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seventh new york-iversary

Wednesday, March 20th, 2013

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

but -

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

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

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

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

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

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

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

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

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

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

i’m glad i chose new york.

hand in hand III

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

moving forward, withdrawing back

Monday, February 18th, 2013

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

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

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

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

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

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

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

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

the kids are alright

Friday, January 11th, 2013

i haven’t posted as much recently, i know. it’s not just that this public place to discuss my disease seems less relevant now that my disease is under control – and will hopefully remain so for a long, long time. a few months ago, i wasn’t writing because i was in an awfully dark place, and it was difficult to share that. this wasn’t the only venue where that held true; i wouldn’t return phone calls or emails and i felt more or less dead to the world. it sucked. it truly and completely sucked, and i didn’t feel like i would ever be in a better place.

but now i have a much better reason for not posting regularly. my schedule is now predominantly spent caring for young children, and i couldn’t be happier. when i moved back to the bay after college, my godmother generously offered me a position as a full-time preschool teacher. i used to joke that my degree in political science was surprisingly relevant – conflict resolution, power dynamics and negotiation help greatly in successfully navigating the peaks and valleys of childcare. i helped to oversee the potty training of ten children (a fact which i still include on my professional resumé) and my urine-stained, poopy-smelling years with the kids were some of the happiest of my life – though the time was marred by my significant injuries after drunkenly stumbling off of a second story balcony. one day i threw my damaged back out while positioning mats for naptime, and the rest of the afternoon i was cared for by an army of preschool-aged nurses who brought me water and puzzles and books to read.

as i attempt a return to normalcy, i face the challenge of working with a body ravaged by surgery and treatment, one that will forever be immuno-compromised. no matter how diligently i care for myself, i’m going to get sick. i’m going to have days where fatigue and weakness limit my abilities and choices. i could be hospitalized at any time, and i still have regular appointments even as my obligations to see my oncologist become less frequent. a full-time job would be difficult, if not impossible, and i’ve spent very little of my professional life in that sort of setting.

just before christmas, i reached out to a handful of families letting them know i was available. and now i’m scheduled weekly with three families and a fourth in negotiation, with children aged two to eight. another joke i used while teaching preschool was that it gave me a chance to spend time with my emotional peers – while there are lots of ways i’m an old man (i play bridge, i enjoy scotch, i’m on social security, i own two canes), i like to think i’m still a child at heart. though i don’t have professional training or a degree in early childhood education, i’ve always been comfortable with kids. i was raised by ministers and from an early age was surrounded by children of all ages, and at age nine was gifted a new sibling (happy accident number three!).

given the intensity of the last few years – this coming april it’ll be five years since my diagnosis (what?!?) – it’s such a gift to be able to spend time with kids again. their sense of wonder with the world, the joy of discovery, the simplicity of their world; their marvelous minds are a restorative balm for my weary soul.

so if i haven’t posted in a while and you’re wondering what i’m doing: i’m probably playing hide-and-seek.

Posted in gifts, gratitude, music, pain, rock and/or roll, videos | 2 Comments »

fixing a hole

Monday, December 3rd, 2012

last week, upon receiving the wonderful news of my third clean scan in a row, i should have celebrated. and we did, a little, that night, with a trip to our favorite neighborhood gastropub (the one where kathryn was nearly robbed), where we toasted with tiny, sample-sized glasses of beer. my tolerance for alcohol has evaporated, and with all that’s happened (in particular our discovery that i had hepatitis C), i now limit myself to a few sips of booze at appropriate celebratory moments such as this. as i curtailed my drinking since my diagnosis, the definition of “celebration” has shifted from “it’s friday” to far more momentous occasions. i’ve dealt with a tremendous amount of loss in managing (dare we say, defeating?) my cancer, but the loss of alcohol is one i no longer mourn. given my years behind the bar, my past propensity for heavy drinking and the current fragility of my liver, it’s for the best.

still, the losses add up, and shift, and mystify. i’m plagued by post-treatment migraines – a particularly vicious one laid me out for much of last week. i’m constantly fatigued and have tremendous trouble staying focused, much less planning and multitasking. my career came to a screeching halt, though i’ve made some progress in fits and starts (mostly fits), and subsequently have had to depend largely on the generosity of so many of you – in particular my caring and patient partner.

