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seventh new york-iversary

Wednesday, March 20th, 2013

this past sunday marked seven years since i arrived in brooklyn. a love supreme was playing as my dad and i drove over the george washington bridge. the empire state building was lit green for st. patrick’s day. i was already missing minnesota and the comforts of home, and i was broken-hearted after an amicable and expected but nonetheless sad breakup. i wept and listened to sufjan stevens’ chicago:

i drove to new york
in the van, with my friend
we slept in parking lots
i don’t mind, i don’t mind

i was in love with the place
in my mind, in my mind
i made a lot of mistakes
in my mind, in my mind

march, contrary to poetic postulations, is truly the cruelest month, with biting wind rustling budding trees and wintry santorum spitting on pale sad-eyed bundles that once were happy people; even in march, when i miss california tremendously, the most, when the blooming tropical trees and the eucalyptus and bay leaves call to me: i’m still glad to be here.

a year into my time here, i was living the dream. i moved to new york hoping to work at the intersection of music, health care and african development – emphasis on hoping, because let’s face it, that’s an awfully narrow field. and somehow within weeks i went for what i thought would be an informational interview at the red hot organization and was offered a part-time position on the spot, working for a music label that produces compilations (amazing ones at that, e.g.) to raise funds for AIDS support organizations worldwide. um, what? obviously i was meant to be here, at that particular moment to do that particular work. and on the side, i put in my time between the sticks.

i was a wealthy drunk. bartending at magnetic field, a small rock n roll bar, was lucrative. a staff of one = no payouts. the pitcher full of dollar bills was my lifeblood. that, and scotch. but the true value of my time at magnetic field was the powerful and long-lasting connections to a deeply dedicated and supportive community. new york can be a tough town, and though i moved here knowing a handful of friends, i can’t imagine, i literally cannot imagine the course of my life without magnetic field and its denizens. along with seriously close friends and a seriously damaged liver, the bar brought kathryn into my life, which is (other than the gift of life, word to my moms & pops) is the greatest gift i’ve ever received.

a year in, and i was settled into my routine, working a couple days a week in my uber-fancy soho office, dining and drinking and sleeping my way around the city.

so it’s march 17th, 2007. a few days previous, i’d written on my old and sadly neglected blog:

do we take care of the people in our lives? do we care of ourselves? do you feel like you’ve done all you can to create positive forces in your life and in the lives of others? well, i’ve tended not to over the past couple years and it’s time for that to change.

let’s imagine, hypothetically, that we met that day, let’s say we went out to brunch, and you looked into my tea leaves and cast your i-ching sticks and threw a mean tarot and you predicted my future.

if you’d sat me down six years ago and said, in a few short years you’ll stop bartending and give up drinking, i would have laughed. i would have laughed heartily and ordered another bloody mary.

if you’d sat me down six years ago and said, in a few short years you’ll be married to the woman of your dreams, i would have been skeptical and amused.

if you’d sat me down six years ago, stared at the tarot cards in horror, saw the black dog in my tea, looked up from casting your sticks with a heavy sigh and said:

prepare yourself, because soon
you’ll be asked to endure years of agonizing surgeries
round after round after round of toxic treatment
side effects may include but are by no means limited to
loss of hairappetitesexdrivestabilityemploymentbodypartshappiness
also loss of life

you will lose count of the doctors and nurses and specialists for your braineyesshoulderhandsliverstomachkneefeet
not to mention the infectious diseases doc, you’ll need one of those
you will know nurses by name in the emergency room
and in the outpatient unit
and in the post-aenesthetic care unit
and on the oncology floor
you will have doctors, plural, on speed dial
you will lose count of the hours spent on hold
with insurance companies, hospitals, billing reps and collection agencies
there will be mountains of paperwork and towering spires of bills

you will make friends, friends who know your path
friends who share your pain and fear
and you will watch them die
withering away like a whittled stick, cut down to nothing

you will lose count of the thousands of needles that pierce your skin
colonoscopies will be old hat
same for highly radioactive scans
same for swallowing pills
same for swallowing pills that are cameras

listen, soon you will find yourself at 28 years old
you will be 28 and you will have cancer
and it’s serious, it’s bad
it’s in your lymph nodes (and you will learn what a lymph node is)
some people last weeks, months if they’re lucky
that the five-year survival rate for your diagnosis is eight percent

if you’d sat me down six years ago and said all this:

i would have been terrified. quite reasonably, i think.

but -

if you’d sat me down six years ago and said:

the path you will walk won’t be easy
no, it will in fact be incredibly hard
the most difficult thing you’ve ever done

but down that path, though it is quite far, and treacherous,
there is a new you
a better friendhusbandloverbrotherson
with more compassion and empathy
with a deeper sense of purpose
with a greater respect for life
you will love more strongly
you will listen more carefully

you will take care of the people in your life
you will take care of yourself
you will do all you can to create positive forces in your life and the lives of others.

if you’d sat me down six years ago and said, in order to become the person you were meant to be, you’ll have to go through hell. there will be blood, and pain, and sacrifice, and loss, but you will be alive, and you will be in love, and you will be loved:

would i have chosen to walk the path?
would i hesitate?
if i knew in no uncertain terms that the cancer would kill me, and soon, would i force the issue? would i ask modern medicine to prolong my life, and possibly prolong my suffering, and the attendant suffering of those i love and those who love me?

i would – though i understand and respect those who make the choice to live treatment-free for as long as they’re able.

if you’d sat me down six years ago and said, in 2013 you will be a budding abstract painter, i would answered your survey by filling bubble number five, for strongly disagree.

but here i am, and here we are, and, to finish off this obnoxiously long and winding post, here is this:

you might remember that i entered a cancer art contest last year – though my submission (“hand in hand” – click to jog your memory) didn’t win (a travesty!), it was still a valuable exercise, and i’ve had two requests so far to recreate it. today i delivered “hand in hand III,” a gift to my excellent pain management doctor. i’d never worked on such a large scale before – the canvas is 48″ x 60″, 4 feet by 5 feet. i made sure to take some pictures before i brought it to the office (in a hired van, as it wouldn’t come close to fitting through the subway turnstiles). see below and click to embiggen. i have another eight (!!) outstanding commissions.

i’m glad i chose new york.

