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seventh new york-iversary

Wednesday, March 20th, 2013

this past sunday marked seven years since i arrived in brooklyn. a love supreme was playing as my dad and i drove over the george washington bridge. the empire state building was lit green for st. patrick’s day. i was already missing minnesota and the comforts of home, and i was broken-hearted after an amicable and expected but nonetheless sad breakup. i wept and listened to sufjan stevens’ chicago:

i drove to new york
in the van, with my friend
we slept in parking lots
i don’t mind, i don’t mind

i was in love with the place
in my mind, in my mind
i made a lot of mistakes
in my mind, in my mind

march, contrary to poetic postulations, is truly the cruelest month, with biting wind rustling budding trees and wintry santorum spitting on pale sad-eyed bundles that once were happy people; even in march, when i miss california tremendously, the most, when the blooming tropical trees and the eucalyptus and bay leaves call to me: i’m still glad to be here.

a year into my time here, i was living the dream. i moved to new york hoping to work at the intersection of music, health care and african development – emphasis on hoping, because let’s face it, that’s an awfully narrow field. and somehow within weeks i went for what i thought would be an informational interview at the red hot organization and was offered a part-time position on the spot, working for a music label that produces compilations (amazing ones at that, e.g.) to raise funds for AIDS support organizations worldwide. um, what? obviously i was meant to be here, at that particular moment to do that particular work. and on the side, i put in my time between the sticks.

i was a wealthy drunk. bartending at magnetic field, a small rock n roll bar, was lucrative. a staff of one = no payouts. the pitcher full of dollar bills was my lifeblood. that, and scotch. but the true value of my time at magnetic field was the powerful and long-lasting connections to a deeply dedicated and supportive community. new york can be a tough town, and though i moved here knowing a handful of friends, i can’t imagine, i literally cannot imagine the course of my life without magnetic field and its denizens. along with seriously close friends and a seriously damaged liver, the bar brought kathryn into my life, which is (other than the gift of life, word to my moms & pops) is the greatest gift i’ve ever received.

a year in, and i was settled into my routine, working a couple days a week in my uber-fancy soho office, dining and drinking and sleeping my way around the city.

so it’s march 17th, 2007. a few days previous, i’d written on my old and sadly neglected blog:

do we take care of the people in our lives? do we care of ourselves? do you feel like you’ve done all you can to create positive forces in your life and in the lives of others? well, i’ve tended not to over the past couple years and it’s time for that to change.

let’s imagine, hypothetically, that we met that day, let’s say we went out to brunch, and you looked into my tea leaves and cast your i-ching sticks and threw a mean tarot and you predicted my future.

if you’d sat me down six years ago and said, in a few short years you’ll stop bartending and give up drinking, i would have laughed. i would have laughed heartily and ordered another bloody mary.

if you’d sat me down six years ago and said, in a few short years you’ll be married to the woman of your dreams, i would have been skeptical and amused.

if you’d sat me down six years ago, stared at the tarot cards in horror, saw the black dog in my tea, looked up from casting your sticks with a heavy sigh and said:

prepare yourself, because soon
you’ll be asked to endure years of agonizing surgeries
round after round after round of toxic treatment
side effects may include but are by no means limited to
loss of hairappetitesexdrivestabilityemploymentbodypartshappiness
also loss of life

you will lose count of the doctors and nurses and specialists for your braineyesshoulderhandsliverstomachkneefeet
not to mention the infectious diseases doc, you’ll need one of those
you will know nurses by name in the emergency room
and in the outpatient unit
and in the post-aenesthetic care unit
and on the oncology floor
you will have doctors, plural, on speed dial
you will lose count of the hours spent on hold
with insurance companies, hospitals, billing reps and collection agencies
there will be mountains of paperwork and towering spires of bills

you will make friends, friends who know your path
friends who share your pain and fear
and you will watch them die
withering away like a whittled stick, cut down to nothing

you will lose count of the thousands of needles that pierce your skin
colonoscopies will be old hat
same for highly radioactive scans
same for swallowing pills
same for swallowing pills that are cameras

listen, soon you will find yourself at 28 years old
you will be 28 and you will have cancer
and it’s serious, it’s bad
it’s in your lymph nodes (and you will learn what a lymph node is)
some people last weeks, months if they’re lucky
that the five-year survival rate for your diagnosis is eight percent

if you’d sat me down six years ago and said all this:

i would have been terrified. quite reasonably, i think.

but -

if you’d sat me down six years ago and said:

the path you will walk won’t be easy
no, it will in fact be incredibly hard
the most difficult thing you’ve ever done

but down that path, though it is quite far, and treacherous,
there is a new you
a better friendhusbandloverbrotherson
with more compassion and empathy
with a deeper sense of purpose
with a greater respect for life
you will love more strongly
you will listen more carefully

you will take care of the people in your life
you will take care of yourself
you will do all you can to create positive forces in your life and the lives of others.

if you’d sat me down six years ago and said, in order to become the person you were meant to be, you’ll have to go through hell. there will be blood, and pain, and sacrifice, and loss, but you will be alive, and you will be in love, and you will be loved:

would i have chosen to walk the path?
would i hesitate?
if i knew in no uncertain terms that the cancer would kill me, and soon, would i force the issue? would i ask modern medicine to prolong my life, and possibly prolong my suffering, and the attendant suffering of those i love and those who love me?

i would – though i understand and respect those who make the choice to live treatment-free for as long as they’re able.

if you’d sat me down six years ago and said, in 2013 you will be a budding abstract painter, i would answered your survey by filling bubble number five, for strongly disagree.

but here i am, and here we are, and, to finish off this obnoxiously long and winding post, here is this:

you might remember that i entered a cancer art contest last year – though my submission (“hand in hand” – click to jog your memory) didn’t win (a travesty!), it was still a valuable exercise, and i’ve had two requests so far to recreate it. today i delivered “hand in hand III,” a gift to my excellent pain management doctor. i’d never worked on such a large scale before – the canvas is 48″ x 60″, 4 feet by 5 feet. i made sure to take some pictures before i brought it to the office (in a hired van, as it wouldn’t come close to fitting through the subway turnstiles). see below and click to embiggen. i have another eight (!!) outstanding commissions.

i’m glad i chose new york.

hand in hand III

Posted in art, chemotherapy, clinical trials, complaining, gifts, gratitude, hospital visits, images, links, loss, love, melanoma, music, pain, painting, philosophizing, poetry, radiation, religion, rock and/or roll, sadness, skin cancer, tarot, weather | 7 Comments »

moving forward, withdrawing back

Monday, February 18th, 2013

hello, friends. i’ve missed you. it’s a remarkable testament to how greatly my health has improved that my three month check-up with my oncologist last week was so “grossly unremarkable” that i didn’t even take the time to post, or even chat about it with my folks. my six month scan will be in may – that’ll be a big one and won’t go undocumented.