and now, i’m confronting a new kind of loss: i’ve lost my cancer.

obviously this is a good thing. a very good thing. a miraculously good thing.

but it’s left a hole.

for the past four-plus years, my entire existence was dedicated to fighting cancer: dealing with treatment and its after-effects, organizing my insurance claims and never-ending bills, managing an extensive team of medical specialists and an extensive list of medications, etc. etc. etc.

suddenly, much of that is gone.

so who am i?

i’m picking up the shards of a life mangled by disease, and i’m having a tough time figuring out how all those jigsawed puzzle pieces fit together. there’s no picture on the top of this box to use as a guide, no owner’s manual to troubleshoot this engine light.

and instead of charging forward into the unknown, i’ve spent much of the last year cowering in fear. i’ve written plenty about my paralysis and my severe depression; i’ll spare you the details this time, save to say that the struggle continues. i’m incredibly hard on myself, and when i examine my past, i overlook any successes and focus only my failures. it’s incredibly unhealthy. and it’s an incredibly difficult cycle to break.

i love christmas. i own a santa costume. but this year, i find myself deep in debt with little income beyond the meager installments from social security and a few generous readers who send me regular gifts. being broke at christmas is painful. and the worst part is that i feel so strongly that i’ve brought it on myself. i haven’t worked regularly since christmas two years ago, and my many attempts at gainful employment have ended in disappointment. i’m finding it awfully difficult to see past all that and move forward.

i’m not saying all this because i want your charity; though i’m incredibly grateful for those of who you continue to support me, it’s far past time that i returned to earning my keep. this is an attempt to break out of the wallowing and silence and pain. i’ve spent the morning seeking out work from various sources, hoping that a handful of regular part-time jobs atop my burgeoning painting career can allow me to make ends meet.

so, yes, the rub: i’m looking for work. not anything full-time – though my health is stable, i still have lots of regular visits with doctors, and i get ill far too often. i’d burn through a year’s worth of sick days in three months at a nine to five. but if you’re working on a project and could use a hand, i’d love to be that hand. no job is too small.

it’s time to fix the hole.

Posted in gifts, gratitude, loss, migraines, pain, painting, sadness | 2 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 »

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 »

i went to zambia too.

Wednesday, July 11th, 2012

my lovely wife is home! that makes me happy. her pictures are beautiful! they’re here on facebook if you’d like to see for yourself. she had such a great time! the stories about her meeting GW are kind of amazing. of all the people out there around the world with groinstrong bracelets, i think he’s the best get thus far. of course, our feelings are complicated, because, well, he’s GW. but if he did one thing right during his presidency, it was PEPFAR. he may well have saved millions of lives with his support of AIDS education and prevention in africa. still, kathryn was tempted to give him a bracelet and kick him in the groin.

guess what? secretly i went to zambia too! check me out watching elephants ford a river:

my wedding suit held up remarkably well on safari. that’s my second alter ego – TJ (tiny jonah), my muppet, being the first – and this one we call PJ. photo jonah. there’s a whole separate gallery of my trip with kathryn here.

kathryn and i have a handful of days together before i head to montana on sunday with first descents. i couldn’t be more excited about the trip, and i’m incredibly grateful to those of you who have helped me get there. the ticket ended up being nearly $1000, but if the trip is even half as fun as my last FD adventure, it will be worth every penny. glacier is one of my favorite parts of the country, and it’s such a privilege to be able to spend a week exploring its rivers. also, since this is my second first descents trip, i now qualify for FDX, their most advanced class of adventure. this year, their offerings include mountaineering in denali, kayaking the main salmon in idaho, rafting in peru with a trip to machu pichu and a journey through patagonia. heck yeah! i SO want to go to alaska if the trip is offered next year. a new friend/cancer survivor i met at cancercare leaves today for the alaska trip and we’re meeting up once we both return from our travels to regale each other with stories.

a quick health update: i am more or less completely fine. one might say grossly unremarkable. i’m a full six months out from any treatment, and i feel my body growing stronger every day. it’s impossible to comprehend the impact of toxic therapies until they’re well in the past – in the thick of it, you can say to yourself, okay, i’m sick and weak and in excruciating chronic pain. but that realization simply cannot account for the deep destruction that occurs. i’ve written many times about chemo brain and the ways that treatment dulls mental capabilities, and now that i’m good and clear of four years of intermittent poisonings, i’m starting to regain my equilibrium. and it feels SO GOOD. and it will only get better.

thank you again to you all for pitching in to get me to kalispell! and thanks to those who contributed to team groinstrong! so far we’ve raised two hundred dollars in support of first descents. if you’re inclined to support their wonderful work with cancer survivors like me, you can donate here.

