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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 »

mixed weather, mixed feelings

Wednesday, November 7th, 2012

it was with great relief that a very tired kathryn and i watched obama’s late night victory speech. it was inspiring, to say the least. i don’t envy him for the job he has in front of him, and i don’t agree with everything he’s done. but obama’s still my man, for many reasons; most importantly his emphasis on overhauling america’s health care system, which is badly in need of a doctor itself. i met with a friend yesterday who is dealing with intense chronic pain but is without insurance and can’t afford the many thousands it would cost to get all the proper diagnostic tests. so instead he suffers. if i hadn’t been lucky enough to get a full-time job and benefits just weeks before my diagnosis, my debt (and the debt of my family and community) would be over three million dollars. the affordable care act – if it pans out as it should – would make those crushing costs a thing of the past. so yes, i am indeed celebrating today.

but the joy is tempered with a sobering dose of sad reality. as the snow begins to stick and weather reports warn of  impending wintry mess, i can’t forget the thousands upon thousands who are without homes, without power, without heat, their lives and livelihoods uprooted or washed away entirely by last week’s devastating storm. on sunday, kathryn and i walked down to red hook and spent part of the afternoon helping hand out donations of food and water. we’d hoped to lend a hand with the cleanup efforts, but with multiple feet of standing water in basements throughout the neighborhood, we were a far cry from the pumps and generators that were most desperately required. in the rockaways, in staten island, just down the street in the toxic shadow of the gowanus canal; there is much, much more work to be done. i only wish that i was better suited to the task.

instead, i volunteered until my aching back told me to stop lifting bags of canned goods and palettes of bottled water. i managed to catch a mild cold over the course of our day in red hook; i knew it was a risk given the less-than-sanitary conditions. and when i get a mild cold, it’s more than mild. i’m not significantly ill, but i’m achy and fatigued enough that it’s knocked me down for the week thus far. i feel so lucky to have my health, among many other amenities – hearing the horror stories coming out of the evacuation of NYU’s hospital, i’ve never been so glad to be unhospitalized. as of yesterday, i still couldn’t reach my oncologist’s office – phone lines throughout manhattan have yet to fully recover. can you imagine if i was in treatment right now? or if my cellulitis had recurred before the storm? i shudder to consider the frightening possibilities.

as the wintry mix continues to swirl around my well-heated room, i am most definitely counting my blessings, and keeping in my prayers all those who are in the midst of terrible challenges, whether the weather or the stormy situations that our own bodies can create.

Posted in gratitude, pain, philosophizing, weather | 1 Comment »

haunted

Monday, October 22nd, 2012

last night i lay in bed, sleepless at far too late an hour, thinking about how and what to share with you. the last couple weeks have been extraordinarily difficult, and i was trying to figure out the best word to describe how i’ve been feeling. haunted seems about right, and seasonally appropriate to boot.

today should be a day of joy and celebration, as kathryn and i are marking what we call our “second first” anniversary. since we were married initially at city hall, we now have two anniversaries, and if living with cancer has taught me anything, it’s to celebrate at every possible opportunity.  that weekend in swannanoa was so very special, and tonight we’re going to try and recreate the glorious dinner from our wedding reception a la asheville’s famous corner kitchen : pecan-crusted trout, ginger mashed sweet potatoes and southern-style green beans. i’m sure those of you who joined us for those magical days in the blue ridge will be wistful at the mention of the food. last night i gave kathryn what has become a traditional gift of a custom designed crossword, with clues from our lives together. for instance, general from a great broadway show and/or my favorite way to be? answer: buttnaked. (he’s in the book of mormon. the play, not the book. obviously.)

and while i awoke feeling upbeat about the day to come, that hasn’t happened in a while. instead, the norm these days is for me to rise with dread and anxiety tied up inside me like a gordian knot. i look at the stack of unpaid bills threatening me from the desk. i consider the empty bank account that holds no answers. i’m haunted by my mistakes, my failures. mostly, though, i think about these endless numbered days that i’ve wasted. i have a tendency, when things get overwhelming, to become utterly paralyzed, to a crippling pathological level. instead of chipping away, bit by bit, like i know i should, i turn my back on my responsibilities for another day, play video games, watch cartoons, do anything other than anything. i feel like a lost child. i literally spend hours upon hours doing nothing, wishing so dearly that i was doing something. my short, mid and long term to-do lists seem to epically undoable that it puts me into a tailspin of crushing depression.

and what haunts me is that i’ve brought it on myself. naturally, i’m conscious of cancer’s destructive power, and i still have a lot of recovering to do. i’m miraculously, wondrously free of disease, and that is a great and powerful gift – but i feel like the treatments and pain pills have melted my brain, irradiating whatever neurons promote focus, dedication, motivation, responsibility. and sure, this past week i’ve been sick, and struggling with a meandering migraine. but that happens all the time, and they’re easy excuses i can use to tell myself it’s ok to make no effort. there are definitely days where it’s necessary for me to shut down. after all the surgeries and poisons i’ve endured, my body has become a fragile thing. i don’t plan on returning to traditional full-time employment – i’d burn through a year of sick days in a few months – and i’ve set my life up in such a way that i’m able to have lots of down time. but that’s all it’s been recently: time that i’m down. i’ve tried a handful of more regular jobs and watched in helpless horror as i sabotaged my efforts again and again.

kathryn is working as hard as she ever has, and that’s saying a lot. she’s halfway through a stretch of twelve workdays in a row. that’s just cruel. i have a hard time reconciling my own lack of productivity, career-wise or other-, with the ways that she sacrifices herself to care for me, not to mention the continued support provided by you, my generous and caring community. it’s an incredible privilege to have the life that i do, to have nothing but free time – my life itself is a privilege, given my initially grim prognosis. and i’ll bet lots of you would give anything to not have a day job. i should be taking advantage, out wandering this unparalleled city, visiting museums, enjoying the fall, or at least writing songs, or making art, or sifting through years of disorganized pictures and music, but instead i pace my room, tortured from the outside by the multi-year construction project across the street and tortured from the inside by my own self-loathing. i wish i could say i’m trying my best; instead, i’m simply not trying at all. i have serious issues with being too hard on myself – it’s a major topic in my conversations with my counselor at cancercare, but if you’d just spent a week (/month/year) ignoring all your responsibilities and escaping into passive, mindless entertainment, you might be a bit critical too. sarah and i are talking again today, and i’m planning on seeing my psychiatrist to discuss upping my anti-depressants. at this point, i’d try just about anything to break this vicious, destructive, infuriating cycle.

i apologize for starting the week off in such a brutal manner. i know that diary entries like this aren’t exactly pleasant reading, but i’m hoping that being honest here will keep me on track moving forward. i don’t want to feel the way that i do; i don’t want to spend another listless, atrophied day like so many before. when i get into bed each night, as i toss and turn and grapple with demons into the wee hours, i promise myself that tomorrow will be different, that tomorrow is another day.

and, as the beatles, here in bizarre and somewhat offensive cartoon fashion, remind us:

tomorrow never knows.

