Archive for the ‘images’ Category

home again!

Thursday, August 26th, 2010

i am so happy to be home. it was a pleasure getting on the plane only to find one of my bestest friends chris sitting a few rows up from me. we shared stories of our journeys and a cab ride home. takes the edge off a 2 am arrival, don’tcha think? i managed to catch something on the plane and spent yesterday expelling whatever it was. still in recovery today – my immune system is just not what it once was.

you probably don’t have a google alert for melanoma, but the BRAF trial drug (a varietal of which i’ll gear up for on monday) is everywhere in the news right now. one story said that it’s “the most important breakthrough in melanoma, ever.” it’s hard to believe that this is the best we have – BRAF drugs have not proven to be a permanent solution, and in most cases offer six months to a year of disease-free progression. but hey – i’ll take it.

the other big melanoma news is the new showtime series the big C, which stars laura linney as a stage IV melanoma patient who chooses to hide the disease from her family and friends. i finally had a chance to watch the show while out in california. it’s remarkable that the producers/writers of the show are able to glean so much humor out of trauma.

but enough about that! here are pictures from the wedding this weekend in soda springs. friends and location both confirmed as gorgeous! the bride and i went to both high school and college together, and since my diagnosis she’s been an amazing friend, sending me care packages that i treasure to this day. it was such a treat to be able to celebrate with her and our wonderful group of friends. tagged pics are available on facebook!

summer essentials indeed (thanks jane)

Monday, July 19th, 2010

pennsylvania 4th

Wednesday, July 7th, 2010

so friends – check out this amazing house where we stayed over the weekend! unfortunately my camera died before i could get all the interior shots i wanted, but you get the picture. so awesome. thanks lila and matty!

tanning in the news

Tuesday, June 29th, 2010

i took part in a press conference on sunday to discuss bronx city councilman james vacca’s municipal legislation barring tanning salons from “wooing teens or downplaying tanning risks.” did you know that manhattan has more tanning salons than starbucks? daaaaaaang. that makes me sick.

AMny had tanning issues as their cover story today. check it out! the original article is downloadable here [pdf].

here’s me at the press conference. sharp.

the camera pill

Friday, June 25th, 2010

ok, here it is, folks. the pill camera, in all its glory. and some gratuitous partial nudity. gotta show off the data belt! thanks to dr. rosenberg and dan f. for being good sports and taking pictures and video.

the pill is equipped with a strobe light (see video) that flashes a couple times every second and takes a picture as it goes. let’s say twice a second on average, for eight hours before the battery loses its charge. that would mean the doctor now has over 57,000 pictures of my insides. that’s pretty rad. the pill transmits data to the belt, which uses the connected pads to determine the approximate internal location of the pill.

it was about 95 degrees yesterday and i had to wear this damn thing for eight hours. not pleasant. interesting, though, that i walked through grand central with a blinking belt with wires bulging from my waist and wasn’t questioned. also unpleasant was returning the belt and taking the pads off my skin. the nurse said i did well not to cry, as she has seen with the more hirsute among us. still, i get to return the belt, and dispose of the pill, which is much better than having to return the pill.


hot.

this week: camera pill revisited

Monday, June 21st, 2010

what an amazing weekend! movie night with our new projector, swimming in the rockaways, brunch with a brand new baby. only problem was that it was freakin hot. sooooo hot. i’m nannying today for my neighbors and can’t wait to get to the new pier 6 playground to play in the fountains!

even though the scans have all been clean so far, i continue to deal with a lot of reflux and nausea, so we’re going to take a closer look with the camera pill a.k.a capsule endoscopy on thursday. it means another day and a half of fasting, but we found tumors in the endoscopy gap – an area of intestines that the upper and lower endoscopies can’t see – so it’s important that we rule out the appearance of any more. i just got a fancy new camera, so i’ll document the pill a little better than last time – lots of people asked about the pill and the monitoring system, so i’ll take lots of pictures for you all.

 

camera pill

if anyone works in midtown, i’ll be bartending this wednesday at bar nine in hell’s kitchen. totally awesome rock n roll dive bar. see you there?

it takes a long time.

Thursday, May 27th, 2010

one of the most intriguing items to come out of the young adult cancer summit this past weekend was a discussion about the long term effects of cancer treatment. one doctor said that it takes at least a year to regain your energy and clarity after finishing the brutal regimens of chemotherapy and radiation.

and i would thus far agree. i’ve spent the last two years being cut up and poisoned and although it has stopped for the moment, i’m still feeling constantly fatigued. as you regular readers know, the less i post about myself, the worse i am usually feeling. this past week has been no exception. now don’t get too worried; i’m doing okay. i’m just tired of being tired all the time. i can’t imagine how i used to manage my long nights behind the bar – when 10 pm rolls around these days, i’m ready to be home.

even when it’s fleet week.

fleet week

two years.

