it’s the moment that you were probably not waiting for! i’ve finally managed to upload our episode of the newlywed game. since they didn’t give us a copy, i had to point a camera at a TV while the show played. not the best quality, but it’s better than nothing. you can click here to view it on youtube and go to fullscreen mode. enjoy!
Archive for the ‘videos’ Category
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.
after you turn 21, each birthday seems to be a reminder that you’re getting old. that you’re slightly less cool. that your best years are behind you. i’m not saying i’d like to be 21 again – god forbid – but it’s the last age that you qualify for some privilege until you turn 65. and i don’t know anyone who gets excited about automatically qualifying for medicare.
cancer has changed my perspective on birthdays. every year is cause for a significant celebration, simply because it is another year that i’ve stolen from death. that chess game in the seventh seal? i’ve been playing that game for four years. and death is playing with 16 queens. the past four years have put me at the brink so many times i’ve lost count. was it the cellulitis that brought on a fever of 106? was it the dual viral and bacterial infections alongside pneumonia? many months after that trauma, one of the oncology nurses who cared for me during that awful time admitted that she didn’t think i would make it through. understandable: i couldn’t speak for three days. or was it when we discovered tumors in my intestines? we were prepared for that to be the beginning of the end, to watch as the disease rumbled its way through my internal organs and into my brain. or was it when tingling sensations repeatedly rippled through my body, alongside numbness, dizzy spells and muscle weakness? i thought i had a brain tumor and was ready to head into brain surgery. i was ready to say goodbye.
like i said: i’ve lost count. but each time i’ve somehow found a way to pin death in the corner and announce a triumphant checkmate.
and now, today i turn 33. an auspicious, palindromatic year. my world feels like its opening up like a lotus flower, with petals representing nearly infinite paths of being – all of them exciting, engaging, and filled with wonder and creative energy. two doctors have ordered paintings (one a recreation of hand in hand) and i met with a new buyer last night. that makes four commissions in as many months since i began my art career. to answer your question: yes, many of my artist friends hate me. no, hate is too strong a word. but i know there are many of you out there who’ve created art for years, decades even, without making a dollar. i know how lucky i am, and i feel incredibly blessed to have this new avenue of expression garner such a positive reaction. how many people, as they turn 33, are starting a brand new hobby that has the potential to be an entirely new career choice and life path?
as much as i despise my cancer – and that is an awful lot – i’m grateful for the ways that the experience has made each day precious, each week a celebration of life, and each year a tremendous accomplishment. few people pat themselves on the back for simply surviving another year. i do so every single day.
thank you all for your kind birthday wishes. i wish you could all come and party with me on saturday! we’re hosting the 2nd annual east coast all-participatory talent show/BBQ/birthday celebration (or 2AECAPTSBBQBC). the lovely, incomparable annie bacon started the tradition out in san francisco many years ago, and i’ve founded an east coast version. we’re accepting submissions via email or video links, so if you’d like to participate, please send in your submission by saturday morning.
and speaking of talents, i’ve finally finished editing/cropping/color fixing/naming all of my pictures from the trip to montana. they’re available on facebook (gallery one and gallery two) and also on picasa for those of you who avoid FB. i’m very pleased with the way they came out, and i managed to cut them down from over 1200 pics to just 400.
one last item before i go out for a birthday lunch with my good friend karl – if you’d like to hear more about first descents, CNN published a story about the organization the day after i returned home. that same day, i received a link to a pilot episode of the show change agent – they filmed the episode during my first FD camp, and i was one of two campers featured in the show. i can’t recommend the episode heartily enough, and not only because i come across as kind of a badass. it reveals the nature of first descents better than any of my pictures, and the stories they share are powerful and moving. there’s a feature-length documentary about FD that’s garnering significant attention as it plays through the festival circuit, so the producers are waiting until it’s in wide release to broadcast the TV show. it’s embedded below and runs just under 30 minutes. i hope you’ll take the time to watch it!
two years ago, when i joined first descents on a kayaking trip in colorado, i had a great time – but i didn’t feel the life-changing force that some participants did, and i returned home not feeling especially challenged by the level of rapids we encountered on the river.
this time, it was different.
i’m still sorting through the 1,000-plus pictures from the week (a number that will drop significantly, but still). the people – both campers and counselors – were generous, hilarious, and real. after just a week, i count many of the participants among my dearest and most-loved friends. meeting people who’ve shared so much of the terrible, soul-sucking experience of living with cancer provided an opportunity to stop feeling alone in my struggle (not that the support you’ve all given me has left me feeling alone – far from it – but there’s a common bond between survivors that’s impossible to recreate). making new friends can create space to remind ourselves of who we truly are – when we present ourselves to newly made acquaintances, we decide for ourselves how we want the world to see us, and it’s a great reality check to see how you’ve changed and who you are this time.