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Posted in cancercare, chemotherapy, complaining, gifts, gratitude, language, links, migraines, music, pain, philosophizing, radiation, rock and/or roll, sadness, therapy, videos | 3 Comments »

so this is the new year…

Wednesday, September 19th, 2012

and i don’t feel any different. or at least that’s how this song goes.

for me, though, the hebraic leaves of 5773 have turned over at a time particularly ripe for self-examination, similar to that at the changing of the year. one of my most thoroughly accepted superstitions is that the first day of the new year establishes important precedents for the next three hundred and sixty-four to come. the people with whom you spend the day will be integral. the ways you decide to enjoy the holiday (e.g. fighting your hangover) have ramifications. and most relevant to my point, your physical, mental and spiritual state on january 1st are a reflection of times to come.

so here i am, on september 18th, faced with an excellent chance to take stock. and if i can do some solid soul searching today, i like to think that it will be the beginning of a year full of thoughtful, honest introspection.

so this is the new year…

and it’s time for a change.

last week i mentioned that i was struggling, and so many of you were generous and kind to check in and send your love. but i didn’t really explain everything, and recently i’ve found it cathartic to state aloud the depths of my despair. it may be overly self-indulgent (though personal blogs are, by their nature, a narcissistic haven). i apologize if it’s difficult and/or painful to read – i want to make clear that i’m feeling vastly better. i like to think that i’ve already learned a great deal from this experience and have hopefully developed some of the skills necessary to prevent a recurrence, or at least to limit its extent. i hope that my sharing provides a glimmer of hope for those who also find themselves lost in the darkness.

last week, i was overwhelmed with sadness, frustration, pain and self-loathing. it was one of the darkest times in as long as i can remember – and that’s saying a lot, given the challenges of the past four-plus years. it was a hard week. and i made it much, much harder. true, we lost our longtime family companion in maggie. i had a cold. i endured opiate withdrawal and the attendant tremors, pain and flu-like symptoms. i lost a chance at new part-time employment while trying to avoid the difficult truth of ever-decreasing bank statements, a steady uptick in interest-laden debt and my good-lord-i’m-so-tired-of-them medical expenses.

things were not easy. and in response, i let my fear and anxiety take over my life. while it’s only natural that i would have such feelings, the loss of control brought on complete paralysis.

i stopped working. i stopped writing, and reading, and painting, and making music. i didn’t leave the house for days. i didn’t pick up the phone or respond to e-correspondence. i barely ate.

and i didn’t reach out for help.

instead i tried to sleep the week away. i would wake early as kathryn prepared for work and construction revved up at the apartment complex across the street (do you think jackhammers and masonry work starting at 7 am help my anxiety? answer: they do not). but after a few hours of doing nothing and growing angrier and angrier with myself for doing so, i would put in earplugs and head beneath my pillow to hide from the world. i rarely slept, so instead i spent many hours tossing and turning in our darkened room, without music, without entertainment or distractions of any kind. the perfect weather throughout the week made me feel taunted by the world.

big surprise: hiding didn’t make me feel any better. my misguided attempt to try and ignore everything instead bound me further to my own misery. i felt helpless. i hesitate to say so, but when i examined my seemingly-insurmountable burdens, i found so little hope that i considered initiating the ultimate escape plan and taking my own life. i want to be very clear – i never thought of suicide as a viable option. never. i have so much love for the world, and i know how truly i am loved in return. though i can be tremendously selfish, i couldn’t ever disregard all those who care so deeply for me. still, i wished for relief and an easing of the weight bearing down on me, and since i couldn’t see through my opaque torment, it was nearly impossible for me to imagine finding peace without escaping the situation in its entirety. again: i am safe. i know my disclaimer may not prevent some of you from worrying about me, and i will accept your support and caring with open arms. i just want to make certain as i relay this painful story that you all understand that i will not give up.

after four or five agoraphobic days of refusing to deal with reality, i started the long climb out of my self-inflicted hole by heading to the headquarters of the venerable advertising firm ogilvy. they’re marketing a new melanoma drug and are meeting with patients to hear about past treatments and living with the disease. i spent two hours talking about it all: my whiplash from the cancer roller-coaster, the heartbreak of life-altering side effects, even the painful week that preceded our conversation. it was hugely helpful to remind myself of all that i’ve endured so far. if i’ve been able to manage all this way, then it’s going to take a lot more than poverty and depression to stop me.

kathryn spent the weekend back home in tennessee. i know how hard it was for her to see me in that state, to come home after long, stressful days at work to a broken man. being my partner can be awfully burdensome, and i don’t know how she moves through it with such grace and patience and grit. still, i’m glad she was away for a few days, since it gave me the chance to take a breath and reset. i performed some serious cleaning therapy – load after load of laundry, piles around the room that should have been sorted long ago, stacks upon stacks of medical paperwork. i wanted nothing more than for her to arrive home to a put-together room – and a put-together husband. throughout the week, she was kind and understanding and gentle, but i don’t want to add to the already-unwieldy weight she carries. she motivates me to be a better person – just one of the many reasons i love being with her.

saturday was also a blessedly well-timed cancer summit for young adults. i got to see folks from first descents and a handful of survivor friends – there’s nothing like a little camaraderie to lift one’s spirits. during a workshop on cancer and employment, i asked the panel about how to develop realistic expectations. i thought i was ready to return to more regular and more demanding work, and it was endlessly frustrating to find that it wasn’t the case. i’ve complained bitterly and often about the restrictions that cancer has placed (and continues to place) on my life, and this time it was magnified by the difficult week. the panel’s response had to do with cancer and the workplace, but it has resonated with me far beyond my struggles with work.

they told me to be kind to myself. to be patient. they pointed out the gains of being truly, legitimately honest with myself. they encouraged me to think deeply and thoroughly about myself and my situation, not just when times are hard but *all* the time.

our expectations of ourselves must constantly evolve, they said. by examining the recent, the midrange and the distant past, one can gain a more accurate sense of the tidal ebbs and flows of life.

so: kindness. patience. honesty. the journey of the self.

i know i won’t manage this kind of personal enlightenment overnight, if ever. though i’m a world away from where i was last week, i’m nervous that the potential for suffering another breakdown is still very real. so, dear readers, to those brave few who have stayed with me through this seemingly endless post, i’d be most grateful if you could be there to make sure i stay on the path.

one of my many recent anxiety attacks was brought on in part by the thought of my intentions to send tremendously past-due notes to thank you for all that you’ve done to support me and kathryn. you’ve all made such a dramatic difference to both of us, whether it’s through generous financial assistance, or a beautiful quilt, offers of work, a friendly note, a home-cooked meal, a well-timed hug – and i want to make sure you all know how deeply grateful we are.

i take great solace in knowing, as i wrap up this post past 2 am, that asking those who are able to help keep me honest and spiritually strong isn’t a lot compared to everything you’ve already given to us.

shana tova.

happy new year.

Posted in advertising, complaining, gratitude, loss, love, pain, philosophizing, sadness, therapy | 9 Comments »

another year.