and it’s not the only news i’ve failed to mention. i’ve missed a whole mess of opportunities to celebrate the ones i love these past few weeks. my sister, my mom, my late grandfather, my loving wife (not to mention my uncle, the spectacular ms. bacon and more) – all had birthdays, and each deserved their own post as to their extraordinariness. it’s impossible to measure the impact of these aquarians in my life. as a self-absorbed leo, i’ve found myself from day one depending on a bevy of aquarii (aquariuses?) to keep me grounded, honest and in check. they tell me the things i know deep down but am too proud to truly admit to myself. without their guidance, i would be half the man i am today (and obviously re: my mom, i would be zero percent of anything). yes, i am lucky to be alive – though this path of negotiating my illness is one i never would have chosen, as i’ve explained many times, the greatest gift it has given me is the ability to truly and deeply acknowledge and understand how lucky i am that i am joined in life by so many strong, remarkable people. my apologies for the mass, “i love you all” message – it’s the best i can do for the moment.

title, part one: moving forward. kathryn and i have moved downstairs in our shared house. you would think (read: *i* thought) just picking everything up and carrying it downstairs wouldn’t be such an arduous task, but you (i) would be wrong. we also painted, which, due to the new (new to me anyhow) technology of self-priming paint (so awesome!) and some helping hands from friends, the full-spectrum gray (“cosmopolitan”) and the “adobe orange” accent wall went up easily. two or so months ago, i began twice(-ish) weekly personal training sessions with my dear friend captain quinn – thank the good lord i had a few weeks worth of sessions under my belt – if i’d tried to move all our (many) belongings even six months ago, it would have crippled me for days. it’s always a bit of an obstacle course, negotiating communal living, especially now, as a married couple. but we adore our present housemates and even though there are an awful lot of piles to sort through (since we neglected to consider boxing up), once we’re settled in we’ll have more space – kathryn will get a dedicated crafting station, and i’ll be able to paint from home. it’s going to be great.

title, part two: withdrawing back. this past week has been one of the worst in recent memory, and for the first time in quite a while, it’s not because i’m stuck in my head and/or depressed.

the bRAF inhibitor genetic treatment (aka zelboraf) that stopped my disease in its tracks had some pretty unpleasant side effects; most troubling was the debilitating joint pain, which floated from hands to feet to neck to hips to ankles seemingly at random. back in 2011, a NY times article described the great promise of the drug, but it also told the story of a patient who “said the drug caused such extreme pain at one point that “I called in the children and said, ‘I’m done, I can’t do this any more.’ ”” i was there once, and after a particularly unpleasant experience with my first pain management specialist, i found a marvelous man by the name of dr. tim canty, who has since gone on to treat multiple melanoma patients dealing with the same crippling pain. it must have been about 18 months ago that he put me on exalgo, a new (and pricey) time-release pain medication that made a great difference to me, without many of the hazy, sedating effects of previous drugs i’d tried (methadone in particular). because it was a time-release capsule, the narcotizing effects were significantly diminished, as was my inclination towards possible abuse.

but at the start of this month, our insurance changed (nearly all for the better) and the new company decided not to cover the drug (a month’s supply runs near $1000, compared to other opioids which run pennies on the pill). in the past, when i’ve stopped taking medications of this magnitude, i’ve had time to step down, milligram by milligram. this time, i went from 24 mg a day for well over a year to zero, cold turkey. exalgo is hydromorphone – it’s essentially morphine. withdrawal is not a strong enough word to describe the torture i’ve endured over the past week. today is the sixth day and i’m still not back to 100%, though the worst is past. it didn’t help matters that i was fighting (and losing the battle with) a vicious cold; i’d say the best word to describe my week was wretched. there was retching, and there were bugs under my skin, and long, sleepless nights of tossing and turning and sweating out the toxins. thankfully there were no nightmarish babies on the ceiling a la trainspotting (watch with caution).  i’m nearly free of the drug now, but the week is already lost, and with it a chance to wine and dine my lady on valentine’s day (not my favorite holiday, but still).

my body is in a place where the pain relief just isn’t necessary any more – i’m stronger and healthier than i’ve been in a long time – but my goodness, i wish i’d had a bit more control over the process. i’ll be awfully glad when i’m at full strength again.

Posted in clinical trials, complaining, gratitude, pain | 1 Comment »

scan results today!

Wednesday, June 20th, 2012

a few years back i posted a tony hoagland poem, “medicine.” i love tony’s poetry and am grateful to brian newhouse for gifting me one of his books. the poet and his mother both have dealt with crippling illness, so he knows from whence he speaks when he says:

Daydreaming comes easy to the ill:
slowed down to the speed of waiting rooms,
you learn to hang suspended in the wallpaper,
to drift among the magazines and plants,
feeling a strange love
for the time that might be killing you.

i’ve grown so accustomed to doctor’s offices, billing agents, the mountains of paperwork, byzantine insurance policies and more that i’m seriously considering volunteering as a patient support agent, sharing my now-expert knowledge of the workings of the administrative maze that comes with being chronically ill. i find it criminally negligent and offensive that the patient is responsible for overseeing significant parts of communication between care providers and insurance companies. the ill have so much more to worry about. on an average week i spend two or so hours on the phone with medical business – managing my appointments, getting approval for necessary medications and crucial care, and of course fighting bills that shouldn’t exist. i’m sure at this point that my credit rating is torn to shreds – i’ve had a number of bills (though none for awhile) go to collections, nearly all through no fault of my own. i talk to a doctor’s billing office and they say everything is fine, ignore the bills, but two months later i’ll get the mail and discover aggressive and condescending demands for payment. then i call the care provider directly and they say oh, i can’t believe that happened. that shouldn’t happen.

damn right it shouldn’t.

but i digress. this afternoon kathryn and i are headed to my oncologist to hear about the findings of my abdominal and pelvic MRIs. i tend to have a good sense of my body and if the cancer is causing problems, but at the moment i’m feeling as healthy as i have in a long time. granted, i have a mild cold, but that’s actually progress – two years ago, a cold would have sent me to the ER. i’m glad i have a cold.

so i’m not especially concerned this time around, though of course my cancer can always surprise me. i’ve previously described fighting melanoma as similar to punching jello. you attack and say, oh look, it’s gone. but then you look closer only to find that, in fact, it’s still there; it just moved around a bit. it’s remarkable, though, that since my diagnosis, treatments for melanoma have made huge leaps in extending lives and even bringing patients back from the brink of death to live long and (mostly) healthy lives. most of those drugs didn’t exist in any usable form when i had my first surgery – ten years ago, i would have been out of options in 2010. i’ve heard stories of people dying within weeks after discovering their advanced melanoma. obviously, i consider myself very, very lucky. and also obviously, i’m incredibly grateful for all of your support through all of this. i can’t say it enough: thank you.

before i sign off, i wanted to share a recap of the cancercare gala last week. i’m still basking in the satisfaction of a job well done and the remarkable response my remarks garnered – i’m meeting next week to discuss potentially working with a documentary team that’s producing a film about the history of cancer. i’ll tell you more about that after the meeting.

my appointment is at 4:30, so check back in the evening for results.

here’s the recap! there’s also a facebook gallery of photos from the evening here.

