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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 »

the turning of the year

Friday, January 4th, 2013

it’s 2013. the future is now, i guess. i don’t know about you, but i think the mayans were on to something. not the doom of december (which was all mangled interpretation anyhow) but this past solstice being the terminus of one long cycle and the triumphant rise of a new way of being.

death tarot

it’s like the death card in the tarot deck – it doesn’t mean that you’re going to die tomorrow. it’s all about change, moving from one state to another. that sort of growth doesn’t come without pain and sacrifice, but with enough patience and determination, transformation is achievable. the fields must be reaped before the seeds of next year can grow. after a difficult year (albeit one that *did* include, on an important personal level, my kicking cancer right in the groin) i’m feeling especially hopeful that my own demons have met their end.

and now it’s time to move on.

i sat down ready to tell you all about christmas, but oops, death. let me get back on point.

kathryn and i spent a marvelous week in minnesota with my family. my whole immediate family joined the fun, one sister with her husband and one sister sadly without her boyfriend. we enjoyed a couple days in the twin cities, which gave us time to meet the two newest additions to my extended family (kaius and maya! they’re adorable, obviously). we also attended two of the five (five!) christmas eve services at unity church – it’s always such a powerful experience to be in the embrace of the church community there. they’re so loving and supportive of our whole family (and, as i’m well aware, are among my most dedicated readers). it was such a treat to see the new construction – they’ve made some dramatic changes to much of the church, and it looks and feels welcoming, open and warm. i know many of you were deeply involved in the planning and development of the project, and you should all be most proud.

our brief visit to unity also gave me time to deliver my recently completed commission for a member of unity. this painting was a struggle – my initial version wasn’t right, as both the buyer and i agreed, and my changes to it didn’t work either. so i re-gessoed the canvas and started fresh, and the final product ended up being a complete departure from my first attempt, and, ultimately, much more successful (at least *i* think so). the first draft is on the left; the last, “bohemian waxwing” is on the right. you can click to embiggen, though i apologize for the poor-ish quality – these will have to do until i have time to go through some of my pictures.

first draft     bohemian waxwing

my painting work has taken off recently, and i have a backlog of a half-dozen commissions that i’m itching to get started. i’ll be in the studio tomorrow, and i’m planning on spending some significant time next week putting together a website for my art. i’ll be sure to post it here (and on facebook, and email it to everyone i know) once it’s ready.

again, i’ve veered off topic. back to christmas.

after the pageantry of christmas eve (i have some adorable pictures of toddlers dressed as cherubs) we spent the morning exchanging gifts and wishing that my missing sister and her husband would show up from austin already – their flight that night was canceled and they ended up coming the morning after. still, i have no problem with multiple sessions of present-opening. over the past few years, it’s become traditional for our family to try and give as much as possible that’s created by hand (though, as hannah likes to point out, ipads are made by hands – unhappy hands, but hands nonetheless). jessie made a batch of gorgeous new stockings, mine adorned with poppies and a palette of paint, kathryn’s with crafting supplies, along with holiday-themed loveliness. we traded pictures and art honoring the memory of our dearly departed dog maggie.

luckily the delays in our gathering together didn’t prevent us from spending the rest of the week up north at our beloved cabin in the chippewa national forest. it was cold – dipping below zero at night – but that didn’t stop us from dashing to the hot tub each night. we ate like kings – roasted duck pizza, pulled pork, lots of bacon. we played games. we played music. we laughed. we watched old kevin kline movies on vhs. we walked on freshly fallen snow across a frozen lake.

it was perfect.

