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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

florida: we close at 9 pm.

Tuesday, December 11th, 2012

i’ve wanted since coming home to share with you stories from our weekend in florida. but i’ve been busy, which is a good thing and the system i use to post via email has stopped working. i didn’t realize how often i was writing on the train until i couldn’t any more.

the wedding was awesome. kathryn’s extended family is wonderful and so our their friends, and it was a delightful privilege to celebrate with them. the company was excellent, the setting was superb, great food, long dance party with a great playlist – can’t hope for much more! our hotel was right on the river and ibises grazed the grounds.

it was a quick turnaround, only to be down there from friday night to sunday mid-day, and it didn’t help that our flight home was caught in a holding pattern through rough weather. still, as louis C.K. points out, it’s hard to complain about the magic of a steel bird flying many miles up into the air and getting you safely to your destination 99.9% of the time. we were hours late, but it would have taken far, far longer on the bus. or walking.

i started this point some while ago this evening, and my description of our swimming with the manatees got totally out of hand. i’ll try to find time tomorrow to finish it up. because it was super, super amazing. we had an underwater camera and got a DVD of our trip, so i’ll post those eventually.

after many weeks of struggling mightily, i feel like i’ve turned a corner. this morning i started working with a close friend who, for many years, has offered his services as a personal trainer to help me rebuild my so very broken body. i’m sure i’ll be stiff tomorrow but it feels so good to be breaking a sweat (a light one, for now). almost every day this week i’m scheduled to spend time with kids, and that (in reasonable doses) is just about my favorite job. wait, i’m playing hide-and-seek and getting paid for it? today i brought my work home with me: a drawing from our 5-year-old neighbor dash, with a note to kathryn written inside a heart:

UR MY BEST NABR.

how great is that?

Posted in amazing, events, gratitude, love, travel | 1 Comment »

we’re prepared!

Monday, October 29th, 2012

i spent this past weekend in the bay area for the wedding of one of oldest and most-dear friends from high school and his wonderful wife. it was a dia de los muertos-themed wedding, with skulls and death-related decorations making for quite a unique scene. we processed from the mills college student union to their gorgeous chapel, led by a 25 foot tall illuminated skeleton puppet. wow. it was a lovely weekend, absolutely worth maxing out my credit card and using the last of my savings to make the trip. i’m still close with many of my friends from high school, though we don’t get the chance to see each other as often as any of us would like. the weather was picture-perfect bay area fall, the company was of the highest caliber, and i even got to spend a day helping my grandmother run errands. if only my trip hadn’t been cut so short.

i apologize if i didn’t have a chance to visit with you during my time in the bay; i’d planned to return to brooklyn on tuesday. but mother nature has thrown down a dramatic gauntlet of a storm, and hurricane sandy is heading our way as i write. i managed to make it home, but only just – i got the last seat on a flight departing san francisco at 6:15 am yesterday morning, and arrived in new york a mere three hours before the total system-wide shutdown of the subway and the rest of regional transport. as lovely as it would have been to be stuck in the bay – many of the east coast residents attending the wedding now find themselves on extended vacations – i didn’t want kathryn to have to ride out the storm alone. her dance center is closed today (at minimum) and given that she’s just finished working twelve days in a row (!!), i wanted to take advantage of some quiet time together. i’m terribly jet-lagged after being on the west coast for only two-plus days, but i’m tremendously grateful that i was able to make it safely back to brooklyn.

we’ve yet to experience the worst of the storm, though i’ve heard already heard reports of flooding in nearby red hook and lower manhattan. our 150-year-old brownstone is at the top of a hill – we’re surrounded by potential evacuation areas but our neighborhood should be fine. we’re as ready as we can be, with candles and headlamps, plenty of water set aside and lots of food requiring minimal preparation. i’ll do my best to keep you all updated as the storm crawls across the northeast – of course, my laptop use will be limited if we lose power, and that looks to be a likely scenario. i hope those of you out here with us on the eastern seaboard stay safe and dry – if you do end up in trouble, our fortress of a house is absolutely available as refuge. i think a candle-lit evening of apples to apples sounds pretty good to me!

Posted in events, love, travel, weather | Comments Off

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 »

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 »

the power of love.