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when groinstrong met poopstrong

Thursday, June 14th, 2012

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

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

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

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i pooped today!

Wednesday, May 23rd, 2012

and oh lordy it was difficult. with almost no abdominal strength, it’s extraordinarily challenging to make my newly-reconnected bowels follow my commands. but it was worth the pain, as my swollen, distended belly has retreated a bit. it still hurts like hell, but each day it gets minutely better. only a tiny bit better, but any better is better than any worse.

i’ve been supremely exhausted since coming home from the hospital, and monday night, when i spiked a fever of 101, i wondered if my doctors had jumped the gun a bit. i seriously cannot imagine having to go to the emergency room to be readmitted. but the fevers have gone down, and this is the first day that i haven’t slept all day – though nap time is approaching quickly.

thank you all so much for your visits and kind emails so far. i hope you haven’t had any problems with the care calendar – i know it’s been helpful for me and kathryn. i’m still working out next week, when my dad will take the reins from my mom, who returned home this afternoon. i don’t think i’ll need much support while he’s taking care of me, but the occasional visit is always appreciated.

i won’t find out the full results of the surgery until i go in to see the surgeon some time next week – i’ll send out another email once i have more information. but in the meantime, thanks again for everything! the pain of each aggravated breath, each crippled step, each spasm of pain as i toss and turn at night – it’s so much easier to manage with your support and love.

Posted in gifts, gratitude, pain | 5 Comments »

sunday evening update

Sunday, May 20th, 2012

hi friends – it’s NOT kathryn writing this time. it’s groinstrong himself! aka me.

i don’t have a whole of energy left tonight, but i wanted fill you all in, if the criminally-unstable internet here will allow it.

i’ve made major progress today – they removed my catheter late last night, and i had until eight am to pee or else the catheter would have to go back in… i shudder at the thought. at 7:45 this morning, just under the gun, i managed to urinate. what worked this time was the same as the last – which, it turns out, i remembered falsely. none of the watery songs did the job – instead kathryn came up with a super-effective guided meditation: you’re heading home from williamsburg after a night of drinking with friends. you thought you’d be safe, but peeing before you left only managed to break the seal, and now you want nothing more than sweet release. it’s three AM, and as you stumble down to the platform for the G train, you arrive just in time to watch the train depart. oh crap. what do you do? no one is around! you can just use this plastic bottle…

thusly were the floodgates opened.

on top of taking a pee, i also managed to start passing gas – progress it its own right – but i wasn’t done! i managed to have a small – but extraordinarily significant – bowel movement. i’m ahead of schedule by two or three days, and my advancement could very well mean an early release. there’s already talk about seeing how it feels to have i small amounts of soft food. awesome!

though i’m pretty uncomfortable painwise, it’s made a huge difference to have a private room – the unitarian universalist association keeps an emergency fund for ministers and their families, and they’ve been generous enough to spring for the upgrade, along with a room for my mom that’s near the hospital. with all the pain, fatigue and extreme dietary restrictions of this visit, it’s been such a gift to at least have my space in which to suffer in private.

all in all, though, i’m feeling good about where i am. i’m still in a LOT of pain, but i have tons of entertainment handy and i have a gorgeous view, looking out west to the top of the chrysler building, north to the UN complex and east to the east river, the queensboro bridge and the not-quite-world-famous pepsi-cola sign. i’ve had some lovely visits from friends – i hope the online scheduling system works well for all of you! i’ll be sure to update the calendar with any new information.