Annual Spring Gala Raises More Than $520,000 in Support of CancerCare

CancerCare CEO Helen H. Miller welcomes the evening’s guests

More than 320 guests attended CancerCare’s Annual Spring Gala this past Thursday, June 14 at The Mandarin Oriental in New York City. The event raised more than $520,000 in support of our free services for people affected by cancer.

 

Paddles up!

The evening’s festivities included both a silent and live auction featuring exclusive, one-of-a-kind items including “Best of New York City” experiences, exotic luxury getaways, designer merchandise, and gourmet food and wine packages.

Actress and advocate S. Epatha Merkerson

Actress and CancerCare advocate S. Epatha Merkerson was honored with CancerCare’s “Help & Hope” Award, which was presented by Academy Award-winning actress Whoopi Goldberg. Merkerson, best known for her role on the long-running NBC series “Law & Order,” is a longtime advocate for lung cancer research and awareness. Her “Law & Order” character, Lt. Anita Van Buren, notably faced a cervical cancer diagnosis in the drama’s final season, bringing awareness to women coping with the diagnosis.

CancerCare client Jonah Eller-Isaacs

CancerCare client Jonah Eller-Isaacs was also honored during the evening, taking the stage to deliver a moving account of how CancerCare helped him cope with a diagnosis of stage IV melanoma at age 28. Jonah said:

Every time I’ve felt overwhelmed…CancerCare has been there. They’ve done so much more than help me cope – they’ve helped me develop lasting tools to manage the heavy burden of my diagnosis. My counselor, Sarah Kelly, has taught me not only how to deal with my illness, but how to be a better, stronger version of myself.

Learn more about Jonah, and read his speech in its entirety, on Jonah’s blog, GROINSTRONG.

The evening also featured a moving video of three CancerCare clients sharing their stories of how CancerCare helped them cope with their diagnoses:

View a photo gallery from the 2012 Annual Spring Gala on our Facebook page.

CancerCare sincerely thanks all of our supporters and sponsors who helped make this year’s Gala such a success!

Whoopi Goldberg with CancerCare clients Jonah Eller-Isaacs, Paulette Kennedy, and Donna Spano

Posted in amazing, cancercare, clinical trials, complaining, events, gifts, gratitude, images, links, literature, melanoma, philosophizing, poetry, skin cancer | Comments Off

when groinstrong met poopstrong

Thursday, June 14th, 2012

hey kids. sorry for the posting delay. i’ve either been busy or asleep (but not both) and honestly, there hasn’t been a whole lot to report, at least health-wise. i’ve got a scan coming up on monday morning (MRI & CT scans of the abdomen) and the results on wednesday should give me a good idea of how the next few months will look regarding treatment. if the scan is clean, i get to continue living off-treatment, and every day off-treatment is a gift. when you’re in the midst of chemo (or a toxic clinical trial), it’s not easy to identify all of the ways that it’s poisoning you. it’s only once the treatment ends that you realize, wow, my short-term memory is back, or, gee, i can multitask again, or even, hey, i can use my hands and feet without excruciating pain!

this past weekend i was able to meet up with my new buddy poopstrong a.k.a. arijit - it’s always refreshing to have a chance to chat with other cancer survivors and corroborate on the misery of survivorship. over the course of treating his stage IV colon cancer (ouch.), arijit hit his lifetime insurance cap and has raised over $100,000 to cover the gap, helped by news stories and prizes donated by celebrities – of course, his indomitable spirit surely makes a difference. how would you manage your daily life with an ostomy bag? yeah, thought so.

and speaking of speaking with survivors, i’m just reviewing my remarks for this evening – i’ve been invited to cancercare’s annual gala tonight at the mandarin orient at columbus circle. i’ll be representing the survivor community and speaking for a few minutes. a town car is picking me up in a few hours. swanky! i’ll post the short speech here tomorrow – i don’t want to give away the surprise.

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Posted in amazing, chemotherapy, clinical trials, gratitude, pain | Comments Off

status: it’s complicated.

Tuesday, May 1st, 2012

i am a little tired at the moment. you see, i’m missing a bit of blood.

that is 22 vials of my blood, drawn for comprehensive tests on my liver. so i think i’m entitled to a little nap.

but before i crash out and lose another afternoon to fatigue, i wanted to make sure to get us all on the same page.

first, i hope your may day has been lovely, whether you’re celebrating in the twin cities or working your way through holding cells after occupy protests. my present insurance is through kathryn’s union, and the policy has saved us thousands of dollars, if not tens of thousands, since we were married. so, i like unions, and i don’t mind if protests interrupt my day. though i’m grateful i was able to travel freely today.

as business wound down on friday, my doctors switched the upper endoscopy to a dual procedure. so my sunday, instead of badminton in the park, was rather less pleasant. although at this point the colonoscopy prep is old hat for me. still, it’s shitty. heyo!

the endoscopy found a “large” lesion of melanoma in my small bowel. i don’t know what “large” means in my GI doc’s report, but she’s recommended a bowel resection. i’m meeting with my oncologist next week and then my GI surgeon the week after, and at the moment i’m leaning toward avoiding surgery. as my GI surgeon pointed out the last time we found ourselves working with intestinal tumors, we could cut the lesion out, with all the risks and discomfort that come along with bowel resection, and a week later we could find another cancerous lesion an inch away from the previous resection. again, in my GI surgeon’s words, it’s a local solution to a systemic problem. of course, i’m not rushing in to anything, and i need a lot more information about size, location and potential complications if the lesion causes bowel obstruction or perforation.

on top of dealing with all of that, i spent the morning with my new hepatologist to talk about possible treatments for my hepatitis C. we’re trying to get as much information as we can before deciding on a course of action – as i’ve heard, the hep C treatments are still pretty nasty, even as their success rate have skyrocketed (from 20% to 80% cure rates). if we can get my liver to stabilize without dramatic intervention, it might allow us to move forward with the IPI, which could possibly get rid of the lesion, which would mean the surgery would be unnecessary.

you see what i mean when i say it’s complicated.

so to get more information, she took about a pint of my blood (i think she’s a vampire doctor) and ordered an MRI of my liver. i was able to fit in the MRI this afternoon, and now i’m finally home. i’ll have more information in a couple weeks. my hepatologist hopes that we can avoid treating the hep C as long as possible – it’s a year of treatment, and there are new drugs currently in clinical trials that are showing great promise without as much toxicity. i asked about my possible participation, but patients must be five years cancer-free. so that’s out for now, but if all goes well they’ll be available soon.

that was an awful lot for just two days. i’m sitting down with my oncologist next monday to talk through all of this. but for now, i’ve been poked and prodded inside and out, emptied of too many bodily fluids, injected, examined, put inside a jackhammer and sent home.

it’s time to rest for a bit.

Posted in clinical trials, hospital visits, images | 3 Comments »

extreme possibility.