Monday, August 20th, 2012

i’m not embarrassed to say that the power of love by huey lewis (and, of course, the news) used to be one of my favorites. i even thought i could pull it off as at karaoke – it was the first time i’d gone out on the town after my first surgery back in 2008, and it turns out i wasn’t quite ready to be on stage. i traded my crutches for a mic stand, and, as it turns out, the mic stand provided far less support than i needed. about a third of the way through the song, i tried to pull off a little rock star lean move and ended up collapsing on the monitors at my feet. it wasn’t very fun.

i don’t like that song anymore.

still: that doesn’t make love any less powerful.

these past two weeks on the road have reminded me so dramatically of the true and real power of love. i have about a thousand pictures and a dozen clips of video to sort through once i’m home, but even that mess of media won’t effectively convey the wondrous love that i’ve been lucky enough to witness on this trip. so i thought i would put together a nice long post to attempt to explain how lucky i’ve been to be a part of so much incredible, deep, and meaningful love.

it’s been painful and frustrating to participate in such magical times without my special lady – she’s been in brooklyn while i’ve been touring the west coast – but we’ve maxed out our credit and someone has to be the breadwinner. i miss her terribly. my friend ameet and i are on the same redeye flight back to JFK tonight – we land at 6 am, blech – so i’ll at least be able to give her a kiss before she heads off to work. then i’ll be home for five days before i leave. again. this time i’ll be close, just up in the catskills – i’m taking over shuttle duties to get my neighbor’s kids to summer camp. once they’re on the bus, i’ll have eight hours of uninterrupted stillness in the woods, so i’m loading up their car with as many canvases as i can fit and/or afford. *ps – if you’ve been thinking about commissioning a painting, this week would be a great time to start that conversation! i’ll be painting all through next week.

it’s been nice to take a break from posting, but now i have a lot of catching up to do. for those of you in the mood to read, here’s a recap of my travels as they wind down and i prepare to hit the ground running back in new york.

first it was back home to the bay. and yes, it still feels like home, or a home at least, though more than two years have passed since i last felt those soft breezes and marveled at the lush tropical gardens i took for granted all those years. my first morning in san francisco i woke to the best alarm there is: a smiling baby. the lovely and talented annie bacon is a new(ish) mother, and this was my first time getting to cradle her deliciously adorable child. his smile contains multitudes. i changed his diaper. it was great.

i saw my godparents and my godsiblings. i spent a night sleeping next door to the preschool where i used to work, and i basked in the steady flow of memories of snack time and fingerpainting and reading stories and playing in the sandbox. i made cocktails (not for the preschoolers). i made milkshakes (ditto). there was much rejoicing. my godparents laila and dan live with their families in a wonderful sort of semi-communal compound filled with people who watched me grow up, and it was lovely to spend an evening with their community. evenings like that one make me yearn for the bay.

of course, the traffic going back and forth to visit my grandmother made me remember that it’s not all glowing poppies and patio parties. the bay has long outgrown its infrastructure, and though obviously new york is not a quiet and calm city, i still remember the oakland and berkeley of my childhood. it’s not the same.

my grandmother, though, has barely changed at all, and has managed the transition into assisted living with grace and courage. of course there was lots of initial resistance, but she’s happy in her new living situation, and i can see why. the kensington is a vibrant community of seniors with a staff that appears to genuinely care for their residents. i happened to glance at a schedule on my way out the door and noticed that i was going to miss wii bowling and a communal viewing of jeopardy. that sounds awfully good to me, and when you throw in the bridge games and the unlimited ice cream, man, i might want to retire there myself. four scoops of strawberry with lunch? yes please.

my grandmother moved away from her family after she married my grandfather. when he passed away in 2010, it was the first time she’d ever lived alone. you can imagine the incredible challenge that would present at any age, much less for someone in her eighties. but now she’s thriving, even as her body and mind slowly fail her. she has multiple boyfriends. she dances the boogie every day. and she does everything she can to support me. i showed her my paintings and we talked about art and the wonders of finding new ways to see the world, no matter your age. she’s a special lady, and i hate being so far away from her. i know not all of her grandchildren have an easy relationship with her – she can get a bit judgy – but that doesn’t make it any less wonderful to be the recipient of her total and complete love.