hand in hand III

Posted in art, chemotherapy, clinical trials, complaining, gifts, gratitude, hospital visits, images, links, loss, love, melanoma, music, pain, painting, philosophizing, poetry, radiation, religion, rock and/or roll, sadness, skin cancer, tarot, weather | 7 Comments »

haunted

Monday, October 22nd, 2012

last night i lay in bed, sleepless at far too late an hour, thinking about how and what to share with you. the last couple weeks have been extraordinarily difficult, and i was trying to figure out the best word to describe how i’ve been feeling. haunted seems about right, and seasonally appropriate to boot.

today should be a day of joy and celebration, as kathryn and i are marking what we call our “second first” anniversary. since we were married initially at city hall, we now have two anniversaries, and if living with cancer has taught me anything, it’s to celebrate at every possible opportunity.  that weekend in swannanoa was so very special, and tonight we’re going to try and recreate the glorious dinner from our wedding reception a la asheville’s famous corner kitchen : pecan-crusted trout, ginger mashed sweet potatoes and southern-style green beans. i’m sure those of you who joined us for those magical days in the blue ridge will be wistful at the mention of the food. last night i gave kathryn what has become a traditional gift of a custom designed crossword, with clues from our lives together. for instance, general from a great broadway show and/or my favorite way to be? answer: buttnaked. (he’s in the book of mormon. the play, not the book. obviously.)

and while i awoke feeling upbeat about the day to come, that hasn’t happened in a while. instead, the norm these days is for me to rise with dread and anxiety tied up inside me like a gordian knot. i look at the stack of unpaid bills threatening me from the desk. i consider the empty bank account that holds no answers. i’m haunted by my mistakes, my failures. mostly, though, i think about these endless numbered days that i’ve wasted. i have a tendency, when things get overwhelming, to become utterly paralyzed, to a crippling pathological level. instead of chipping away, bit by bit, like i know i should, i turn my back on my responsibilities for another day, play video games, watch cartoons, do anything other than anything. i feel like a lost child. i literally spend hours upon hours doing nothing, wishing so dearly that i was doing something. my short, mid and long term to-do lists seem to epically undoable that it puts me into a tailspin of crushing depression.

and what haunts me is that i’ve brought it on myself. naturally, i’m conscious of cancer’s destructive power, and i still have a lot of recovering to do. i’m miraculously, wondrously free of disease, and that is a great and powerful gift – but i feel like the treatments and pain pills have melted my brain, irradiating whatever neurons promote focus, dedication, motivation, responsibility. and sure, this past week i’ve been sick, and struggling with a meandering migraine. but that happens all the time, and they’re easy excuses i can use to tell myself it’s ok to make no effort. there are definitely days where it’s necessary for me to shut down. after all the surgeries and poisons i’ve endured, my body has become a fragile thing. i don’t plan on returning to traditional full-time employment – i’d burn through a year of sick days in a few months – and i’ve set my life up in such a way that i’m able to have lots of down time. but that’s all it’s been recently: time that i’m down. i’ve tried a handful of more regular jobs and watched in helpless horror as i sabotaged my efforts again and again.

kathryn is working as hard as she ever has, and that’s saying a lot. she’s halfway through a stretch of twelve workdays in a row. that’s just cruel. i have a hard time reconciling my own lack of productivity, career-wise or other-, with the ways that she sacrifices herself to care for me, not to mention the continued support provided by you, my generous and caring community. it’s an incredible privilege to have the life that i do, to have nothing but free time – my life itself is a privilege, given my initially grim prognosis. and i’ll bet lots of you would give anything to not have a day job. i should be taking advantage, out wandering this unparalleled city, visiting museums, enjoying the fall, or at least writing songs, or making art, or sifting through years of disorganized pictures and music, but instead i pace my room, tortured from the outside by the multi-year construction project across the street and tortured from the inside by my own self-loathing. i wish i could say i’m trying my best; instead, i’m simply not trying at all. i have serious issues with being too hard on myself – it’s a major topic in my conversations with my counselor at cancercare, but if you’d just spent a week (/month/year) ignoring all your responsibilities and escaping into passive, mindless entertainment, you might be a bit critical too. sarah and i are talking again today, and i’m planning on seeing my psychiatrist to discuss upping my anti-depressants. at this point, i’d try just about anything to break this vicious, destructive, infuriating cycle.

i apologize for starting the week off in such a brutal manner. i know that diary entries like this aren’t exactly pleasant reading, but i’m hoping that being honest here will keep me on track moving forward. i don’t want to feel the way that i do; i don’t want to spend another listless, atrophied day like so many before. when i get into bed each night, as i toss and turn and grapple with demons into the wee hours, i promise myself that tomorrow will be different, that tomorrow is another day.

and, as the beatles, here in bizarre and somewhat offensive cartoon fashion, remind us:

tomorrow never knows.

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Posted in cancercare, chemotherapy, complaining, gifts, gratitude, language, links, migraines, music, pain, philosophizing, radiation, rock and/or roll, sadness, therapy, videos | 3 Comments »

i went to zambia too.

Wednesday, July 11th, 2012

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

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

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

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

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

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

Posted in amazing, cancercare, chemotherapy, gifts, gratitude, images, pain, travel | Comments Off

this is what it feels like.

Sunday, June 24th, 2012

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Posted in amazing, chemotherapy, gratitude, hospital visits, love, videos | 2 Comments »

when groinstrong met poopstrong

Thursday, June 14th, 2012

hey kids. sorry for the posting delay. i’ve either been busy or asleep (but not both) and honestly, there hasn’t been a whole lot to report, at least health-wise. i’ve got a scan coming up on monday morning (MRI & CT scans of the abdomen) and the results on wednesday should give me a good idea of how the next few months will look regarding treatment. if the scan is clean, i get to continue living off-treatment, and every day off-treatment is a gift. when you’re in the midst of chemo (or a toxic clinical trial), it’s not easy to identify all of the ways that it’s poisoning you. it’s only once the treatment ends that you realize, wow, my short-term memory is back, or, gee, i can multitask again, or even, hey, i can use my hands and feet without excruciating pain!

this past weekend i was able to meet up with my new buddy poopstrong a.k.a. arijit - it’s always refreshing to have a chance to chat with other cancer survivors and corroborate on the misery of survivorship. over the course of treating his stage IV colon cancer (ouch.), arijit hit his lifetime insurance cap and has raised over $100,000 to cover the gap, helped by news stories and prizes donated by celebrities – of course, his indomitable spirit surely makes a difference. how would you manage your daily life with an ostomy bag? yeah, thought so.

and speaking of speaking with survivors, i’m just reviewing my remarks for this evening – i’ve been invited to cancercare’s annual gala tonight at the mandarin orient at columbus circle. i’ll be representing the survivor community and speaking for a few minutes. a town car is picking me up in a few hours. swanky! i’ll post the short speech here tomorrow – i don’t want to give away the surprise.