Posted in art, events, gifts, gratitude, images, loss, love, music, painting, religion, tarot, travel | Comments Off

Caring in times of great need

Wednesday, October 31st, 2012

Kathryn and I are tremendously lucky to have managed the storm with so little personal impact. Everyone we know seems to be safe and dry, and while our Manhattanite friends continue to struggle without power or hot water, we’re counting our blessings that all our utilities are still with us. Our water tastes sharply of chlorine – Bloomberg announced that our drinking water is being heavily treated, but other than that and our internet service slowed to a crawl, our life is unchanged. The one exception is that, given the impossibility (or at least major inconvenience) of inter-borough travel, Kathryn is stuck at home. It’s been such a pleasure to get such a long, uninterrupted stretch of time with her – she’s been working her tail off and it’s awfully nice to have a few relaxing days together. That said, we can’t continue simply observing the continued hardship, so tonight we’re planning on going to Red Hook – a nearby neighborhood that saw significant flooding and damage – to help cook dinner at a shelter. It’s not much, but with travel so limited and real help best left to the experts, it’s the least we can do. I encourage you all to give to the Red Cross to help with hurricane recovery.

I feel a little strange focusing on something other than Sandy’s aftermath, but life goes on. There’s only one week remaining in the Caribou Coffee campaign to support CancerCare, and I want to reiterate again the importance of this effort. The reports of NYU Langone Medical Center’s evacuation were deeply distressing, and I’ve never been more glad to be healthy and not in the hospital. The burden of cancer patients was illuminated in stark detail in a news item Kathryn noticed that said Access-a-Ride was helping those undergoing chemotherapy or radiation manage the trip to treatment. With the subway system still in shambles, traffic around the city is snarled. Regular cancer treatment is exhausting enough; I can’t imagine how hard it must be with the added endeavor of storm-related inconvenience.

CancerCare‘s office is on the 22nd floor – if the power is out (as I believe it is), it’s unlikely that they’re back at work. But given their dedication to their clients, it wouldn’t surprise me if folks are making the twenty-story climb. Caribou Coffee’s generosity isn’t simply corporate image building – they truly believe in doing good, and they’re smart to partner with an organization that supports so many people in need. The like-to-donate campaign ends next week – please be sure you’ve liked Caribou Coffee on Facebook and spread the word as best you can.

I’m so glad to be able to help with this effort, and though I would have done so regardless, Caribou was nice enough to send me a package filled with Amy’s Blend merchandise. Though the wonderfully delicious pound of coffee is long gone (and we wouldn’t say no to more!), they also included a set of hot and cold tumblers. If you’re in the market for something new and flashy for drinking (with hot pink styling!), I encourage you to make your way to a local Caribou Coffee and get some Amy’s Blend products! They’re not nationwide (yet) but you can find the nearest location to you on their website. Remember, 10% of all purchases are donated to CancerCare!

Since Kathryn is home from work, we finally had some daylight to get pictures of my Amy’s Blend merch. Check out the CancerCare cap and my new favorite t-shirt, custom designed by my old friend and dedicated supporter Anne Heller:

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Posted in advertising, cancercare, gifts, gratitude, images, links, merchandise, weather | 1 Comment »

a tour of local damage

Tuesday, October 30th, 2012

we’re watching in dismay as reports continue to pour in of the devastation across the northeast. though we’re extraordinarily lucky to live on higher ground, just a few blocks away the scene is awfully messy. the gowanus canal breached its banks, and at the end of our street where it dead-ends at the canal, folks are pumping multiple feet of the toxic sludge out of their basements. the gowanus is one of the most polluted bodies of water in the nation, with active strains of syphilis, gonorrhea and carcinogenic heavy metals all present. a couple years back, a very lost minke whale (nicknamed “sludgie”) swam into the canal and dissolved. this is NOT the kind of water you want to be near, much less dealing with it invading your homes or offices. some close friends of ours have a production studio on the banks of the canal, and everything four feet and below is covered in slimy, oily residue.  luckily they were able to move out the most crucial and expensive equipment before the storm.