and then, more love: a wedding in monte rio, an adorable little town that sits on a bend in the russian river. my friends brett and cindi were married surrounded by their friends and family just a few steps from the quiet babble of the passing river. of course, we couldn’t hear the gurgle over the crazed man playing drums (badly) and blasting his stereo out his open windows to deliberately attempt to ruin the wedding – something about weddings behind his house needing permits or something, and our repeated pleadings to stop fell on deaf and seemingly meth-riddled ears. but his insane rage wasn’t enough to spoil a perfect weekend of dips in the river, hot tubs at night, and conversations with many people whom i love deeply. selfishly, their wedding was a wonderful way to deepen my friendships with tons of folks i rarely get to see but care for immensely. we had a campfire and played beautiful music. we talked so late into the night that i lost my voice. one hotel was filled entirely by my friends with children, and i think the continental breakfast we shared surrounded by smiling babies was my favorite continental breakfast ever. i did my best to ruin our final hours in monte rio by backing a friend’s car into a telephone pole, but they were incredibly understanding, and once i’ve helped to pay their deductible, everything will be fine. still: boo.

from the bay, i made my way to oregon. i know, i’m exhausted just recounting all that i’ve managed to fit into these past two weeks! the first few days i spent with my sister and her husband at their newly purchased home. how exciting is that?!? it’s a beautiful space, with blossoming flowers of all varieties on every side and light streaming through every window. i’m super proud of them for managing to make a home for themselves. i’m also a bit jealous – my four years of cancer have put on hold my own lifelong relationship goals of house and family, and though kathryn and i adore our home in brooklyn, we yearn for a space to truly call our own. jess and andy are totally dedicated to making their home a place of warmth and joy and beauty, and though they’ve only lived there a few short months, it feels so natural for them to be there. i was excited to be the first family member to visit since their move, and i wish my energy hadn’t been so low as to prevent me from being able to help around the house. not that they need it, but i’ve had to just shut down a couple times on the trip, which is always frustrating – i’m right at the outer edge of what i can handle with all this travel, and as wonderful as it’s been, i am utterly exhausted. before a redeye. ugh.

jessie and i had a wonderful day trip to the oregon coast, and the drive to the beach gave us some time to really catch up and work on our adult relationship, which can be rocky sometimes. it’s hard to be present with each other when we’re so far away, and we can drift apart without meaning to – it happens. every time we have a chance to sit down and be present and honest with each other, i’m glad for the opportunity. both my sisters are totally unique individuals and are constantly a gift to me by their simply being a part of my life.

the weather cooperated – as it has nearly this entire trip – and jess and i meandered through small beach towns and walked on the sand and watched kites float through the blue sky and petted dogs and listened to the joyous shrieks of children playing in the waves. there’s something remarkable about looking out at the ocean; the endless horizon represents to me endless possibility, and at a time in my life that is filled with such tremendous potential, it was powerful to just sit quietly, staring at the sea.

and finally, i arrived at my last destination. my college roommate skippy and his new(ish) wife jess (not my sister) were married this weekend, and they invited me to officiate their ceremony. it was a great honor to be asked, and it gave me a chance to meditate deeply on the nature of love in our lives – thus this long, long post. next weekend will be the fifteen year anniversary of all of us meeting at vassar, and nearly all of us (we missed you, josh and sarah!!!) were here to celebrate together. skip and jess bought a house within weeks of jessie and andy, but this is so much more than a house. they moved 45 minutes north of portland and bought a farm! it’s hard to believe that all my friends and even family members are buying houses and raising, making or readying to make babies. the farm is a lovely handful of acres tucked away from the main road, with a true barn filled with miniature lambs and ducks and chickens. they worked tirelessly to prepare the property for the wedding, and the weekend couldn’t have been more perfect. they were married in the field behind their house, in front of a tree with a heart carved into the trunk. both families have lost important loved ones over the years, so there were many tears wept, both in joy and in remembrance. there were more songs around the campfire, another delicious wedding dinner, and tearful stories and toasts shared as we sat together at one very, very long table. i couldn’t be happier for the couple, and they couldn’t be more perfect for each other. they are deeply, truly in love. and that is a powerful thing.

and so, dear readers, to the few of you who’ve stayed with me through these past 2000-plus words (good lord!), thank you for sticking it out. i have to be honest; i don’t want to end this post in the way i must, but i think it’s important that i share this with you. last week i found a suspicious nodule near my bellybutton, just above the scar from my bowel resection. i hoped it was simply an extension of the scar tissue, but it feels just like all the other tumors have felt, and it’s grown rapidly since i found it. skippy’s mom is an ER nurse and i had her take a look – she agreed that it was most likely a recurrence. i’m seeing my oncologist on thursday and will hopefully know more then. regardless of what it may be and what surgeries or treatments i may face, i’m incredibly grateful to have these last few months free of treatment and (mostly) free from worry. given the extent and aggressive nature of my disease, these long breaks are such a gift, especially when they allow me to travel west and see so many and so much, to witness love on such a grand scale and to be a part of that love. even as i end this trip exhausted to the core, there’s something so spectacularly awesome – awesome in its most dramatically full sense, not just some awe, but lots and lots of awe – about being privileged to bear witness to public expressions of love and dedication. it’s a great reminder of how much i care for my own partner, and it makes me all the more grateful that she’s waiting for me at home with open arms and her loving heart.