Thursday, July 26th, 2012

after you turn 21, each birthday seems to be a reminder that you’re getting old. that you’re slightly less cool. that your best years are behind you. i’m not saying i’d like to be 21 again – god forbid – but it’s the last age that you qualify for some privilege until you turn 65. and i don’t know anyone who gets excited about automatically qualifying for medicare.

cancer has changed my perspective on birthdays. every year is cause for a significant celebration, simply because it is another year that i’ve stolen from death. that chess game in the seventh seal? i’ve been playing that game for four years. and death is playing with 16 queens. the past four years have put me at the brink so many times i’ve lost count. was it the cellulitis that brought on a fever of 106? was it the dual viral and bacterial infections alongside pneumonia? many months after that trauma, one of the oncology nurses who cared for me during that awful time admitted that she didn’t think i would make it through. understandable: i couldn’t speak for three days. or was it when we discovered tumors in my intestines? we were prepared for that to be the beginning of the end, to watch as the disease rumbled its way through my internal organs and into my brain. or was it when tingling sensations repeatedly rippled through my body, alongside numbness, dizzy spells and muscle weakness? i thought i had a brain tumor and was ready to head into brain surgery. i was ready to say goodbye.

like i said: i’ve lost count. but each time i’ve somehow found a way to pin death in the corner and announce a triumphant checkmate.

and now, today i turn 33. an auspicious, palindromatic year. my world feels like its opening up like a lotus flower, with petals representing nearly infinite paths of being – all of them exciting, engaging, and filled with wonder and creative energy. two doctors have ordered paintings (one a recreation of hand in hand) and i met with a new buyer last night. that makes four commissions in as many months since i began my art career. to answer your question: yes, many of my artist friends hate me. no, hate is too strong a word. but i know there are many of you out there who’ve created art for years, decades even, without making a dollar. i know how lucky i am, and i feel incredibly blessed to have this new avenue of expression garner such a positive reaction. how many people, as they turn 33, are starting a brand new hobby that has the potential to be an entirely new career choice and life path?

as much as i despise my cancer – and that is an awful lot – i’m grateful for the ways that the experience has made each day precious, each week a celebration of life, and each year a tremendous accomplishment. few people pat themselves on the back for simply surviving another year. i do so every single day.

thank you all for your kind birthday wishes. i wish you could all come and party with me on saturday! we’re hosting the 2nd annual east coast all-participatory talent show/BBQ/birthday celebration (or 2AECAPTSBBQBC). the lovely, incomparable annie bacon started the tradition out in san francisco many years ago, and i’ve founded an east coast version. we’re accepting submissions via email or video links, so if you’d like to participate, please send in your submission by saturday morning.

and speaking of talents, i’ve finally finished editing/cropping/color fixing/naming all of my pictures from the trip to montana. they’re available on facebook (gallery one and gallery two) and also on picasa for those of you who avoid FB. i’m very pleased with the way they came out, and i managed to cut them down from over 1200 pics to just 400.

one last item before i go out for a birthday lunch with my good friend karl – if you’d like to hear more about first descents, CNN published a story about the organization the day after i returned home. that same day, i received a link to a pilot episode of the show change agent – they filmed the episode during my first FD camp, and i was one of two campers featured in the show. i can’t recommend the episode heartily enough, and not only because i come across as kind of a badass. it reveals the nature of first descents better than any of my pictures, and the stories they share are powerful and moving. there’s a feature-length documentary about FD that’s garnering significant attention as it plays through the festival circuit, so the producers are waiting until it’s in wide release to broadcast the TV show. it’s embedded below and runs just under 30 minutes. i hope you’ll take the time to watch it!

Posted in amazing, art, gratitude, hospital visits, loss, philosophizing, travel, videos | 1 Comment »

wow.

Sunday, July 22nd, 2012

two years ago, when i joined first descents on a kayaking trip in colorado, i had a great time – but i didn’t feel the life-changing force that some participants did, and i returned home not feeling especially challenged by the level of rapids we encountered on the river.

this time, it was different.

i’m still sorting through the 1,000-plus pictures from the week (a number that will drop significantly, but still). the people – both campers and counselors – were generous, hilarious, and real. after just a week, i count many of the participants among my dearest and most-loved friends. meeting people who’ve shared so much of the terrible, soul-sucking experience of living with cancer provided an opportunity to stop feeling alone in my struggle (not that the support you’ve all given me has left me feeling alone – far from it – but there’s a common bond between survivors that’s impossible to recreate). making new friends can create space to remind ourselves of who we truly are – when we present ourselves to newly made acquaintances, we decide for ourselves how we want the world to see us, and it’s a great reality check to see how you’ve changed and who you are this time.

the river (the flathead) was a dramatic step up from colorado, and i spent an awful lot of time out of the kayak, swimming in the ice-cold glacial melt and trying (aka failing) to avoid the many underwater rocks. rocks that were hard. rocks that left bruises so deep they have yet to appear on my hips. and on my back. and on my butt. and on my shoulders. and on my hands. but i learned far more from the rapids i failed to navigate successfully than the ones i managed. it’s not like i swam more than other kayakers – in fact, over the course of the week, every single participant exited their kayak more than once. the last full day on the river saw us through a number of class III rapids (class VI being fatal) and i did manage to make it through most of them unscathed. i left the river feeling like i’d learned a great deal about how to work with – and not against- the flow of the river. i’ve always appreciated the ways that a kayak allows you to interact so intimately with water, but this past week, with the excellent guidance from our guides, i came to understand the ways of the river in a new light.

it was a beautiful week. it was a gloriously beautiful week. the river ran along the western edge of glacier national park, and we couldn’t have asked for a more gorgeous stretch of river. the weather was perfect – warm and sunny on the river, cool and calm in the evenings. the soft grass in the yard of our lodge made for a great diving surface during our endless hours of volleyball. i think i’m as sore from bumping and spiking as i am from my studies of the variety of underwater rock formations. the soreness and exhaustion is elating. this time i’ve inflicted the pain on myself, rather than it being a result of treatment or surgical intervention. i’ve had to limit so many of my choices over the past four years, and to feel in control of my life once again is a privilege i once felt impossible to achieve.

thanks again to everyone who contributed to my travel costs, and to those who made donations to first descents as part of team groinstrong. we didn’t reach our goal of $1000, but every little bit helps. i’m so incredibly grateful for your supporting this marvelous experience. be prepared for another round of fundraising for FD when my next adventure comes around in 2013!

while i was in montana, i received an email from one of the communications staffers at cancercare. last fall kathryn and i recorded interviews about our experience with the organization – you all know by now how essential they’ve been to me. since i’m mid-process with my pictures from the trip, i thought you might enjoy the video from the interview.