Posted in gifts, gratitude, hospital visits, pain | 3 Comments »

calendar for hospital visits and meal assistance

Friday, May 18th, 2012

Well, here we go. I’m scheduled to arrive at 10 am tomorrow, with my surgery taking place at noon. I’ll have Kathryn post an update as soon as we’re through. Cell phone use is discouraged in the waiting room, so please be patient! Without any unexpected complications, I should be through the operation and moved to my room by the late afternoon.

In the meantime, I wanted to explain the process for scheduling hospital visits (and later, meal support and visits back at home). I’ve set up a custom schedule using carecalendar. All the login information is below – as this post gets pushed down the page, you can find all the information near the top of the right hand side of the page under “Visits and Meal Calendar” – if friends ask for visiting information, you can forward that link to them. It can be a little hectic trying to field calls and answer messages to set up visits, so I’m hoping this system helps smooth out the process for all of us! If you’re far away or unable to visit and would instead like to offer your financial support, you can do so by visiting my donation page.

Instructions for CareCalendar scheduling

First, visit my personalized calendar here:

http://www.carecalendar.org/logon/112717

For Calendar ID, enter 112717

For Security Code, enter 7864

Once you log in, you’ll see the calendar page. Empty slots are listed in red – expected in-hospital days are broken up into hour-long slots during visiting hours (10 AM to 8 PM). Click on the date that appeals to you – note: once you click through, you’ll see which hour you’ve selected; if that slot doesn’t work for you, simply use the back button of your browser to return to the calendar.

Please be sure to carefully read the details, as they include important information about the location of the hospital, room number, etc. After you select your preferred date and time, you’ll be asked to enter your name, phone number and email. Give as much information as makes you comfortable, though email is important. A confirmation of your selection will be sent both to you and to me.

Isn’t that so great? I hope the process works well for you. Thank you in advance for taking the time to stop by or to provide a meal! Your generosity and dedication have played such a crucial role in making this exhausting experience slightly more manageable. Kathryn and I both are filled with awe at the way that our community continues to support us in remarkable ways.

See you at the hospital!

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the other side of sunday.

Monday, May 14th, 2012

that being monday. it’s late into the night, or early in the morning, depending on how you’re feeling. me, i’m feeling a bit insomniac-y. not too surprising, i’d say, given what the week holds in store.

the surgery is scheduled for friday, though i won’t know exactly what time it will take place until late thursday afternoon. last week i spent four hours in pre-surgical testing – reviewing my medical history takes an awfully long time – and the nurse practitioner warned me that recovery from bowel resection can often involve lengthy hospital stays for extended monitoring; a full week would not be unusual. that’s an awfully long time in the less-than-pleasant atmosphere of the 16th floor oncology unit, no matter how wonderful the nurses and attendants may be. and they are wonderful, kind and caring, but they still have to put me in a shared room (always a crapshoot) and give me shots of heparin to the belly at 5 am (always awful).

to add to the unpleasantness of this particular recovery, it’s likely that i’ll wake up from surgery with both a feeding tube and a catheter. they shouldn’t remain in place for more than a day post-procedure, but that doesn’t make that initial return to consciousness any less painful or uncomfortable. i’ve never had a feeding tube before, though i have suffered through a catheter. i can’t remember at the moment whether i’ve shared this story, but it’s worth repeating – after one of my many procedures, i was having terrible trouble urinating, and the nurses gave me an hour to pee or else they were going to reinsert the catheter with only a small dose of local anesthesia. how’s that for pressure? i was terrified of the possibility but struggled in vain. my parents and kathryn gathered at my bedside and began to sing songs about water. the beatles’ rain. the melodians’ rivers of babylon. did they sing row row row your boat? perhaps. i seem to remember the song that finally helped me fill that small plastic urinal was jimi hendrix’s may this be love [aka waterfall - sorry, the best clip i could find was daniel lanois' cover - still worth a listen]. hopefully i won’t need another making-water medley.

my surgeon is mostly sure that he can perform the procedure laparoscopically, though there’s a chance that my attempted bowel surgery a couple years back left behind scar tissue that could interfere. if the robots can’t find a way in, they’ll have to make a midline incision (don’t worry, the link just goes to a graph – but you can always image search it yourself if you’re feeling gruesome). i’d like to avoid the larger incision, obviously – getting opened up that way would dramatically increase my healing time as well as the amount of pain i’d suffer. when i wake up, tubed through various orifices, i’ll find out immediately what access strategy my surgical team utilized.

