anything. It was an amazing experience and surprisingly reasonable. We unfortunately ate too quickly to take any pictures.
After we aborted trips to both Uruguay and the Paraná Delta (not having much luck with deltas), due to a late start and drizzle yesterday, we settled for a tour of Recoleta Cemetery from a resident guide:
and went to Bellas Artes for some more culture. Our walk to the massive Retiro train / bus station for bargain bags and sneakers and the half hour wait at a cash machine was more than enough of a side trip experience. We’re going to spend the day (what’s left of it) in Palermo and then go to ‘real’ karaoke tonight back in the hood.
Here’s a funny and popular local flea treatment product to round out this post:
Monday, January 26, 2009
year of the ox
And not just for the pleasure of seeing the back-end of a jackass and his last tax-payer-paid helicopter ride, but because of the over 35 degree (that’s like 100 degrees F) spread between our respective temperatures. It was almost worth missing America’s greatest moment in person for the pleasure of watching it in shorts.
On Thursday, Michael and I went down to La Boca to take pictures of brightly-colored shacks:
The next couple nights are a bit of a blur – I’ve been out dancing until 6AM, pretending not to have cancer. What’s funny is that people don’t seem to notice. They can’t even tell! Amazing.
Saturday was to be my night in (the weekends are for amateurs), but my neighbor invited me to a barbecue at his place to meet his girlfriend’s fantastic parents and brother:
I was grilled by the father about all things Czech for much of the evening, until we moved on to the topics of Basque nationalism, the Spanish monarchy, winemaking and New York in the early ‘70s (last time he was there). We laughed and bantered until 4AM. Coty (the lovely girlfriend – Constanza) said that they never stay up past 2, even on Christmas, so the evening was declared an unparalled success!
Yesterday we went from the overcrowded frying pan that is the San Telmo street fair straight into the fire of the ‘Ballio Chino’ for New Year’s:
All the restaurants, as well as the streets and sidewalks, were jam-packed, so we had pizza at a nonstop, but I did manage to find my ‘membranous milk vetch’ in a supermarket, so that’s a relief:
The year of the ox should have interesting implications in the Czech Republic, so please keep me posted. Ann comes to visit on Sunday. Can't wait.
Monday, January 19, 2009
¡che boludos!
typical of most domestic sporting events, but this time compounded with a disturbing and pointless tribute to the US border patrol (who are hiring!), which had all of the Latin American rodeo stars shaking in their cowboy boots:
I couldn’t believe my luck when I scored an exit row all to myself on the plane to Buenos Aires, until I realized that everyone else had three seats to themselves and my armrest was the only one bolted to the floor. I was also right next to a bathroom with a broken door. I did manage a little shuteye on the redeye in between flushings, slammings and the occasional butt in my face.
I arrived to a rather odd, even for here, financial crisis where a one-peso coin now has more value than a two-peso bill and candy is legal tender. Edible money, very Marie Antoinette, but it only goes one-way: not-so-strangely, you can’t pay the bus driver in bonbons.
I stayed with Keith and Michael my first night and we went to a milonga in the hood. On Wednesday, they helped me move into the adjacent apartment from where I'd lived two years ago and just three blocks away from their place:
http://www.giessoprop.com.ar/ver.php?id=224
We had an ad hoc housewarming party when my French neighbor, Julien, popped by as I was airing out the place from its former tenant. I finally got my mobile working after a one-day, one-way battle with the boldface liar of a not-so-interactive voice response system of the not-so-‘es simple’ non-folks over at mobile operator, Claro. My number here is: +54.911.6131.9074.
We went over to Sarah and Diego’s house for delicious full American breakfasts and anti-depressants at 10:30 PM on Thursday:
and then to the karaoke / cantobar at 'Loca Bohemia' that still hadn’t started by 2:30 in the AM. They don’t really get the concept here, which is a good thing, as you get a professional live band instead of the usual Muzak™ rip-off version and cheesy vacation video (no offence, Steve):
Yesterday we hit the San Telmo street fair and tomorrow, we’ll watch the inauguration with other expats at the local version of the Globe. Go Obi-Wan-Obama!
Saturday, January 10, 2009
getting outta dodge
I met Patrick and George in Williamsburg for drinks, had dinner at Ru and Pamela’s in Harlem, then spent the last couple days in bad weather at an empty Yale with Tom and Pauline and am now back in Brooklyn, of all peoples and places. Tommy’s in town this weekend. We’re going to the rodeo tomorrow at the Garden – VIP suhweeet! It was all the Make-a-Wish™ people had left over from last year - well, that or a day with Barney™.
I can’t take the constant pressure from the imminent switch to digital TV and am going to Buenos Aires on Monday to watch Law and Order in peace. Maybe the land of steaks and sun isn’t the best holiday spot for someone in my condition, but I feel fine and figure I can probably save some money to boot. Ann’s coming down at the end of January. I’ll be back in Brooklyn on February 9th.
I’m sad to miss the inauguration in DC, but I think I’ve already got the gist and feel much the same way:
Today marks the anniversary of my diagnosis: one year since the morning Adlai took me for the MRI that changed my life. And although it’s been a pretty horrible year, I am eternally (however long that is) grateful, obliged and indebted to family, friends and strangers for the love and support I’ve received since this nightmare began. So thank you.