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Posted in amazing, cancercare, events, gratitude, pain, philosophizing, travel, videos, weather | 3 Comments »

celebrating freedom

Wednesday, July 4th, 2012

on a wednesday? such bad timing. at least it’s not a billion degrees here. kathryn is celebrating the 4th in zambia, where it just so happens george and laura bush will be stopping by. she’s going to try to get him a bracelet, though i have mixed feelings about him wearing it. maybe she can give him a bracelet and a solid kick in the nuts. it’s the least we can do.

as for me, i’m celebrating a different kind of freedom. i mean, it’s great that we escaped from the yoke of british rule. but that was an awfully long time ago, and now, more than ever, the freedoms of individuals in our country are threatened, as “enemy combatant” status strips any accused citizen of their right to habeas corpus, as drones hover over our cities to weed out dissent. we operate a gulag archipelago and torture indiscriminately. we bomb libya while syria burns. we threaten iran with over their nuclear program, but hold far and away the largest stockpile of nuclear weapons. we spend and spend and spend developing the military-industrial complex as we strip basic social services down their skeletal remains. cities as large as stockton are declaring bankruptcy. my beloved california can barely stay afloat (and that’s not counting the potential for a quake that would create beachfront property in arizona).

so, what then is freedom? it comes down to the individual, doesn’t it? are you free from financial worry? does your health allow you to live an unfettered life? are you happy? if not, why not? do you have the space to decide how to live your life, or are you trapped in cycles of unemployment, depression, sickness, working three jobs to stay afloat, running to stand still? are children free if their parents are not? the political theorist/philosopher hannah arendt said that tyranny and totalitarianism inevitably break down because of one crucial fact: babies. children are not born indoctrinated – we do our best once they’re on their way, but each new birth offers the potential to break whatever oppressive cycle exists. so born free isn’t just a great movie about lions and their attendants – it’s a larger philosophy that points to birth itself as freedom.

this has gotten a bit more heady than i’d meant, but it’s all to say that i consider myself incredibly lucky to have as much freedom as i do. now that i can breathe a bit, being at least temporarily out from under the burden of illness, it’s easier to recognize how good i have it. for the past few years, it’s been necessary to set up my life in a way that gives me time to see doctors, to be ill, to heal. i don’t think i’ll ever return to full time employment. there’s only one thing that makes that choice possible, and her name is kathryn. by supporting me in all the remarkable ways that she does. so i suppose freedom isn’t just about the individual – it’s about the community that breathes life into that spark of individual freedom and allows it to grow to a blazing fire of independence.

oh man. i just got an email from kathryn. CHECK IT OUT!!!!

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Posted in amazing, bracelets, gratitude, images, philosophizing, travel | 2 Comments »

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

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 »

numbers.

Monday, March 5th, 2012

still no word from the doctor. to the drug company, i am simply a number on a pathology slide that is on a to-do list somewhere. actually, my number is N-10. i’ve explained before how i do NOT enjoy being made a number – especially when i’m waiting on important results. do you think that tardy pathologist has any idea what it means when patients have to wait for results of this magnitude?

it could also complicate things, as i only have 28 days from signing consent to begin the trial – otherwise we have to start all over again. i’ve got 11 days left. my oncologist said this isn’t the first time they’ve delayed important testing – they’ve had to get people into the cancer center for blood draws, send them to a PET/CT scan, rush the results and then have them back the next morning to begin the trial.

that whole process is unfair to so many people involved: my doctor, her scheduling staff who are forced to get insurance approval for any of the procedures before moving forward, the folks in the lobby who must wait while the staff is forced to engage in last-minute administrative work, the lab technicians who have to then make time for emergency patients, and of course the patients themselves, who bite their nails and pray that their disease doesn’t evolve as they await potentially life-changing news. once i find out more about this vaccine and the company behind it, i’m going to make sure they know how challenging their process can be.

now to the final number: 5. it’s a tangent that should be unrelated. but’s it’s not.

on my way to the doctor, i emerged from the subway to a soft, plaintive plea:

please, anyone. i am so hungry. can anyone help me get something to eat?

we’ve heard it all before. but today, perhaps because i felt like a number, this broken old man’s desperation pierced the usual thick shell of ignorance that’s a necessary tool for emotional survival in any city where the support system has failed.

if someone could help get me something to eat, i would be so grateful.

i try to give to charity when i can; sadly i’ve been my own charity for too long. i’m not trying to present myself as some triumphant altruist – if you’d been there with me, you’d have been hard pressed to walk away unmoved.

so i reached into my wallet and pulled out a five dollar bill. so whomever would like to claim that five dollar bill as part of your donation to my expenses, just know that it has gone to a very good cause.

as i handed him the bill, his eyes softened with piteous appreciation. it was as if i had lain gold bullion in his hands.

oh! sir. i can’t tell you how hungry i am. that is so wonderful of you.

the look in his eyes was beautiful and sad. he was delighted, but it seemed to me that he was also crushed by the weight of his hunger, for food, for money, for salvation in the broadest, oldest sense of the word.

i know i’m not the first to ask these questions, nor will i be the last, nor i do my best to resolve them.

what sort of country do we live in, where i can stand at the foot of the empire state building and meet a man who can’t remember the last time he ate?

what has gone wrong that even with insurance, people who get sick through absolutely no fault of their own are left bankrupt? why are those patients expected to be the go-between to make sure the insurance companies and the hospitals get their billing straightened out? and have you ever looked at the details of medicare? with even the best private medicare insurance, i would still be expected to pay no less than 25% of my medical bills – if i hadn’t had insurance, i think the overall total would have passed three million dollars by now. my fundraising efforts have been delightfully successful, but i seriously doubt my ability to raise a million dollars.

and what of the people who consider themselves “pro-life” – but stop supporting the child as soon as it takes its first breath? how can avoiding tax hikes be preferable to closing schools, hospitals, shelters, meal programs? there’s always money for a new sports stadium, or a stealth bomber – but arts programs? care for the elderly? no, we can’t afford it.

the gap between the richest and the poorest is worse in our country than anywhere else on the planet. and when we commence with the bailing out of the very institutions that caused the greatest downturn in decades, those who protest their greed and malice are branded “crazy leftists” or “domestic terrorists” or, worst of all, SOCIALISTS. when did that become a bad word? and do the people who think that way actually understand what social democracy looks like? what it could be at its best?

and some marvel, agog, afraid, at the decline of american empire. and to me, it is no surprise at all. for we cannot care for the welfare of our own, our wise and weary elders, our impossibly brilliant children, the broken of mind or body, the disenfranchised. why did private insurance companies tell this friend of a friend to let her severely disabled baby die? i’m taking my social security now because i can, and i consider myself lucky, because i very much doubt it will be there in another 30 years. and though my fragile health makes my life complicated and difficult, i am still a privileged white male with an incredible community ready to support me when needed. and you know how grateful i am for that.

but doesn’t everyone deserve that sort of safety net? why doesn’t kathryn get to pursue her dreams as she would like? she’ll have to keep a full-time job or at least the benefits of one for the rest of our lives together, or i risk being dropped by the insurance companies like a hot potato full of cancer. i want her to be able to dance. i want arijit to stop worrying and be able to love his wife and pursue his studies. i want the couple who tried to steal kathryn’s wallet to have whatever it is they felt they needed to survive. was it diapers? medicine? food?

i don’t expect everyone to get what they want all the time; that will never happen. but when the extraordinarily rich complain about having to sell their fourth or fifth home because of “this terrible recession” and at the same time, millions complain about not having a home at all, there is something very, very wrong.

maybe it has to do with numbers.