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Posted in amazing, chemotherapy, clinical trials, gratitude, pain | Comments Off

the other side of sunday.

Monday, May 14th, 2012

that being monday. it’s late into the night, or early in the morning, depending on how you’re feeling. me, i’m feeling a bit insomniac-y. not too surprising, i’d say, given what the week holds in store.

the surgery is scheduled for friday, though i won’t know exactly what time it will take place until late thursday afternoon. last week i spent four hours in pre-surgical testing – reviewing my medical history takes an awfully long time – and the nurse practitioner warned me that recovery from bowel resection can often involve lengthy hospital stays for extended monitoring; a full week would not be unusual. that’s an awfully long time in the less-than-pleasant atmosphere of the 16th floor oncology unit, no matter how wonderful the nurses and attendants may be. and they are wonderful, kind and caring, but they still have to put me in a shared room (always a crapshoot) and give me shots of heparin to the belly at 5 am (always awful).

to add to the unpleasantness of this particular recovery, it’s likely that i’ll wake up from surgery with both a feeding tube and a catheter. they shouldn’t remain in place for more than a day post-procedure, but that doesn’t make that initial return to consciousness any less painful or uncomfortable. i’ve never had a feeding tube before, though i have suffered through a catheter. i can’t remember at the moment whether i’ve shared this story, but it’s worth repeating – after one of my many procedures, i was having terrible trouble urinating, and the nurses gave me an hour to pee or else they were going to reinsert the catheter with only a small dose of local anesthesia. how’s that for pressure? i was terrified of the possibility but struggled in vain. my parents and kathryn gathered at my bedside and began to sing songs about water. the beatles’ rain. the melodians’ rivers of babylon. did they sing row row row your boat? perhaps. i seem to remember the song that finally helped me fill that small plastic urinal was jimi hendrix’s may this be love [aka waterfall - sorry, the best clip i could find was daniel lanois' cover - still worth a listen]. hopefully i won’t need another making-water medley.

my surgeon is mostly sure that he can perform the procedure laparoscopically, though there’s a chance that my attempted bowel surgery a couple years back left behind scar tissue that could interfere. if the robots can’t find a way in, they’ll have to make a midline incision (don’t worry, the link just goes to a graph – but you can always image search it yourself if you’re feeling gruesome). i’d like to avoid the larger incision, obviously – getting opened up that way would dramatically increase my healing time as well as the amount of pain i’d suffer. when i wake up, tubed through various orifices, i’ll find out immediately what access strategy my surgical team utilized.

in the meantime, i’m doing my best to enjoy myself and stay as healthy as possible. i’ve started seeing a chiropractor whose office also offers massage and physical therapy in a single visit – even though their office is in midtown, it’s worth the trip. the physical therapy in particular is making a big difference in reducing my pain and increasing my flexibility and range of motion – the many surgeries to my left leg have made it markedly shorter than my right, causing all kinds of imbalance and pain. we’re working together to try and straighten me out again. i’ve also found an acupuncturist – i emailed him with my sob story and billy, quite generously, offered to see me for free, for as long as it’s helpful. generosity like that is so rare, and i’m incredibly touched that he is so willing to help out. if you’re looking for a brooklyn-based acupuncturist, billy is great! i doubt i’ll be able to stomach (ha!) the effort necessary for any of those treatments post-surgery, so i’ve got a busy week trying to cram it all in before friday.

my acupuncturist is not the only person for whom i am grateful – i’ve received so many heartfelt messages of support, donations and books to read and offers of visits, blenders and baby food cookbooks. kathryn found a site that automates the process of scheduling meals and visits for those in need (aka me!), and i’ll let you all know when i have it set up. i know it’s a less personal method of managing the ways that you can help, but man, you all love me so much! it’s helpful to be able to space out your support and not burden me or kathryn with constant planning. i know you all understand.

one last thing, if you’re still reading this over-long post: mother’s day has come and gone, but i want to take a quick moment to acknowledge moms. and not only my wonderful, dedicated mom, because she is the best – she’s coming to help out and hopefully get me home from the hospital after the weekend. but now, being in my early 30s, so many of my friends and peers have become mothers, and it is such a marvelous joy to see these young mothers, to celebrate with them, to be a part of their lives whenever possible. i would love to spend the summer traveling from family to family across the country – seeing beloved friends and their children i have yet to meet, dash in the tower especially; seeing godsisters and godchildren and nieces named mabel; the twins in arcata; babies in oakland, omak, charleston, austin. kathryn and i have had to delay our family planning plans; i have to be a full year free of any treatment before we think about it, and even then it’s more than likely that i’ve been sterilized by the years of chemical onslaught – i’m so grateful that my oncologist suggested a visit to a sperm bank before i started any treatment. in the meantime, it gives me such pleasure to join with you in celebrating the miracle that so many of you have brought into the world. well done, mothers of the world.

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Posted in amazing, chemotherapy, events, gratitude, hospital visits, images, links, love, music, pain, physical therapy, rock and/or roll, videos | 3 Comments »

no protein. no vaccine.

Friday, March 30th, 2012

today is not my favorite day.

the sun may be shining, the birds chirping, the soft spring air rustling through the freshly budding trees.

all fine and good and welcome, even after our new york non-winter.

but late this afternoon i missed a call from my oncology team. their message was not good news.

it turns out, after all these weeks of waiting, that my body does not excrete the NY-ES-01 protein. so the vaccine won’t work.

so, on to our new plan:

yervoy, aka ipilimumab.

the drug is FDA-approved for treatment of advanced melanoma, and has shown great promise. patients with bodies riddled with metastases have, after a single infusion, shown a remarkable – miraculous, really – response. tumors haven’t just slowed; they’ve completed disappeared. even patients who didn’t react quite so dramatically have made great progress against their extremely advanced disease.

which sounds great. and i should be optimistic, and i am.

however.

yervoy is extremely toxic, and the range of side effects is startling and unappealing, to say the least. it’s especially problematic that the drug is extraordinarily destructive to the liver – and since i already have hepatitis C, i will be at significant risk of liver failure.

also known as death.

though i’m hesitant to share this with you, it’s pressing heavily on me and it always helps to name one’s fears. here are the possible side effects of yervoy:

