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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 »

scan results today!

Wednesday, June 20th, 2012

a few years back i posted a tony hoagland poem, “medicine.” i love tony’s poetry and am grateful to brian newhouse for gifting me one of his books. the poet and his mother both have dealt with crippling illness, so he knows from whence he speaks when he says:

Daydreaming comes easy to the ill:
slowed down to the speed of waiting rooms,
you learn to hang suspended in the wallpaper,
to drift among the magazines and plants,
feeling a strange love
for the time that might be killing you.

i’ve grown so accustomed to doctor’s offices, billing agents, the mountains of paperwork, byzantine insurance policies and more that i’m seriously considering volunteering as a patient support agent, sharing my now-expert knowledge of the workings of the administrative maze that comes with being chronically ill. i find it criminally negligent and offensive that the patient is responsible for overseeing significant parts of communication between care providers and insurance companies. the ill have so much more to worry about. on an average week i spend two or so hours on the phone with medical business – managing my appointments, getting approval for necessary medications and crucial care, and of course fighting bills that shouldn’t exist. i’m sure at this point that my credit rating is torn to shreds – i’ve had a number of bills (though none for awhile) go to collections, nearly all through no fault of my own. i talk to a doctor’s billing office and they say everything is fine, ignore the bills, but two months later i’ll get the mail and discover aggressive and condescending demands for payment. then i call the care provider directly and they say oh, i can’t believe that happened. that shouldn’t happen.

damn right it shouldn’t.

but i digress. this afternoon kathryn and i are headed to my oncologist to hear about the findings of my abdominal and pelvic MRIs. i tend to have a good sense of my body and if the cancer is causing problems, but at the moment i’m feeling as healthy as i have in a long time. granted, i have a mild cold, but that’s actually progress – two years ago, a cold would have sent me to the ER. i’m glad i have a cold.

so i’m not especially concerned this time around, though of course my cancer can always surprise me. i’ve previously described fighting melanoma as similar to punching jello. you attack and say, oh look, it’s gone. but then you look closer only to find that, in fact, it’s still there; it just moved around a bit. it’s remarkable, though, that since my diagnosis, treatments for melanoma have made huge leaps in extending lives and even bringing patients back from the brink of death to live long and (mostly) healthy lives. most of those drugs didn’t exist in any usable form when i had my first surgery – ten years ago, i would have been out of options in 2010. i’ve heard stories of people dying within weeks after discovering their advanced melanoma. obviously, i consider myself very, very lucky. and also obviously, i’m incredibly grateful for all of your support through all of this. i can’t say it enough: thank you.

before i sign off, i wanted to share a recap of the cancercare gala last week. i’m still basking in the satisfaction of a job well done and the remarkable response my remarks garnered – i’m meeting next week to discuss potentially working with a documentary team that’s producing a film about the history of cancer. i’ll tell you more about that after the meeting.

my appointment is at 4:30, so check back in the evening for results.

here’s the recap! there’s also a facebook gallery of photos from the evening here.

Annual Spring Gala Raises More Than $520,000 in Support of CancerCare

CancerCare CEO Helen H. Miller welcomes the evening’s guests

More than 320 guests attended CancerCare’s Annual Spring Gala this past Thursday, June 14 at The Mandarin Oriental in New York City. The event raised more than $520,000 in support of our free services for people affected by cancer.

 

Paddles up!

The evening’s festivities included both a silent and live auction featuring exclusive, one-of-a-kind items including “Best of New York City” experiences, exotic luxury getaways, designer merchandise, and gourmet food and wine packages.

Actress and advocate S. Epatha Merkerson

Actress and CancerCare advocate S. Epatha Merkerson was honored with CancerCare’s “Help & Hope” Award, which was presented by Academy Award-winning actress Whoopi Goldberg. Merkerson, best known for her role on the long-running NBC series “Law & Order,” is a longtime advocate for lung cancer research and awareness. Her “Law & Order” character, Lt. Anita Van Buren, notably faced a cervical cancer diagnosis in the drama’s final season, bringing awareness to women coping with the diagnosis.