the river (the flathead) was a dramatic step up from colorado, and i spent an awful lot of time out of the kayak, swimming in the ice-cold glacial melt and trying (aka failing) to avoid the many underwater rocks. rocks that were hard. rocks that left bruises so deep they have yet to appear on my hips. and on my back. and on my butt. and on my shoulders. and on my hands. but i learned far more from the rapids i failed to navigate successfully than the ones i managed. it’s not like i swam more than other kayakers – in fact, over the course of the week, every single participant exited their kayak more than once. the last full day on the river saw us through a number of class III rapids (class VI being fatal) and i did manage to make it through most of them unscathed. i left the river feeling like i’d learned a great deal about how to work with – and not against- the flow of the river. i’ve always appreciated the ways that a kayak allows you to interact so intimately with water, but this past week, with the excellent guidance from our guides, i came to understand the ways of the river in a new light.
it was a beautiful week. it was a gloriously beautiful week. the river ran along the western edge of glacier national park, and we couldn’t have asked for a more gorgeous stretch of river. the weather was perfect – warm and sunny on the river, cool and calm in the evenings. the soft grass in the yard of our lodge made for a great diving surface during our endless hours of volleyball. i think i’m as sore from bumping and spiking as i am from my studies of the variety of underwater rock formations. the soreness and exhaustion is elating. this time i’ve inflicted the pain on myself, rather than it being a result of treatment or surgical intervention. i’ve had to limit so many of my choices over the past four years, and to feel in control of my life once again is a privilege i once felt impossible to achieve.
thanks again to everyone who contributed to my travel costs, and to those who made donations to first descents as part of team groinstrong. we didn’t reach our goal of $1000, but every little bit helps. i’m so incredibly grateful for your supporting this marvelous experience. be prepared for another round of fundraising for FD when my next adventure comes around in 2013!
while i was in montana, i received an email from one of the communications staffers at cancercare. last fall kathryn and i recorded interviews about our experience with the organization – you all know by now how essential they’ve been to me. since i’m mid-process with my pictures from the trip, i thought you might enjoy the video from the interview.
many of you have already seen that i posted my awesome news on facebook last night. in twelve hours, my comment has received 248 likes and 49 comments. it only proves once again the strength and power of the community surrounding me (& us), and the nature of cancer as so much more than a disease of the individual. Scratch that, 258 likes. that feels good.
i wanted to share with you the crucial passage from my scan results. i think it demonstrates my oncology team’s remarkable ability to translate medical science-y language into something comprehensible.
There is a stable 4 mm T1 hyperintense, T2 hypointense structure in segment 2. This appears tubular and likely has no enhancement. Suspicion for a metastatic lesion is low. Liver morphology is normal. Spleen, gallbladder, biliary tree, pancreas, adrenals, and kidneys are unremarkable. There is no free fluid or lymphadenopathy.
There is no free pelvic fluid or lymphadenopathy. The urinary bladder and prostate are grossly unremarkable.
I AM GROSSLY UNREMARKABLE!!! JUST WHAT I ALWAYS WANTED!!!!
yesterday was an all-out success of a day for other reasons. i’d signed up for first descents again this year - they take young adult cancer survivors on free extreme sporting trips, and i kayaked outside of vail with them two years ago. i was planning on spending a week kayaking in glacier national park. but then my impending surgery forced me to cancel. bummer. then yesterday morning first descents emailed out saying that there were a handful of sessions that had open slots. it turns out they had space in their glacier program in mid-july – and i’m going! glacier is one of the most dramatically beautiful parts of the country, and i can’t wait to spend a week there. it was just the cherry on top of my cancer-free sundae.
i think a cancer sundae would not taste very good. kind of a sundae bloody sundae. HA.
so remember how i sold my 1971 guild starfire hollow-body bass to alan hampton, the bass player for andrew bird? i told you about it a couple weeks back.
well guess what? she’s all souped up and has joined the band on tour! she made her televised debut on the jimmy fallon show tuesday evening. man she looks and sounds great. i’m so glad she has a better home – i would guess she was feeling bored just hanging on my wall.
i just can’t resist sharing more andrew bird. did i happen to mention that i sold my beautiful, battered bass guitar to his bassist? well i did. obviously andrew bird is a remarkable and uniquely skilled artist, but his new bass player/backing vocalist is supremely talented as well. i can’t imagine finding a more appropriate home for an instrument that’s even older than me. how far it has come since i found it in my parents’ basement!