Wednesday, April 4th, 2012

i’ve done some reading up on yervoy/ipi/ipilimumab, the treatment that i’ll begin on tuesday. you can browse to your heart’s content here, if you like. but be forewarned: it isn’t pretty.

most of the dramatic side effects occur rarely, if at all. still, we’ve got to be prepared for some nastiness. i had a long talk today with a friend and fellow melanoma survivor. his disease has taken a remarkably similar path: mole on the left leg, migrating to the lymph nodes of the left groin, then the right groin, then distant metastases and finally internal organs. he managed to finish three of the four infusions of ipi before ceasing the treatment. also ceasing: any production at all in his adrenal and thyroid glands. ouch. rare side effects – the 1% only matters if you’re in the 1%.

if all goes well, i’ll receive four infusions, three weeks apart. usually the side effects don’t start at all until well into the cycle, and sometimes it can take months before they really get rolling. i’ve had to cancel my planned first descents trip to go kayaking in glacier national park – i was scheduled to arrive a week after my final treatment, and it would be risky to put myself so far out into the countryside at that time. ditto for joining kathryn’s visit to see her friends in zambia. oh, how i would love to return to africa. but if kalispell is too far-flung, then the swamplands of botswana are surely out of the question.

once again, i have to thank all the powers that be for my health insurance: each infusion costs $30,000. $120,000 in total. and then there’s the potential costs of visits and treatments to manage any side effects.

still, it’s worth it. i’d pay even if i didn’t have insurance. and by “me,” i mean “me and you and everyone we know.”

i’ve never faced such a realm of extreme possibility. a full 10% of patients who receive yervoy are completely cured. that’s not a typo. some people have lived for years now post-ipi without showing any signs of their cancer. that would be a remarkable gift.

of course, there’s the other 90%. and within that 90%, many, like my friend, have come out the other side of treatment permanently damaged in life-altering and life-threatening ways. given my hepatitis-C-positive status, we’ll have to vigilantly monitor the long-term effects on my liver. liver failure is a real possibility.

so here i stand, with life, a beautiful life free of cancer on one side, and on the other pain and suffering and death. never before have i faced a treatment that could produce such dramatic conclusions. sure, i’ve seen a couple clinical trials that listed as a possible side effect: “death” – but this feels more real this time, especially given the fragile state of my interior workings. i’ve escaped the pressure by watching cartoons and catching up on fantasy novels and lots of comic books. but it’s hard to go through with the day-to-day when so much hangs in the balance.

as always, i so appreciate all of your support. i’m sorry if i haven’t written some of you back; it’s taken a lot just to keep my chin up and put on a brave face. still, your kind words and your continued donations give me strength. they keep me going in the face of tremendous unknowns and extreme possibility.

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Posted in clinical trials, gratitude, links, loss, melanoma, philosophizing | 5 Comments »

no protein. no vaccine.

Friday, March 30th, 2012

today is not my favorite day.

the sun may be shining, the birds chirping, the soft spring air rustling through the freshly budding trees.

all fine and good and welcome, even after our new york non-winter.

but late this afternoon i missed a call from my oncology team. their message was not good news.

it turns out, after all these weeks of waiting, that my body does not excrete the NY-ES-01 protein. so the vaccine won’t work.

so, on to our new plan:

yervoy, aka ipilimumab.

the drug is FDA-approved for treatment of advanced melanoma, and has shown great promise. patients with bodies riddled with metastases have, after a single infusion, shown a remarkable – miraculous, really – response. tumors haven’t just slowed; they’ve completed disappeared. even patients who didn’t react quite so dramatically have made great progress against their extremely advanced disease.

which sounds great. and i should be optimistic, and i am.

however.

yervoy is extremely toxic, and the range of side effects is startling and unappealing, to say the least. it’s especially problematic that the drug is extraordinarily destructive to the liver – and since i already have hepatitis C, i will be at significant risk of liver failure.

also known as death.

though i’m hesitant to share this with you, it’s pressing heavily on me and it always helps to name one’s fears. here are the possible side effects of yervoy:

  • Inflammation of the intestines(colitis) that can cause tears or holes (perforation) in the intestines. Signs and symptoms of colitis may include:
    • diarrhea (loose stools) or more bowel movements than usual
    • blood in your stools or dark, tarry, sticky stools
    • stomach pain (abdominal pain) or tenderness
  • Inflammation of the liver(hepatitis) that can lead to liver failure. Signs and symptoms of hepatitis may include:
    • yellowing of your skin or the whites of your eyes
    • dark urine (tea colored)
    • nausea or vomiting
    • pain on the right side of your stomach
    • bleeding or bruise more easily than normal
  • Inflammation of the skinthat can lead to severe skin reaction (toxic epidermal necrolysis). Signs and symptoms of severe skin reactions may include:
    • skin rash with or without itching
    • sores in your mouth
    • your skin blisters and/or peels
  • Inflammation of the nervesthat can lead to paralysis. Symptoms of nerve problems may include:
    • unusual weakness of legs, arms, or face
    • numbness or tingling in hands or feet
  • Inflammation of hormone glands(especially the pituitary, adrenal, and thyroid glands) that may affect how these glands work. Signs and symptoms that your glands are not working properly may include:
    • persistent or unusual headaches
    • unusual sluggishness, feeling cold all the time, or weight gain
    • changes in mood or behavior such as decreased sex drive, irritability, or forgetfulness
    • dizziness or fainting
  • Inflammation of the eyes. Symptoms may include:
    • blurry vision, double vision, or other vision problems
    • eye pain or redness
my word that sounds horrible.

please know that although this post is filled (reasonably so) with awful-sounding side effects, along with great bitterness and disappointment, that my frustration is not overwhelming, and kathryn and i are doing alright. this is an unfortunate turn of events, but at least there are still options available to us – if i was at this point ten, or even five years ago, i would be out of options, save for more toxic (and not especially effective) chemotherapy or even intestinal resection (taking out a foot or two). next month marks a full four years since my diagnosis. i have already beaten the odds again and again, and i will continue to do whatever it takes to continue.

i don’t think i’ve shared with you the final tally of your generous donations towards my medical expenses: in the end, i tallied over five thousand dollars from over 100 individual donors. incredible. i mention this because your gifts are so very appreciated, in particular at a time like this. i presently have a zero balance due, and i honestly cannot remember the last time that was the case; it has been at least a year, if not two, that i didn’t have a stack of overdue bills hanging over me.

but your financial generosity is so much more than that – though five thousand dollars is an astounding amount for a casual asking. i know i’ve thanked you many times before: here, in conversation, wherever i see you, whenever i find the time to say or send a proper thanks. kathryn and i could not manage this without you.

it is a rare gift to see so clearly the love that comes from all corners; if there is a blessing in this unceasing, unyielding battle, it is to feel so strongly the palpable love and caring of the community around me, always present whether near or far. there is no dollar amount equal to that knowledge. and the knowing allows me to read through that sickening list above without completely breaking down. i know that even if the worst of the side effects should plague me, that you will be at my side through it all.

and for that i am eternally grateful.