CancerCare client Jonah Eller-Isaacs

CancerCare client Jonah Eller-Isaacs was also honored during the evening, taking the stage to deliver a moving account of how CancerCare helped him cope with a diagnosis of stage IV melanoma at age 28. Jonah said:

Every time I’ve felt overwhelmed…CancerCare has been there. They’ve done so much more than help me cope – they’ve helped me develop lasting tools to manage the heavy burden of my diagnosis. My counselor, Sarah Kelly, has taught me not only how to deal with my illness, but how to be a better, stronger version of myself.

Learn more about Jonah, and read his speech in its entirety, on Jonah’s blog, GROINSTRONG.

The evening also featured a moving video of three CancerCare clients sharing their stories of how CancerCare helped them cope with their diagnoses:

View a photo gallery from the 2012 Annual Spring Gala on our Facebook page.

CancerCare sincerely thanks all of our supporters and sponsors who helped make this year’s Gala such a success!

Whoopi Goldberg with CancerCare clients Jonah Eller-Isaacs, Paulette Kennedy, and Donna Spano

Posted in amazing, cancercare, clinical trials, complaining, events, gifts, gratitude, images, links, literature, melanoma, philosophizing, poetry, skin cancer | Comments Off

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 »

seven to ten days of more waiting.

Tuesday, March 13th, 2012

my oncology nurses called late on friday to let me know that the drug company had messed up on my sample and it would be another 7-10 days before they could release the results. it’s cool; it’s not like this is one of my last “nice” options – if i don’t get into the trial, the severity of treatments rise dramatically. yervoy (aka ipilimumab) is a possibility, but that drug is extremely tough on the liver. i signed up for the drug in trial form and it was, you may remember, the night before the trial began that my doctor called to inform me i had hepatitis C. if the NYES01 protein isn’t present, we may risk trying the drug regardless, though i’d rather not suffer liver failure. when i asked my team how hep C-positive patients responded to yervoy, they said, “we’ll have to monitor you very, very closely.” i’m going to interpret that as answering in the veiled negative.

so the waiting continues. it seems like i’m waiting for an awful lot right now – i was supposed to start a new pain management regimen to relieve the awful aches and soreness in my legs, but i’ve had a terrible time getting the drug. exalgo is a new time-release hydromorphone, which would reduce my need for fast-acting (and incredibly narcotic) pain relief every 4-6 hours. the drug is so new that it’s rarely prescribed. when i called my local (totally awesome and supportive) apothecary, they called me back and said they couldn’t afford to stock the drug – my script is for just 14 pills, to try it for a couple weeks, and the only supply available is a jar of 100 pills – that costs them $2,000. ouch. the pharmacy can’t afford to risk stocking it since it’s not used much. so i tried every pharmacy chain in manhattan (rite aid, duane reade, walgreens, CVS), plus four or five local non-chain stores, and none of them could get it, at least without a long waiting period. i ended up finding a pharmacy in long island that could overnight it to me – i ordered it on thursday and fedex hasn’t been able to catch me at home since, which is odd because i’ve been here the whole time. hopefully i’ll be able to start it soon.

in the meantime, i have my second abstract expressionist painting class tonight! i’ve talked before about how i act twice my age, what with the bridge playing and constant complaining about my aches and pains - though, if you ask kathryn, she’d say i act more like one-fifth my age. i always said i taught preschool so that i could spend time with my emotional peers! so it comes naturally to spend time at the painting class – it’s me and fifteen women, all over 50. i based my first painting on a northern minnesota sunrise that i tried to recreate from memory – the picture is below, and when i get to class i’ll take a snapshot of my completed painting now that it’s dry.

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Posted in art, clinical trials, complaining, images, melanoma, pain, skin cancer | 2 Comments »

home safe and slightly unsound

Tuesday, February 28th, 2012

that was not my favorite night ever. what ups and downs! just as i’m feeling strong and brave and confident and happy, my health tries to steal it all away. i can barely remember posting last night through the bleary haze of IV dilaudid, so i’m re-reading to see what i should cover today. i was about to say “this morning” – even though it’s 3 pm, it feels like morning after heading to bed at 7 am.

so here’s the latest. after the clean CT scan last night, dr. pavlick (just as a reminder, my oncologist) decided that an MRI wasn’t necessary. which is great, because i’ve got a migraine from lack of sleep today, and having endured MRIs with migraines before, it’s not an experience i would wish on my worst enemy. well, maybe i would wish it on my worst enemy. it’s awful.

