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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

sailing for hope [updated with working link!]

Friday, October 5th, 2012

remember how i suggested you all like caribou coffee’s amy’s blend on facebook so they’d donate to cancercare? well, i’ve got another reason to like cancercare – they’re taking me sailing on a tallship today! i think they’ve invited me to be a media darling, a role i relish with glee. also: sailing on a tallship! i’ll be posting more about the amy’s blend campaign on monday.

in other news, i’ve found a studio space for painting! it’s in gowanus, the next neighborhood over and the home to the gowanus canal, one of the most polluted bodies of water in the country. this stinky superfund site is something to behold – the small is indescribable.  that’s why i like to call it the go-anus. ha! i kill me.

brooklyn art space (formerly known as the brooklyn artists gym) offers membership in a shared open studio for considerably less than the cost of private studios ($200 a month compared to $400 and up). they gave me a tour yesterday and i couldn’t sign up fast enough. they have giant easels, drying racks, and lockers for storage – it’ll be nice to have my painting supplies out of our crowded house. BAS also offers free figure drawing and monthly group critiques. i’m too messy to paint inside so i’ve been using our patio, but recently, i’ve been rained out every day i’ve planned to paint, so having permanent indoor space with big windows and a positive creative environment will help to get me painting much more regularly. i’ve just started another painting class at the creative center – this one focuses on the italian painter giorgio morandi, whose work was unknown to me. his still lifes are delicate, calm and quiet – radically unlike my own frenetic, dense style – and i think the class will expand my repertoire in some interesting ways.

since i’ll soon have a setup to paint more often (and will have to pay for it), i want to reiterate my availability to create art for you, my friendly and dedicated readers. i’m working on a website to be able to share my work – in the meantime, here’s a link to a gallery of my first commissioned work. (i hope the link works this time – please let me know if you have problems visiting the site). at the moment i have a half-dozen commissions in progress! what an amazing journey this has been so far, and it’s one that i’m certain will continue to bring me great joy. please drop me an email and let me know if you’re interested in discussing either a custom work or purchasing something from my growing catalogue.

Posted in advertising, art, cancercare, events, links, painting | Comments Off

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 »

another year.

Thursday, July 26th, 2012

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

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

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

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

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

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

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

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

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

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 »

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 »

(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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my baby is on TV!

Thursday, March 29th, 2012

so remember how i sold my 1971 guild starfire hollow-body bass to alan hampton, the bass player for andrew bird? i told you about it a couple weeks back.

well guess what? she’s all souped up and has joined the band on tour! she made her televised debut on the jimmy fallon show tuesday evening. man she looks and sounds great. i’m so glad she has a better home – i would guess she was feeling bored just hanging on my wall.

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Posted in art, music, rock and/or roll, videos | 1 Comment »

gary’s memorial service

Tuesday, March 20th, 2012

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

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

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

 

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

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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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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The no-nonsense solution to hair loss!

Monday, February 27th, 2012

Courtesy of Ginger Kossow. Elvis knows he can’t compete!

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life without a shield

Tuesday, February 21st, 2012

after a few years of near-constant dependency on pain medication, i can understand why the poppy has led to a war or two. or three.

opiates wrap you in a warm cocoon of hazy days, days that slip away like water through cupped hands. my memories of the last few years are fuzzy at best. though of course there are some (i.e., many) moments that i’d rather forget – the agony of surgical recovery, the clinical hum of radiation, the ignominy of a leaky, swollen body, the depression, anxiety, panic attacks – the years since my diagnosis have also seen times of love and tenderness. most of those lovely times, now that i think about it, are based around kathryn, and in particular our wedding and honeymoon. but let’s not forget the marvelous, spectacular weddings of jessie and andy, doug and janelle, the gatherings of family and friends at the holidays, the singing, dancing, poetry, polar bear swimming. and it’s not just those. love pours in every day, whether via prayer or paypal. and it is so very much appreciated.

especially when i have no shield.

now that the haze has lifted, i find myself left with a battered body, mind and soul, with some serious recovery work to do. and i’m doing my best. i just signed up for a class at the creative center, an arts organization that offers free classes to cancer survivors. i’m going to be studying abstract expressionist painting in the style of joan mitchell! i hear the instructor is 80 years old. rad. my work probably won’t be this good.