  • Inflammation of the intestines(colitis) that can cause tears or holes (perforation) in the intestines. Signs and symptoms of colitis may include:
    • diarrhea (loose stools) or more bowel movements than usual
    • blood in your stools or dark, tarry, sticky stools
    • stomach pain (abdominal pain) or tenderness
  • Inflammation of the liver(hepatitis) that can lead to liver failure. Signs and symptoms of hepatitis may include:
    • yellowing of your skin or the whites of your eyes
    • dark urine (tea colored)
    • nausea or vomiting
    • pain on the right side of your stomach
    • bleeding or bruise more easily than normal
  • Inflammation of the skinthat can lead to severe skin reaction (toxic epidermal necrolysis). Signs and symptoms of severe skin reactions may include:
    • skin rash with or without itching
    • sores in your mouth
    • your skin blisters and/or peels
  • Inflammation of the nervesthat can lead to paralysis. Symptoms of nerve problems may include:
    • unusual weakness of legs, arms, or face
    • numbness or tingling in hands or feet
  • Inflammation of hormone glands(especially the pituitary, adrenal, and thyroid glands) that may affect how these glands work. Signs and symptoms that your glands are not working properly may include:
    • persistent or unusual headaches
    • unusual sluggishness, feeling cold all the time, or weight gain
    • changes in mood or behavior such as decreased sex drive, irritability, or forgetfulness
    • dizziness or fainting
  • Inflammation of the eyes. Symptoms may include:
    • blurry vision, double vision, or other vision problems
    • eye pain or redness
my word that sounds horrible.

please know that although this post is filled (reasonably so) with awful-sounding side effects, along with great bitterness and disappointment, that my frustration is not overwhelming, and kathryn and i are doing alright. this is an unfortunate turn of events, but at least there are still options available to us – if i was at this point ten, or even five years ago, i would be out of options, save for more toxic (and not especially effective) chemotherapy or even intestinal resection (taking out a foot or two). next month marks a full four years since my diagnosis. i have already beaten the odds again and again, and i will continue to do whatever it takes to continue.

i don’t think i’ve shared with you the final tally of your generous donations towards my medical expenses: in the end, i tallied over five thousand dollars from over 100 individual donors. incredible. i mention this because your gifts are so very appreciated, in particular at a time like this. i presently have a zero balance due, and i honestly cannot remember the last time that was the case; it has been at least a year, if not two, that i didn’t have a stack of overdue bills hanging over me.

but your financial generosity is so much more than that – though five thousand dollars is an astounding amount for a casual asking. i know i’ve thanked you many times before: here, in conversation, wherever i see you, whenever i find the time to say or send a proper thanks. kathryn and i could not manage this without you.

it is a rare gift to see so clearly the love that comes from all corners; if there is a blessing in this unceasing, unyielding battle, it is to feel so strongly the palpable love and caring of the community around me, always present whether near or far. there is no dollar amount equal to that knowledge. and the knowing allows me to read through that sickening list above without completely breaking down. i know that even if the worst of the side effects should plague me, that you will be at my side through it all.

and for that i am eternally grateful.

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Posted in chemotherapy, clinical trials, complaining, gifts, gratitude, loss, love, melanoma, pain, sadness, skin cancer | 5 Comments »

lanes.

Tuesday, August 16th, 2011

so: the day after. getting crappy scan results is always tough to absorb. thank you all for your comments, emails, facebook posts, etc. your love is tangible and i really do feel it coming from across the country. it makes a difference. it makes me stronger. it makes me want to hug you all.

in one of my conversations with forrest church before he lost his battle with cancer, we talked about the communal burden of living with disease. it doesn’t just affect the patient, though obviously we bear the brunt of cancer’s path of destruction; it is the family, the friends, the community, those of you who walk this path with me – at times like this, it can feel as if you all have cancer too. thankfully, that’s not the case. still, i know, even as you all offer words of support and love, that it is not easy to bear witness. i’ve seen the reactions in your eyes, the faces of frustration and despair. i’m so glad that you’re all with me, but i wish this journey didn’t involve so much collective pain and torment.

so: in regards to this newest development, i want to make an important point – this new treatment is quite similar to the drug i’ve been taking since last september. whereas the old drug, a MEK inhibitor, blocked one of the protein uptake channels in melanoma cells, the BRAF inhibitor does the same, but with the RAF uptake channel. want to know more? check out the BRAF wiki. mostly i find the deep science overwhelming, but i think i get the essentials. and i know it does what it is supposed to do.

the lesson to take away, then, is that things will continue on, mostly the same. the rash and acne will get better, which is nice. the most common side effects, though, are the development of basal cell and squamous cell carcinomas – early stage skin cancers that are easily removed. so we (me and my new dermatologist) will keep a close eye on that, and it’s likely we’ll have to do some cherry-picking now and then. still, nothing i can’t handle.

also: i don’t need any dramatic, life-altering surgeries – there will be no contests to decorate any hideous scars. i have to admit that was pretty freakin amazingly super awesome.

and also: there will be no sickening, nausea-inducing chemo, no depressive infusions, no bathing the abdominal cavity in heated chemotherapy. (ew.)

the biggest downer, then, is the loss of the coming february, and the ensuing celebration i was planning. if i’d scanned clean until then, my doc would have declared me finished with the trial, and i would’ve had a break from all treatment. that would have been nice. it seemed a realistic target, to have a moment, a week or two, or even a few months of closure. but it was not to be.

remarkably, i’ve found an eloquent graphic expression of the cancer survival experience. some of you probably know the webcomic xkcd – it’s super nerdy. i think the artist knows someone going through cancer treatment – hence the recent strip. i know it’s small – click to embiggen in a new window – you’ll want to zoom in a bit too. you can also download the image here.

to quote the comic: “man. fuck cancer.”

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Posted in cartoons, chemotherapy, clinical trials, gratitude, love, melanoma, pain, philosophizing, radiation, skin cancer | 7 Comments »

Two years is nothing when you’re 30.

Wednesday, June 8th, 2011

well, i’m still anemic. and it’s m-f-ing hot today. which means i’m tired and weak and i’m feeling all of the 90+ degrees that are shimmering down on us. my anemia is bad enough that my drug is still on hold. but: it’s still working, and working well.

speaking of my drugs, check it out: my doctor is in the times! she’s quoted as saying, in regards to the two years that effective treatment can extend our lives: “Two years is nothing when you’re 30.” i think that’s about me! pretty sure anyways. click on the title for pics and mind-bottling graphic representations of the healing power of this new class of drugs.