kathryn and i took a short walk through the neighborhood to get a sense of the damage. our block managed to keep all its trees in the ground, though there are a ton of fallen branches. one of the scaffoldings surrounding the construction site across the street collapsed in the middle of the night – at one point i heard an enormous, metallic crash which i assume was it falling down. the park down the street didn’t fare so well either, and has lost most of its largest, oldest trees. even though carroll gardens was mostly spared, there’s still a lot of cleanup yet to come. i can’t imagine how long it’s going to take for the city to recover from this historic storm. we’re not expecting the subway to open any time soon – i’ve heard rumors that the MTA might manage to start limited service by the weekend, but with major flooding in nearly all of the tunnels that travel under the rivers, it’s going to be a while. the images are startling, aren’t they? atlantic city devastated. NYU langone medical center, the hospital i know so well, evacuating its most critical patients amidst the worst of the storm after backups to the backup generators failed. cars floating down wall street. the entrance to the battery tunnel filled to street level. a whole neighborhood in queens burned to the ground. i’ve lived through a couple major natural disasters, in particular the 1989 loma prieta earthquake and the 1991 firestorm in the oakland hills. but i don’t think i’ve ever seen damage on such a widespread scale. it’s going to take weeks for the eastern seaboard to recover. if you’re near us in brooklyn and need assistance, please be in touch.

in the meantime, here are a few pictures of our neighborhood:

Posted in events, gratitude, images, loss, sadness, weather | 1 Comment »

CancerCare makes me feel better

Tuesday, October 23rd, 2012

Well, it turns out that vocalizing everything I’ve been dealing with really helped (see yesterday’s post for more). I had my most satisfying day in a long time. I started the process of moving into my new studio, and the canvases are heading over today. I can’t wait to start painting! And after a productive day, Kathryn and I celebrated our anniversary by spending hours in the kitchen to recreate the meal from our wedding reception: pecan-crusted brook trout in beurre blanc, ginger smashed sweet potatoes and green beans with fried shallots. I think we’re going to make the same meal every year. Check it out!

Yesterday, after a long talk with my parents – with me wishing I could join them at our lake house in Minnesota – I had a session with Sarah, my counselor at CancerCare. Since my diagnosis, she has worked tirelessly with me to keep my spirits up and my life on the right course. I could never afford our weekly sessions, and CancerCare’s generosity that allows me to gain insight from her leadership has made a marked difference in my life. In my darkest times, she’s helped me to see the light. I honestly don’t know if I would still be alive without her. As I’ve said before (and I want to reiterate that it’s never going to happen) things have occasionally been so bad that I’ve considered taking my own life. But every time I’ve been paralyzed by fear and anxiety, or so sick that I cut short my commute and headed home from the next station down the line, or in so much pain that I could barely move, Sarah has been there. CancerCare has been there. I am a stronger, more thoughtful and more compassionate person because of CancerCare.

It’s been a great privilege to be able to work with Caribou Coffee on their campaign to support CancerCare this month. The folks at Caribou Coffee have been remarkably generous to have me involved, and I’ve tried my best to make it clear how important CancerCare is to me – and I’m just one of the tens of thousands of people affected by cancer that they serve every year. I hope that you’ve liked Caribou Coffee on Facebook and relayed the details of the campaign to your various online networks. So far, Caribou has racked up over 19,000 new likes this month, and each like equals a dollar for CancerCare. Each like equals more funding to support people like me, whose lives are turned upside-down by cancer. Each like equals more CancerCare, more resources for patients, survivors, caregivers, friends and family.

Caribou’s campaign ends November 7th – please be sure to like Caribou on Facebook and pass along information about the campaign!