the going theory for my dramatic, precipitous decline is a rare side effect of zyprexa, the atypical anti-psychotic drug i started as an attempt to curb my insomnia. it’s possible that i developed neuroleptic malignant syndrome, a very rare and very dangerous disorder caused by adverse reactions to that particular class of drugs. though i didn’t have the typical fevers, it would explain the severe muscle pain, stiffness, tingling and increased confusion and delirium.

and honestly, as scary as its name may be, the disorder is better than some of the alternatives that the side effects pointed to; namely, meningitis and brain metastases. given the good outlook on scans and positive outcomes with my blood tests, we’re out of the woods on those. so i got that goin’ for me. which is nice. given both my forever-compromised immune system and the breakneck speed of melanoma on the move, neither scenario would be out of the question. thus my calling the amberlance. ha! spellcheck doesn’t like my alternate spelling of ambulance. word added to dictionary!

i’ve got to head to the pharmacy to get a script filled. thank you for reading, for keeping me in your thoughts and prayers, and for all your support. the donations continue to pour in from across the country, and it was such a gift to head to the ER knowing that any charges i incurred would disappear given your generosity. if you’re able to help out with the costs of my continued care, please paypal or chase quickpay to jonah.ei@gmail.com, or email me for our mailing address. even a dollar or two here and there can communally make a huge difference for me, and my psyche, and for kathryn as well. so thank you in advance for whatever you can give.

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Posted in complaining, gifts, gratitude, hospital visits, language, love, melanoma, migraines, skin cancer, videos | 3 Comments »

to whom should i complain? (part two)

Thursday, January 5th, 2012

part two: the setting of the scene. before i get into the indignities and surreal nature of my battles to simply manage my own care, it’s important to establish where i’m at physically. also, it would probably be a good idea if you read part one below.

in the past weeks, i’ve struggled mightily with the side effects from zelboraf. there is the crushing, obliterating pain – in my hands, in my feet, on my skin, in my bones. i have endured nausea, edema, night sweats, the infuriating combination of fatigue and insomnia, and the ignominious experience of peeing all over myself and my spouse – more than once. there are skin-splitting fissures that refuse to heal and lesions that break and leak lymphatic fluid in a most delicate area. though the rash is much better, i still suffer  through painful spots on my chest and back that feel like infected acne and don’t get any better, no matter the lotion, soap or treatment. i have blisters on my hands and feet that are so painful that they regularly prevent or curtail a litany of crucial daily activities: walking, grasping door handles, turning lamplight switches, climbing up or down stairs, opening bottles and pill containers (no matter their level of childproofing), holding tightly to bars in the subway, even typing – yes, even the act of complaining about my pain causes me pain. my guitar, a source of great strength and support, is totally out of the question.

i carry a cane, though it is not necessary and can at times be a burden, especially when my hands hurt so much that i can barely grip it. but it lets the world know that i am crippled, and occasionally people are respectful, giving me ample space or a seat on the train; other times they look the other way or into their book or phone, even when i stand next to them and tap my cane and struggle to support myself as they sit oblivious in the seats set aside for people with disabilities. Or, worse, those who bump into me and shake their heads that i would dare walk so slowly; or, worse again, roughly try to push me aside or accidentally kick my cane out from my hand without a second glance. i’m not kidding.

my hair continues to abandon me. i’ve lost my eyebrows almost entirely. i have a bald spot amidst what is left of the hair on my head. last week i shaved the few remaining wisps of my beloved beard, knowing that it may never return – a week later, most of my shaved skin is still smooth and stubble-free. bathing is a constant exercise in clearing the drain, and by the end of each shower i’ve collected at least a double handful of hair. hair covers my pillow, hair falls in my food as i eat (or worse, as i cook). the hair that helps keep me warm has disappeared just as the cold of winter has finally arrived. no amount of medication can slow the drug-induced alopecia, and while i’m looking forward to an exciting array of handsome wigs (silver pompadour!!), there’s no replacing my eyelashes.

through all of these trials, i’ve done my best to stay strong and healthy and centered. but recently, when the side effects have accompanied repeated administrative, bureaucratic nonsense, my endurance, patience and positivity have been put to an infinitely difficult task. i swear, when i have some time and energy soon to share all that has gone down, you won’t believe it’s true, or that so many challenges have presented themselves to me over such a short time. sorry to keep you waiting, and i should have a chance to explain all of that very, very soon.