Posted in complaining, gratitude, links, philosophizing | 3 Comments »

the greatest gratitude.

Saturday, March 3rd, 2012

it was a week ago that i woke up, stressed out over the stack of bills, our suspended flex account, the collection notices, my inability to provide for myself and my lovely, caring wife. and i decided to ask you all for help.

it’s part and parcel of the life of a cancer survivor, especially when distant metastases are not so distant, that it’s impossible to know what lies in store, day to day, week to week.

even so, i wasn’t ready for this past week. in so many ways.

first, the bad, the bodily breakdowns that i always assume are coming while hoping they never do. two back-to-back trips to the emergency room is two too many. the second trip in particular was especially painful – an overcrowded ER and an inattentive resident made for a long (relatively), uncomfortable (again, relatively) stay, and i left with no answers as to why i felt so awful. though kathy’s care (see yesterday) was tender and kind, it didn’t take away the exhausting experience of going through all the same tests from the night before; the CT scan, the chest x-rays. my resident ordered an ultrasound on my leg, even after i explained that my scary-looking, taut appendage was simply a bad day for my chronic edema. but she didn’t seem to listen. at least in the ER, they bring all the machines to you, so i didn’t have to bounce around from floor to floor. but it’s incredibly frustrating to spend 12 out of 36 hours being poked and prodded, all to be told i likely have the flu. seriously?

next: the beautiful. over the course of my first visit to the hospital, i had the immense pleasure of listening to the first cries of a newborn that couldn’t wait for the trip up to the delivery room. the pained screams of the mother turned to laughter as the baby’s wails echoed through the low-ceilinged, not-at-all-soundproofed halls of the ER. it was like hearing the bell from the polar express; it was sacred. i seemed to myself an unwelcome guest, as if the presence of the rest of us seeking care might disrupt this tender moment. the nurses, pulling off their blood-stained uniforms as they left the bedside, remarked, OH MY GOD DID YOU SEE ALL THAT BLOOD? AND WHEN THE PLACENTA HIT THE FLOOR? I WAS LIKE, WHOA!

no sense of reverence. still, i’m sure the new mother appreciated their care.

and now for the good.

first, after enduring a brain MRI yesterday, i received an email just a few hours later from my oncologist saying that my brain looks good, with no signs of cancer at all. whew! even when melanoma is under some semblance of control, as mine is at present, it can erupt and spread across the body with unstoppable quickness. so when i have potentially neurologically-based symptoms – tingling in the extremities, one-sided weakness, muscle stiffness/rigidity, numbness (all of which i exhibited this week) – it’s crucial that we get an immediate idea of the state of my body, and in particular my brain. after a week of scary side effects, it’s a great relief to know that everything is looking good.

and finally, on to your generosity.

i’ve thanked you all before for reading, for all the different ways that this remarkable community of readers and well-wishers supports me, and kathryn, and my family as well. for the prayers and non-prayers and meditations and candles lit and bells rung and flags flown. for the bracelets that sit on wrists and altars and stickshifts and desktops. for all the cities around the globe that cradle you, my dear readers.

but this time, i needed something a little more concrete. and my god, the outpouring of generosity makes me weep. due to the kindness of nearly 100 different donors, i’ve received well over THREE THOUSAND DOLLARS in donations over the last seven days. that is life-changing money. my bills are paid, as are those yet to come, and for a good while. i’ve given some of the donations to kathryn so i forget about them for a while, and so that they’ll be there when i need them. ruth and lorelee’s donation (NOT for bills, the note read) will take us out for a date next week – a luxury that’s been well beyond our means for some time.

when i accidentally poisoned my neighbor’s wonderful dog yesterday (i left out some chocolate-covered raisins), i was able to pay the ASPCA poison control the over-the-phone advice fee without concern. and igby is doing just fine. you see, as i’m sure you already understand, the financial burden of being a resident of cancertown is so much more than co-pays and co-insurance. it’s the day to day living that has to play second fiddle to the constant stream of medical bills. nearly every penny of my disposable income goes to doctors, even when i’m feeling well. kathryn and i are INCREDIBLY lucky to not just have medical insurance, but to have UNION (NSFW) insurance that has NO annual or lifetime cap on benefits and comes with some of the lowest co-pay rates (PDF) in the country. if that wasn’t the case, it’s likely that i would have asked you all for help a long time ago.

you don’t think about lifetime insurance caps when you’re healthy – and then you get sick, and you think shit, well, at least i have insurance, and then suddenly you find yourself in the same situation as POOPSTRONG, aka arijit, a student in arizona whose cost of treatment for his bowel cancer quickly outstripped his lifetime cap. he’s trying to raise enough to cover his astronomical medical bills – he has awesome t-shirts for sale, and if you’re still in the mood for donating to cancer survivors, i heartily encourage helping him out!

really what i’m trying to say, as i’ve said so many times before but can never say enough, is thank you. though my health has collapsed this week, my mind and spirit have stayed strong, in large part due to the great burden that you have all communally lifted off of my shoulders, and kathryn’s shoulders too. looking back on this post, i don’t think it truly conveys how grateful i am, and how that same gratitude spreads to kathryn, and to my family. for, again, as i’ve written before, the burden of a cancer patient is so much more than the health of a single individual. terminal illness – in particular as opposed to sudden, tragic death – is an opportunity for us to cherish the sacredness of the short, so very short, time that we have together. people die every day, and the vast majority of them don’t have the chance to say goodbye. the gift, the benefit, the silver lining to this dark and terrible cloud, is the presence of mind to understand the fragility of life in ways i never could have imagined. i’ve gained, believe it or not, some much-needed humility. for nothing humbles like staring death in the face.

and i plan on winning this staring contest.

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Posted in amazing, bracelets, complaining, gifts, gratitude, hospital visits, links, love, pain, philosophizing, videos | 2 Comments »

drinking the ink.

Wednesday, February 8th, 2012

yesterday i finished craig thompson’s brilliant, moving graphic novel habibi (you may remember that’s arabic for friend). i can’t recommend thompson’s books enough. along with his also-500-plus-pages wisconsin-based love story blankets, he may be this decade’s greatest graphic storyteller. both books are draped with awards, awards that i dream of holding some day. if i could ever get the engine going on my own memoir.

so: habibi. friend. lover. in the novel, the main character, dodola, becomes deathly ill. a healer visits. he writes a series of healing phrases on parchment, then soaks the paper. the inky black water runs off into a bowl. dodola drinks the mixture. the word becomes flesh.

my regular readers know that when i break from my daily posting that something is usually quite wrong. and so it has been. but today i am drinking the ink. healing through words.

i returned from a lovely visit to florida to a thousand dollars in hospital bills and a serious viral infection. i lay abed, day after day after day, in and out of sleep, watching werner herzog movies (not a great idea) and wishing i was somewhere, someone else. i had a complete nervous breakdown. the act of simply getting out of bed was gargantuan; i didn’t shower for six days. i didn’t leave my house for nearly a week. and of course, i couldn’t even imagine writing. how do i tell my friends and family how broken i was feeling?

