Archive for the ‘radiation’ Category

no pictures?

Monday, March 29th, 2010

people i am a little disappointed in you… as the post below makes clear, i would like to see at least a few artistic interpretations of my wound… i’ll give y’all a few more days. no need for fancy photoshopping – good ol’ ms paint will do just fine.

and speaking of pictures, my housemate and i went to his family’s lovely connecticut property and cooked up a real batch of freshly tapped maple syrup yesterday. pictures presently processing.

oh, and on the medical front: after complaining about the level of pain emanating from my shoulder, my nurse practitioner called me in for a look-see on friday. it’s not infected, as was her concern, but it ain’t pretty. they say i should expect at least two or three weeks of it getting WORSE before it starts to heal. ugh. i go back on wednesday – we’re keeping a close eye on the shoulder monster.

BEWARE THE SHOULDER MONSTER!!

Friday, March 26th, 2010

shoulder monster

RAWRG! *snort* NOM NOM NOM! GRGRRR!

i say again, ouch.

Monday, March 22nd, 2010

it’s late sunday evening, or early monday morning. i can’t sleep because my shoulder is bothering me. each breath stretches my skin in excruciating directions. and i have been warned that over the next two or three weeks that it will, along with my growing fatigue, continue to get worse. and i say again, ouch.

what a two or three weeks this will be. i am surrounded by chaos. our house is in utter disarray after a weekend of bedbug extermination. our belongings are heaped in countless trash bags, and each needed item means an intensive search. my pajamas… would i have put them with pants? or with underlayers? or maybe they were gathered up in the furious dash to ready the house for the exterminator’s arrival.  perhaps they will remain hidden until we are able to unpack, if and when all signs of the bugs have disappeared, in two or three weeks.

it’s been so long since i’ve lived out of bags. it is at once liberating and endlessly frustrating, as are most of the times i have lived out of bags. the single, over-stuffed backpack that sustained me through my african travels was my lifeblood. it carried all my worldly possessions: my recording equipment, a few changes of clothes, the occasional precious souvenir. i would lock the zippers closed with combination locks and then lock the bag to some immoveable object – the rod at the back of the luggage compartment of an ancient trans-tanzanian bus, the roof rack of a death-trap minivan, the plumbing in my hotel room. sometimes bags nearby would be even more fiercely protected, wrapped in a metal mesh with its own set of locks, secured with motorcycle-style cobra chains. of course, all my precautions notwithstanding, i was still the victim of a robbery, losing my recording equipment and my irreplaceable journal full of notes and translations and dreams. possessions are indeed fleeting.

so if i don’t return your call this week, or make it to your show, or properly respond to your facebook invite, it is probably because i am lost in a bag somewhere, looking for my pajamas and gingerly applying radiagel to the primal burn on my shoulder.

crisp?

Thursday, March 4th, 2010

“crisp.”

the oval of skin on my shoulder gets redder and redder each day. yesterday the radiologist said that by the end of treatment it would be “crisp.” that is not an adjective that i especially like to hear used to describe my skin. but again, i remind myself that this treatment may be the last for quite some time, so i suppose it’s worth putting up with it. i search my body regularly for odd moles (you remember the ABCDE of mole monitoring, right?) and lumps in the lymph system. it is not a search i relish. too many times i have experienced the terrible, frightening feeling that comes with discovering an anomaly. i have found most of my tumors well before they light up on a scan, and the finding comes with a sadness and frustration that i simply cannot properly express. it’s all just part of the roller coaster life of living with advanced cancer.

speaking of roller coasters: ballroom dancing is hard! foxtrot is easier; i must have learned it at some point at a wedding or some such. but the swing steps are a little tricky. i’m going to need some practice.

friends: don’t forget to come to jalopy theater tonight for anne bacon’s folk opera! it’s awesome.

here’s a preview of what’s in store tonight. there will not be a miniature steam train involved in the performance. as far as i know.

show business

Monday, March 1st, 2010

to my dear friends in the new york area: my old friend annie bacon is in town! we love anne and it is always nice to have her smiling face around. this thursday at 10 pm, she (and many of our friends) are performing an original folk opera at jalopy. it is an excellent place to see music, and is just a short walk from my house. i will be pressing through the growing fatigue of radiation treatment to attend, and thus you have no excuse for missing this one. if you would like to meet at sackett street and walk over with us, that would be just fine.

if you visit annie’s myspace, you can listen to the song “window moons,” which she generously wrote about visiting me and kathryn when we are old and gray. it is a very sweet and tender song. i was singing it in my head when we were married. “we’re looking forward to looking back.” lovely.

snow!

