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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 »

Caring in times of great need

Wednesday, October 31st, 2012

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

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

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

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

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

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

haunted

Monday, October 22nd, 2012

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

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

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

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

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

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

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

tomorrow never knows.

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

10,000 likes!

Monday, October 15th, 2012

My Friends – we’re close to halfway through the month of October, and Caribou Coffee has already notched 10,000 new likes on Facebook. That means in just two weeks, your efforts have helped to raise $10,000 for CancerCare.

I wanted to clarify that Facebook users should like Caribou Coffee’s main page here – you can also click on the tab for Amy’s Blend to get more information about Caribou partnering with CancerCare.

At the end of this post I’ve included an informational video about Amy Erickson and the Caribou/CancerCare partnership – I’ve said a lot about my own experience with CancerCare, but there are thousands upon thousands of people who also depend on their services, and the video does an excellent job of sharing some of their stories. I hope you’ll take a moment to watch.

It was Kathryn who first took advantage of the offerings at CancerCare when she joined a caregiver support group. Being a part of the group gave her new perspectives on the burden of being a caregiver and brought her new friends who shared similar sentiments. She’s always been a wonderful, supportive partner, and I would never have made it this far without her – but given how hard she works and how much support I’ve needed at times, it was a great gift for her to find resources at CancerCare that could help her manage. It’s not just the survivors who have something to gain there, and I know Kathryn is a better, stronger person because of CancerCare. And so am I.

I’m so grateful for the opportunity to give back to an organization that has given so much, and I hope that you’ll help in taking advantage of Caribou’s generous offer of support. Please be sure to repost this information and video on Facebook, Twitter and wherever else it could potentially reach a wide audience. Thank you so much!

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Posted in advertising, cancercare, gratitude, links, videos | Comments Off

The Value of CancerCare

Monday, October 8th, 2012

When I was diagnosed with cancer back in 2008, I responded with unyielding optimism. Though I felt – very naturally – fear, and anger, and sadness, I did my very best to keep a sunny outlook. The trouble started when those strong emotions started to get the better of me, and I began having crippling anxiety and panic attacks. Since I’d spent much of my energy (and much of life before the diagnosis) being a most positive person, I hadn’t developed the tools to manage when living with cancer became challenging. And man, was it challenging. I was overwhelmed. I was out of control. I would spend entire days sitting at my desk at work (for I was still attempting – and failing – to manage the responsibilities of a job) staring at my desktop and doing nothing, with a browser window that looked like work at the ready in case my boss came by. I was deeply ashamed of myself, and of the feelings I had.

And in that dark, difficult time, someone was there to help. Someone other than Kathryn, or my family and friends – as they were, of course, always there, but could only do so much. Sarah, my counselor at CancerCare, provided me with the sort of specialized guidance I so desperately needed. She helped me think carefully about who I was and what I required to be happy. I could never have afforded therapy, and our free weekly sessions were a life-changing gift. They eased my burden, and given the heaviness of the weight I carried, it was restorative. I wouldn’t be where I am today without Sarah and the services of CancerCare.

I share this story because it’s just one of the many thousands of such stories from people whose lives have been transformed – and even saved – by CancerCare. No one, not even the strongest among us, is born knowing how to deal with a cancer diagnosis. But CancerCare can help in that fight. They’ve given me a new lease on life – they even led me to The Creative Center, which in turn helped me discover my nascent painting career. Last year alone, CancerCare provided services to over 100,000 people affected by cancer. When I spoke at the CancerCare Gala earlier this year, I pointed out that each person diagnosed with cancer represents an entire community that struggles in unison with the disease. So, in truth, the number of people that CancerCare serves is far more than the individual recipients.

This year, Caribou Coffee is stepping in to help CancerCare support those who have been impacted by breast cancer. Now through Nov. 7 Caribou Coffee will donate $1 to CancerCare for each new LIKE it receives on its Facebook page, which you can visit here. This is a wonderful opportunity to give back to this organization that has given so much to so many. For those of you who aren’t on Facebook, I encourage you to email friends and family and share the details of this offer. If it helps, you can use the text from my post last week. Thank you in advance for helping spread the word about Caribou’s generosity, and I know that together, we can make a real difference in the lives of thousands of cancer survivors.

Posted in advertising, cancercare, gifts, gratitude, links, therapy | 1 Comment »

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

scan results today!