Drugs Show Promise Slowing Advanced Melanoma

By 
CHICAGO — Two new drugs have been found to prolong the lives of people with advanced melanoma, representing what researchers say is notable progress against the deadly skin cancer after decades of futility.
The drugs represent success in two new approaches to combating cancer: one by attacking a specific genetic mutation that accelerates tumor growth; the other by unleashing the body’s immune system to fight the disease

“This is an unprecedented time of celebration for our patients,” Dr. Lynn M. Schuchter, a melanoma specialist at the University of Pennsylvania, told reporters Sunday in Chicago at the annual meeting of the American Society of Clinical Oncology, where the results were presented.

The drugs do not cure melanoma, except perhaps in rare cases. But experts said they might add two to several months to the expected lifespans of people with advanced melanoma. Right now people with metastatic melanoma — meaning it has spread to distant organs — typically live 6 to 10 months.

In one trial, 84 percent of patients taking the experimental drug vemurafenib (pronounced vem-yoo-RAF-en-ib) were still alive after six months, compared with 64 percent of those getting an older chemotherapy drug, dacarbazine. Using another statistical measure, the risk of dying was reduced 63 percent.

The effect was so marked that the trial was stopped early for ethical reasons, so that patients in the control group could be offered the new drug. Because of that, researchers do not yet know the median survival.

“You don’t need to wait for 50 percent of 675 patients to die to conclude that one drug is much better than the other,” said Dr. Antoni Ribas of the University of California, Los Angeles, who was an investigator in the trial and has been a consultant to the developer of the drug.

The other new drug, ipilimumab (pronounced ip-ee-LIM-yoo-mab), when combined with dacarbazine, extended median survival to 11.2 months compared with 9.1 months for those who received dacarbazine alone. After three years, 20.8 percent of those who got that new drug were alive, compared with 12.2 percent of those in the control group.

The results of both trials were published online by The New England Journal of Medicine in addition to being presented here.

To be sure, more than half of patients with metastatic melanoma would not be helped all that much by either drug. Experts say more needs to be done, especially since melanoma affects more young adults than many other types of cancer.

Even if the new drugs allow patients with metastatic melanoma to live two years, “Two years is nothing when you’re 30,” said Dr. Anna C. Pavlick, head of the melanoma program at New York University.

Still, doctors and patient groups welcomed the progress because until now treatment of melanoma that had spread beyond the skin to distant organs “was terrible even by routine cancer standards,” said Dr. Vernon K. Sondak, chairman of cutaneous oncology at the Moffitt Cancer Center in Tampa, Fla.

Also, the number of melanoma cases has been rising, unlike for many other types of cancer. Doctors say that is because of unprotected sun exposure years ago, the proliferation of tanning salons and perhaps more attention to detecting the disease.

There were about 68,000 new cases of melanoma and about 8,700 deaths last year in the United States, up from 48,000 cases and 7,700 deaths in 2000, according to the American Cancer Society. Particularly fast increases have occurred among people older than 65 and among women 15 to 39 years old.

Vemurafenib is the latest so-called targeted therapy, which inhibits the effects of genetic mutations that spur tumor growth and spread. In particular, the drug counters the effect of a mutation in a gene called B-RAF that was discovered in 2002 to be common in melanomas. (The drug’s name comes from V600E mutation in RAF.)

The drug, which is taken orally twice a day, would be used only by the roughly half of melanoma patients whose tumors have this mutation. The drug significantly shrinks tumors in about half of these patients — or about a quarter of all melanoma patients.

It was developed by Roche and Plexxikon, a biotechnology company in Berkeley, Calif., that was recently acquired by Daiichi Sankyo of Japan. The drug is expected to be approved by the Food and Drug Administration within a few months.

Ipilimumab, the other new drug, releases a brake on the body’s immune system, allowing it to more effectively attack the tumor. Developed by Bristol-Myers Squibb, it was approved in March and is sold under the name Yervoy.

A series of articles in The New York Times last year followed the development of vemurafenib, then known as PLX4032, and recounted how some patients close to death seemed to make miraculous recoveries.

The effect, however, typically lasts only about seven months before the cancer starts to grow again, though some patients benefit for more than two years.

S. Taylor Chance, a 67-year-old real estate agent in Rancho Cucamonga, Calif., has been taking vemurafenib in a clinical trial since March 2010. “If it weren’t for the trial I wouldn’t be here,” she said.

It has not been all good. Ms. Chance 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.’ ” But she had her dose reduced and took other medications for the pain.

In the trial, sponsored by Roche and led by Dr. Paul B. Chapman of the Memorial Sloan-Kettering Cancer Center in New York, 38 percent of participants had to stop taking the drug or lower the dose because of side effects, including rash and joint pain. Many patients get minor skin cancers that can be removed by dermatologists.

The trial of ipilimumab, paid for by Bristol-Myers, involved 502 patients with late-stage melanoma.

Last year at this conference, researchers presented results of a trial showing a survival advantage for patients who had undergone a previous treatment. The new trial of this drug, by contrast, involved patients who were getting treated for the first time.

While the extension of median survival of two months, from about 9 months to about 11 months, was less than some experts expected, researchers said the real benefit was that a small number of patients, perhaps 10 to 20 percent, could live a long time.

Because it unleashes the immune system, ipilimumab can have serious side effects. In the latest trial, a big one was liver damage.

A course of treatment of ipilimumab costs $120,000. The price of vemurafenib has not been announced, but is expected to be at least tens of thousands of dollars per year.

Doctors are eager to try the two drugs together. Roche and Bristol-Myers said Thursday that they would conduct such tests.

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Posted in chemotherapy, clinical trials, gratitude, links, melanoma, pain, radiation, skin cancer | Comments Off

two years.