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a valentine’s from the D o’ H&HS

Tuesday, February 14th, 2012

dear department of health and human services,

YES! is my answer! i will be your valentine. that’s so sweet of you to ask.

what’s that? it’s not a valentine’s card? it’s a notice that i qualify for medicare?

almost as good!!

wait, “medical insurance” part B costs $100 a month? what sort of safety net is that?

so i can have “hospital insurance” for free. but if i need “medical and other services” such as doctor’s services, diagnostic tests, and outpatient procedures, then i have to pay a monthly premium? wow. that’s pretty harsh. and if i elect to pass on part B for now, you’re going to charge me a penalty – an added 10% for each year i go without part B?

yes, mitt romney, i wouldn’t worry about the very poor either. this safety net seems just fine.

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eventful, to say the least.

Monday, February 13th, 2012

my goodness, what a weekend.

i arrived at the first destination of kathryn’s birthday pub crawl-some/karaoke-tacular only to find her breathless and hopped up on adrenaline. two young, bumbling, desperate criminals had opened the door to our favorite local gastropub strong place, reached into kathryn’s purse and bolted with her billfold. their rustling was just enough to catch the attention of my lovely lady, and, noticing her missing wallet (which i bought her, because it’s covered in hearts and monkeys), she gave chase.

since i arrived after the pursuit, i can only imagine it looked something like this:

seems about right.

in their haste to escape the wrath of the enraged gazelle quickly closing the gap, they dropped the wallet without removing anything. a passerby attempted to grab one of the absconders and managed to come away with her winter coat. it’s all a bit sad, really. they seemed like a young couple, inexperienced and desperate for cash. and now they’re without a nice puffy jacket as we suffer through a few days of real winter. though the jacket is available for pickup at the 76th precinct!

yeah, so basically my wife is a badass. good thing, too. it’s not like i have any money in my wallet! i’ve reached a point that cancer experts call “financial toxicity” – pretty self-explanatory, really. thank god for our new flex spending account and our forthcoming tax rebate! wow, that article is sobering: “your chances of declaring bankruptcy quadruple within 5 years of a cancer diagnosis.” daaaang. good thing i can depend on the kindness of strangers. and friends.

and speaking of friends, i brought my little buddy TJ (tiny jonah) along for the ride. he was a huge hit at karaoke, except with the handful of people who hate puppets. even when they make similar fashion choices.

there are some wonderful pictures from the night taken by our friend tom – black and white can even make karaoke look classy!

man, we even look classy just sitting around. that fine lady in the middle is my uber-talented friend kirsten, who filmed video throughout the evening and is currently editing as we speak. oh man it’s going to be awesome! though the night looks a little different in color.

the weekend also brought sad news (other than whitney houston’s tragic passing). my mom fell and broke her ankle! like real, real bad. foot all mangled and bent the wrong way, three bones broken – she ended up spending her FIRST night in the hospital ever. a testament to the eller constitution that she’s never been hospitalized. it seems so commonplace to me now. but that doesn’t make it any fun. when you’re separated from all that you hold dear, you realize how important it is to be surrounded by what you love – the books, the art, musical instruments, the smells, the comfortable sensations that we call home – in the hospital, they’re all stripped away and traded for an IV drip and 5 am shots of heparin. though at the moment, with a backhoe 50 feet from my window tearing into the old concrete across the street, a quiet hospital bed with a view of the east river sounds a little pleasant.

but not that pleasant. love you mom!

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scantron 50/50

Tuesday, January 17th, 2012

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

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

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

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

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

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

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

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

though in the movie the girlfriend gets him a dog.

i’m still waiting! where’s my puppy?

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Best Christmas present ever!!!!

Sunday, December 25th, 2011

I will call him TJ for Tiny Jonah. What a strikingly handsome puppet! Kathryn knows me so well. Thanks wife!

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