in the meantime, i’m doing my best to enjoy myself and stay as healthy as possible. i’ve started seeing a chiropractor whose office also offers massage and physical therapy in a single visit – even though their office is in midtown, it’s worth the trip. the physical therapy in particular is making a big difference in reducing my pain and increasing my flexibility and range of motion – the many surgeries to my left leg have made it markedly shorter than my right, causing all kinds of imbalance and pain. we’re working together to try and straighten me out again. i’ve also found an acupuncturist – i emailed him with my sob story and billy, quite generously, offered to see me for free, for as long as it’s helpful. generosity like that is so rare, and i’m incredibly touched that he is so willing to help out. if you’re looking for a brooklyn-based acupuncturist, billy is great! i doubt i’ll be able to stomach (ha!) the effort necessary for any of those treatments post-surgery, so i’ve got a busy week trying to cram it all in before friday.

my acupuncturist is not the only person for whom i am grateful – i’ve received so many heartfelt messages of support, donations and books to read and offers of visits, blenders and baby food cookbooks. kathryn found a site that automates the process of scheduling meals and visits for those in need (aka me!), and i’ll let you all know when i have it set up. i know it’s a less personal method of managing the ways that you can help, but man, you all love me so much! it’s helpful to be able to space out your support and not burden me or kathryn with constant planning. i know you all understand.

one last thing, if you’re still reading this over-long post: mother’s day has come and gone, but i want to take a quick moment to acknowledge moms. and not only my wonderful, dedicated mom, because she is the best – she’s coming to help out and hopefully get me home from the hospital after the weekend. but now, being in my early 30s, so many of my friends and peers have become mothers, and it is such a marvelous joy to see these young mothers, to celebrate with them, to be a part of their lives whenever possible. i would love to spend the summer traveling from family to family across the country – seeing beloved friends and their children i have yet to meet, dash in the tower especially; seeing godsisters and godchildren and nieces named mabel; the twins in arcata; babies in oakland, omak, charleston, austin. kathryn and i have had to delay our family planning plans; i have to be a full year free of any treatment before we think about it, and even then it’s more than likely that i’ve been sterilized by the years of chemical onslaught – i’m so grateful that my oncologist suggested a visit to a sperm bank before i started any treatment. in the meantime, it gives me such pleasure to join with you in celebrating the miracle that so many of you have brought into the world. well done, mothers of the world.

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Posted in amazing, chemotherapy, events, gratitude, hospital visits, images, links, love, music, pain, physical therapy, rock and/or roll, videos | 3 Comments »

austin! awesome!

Wednesday, April 18th, 2012

hello friends! i’ve been crazy busy this week and haven’t had a chance to post. so much has happened! all good stuff. my dad was in town a few days back, and we ate our way through the weekend. an old friend/band-mate and his (newly pregnant!) wife were also here for a visit. it was wonderful to catch up as we strolled together through a hot and rowdy saturday night in the east village. and i’ve been getting everything ready for my trip – i leave for austin in a few hours! kathryn’s brother scott is getting married the first weekend in may, and his friends are throwing him a bachelor party in austin! my only visit to austin was an overnight stop during an epic, too-fast cross-country road trip from albuquerque to austin to poughkeepsie (2,500 miles in under three days). between austin and new york we made only a single tourist stop – graceland. my god elvis had bad taste.

so now i get to experience austin for real. as an added bonus, the family of my sister’s husband andy lives in austin, so i get to see them too! it’s an all brother-in-law-focused weekend. BILF WEEKEND! ha.

i’m glad i can stay with andy’s family – the late nights and heavy drinking that are sure to commence are neither appealing nor possible. though my body continues to improve, i’m still keeping teetotally away from alcohol. it’s funny; five years ago, when i was bartending all the time and drinking well beyond reason, the suggestion that one day i would willingly dry out would seem about as likely as a new york mets/oakland a’s world series. but now, after all my body has been through, yet another poison holds no appeal. i’ll have a sip here and there, but after even a few sips i start to feel awful.