the band was on the colbert report last night, and their performance of a second song was exclusive to the colbert nation site. the track is one of my favorites from the new album and they absolutely shred this gorgeous, hypnotic, congolese-influenced composition. as much as you can shred while whistling and playing the violin and glockenspiel.
that was not my favorite night ever. what ups and downs! just as i’m feeling strong and brave and confident and happy, my health tries to steal it all away. i can barely remember posting last night through the bleary haze of IV dilaudid, so i’m re-reading to see what i should cover today. i was about to say “this morning” – even though it’s 3 pm, it feels like morning after heading to bed at 7 am.
so here’s the latest. after the clean CT scan last night, dr. pavlick (just as a reminder, my oncologist) decided that an MRI wasn’t necessary. which is great, because i’ve got a migraine from lack of sleep today, and having endured MRIs with migraines before, it’s not an experience i would wish on my worst enemy. well, maybe i would wish it on my worst enemy. it’s awful.
the going theory for my dramatic, precipitous decline is a rare side effect of zyprexa, the atypical anti-psychotic drug i started as an attempt to curb my insomnia. it’s possible that i developed neuroleptic malignant syndrome, a very rare and very dangerous disorder caused by adverse reactions to that particular class of drugs. though i didn’t have the typical fevers, it would explain the severe muscle pain, stiffness, tingling and increased confusion and delirium.
and honestly, as scary as its name may be, the disorder is better than some of the alternatives that the side effects pointed to; namely, meningitis and brain metastases. given the good outlook on scans and positive outcomes with my blood tests, we’re out of the woods on those. so i got that goin’ for me. which is nice. given both my forever-compromised immune system and the breakneck speed of melanoma on the move, neither scenario would be out of the question. thus my calling the amberlance. ha! spellcheck doesn’t like my alternate spelling of ambulance. word added to dictionary!
i’ve got to head to the pharmacy to get a script filled. thank you for reading, for keeping me in your thoughts and prayers, and for all your support. the donations continue to pour in from across the country, and it was such a gift to head to the ER knowing that any charges i incurred would disappear given your generosity. if you’re able to help out with the costs of my continued care, please paypal or chase quickpay to firstname.lastname@example.org, or email me for our mailing address. even a dollar or two here and there can communally make a huge difference for me, and my psyche, and for kathryn as well. so thank you in advance for whatever you can give.
friends: apologies for the delay in getting you all updated. hmm, you know what? i’m not actually that sorry. i didn’t finish the post because my the pain in my hands has prevented me from extended bouts of typing. imagine that about half of the knuckles on your hands are mildly jammed. that doesn’t feel very good in your imagination, does it? ouch, says your imagination. ouch, say my hands. they’re feeling a bit better, though i’m not sure i’ll make it entirely through this post in one sitting. maybe i should i cut back on my verbosity? not a chance! that means the pain has won. and we can’t have that. although that particular outcome is far too common these days.
i’ve spent the last week complaining vividly, relentlessly, here and elsewhere. the aches and pains. the fatigue. hair loss. the limitations that my health forces me to bear (which, for each of us, are no less real and stifling given the multitudes, billions even, with burdens far greater than our own). but let’s be honest: that’s nothing new. why do you think i started groinstrong in the first place? sure, it’s provided me with an effective way to keep people updated while avoiding a stream of emails and text messages and a phone tree. but i’ve been just as grateful for the ways it gives me a cathartic release. it’s a public forum for my complaining, and luckily, you, the reader, are allowed to skip to the end or disregard entirely at your leisure. and we continue avoiding the real-life helplessness, or awkwardness, or frustration, or outright anger, that can come when one is face-to-face with another’s pain and misery. that sounds terrible, but the truth is that sometimes, a bit of remove from another’s pain and fear and unfiltered emotion is a safe distance and a good choice.
anyways. what was that about limiting my verbosity? ha! i’m just getting started.
so to brass tacks. on top of all my complaints, 2012 thus far has brought a seemingly relentless deluge of days filled with frustration and inanity.
my rejected endoscopy.
