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.

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

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.

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!

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.

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.

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!!!

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.

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.

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.

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.

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.

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!

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’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!).

Can you believe I still haven’t told my own mother how we did? “But I’m your mother!” she said. “But I signed an non-disclosure agreement!” I responded, though what I meant was, “You’re a gossip and poor keeper of secrets!” Sorry mom. True.

I’ve spent the day with one of my many part-time children and got too busy to remember to give y’all more advance notice of the broadcast. Hope you can catch it!

the wedding was awesome. kathryn’s extended family is wonderful and so our their friends, and it was a delightful privilege to celebrate with them. the company was excellent, the setting was superb, great food, long dance party with a great playlist – can’t hope for much more! our hotel was right on the river and ibises grazed the grounds.

it was a quick turnaround, only to be down there from friday night to sunday mid-day, and it didn’t help that our flight home was caught in a holding pattern through rough weather. still, as louis C.K. points out, it’s hard to complain about the magic of a steel bird flying many miles up into the air and getting you safely to your destination 99.9% of the time. we were hours late, but it would have taken far, far longer on the bus. or walking.

i started this point some while ago this evening, and my description of our swimming with the manatees got totally out of hand. i’ll try to find time tomorrow to finish it up. because it was super, super amazing. we had an underwater camera and got a DVD of our trip, so i’ll post those eventually.

after many weeks of struggling mightily, i feel like i’ve turned a corner. this morning i started working with a close friend who, for many years, has offered his services as a personal trainer to help me rebuild my so very broken body. i’m sure i’ll be stiff tomorrow but it feels so good to be breaking a sweat (a light one, for now). almost every day this week i’m scheduled to spend time with kids, and that (in reasonable doses) is just about my favorite job. wait, i’m playing hide-and-seek and getting paid for it? today i brought my work home with me: a drawing from our 5-year-old neighbor dash, with a note to kathryn written inside a heart:

UR MY BEST NABR.

how great is that?

I’m amazed at how dramatically different I feel after just a week of focused activity, getting out of the house and starting to break the cycle of wallowing in depression and anxiety. There’s still lots of work to be done, but I’m trying to be patient with myself as I take small steps towards wholeness. Thanks to all of you who’ve reached out and offered a comforting word or potential work. Surviving cancer is a community effort, and without the support of all of you, my recent hard times would have been impossible to manage. Frankly, you’ve kept me alive.

And now Kathryn and I get a mini-vacation! I’m on my way to JFK to meet her for our flight to Tampa – one of her cousins is getting married! I wish we were able to stay past Sunday afternoon, to see my brother Michael and to visit Discovery Cove, where they offer the chance to swim with dolphins. You spend the morning training with your dolphin in a pool and in the afternoon, when you’ve developed a little rapport with your designated aquatic mammal, you hang on to its dorsal fin as it swims out into the ocean. Doesn’t that sound awesome? And expensive? Bonus: the terminally ill and their families get to go for free! We’ll make it there some day. In the meantime, we’ve scheduled the next best thing: swimming with the manatees! We’re getting up at dawn tomorrow and heading out to rub some serious sea cow belly. Kathryn got an underwater disposable camera, so pictures are forthcoming…

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.

so: i got my scan results this morning, and that’s three clean scans in a row. heck yeah! it’s a turkey! my oncologist said that the tech at the scan lab actually called her to see what treatments had been responsible for such a remarkable turnaround. the fact that i’ve been able to keep the cancer away for six months now without any treatment is a bit of a miracle. and now we’re moving to scans every six months – amazing.

kat & are just back from a celebratory dinner and i’d much rather be cuddling with her than posting here – but i wanted to make sure those of you who still check the blog got the good news!

i’ve made it home to brooklyn, only to deal with continuing symptoms of this cellulitis flare-up. though my course of antibiotics is ongoing and will last another five days, today i’m mildly febrile, achy and exhausted. my legs really don’t like being at 30,000 feet, and with the added strain of fighting off the infection, my re-entry to brooklyn has been less than comfortable. i’m on my way to an acupuncture session and hoping that the immune-boosting properties of the needles will help my recovery along.