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Posted in advertising, gifts, gratitude, images, love, sadness, therapy | 2 Comments »

sharing talents

Tuesday, July 31st, 2012

this weekend, we hosted the 2nd annual east coast all-participatory talent show/BBQ/birthday celebration, or 2AECAPTSBBQBC. the acronym just rolls off the tongue, doesn’t it? my great (as opposed to good) friend annie bacon founded the talent show some years back, with the emphasis on all-participatory. the mandatory nature of the talent show leads folks who wouldn’t usually get up in front of others and put their abilities on display – people get up and show their bellies and say “i’m creating life” or they bring their remote control helicopters and perform tricks or they lead the audience in camp games. all kinds of goodness – man, we have some talented friends. kathryn’s talent this year was a play based on her visit with george w. i still can’t believe that after being told about my battle with cancer, he joked, “well, i hope it’s not cervical cancer, ’cause then we got bigger problems.” (he was in zambia with laura to work on cervical and breast cancer awareness).

i wanted to demonstrate my newly-discovered talent for painting, so i set up a station in the living room and asked the audience for suggestions on where & what i should pain – color choices, brush type, stroke direction, area of the canvas etc. i’ve posted a gallery of the process and final product here. i call it “groupaint.” i think it finished up pretty well!

Posted in art, events, images, painting | 1 Comment »

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.

Posted in amazing, cancercare, chemotherapy, gifts, gratitude, images, pain, travel | Comments Off

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 »

in lieu of my opinions…

Saturday, June 30th, 2012

i’ve tried to find time over the last couple to days to express my excitement about the affordable care act, but instead i’ve found myself covered in paint. i finished my first commission, called “dominicana” – it’s 30 by 40 in.,  far and away my largest canvas so far. there’s still so much to learn – a feeling that i love. my new friend melissa was incredibly brave and generous to be the first to commission a painting from me – she was a total stranger who learned of groinstrong a couple years back and saw my paintings from class here. she and her husband tobi were willing to front part of the cost, which allowed me a giddy shopping spree at pearl paint to set myself up with all the necessary tools of the trade. it’s not like i had a small studio’s worth of acrylics just sitting around.

i’m pleased with the final product; more importantly, melissa and tobi love it. this whole process was so much fun that i would like to announce that i’m officially open for business as an abstract painter. if you’re interested in commissioning a work, definitely get in touch with me! you should probably get one now before i become a famous artist. riiiiiight…

here’s the final product, along with detail. click to embiggen.

this new world of visual art has come into my life so suddenly, and it’s such a joy. i find painting meditative, serene and transportive in ways radically different from my usual creative pursuits of music and the written word. instead of writing this week, i painted an entry for a contest – the lilly oncology on canvas contest – that asks entrants to express their cancer journey through two-dimensional art. i don’t care so much about winning, though $10,000 to the non-profit of my choice would be nice. groinstrong is a 501(c)(3), right? it’s a good cause; that’s enough, i think. regardless, the process and product are more important than any prize. artists must also submit a short narrative of their painting. i call mine hand in hand.

hand in hand

Cancer left me adrift in a dark sea. I negotiated waves of metastases, the ebb and flow of surgical recovery, and the undertow of lasting effects brought on treatment. Days, weeks, months, years washed away while I tried to right the ship of my life.

And yet, simultaneously, the journey of surviving cancer has illumined a path toward the greatest heights of myself. Living with the disease has taught me empathy and understanding for those grieving and in pain. It has shown me the true value of the embrace of a caring community. Cancer has shown me that I am made of stronger stuff than I could ever have known.

The dark tides of cancer go hand in hand with the illumination of the self.

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Posted in advertising, art, gratitude, images, painting, therapy | 3 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

the mystery of the unknown blender…

Wednesday, May 16th, 2012

yesterday afternoon i received a package from amazon. the company, not the rainforest, obviously. no poison dart frogs here!

though we have many tools that will aid in my upcoming liquified diet – cuisinart, blender, juicer – we forgot to add an immersion blender to our wedding registry, and we’ve pined for one since.

and amazingly, this mysterious box held a gorgeous immersion blender. in groinstrong hot pink, no less!

to add to the intrigue, the package included no card, no information about the purchaser, no note to explain its origins.

if you, the donor, would prefer to remain anonymous, i understand. but if this mystery was unintentional, and amazon forgot to slip in a card from you, please let me know! i would like to thank you appropriately.

my friends on facebook saw this already, but i’m going to repeat it regardless:

what a curious incident. you might say i’m… immersed in the mystery.

heyo!