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Posted in chemotherapy, clinical trials, complaining, gifts, gratitude, loss, love, melanoma, pain, sadness, skin cancer | 5 Comments »

seven to ten days of more waiting.

Tuesday, March 13th, 2012

my oncology nurses called late on friday to let me know that the drug company had messed up on my sample and it would be another 7-10 days before they could release the results. it’s cool; it’s not like this is one of my last “nice” options – if i don’t get into the trial, the severity of treatments rise dramatically. yervoy (aka ipilimumab) is a possibility, but that drug is extremely tough on the liver. i signed up for the drug in trial form and it was, you may remember, the night before the trial began that my doctor called to inform me i had hepatitis C. if the NYES01 protein isn’t present, we may risk trying the drug regardless, though i’d rather not suffer liver failure. when i asked my team how hep C-positive patients responded to yervoy, they said, “we’ll have to monitor you very, very closely.” i’m going to interpret that as answering in the veiled negative.

so the waiting continues. it seems like i’m waiting for an awful lot right now – i was supposed to start a new pain management regimen to relieve the awful aches and soreness in my legs, but i’ve had a terrible time getting the drug. exalgo is a new time-release hydromorphone, which would reduce my need for fast-acting (and incredibly narcotic) pain relief every 4-6 hours. the drug is so new that it’s rarely prescribed. when i called my local (totally awesome and supportive) apothecary, they called me back and said they couldn’t afford to stock the drug – my script is for just 14 pills, to try it for a couple weeks, and the only supply available is a jar of 100 pills – that costs them $2,000. ouch. the pharmacy can’t afford to risk stocking it since it’s not used much. so i tried every pharmacy chain in manhattan (rite aid, duane reade, walgreens, CVS), plus four or five local non-chain stores, and none of them could get it, at least without a long waiting period. i ended up finding a pharmacy in long island that could overnight it to me – i ordered it on thursday and fedex hasn’t been able to catch me at home since, which is odd because i’ve been here the whole time. hopefully i’ll be able to start it soon.

in the meantime, i have my second abstract expressionist painting class tonight! i’ve talked before about how i act twice my age, what with the bridge playing and constant complaining about my aches and pains - though, if you ask kathryn, she’d say i act more like one-fifth my age. i always said i taught preschool so that i could spend time with my emotional peers! so it comes naturally to spend time at the painting class – it’s me and fifteen women, all over 50. i based my first painting on a northern minnesota sunrise that i tried to recreate from memory – the picture is below, and when i get to class i’ll take a snapshot of my completed painting now that it’s dry.

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Posted in art, clinical trials, complaining, images, melanoma, pain, skin cancer | 2 Comments »

look who’s honoring me now!

Wednesday, October 5th, 2011

just so we’re clear, that’s a reference to one of the many megalomaniacal segments on the colbert report. i’m not nearly as self-absorbed and arrogant as colbert’s television persona. right? … right?

but i do have some friends who are honoring me, or at least thinking about me as they run like the bats out of hell that they are. as i’ve mentioned before, my friend, fellow cancer survivor and all-around badass graceann is running the new york dublin marathon to raise money for the leukemia and lymphoma society – one of the many support organizations that are absolutely crucial in keeping us “cancer crushers” (to borrow a phrase from jonny imerman) happy, financially stable and, well, alive. [correction: graceann will be running the dublin marathon. no, not the bay area suburb. dublin as in ireland. that makes it SO much cooler.]

graceann is just a few hundred dollars away from meeting her fundraising minimum, but with only two weeks to go, she’s still about $1000 short of her ultimate goal of $7,000.

i’ve seen the fundraising power of the groinstrong community – would you believe that y’all have raised over $15,000 for my medical expenses? well you have. and that’s not for a 501(c)(3) non-profit; you’ve taken no deductions for your gifts. over three-plus years, my out-of-pocket expenses have totaled more than $30,000. so you’ve paid for half of all of my bills. that’s staggering. let’s not forget, though, that without insurance, those bills would already be over $2 million dollars. seriously. i’ve counted. now that’s staggering.

so: please give to graceann’s efforts as generously as you’re able. you can visit her fundraising site is here – and be sure to watch her hilarious video ask here. don’t forget that for a donation of $50 or more, you’ll get to choose a song to play in her headphones as she pounds the new york irish pavement. i’ve requested that she bust her butt to hall and oates’ you make my dreams. god i love that video. especially the way that oates pops up close to the camera. so awesome.

but the asking is not over yet! please keep reading and clicking links and giving generously.

my new friend emily is also preparing for a run – this one is a 5K, the terry fox run for cancer research. after only a conversation or two between us, emily was generous enough to dedicate her efforts to my continuing battle against this awful disease. though her financial aspirations aren’t nearly as lofty, she’s still pushing herself and making sacrifices to help others. that pretty much makes her a badass in my book.

right now emily is just $30 short of her goal! every dollar counts when it comes to the ungodly expensive costs of cancer research – research that is very much a crucial tool in keeping me alive and healthy as we speak. so please consider giving to emily’s run as well. her fundraising page is here.

maybe you can give two matching gifts, one to each runner? that sort of philanthropy has got to pay off in the end, whether it’s in a cloud-based heavenly afterlife or a rung or two upwards on the karmic ladder. think about the long-term benefits of your generosity, whether it’s the continued funding of research or simply an expanded sense of self-worth and satisfaction. please give whatever you are able.

thank you, dear readers, for taking the time to hear about these important fundraising efforts, and thank you in advance for the support that you can provide.

a very brief update before i head to the 16th medical professional in my phone book – not an exaggeration. how crazy is that? too many doctors is a great title for a song or poem. help me remember that.

in just a moment, i’m headed to an orthopedic specialist to discuss the hairline fracture and degenerative state of my left hip. i doubt we’ll take any action beyond bone density testing – there’s very little they can do about it short of a hip transplant. and i’d rather avoid that for now. he’s actually in the same office as my knee surgeon.

after ten days back on zelboraf, the side effects are taking hold again. the itching isn’t nearly as bad this time, but my goodness this joint pain is intense. i’m on just about the maximum amount of painkillers that a human being can take without resorting to intravenous injections – we’re talking multiple daily doses of both dilaudid (3-4 times stronger than morphine) and methadone. the pain, at the moment, is in my right shoulder, both wrists, the individual joints at each knuckle on both my fingers and toes and the arches of my feet. it likes to move around from joint to joint, moving without warning. you’re familiar with the pain scale of 1 to 10, yes? i’m living at a constant 8. or even 8.5. and it’s just as unpleasant as you imagine. on top of that excruciating pain, i’m still going to physical therapy to work on my knee. luckily my therapy staff is very accommodating and understands that my pain is such that it prevents me from a significant amount of activities. so the knee continues to approve – now it’s just the rest of my body i’ve got to figure out.

