as many of you know, i’m in the process of turning my story of cancer survival into a graphic novel. i think the visual medium will give a great visceral feel to the story – i can tell you that i have a bulb that drains fluid out of my groin, but a drawing of it really drives the impact of the image home. my friend suerte has volunteered as my artist – he’s an incredibly talented painter and tattoo artist, not to mention the author of a graphic memoir. check out his impressive gallery here. if anyone in the new york area wants a tattoo, get in touch with suerte.
as part of the planning process, i’m consolidating groinstrong into a single, bound document – it’ll end up being hundreds of pages by the time i’m done. in reading through my entries from my very first surgery in may 2008, i was struck by my boundless optimism and manic enthusiasm. i’d forgotten that i used to post a half-dozen times a day! the last couple years have worn me down a bit – only understandable, i think. it’s been a long haul. but i’m so glad to have the record of my experience. i’ve never been a very effective journaler, and there’s something powerful about being able to reach into your past and see what’s there. in one entry i complained about having to wait two hours at the doctor – my, how that’s changed. i thought that my time roughing it through africa had taught me patience, but i have achieved a whole new level of understanding. the world does not bend, no matter the frantic tugging. i have my crosswords, and my comic books, and when the world is ready for me, then it will be my turn. what a waste of energy to fight the natural way of things.
“I consider myself very lucky after all of the surgeries and treatments to have all of my limbs, and no brain damage.”
that was one of my lines from the WCBS story last week – it was in the online text, not in the video. i’ve been dwelling on it recently. even through this seemingly never-ending trial has been pretty much awful across the board, i am indeed very lucky. given the extent of my disease, i do indeed have all extremities intact. i played softball yesterday for the first time in two years, and although i had no speed out of the box and a significantly weakened swing, it was glorious. it is surely a clichè, but if my battle with cancer has given me anything, it is a greater appreciation for life’s little victories. i am playing softball, and it is a miracle. even if we lost.
the young adult cancer conference last month only put my great luck into stark focus. there were amputees. there were people abandoned by their partners and friends. there were patients fighting with their doctors about long-term care, doctors who never brought up fertility preservation for people who are now sterile or infertile.
i was shocked to see that dr. pavlick was left off new york magazine’s list of the best doctors in new york. she and her team have been such a blessing and their supportive, healing environment has made all the difference. it’s been suggested many times that i shift to the cancer-fighting machine that is memorial sloan-kettering, but it would take a drastic shift in treatment to even consider that change. i neglected to mention in the WCBS piece how important their care has been to me, so this is a bit of apologia to make sure they get their due. my family and friends have raised over $10,000 towards my ever-present medical expenses, and for them, and, as you all know by now, to my dear adoring/adorable/adored wife, i am eternally grateful. but all their supportive efforts would be for naught without the guiding hand of my doctor and her nurses.
so even though this cancer is a scourge i would not wish on my worst enemy, it has given me such a deep and abiding appreciation for all those who have been at my side through it all.
this weekend kathryn and i were lucky enough to attend the OMG cancer summit, a conference for young adult survivors and their caregivers and friends. there were panels on oncofertility, relationships, survivor stories, and even a keynote by ethan zohn, vassar grad and survivor winner (as in the CBS show).
the energy at the conference was something to behold. the bald heads, the shared experience of pain and suffering, the sense that we all were indeed the lucky ones – it was a powerful reminder of the tenuous hold we all have on our fragile lives.
our lives are all fragile, all fleeting, whether or not you have cancer. but being a young(ish) person and facing your mortality, facing the fact that your body is eating itself, you gain an enhanced sense of just how fragile you really are.
i would never wish the trials of cancer on anyone. but there are lessons to be learned. without the torture of the last two years, i don’t think i would truly appreciate the value of a hug from family and friend, the power of a letter, or a giant oversize novelty congratulations card (thanks bev). i would never hold in my heart the real and never-ceasing love that i expressed below.
so thank you, cancer. thank you for your lessons on life, and love, and death.
to my fellow new yorkers – and, i would guess, as well, to the residents of the eastern seaboard in general – it’s another wicked april scorcher today. i hope you’re all being good to your body and WEARING SUNSCREEN. seriously, skipping the sunscreen is soft suicide.
i hope you’ve all read the sunscreen speech by chicago tribune columnist mary schmich - it is not, as the internet tried to claim for many years, written by kurt vonnegut – although vonnegut’s not writing this speech makes him no less awesome. as we head into commencement season, i can’t imagine a better collection of advice to any green graduates out there. it is about so much more than sunscreen… and yet it is entirely about sunscreen. enjoy.