Wednesday, June 20th, 2012

a few years back i posted a tony hoagland poem, “medicine.” i love tony’s poetry and am grateful to brian newhouse for gifting me one of his books. the poet and his mother both have dealt with crippling illness, so he knows from whence he speaks when he says:

Daydreaming comes easy to the ill:
slowed down to the speed of waiting rooms,
you learn to hang suspended in the wallpaper,
to drift among the magazines and plants,
feeling a strange love
for the time that might be killing you.

i’ve grown so accustomed to doctor’s offices, billing agents, the mountains of paperwork, byzantine insurance policies and more that i’m seriously considering volunteering as a patient support agent, sharing my now-expert knowledge of the workings of the administrative maze that comes with being chronically ill. i find it criminally negligent and offensive that the patient is responsible for overseeing significant parts of communication between care providers and insurance companies. the ill have so much more to worry about. on an average week i spend two or so hours on the phone with medical business – managing my appointments, getting approval for necessary medications and crucial care, and of course fighting bills that shouldn’t exist. i’m sure at this point that my credit rating is torn to shreds – i’ve had a number of bills (though none for awhile) go to collections, nearly all through no fault of my own. i talk to a doctor’s billing office and they say everything is fine, ignore the bills, but two months later i’ll get the mail and discover aggressive and condescending demands for payment. then i call the care provider directly and they say oh, i can’t believe that happened. that shouldn’t happen.

damn right it shouldn’t.

but i digress. this afternoon kathryn and i are headed to my oncologist to hear about the findings of my abdominal and pelvic MRIs. i tend to have a good sense of my body and if the cancer is causing problems, but at the moment i’m feeling as healthy as i have in a long time. granted, i have a mild cold, but that’s actually progress – two years ago, a cold would have sent me to the ER. i’m glad i have a cold.

so i’m not especially concerned this time around, though of course my cancer can always surprise me. i’ve previously described fighting melanoma as similar to punching jello. you attack and say, oh look, it’s gone. but then you look closer only to find that, in fact, it’s still there; it just moved around a bit. it’s remarkable, though, that since my diagnosis, treatments for melanoma have made huge leaps in extending lives and even bringing patients back from the brink of death to live long and (mostly) healthy lives. most of those drugs didn’t exist in any usable form when i had my first surgery – ten years ago, i would have been out of options in 2010. i’ve heard stories of people dying within weeks after discovering their advanced melanoma. obviously, i consider myself very, very lucky. and also obviously, i’m incredibly grateful for all of your support through all of this. i can’t say it enough: thank you.

before i sign off, i wanted to share a recap of the cancercare gala last week. i’m still basking in the satisfaction of a job well done and the remarkable response my remarks garnered – i’m meeting next week to discuss potentially working with a documentary team that’s producing a film about the history of cancer. i’ll tell you more about that after the meeting.

my appointment is at 4:30, so check back in the evening for results.

here’s the recap! there’s also a facebook gallery of photos from the evening here.

Annual Spring Gala Raises More Than $520,000 in Support of CancerCare

CancerCare CEO Helen H. Miller welcomes the evening’s guests

More than 320 guests attended CancerCare’s Annual Spring Gala this past Thursday, June 14 at The Mandarin Oriental in New York City. The event raised more than $520,000 in support of our free services for people affected by cancer.

 

Paddles up!

The evening’s festivities included both a silent and live auction featuring exclusive, one-of-a-kind items including “Best of New York City” experiences, exotic luxury getaways, designer merchandise, and gourmet food and wine packages.

Actress and advocate S. Epatha Merkerson

Actress and CancerCare advocate S. Epatha Merkerson was honored with CancerCare’s “Help & Hope” Award, which was presented by Academy Award-winning actress Whoopi Goldberg. Merkerson, best known for her role on the long-running NBC series “Law & Order,” is a longtime advocate for lung cancer research and awareness. Her “Law & Order” character, Lt. Anita Van Buren, notably faced a cervical cancer diagnosis in the drama’s final season, bringing awareness to women coping with the diagnosis.

CancerCare client Jonah Eller-Isaacs

CancerCare client Jonah Eller-Isaacs was also honored during the evening, taking the stage to deliver a moving account of how CancerCare helped him cope with a diagnosis of stage IV melanoma at age 28. Jonah said:

Every time I’ve felt overwhelmed…CancerCare has been there. They’ve done so much more than help me cope – they’ve helped me develop lasting tools to manage the heavy burden of my diagnosis. My counselor, Sarah Kelly, has taught me not only how to deal with my illness, but how to be a better, stronger version of myself.

Learn more about Jonah, and read his speech in its entirety, on Jonah’s blog, GROINSTRONG.

The evening also featured a moving video of three CancerCare clients sharing their stories of how CancerCare helped them cope with their diagnoses:

View a photo gallery from the 2012 Annual Spring Gala on our Facebook page.

CancerCare sincerely thanks all of our supporters and sponsors who helped make this year’s Gala such a success!