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Posted in clinical trials, events, gifts, gratitude, links, melanoma, pain, physical therapy, skin cancer | Comments Off

a busy medical week coming up

Thursday, September 15th, 2011

you might say i’m getting my doctorate in doctors. or you might not. either way, i have appointments tomorrow (pain specialist), monday (dermatologist), wednesday (ECG) and thursday (oncology) – not to mention that any point my new supply of zelboraf will arrive in the mail and i’ll have to restart the regimen. i’ve switched from being part of a clinical trial to receiving the drug through my insurance, which, other than a slew of phone calls i’ve received, has been remarkably easy. when i hear stories like that of ron paul staffer kent snyder, who died of pneumonia-related complications owing more than $400,000 (and from what i’ve read, his lack of insurance contributed significantly to his continued illness and death) i know that i am so incredibly lucky to have health insurance – let’s not forget, for you newer readers out there, that my insurance kicked in just six weeks before my diagnosis. i’m also incredibly lucky to have a wife – for many reasons – but most pertinent to this conversation is the fact that i have a wife who has health insurance, and phenomenally good insurance at that. her hard work every day (and sometimes into the night) gives me the space to rest and heal when, say, just hypothetically, the drugs i’m taking make it almost impossible to walk.

thanks honey!

Posted in clinical trials, gratitude, hospital visits, love | 2 Comments »

the seven year itch

Tuesday, August 30th, 2011

i haven’t seen that movie, so i’m not sure exactly what i’m referencing. but i’m using the title to share with you the first side effect of the new clinical trial – crazy, mind-bending itchiness. i was up late into the night, waiting until i was so tired that i would pass out instead of laying in bed trying to reach the next out-of-the-way spot to act up. the doctor mentioned that with this drug the side effects can kick in within 24 hours, but i didn’t expect those four pink pills to have such a dramatic and nearly instantaneous effect. the side effects tend to settle down after a few months – hopefully it won’t be nearly that long. seven years of itchiness is a long time.

but i have more important news to share. my friend graceann stole the show at our monster mash-up halloween party last year as lady ga-ghandi. but dressing up in mildly offensive costumes isn’t her only expertise. she’s also running a marathon! she lives in the neighborhood and every so often she’ll run by me and i’ll give her a high five. those are awesome times!

graceann is a card-carrying member of the cancer club, having beaten hodgkin’s lymphoma with the biggest beating stick she could find. this year she’s making a push to raise $7,000 to support the leukemia and lymphoma society. way to go!

but 7K is a whole lot of money, and she could use your help. after finishing this post, i’m going to give her $50. if you match it, then i will tell you that you’re awesome. that’s a pretty spectacular prize, if you ask me. of course, there may be other, more valuable words of encouragement that i will send your way if you donate more. i might even say that you are amazing. but really, that’s reserved for top echelon donors. also, for a donation of $50 or more, you can request a song to be a part of the official marathon playlist that will be ringing in graceann’s ears throughout the run. here’s your chance to inspire her efforts with some fantastic music!

here’s a link to her fundraising page. groups like the LLS make a significant difference in the lives of those living with and recovering from cancer, as i know all too intimately. i’ll bet this video will inspire you to give as generously as you can.

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Posted in clinical trials, gifts, gratitude, links, videos | 2 Comments »

presenting: ZELBORAF!!!

Wednesday, August 17th, 2011

that is a helluva name, right? that’s the name of my new drug. sounds like a super-villain from a distant planet. beware the wrath of zelboraf!

big news this morning – it’s been FDA approved! that doesn’t really change anything for me treatment-wise, but still, nice to know that someone thinks it works.

from the above article: The most common side effects reported in patients receiving Zelboraf included joint pain, rash, hair loss, fatigue, nausea, and skin sensitivity when exposed to the sun.

wheeeee!

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Posted in clinical trials, melanoma, skin cancer, sunscreen | 3 Comments »

lanes.

Tuesday, August 16th, 2011

so: the day after. getting crappy scan results is always tough to absorb. thank you all for your comments, emails, facebook posts, etc. your love is tangible and i really do feel it coming from across the country. it makes a difference. it makes me stronger. it makes me want to hug you all.

in one of my conversations with forrest church before he lost his battle with cancer, we talked about the communal burden of living with disease. it doesn’t just affect the patient, though obviously we bear the brunt of cancer’s path of destruction; it is the family, the friends, the community, those of you who walk this path with me – at times like this, it can feel as if you all have cancer too. thankfully, that’s not the case. still, i know, even as you all offer words of support and love, that it is not easy to bear witness. i’ve seen the reactions in your eyes, the faces of frustration and despair. i’m so glad that you’re all with me, but i wish this journey didn’t involve so much collective pain and torment.

so: in regards to this newest development, i want to make an important point – this new treatment is quite similar to the drug i’ve been taking since last september. whereas the old drug, a MEK inhibitor, blocked one of the protein uptake channels in melanoma cells, the BRAF inhibitor does the same, but with the RAF uptake channel. want to know more? check out the BRAF wiki. mostly i find the deep science overwhelming, but i think i get the essentials. and i know it does what it is supposed to do.

the lesson to take away, then, is that things will continue on, mostly the same. the rash and acne will get better, which is nice. the most common side effects, though, are the development of basal cell and squamous cell carcinomas – early stage skin cancers that are easily removed. so we (me and my new dermatologist) will keep a close eye on that, and it’s likely we’ll have to do some cherry-picking now and then. still, nothing i can’t handle.

also: i don’t need any dramatic, life-altering surgeries – there will be no contests to decorate any hideous scars. i have to admit that was pretty freakin amazingly super awesome.

and also: there will be no sickening, nausea-inducing chemo, no depressive infusions, no bathing the abdominal cavity in heated chemotherapy. (ew.)

the biggest downer, then, is the loss of the coming february, and the ensuing celebration i was planning. if i’d scanned clean until then, my doc would have declared me finished with the trial, and i would’ve had a break from all treatment. that would have been nice. it seemed a realistic target, to have a moment, a week or two, or even a few months of closure. but it was not to be.

remarkably, i’ve found an eloquent graphic expression of the cancer survival experience. some of you probably know the webcomic xkcd – it’s super nerdy. i think the artist knows someone going through cancer treatment – hence the recent strip. i know it’s small – click to embiggen in a new window – you’ll want to zoom in a bit too. you can also download the image here.

to quote the comic: “man. fuck cancer.”

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Posted in cartoons, chemotherapy, clinical trials, gratitude, love, melanoma, pain, philosophizing, radiation, skin cancer | 7 Comments »

this never gets any easier to say.