breakdown: go ahead and give it to me.

but slowly, minute by minute, hour by hour, as the fevers, chills and fatigue have faded, i’ve returned to some semblance of life. i apologize for the long delay – really, though, i find it remarkable, given these last four years, that i haven’t broken down more regularly. my counselor at cancercare gave me some wonderful advice: treat yourself like the preschoolers you once nurtured. and so i have patted myself on the head, said to myself, oh, what a shame that you’re feeling sick. here, have some candy. lemonheads, naturally.

i’ve received some lovely notes from a handful of you. somehow you knew. the notes are from people who i know have experienced dark and difficult times. the darkness can seem interminable, an endless sea of despair, longing, anger, pain. happiness seems like a distant dream, and our day-to-day tasks fall by the wayside. i’ve set up my life in such a way that when i’m sick, i can drop everything and heal. but that has its risks; what is my sickness and what is my anxiety about being sick? sometimes it’s hard to see the difference.

so: thank you for your kindness, your love, your support. i haven’t posted since january 24th, and to be honest, i would have expected people to stop reading. but thanks to the magic of user tracking, i can see the hundreds of people all over the world who return regularly to check on me. it makes a difference, it really does, even if you’re simply a casual reader. you don’t have to post a comment or say hi for me to know you’re there.

so: thank you.

thank you to the twin cities.
to gig harbor and gilroy.
to new york and newnan. to newton and new paltz and nashville.
to portland, paris, prior lake and petoskey.
to the bay area, boston, and berlin.
to baden-württemberg and bradenton.
to marseille, miercurea-ciuc, moscow, mableton and mumbai.
to chico, charlotte, cayucos, chicago. to choctaw and cluj-napoca.
to denver, d.c. and dallas.
to arcata, atlanta, audubon, and asheville.
to san diego and seattle and stevenson ranch.
to somerset, san jose and sunnyvale.
to houston, hugo and hopkins.
to oklahoma city, oradea, omak.
thank you to richmond, to rome and raleigh.
thank you to taos. london. kampala.

in the darkness, i know you’re out there.

you make a map of love.

Posted in gratitude, images, love, pain, philosophizing, therapy | 13 Comments »

scantron 50/50

Tuesday, January 17th, 2012

i wonder how much all these radioactive scans will lead to long term issues. it’s not scary for me like it once was, but i’ll never forget that first scan when the technician opened the box with the universal radioactivity warning sign, pulled out the silver hand grenade inside and attached it to my arm. whoa dogs.

tomorrow i head back for another scan. usually the wait time for results is around 48 hours, but because of scheduling conflicts, i won’t get my results until a week from today. a long time to wait, especially when the results of the scan could potentially resolve many of the complicated issues we’re trying to manage around my pain medication and the continuation of the zelboraf.

the situation seems surreal, doesn’t it? i would say i can’t believe it myself, but after everything i’ve already experienced it’s just one more insane hurdle that i shouldn’t have to jump. i wish there was some higher-up that i could appeal to, but we’ve got a complex set of problems right now, and there’s not a lot that any of us can do. i still haven’t heard back from the pain clinic around mediating some sort of continued relationship with my doctor there, but i’d really prefer to avoid returning. i wish i had proof of some of the blatantly illegal violations of privacy rights i’ve witnessed. and although my psychiatrist scolded me for not properly thinking through the ramifications of exacerbating conflict with a medical professional who’s crucial to my care, i still very much feel like the victim in this situation – and online reviews of his care mention some of the same things i experienced. i wish i’d listened to these people, but i thought as an experienced patient and forceful self-advocate that i could manage:

Dr. Zou was extremely cold…He also intimated I was a drug seeker, which was extremely hurtful as my grandfather was an alcoholic and I’ve been extremely concerned about being an addict (and have brought that up to each doctor). I have no idea why Dr. Zou is employed at a pain management center or how he could benefit patients, but he was cold, brusque, and generally nasty towards me. I highly discourage any patient going to him…

His diagnosis was inaccurate. His treatment plan was unhelpful. I left his office with absolutely no help and even more frustration then when I went in….He made inappropriate comments that made this patient feel worse.

yeah, those all sound about right. i’m still angry with the way i was treated by him and by the office is general – though his internists were all excellent, intelligent and caring, and when our argument went down, the internist present apologized and said he wished there was something he could do.

anyways, i’m feeling much better – i’m a couple weeks free of the zelboraf now, and a lot of the side effects are fading. i feel like i can live my life again, in ways i wasn’t able to for a long while. of course i always hope that my scans come up clean, but there’s a lot riding on this one. like i said, it’ll be a week before i get the results, and probably even longer before i hear about the insurance company’s final decision on the camera pill, but i’m sure i can find some way to keep you all engaged until then.

for instance, i could tell you all to find some way to watch 50/50, a powerful movie about a young adult diagnosed with a rare, complicated cancer. it’s painful, and filthy, and hilarious; sort of like groinstrong. last night, i managed to get through most of the movie ok until the main character totally breaks down about how truly awful and unfair it all is – from that point on i was choking down sobs. because, yeah, it’s truly awful and unfair. in the movie his new-ish girlfriend promises to be at his side (sound familiar?) and it made me appreciate all the incredible amazing things that kathryn has done for me, and all the sacrifices she’s made to help me manage this protracted battle raging inside me.

though in the movie the girlfriend gets him a dog.

i’m still waiting! where’s my puppy?

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Posted in advertising, art, complaining, gratitude, hospital visits, links, love, pain, philosophizing, videos | 5 Comments »

to whom etc. (part three)

Tuesday, January 10th, 2012

friends: apologies for the delay in getting you all updated. hmm, you know what? i’m not actually that sorry. i didn’t finish the post because my the pain in my hands has prevented me from extended bouts of typing. imagine that about half of the knuckles on your hands are mildly jammed. that doesn’t feel very good in your imagination, does it? ouch, says your imagination. ouch, say my hands. they’re feeling a bit better, though i’m not sure i’ll make it entirely through this post in one sitting. maybe i should i cut back on my verbosity? not a chance! that means the pain has won. and we can’t have that. although that particular outcome is far too common these days.

i’ve spent the last week complaining vividly, relentlessly, here and elsewhere. the aches and pains. the fatigue. hair loss. the limitations that my health forces me to bear (which, for each of us, are no less real and stifling given the multitudes, billions even, with burdens far greater than our own). but let’s be honest: that’s nothing new. why do you think i started groinstrong in the first place? sure, it’s provided me with an effective way to keep people updated while avoiding a stream of emails and text messages and a phone tree. but i’ve been just as grateful for the ways it gives me a cathartic release. it’s a public forum for my complaining, and luckily, you, the reader, are allowed to skip to the end or disregard entirely at your leisure. and we continue avoiding the real-life helplessness, or awkwardness, or frustration, or outright anger, that can come when one is face-to-face with another’s pain and misery. that sounds terrible, but the truth is that sometimes, a bit of remove from another’s pain and fear and unfiltered emotion is a safe distance and a good choice.