Thursday, May 20th, 2010

last night my wife and i celebrated the two year anniversary of our relationship. i’ve got to say that celebrating at the new location of hecho en dumbo (no longer in dumbo) was a special treat – we truly received the royal treatment! and good god the food and drinks are amazing.

what a roller coaster these two years have been. i don’t know what i would have done without her. my friends and family have been endlessly supportive, but at the core of it all has been kathryn.

kathryn as miss fortune

on our third date, i brought her flowers. and i told her that my cancer had spread, that my chances of survival were slim and that it didn’t seem fair to start a relationship in that state. i don’t care, she said. i’m with you one hundred percent. as my late friend in tanzania used to say: tukopamoja msili mia mia moja – togetherness, we are, one hundred percent.

she was there, on our fourth date, at the hospital, to meet my parents for the first time as i watched through lidded morphine eyes. she kissed me goodbye and i said “kissing you makes me want to throw up.” i was not feeling very well. and then, as she walked away, i told her for the first time that i loved her. what does an admission of love mean when morphine is involved?

she was there as i crutched and caned my way through this not especially disability-friendly city on my surgically destroyed legs.

she was there when the tube draining lymph out of my groin popped out and a kool-aid-like red-orange fluid spurted out of my body.

she was there when that hole was sewn shut and the fluid swelled inside me like an alien baby growing on my hip; she was there as the fluid was lanced again, and again, and again.

she was there when a bout of cellulitis brought on a fever that spiked 106 and they laid me on a bed of ice to prevent brain damage.

she was there for every single infusion of chemotherapy, and she was there as i tossed and turned every night afterwards, the evil, panic-inducing steroids coursing through my system, preventing me from any kind of rest, day or night.

she was there for all seven of my inpatient hospital overnights, for the 5 am shots of heparin to the belly, for the tortuous hours with my abusive roommate who eventually required a mediation team to prevent him from making any other nurses cry.

she was there for the hours of bowel-cleansing horror that is colonoscopy prep – actually, she wasn’t there for that. which was a good thing. but she was there for the endoscopies, upper and lower and the one with the robotic, strobe-lit camera pill.

she was there for the days between my scans and the results, the waiting periods full of uncertainty and terror.

she was there for month after month of bad news, watching helplessly beside me as my cancer meandered on its deadly course through my fragile body.

she was there for every moment of pain and doubt, every moment of weakness and fear.

and she was there, and continues to be there, as we celebrate my reprieve from treatment.

after my mom met kathryn, she said i was a fool if i let someone so special get away.

mom: i’m glad i took your advice.

tukopamoja msili mia mia moja.

milele. forever.

Posted in chemotherapy, hospital visits, images, melanoma, pain | 7 Comments »

misogi

Monday, January 4th, 2010

welcome to 2010, my friends! i am disappointed that we do not have flying cars and that roy scheider is dead and not living on the moon. but the year still has much to offer, i think.

for the moment, i am still reveling in memories of the long weekend’s revelry. i have three days left of this six week cycle of chemo and am really feeling it – fatigue, nausea etc… i am so glad to be working part time right now. but it takes the edge off quite a bit having started the new year in such a glorious fashion. partying upstate with some of my closest friends is about as good as it gets! hope you all had a marvelous time celebrating the new year.

i am feeling particularly cleansed after my new year’s day misogi, or ritual purification by waterfall. someone has a video of my icy plunge but this picture will have to do for now.

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Posted in chemotherapy, events, images | 1 Comment »

vacation!

Wednesday, December 23rd, 2009

i’m off to north carolina in the morning! i can’t wait. it’s odd to think about a christmas away from my family, but luckily kathryn’s family is awesome. and so are the mountains above asheville!

in preparation for the holiday, i finally, after years of living in wintry climes, finally, finally, finally got a good winter jacket. it’s made by spiewak, a brooklyn-based company that since world war one has made uniforms for soldiers, police officers, firepeople and more. click here for an amazing interactive graphic timeline of their history. merry christmas to me! i think i deserve it, don’t you?

i hope you all have a marvelous holiday! thank you as always for your support.

and here is the spiewak pearson duffle. just like paddington bear!

spiewak pearson duffle

 

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Posted in advertising, chemotherapy, travel | 2 Comments »

home. sick. again.

Monday, December 7th, 2009

it’s been over a year of chemo now. so done. home today with nausea. this got old a long time ago.

in other news, i saw fantastic mr. fox this weekend and it was AWESOME. go see it.

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minnesota

Tuesday, December 1st, 2009

what an amazing trip home. a perfect distraction from the stress of the last few weeks.

where do i begin? how about with the food:

lentil soup with jalapeño cornbread, morel and sage ravioli, gumbo, mole; starting our days with strada, crepes with berries, fresh lox. we went out only once, to a fantastic experimental vietnamese restaurant in st. paul. rabbit dumplings anyone?

that doesn’t even cover thanksgiving, which included all the traditional fixings made awesomely delicious by my parents’ extraordinary cooking skills.

speaking of cooking, i was hoping to spend the evening catching up with friends and writing a nice long post tonight. but then i came home to a dead freezer. so i’ve spent my night buying a new fridge. which actually is pretty exciting.

beyond the meals: the coziness of home, walking the dog to the river, the watching of classic movies and amazing theater (since i’m in north carolina for christmas this year, we celebrated a little early), the drinks with friends (OMG i had a drink with sara jane olson! from the symbionese liberation army! for reals!!!).

but one tradition that has become one of my favorite holiday rituals is the singing party we host on the friday after thanksgiving. it’s such a rewarding experience year after year but this one was a particular highlight for me – in large part because i was in the midst of a horrible manic episode caused by a drug reaction last year and couldn’t enjoy it – but also because the quality of the music and balance of the night were so excellent. there was time to catch up with old friends, time for a glass or two of wine, time for songs, endless songs. hilarious songs. moving songs. classic songs. songs from musicals. songs from other musicals which i may or may not know every single word of, and which, evidently, must be performed while combing through the hair of your sibling with a fork (thanks hannah).

most importantly, the trip was a way for kathryn to finally get a chance to get to know the twin cities, minus a few key folks. and it was a chance to see my loving and beloved family (and the extended twin cities version) that continues to support me as the chemo sets in again.

i hate chemo. but i love music, and i love my family. and that’s enough.

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Posted in chemotherapy, music, travel | 1 Comment »

the latest.

Wednesday, November 25th, 2009

it has been a long day. my headaches are somewhat better, but given their intensity and lasting strength, we followed through with a brain MRI tonight. as many of you know, an MRI is not exactly the best thing when you have a headache. for a taste, follow this link. turn up your computer to maximum volume. take your speakers and place them over both ears. now click play on those mp3s. fun!

i am tired of this. the thanksgiving holiday is well timed. i could use some family love.

according to the chest MRI from last week, the tumor on my shoulder is more than 4 cm across, and is deeply embedded in my pectoral muscle. removing it could potentially inflict significant damage on both my shoulder and right arm, and because of its size, the marginal incision that could potentially guarantee a disease-free area is simply not possible. so we turn again to temodar, the oral chemotherapy that was so effective in managing the skin-level tumors last year. we’re combining the temodar with PABA, a B vitamin supplement that you may have heard of from its removal from sunscreens (as in PABA-free). it turns out PABA can be of great help in dealing with solid tumors when combined with chemotherapy.

i am exhausted by this long, tiresome battle. the trial from which i was rejected seemed like it would be a magical cure, which it never really was, but being rejected stung just the same. and now to return to a drug that worked – yet still allowed the buildup of gastrointestinal tumors – is not the dramatic answer that i was hoping for.

but it is what we have, and i’m looking towards the holiday with my aching head held high. even as i feel utterly spent, i recognize that i (and we) have much to be thankful for.

enjoy your turkey!

