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a much-deserved vacation

Friday, May 17th, 2013

tomorrow at dawn, kathryn and i are headed to new mexico. the timing is perfect. the weather will be perfect. i couldn’t be more excited.

as part of our prize package, bishop’s lodge is providing us with a couples spa treatment, horseback riding, archery lessons and a private tour of the georgia o’keeffe home and museum at ghost ranch. along with trips to bandolier, tent rock city and taos, we’ll have plenty to do. also we’re going to karaoke at cowgirl bbq, because karaoke. obviously.

kathryn is working her tail off (as usual) and atop her usual hectic schedule, she has rehearsals four nights a week for a show opening in june (more on that after vacation). she so desperately needs a break and though we have plenty of activities planned, we’re going to be sure to get lots of time poolside for some serious relaxing.

as for me, i didn’t realize how much i had invested emotionally in my most recent scan. i feel healthy and had convinced myself that nothing was wrong, but i’ve had nasty surprises before. when this week’s scope turned up clear, i felt a great weight lifted, a burden that i didn’t even know was there.

kathryn came home after my procedure with a special surprise, and a wonderfully appropriate gift for the occasion: sunday morning we’re going on a sunrise ride in a hot air balloon! i can’t think of a more perfect way to celebrate my new weightlessness.

as an added bonus, our balloon pilot is a dead ringer for lee scoresby from the golden compass.

lee scoresby!

Posted in amazing, gifts, travel, weather | No Comments »

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 kids are alright

Friday, January 11th, 2013

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

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

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

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

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

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

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

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

fixing a hole

Monday, December 3rd, 2012

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

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

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

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

but it’s left a hole.

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

suddenly, much of that is gone.

so who am i?

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

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

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

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

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

it’s time to fix the hole.

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

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 »

CancerCare makes me feel better

Tuesday, October 23rd, 2012

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

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

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

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

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

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 »

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 »

Caribou Coffee, Amy’s Blend & CancerCare

Monday, October 1st, 2012

Dear Friends,

Many times over the past few years, I’ve talked about CancerCare and the ways this remarkable organization has supported me, my wife Kathryn, and tens of thousands of individuals whose lives are touched by cancer. They’ve been instrumental in helping me and so many others manage the burden of cancer. Now, I’m lucky enough to have the chance to support CancerCare in return, and I’d like to ask for your help.

Every October, Minneapolis-based Caribou Coffee pays tribute to Amy Erickson, an original roastmaster who lost her battle with breast cancer at just 33. 10% of the sales of their annual Amy’s Blend collection (including coffee, tea and merchandise) benefit an organization that helps those impacted by breast cancer.

This year, for the first time, CancerCare will be the recipient of Caribou’s generosity. After I spoke at the CancerCare Gala this past summer, Caribou asked if I would be interested in being involved in their campaign. I’m honored to have the opportunity to lend a hand to an organization that has given me so much.

Throughout the month of October, I’ll be posting here, as well as Facebook and Twitter, to promote Caribou’s fundraising efforts. Beyond the sales of their Amy’s Blend collection, Caribou is offering a like-to-donate promise – for each new “Like” on the Amy’s Blend Facebook page between September 29th and November 7th, Caribou will donate an additional $1 to CancerCare.

This campaign has the potential to raise a significant amount of money for CancerCare. Supporting CancerCare means supporting people who struggle every day with the impact of a cancer diagnosis, people who can easily find themselves with both bank accounts and spiritual reserves emptied. People whose loved ones find themselves grasping for answers. People who need specialized guidance and care. People like me.

I hope you’ll take a moment to post information on this campaign to Facebook and anywhere else that might help. People like me who depend on CancerCare‘s services will thank you.

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Posted in advertising, cancercare, gifts, gratitude, loss, merchandise | 4 Comments »

the power of love.

Monday, August 20th, 2012

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

i don’t like that song anymore.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Posted in amazing, events, gifts, gratitude, loss, love, music, sadness, travel | 4 Comments »

i went to zambia too.

Wednesday, July 11th, 2012

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

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

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

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

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

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

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miles to montana

Thursday, July 5th, 2012

friends: as i’ve mentioned before, given my recently achieved remission, i decided at the last minute to join another expedition with first descents, a marvelous organization that takes young adult cancer survivors on extreme sporting adventures. you may remember that two years ago i spent a week with them outside of vail kayaking on the colorado river – it was a life-affirming trip that taught me so much more than how to roll a kayak. they cover all expenses except for airfare, and my last visit was made possible through generous donations from readers. i know i’ve asked for help quite a bit recently (and have yet to send out formal thank-yous, though they’re in process), but i’d like to ask one more time for your assistance.

i’m supposed to arrive in kalispell montana on the morning of July 15th. which is awfully soon. tickets are not cheap – we’re talking between $800 and $1,000. my initial ask wasn’t so successful, so i thought i would try a different tack.

so rather than financial support (though it is always appreciated), i’m wondering whether any regular air travelers have spare frequent flier miles they’d be willing to donate. i’ll need to fly delta or united, so i think miles from northwest and continental would work as well (though i’m not 100% sure of that). i know some airlines now charge for mile transfers, but the transfer cost is far less than the cost of the ticket, so i can help with that.