anyways. what was that about limiting my verbosity? ha! i’m just getting started.

so to brass tacks. on top of all my complaints, 2012 thus far has brought a seemingly relentless deluge of days filled with frustration and inanity.

to wit:

my rejected endoscopy.

my next diagnostic procedure is supposed to be a capsule endoscopy, a.k.a. the camera pill. that magical little machine buzzes through my digestive system with a tiny camera and strobe light, snapping a few thousand pictures on the way down. it’s particularly important for me, given that my tumors live in what’s known as the endoscopy gap – the upper (throat) endoscopic cameras can’t get down that far, nor can the cameras of a colonoscopy make it up. so yeah, it’s pretty important for me. i’ve already done it twice. this time my insurance company decided to deny me coverage, citing a lack of prior evidence and the cost of a potentially unnecessary procedure. um, what? sure, the pill ain’t cheap. but neither is anything else in medicine, including our premiums. luckily, i don’t have to be involved in this particular conversation to assure coverage of the procedure – i’ve been there before, and the most common outcome of said discussion is finding myself on a moebius strip between my insurance provider and the hospital, relaying procedure codes and decisions between two parties that act like feuding friends. “oh yeah?!? well, you tell NYU that we won’t cover it. and that they are ugly.” “united said what?!?  those boys have cooties.” they have cooties: for all intents and purposes, sadly not far off the mark.

i’ve been trying to get the endoscopy scheduled since before christmas. it still hasn’t been approved, even after having the necessary consultation with my gastrointestinal specialist, who spent the entirety of the short visit, cursing as he complained about the absurdity and unnecessity of either of us being there. as of this afternoon when i spoke to his staff, they said my insurance was continuing to deny coverage, but that the doctor had called on my behalf on top of simply filing the appropriate paperwork. hopefully the process will move forward soon.

and then there are my missing meds.

upon returning from my christmas visit to nashville, i discovered a notice that my insurance company, “to ease the delivery and reorder process,” had requested that i find a new “specialist” pharmacy through which i would then receive my life-saving cancer medication. i’d already gone through the reorder process (which seemed awfully easy) and had a refill arriving two days later. i called the pharmacy that had initially sent my zelboraf. no, they weren’t considered a “specialist” pharmacy, though they obviously were able to effectively provide me with the drug. so my order, to be filled 48 hours later, was not approved by my insurance. i call the new pharmacy and go through the always too-long registration process – “no, I-S-A-A-C-S. with a hyphen before it. two As. C. S. I-S-A-A-C-S. sure. India Sierra Alpha Alpha Charlie Sierra. Apple Apple Cairo Sam. OH MY GOD I AM GOING TO HURT YOU THROUGH THIS PHONE!!! still, everything is all set up, and just in time.

given the astronomical cost of my medication ($10000 per month, let’s remember!), i only receive 30 days at a time  (in case i die, so they don’t have to pay for whatever i didn’t use – seriously!). the 30 day limit holds true for many drugs, but it’s treacherous in this situation, since the order has to come on time or else i run out of medication. now we’re closing in on that point, and i’m starting a relationship with a new pharmacy. after quite a bit of back and forth, the delivery is set up just in time, with an express package and all that. it’s monday. they say the package should arrive tuesday, though it also might arrive wednesday morning, which is when i will take my last on-hand dose. tuesday i set up my housemates and neighbors to be on the lookout for the package, just in case i miss its arrival. all day tuesday: nothing. wednesday morning i call to check in.

“oh yes, thank you for calling. your order was cancelled yesterday.”

“wow. did you think to notify me?”

“it seems that was our mistake.”

OH MY GOD I AM GOING TO HURT YOU THROUGH THIS PHONE!!!

this is not allegra. it is not nexium. it’s not an antibiotic. this is my life-saving cancer medication, and you’ve cancelled my order, without telling me, and you’re not sure when i’ll receive the prescription. how remarkably stupid and baffling.

and the reason for canceling the order? they were going to send me my usual supply, but after my recent dose reduction, a full bottle only provides me with enough pills for 20 days. they’re not allowed to send half a bottle, nor are they allowed to send an extra 10 days with a 40 day supply in two full bottles (because sending more than a 30 day supply would be to imagine the impossible – that i will survive another week and a half). so instead of making the necessary calls and thoughtful administrative decisions, they decided to just cancel the order. i wonder, i so wonder, what would have happened if i hadn’t called? would they ever have called me? would i have simply slipped through the cracks, a cancelled order, stamped and filed and promptly misplaced?

of course, all of these conversations with the new, “more convenient” pharmacy happened to occur while two of my closest friends were visiting from across the country, and we had a single hour for lunch.

and THAT (among much else) is what’s so incredibly painful and infuriating about getting caught up in bureaucratic nonsense. instead of having what might have been a opportunity for a relaxing, fun, restorative conversation with my old friends, i end up frothing at the mouth and apologizing for yelling at an operator who has absolutely no power over the situation.

believe it or not, the worst procedural abandonment is still to come. but it’s late and i have to stop writing.

i just want to live my life. simply doing so is challenging enough without the addition of endless hours on the phone, or falling through loopholes, or becoming a number.

i will not become a number.

my life is my own.

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(Un)happy feet

Wednesday, December 7th, 2011

It’s a dreary, wet day here in the city, the sort of day that brings with it a communal mild depression, or in some cases a bit more than mild; a shared gloom that shortens fuses and raises tempers with its inescapable damp. True, it’s December,and it could easily be terribly cold and uncomfortable. Still, it’s a day that helps me recognize my incredible luck at being able to work from home, and increases my already near-constant awareness of the sacrifices made by my incomparably lovely partner, sacrifices on her part that allow me to rest when needed and work when I’m able. I marvel at Kathryn’s dedication to me, the burden she must bear in caring for me – the long, uncomfortable commute to a challenging job to provide us with benefits and stable income; the emotional weight of my tenuous existence that she has to carry like a porter, my Sherpa toiling alongside me up the Everest of a life defined by my demanding and harrowing illness  – and through it all, as I’m sure so many of you have seen time and again, somehow she maintains a wondrous grace and groundedness, a presence that is a balm for all that ails me, and a driving force for helping me break out of my cocoon of pain and exhaustion and nausea and frustrations and did I mention pain? and showing me all the joy and beauty and miracles that abound in our lives, and in all lives. So: thanks, my darling wife. I love you more than I can say, and you know I say it a lot.

This week, managing my health has been nearly a full time job, one of those weeks when Kathryn’s support is all the more meaningful. Monday I was in appointments from 10 am to 6 pm, with three blood draws and only a short break for lunch; Tuesday I was on the phone with follow-up calls from 9 am to 2 pm – including setting up my upper endoscopy for this coming Tuesday; today is a light one, with only a single visit to a podiatrist. Of course, the doctor is far from home, so I ventured out into the misty unpleasantness I had hoped to avoid and get to the doctor via an absurdly convoluted trip involving the F train, the A train, the 4 train, the 6 train and then finally the M34 bus (there’s a way to get there with less transfers, but it involves far more walking, and the pain from walking is the whole reason for the appointment).