and of course i’m also glad to see andy’s family because they’re wonderful! with so many old family friends at jessie and andy’s wedding, it wasn’t a great time to get to know new friends, so now i’ll have the luxury of a gorgeous weekend of texas spring to spend some time going deeper with the anderson furgeson family.

in the meantime, i’m doing my best to care for my ailing back, though every day ends with me limping and crippled. next week i’ll get a cortisone shot and begin a combination of chiropractic adjustments, physical therapy and acupuncture. i wish i could avoid the hassle of air travel – i’m definitely bringing my cane and pulling the C card for all it’s worth.

new york: i’ll be back on monday. don’t have any fun without me!

Posted in events, pain, physical therapy, travel, weather | 3 Comments »

as if i didn’t have enough to worry about…

Thursday, April 5th, 2012

last week i received an MRI of my lumbar spine to try and figure out why my legs were so constantly achy and weak. the ongoing recovery from my ACL surgery only magnifies the low to moderate chronic pain. i met with my pain management doctor today to get the results – he’s a new addition to my ever-expanding stable of medical professionals (a baker’s dozen on speed dial!). and thank goodness for him; you may remember that my former pain mismanager and i had, shall we say, philosophical differences?

about ten years ago, i stupidly, drunkenly fell/was accidentally pushed off a balcony, fracturing my tailbone and sustaining some minor spinal damage that ailed me for quite a while. it didn’t help that the medical “professionals” in charge of my care (through kaiser in oakland) were awful, uncaring shills for painkiller suppliers – it took threatening my doctor with legal action just to get him to stop giving me larger and larger doses of vicodin and get me my first x-rays (months after my accident – for reals!) and finally into the capable hands of a wonderful physical therapist. luckily, i know a lot more these days about managing my care. while the injuries haven’t bothered me for some time, i’m not surprised to hear that my lower back is in pretty bad shape. the four years of on-and-off steroid use and heavily toxic treatments can’t have helped anything, and with my deteriorating body and anemia, my once religiously followed regimen of exercise and yoga has fallen by the wayside. way by the wayside. like past the wayside and into the next county. ok i don’t exercise ever, more than irregular light stretching. but i bet you wouldn’t be interested in stretching if you had…

three bulging discs (three!), in the L2/L3, L3/L4 and L4/L5 vertebrae. on top of that (or below, more accurately) i have an extruding (aka ruptured) disc on the L5/S1, the vertebra that joins my lumbar (L) and sacral (S) sections of my spine. extruding/ruptured is a step beyond bulging – if the intervertebral disc is like a jelly doughnut, then the disc = dough, and tissue within the disc = delicious jelly. but oh no! messy rupture! in an extruding disc, the jelly/tissue inside the disc/dough has leaked out (if you’re interested, you can check out a better non-doughnut-related explanation here). the leaking proteins from within the extruding disc could be aggravating a nerve root within my spine, which could absolutely cause the pain and weakness (and occasional tingling) in my legs. at the same time, my pain doc explained that those who suffer from lymphedema can experience chronic pain in the affected areas. we may also try a cortisone shot to relieve the intervertebral swelling if the prescribed course of action isn’t effective.

as i gear up to begin the ipi infusions next week, i’m also starting a course of physical therapy and chiropractic adjustments, along with returning to acupuncture (which i’ve been meaning to do anyways). it’s really not such a bad idea – the focus on keeping my body as healthy and limber as possible may help me deal with potential fatigue and further pain. and hopefully, with a little stretching and careful maintenance, my body will recover quickly. and who knows? perhaps the immunological response triggered by the infusion will magically make my edema disappear and my discs will return to their normal size and proper place.

a boy can dream, can’t he?

Posted in gratitude, links, pain, physical therapy | 3 Comments »

no protein. no vaccine.

Friday, March 30th, 2012

today is not my favorite day.

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

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

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

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

so, on to our new plan:

yervoy, aka ipilimumab.

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

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

however.

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

also known as death.

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

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

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

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

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

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

and for that i am eternally grateful.