Ladies and gentlemen of the class of ’97:
Wear sunscreen.
If I could offer you only one tip for the future, sunscreen would be it. Scientists have proven the long-term benefits of sunscreen, whereas the rest of my advice has no basis more reliable than my own meandering experience. I will dispense this advice now.
Enjoy the power and beauty of your youth. Oh, never mind. You will not understand the power and beauty of your youth until they’ve faded. But trust me, in 20 years, you’ll look back at photos of yourself and recall in a way you can’t grasp now how much possibility lay before you and how fabulous you really looked. You are not as fat as you imagine.
Don’t worry about the future. Or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blindside you at 4 p.m. on some idle Tuesday.
Do one thing every day that scares you.
Sing.
Don’t be reckless with other people’s hearts. Don’t put up with people who are reckless with yours.
Floss.
Don’t waste your time on jealousy. Sometimes you’re ahead, sometimes you’re behind. The race is long and, in the end, it’s only with yourself.
Remember compliments you receive. Forget the insults. If you succeed in doing this, tell me how.
Keep your old love letters. Throw away your old bank statements.
Stretch.
Don’t feel guilty if you don’t know what you want to do with your life. The most interesting people I know didn’t know at 22 what they wanted to do with their lives. Some of the most interesting 40-year-olds I know still don’t.
Get plenty of calcium. Be kind to your knees. You’ll miss them when they’re gone.
Maybe you’ll marry, maybe you won’t. Maybe you’ll have children, maybe you won’t. Maybe you’ll divorce at 40, maybe you’ll dance the funky chicken on your 75th wedding anniversary. Whatever you do, don’t congratulate yourself too much, or celebrate yourself either. Your choices are half chance. So are everybody else’s.
Enjoy your body. Don’t be afraid of it or of what other people think of it. It’s the greatest instrument you’ll ever own.
Dance, even if you have nowhere to do it but your living room.
Read the directions, even if you don’t follow them.
Do not read beauty magazines. They will only make you feel ugly.
Get to know your parents. You never know when they’ll be gone for good. Be nice to your siblings. They’re your best link to your past and the people most likely to stick with you in the future.
Understand that friends come and go, but with a precious few you should hold on. Work hard to bridge the gaps in geography and lifestyle, because the older you get, the more you need the people who knew you when you were young.
Live in New York City once, but leave before it makes you hard. Live in Northern California once, but leave before it makes you soft. Travel.
Accept certain inalienable truths: Prices will rise. Politicians will philander. You, too, will get old. And when you do, you’ll fantasize that when you were young, prices were reasonable, politicians were noble, and children respected their elders. Respect your elders.
Don’t expect anyone else to support you. Maybe you have a trust fund. Maybe you’ll have a wealthy spouse. But you never know when either one might run out.
Don’t mess too much with your hair or by the time you’re 40 it will look 85.
Be careful whose advice you buy, but be patient with those who supply it. Advice is a form of nostalgia. Dispensing it is a way of fishing the past from the disposal, wiping it off, painting over the ugly parts and recycling it for more than it is worth.
it’s late sunday evening, or early monday morning. i can’t sleep because my shoulder is bothering me. each breath stretches my skin in excruciating directions. and i have been warned that over the next two or three weeks that it will, along with my growing fatigue, continue to get worse. and i say again, ouch.
what a two or three weeks this will be. i am surrounded by chaos. our house is in utter disarray after a weekend of bedbug extermination. our belongings are heaped in countless trash bags, and each needed item means an intensive search. my pajamas… would i have put them with pants? or with underlayers? or maybe they were gathered up in the furious dash to ready the house for the exterminator’s arrival. perhaps they will remain hidden until we are able to unpack, if and when all signs of the bugs have disappeared, in two or three weeks.