i used this quote from jonathan safran foer in the service – it seems like an appropriate way to finish up this post. i love you.

I love you also means, I love you more than anyone loves you, or has loved you, or will live you, and also, I love you in a way that no one loves you, or has loved you, or will love you,and also, I love you in a way that I love no one else, and never have loved anyone else, and never will love anyone else.

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big sky country

Saturday, July 14th, 2012

tomorrow morning i’ll rise before the dawn and head to newark for my flight to montana. i’m absolutely thrilled to be heading on another first descents adventure, and i’m incredibly grateful for all who supported the trip or generously donated to this marvelous organization. you can still donate to team groinstrong here, and i wouldn’t say no if anyone feels like contributing to my ungodly expensive plane ticket.

the lazy JP ranch will be our home for the week – it looks like a super swanky spot! i’m only responsible for getting myself to kalispell, and i’d never be able to do something like this without the support of first descents. the ranch house alone rents for $5000 a week. it’s such a privilege to be able to make the trip – glacier national park is a stunning mountainous wonderland. it’s one of my favorite places in the country, and i can’t wait to spend a week exploring it. if you don’t know the area, check out the national park’s website. we’ll be doing a mix of kayaking, rafting and hiking – even just driving on the going-to-the-sun highway is an unforgettable experience. the road seems to float above glittering alpine meadows as it glides past waterfalls, defying gravity as it clutches to the cliffs. it’s literally awesome. there is some serious awe going on.

in the meantime, i’m doing my best to sink into this new cancer-free life. it’s different. there’s not any of the day-to-day urgency. the fear is present but far away. i’m not sorry to see it fade. i have an awful lot of pieces of my life to rearrange, and though i’m taking it step by step, it feels awfully daunting. it seems like i’ve not only lost much of the last four years, but also that my development as a creative and professional being has been stunted by the experience. of course, i’ve grown in other powerful ways and i do my best to recognize the good that has come along with so, so much bad. in a lot of ways, though, i’m starting from scratch, and it’s difficult to know what to do next. i’m trying to take advantage of all the opportunities my survivor status presents, whether it’s another class at the creative center (this time it’s landscape painting), joining gilda’s club (gilda radner’s cancer support organization) or kayaking with first descents. i know that many of you have made sacrifices to support me in these pursuits, and i deeply appreciate it.

i’ll have internet at the lazy JP, so i’ll do my best to keep you all up to date on my adventures. for now, thank you so much to all who have supported me this time and so many times in the past. i owe formal thank yous to so many of you, and i promise i’ll get them to you soon. for now, as usual, i can’t say enough how big a difference your support has made to both me and kathryn. you’ve helped me manage through the most difficult experience in my life, and though it’s not truly over – it will never be truly over – i know i could never have gotten to where i am – energetic, living passionately and without fear, loving truly and deeply – without you.

you’ll all be with me on the river.

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this is what it feels like.

Sunday, June 24th, 2012

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the technical side of good news

Thursday, June 21st, 2012

many of you have already seen that i posted my awesome news on facebook last night. in twelve hours, my comment has received 248 likes and 49 comments. it only proves once again the strength and power of the community surrounding me (& us), and the nature of cancer as so much more than a disease of the individual. Scratch that, 258 likes. that feels good.

i wanted to share with you the crucial passage from my scan results. i think it demonstrates my oncology team’s remarkable ability to translate medical science-y language into something comprehensible.

Findings:

There is a stable 4 mm T1 hyperintense, T2 hypointense structure in segment 2. This appears tubular and likely has no enhancement. Suspicion for a metastatic lesion is low. Liver morphology is normal. Spleen, gallbladder, biliary tree, pancreas, adrenals, and kidneys are unremarkable. There is no free fluid or lymphadenopathy.

There is no free pelvic fluid or lymphadenopathy. The urinary bladder and prostate are grossly unremarkable.