it certainly did raise my spirits to watch the niners game last night, though i enjoyed their rout of the bears a little less since i did so alone. kathryn decided to change her ticket and spend a few extra days working on emptying her family home. it’s a mammoth job – they’ve lived there for 36 years – and it was awfully frustrating to be laid up and unable to lend a hand. still, kathryn and her brothers were supportive and understanding, and they managed to achieve a remarkable amount given the short weekend. it’s beautiful to see how dedicated they are to each other, and to their parents. the challenges of elder care are daunting and difficult, to say the least, and they’ve managed the transition with grace and patience. we all look forward to visiting nashville once the house is empty, when we’ll hopefully be able to focus entirely on being together and enjoying the time we have as a family.

my lovely will return home just in time to spend thanksgiving with friends here in brooklyn; of course, it’s always hard to spend a holiday away from loving family. i wish there was a way to travel instantly between brooklyn and portland, and the bay, and nashville, and the many cities that hold our loved ones. my holidays aren’t nearly as teary-eyed as they were a few years back, when my health was such that future celebrations seemed unlikely. but the fact that we’ve managed to control my disease doesn’t make the time we spend together any less precious. seeing the devastation and hardship that continues from the storm last month, it makes me even more grateful than usual to have so many to love and so much love to receive in kind. there are still thousands who are struggling through frigid, dark nights, sifting through the wreckage of their lives. and there are many millions more who struggled long before the storm, with pain, with sadness, devastated by poverty or illness, wracked by war.

while the season makes me thankful for all that i have, it also makes real and tangible the suffering of those who have little to celebrate. i hope that as you gather with your friends and family, that your hearth is warm and inviting, that your turkey is delicious and not overcooked, and that you remember how lucky we are simply to have each other.

Fever: My fever is gone, and I appear to have dodged the cellulitis bullet. I’m still feeling weak and exhausted, and I’ve slept on and off through the day. It’s frustration to not be able to lend a hand with the massive project that is emptying out Kathryn’s family home of 36 years. Though there have been tender moments, looking over elementary school report cards and every birthday greeting Kat handmade for her parents (complete with a company name, barcode and discounted sale prices),the job as a whole is so completely overwhelming that it’s hard to imagine how the small crew will even make a dent by the end of the weekend. Still, they press on, through receipts for furniture purchased in the late 70s, through precious memories and the accumulated detritus of decades of family life.

& Dog: this is intriguing. Kathryn’s eldest brother Scott has a beloved German Shepherd named Sophie. She’s incredibly sweet to everyone – except, thus far, me. She has lunged at me a number of times in the past, going so far as to manage to bite me. She’ll sit and stare at me, ears back, tail tucked in a combination of aggression and fear. I’m the only person to ever receive this kind of treatment. Kathryn’s mother Lynn suggested a ways back that she was reacting to my cancer; science has proven that canines are remarkably good at detecting disease. It’s difficult to say, but here’s what’s so intriguing. I’ve been cancer-free for a while now, and this is my first visit with Sophie in about a year.

And guess what? Her behavior towards me has completely changed. She cuddles up to me rather than running away; for the first time, she’s allowed me to rub her belly. Could it be that she was reacting to my disease, that she knew somehow that I was sick? I have a scan coming up next week – if she’s finally treating me as a friend, does that mean I can stop worrying? Not that I’m particularly concerned; nearly every time my cancer has come back, I’ve had a sense of its presence long before it was confirmed via scan. I’m feeling as healthy as I have in a long time – this bout of cellulitis notwithstanding – and I’ve been feeling confident about the upcoming scan.
Sophie’s choice (ha!) to be my friend just reinforces that confidence.

Man, am I glad I was watching.

This morning I woke up with painful inflammation in a spot that should never be painful or inflamed. I felt feverish and overwhelmingly achy, and the splotchy redness was spreading outwards from my groin.