Monday, August 15th, 2011

kathryn and i have just returned from the doctor. the news isn’t great. it could be worse, it could always be worse. still, the most recent scan shows problems around my intestine – a troubled area for some time now. i’ve scanned clean since february, but it’s been difficult to get a proper handle on my swollen bowels. this scan, though, shows what is clearly (in my doctor’s eyes) more melanoma. bummer.

on the other hand, we’ve been prepared for this moment for some time now. the original clinical trial (RO5185426) – the one that rejected me two summers ago because of a genetic mutational subtype that didn’t match the drug companies’ requirements – now has significantly expanded their patient access. as my oncologist said, “if you can breathe, you’re in.” the drug looks like it’ll be approved by the FDA any day now for use in treating melanoma, so that’s reassuring.

also, the MEK inhibitor is thought to have a strong effect for the first 6-8 months before the melanoma begins to crawl back into the crevices of one’s body. we’re at month 11. so, again, not a huge surprise that it’s returned.

i’m doing ok but am exhausted from the trip back from the doctor. i’ll try to be in contact with some of you shortly.

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Posted in clinical trials, melanoma, pain | 5 Comments »

break time! party time!

Friday, July 29th, 2011

after the multi-hour hospital debacle that was my wednesday evening, my doctors were nice enough to give me a break from the clinical trial. the drug can potentially exacerbate fluid retention, so that’s not going to help my hobbit’s foot. seriously, it looks like a hobbit’s foot, doesn’t it? so i get a week off, which is great! it’ll help my oily, unshowered body recover a bit – the combination of a hot and humid week and the complications of showering with a surgical dressing has not been kind to my skin. also, i’m stepping down off the steroids – as long as i don’t go manic (very unlikely) i’ll be done with them on sunday. thank god. the anxiety and reflux and general overstimulation is driving me nuts. or more nuts.

also: my knee hurts. just wanted to get that in there.

my birthday week wraps up tomorrow with the first annual east coast all-participatory talent show/BBQ/birthday party! it deserves to be in bold typeface. if you’re local, please come by. it’s gonna be outta sight! email me or call for details – i don’t think i should make the info public…

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Two years is nothing when you’re 30.

Wednesday, June 8th, 2011

well, i’m still anemic. and it’s m-f-ing hot today. which means i’m tired and weak and i’m feeling all of the 90+ degrees that are shimmering down on us. my anemia is bad enough that my drug is still on hold. but: it’s still working, and working well.

speaking of my drugs, check it out: my doctor is in the times! she’s quoted as saying, in regards to the two years that effective treatment can extend our lives: “Two years is nothing when you’re 30.” i think that’s about me! pretty sure anyways. click on the title for pics and mind-bottling graphic representations of the healing power of this new class of drugs.

Drugs Show Promise Slowing Advanced Melanoma

By 
CHICAGO — Two new drugs have been found to prolong the lives of people with advanced melanoma, representing what researchers say is notable progress against the deadly skin cancer after decades of futility.
The drugs represent success in two new approaches to combating cancer: one by attacking a specific genetic mutation that accelerates tumor growth; the other by unleashing the body’s immune system to fight the disease

“This is an unprecedented time of celebration for our patients,” Dr. Lynn M. Schuchter, a melanoma specialist at the University of Pennsylvania, told reporters Sunday in Chicago at the annual meeting of the American Society of Clinical Oncology, where the results were presented.

The drugs do not cure melanoma, except perhaps in rare cases. But experts said they might add two to several months to the expected lifespans of people with advanced melanoma. Right now people with metastatic melanoma — meaning it has spread to distant organs — typically live 6 to 10 months.

In one trial, 84 percent of patients taking the experimental drug vemurafenib (pronounced vem-yoo-RAF-en-ib) were still alive after six months, compared with 64 percent of those getting an older chemotherapy drug, dacarbazine. Using another statistical measure, the risk of dying was reduced 63 percent.

The effect was so marked that the trial was stopped early for ethical reasons, so that patients in the control group could be offered the new drug. Because of that, researchers do not yet know the median survival.

“You don’t need to wait for 50 percent of 675 patients to die to conclude that one drug is much better than the other,” said Dr. Antoni Ribas of the University of California, Los Angeles, who was an investigator in the trial and has been a consultant to the developer of the drug.

The other new drug, ipilimumab (pronounced ip-ee-LIM-yoo-mab), when combined with dacarbazine, extended median survival to 11.2 months compared with 9.1 months for those who received dacarbazine alone. After three years, 20.8 percent of those who got that new drug were alive, compared with 12.2 percent of those in the control group.

The results of both trials were published online by The New England Journal of Medicine in addition to being presented here.

To be sure, more than half of patients with metastatic melanoma would not be helped all that much by either drug. Experts say more needs to be done, especially since melanoma affects more young adults than many other types of cancer.

Even if the new drugs allow patients with metastatic melanoma to live two years, “Two years is nothing when you’re 30,” said Dr. Anna C. Pavlick, head of the melanoma program at New York University.

Still, doctors and patient groups welcomed the progress because until now treatment of melanoma that had spread beyond the skin to distant organs “was terrible even by routine cancer standards,” said Dr. Vernon K. Sondak, chairman of cutaneous oncology at the Moffitt Cancer Center in Tampa, Fla.

Also, the number of melanoma cases has been rising, unlike for many other types of cancer. Doctors say that is because of unprotected sun exposure years ago, the proliferation of tanning salons and perhaps more attention to detecting the disease.

There were about 68,000 new cases of melanoma and about 8,700 deaths last year in the United States, up from 48,000 cases and 7,700 deaths in 2000, according to the American Cancer Society. Particularly fast increases have occurred among people older than 65 and among women 15 to 39 years old.

Vemurafenib is the latest so-called targeted therapy, which inhibits the effects of genetic mutations that spur tumor growth and spread. In particular, the drug counters the effect of a mutation in a gene called B-RAF that was discovered in 2002 to be common in melanomas. (The drug’s name comes from V600E mutation in RAF.)

The drug, which is taken orally twice a day, would be used only by the roughly half of melanoma patients whose tumors have this mutation. The drug significantly shrinks tumors in about half of these patients — or about a quarter of all melanoma patients.

It was developed by Roche and Plexxikon, a biotechnology company in Berkeley, Calif., that was recently acquired by Daiichi Sankyo of Japan. The drug is expected to be approved by the Food and Drug Administration within a few months.

Ipilimumab, the other new drug, releases a brake on the body’s immune system, allowing it to more effectively attack the tumor. Developed by Bristol-Myers Squibb, it was approved in March and is sold under the name Yervoy.

A series of articles in The New York Times last year followed the development of vemurafenib, then known as PLX4032, and recounted how some patients close to death seemed to make miraculous recoveries.

The effect, however, typically lasts only about seven months before the cancer starts to grow again, though some patients benefit for more than two years.

S. Taylor Chance, a 67-year-old real estate agent in Rancho Cucamonga, Calif., has been taking vemurafenib in a clinical trial since March 2010. “If it weren’t for the trial I wouldn’t be here,” she said.

It has not been all good. Ms. Chance said the drug caused such extreme pain at one point that “I called in the children and said, ‘I’m done, I can’t do this any more.’ ” But she had her dose reduced and took other medications for the pain.

In the trial, sponsored by Roche and led by Dr. Paul B. Chapman of the Memorial Sloan-Kettering Cancer Center in New York, 38 percent of participants had to stop taking the drug or lower the dose because of side effects, including rash and joint pain. Many patients get minor skin cancers that can be removed by dermatologists.