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that’s entertainment!

Tuesday, May 15th, 2012

many of you have experienced that when i get excited about something, i get REALLY excited. like uncontrollably excited. i’ll interrupt anything you’re saying, regardless of topic, to share my enthusiasm. yeah, i’m working on that. but i wouldn’t want to temper my crazy love for anything and everything.

so today i would like to share my excitement and give a shout out to our friends michael and zach. i feel so blessed that kathryn started a friendship with them many years ago – we’ve had some wonderful adventures and shared some of our most meaningful times together. michael and zach are among the top contenders for the most generous people i’ve ever met. they may just take the prize altogether. they helped us manage getting to coachella two years ago (my first ever music festival). they’ve invited us multiple times to the bloomberg company’s annual summer party (the company rents out randall’s island for a massive fair with free food and drink, live music and carnival games and so many amazing things!! it’s SO fun!!). last year we all traveled to vermont so they could be legally married – kathryn was deputized for the day and performed the ceremony, while i became the artistic director/wedding band/photographer. it was a marvelous, magical trip, and we could never have joined them without their generous help. and when i tore my ACL 100 yards into my first run of the weekend (booo!), they paid my hospital bill (yay! i paid them back eventually).

we’ve been lucky enough to dog-sit numerous times for their lovable, spazzy boston terrier, pugsley, and we’ve used every opportunity - birthdays, holidays, anniversaries – to slowly adorn their apartment with endless images of pugsley and his ilk. i met kathryn outside their old apartment for our fourth date, having recently received a grim prognosis from my oncologist. we were terrified and weepy and loving and caring far beyond the norm for a new relationship. we were able to enjoy the comfort of a cuddly dog, cable TV, lots of guitar hero and views from their old place, a penthouse on houston looking up the length of second avenue. in fact, that moment was one of the few we chose to celebrate in the art project for the wedding that so many of you helped us create. our friend jordan captured the moment beautifully (see right).

it’s such a gift to have friends that love to share so deeply and expect nothing in return – though of course we do our best to wine and dine them when we can. last night we had them over for a delicious dinner (kat and i made szechuan/five-spice pork tenderloin, mashed parsnips and kale salad with toasted almonds… mmmm!). at some point during the meal, i asked michael if he would be willing to bring me some comics while i languished in the hospital. he apologized and said that he was only getting digital comics at this point, then paused and realized his old ipad still had hundreds of comics, and since he’d just gotten a new model, he didn’t need it any more – so he offered to loan it to me while i was convalescing. woohoo! but wait, it gets better. we talked about how awesome it would be for me to have the slim ipad instead of my usual messy stack of comics spread across what little space i call my own – i tend to explode my belongings all over my tiny curtained “room” – and a moment later, he asked, actually, do you want an ipad? my answer was OH MY GOD YES I WANT AN IPAD!!! i seem to remember raising my arms in triumph. because, man, i have wanted an ipad SO BAD and i love new toys and i love having distractions from so many days in the hospital! those long, boring days and the even-longer nights can drive me crazy, and it will be such a gift to have so much entertainment in such a small package. (i can’t resist: that’s what she said!)

so thanks, michael and zach, for everything you’ve done to support me and Kathryn, for all the wonderful adventures we’ve had together that would have been impossible without your help. thank you for being in our lives, and for sharing yours with us. i know kathryn cares deeply for both of you, and i’ve grown to feel the same way. you make it so easy!

love you guys!