I’ve had another recurrence of cellulitis. Boooooo! I’ve been hospitalized numerous times for this skin infection – with my inguinal (groin area) lymph nodes surgically removed, my thighs lack an effective first-line immune response. My battles with cellulitis have damn near killed me – I’ve spiked fevers as high as 106 degrees (I’ve never seen a nurse run so fast after she measured my dangerously high temp reading – I ended up sleeping on a bed of ice to try and cool my body down).

So, this morning, once I had a better sense that I was indeed getting sick, I immediately emailed my infectious diseases specialist, and within 30 seconds of hitting send, she called me up. It’s crucial that we move fast as soon as the initial warning signs are present. I’ve started a round of horse-pill antibiotics, and now I just have to wait and see if we managed to catch the infection before it becomes life-threatening. Right now my temp is hovering around 100 degrees; if it hits 102, I’ll have to head to the emergency room.

This is nothing new, but the situation is made vastly more complicated due to the fact that Kathryn and I are in Nashville until Monday morning. Luckily there’s a top-notch hospital and cancer center nearby at Vanderbilt – of course, I’m keeping my fingers and toes crossed that I don’t end up in a hospital bed. And, as my dedicated readers will know, once I check in to a hospital, I usually end up stuck there for four or five days. That would *not* be good. Or fun.

I’m so, so, so tired of my body interrupting my life. We have a lot of work to do this weekend, and now I’m on doctors’ orders to avoid any labor, as the movement and strain might very well worsen and spread the infection. This is the second time my cellulitis has shut me down while I’m traveling – last time, in Portland, I was within half a degree of finding myself in the emergency room. Instead of hiking in the Oregonian woods and exploring one of my favorite cities, I ended up confined to bed. Now I’m in the same situation – the fall foliage is at a glorious peak down here, and we have a huge (and emotional) task ahead of us in clearing out Kathryn’s childhood home. Instead of helping, I’m stuck in bed and feeling awfully angry with my own body. Just when it seems like I’m turning a corner and diving into my new post-cancer life, my body disagrees and sabotages my efforts.

Sigh. Such is the life of all those who struggle with compromised immune systems.

I’m exhausted and have to crash – I’ll be sure to post updates as things progress; I hope to god my posting isn’t a way to pass the many hours involved in a visit to the ER. 

but the joy is tempered with a sobering dose of sad reality. as the snow begins to stick and weather reports warn of  impending wintry mess, i can’t forget the thousands upon thousands who are without homes, without power, without heat, their lives and livelihoods uprooted or washed away entirely by last week’s devastating storm. on sunday, kathryn and i walked down to red hook and spent part of the afternoon helping hand out donations of food and water. we’d hoped to lend a hand with the cleanup efforts, but with multiple feet of standing water in basements throughout the neighborhood, we were a far cry from the pumps and generators that were most desperately required. in the rockaways, in staten island, just down the street in the toxic shadow of the gowanus canal; there is much, much more work to be done. i only wish that i was better suited to the task.

instead, i volunteered until my aching back told me to stop lifting bags of canned goods and palettes of bottled water. i managed to catch a mild cold over the course of our day in red hook; i knew it was a risk given the less-than-sanitary conditions. and when i get a mild cold, it’s more than mild. i’m not significantly ill, but i’m achy and fatigued enough that it’s knocked me down for the week thus far. i feel so lucky to have my health, among many other amenities – hearing the horror stories coming out of the evacuation of NYU’s hospital, i’ve never been so glad to be unhospitalized. as of yesterday, i still couldn’t reach my oncologist’s office – phone lines throughout manhattan have yet to fully recover. can you imagine if i was in treatment right now? or if my cellulitis had recurred before the storm? i shudder to consider the frightening possibilities.

as the wintry mix continues to swirl around my well-heated room, i am most definitely counting my blessings, and keeping in my prayers all those who are in the midst of terrible challenges, whether the weather or the stormy situations that our own bodies can create.