the outlier

November 20th, 2013

so.

how do i express my unmitigated joy at another clean scan?

who am i, now that i’m no longer a cancer patient?

my oncologist said we could start using the R word. too soon for the C word.

remission. close enough to a cure, for now.

yesterday was my last appointment with my oncology team. it was bittersweet.

they’ve taken such good care of me at NYU. how do you say thank you to someone who has saved your life? and does so, over and over again, for thousands of people? and of course this same team has to deal with losing their patients, just the same, over and over again.

i made them a painting – many of you have likely seen it on facebook. i’m writing on the go but will post it when i have a chance.

it’s nowhere near enough.

my doc recently went to her weekly melanoma meeting. a researcher complained that their data curve on the GSK1120212 clinical trial was thrown off by a single outlier; someone had survived far beyond the average. the researcher was frustrated that her data wasn’t cooperating.

i am that outlier.

it’s easy to look at my experience and say, yeah, melanoma research has moved forward in dramatic fashion over the last few years. more and more people are surviving their terminal diagnoses. and while that’s true, there are still thousands upon thousands of patients who don’t respond to treatment. melanoma is one of the most aggressive, fast-moving cancers, and though i’ve said it many times, it bears repeating that EIGHT PERCENT of those diagnosed with stage IV melanoma survive as long as i have.

that is an awfully small number.

after my survival and our winning the newlywed game (along with the annual drawing for free tickets to the book of mormon), i should really be playing the lottery.

on top of another round of great news, we talked with my doctor about our chances of having children. you may remember that i banked my sperm before starting treatment – many of you generously helped me pay the continuing rent for space in the freezer. i thought it was highly likely we would need to use the sample, particularly after radiation to my groin and years of intensive systemic treatment.

but we were told that chances are good that we’ll be able to have kids naturally.

amazing.

i’ll still get tested before we start trying – and it might make sense to go through the new (interferon-free) treatment regimen to wipe out my hepatitis C before trying – but it’s miraculous to consider, after all my body has endured and all that kathryn and i (and all of you, really) have gone through, that we can start thinking about our future, and our family.

i say again: amazing.

glory days

November 4th, 2013

halloween might just be my favorite holiday. costumed revelry and candy everywhere – what could be better?

with our wedding two years ago and enduring the wrath of sandy last year, it’s been a long time since we went all out for the holiday.

and this year, man oh man did we go all out.

hit play below to see the madness.

a new home

October 31st, 2013

my apologies for the delay in posting – i’ve gotten used to only the occasional update and i’m sorry for leaving you hanging. i’m feeling much better – i think threatening my insides with the possibility of another colonoscopy was enough to kick whatever stomach issues i was working through. i did manage this week to catch a cold from one of the children i care for, but that’s no big deal and it should pass quickly. it better – we’re hosting a mega-huge halloween party on saturday, so i’m resting up as best i can.

many of you have already heard, but we’re slowly spreading the news – kathryn and i are moving to nashville at the end of the year. it’s a big change and i’ll write more about it when i have more energy. it feels like the right thing to do, for her family and for our future one. i have my six month scan just before thanksgiving, and we’ll meet with my oncologist to discuss the care transfer. luckily vanderbilt has a great cancer center, and they’ve been running some of the same clinical trials that i was in at NYU and tracking patients long-term. i should fit right in. it’s a major transition in so many ways, but thinking about learning the ropes of an entirely new medical infrastructure is scarier than anything this spooky holiday could produce.

i’m sorry again if i made you worry – obviously with the move we’ve had a lot going on.

practicing avoidance

October 1st, 2013

i find it best to not dwell on it.

but the sad fact is, it’s more than likely that i could have avoided the agony of living with cancer the last five-plus years had i gone to the doctor when i first noticed the unusual mole on my thigh.

but i didn’t. because i didn’t have health insurance.

i was incredibly lucky to have started a job just a few months before my diagnosis, and even luckier to work for an organization that treated me with great compassion and understanding as i navigated the early days full of pain and fear.