it’s been so long since i’ve lived out of bags. it is at once liberating and endlessly frustrating, as are most of the times i have lived out of bags. the single, over-stuffed backpack that sustained me through my african travels was my lifeblood. it carried all my worldly possessions: my recording equipment, a few changes of clothes, the occasional precious souvenir. i would lock the zippers closed with combination locks and then lock the bag to some immoveable object – the rod at the back of the luggage compartment of an ancient trans-tanzanian bus, the roof rack of a death-trap minivan, the plumbing in my hotel room. sometimes bags nearby would be even more fiercely protected, wrapped in a metal mesh with its own set of locks, secured with motorcycle-style cobra chains. of course, all my precautions notwithstanding, i was still the victim of a robbery, losing my recording equipment and my irreplaceable journal full of notes and translations and dreams. possessions are indeed fleeting.
so if i don’t return your call this week, or make it to your show, or properly respond to your facebook invite, it is probably because i am lost in a bag somewhere, looking for my pajamas and gingerly applying radiagel to the primal burn on my shoulder.
a revisiting of forrest church’s philosophy, courtesy of a thanksgiving sermon by my old friend mark.
As usual, Forrest, a bit on the thin side, his beard unusually scraggy, delivered one of his amazing, and quite typical, self-effacing talks, with a smile never far from his face. But he was not talking about cheerful things, or at least, things that fit neatly into that category. He was talking about his diagnosis, his manner of dying and his theology of living. “Here’s how I see it,” he said in conclusion.
“Love what you have. Do what you can. Be who you are.”
Many of us, however, never got past the first phrase. “Love what you have?!! Love what you HAVE? Man, you have terminal cancer! Are you telling me you love that cancer, are
thankful, to have been given such a diagnosis?”
Sure enough, when he was done, he had enough energy left to field a few questions, and the inner question that I just expressed was asked, worded almost as I worded it.
“Look,” answered Forrest, (and here I am offering my version of what he said…there may be others who heard him differently), “I don’t want to die of cancer. I don’t want to die of anything. But the world doesn’t spin on my axis. Nor yours. Death, unevenly distributed by age, is the truth about all of our lives. To be thankful only for the good things of this life, the good luck, grace, abundance and joy, without paying attention that they are, all of them, yes, all of them, tangled up completely with the tragic things of life, is to miss the point of loving what you have, about being grateful for your particular life. I can’t single out my cancer and say that it is something completely separated out from my need to love and be loved, my decisions about career and family, my every other sorrow and joy. It all runs together, if I am ruthlessly honest, and what good is theology if it’s not ruthlessly honest? My cancer is not outside my life. It’s part and parcel with rest of my life…it’s all part of who I am. And I am part of your life, and you are part of mine. I love what I have, because there is no way to separate it all out from what I do not have, in this case, health. Besides,” he added by way of ironic humor, “if I scrunched up my face and sent all of my hatred toward my cancer, and told it that I didn’t think it was fair that I was dying so young, do you think I would live any longer?”
I too struggled against his point. But over the days since then, I have to admit he does have one. In some ways, the first line of his mantra, “love what you have,” is another way of saying: “Well, life isn’t fair, you know.”
just a few hours ago, reverend forrest church, a good friend of mine (and of many) lost his battle with esophageal cancer, a battle that most expected to be far shorter than forrest’s indomitable spirit would allow. i am up late, still under the sway of the pre-chemo steroids, which, as they fade away, make sleep difficult. with the massive doses of daily steroids behind me, i’ve encountered far fewer of the anxious treacherous late nights. but the passing of a friend is enough to keep me up.
i am glancing through rev. church’s book love and death, with its signed note exhorting me, whenever i should so desire, to call on the services of an old chemo pro. which i did, but of course not nearly enough. our few meetings were enlightening, even as they moved into uncomfortable or difficult territory; how to be present with your family and dearest friends about your potential passing, how to come to terms with putting your own goals and ambitions on hold, how to live every day staring into the eyes of mortality. all our passings are guaranteed, but for many cancer patients (and patients of so many terminal illnesses), death is transformed, from an abstract, distant entity (even more so at the age of 29) to a presence that changes every relationship – from those loved most dear to even the most casual encounter with a stranger and the decision to explain a bright pink bracelet on your wrist.
forrest explained that the goal of our lives should be “to live in such a way that our lives will prove worth dying for.” i’m sure his inevitable obituary in the new york times tomorrow will state that rev. church was brave enough, even before his terminal diagnosis, to live in just such a way. his simple, challenging mantra – want what you have, do what you can, be who you are – was a mantra in which he powerfully believed and tried to live to its fullest as he approached his endtime (as he discussed last year on fresh air). love and death is full of meditations such as this one, along with advice for helping others walk paths of pain, illness, loss and death. learning to support others through our own trials is a unique and valuable benefit – silver linings can be hard to see amongst dark clouds of suffering, but there are always lessons, even lessons of pain, full of difficulty and frustration and rage.