Thursday, May 20th, 2010

last night my wife and i celebrated the two year anniversary of our relationship. i’ve got to say that celebrating at the new location of hecho en dumbo (no longer in dumbo) was a special treat – we truly received the royal treatment! and good god the food and drinks are amazing.

what a roller coaster these two years have been. i don’t know what i would have done without her. my friends and family have been endlessly supportive, but at the core of it all has been kathryn.

kathryn as miss fortune

on our third date, i brought her flowers. and i told her that my cancer had spread, that my chances of survival were slim and that it didn’t seem fair to start a relationship in that state. i don’t care, she said. i’m with you one hundred percent. as my late friend in tanzania used to say: tukopamoja msili mia mia moja – togetherness, we are, one hundred percent.

she was there, on our fourth date, at the hospital, to meet my parents for the first time as i watched through lidded morphine eyes. she kissed me goodbye and i said “kissing you makes me want to throw up.” i was not feeling very well. and then, as she walked away, i told her for the first time that i loved her. what does an admission of love mean when morphine is involved?

she was there as i crutched and caned my way through this not especially disability-friendly city on my surgically destroyed legs.

she was there when the tube draining lymph out of my groin popped out and a kool-aid-like red-orange fluid spurted out of my body.

she was there when that hole was sewn shut and the fluid swelled inside me like an alien baby growing on my hip; she was there as the fluid was lanced again, and again, and again.

she was there when a bout of cellulitis brought on a fever that spiked 106 and they laid me on a bed of ice to prevent brain damage.

she was there for every single infusion of chemotherapy, and she was there as i tossed and turned every night afterwards, the evil, panic-inducing steroids coursing through my system, preventing me from any kind of rest, day or night.

she was there for all seven of my inpatient hospital overnights, for the 5 am shots of heparin to the belly, for the tortuous hours with my abusive roommate who eventually required a mediation team to prevent him from making any other nurses cry.

she was there for the hours of bowel-cleansing horror that is colonoscopy prep – actually, she wasn’t there for that. which was a good thing. but she was there for the endoscopies, upper and lower and the one with the robotic, strobe-lit camera pill.

she was there for the days between my scans and the results, the waiting periods full of uncertainty and terror.

she was there for month after month of bad news, watching helplessly beside me as my cancer meandered on its deadly course through my fragile body.

she was there for every moment of pain and doubt, every moment of weakness and fear.

and she was there, and continues to be there, as we celebrate my reprieve from treatment.

after my mom met kathryn, she said i was a fool if i let someone so special get away.

mom: i’m glad i took your advice.

tukopamoja msili mia mia moja.

milele. forever.

episode six: the return of the celebration

Monday, May 3rd, 2010

whew, what a weekend. there was major celebrating all around, although i would probably have celebrated more heartily had i followed my gut (and some insider tips) and stopped by the OTB to drop some money on super saver. if wishes were horses…

thank you all so much for participating in my remissional celebration with comments, emails, phone calls, texts, blog posts, facebook status updates, tweets, etc – i think that my remission has now been broadcast in just about every available technological medium. maybe i’ll make a podcast too, just for good measure. the outpouring of love has been incredibly touching and meaningful. nearly 600 people visited groinstrong on the day i announced my remission – just one small marker of the extent of the support that has kept me going all along.

and what better way to celebrate than with derby day? it was made all the sweeter with kathryn going home with the award for best formal hat (although few would call her slash/stevie ray vaughan style hat traditional). two years ago, derby fell just after my diagnosis as i faced my first major surgery and a very cloudy future. this year was a little more fun.

a special shout-out to colonel boyd for yet another fantastical party, and of course to william and the rest of the crew at our beloved bell house. most of you have already seen these pictures, but for the .001 percent of the world that’s not on facebook (or so it would seem) here are a handful of our favorite shots.

Derby 2010

what a trip.

Tuesday, April 27th, 2010

i’m still jetlagged, i think. but the scan yesterday knocked me out pretty good too.

there is so much to say about our trip out west. the music was amazing – my top five of the festival were dirty projectors, jonsi (of sigur ros), matt and kim, yo la tengo and the avett brothers, but fever ray, MGMT, jay-z, deerhunter, yeasayer, spoon, and atoms for peace (thom yorke and flea?!?) were also excellent. there were 80,000 people at coachella, crashing local cellular networks and personal neural networks alike: for example, this poor man.

after three days and long nights of music and mayhem, we managed to make it to joshua tree (yes, we listened to U2) and the antelope valley poppy reserve before fighting our way through the snowy, winding roads to yosemite.

yosemite gave us a cloudy striptease, revealing its majestic peaks and snow-covered meadows piece by piece. we were hoping to make it to the top of upper yosemite falls to spread a portion of my grandfather’s ashes, but the snow was so thick on the narrow trail that we stopped halfway up at columbia rock. the views weren’t quite as advertised – by the time we reached the rock, the snow was falling so thick that the valley floor was barely visible, much less the towering granite spires surrounding the valley. but we soldiered on along the valley floor trail, where i looked a coyote in the eyes and watched as the clouds floated in and around the high rock walls around us. i’m grateful we decided at the last minute to upgrade our tent cabin to one with insulation and heating. what a contrast, to go in 24 hours from 95 degrees to 25 degrees.

and now we are home, back in lovely brooklyn, and today is my least favorite day – the day between my scan and receiving the results. this is a big one. if the scan is clean, my doctors will declare me in remission. as i’ve said before, remission from my aggressive and widely metastasized disease is likely not the end of this – although it would obviously be wonderful if that were the case. i’ve spent the day so far worrying and thinking about “life after cancer.” i don’t think for me that there is a life after cancer – there is only a life with cancer.

and the new york times happens to be reflecting on just that topic. check out this powerful photo collage of some of the 12 million (!!!) american cancer survivors.