my benefits started mere days before i went to the doctor. and if i’d waited much longer – even a few weeks – i might not be here today.

it’s easy for a 20something to feel invincible, to ignore repeated pleas from those older (and, i now know too late, wiser) to at least get catastrophic coverage, just in case. before i was diagnosed, my musical instruments were better insured than my own body.

from today, those of you without insurance have six months to apply under the affordable care act. you can check out marketplace details, state by state, at healthcare.gov.

please, please, PLEASE do so.

yes, the expense will seem a burden.

but without insurance, my medical bills total over THREE MILLION DOLLARS.

how’s that for a burden?

i would have been eligible for emergency medicaid, but only after paying out of pocket for the first six months – and those first six months weren’t cheap.

if i’d had that cursed mole removed early, it’s entirely possible:

i wouldn’t have holes all over my body.
i wouldn’t be missing nerves in my legs and shoulder.
i wouldn’t have permanent skin damage from radiation.
i wouldn’t have to deal with chronic lymphedema.
i wouldn’t have been forced to derail my budding career.
i wouldn’t have to endure semi-annual colonoscopies.
i wouldn’t be dependent on pain medication to make it through the day.
i (probably) wouldn’t have torn my ACL.
i (probably) wouldn’t be on anti-depressants and atypical anti-psychotics.

and: i wouldn’t live in constant, oft-crippling fear that my cancer will come back.

speaking of which: for the last three weeks, i’ve been dealing with near-constant nausea and a mild, light-headed wooziness. it’s more than likely nothing, but after three weeks of discomfort i’m meeting with my gastroenterological oncologist (because of course i have one of those) on friday to most likely schedule (yet another) dual endoscopy. i’m not due for a scan until november, and the scans don’t really do the best job examining my fuzzily metabolic innards, so, once again, it’s up the down staircase.

seriously, you guys. get insured.

if republicans are willing to shut down the government to block it, you know it must be worthwhile.

 

samuel johnson

July 26th, 2013

a cucumber should be well sliced, and dressed with pepper and vinegar, and then thrown out, as good for nothing.

though i love a good cucumber (provided it’s thoroughly peeled) i can still appreciate the humor in dr. johnson’s dry wit. but there’s another quote of his that has far deeper resonance for me:

to let friendship die away by negligence and silence is certainly not wise. it is voluntarily to throw away one of the greatest comforts of the weary pilgrimage.

while it’s true that this site doesn’t serve as immediate a purpose as it did once, i can’t believe it’s been over two months since i posted. every day i think that i’d like to post but just never get around to it. part of the story is that i’ve been busy – i’ve finished a website for my paintings (or at least mostly finished) and with school out, i’ve spent much of the summer busy with kids. i’m meeting one shortly this afternoon so i don’t have time to write the epic catch-up that’s now necessary after so much time away.

the bottom line is that i miss this, and i miss you, my dear readers, and i’m sorry for neglecting you. most of you know that it’s my birthday today, so i thought i’d give myself a birthday present by reengaging with all of you, however indirectly. it just so happens that tonight our favorite live band karaoke group is playing in our neighborhood, so we’re meeting friends and will be singing late into the night. which is how i’d like to spend every birthday. or every day. or at least most days.

next week looks pretty open at the moment, so i’m hoping to have more time to start posting regularly again. until then, thanks for checking in.

a much-deserved vacation

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!

superclean!

May 14th, 2013

seriously, you guys. i’ve never seen my bowel looking so pink and healthy. awesome. totally and supremely cancer-free.

and now i desperately need a nap after a long night.