I AM GROSSLY UNREMARKABLE!!! JUST WHAT I ALWAYS WANTED!!!!

yesterday was an all-out success of a day for other reasons. i’d signed up for first descents again this year - they take young adult cancer survivors on free extreme sporting trips, and i kayaked outside of vail with them two years ago. i was planning on spending a week kayaking in glacier national park. but then my impending surgery forced me to cancel. bummer. then yesterday morning first descents emailed out saying that there were a handful of sessions that had open slots. it turns out they had space in their glacier program in mid-july – and i’m going! glacier is one of the most dramatically beautiful parts of the country, and i can’t wait to spend a week there. it was just the cherry on top of my cancer-free sundae.

i think a cancer sundae would not taste very good. kind of a sundae bloody sundae. HA.

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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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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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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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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.

 

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the greatest gratitude.

Saturday, March 3rd, 2012

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

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

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

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

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

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

and now for the good.

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

and finally, on to your generosity.

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

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

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

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

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

and i plan on winning this staring contest.

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the only good part of the emergency room is…

Friday, March 2nd, 2012

well, other than the ice chips, of course. i have a small handful of that liquid gold left in the freezer – in a small plastic bag that says DANGER! BIOHAZARD. awesome.

no, the best part about being in emergency room is getting to see my friend kathy. i’m not sure how many of you read the comments, but kathy posted this yesterday:

Once again, I heard a familiar voice behind me calling my name “Hi Kathy, I’m back again, twice in one week. ” I recall that visit several years ago when you were in bed #5 and you gave me the bracelet that I have not taken off for one minute since you gave it to me.
I think of you often, I hope you are feeling better, Lots of hugs, Kathy

honestly, that makes me tear up a bit. kathy was a huge help on wednesday when the ER was massively overcrowded, and i ended up in great discomfort in a chair. i wasn’t impressed with my resident’s bedside (or chairside) manner and was feeling forgotten. but once i managed to catch kathy’s attention, i was in a bed and covered with warm blankets within minutes. it’s gotten to the point where i’m actually a little sad when i end up in the ER and she’s not around. even among my closest friends, there are only a handful of people who can say they’ve never taken their bracelet off. thanks for being so wonderful, kathy.

i have lots more to share with you, as it’s been quite the week, but it only feels right to dedicate this post solely to kathy, and to the remarkable nursing staff at NYU. no matter my ailment, NYU nurses have taken such excellent care of me, especially the nurses of the oncology wing on the 16th floor. nurses are your doctor, your therapist and your mother all at once, and they could never receive enough praise (or wages) to properly acknowledge all that they do. i’ve seen more than one patient be absolutely abusive to the nursing staff, and i want to get out of bed and punch them in whatever area is ailing them. i’ve seen it get so bad that mediation teams come to try and stop the patient from making the nurses cry. for reals.

kathy is a very special nurse, but she is not alone.

so next time you’re in the hospital, be sure to treat your nurses well. they deserve it.

 

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home safe and slightly unsound

Tuesday, February 28th, 2012

that was not my favorite night ever. what ups and downs! just as i’m feeling strong and brave and confident and happy, my health tries to steal it all away. i can barely remember posting last night through the bleary haze of IV dilaudid, so i’m re-reading to see what i should cover today. i was about to say “this morning” – even though it’s 3 pm, it feels like morning after heading to bed at 7 am.

so here’s the latest. after the clean CT scan last night, dr. pavlick (just as a reminder, my oncologist) decided that an MRI wasn’t necessary. which is great, because i’ve got a migraine from lack of sleep today, and having endured MRIs with migraines before, it’s not an experience i would wish on my worst enemy. well, maybe i would wish it on my worst enemy. it’s awful.

the going theory for my dramatic, precipitous decline is a rare side effect of zyprexa, the atypical anti-psychotic drug i started as an attempt to curb my insomnia. it’s possible that i developed neuroleptic malignant syndrome, a very rare and very dangerous disorder caused by adverse reactions to that particular class of drugs. though i didn’t have the typical fevers, it would explain the severe muscle pain, stiffness, tingling and increased confusion and delirium.

and honestly, as scary as its name may be, the disorder is better than some of the alternatives that the side effects pointed to; namely, meningitis and brain metastases. given the good outlook on scans and positive outcomes with my blood tests, we’re out of the woods on those. so i got that goin’ for me. which is nice. given both my forever-compromised immune system and the breakneck speed of melanoma on the move, neither scenario would be out of the question. thus my calling the amberlance. ha! spellcheck doesn’t like my alternate spelling of ambulance. word added to dictionary!