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Posted in chemotherapy | 7 Comments »

oncological genetics

Wednesday, September 23rd, 2009

more chemo today. but if all goes well, i’ll have just a single dose left after this one. that feels nice. for the first time, i took advantage of the free massages offered during infusions. i completely fell asleep! that felt nice too.

if this chemo continues working as expected, the research in this BBC article shouldn’t matter. but it’s still very encouraging! this is part of the genetic study (related to the BRAF gene) at Memorial Sloan-Kettering that i’m working on getting into if necessary. it seems like every day there’s a new study that is going to change everything about cancer research. but this one is particularly interesting, and not just because it’s focused on melanoma. it looks like this could be real progress:

“The news would transform melanoma work into ‘a very exciting field instead of a graveyard’, he said.”

Hope over new skin cancer therapy

By Pallab Ghosh
Science correspondent, BBC News

Dentist Mikhail Lvovsky describes his part in the trial of a new skin cancer drug

Scientists have presented results of an experimental new drug which in early stage trials has significantly shrunk skin cancer tumours.

US rearchers from Memorial Sloan-Kettering Hospital in New York said their results were “unprecedented”.

While not a cure, the study of 31 patients with late-stage skin cancer suggested the therapy could improve the quality of life and extend lifespan.

Larger scale trials will now be needed to test the drug, PLX4032, further.

In the study, which has been unveiled at a major cancer conference in Berlin, researchers treated patients where cancer had spread throughout their system.

We’ve seen responses in patients who didn’t respond to chemotherapy before
Dr Paul Chapman, lead researcher

They were given a new drug that blocks the activity of a gene thought to be involved in the spread of skin cancer, the so-called BRAF gene.

Within two weeks they noticed what they described as a “rapid and dramatic” shrinking of the tumours in the cancer patients:

Lead researcher Dr Paul Chapman said: “We’ve seen responses in patients who didn’t respond to chemotherapy before. So far 70 per cent of patients have responded. So that is unprecedented for us.”

New treatments can often seem promising to begin with – but have disappointing results in later larger trials.

However, the doctors involved in the trial – and those at the European Cancer Organisation who have organised the conference – have never seen a cancer drug act so quickly on such a high proportion of patients.

SKIN CANCERS: THE FACTS
Generic cancer graphic

The drug, PLX4032, is the latest in a new generation of cancer drugs that block the action of cancer causing genes.

The most successful of these so far has been Glivec (imatinib), which is used to treat myloid Leukaemia and gastric cancer.

Professor Alexander Eggermont, president of the European Cancer Organisation, said: “The new drug is the equivalent of Glivec in terms of the effect it’s having in advanced melanoma.”

‘It’s fantastic’

One of those to receive the treatment was Mikhail Lvovsky, a dentist from New York.

A year ago he stopped work because he was so ill. He asked his doctor to take him off his previous medication because he could not bear the side effects. Now six months after taking the new drug he is back at work.

He said: “The first thing I did six months ago was to call the funeral director and pay for my funeral. Now I’m thinking of going back to work. It’s beyond exciting. It’s fantastic.”

Dr Lvovsky’s cancer is so serious it is unlikely for the new treatment to hold it back for very much longer longer.

But if the drug is shown to be effective in larger trials it has the potential to help people whose cancer is less advanced to live healthier and longer lives.

Alexander Eggermont, president of the European Cancer Organisation, described the trial as “simply spectacular”.

He said it showed the benefits of targeting treatment.

The news would transform melanoma work into “a very exciting field instead of a graveyard”, he said.

Dr Toby Chave, a consultant dermatologist at Derriford hospital in Plymouth, said: “Up to this point advanced melanoma has been extremely difficult to treat and does not respond well to any existing chemotherapy or radiotherapy.

“Prognosis is very poor. The new study shows that there is some response to the treatment which is very encouraging. Even giving patients the hope of a few extra months of life is significant for them.”

However Dr Chave stressed that the new treatment was not a cure.

He added: “Any hope of long-term cure for advanced melanoma is still a long way off.”

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Posted in chemotherapy, melanoma, skin cancer | 1 Comment »

email update

Wednesday, September 2nd, 2009

So I thought I would post the latest update here, since not everyone who checks in with groinstrong is on my email list. The sign-up widget is broken right now – if you’d like an occasional status update email, let me know at jonah (dot) ei (at) gmail (dot com).

It gives me great pleasure to share some positive news with all of you. My optimism is tempered knowing that there are many who continue to struggle with their own health battles – I hope that the prayers and love that have helped sustain me will find their way to those who need it now.

Here’s the latest: an endoscopy on Monday showed that the original lesion in my stomach was gone, leaving a small, manageable ulcer in its place. I’m not sure I can adequately express the magnitude of that change – solid melanoma tumors rarely respond effectively to chemotherapy. The fact that the largest known spot has completely disappeared bodes well for the fate of the known intestinal lesions as well as any potential unknown sites.

The endoscopy also showed a suspicious black dot, and over the past year-plus, most of my suspicious dots have turned out to be more cancer. New growth during chemo would not be a good thing, and I headed to the doctor today prepared for the worst, whatever that might be. The biopsy results came back negative.

So that means the chemotherapy is working, and working well. I received another infusion this afternoon and have just two doses remaining. In six weeks, after those treatments, we’ll do another endoscopy. If that is clean, we’ll get the pill camera ready for its trip through innerspace and perform whatever other scans we think might give us a better view. And if those all show up clean, then I will officially be in remission. I should know by the end of October.

The past year has been one hell of a roller coaster ride and I could not imagine getting through this without you. Thank you for continuing to be present in this exhausting struggle, for reading Groinstrong, for sending your love in comments, emails, cards, calls; whatever forms love can take. I know that I am blessed with the support of a caring community, one that sometimes cares from afar or remains anonymous. Your prayers and positive thoughts are heard and felt every day and are returned in kind.

Thank you for celebrating this encouraging development with me. I hope you all have a marvelous holiday weekend!

Much Love.