The trial of ipilimumab, paid for by Bristol-Myers, involved 502 patients with late-stage melanoma.

Last year at this conference, researchers presented results of a trial showing a survival advantage for patients who had undergone a previous treatment. The new trial of this drug, by contrast, involved patients who were getting treated for the first time.

While the extension of median survival of two months, from about 9 months to about 11 months, was less than some experts expected, researchers said the real benefit was that a small number of patients, perhaps 10 to 20 percent, could live a long time.

Because it unleashes the immune system, ipilimumab can have serious side effects. In the latest trial, a big one was liver damage.

A course of treatment of ipilimumab costs $120,000. The price of vemurafenib has not been announced, but is expected to be at least tens of thousands of dollars per year.

Doctors are eager to try the two drugs together. Roche and Bristol-Myers said Thursday that they would conduct such tests.

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home sweet home

Monday, June 6th, 2011

ah, my lovely bed. no one around to draw blood at 5:30 am (and fail three times). no late night coughing of death coughs, no screams from down the hall. just my comfy pillows and the open arms of my wonderful wife.

thank you so much to everyone who came to visit, or who checked in on me via the exceedingly myriad ways of being in touch. i know i haven’t been posting as much – it’s just not as interesting when i’m doing well – but it’s so very nice to know that in my times of need that you all will rise to the occasion. hopefully there won’t be another visit to the hospital for a nice long time. it’s scary how many staff people at NYU i know by name at this point. i mean, they’re friendly and all – but they’re just not people i like to see very often.

so: back to life. i managed to make it through a shift behind the bar last night, and i’m diving in to my writing pursuits. we’ve started the process of hand-making all of our wedding invitations, which is a helluva lot of work but so worth it. wait until you see the final product!

for those of you who might catch the news about the great leaps forward in treating melanoma (here, for example), my treatment is in the family of drugs that blocks the protein uptake of the melanoma cell, but only for those patients with what’s known as a BRAF mutation – about 50% of the population, and thankfully, a group of which i am a part. it’s funny to say this, but it’s a great time to have melanoma. the treatments in the news right now didn’t exist when i was diagnosed three years ago, and i’m incredibly lucky that they’re available now.

Posted in clinical trials, gratitude, hospital visits, melanoma, skin cancer | 3 Comments »

half-life

Wednesday, May 11th, 2011

yesterday at the doctor, i asked how much longer i might be on my trial drug. the side effects aren’t life-altering, but they do exist – fatigue, joint pain, skin issues. the drug has helped my body make a miraculous recovery, and if necessary i would stay on it forever. but i’d rather not. my oncologist said that if i continued to have clean scans for a year, that i could potentially be finished with the treatment. that would be next february. amazing.

modern medicine has kept me alive, but at what cost? by all accounts, i probably shouldn’t be alive. yet here i am, and i’ve paid a steep and dramatic price for staying alive. the painful swelling that i’ve been dealing with this past month is just one of the many afflictions that continue to plague me. i’m starting to bruise from the inside with the pressure from the edema, and i’ve gone from a size 31 to a 34 just to make room for my swollen limbs. a fellow melanoma survivor is in the hospital this week, for the second time in a month – such is our lot. but is it worth it? of course it is. a half-life, a life of injury and pain and fear, a body left ravaged, maligned and immunosuppressed – it is still a life.

an old friend passed away recently after refusing treatment for a rare cancer. i respect her decision, and i understand how the terrible toll exacted by cancer treatment can make for difficult choices – but in the end, i don’t actually understand. yes, treatment is awful, and it can kill you just as quickly as the cancer itself. it can destroy you. it can tear your life to shreds. but a half-life is still a life. i would gladly vomit on the subway and lose all my hair and endure pain so severe it hurts to move, just to have another year with the people i love. and i would guess that sentiment has helped to keep me alive.

whew! after that high intensity kind of thing, i find it’s helpful to cleanse the palette a bit. so here’s an index of hospital slang for your enjoyment. be warned, not exactly for the faint of heart.

Posted in clinical trials, gratitude, hospital visits, pain, philosophizing | 2 Comments »

tic tac toe…

Tuesday, April 26th, 2011

three in a row! my scan was clean yet again, which is awesome. this week is the third anniversary of my diagnosis – who could have ever imagined i would make it this far? amazing.

a special shout out to my buddy ameet who celebrates his birthday today (along with damien, and chris, and hernan, and ethan!). ameet is an incredible friend and although kathryn has taken the brunt of my hard times, ameet has been there at my side whenever i’ve needed someone. he’s also a super talented photographer (evidence!). and man oh man does he wield a mean saucepan – i look forward with spine-tingling delight to every evening he comes over to cook. his friendship is nourishment beyond a simple sating of the appetite.

speaking of food, my scan also showed significantly swollen bowels, which points to the presence of c. diff, an intestinal infection that can take hold after heavy antibiotic use. the bacteria also decreases effective protein absorption, which would explain why i’ve been so crazy tired all the time. i’m on a course of gut cleansers and that will hopefully take care of it. i don’t want a fecal transplant… GROSSSSSSSS WHY DOES THAT EXIST AND WHY DO I KNOW ABOUT IT?!?!?

speaking of gross, my lymphedema has come roaring back – yesterday i weighed in at 170!!!!!! that’s all water weight, and it’s mostly in my left leg (which is going through enough with the torn ACL – i mean really). it’s unfortunate that this is all happening as the store heads into the final week of preparation before we open on saturday!!!!!!

and speaking of the store:

we’ve launched a campaign to raise some capital to help with the startup costs of the business. we’re trying to gather $10,000 in donations by may 15th. our wonderful friends and family have already brought us to $2,000 but that leaves $8,000 to go in just 20 days. i know you all are a remarkably generous bunch, so please consider giving if you can. you can donate through our indiegogo campaign site here. our grand opening is this saturday (AAAH!) – we open at 11 am and the garden party starts at 4 pm. awesome! now check out the video gaia and i made. jeez, who let me ham it up like that? sorry. :)

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Posted in advertising, clinical trials, events, gratitude, videos | 3 Comments »

ski weekend!

Friday, March 4th, 2011

wow, what a wondrous whirlwind week ! whew! a new part-time job, a story past deadline – and a ski trip in vermont coming up to boot! sorry about the lack of posting, but i think the scan results deserved top billing for a while. i’m still letting it all sink in. and it feels great. it’s funny to say so, but it’s a great time to have melanoma – the medical advances of the last year or two have dramatically expanded my options, and the options of thousands of survivors. i’ve said before that treating melanoma is like punching jello – it might seem like you’re making progress, but there’s still jello all over the table. i will forever have melanoma cells in my body, but if the treatments can hold it back, then it becomes a chronic illness and not a terminal one. my doctors didn’t say so at my initial diagnosis, but in another time they might have given me months to live – and next month marks three years since then. hooray for science!

SCIENCE!

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