“death is love’s measure,” forrest writes. “not only is our grief when someone dies testimony to our love, but when we ourselves die, the love we have given to others is the one thing death can’t kill.”
for what little time forrest and i had together, i am and will forever be eternally grateful. the love and wisdom he passed on to me is one thing death truly cannot kill. i can only hope to do justice to his principles.
Let us want what we have -
Praying for health, if we are blessed with health.
For friendship, if we are blessed with friendship.
For family, if we are blessed with family.
For work, if we are blessed with tasks that await our doing.
And if our lives are dark, may we remember to want nothing more than the loving
Affection of those whose hearts are broken by our pain.
Let us do what we can -
Not dream impossible dreams or climb every mountain,
But dream one possible dream and climb one splendid mountain,
That our life may be blessed with attainable meaning.
And let us be who we are -
Embrace our God-given nature and talents.
Answer the call that is ours, not another’s,
Thereby enhancing our little world and the greater world we share….
Call it thoughtful wishing.
All we have to do it put our heart in it.
And there’s one more bonus.
Unlike wishful thinking, thoughtful wishes always come true.
back to the doctor today. we’re getting everything set up to start chemo again on wednesday night. i have been a different person these last couple of weeks – i’ve gained ten pounds, i’ve been exercising almost every day, and i managed to make a day trip (thanks to abigail for transport) to worcester to see our friend lynne (myspace quote: “i’m small.“) in a play about elvis. they flew in an elvis impersonator from texas! it was as much fun to watch the play as it was to watch the women in the audience swoon. brooklyn is about three hours away, but if you are closer to worcester, i definitely recommend the trip. lynne is incredibly talented… and you get to see her dressed up like a showgirl!
on a more serious note… obviously i am far from the only one struggling with cancer, but over the last few months, it seems that cancer is waiting around every turn, in every walk of life. my cousin’s father-in-law recurred. my coworker’s teenage sister succumbed to a long and painful battle. just last week, my ex-girlfriend called with news that she had been diagnosed with thyroid cancer and her doctors were concerned that it had already metastasized.
i want to take a moment to recognize those lost, those in pain, those facing their worst fears, and hold them in this most public of hearts. groinstrong is not a whole lot more than hot pink bracelets and stickers of a scantily-clad male body, or even groinstrong underwear (still in production). if only those pink rings were magical q-ray ionic bracelets and could stay the hand of disease.
virgil: “for ere this we have not been ignorant of misfortune… recall your courage and banish sad fear. perhaps even this distress it will some day be a joy to recall.”
attempting to sleep without pharmaceutical assistance… means i don’t sleep. rather than stay in bed and pretend, i am, strangely, awake and aware at 9 am. i have made breakfast and a fresh pot of coffee for the house. i am reading the new yorker, excitedly making my way towards a piece on hannah arendt (she’s a favorite of mine – thank you, professor davison). my housemate, recently returned from india, is awake as well, and i believe him to be also discombobulated. unusual angles of sunlight, rhythms of traffic, noises of this early hour. i ask myself, well, how did i get here?
i woke up this morning to discover the nearly unreadable post below. way to go, midnight brain! this is the same brain that produced the cards that have hopefully now made their way to you… i do hope they make some sort of sense. if they are complete gibberish, shoot me an email and i can explain my feelings of gratitude more explicitly.
i have a raging headache and am still pretty tremendously swollen. when i flew for the last time in october, i still had at least one set of working lymph nodes in my groin… and now i have none. so the pressure changes have taken a significant toll on my legs.
it is strange to be twenty nine and worried about how my lymph is flowing these days and whether i can pee standing up and will i poop today or will the chemo and heavy painkillers prevent it? after years of fear, turning thirty just isn’t scary any more. i’ll just be happy if i can walk comfortably.