 

clean(-ish)

May 8th, 2013

the scan is clean, with minor reservations. kathryn and i both expressed a deep desire for the answers to be black and white – either i’m totally in the clear, or not. obviously we don’t *want* to deal with a recurrence, but the fuzziness of the answers (and many scans) can be deeply unsettling.

so: my scan overall was very positive, though i have some mildly suspicious bowel inflammation. given all my insides have endured – the countless tiny tumors have left their mark, not to mention the big resection last year – it’s not surprising that they wouldn’t be at 100%. my team and i are mostly confident that the inflammation isn’t anything dangerous, but given my history, it’s important that we take a closer look. some time within the next week i’ll get a dual endoscopy (throat and colon) – it’s old hat for me at this point (i can’t even remember how many colonoscopies i’ve had) – though that doesn’t make the prep process any more pleasant. i’m hoping to get the procedure and biopsies wrapped up before we head to new mexico next weekend (!!!!) – it’d be nice to head out on vacation having a firm idea of what the future holds.

at least as firm as it gets.

six month scan!

May 6th, 2013

wow, it’s been forever. in the past month, i’ve celebrated the 90th birthday of my beloved grandmother linda, had both my sister, sister-in-law and brother-outlaw visit our fair borough, celebrated the kentucky derby and star wars day (may the fourth be with you!) simultaneously – oh, and i’ve also quietly marked the passing of five years since my diagnosis. i’m now officially part of the eight percent of late-stage melanoma patients who survive five years. that bears repeating: eight. percent. though treatment for melanoma has seen a paradigm shift since i was diagnosed, long-term survival studies have yet to catch up. so, yeah, i’m feeling pretty lucky.

but i’ve also lost friends (arijit especially), and had a ton – far too many – friends who’ve approached me for resources to deal with the diagnosis of a loved one. booo for cancer. boo, i say.

i have so much to share, but i have dinner to make – for now, i just wanted to let you all know that tomorrow i’ll get the results of my six month scan. i’m not especially concerned, but it’s always a bit of a scary time. i’ll be sure to take a moment to fill you all in as soon as i hear from my oncologist. fingers crossed!

let’s play the newlywed game!

March 25th, 2013

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!

seventh new york-iversary

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

oh death

March 7th, 2013

ralph stanley’s high and lonesome sound is in my head, not playing in my ears but reverberating in my soul. there are few voices that can capture pain and heartbreak and ecstasy and joy the way that his does.

one of the great privileges of a cancer diagnosis is immediate and permanent membership into an elite group of remarkable individuals: the survivors. i’ve met so many incredible folks along this journey – and then i’ve watched them die. witnessing a friend wither away is pain beyond pain. when disease begins its inexorable march, there are no words of comfort, no inspirational kittens hanging from branches, no wonder drugs or master cleanses or raw food diets or [insert magical unlikely cure here] that will stop the inevitable. granted, life itself inevitably leads to death, but in order to go about our daily lives, to make and achieve our goals, we have to fool ourselves a bit.

tell ourselves that our lives are huge and wondrous. which they are, of course.

but they are finite.

terminal illness breaks down that fallacy. it places our mortality in our hands and walks away, leaving us to stagger under the weight of our own fragility, our temporal nature, the uninfinity that is our existence.

and yet.

and yet those who face the end-times are still with us. they are not gone, though their corporeal presence may crumble and wash away like a sandcastle at high tide. when my treatment finally took my hair, i could watch my body quite literally going down the drain. bezoars of loss.

and yet, how blessed i am to have come through the last five years relatively unscathed – though it’s been tortuous, i have all my limbs, all my senses and (most of) my hair. i’m met plenty of survivors who lost far, far more.

i’ve just gotten the news that another friend, a survivor and a brave, courageous man, has run out of options to treat his disease and has moved to home hospice. we met some time back when he was visiting new york, and his bright spirit was visible from space. we talked shop, compared scars, shared war stories. we gloried in our luck to each have partners who loved and cared for us even as we leaked unspeakable fluids onto them and asked them to spend their weekends at the hospital in uncomfortable chairs at our bedsides and filled their lives with worry and poverty and pain. we agreed we were lucky.

but sometimes, luck runs out.