Thursday, February 25th, 2010

i am sitting in my cozy room, watching the large, heavy wet flakes of the nor’easter fall on the still, abandoned construction project across the way. this is a morning where i am glad i am not working, and the fact that i have a ten minute long appointment an hour away is not especially appealing. the physical drain of radiation is starting to catch up with me – at 9 pm i am ready for bed, which means i miss things like your awesome show at mercury lounge. (sorry elijah!) but more than the physical drain, it is the routine of being at the cancer center every day. i’m used to being surrounded by cancer patients all the time, and although the alopecia and weary, worried faces have taken some getting used to, nearly everyone there is ready with a smile. we’re all in this together, after all. the problem is that 34th street is not especially close to my house, and since they never built an uptown transfer between the F and 6 trains, it takes a while to get to my treatments – here’s an explanation from the times, saying a fix is coming soon. oh wait, it’s dated 2005.

speaking of the times, i left a comment on the PLX4032 articles (see below) and over 700 people clicked on groinstrong yesterday! i guess i should leave more comments with links to the site!

PLX4032: the saga continues

Tuesday, February 23rd, 2010

the intriguing and remarkably personally relevant new york times series on melanoma trial treatments continues today here. i don’t know about you guys, but for me this is riveting stuff!

this radiation cycle is going well – treatment number four and my shoulder is beginning to pinken up a bit. the fatigue is starting to catch up with me, but nothing heavy duty at the moment. if the scans (PET/CT, MRI, dual endoscopies and the camera pill) at the end of March show clear, then i will be officially declared in remission. a miraculous feat, as these articles do not fail to remind me. if my aggressive cancer should return (and just so you know, that has a moderate to high percentage of happening), these genetic treatments could be essential in beating back another wave of disease. i am watching with a very keen eye. it is beyond encouraging to see scans like these (left pre-treatment, right after 15 days of treatment.  notice the lack of massive metastatic tumors). daaaang.

plx4032 trial results

twenty days

Wednesday, February 17th, 2010

that’s not very many, is it? i only have twenty radiation treatments – nineteen after today. i’m not excited about having to be at the hospital every day for a month, but if this treatment makes me cancer-free, then man is it worth it!

i haven’t been posting much this week since i’ve been avoiding the computer – i’ve had a migraine since friday (!!!) and looking at a screen is not very pleasant. i’m waiting for my neurologist to call me back to talk about new medication options but haven’t heard anything yet. life with massive constant headaches is no fun at all! although having a lovely wife (!!!) to help me through it does take the edge off a little bit. :)

radiation on the way

Tuesday, February 9th, 2010

i have three new tattoos! there are even smaller than last time, tiny almost unfindable dots left shoulder right shoulder right abdomen. they were nice enough to use a ridge in one of the poppies as an alignment point, so my tattoo will stay unblemished. now i’m wondering if the radiation itself will cause any damage to my beloved poppies. i hope not!

i start radiation next wednesday. it’s only going to be four weeks this time and will be much less invasive – they were telling me that the last time they really went deep into my leg. makes sense then that a fair amount of the hair on my left thigh has still not grown back. one less spot to shave, i suppose.

a new tattoo!

Monday, February 8th, 2010

i’m getting a new tattoo today. i am so excited!

not really. it will just be a little tiny dot on my shoulder to line up the lasers for radiation. we’re doing a practice run today and then the real radiation will start in about two weeks, after they’ve had a chance to make all the calculations and such.

you may be interested in revisiting my photos from my last round of treatment. at least i don’t have to use the clamshell this time…