my next diagnostic procedure is supposed to be a capsule endoscopy, a.k.a. the camera pill. that magical little machine buzzes through my digestive system with a tiny camera and strobe light, snapping a few thousand pictures on the way down. it’s particularly important for me, given that my tumors live in what’s known as the endoscopy gap – the upper (throat) endoscopic cameras can’t get down that far, nor can the cameras of a colonoscopy make it up. so yeah, it’s pretty important for me. i’ve already done it twice. this time my insurance company decided to deny me coverage, citing a lack of prior evidence and the cost of a potentially unnecessary procedure. um, what? sure, the pill ain’t cheap. but neither is anything else in medicine, including our premiums. luckily, i don’t have to be involved in this particular conversation to assure coverage of the procedure – i’ve been there before, and the most common outcome of said discussion is finding myself on a moebius strip between my insurance provider and the hospital, relaying procedure codes and decisions between two parties that act like feuding friends. “oh yeah?!? well, you tell NYU that we won’t cover it. and that they are ugly.” “united said what?!? those boys have cooties.” they have cooties: for all intents and purposes, sadly not far off the mark.
i’ve been trying to get the endoscopy scheduled since before christmas. it still hasn’t been approved, even after having the necessary consultation with my gastrointestinal specialist, who spent the entirety of the short visit, cursing as he complained about the absurdity and unnecessity of either of us being there. as of this afternoon when i spoke to his staff, they said my insurance was continuing to deny coverage, but that the doctor had called on my behalf on top of simply filing the appropriate paperwork. hopefully the process will move forward soon.
and then there are my missing meds.
upon returning from my christmas visit to nashville, i discovered a notice that my insurance company, “to ease the delivery and reorder process,” had requested that i find a new “specialist” pharmacy through which i would then receive my life-saving cancer medication. i’d already gone through the reorder process (which seemed awfully easy) and had a refill arriving two days later. i called the pharmacy that had initially sent my zelboraf. no, they weren’t considered a “specialist” pharmacy, though they obviously were able to effectively provide me with the drug. so my order, to be filled 48 hours later, was not approved by my insurance. i call the new pharmacy and go through the always too-long registration process – “no, I-S-A-A-C-S. with a hyphen before it. two As. C. S. I-S-A-A-C-S. sure. India Sierra Alpha Alpha Charlie Sierra. Apple Apple Cairo Sam. OH MY GOD I AM GOING TO HURT YOU THROUGH THIS PHONE!!! still, everything is all set up, and just in time.
given the astronomical cost of my medication ($10000 per month, let’s remember!), i only receive 30 days at a time (in case i die, so they don’t have to pay for whatever i didn’t use – seriously!). the 30 day limit holds true for many drugs, but it’s treacherous in this situation, since the order has to come on time or else i run out of medication. now we’re closing in on that point, and i’m starting a relationship with a new pharmacy. after quite a bit of back and forth, the delivery is set up just in time, with an express package and all that. it’s monday. they say the package should arrive tuesday, though it also might arrive wednesday morning, which is when i will take my last on-hand dose. tuesday i set up my housemates and neighbors to be on the lookout for the package, just in case i miss its arrival. all day tuesday: nothing. wednesday morning i call to check in.
“oh yes, thank you for calling. your order was cancelled yesterday.”
“wow. did you think to notify me?”
“it seems that was our mistake.”
OH MY GOD I AM GOING TO HURT YOU THROUGH THIS PHONE!!!
this is not allegra. it is not nexium. it’s not an antibiotic. this is my life-saving cancer medication, and you’ve cancelled my order, without telling me, and you’re not sure when i’ll receive the prescription. how remarkably stupid and baffling.
and the reason for canceling the order? they were going to send me my usual supply, but after my recent dose reduction, a full bottle only provides me with enough pills for 20 days. they’re not allowed to send half a bottle, nor are they allowed to send an extra 10 days with a 40 day supply in two full bottles (because sending more than a 30 day supply would be to imagine the impossible – that i will survive another week and a half). so instead of making the necessary calls and thoughtful administrative decisions, they decided to just cancel the order. i wonder, i so wonder, what would have happened if i hadn’t called? would they ever have called me? would i have simply slipped through the cracks, a cancelled order, stamped and filed and promptly misplaced?
of course, all of these conversations with the new, “more convenient” pharmacy happened to occur while two of my closest friends were visiting from across the country, and we had a single hour for lunch.
and THAT (among much else) is what’s so incredibly painful and infuriating about getting caught up in bureaucratic nonsense. instead of having what might have been a opportunity for a relaxing, fun, restorative conversation with my old friends, i end up frothing at the mouth and apologizing for yelling at an operator who has absolutely no power over the situation.
believe it or not, the worst procedural abandonment is still to come. but it’s late and i have to stop writing.
i just want to live my life. simply doing so is challenging enough without the addition of endless hours on the phone, or falling through loopholes, or becoming a number.
i will not become a number.
my life is my own.