my friend, i think today of that sunny day in the west village when we met. i imagine your spirit soaring, even now, over the west village, joining the pigeons in the fountain, climbing to the top of the arch in washington square, watching over the winter-weary, the dealers of smack, the ever-expanding collegial margins, the brave and battered homeless, the red tails in love, the denuded trees with their hidden promise of spring. of green. of life.

tap here to begin writing

March 5th, 2013

that message is in the empty box when i start a new post. i like to think of it as a place in my brain (or, alternatively, my bellybutton, or groin, or shoulder monster) that i tap to begin writing.

obviously, i haven’t tapped into that side of me much recently.

it’s not my only creative pursuit that’s fallen by the wayside. i’ve taken a break from painting since i’ve moved my studio back home – with our transition to the first floor of our house, we now have a whole floor of our marvelous brownstone to ourselves, so the extra room is her arts & crafting station and my painting studio. we spent much of sunday moving the pieces into place and i’d love to be painting right now… but first i have to go to the dentist.

belllllllleccchhh. i know i have at least one cavity. at least i’m finally going to a real dentist – back in my pre-insurance days, i used to go to a dentistry college for free cleanings. the students would move so slowly that after two hours, only half of my teeth would be clean and i’d have to come back later to finish the job. you know how distracting it is to run your tongue along cleaned teeth? it feels great but it takes some getting used to, right? it was so strange to have just the bottom row, or only the right side of my mouth clean. it’ll be nice to have a pro at work again.

i’m finally, *finally* free of the morphine, and i couldn’t be happier – but my lord, it was a horrendous couple weeks. getting the drug out of my system took far longer than i ever imagined it could. i know that the half-life of the drug is most likely far less than it took for me to process, but i found that the medication was propping up the inner workings of my much-maligned gastrointestinal tract (or as i like to call it, my semi-colon), so i’ve had quite a bit of equalizing to work through. there were days where it felt like i was prepping for a colonoscopy – it would have been risky leaving the house.

i’m glad it’s over. so, so glad.

after the dentist, i’m going to my neighbor’s house to record our episode of the newlywed game – for those of you who didn’t catch it, i’ll get it online as soon as i can! kat and i are getting SO excited for our trip to santa fe – we’ll be there may 18-24. may in new mexico? yes please!!!

moving forward, withdrawing back

February 18th, 2013

hello, friends. i’ve missed you. it’s a remarkable testament to how greatly my health has improved that my three month check-up with my oncologist last week was so “grossly unremarkable” that i didn’t even take the time to post, or even chat about it with my folks. my six month scan will be in may – that’ll be a big one and won’t go undocumented.

and it’s not the only news i’ve failed to mention. i’ve missed a whole mess of opportunities to celebrate the ones i love these past few weeks. my sister, my mom, my late grandfather, my loving wife (not to mention my uncle, the spectacular ms. bacon and more) – all had birthdays, and each deserved their own post as to their extraordinariness. it’s impossible to measure the impact of these aquarians in my life. as a self-absorbed leo, i’ve found myself from day one depending on a bevy of aquarii (aquariuses?) to keep me grounded, honest and in check. they tell me the things i know deep down but am too proud to truly admit to myself. without their guidance, i would be half the man i am today (and obviously re: my mom, i would be zero percent of anything). yes, i am lucky to be alive – though this path of negotiating my illness is one i never would have chosen, as i’ve explained many times, the greatest gift it has given me is the ability to truly and deeply acknowledge and understand how lucky i am that i am joined in life by so many strong, remarkable people. my apologies for the mass, “i love you all” message – it’s the best i can do for the moment.