I headed to the podiatrist with high hopes, as the calluses on my feet have become exceeding painful. They first developed from dancing at my wedding, but the Zelboraf is known to significantly lengthen or halt the healing process altogether, and six weeks later they remain unchanged, growing more painful by the day – yesterday I had to get in touch with my supervisors at the venue where I bartend and ask for a temporary medical leave (which of course was granted, but I hate that I had to ask). Sadly, the foot doctor had few answers – I had imagined some sort of magical nitrogen laser that would make them disappear forever, but she could only recommend a urea gel and moisturizers, along with a custom in-sole that would run me $600 and was not covered by my insurance. And of course my insurance doesn’t even cover the gel she prescribed. Booo.

On top of a frustrating week with far too much pain, I’ve had to watch my hair loss accelerate dramatically. My hair, oh my beautiful hair. It was perhaps 10 days ago that Kathryn asked me if I’d plucked my eyebrows – the moment was sort of like when Wile E. Coyote finally notices that he’s been walking through the air over a cliff, and his realization initiates his instant plummeting. Once we discovered my hair loss, my hair all decided the time had come to drop like so many leaves in October. My eyebrows, my beard (my beloved beard!), my armpits – even my eyelashes (my beloved eyelashes!) have started to shed. I still have a good head of hair, but it continues to thin quickly, and each shower moves the process along faster. Soon the carpet will indeed match the drapes, in that they will not exist. Since the loss is treatment-based and not physiological, preventative options like propecia aren’t at all effective.
If I wasn’t still writing on my phone, here’s where I would embed a video of a song from Hair. Sing it in your head!

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alien invasion

Tuesday, September 20th, 2011

it’s remarkable how much of our bodies we take for granted – not just our general health and abilities, but even the shape and size of our various parts.

those of you who might know where this is going are thinking, oh dear.

but it has come to a point where i can no longer expect my long-standing body shapes to remain stable. i’ve mentioned many times before that both sides of my groin are without many of the sentinel nodes usually found there. these crucial parts of the lymphatic system appear at many of the places where our appendages meet – the neck, the knee, the shoulder etc – and when they are damaged, it is possible that lymphedema will occur. for instance, after breast cancer survivors lose their axillary (armpit) nodes, it’s common to see compression sleeves, an attempt to try and prevent edema from developing in said arm.

let me be honest; i am hesitant to arrive at my point. i am not at all sure that it is prudent to discuss my present difficulties so graphically, even though i have done so in the past. you already know that i’m still in the hospital – it’s been 48 hours and i know even less than when i arrived – though i have managed to catch two rounds of jeopardy, so my knowledge of “words with one vowel” is expanded significantly (a central african nation? chad, of course.). still, i am not especially happy to be here if we’re not making progress that’s more than trivial. (ha!)

the over-all inflammation and redness around my hips and groin is almost completely gone, and after two full days of intravenous antibiotics, the only problem area continues to be the origin of the infection: my groin; or, more specifically, what lies between my left and right groins.

that’s right; i’m talking about my naughty bits.

though you might not recognize them as human at the moment – thus the post title of “alien invasion.”

have you have seen the tim burton movie mars attacks? if your answer was no, that’s a shame. it’s a wonderful b movie with a remarkable cast, not to mention one of danny elfman’s best scores. the movie has a unique and memorable look – but it’s the aliens that stand out, with their giant, exposed brains.

when your body parts are mangled, it can ease the pain to be able to make light of it. ever since i’ve had to deal with the lymphedema, kathryn and i have come up with ways to find humor in the experience. remember the elephant seal? it was the name for my poor, swollen, lopsided man parts. but even worse, even more advanced than the elephant seal is the mars attacks – a state of existence so named for the remarkable similarity of my man parts to the enormous split-lobed brains of tim burton’s aliens. the central vein running through the foreskin becomes firm, and on the subsequently divided sides, the tissues expand independently. like an invasion.

an alien invasion!


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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 »

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 »

under the sea

Friday, March 18th, 2011

some of you might already know that the little mermaid is just about my favorite musical ever. what can i say? i’m a sucker for anorexic disney princesses and the lyrics of the menken/ashman songwriting team.

so last night the bell house hosted a showing of the little mermaid, with a character imitation contest to start up the evening – winner: scuttle (“MERMAID OFF THE PORT BOW!”). seriously, it was incredible watching a sold out (!) house singing along to every word, booing ursula the sea witch, holding up lighters and cell phones during kiss de girl, laughing and clapping and generally reverting to a room full of nine-year-olds. and i was right there with them!

i can’t wait for aladdin and beauty and the beast!

in other news, it looks like i’m going to have to wait until july (!) to have my knee surgery. the restrictions on flying complicate the schedule, and i’m going to be helping a friend open a new store in may (more on that soon!). so it’s going to be a long wait. fortunately once the ACL tears, that’s all there is to it. it’s broken, like a rubber band. the pain i’m in now is more related to the MCL sprain and local contusions. so once that heals, i’ll be fine until july, other than living with a balky knee. and waiting will give me the chance to be on crutches in the dead heat of mid-summer. hooray for that! i’m SO not looking forward to returning to negotiating this disability-unfriendly city on crutches.

i’ve got a busy schedule today but wanted to add two things.

one, it’s going to be 70 degrees today and the impending spring makes me want to cry tears of joy. i woke up to birdsong this morning for the first time and it couldn’t have been any more wonderful.

also, st. patrick’s day marked five years since i moved to new york! they say it takes five years to become “local,” so i guess i’m finally a real new yorker. i have such vivid memories of driving over the george washington bridge with my dad, the empire state building lit green for the holiday, john coltrane’s a love supreme on the stereo, looking at a city full of promise and heartbreak and pain and wonder. if i’d known what the last few years had in store, i might have preferred to stay at home in minnesota and let my folks tend to me. but then i never would have met my beautiful wife, and lived in this beautiful house.

and i ask myself, well, how did i get here?

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okapi vs. elephant seal

Friday, January 7th, 2011

the battle is on! longtime groinstrong readers may remember that this post has historically drawn more traffic to groinstrong than any other. the post contains a picture of an okapi, a central african forest giraffe with remarkable zebraic markings. for some time, the picture was one of the top hits on google image search, so people looking for information about the okapi would have found themselves reading about my radiation treatment and my concern that i would end up looking like an okapi.

BUT!

the okapi has recently fallen out of favor with internet searchers, and a new animal has risen to take its place:

the elephant seal!

this post discussed my horrifying bout of genital lymphedema in 2008, and i mentioned that my swollen man-parts were looking remarkably similar to the bulbous nose of the elephant seal. gross. i’m sure people who click on the third image search result for elephant seals are not especially excited to hear about the state of my genitals .

and now the elephant seal has recently overtaken the okapi as the most commonly searched access term for traffic to groinstrong – 641 views in the last two weeks alone! okapi still holds a solid lead in all time searches, but it’s an interesting pattern nonetheless. what does it mean?? am i wrong about dolphins being my new totem animal? perhaps it’s the elephant seal instead!

 

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