Whoopi Goldberg with CancerCare clients Jonah Eller-Isaacs, Paulette Kennedy, and Donna Spano

Posted in amazing, cancercare, clinical trials, complaining, events, gifts, gratitude, images, links, literature, melanoma, philosophizing, poetry, skin cancer | Comments Off

i can eat anything!

Tuesday, May 29th, 2012

i’m singing that to the tune of the reading rainbow theme song. because today my surgeon lifted all dietary restrictions! i’m going to ease into it, but as long as my tummy takes to its new-old diet, i’m planning on going to the new moorish/jewish-style tapas restaurant that just opened in the neighborhood.

the ability to eat fresh fruit and greens is only the tip of the iceberg lettuce of good news today.

first, the surgeon reported that the surgical margins were clean and clear of any melanoma. that’s great, great news, because it means there’s a good chance i’m completely cancer-free. wow, typing those words feels awfully strange. i’m extremely cautious in my optimism, as always, but there’s more reason than usual to be wary.

i’ve kept this news private (shockingly) for a while now, because i wanted to get as much information as i could before sharing. while looking into my hepatic health, an MRI showed a tiny (4 mm) lesion on the surface of my liver. it could be a number of things, and it could be unrelated to my cancer entirely. for now, we’re going to wait and see how it develops. even if the lesion does turn out to be melanoma, it’s not a major concern – treating cancer within the liver is remarkably quick and effective – it’s a single, localized outpatient procedure (radiofrequency ablation) that causes few side effects and little to no damage to the surrounding tissue. if you’re going to deal with cancerous tissue in your organs, your best bet is the liver. even a liver dealing with hepatitis can regenerate and heal itself. but, as i said, we’re not going there yet.

my oncologist is giving me the next month on full break to recover. my intestines are still inflamed from surgery and we want to make sure they’re fully healed before moving forward. also, my surgical site started leaking a bit last week, and cultures taken friday tested positive for enterobacter aerogenes, a bacteria similar to e. coli that lives in the GI tract and is a common hospital-acquired infection. i’m already on permanent antibiotics that are most likely keeping it at bay, but i’m in touch with my infectious diseases doctor and will likely start a course of something tomorrow.

so, great news all around! my dad is in town to help me celebrate, so we’re having a nice dinner (WITH SALAD!!) and heading off to see the avengers. awesome!

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Posted in amazing, links, music, radiation | 12 Comments »

calendar for hospital visits and meal assistance

Friday, May 18th, 2012

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

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

Instructions for CareCalendar scheduling

First, visit my personalized calendar here:

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

For Calendar ID, enter 112717

For Security Code, enter 7864

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

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

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

See you at the hospital!

Posted in events, gifts, gratitude, hospital visits, links, pain | Comments Off

the other side of sunday.

Monday, May 14th, 2012

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

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

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

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

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

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

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

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

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

Thursday, April 5th, 2012

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

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

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

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

a boy can dream, can’t he?

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

extreme possibility.

Wednesday, April 4th, 2012

i’ve done some reading up on yervoy/ipi/ipilimumab, the treatment that i’ll begin on tuesday. you can browse to your heart’s content here, if you like. but be forewarned: it isn’t pretty.

most of the dramatic side effects occur rarely, if at all. still, we’ve got to be prepared for some nastiness. i had a long talk today with a friend and fellow melanoma survivor. his disease has taken a remarkably similar path: mole on the left leg, migrating to the lymph nodes of the left groin, then the right groin, then distant metastases and finally internal organs. he managed to finish three of the four infusions of ipi before ceasing the treatment. also ceasing: any production at all in his adrenal and thyroid glands. ouch. rare side effects – the 1% only matters if you’re in the 1%.

if all goes well, i’ll receive four infusions, three weeks apart. usually the side effects don’t start at all until well into the cycle, and sometimes it can take months before they really get rolling. i’ve had to cancel my planned first descents trip to go kayaking in glacier national park – i was scheduled to arrive a week after my final treatment, and it would be risky to put myself so far out into the countryside at that time. ditto for joining kathryn’s visit to see her friends in zambia. oh, how i would love to return to africa. but if kalispell is too far-flung, then the swamplands of botswana are surely out of the question.

once again, i have to thank all the powers that be for my health insurance: each infusion costs $30,000. $120,000 in total. and then there’s the potential costs of visits and treatments to manage any side effects.

still, it’s worth it. i’d pay even if i didn’t have insurance. and by “me,” i mean “me and you and everyone we know.”

i’ve never faced such a realm of extreme possibility. a full 10% of patients who receive yervoy are completely cured. that’s not a typo. some people have lived for years now post-ipi without showing any signs of their cancer. that would be a remarkable gift.