title, part one: moving forward. kathryn and i have moved downstairs in our shared house. you would think (read: *i* thought) just picking everything up and carrying it downstairs wouldn’t be such an arduous task, but you (i) would be wrong. we also painted, which, due to the new (new to me anyhow) technology of self-priming paint (so awesome!) and some helping hands from friends, the full-spectrum gray (“cosmopolitan”) and the “adobe orange” accent wall went up easily. two or so months ago, i began twice(-ish) weekly personal training sessions with my dear friend captain quinn – thank the good lord i had a few weeks worth of sessions under my belt – if i’d tried to move all our (many) belongings even six months ago, it would have crippled me for days. it’s always a bit of an obstacle course, negotiating communal living, especially now, as a married couple. but we adore our present housemates and even though there are an awful lot of piles to sort through (since we neglected to consider boxing up), once we’re settled in we’ll have more space – kathryn will get a dedicated crafting station, and i’ll be able to paint from home. it’s going to be great.

title, part two: withdrawing back. this past week has been one of the worst in recent memory, and for the first time in quite a while, it’s not because i’m stuck in my head and/or depressed.

the bRAF inhibitor genetic treatment (aka zelboraf) that stopped my disease in its tracks had some pretty unpleasant side effects; most troubling was the debilitating joint pain, which floated from hands to feet to neck to hips to ankles seemingly at random. back in 2011, a NY times article described the great promise of the drug, but it also told the story of a patient who “said the drug caused such extreme pain at one point that “I called in the children and said, ‘I’m done, I can’t do this any more.’ ”” i was there once, and after a particularly unpleasant experience with my first pain management specialist, i found a marvelous man by the name of dr. tim canty, who has since gone on to treat multiple melanoma patients dealing with the same crippling pain. it must have been about 18 months ago that he put me on exalgo, a new (and pricey) time-release pain medication that made a great difference to me, without many of the hazy, sedating effects of previous drugs i’d tried (methadone in particular). because it was a time-release capsule, the narcotizing effects were significantly diminished, as was my inclination towards possible abuse.

but at the start of this month, our insurance changed (nearly all for the better) and the new company decided not to cover the drug (a month’s supply runs near $1000, compared to other opioids which run pennies on the pill). in the past, when i’ve stopped taking medications of this magnitude, i’ve had time to step down, milligram by milligram. this time, i went from 24 mg a day for well over a year to zero, cold turkey. exalgo is hydromorphone – it’s essentially morphine. withdrawal is not a strong enough word to describe the torture i’ve endured over the past week. today is the sixth day and i’m still not back to 100%, though the worst is past. it didn’t help matters that i was fighting (and losing the battle with) a vicious cold; i’d say the best word to describe my week was wretched. there was retching, and there were bugs under my skin, and long, sleepless nights of tossing and turning and sweating out the toxins. thankfully there were no nightmarish babies on the ceiling a la trainspotting (watch with caution).  i’m nearly free of the drug now, but the week is already lost, and with it a chance to wine and dine my lady on valentine’s day (not my favorite holiday, but still).

my body is in a place where the pain relief just isn’t necessary any more – i’m stronger and healthier than i’ve been in a long time – but my goodness, i wish i’d had a bit more control over the process. i’ll be awfully glad when i’m at full strength again.

three weeks?!?

January 31st, 2013

has it really been so long since i’ve posted here? long-time readers may remember that when i drop off the map for a while, it’s because i’m not doing so well. that’s far from the truth this time. the reality is that i now (as of next week) have five families on my weekly roster. most of them require only a few hours a week, but it’s all adding up, and, as i expected, the regular short shifts extend to full days on a regular basis. as much as i love working with kids, it is absolutely exhausting, and i’ve needed every bit of my down time to recover.

i think every day about what i could post, but honestly, i’m closing in on some semblance of normalcy, and, well, normalcy lacks the intense drama of say, fighting off a terminal illness. do you want to hear about how i was so tired at the end of my eight-hour day with a two-year-old that i melted my brain with a couple episodes of true blood? also i read some comics and checked the news about the impending super bowl (go niners!). oh! and i did my laundry.

what a crazy night, right?