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Posted in chemotherapy | 14 Comments »

chemo and studies and happiness

Wednesday, August 12th, 2009

just finished the third round of chemo last night. i’m feeling a little beaten up after a week of a dozen different medications and a handful of hospital visits to deal with this strange allergic reaction. i got a long regimen of blood tests yesterday and will hopefully have some answers soon.

i should also have more important answers by the end of the month – i just got my next endoscopy scheduled for august 31st. we’re hoping that we’ll be able to get a good look at the spot inside my stomach and see how it’s doing. i have less reflux and discomfort these days, so my crew is optimistic that the carboplatin is doing its job.

we’re already preparing for the next phase if not. i’m moving forward with two genetic studies that are cooperatively managed by NYU,  Memorial Sloan Kettering and others. they both depend on a specific genetic makeup to take part in either, so we’re still waiting to see what my pathology slides contain. if you’re interested in the science of it, here’s some information on the phase II trial for imatinib mesylate and early results of a BRAF blocker study.

much love to the baker vanek family as they celebrate with their son aaron – three years clean post-cancer! way to go guys! you can celebrate with them here.

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Posted in chemotherapy, general updates | 1 Comment »

the just-emailed update

Wednesday, July 22nd, 2009

Dear Friends,

I hope you’re all enjoying your summers, wherever you may be! I’m just back from a long yoga class in which we focused on accepting love from those around you. If you’re wondering – yes, I can feel it coming in constantly from all corners. Thank you so much for your continued support and prayers.

And thank you as well for the early birthday presents! It’s hard to believe that I have four more days in my twenties. Turning 30 was a lot scarier a couple years ago, before I learned what scary meant. And I get to celebrate my birthday in glorious Crested Butte, Colorado with my lovely partner and my parents. It’s my first real vacation in a year and is much-needed.

This morning I had my second dose of IV chemotherapy, which I receive every three weeks. It takes a few days to sink in, so the side effects will probably be pretty rough on Friday, when I fly to Colorado. I’ll definitely be heavily medicated with the various anti-nausea regimens at my disposal. Today I also began my voluntary involvement in a detailed study of the effects of my chemotherapy, which meant a long battery of tests including plucking out hair follicles and a skin biopsy behind my ear that needed to be stitched closed, though the lidocaine shots hurt far worse than the stitches and hair pulling.  I return to the doctor tomorrow and Thursday to repeat the tests – by Thursday afternoon I’ll have three different stitched-up biopsy sites.  I’m second guessing my decision to participate in the study but if it helps future recipients I suppose it’s a good thing.

The side effects from the first treatment really knocked me down, but I think much of it was due to the low dosage steroids, which triggered tremendous anxiety and prevented me from sleeping for a week – not surprisingly, that combined with generally not feeling great made it awfully difficult to work effectively. I’m going to try to tough it out without the steroids this time, because that was awful. I’ve been seeing a social worker at Cancer Care, a free cancer support organization, and that has been extraordinarily helpful in dealing with the anxiety, fear and depression which are all part of this long, exhausting battle.

Luckily the side effects don’t last the full three weeks between infusions. It’s good to know that I don’t have long to wait before finding out if we’re making progress against the disease – we should get a good idea with another endoscopy after the next treatment in mid-August. Obviously I’m hoping for positive news – knowing that it’s helping makes dealing with chemotherapy a whole lot easier.

I hear some of you are still having trouble with the Groinstrong site crashing computers and loading suspicious popup windows. Sorry that it’s giving you problems! I recommend clearing your cache and cookies before loading, but the best advice I can give you is to use a browser other than Internet Explorer, which seems to be the only browser that continues to have trouble.

Whew! That’s a long one – lots of information to share this time. Thanks for reading! For those of you in New York (or Boston, Trina!), I’ll be celebrating my birthday post-vacation with a big dance party August 15th, so mark your calendars!

Much Love to you all!

Jonah

Posted in chemotherapy, complaining | 4 Comments »

the fourth

Sunday, July 5th, 2009

i had a lovely weekend, thanks for asking! i hope your holiday was awesome and firework-y. the chemo is starting to kick my butt a bit but i’m resting up and saving my energy for the week.

my newly new york-ed cousin sent this update out to my family and gave me permission to make it public. i thought it would be nice for people to see. to see how important kathryn is to me, to see a side of things that i may not always write about. enjoy.

I had lunch with Jonah on Wednesday. His ability to appear without pain is impressive. His new and increased nausea and stomach pains have, according to him, made him much more aware and present because, for the first time since he was diagnosed, it is his illness and not his medications that are causing him unrest and discomfort. He is hopeful about his new chemotherapy treatment, and confident that he will not lose his hair (though according to his website, some of his loyal friends have already shaved their domes in support). He and I didn’t spend too much time talking about his illness to be honest, and that’s why it was so strangely refreshing to see him.

All that we hear from Jonah, through third, and sometimes fourth person knowledge is what is going on with Jonah’s cancer. Admittedly, when I was on my way to see him, I expected to find either a weakened and defeated version of the cousin I once knew, or a falsely contented, cancer-ignoring person who wanted to act and feel like there was nothing wrong. What I found instead was a very happy and in-love Jonah.

The difference that Kathryn has made in his life is obvious to those who see him when he is with her, but it is the way he feels and where his thoughts are when she is not around that, in my opinion, have made the biggest difference in him. The universe seems to want to send rain clouds Jonah’s way, but Kathryn provides him with the constant ray of sunshine he needs to keep a smile on his face. When he could be thinking about impending doom and ruminating over failed attempts to sign up for experimental chemotherapy trials, his thoughts instead are of Kathryn’s lovely neckline (we stopped in a jewelry store on a whim and he bought her a beautiful necklace that was too inexpensive for him to pass on). The impact she has on his day-to-day life is nothing less than profound.

When Jonah left me at the transit museum to go do some shopping I couldn’t help but feel awful that we all think of him as being sick. Jonah is sick, yes, he’s constantly reminded of that fact, and he is handling his illness as responsibly as possible, but besides being sick, perhaps even more important than the fact that he’s sick, is the fact that he is unquestionably in love, and he is undeniably happy. Kathryn has been better for him than any doctor or radiation or medication; if you could just see his face when he talks about her that would be astonishingly apparent.

– “A life is not important except in the impact it has on others”

(Jonah, the quote at the end is my gmail signoff- the one that comes at the end of every one of my emails. It seemed important to me that this Jackie Robinson quote be a part of the original message… as it was when I sent out the original email. I can’t think of a better example of how important we all can be to each other than the uplifting impact Kathryn has had on you.)

Posted in chemotherapy | 2 Comments »

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