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Posted in amazing, art, gifts, gratitude, hospital visits, images, love, travel | 2 Comments »

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 »

view with caution

Monday, May 7th, 2012

i haven’t had a chance to put together our pictures from the wedding this weekend, and this is definitely not the kind of image i was hoping to share today. it’s so graphic that it doesn’t seem fair to you viewers to force it upon your tender eyes. i have a large, ugly mass growing in my jejunum, where my small bowel meets the stomach. i like to call it my (je)june(um) bug – if you’re feeling brave, you can click here to see the graphic endoscopy results. the light pink is the healthy tissue – that gross pile of bloody mess is obviously not. it’s dangerous enough that it has to come out – it could cause bowel perforation or obstruction, both of which would not be very fun. and we need to move somewhat quickly, so my bowel resection surgery is scheduled for next friday the 18th of may. if all goes well, i’ll spend 3-5 days in the hospital, 2 weeks of eating soft food only and 4-6 weeks to more or less recover. it’s a pretty busy time for kathryn, so i’ll be calling yet again on those of you who have some time to come and visit and put my steak in a blender.

in the meantime, i’ll find some time tomorrow to tell you all about our lovely weekend in nashville and the wedding of scott, kathryn’s eldest brother, and his wonderful new wife laura. it was close to the hottest ever start to may down there – i’ve never sweat through my tie before – but the heat couldn’t keep us all from having a fantastic time.

weird, kathryn just pointed out that i had another major surgery two weeks after her other brother doug was married back in 2008.

good thing she’s all out of brothers.

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i second that emotion chart

Wednesday, May 2nd, 2012

i’m finally coming back to life a bit after an exhausting start to the week. i had a whole slew of appointments and meetings scheduled yesterday and monday that fell by the wayside. i was especially disappointed to miss the first session of my new drawing class, but given that the creative center caters to people with chronic illnesses, they understand when life gets in the way. still, i hate having to make sacrifices when fatigue or medical responsibilities demand my time. such is life.

and my energy is returning just in time, as we leave in a few short hours for scott and laura’s wedding in nashville! kathryn’s eldest brother – and her whole extended family, really – has provided both me and kathryn with much-needed support ever since we started dating – the anniversary of which coincides with the anniversary of my diagnosis. it’s been four years now! it’s a little intimidating to be staring down a busy weekend when i’m feeling so run down, but i’m sure all the love and wonderful company will help me rally.

i saw this chart posted recently on xkcd and had to share it. though the variables and timing are off, the sentiment is awfully accurate.

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status: it’s complicated.

Tuesday, May 1st, 2012

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

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

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

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

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

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

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

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

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

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

it’s time to rest for a bit.

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

(some of the) pictures from austin

Friday, April 27th, 2012

kathryn and i are about to head off to a weekend in westport, but before i go, i wanted to share some pictures from my visit to austin. these are on facebook already, but most of the people featured herein are not members… weird… the bachelor party pics are still in development, though i’m not sure they’ll be allowed to see the light of day. i wish i’d gotten some pictures of jim and barbara and their lovely house and gardens, but i suppose i was at my very most relaxed when i was there and thus unmotivated photographically.

you can play the slideshow below (hit the big green play button to start), but i recommend you visit the link here (click “slideshow” [far left top-ish] to watch it full screen). better viewing and easier to read my witty captions!

oh also i should be getting an endoscopy on monday. my docs want to check out this suspicious spot. i’m not worried, because the result is for informational purposes only and won’t lead to any change in plans or dramatic actions.

have a lovely weekend!

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music for patience and/or patients

Wednesday, March 14th, 2012

i just can’t resist sharing more andrew bird. did i happen to mention that i sold my beautiful, battered bass guitar to his bassist? well i did. obviously andrew bird is a remarkable and uniquely skilled artist, but his new bass player/backing vocalist is supremely talented as well. i can’t imagine finding a more appropriate home for an instrument that’s even older than me. how far it has come since i found it in my parents’ basement!

the band was on the colbert report last night, and their performance of a second song was exclusive to the colbert nation site. the track is one of my favorites from the new album and they absolutely shred this gorgeous, hypnotic, congolese-influenced composition. as much as you can shred while whistling and playing the violin and glockenspiel.

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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 »

where amazing happens.

Wednesday, February 29th, 2012

i just made this special thank you for all of you generous people out there. the way that you’ve rallied around me, this and so many other times, truly is amazing.

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