of course, there’s the other 90%. and within that 90%, many, like my friend, have come out the other side of treatment permanently damaged in life-altering and life-threatening ways. given my hepatitis-C-positive status, we’ll have to vigilantly monitor the long-term effects on my liver. liver failure is a real possibility.

so here i stand, with life, a beautiful life free of cancer on one side, and on the other pain and suffering and death. never before have i faced a treatment that could produce such dramatic conclusions. sure, i’ve seen a couple clinical trials that listed as a possible side effect: “death” – but this feels more real this time, especially given the fragile state of my interior workings. i’ve escaped the pressure by watching cartoons and catching up on fantasy novels and lots of comic books. but it’s hard to go through with the day-to-day when so much hangs in the balance.

as always, i so appreciate all of your support. i’m sorry if i haven’t written some of you back; it’s taken a lot just to keep my chin up and put on a brave face. still, your kind words and your continued donations give me strength. they keep me going in the face of tremendous unknowns and extreme possibility.

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Posted in clinical trials, gratitude, links, loss, melanoma, philosophizing | 5 Comments »

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 »

numbers.

Monday, March 5th, 2012

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

maybe it has to do with numbers.

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

the greatest gratitude.

Saturday, March 3rd, 2012

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

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

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

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

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

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

and now for the good.

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

and finally, on to your generosity.

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

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

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

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

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

and i plan on winning this staring contest.

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

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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dark matter

Saturday, February 25th, 2012

a rare saturday post! i cannot contain my excitement at the fact that andrew bird, one of our absolute favorite artists and kathryn’s choreography muse, is playing a secret show at the bell house tonight. it’s big news, since he’s sold out radio city, the beacon and even carnegie hall. he moved to brooklyn last year and we’ve been waiting to play on our home turf. he has a new album coming out next week, so i’m guessing he wants to try out the new material before his tour. if you don’t know andrew bird, i highly recommend him. he’s a multi-instrumentalist and world champion whistler. start with his album armchair apocrypha. as one youtube commenter puts it so well (disregarding the comma splicing): Hold tight, this is half storylike plot, half science, half philosophy and best of all the most articulate piece of music, this guy is the most interesting personality in the show-biz world able to rhyme every freaking science in his own world to make his music up composing them whistling and playing violin. one of my many favorite songs on the album is called dark matter (here’s an mp3 you can download and here’s an incredible live version from the art institute of chicago that starts with a story about him touching a rembrandt.

but that is not the dark matter i intend to discuss, though it is indeed a lovely song.

no; this is subject matter that is dark.

i’m not totally comfortable doing this. but my medical bills have gotten to a point that kathryn and i can’t quite manage. a few weeks back i unexpectedly received a year’s worth of bills all at once – the pressure from that massive stack led, in part, to my nervous breakdown. due to paperwork errors, our flex spending account has been suspended, which took away my ability to pay it forward and then reimburse the account as needed.

so i’ve come to you, my dear, dear readers, to ask for a bit of help. there are so many of you at this point that even if you each donated $5 to my medical bills, they would disappear, at least for now. i’ve survived these last four years so dependent on the largesse of others, and i’m tired of needing to ask. but my exhaustion at asking doesn’t pay the bills.

the easiest way for you to help is via paypal or chase quickpay – my email is jonah.ei@gmail.com. if you’d like to send something in the mail, please email me and i’ll send you our address.

in advance, thank you from the bottom of my heart.

a noose is loosed around our necks made of DNA
and every day it’s growing tighter no matter what they do or say
and you can shoot right through it with rays of dark matter
just before they kick out the ladder
with rays of dark matter
like something catching fire

do you wonder where the self resides?
is it in your head or between your sides?
and who will be the one who will decide
its true location?

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word whale

Thursday, February 23rd, 2012

i put one of these together a while back, but tagxedo offers a wide range of customization. these are  my most commonly-used words recently on groinstrong, the largest being the most regularly written. jonah and the word whale! click to embiggen.

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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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happy endoscopy day!

Tuesday, December 13th, 2011

it’s almost as exciting as christmas day! except that santa gives you propofol and sticks a camera down your throat and instead of milk and cookies you give him a small piece of your insides so he can run a biopsy. see, it’s really just a small difference.

yeah… not so much. though i almost had myself convinced. maybe it’s just my feeling a little weak with no food or drink and NO COFFEE.

really though, it’s not such a big deal. i’ve had plenty of endoscopies, and the upper is far, far, inestimably far more pleasant than the lower. for those of you who are around my age and have yet to experience the mind- and colon-blowing magic that is a colonoscopy, YOU ARE IN FOR A TREAT. except change “a treat” to “five hours pooping your brains out.”

on that note, i’ve got to head to the hospital.

where they have ice chips!

it IS like christmas!

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