i’ve got to head to the pharmacy to get a script filled. thank you for reading, for keeping me in your thoughts and prayers, and for all your support. the donations continue to pour in from across the country, and it was such a gift to head to the ER knowing that any charges i incurred would disappear given your generosity. if you’re able to help out with the costs of my continued care, please paypal or chase quickpay to jonah.ei@gmail.com, or email me for our mailing address. even a dollar or two here and there can communally make a huge difference for me, and my psyche, and for kathryn as well. so thank you in advance for whatever you can give.

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Posted in complaining, gifts, gratitude, hospital visits, language, love, melanoma, migraines, skin cancer, videos | 3 Comments »

some people wake up on monday mornings…

Monday, February 27th, 2012

some people wake up on monday mornings
barring maelstroms and red flare warnings
with no explosions and no surprises
perform a series of exercises

yes, it’s more andrew bird, this time from a song called simple x. and it’s so very appropriate. it being monday morning already, as my insomnia continues unabated.

the concert was amazing. meeting the band was the icing on the cake (see below for photographic evidence). his new album, break it yourself, is breathtaking, and may even surpass armchair apocrypha as his best ever. and i say that after a single listen live. he even has a song, “the near-death-experience experience” that’s sort of about me. kinda.

dance like you’re a cancer survivor
like you’re happy to just be alive 

the bell house has played host to so many incredible, indelible moments in our lives. derby parties, already-married marriage proposals, karaoke kraziness, rowdy disney sing-a-longs and unforgettable concerts. though i haven’t been pounding the mats (that means bartending) in a while, i sometimes forget what an remarkable privilege it is to be a part of something so special. *this* is why i moved to new york city.

i know many of you don’t check groinstrong regularly, and especially not on the weekends. and that’s just fine! i almost never post over the weekend. but since monday morning is upon us (and you sure look fine), i thought i would reiterate what i expressed on saturday.

lemme tell ya, time tough.

earlier this month, i received a year’s worth of bills from NYU in a single mailing. as far as i understand it, when you see a doctor that isn’t in private practice, they’re actually leasing space from the hospital. and as you might imagine, their rent is astronomical. so part of that expense is transferred to the patient as a “facility charge.” yeah, that’s totally separate from the visit co-pay. my insurance helps with the fees, but it doesn’t pay for all of it. i usually get the facility charges every few months, and i thought maybe being in a clinical trial had exempted me, since i hadn’t seen that particular kind of bill in a long time.

no such luck. on saturday morning, i sat down to the stack of bills and realized that i just couldn’t pull this one off on my own, or even with kathryn’s help. and by may, both our respective parents will have helped to finance two weddings. each. as in four weddings and (thankfully) no funerals. so it doesn’t feel right to ask them, at least for the moment. they have their own battles to fight, and win, and they must persevere, and be anklestrong.

so that is why, on saturday, i decided to ask for help. from all of you.

i wish that i wasn’t in a place where i have to ask, but over these past four years (!!!) since my diagnosis, i’ve learned the importance of swallowing my significant pride and asking for help when it is necessary. it makes it easier to ask knowing how much you all care. and within 12 hours of my rare saturday morning post, your donations exceeded $500. and the best part is, they’re just a few dollars here and there. a five spot. an andrew jackson or two. but my goodness do they add up quickly. they’ve continued to come in from across the country, and i figure by the end of this week, that, with your generous support, i’ll have all my medical bills paid off, and a bit to hold onto (i should probably just give it to kathryn) for when the next fat envelope arrives from the cancer center. any gift, small or large, makes a big difference to me. i exist right at the margins of bankruptcy, and if kathryn’s job wasn’t so stable, and if we didn’t have such a wonderful, remarkable community that supports and sustains us in so many ways, it’s entirely possible we’d be living in a basement on summit avenue. as in my parents’ basement.

so: thank you for keeping me and my wife out of my parents’ basement.

your support means the world to us both.

the easiest way to send your gift is either paypal or chase quickpay to jonah.ei@gmail.com. you can also send me snail mail (always appreciated, even without checks inside!) to 287 sackett street / brooklyn, ny / 11231.


thank you so much in advance for whatever support you’re able to provide. please accept our deepest gratitude for all the gifts you share.

also: this is my song, for the asking:

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