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

gary’s memorial service

Tuesday, March 20th, 2012

sorry for the delay in posting there. i’m still waiting for the protein test results. as much as i appreciate the break from treatment – in particular the opportunity to grow back all of my hair – i don’t want to risk my disease advancing. hopefully i should hear any day now, and of course i’ll let you all know as soon as i get the results.

i’m headed back to my painting class tonight, and i’m not looking forward to seeing my work from last week. i was so pleased with how the minnesota sunrise turned out. i decided to take carolyn d’s advice and try a california painting, but it just didn’t pan out. i might be able to salvage it tonight with some new layers of paint, but i think i’ll just have to start over. sigh. painting is hard!

i thought some of you might be interested to know that gary’s public memorial service this afternoon will be live streamed. the service is at 4 pm central (5 pm eastern, 2 pm pacific) and is watchable on the university of minnesota events site here. many thanks to gary’s widow estelle for sharing the link. estelle, my heart goes out to you and your girls. gary was so special to all of us, but of course even more so to all of you. i’m sure the service will be beautiful, and i’m so glad that us out-of-towners have an opportunity to watch.

 

Posted in art, events, links, loss, love, pain, sadness, videos | 3 Comments »

another sleepless night.

Thursday, March 15th, 2012

it’s closing in on 4 am, and it’s likely that i’ll see my second consecutive dawn. today (after a night of absolutely zero sleep) i spent a ten hour day wrangling my favorite one-year-old (also the leading candidate for kidnapping and absorption into the eller-isaacs clan). i thought for sure that after one night without any sleep at all and a day spent rampaging through playrooms and playgrounds that i would crash, and crash hard. i was well and truly spent earlier this evening, but my brain refuses to shut off for the night. i’ve started a regimen of exalgo, a new time-release pain medication (it finally arrived yesterday! one less thing for waiting!) and 13% of users experience insomnia. i am most definitely in the 13%. i’m hesitant to turn away from the drug, since it’s brought a modicum of blessed relief to my aching legs. still, i don’t want to be awake right now.

and so i turn to you, my dear, dear readers, to see if writing will heavy my eyelids and soften my mind. unfortunately, the topic is less than soporific.

i want to talk about resting in peace. the permanent variety.

within the last week, both my home churches of oakland and saint paul have experienced the wrenching heartbreak of loss, and my heart goes out, as far and as deeply as i can send it, to those grieving and saying goodbye.

i didn’t know kevin mcgown all that well, but many of you did. like roses twining amidst the briar, a touching memorial has grown on his facebook page (i think you have to be a friend to see it). the outpouring of love and tenderness is a testament to all the love and happiness he brought to the world. he will be sorely missed, i’m sure.

as will gary decramer.

ah, gary. i knew you well. your passing devastated my family and brought deep sadness and pain to countless others. gary was among the very first people (along with his lovely wife, estelle) who welcomed my family to saint paul with open and generous arms. he was kind. and not in a “minnesota nice” sort of way. he was profoundly kind. looking across a coffee hour of strangers, feeling homesick for california, hating the winter and missing the blessed, distant congregation of my childhood, i knew that if i saw gary’s face that i would soon be engrossed in both a bear hug and a true and caring conversation. my fondest memories are of singing with gary and estelle at our annual post-thanksgiving singing party. gary had a lovely voice, and he put all his joy and love and truth into each note he sang. i’m sure the music at his memorial service will be stirring, and i wish i could be there.

a few years back, my semi-annual collection of christmas mix CDs included a collection of favorite songs from the singalongs. one of my favorites is malcolm dalglish’s shake these bones:

I’ll show you how I’m feeling Lord, any day
I’ll shake these bones and shout and sing my life away
I’ll shake these bones and I will shout and sing my life away
For it won’t be long before these bones turn to clay

you can listen to and/or download the song here. (to download, right-click or control-click on the link and select “save link as…”)

the loss of our friends is nothing new; all our lives must come to an end at some point, though the absolutism of our ends does not prevent our railing against its unfairness. but the joy with which we live, the principles to which we dedicate ourselves, the ways that we embrace humanity and the world around us – the shaking of our bones – that, my friends, outlives us all.

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Posted in loss, pain, religion, sadness | 6 Comments »

seven to ten days of more waiting.

Tuesday, March 13th, 2012

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

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

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

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

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