i apologize if any of you were concerned – as i said, i usually avoid posting when i get down on myself, but that’s not the case at all. i don’t have time to feel down, which is a dramatic change from the past few years. on top of my kid supervision, kathryn and i are switching apartments (within our present house, which we hope to never leave!) next week, and i’m moving my studio back home – given my scheduling constraints, i was having trouble getting down to the studio before my afternoon shifts with kids. since the studio is a shared space, i have to set up and break down each time i come to work, which i don’t mind so much but it makes it tough to get any momentum, and if, for instance, it’s a monday and i only work with kids for a couple hours, i have to reset entirely if i return that evening. kathryn and i are going to set up our new space in a way that will allow her room to craft/sew/decoupage and for me to paint. i’m excited for the change, as i have a ton of outstanding commissions that have fallen by the wayside as i tend to my flock.

also, i’m nearly two months into a course of twice-weekly personal training sessions at the expert hands of a former air force captain, an all-around excellent individual and a close friend. just to clarify, those are all the same person – some of you might remember jon from his HOO-AH! toast at our wedding (is that how you spell HOOAH? HUA?). it feels so good to be restoring my broken body to some semblance of its former strength.

given my bad habits of sleeping late and idling around the house (granted, habits that were latent but significantly worsened by cancer treatment, understandably i think), it’s a joy to be up early with kathryn every morning, seeing the light cast across brooklyn from the east (how bizarre!!), discovering the awe-inspiring range of colors and smells that emanate from the gowanus canal (RIP gowanus dolphin!!), getting to enjoy the day rather than waking up late and feeling sorry for/angry with myself.

because i am SO done with treating myself like that.

the kids are alright

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.

the turning of the year

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.

sent from my ipad

December 25th, 2012

well, friends and family, it’s christmas day! i hope you’re able to spend it happily ensconced around the hearth with loved ones, or at least in close contact with those far away. i can think of a handful of you who face the holiday dearly missing your recently departed, and to you i send compassion and strength. we’re especially missing our dog maggie, as this is our first trip to the twin cities since her quiet passing. the wind chill is in the single digits, so i suppose it’s a blessing that no one has to walk her today. still, she was much loved and is much mourned.

i don’t want to spend a ton of time posting, but kathryn got me a new wireless keyboard for my ipad (along with many other, more personal gifts) so i just *had* to sit down and try it out. i don’t like taking my laptop to the studio, but it’s nice to have the ability to write while i’m there and the touch keyboard is a bit above passable. so now i can (hopefully) be better about responding to email!

though some of you aren’t christian – i’m not exactly a “christ is lord” kind of guy myself – i adore the traditions and the focused family time the season brings. any reminder to love, respect, and care for each other is just fine by me. and i’d trade all the gifts in the world for this chance to celebrate here in st. paul, gathering with my family (though we miss the wilkenings terribly!) and the community of unity church, without the spectre of illness hanging over our heads. Having spent much of the past year beating back the noontime demons of severe depression and overwhelming anxiety, i feel so ready for all the promise that 2013 holds.

much love to you all, and happy holidays!

Holiday rush!

December 20th, 2012

My new nanny-heavy schedule plus the craziness of the season has limited my posting. I have yet to finish my tale of the manatees, or address the Newtown tragedy – not that I would know where to begin wading into that sea of heartbreak, grief, pain and anger.

I’m about to start an afternoon of focused gift-making, but before I begin I wanted to make sure and let you know that it’s Thursday again – which means that The Newlywed Game airs tonight! We’re hoping our episode is on this time – as a reminder, the four episodes are on Game Show Network (GSN) from 8 to 10 pm. We’re working on getting a copy (the show doesn’t provide one), so if you miss it, hopefully we can upload it so you can see us embarrass ourselves on television…

i am disappoint.

December 14th, 2012

sorry to those of you who were all geared up to watch the show last night. the producers warned us that the airdate might shift a bit. all i can recommend is that you record it next thursday (the solstice!) and hope for the best. you’ll know right away if it’s our episode by checking out the host – if she has long-ish hair and is wearing a green dress, then it just might be our episode.

i’m hoping it’s on next thursday, because then we can watch it with my fam in st. paul. if you’re wondering how we did, you’ll just have to wait another week (at least!).