first descents is such a wonderful experience, and i’m hoping some generous souls out there are willing to help me take part this year. please email me if you have miles to spare  - jonah dot ei at gmail dot com.

since the trip is my second FD adventure, they’ve asked that i also raise money to support travel scholarships available to first-time attendees. i’ve set up a team groinstrong with a goal of $1,000 – though there’s no minimum needed, i want to help as much as i can. you can donate to our team here.

i know i ask a lot of you. but i also need a lot. the cost of cancer continues to destabilize my finances – though i’m getting a much-needed and much-deserved break, the bills continue to pile up, and our flex spending account for the year is nearly drained. i’m so incredibly grateful for all the support you’ve provided me over the past few years – without it, i would have moved back in with my parents long ago. i hope it’s not too much to ask once again for your help and generosity.

thank you in advance for any support you’re able to provide. regardless of whether you can give now or you’ve given before, or if you’re just a reader who sends prayers from afar, i am eternally grateful for everything that you as a community have given me.

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when the kat’s away…

Wednesday, June 27th, 2012

the mouse gets lonely. kathryn left last night for two weeks in zambia! one of her closest childhood friends lives in lusaka and works for the state department alongside her husband (and rhodesian ridgeback!). i’m sure it’ll be a marvelous adventure! she took a picture of me attached to a popsicle stick (the picture is attached, not me personally) – aka VJ (virtual jonah) – so it’ll seem like i’m there with her.

sometimes i feel like a puppy just waiting for kathryn to come home and play with me. it’s a great gift she gives me that i can live a less structured life, but there are risks inherent in unstructured days, risks that i’ve expressed before.

so to avoid my getting lonely, i’m going to set up the care calendar to schedule some hang time with you all. if you want to see me tonight, i’ll be at (le) poisson rouge in the west village at 8 pm for the free no-drink-minimum comedy night that is john and molly get along. i know, free comedy probably raises some red flags, but seriously it’s crazy funny every time.

some business: in three weeks i’m heading to glacier with first descents. since it’s my second trip with them, they don’t offer travel scholarships, and actually request that participants raise some money to support first time attendees. so: time for another fundraising push!

the ticket plus day-to-day expenses will be around $1000, and i’d like to raise at least that much for the organization. all donations to first descents are tax-deductible, and i can’t say enough about how great first descents really is. i don’t have regular opportunities to get out into the wilderness, and with my suppressed immune system it’s risky for me to be far away from care (thus kathryn’s solo trip to zambia). but with first descents, their staff always includes experienced medical professionals, and i can relax and enjoy the cold waters of the colorado river or the granite peaks in glacier. i’m lucky that i’ve had so much outdoors experience in my life, and many cancer survivors have few chances to forget all the stress and fear that comes with the diagnosis. first descents provides exactly that.

please give whatever you can! i’ve set up a groinstrong fundraising team here, and if you’d like to contribute to my airfare, you can visit my donation page. thank you all in advance for your support!

 

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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 pooped today!

Wednesday, May 23rd, 2012

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

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

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

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

Posted in gifts, gratitude, pain | 5 Comments »

sunday evening update

Sunday, May 20th, 2012

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

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

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

thusly were the floodgates opened.

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

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

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

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

calendar for hospital visits and meal assistance

Friday, May 18th, 2012

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

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

Instructions for CareCalendar scheduling

First, visit my personalized calendar here:

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

For Calendar ID, enter 112717

For Security Code, enter 7864

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

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

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

See you at the hospital!

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

the luxury of knowledge.

Thursday, May 17th, 2012

in twenty four hours or so, i’ll wake up from my surgery. i can’t say i’m looking forward to it. still, it’s a great luxury to have the chance to properly prepare. so many of my recent hospitalizations have come out of nowhere – i spike a high fever and spend five days in the hospital fighting off an infection, or i arrive to the ER with (this actually happened) dual infections of both viral and bacterial nature AND pneumonia. yeah, that was not very fun – although my infectious nature granted me a private room. talk about luxury!

this time is different. i’ve known this surgery was a possibility for years. i have time to make sure all my bills are paid, that nothing will fall through the cracks while i’m out of commission. i’ve been hard at work setting up a custom care calendar, so those who’d like to visit or be involved in post-surgical support can use an online scheduler. i’ve got cookbooks for blended food and people are already sending recipes. people are sending me immersion blenders! (mystery solved: thanks, jess schoen!) also, i have an ipad. all is well.

i’m on way to one last afternoon of bridge before they cut me up, but i’ll get all the information about the support calendar posted tonight. thanks so much for all of your kind words and messages of encouragement. i’ve met a number of young adult cancer survivors who are not only far away from any family but also lack local extended networks of friends. i can’t imagine having to manage the pain and complications and insufferable side effects and financial toxicity without all of you. you are seriously awesome. you are a luxury.

Posted in gifts, gratitude, hospital visits | 6 Comments »

the mystery of the unknown blender…

Wednesday, May 16th, 2012

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

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

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

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

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

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

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

heyo!

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Posted in amazing, gifts, gratitude, images, love, puns | Comments Off

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