Posted in complaining, gifts, gratitude, love, melanoma, pain, skin cancer, weather | 9 Comments »

look who’s honoring me now!

Wednesday, October 5th, 2011

just so we’re clear, that’s a reference to one of the many megalomaniacal segments on the colbert report. i’m not nearly as self-absorbed and arrogant as colbert’s television persona. right? … right?

but i do have some friends who are honoring me, or at least thinking about me as they run like the bats out of hell that they are. as i’ve mentioned before, my friend, fellow cancer survivor and all-around badass graceann is running the new york dublin marathon to raise money for the leukemia and lymphoma society – one of the many support organizations that are absolutely crucial in keeping us “cancer crushers” (to borrow a phrase from jonny imerman) happy, financially stable and, well, alive. [correction: graceann will be running the dublin marathon. no, not the bay area suburb. dublin as in ireland. that makes it SO much cooler.]

graceann is just a few hundred dollars away from meeting her fundraising minimum, but with only two weeks to go, she’s still about $1000 short of her ultimate goal of $7,000.

i’ve seen the fundraising power of the groinstrong community – would you believe that y’all have raised over $15,000 for my medical expenses? well you have. and that’s not for a 501(c)(3) non-profit; you’ve taken no deductions for your gifts. over three-plus years, my out-of-pocket expenses have totaled more than $30,000. so you’ve paid for half of all of my bills. that’s staggering. let’s not forget, though, that without insurance, those bills would already be over $2 million dollars. seriously. i’ve counted. now that’s staggering.

so: please give to graceann’s efforts as generously as you’re able. you can visit her fundraising site is here – and be sure to watch her hilarious video ask here. don’t forget that for a donation of $50 or more, you’ll get to choose a song to play in her headphones as she pounds the new york irish pavement. i’ve requested that she bust her butt to hall and oates’ you make my dreams. god i love that video. especially the way that oates pops up close to the camera. so awesome.

but the asking is not over yet! please keep reading and clicking links and giving generously.

my new friend emily is also preparing for a run – this one is a 5K, the terry fox run for cancer research. after only a conversation or two between us, emily was generous enough to dedicate her efforts to my continuing battle against this awful disease. though her financial aspirations aren’t nearly as lofty, she’s still pushing herself and making sacrifices to help others. that pretty much makes her a badass in my book.

right now emily is just $30 short of her goal! every dollar counts when it comes to the ungodly expensive costs of cancer research – research that is very much a crucial tool in keeping me alive and healthy as we speak. so please consider giving to emily’s run as well. her fundraising page is here.

maybe you can give two matching gifts, one to each runner? that sort of philanthropy has got to pay off in the end, whether it’s in a cloud-based heavenly afterlife or a rung or two upwards on the karmic ladder. think about the long-term benefits of your generosity, whether it’s the continued funding of research or simply an expanded sense of self-worth and satisfaction. please give whatever you are able.

thank you, dear readers, for taking the time to hear about these important fundraising efforts, and thank you in advance for the support that you can provide.

a very brief update before i head to the 16th medical professional in my phone book – not an exaggeration. how crazy is that? too many doctors is a great title for a song or poem. help me remember that.

in just a moment, i’m headed to an orthopedic specialist to discuss the hairline fracture and degenerative state of my left hip. i doubt we’ll take any action beyond bone density testing – there’s very little they can do about it short of a hip transplant. and i’d rather avoid that for now. he’s actually in the same office as my knee surgeon.

after ten days back on zelboraf, the side effects are taking hold again. the itching isn’t nearly as bad this time, but my goodness this joint pain is intense. i’m on just about the maximum amount of painkillers that a human being can take without resorting to intravenous injections – we’re talking multiple daily doses of both dilaudid (3-4 times stronger than morphine) and methadone. the pain, at the moment, is in my right shoulder, both wrists, the individual joints at each knuckle on both my fingers and toes and the arches of my feet. it likes to move around from joint to joint, moving without warning. you’re familiar with the pain scale of 1 to 10, yes? i’m living at a constant 8. or even 8.5. and it’s just as unpleasant as you imagine. on top of that excruciating pain, i’m still going to physical therapy to work on my knee. luckily my therapy staff is very accommodating and understands that my pain is such that it prevents me from a significant amount of activities. so the knee continues to approve – now it’s just the rest of my body i’ve got to figure out.

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Posted in clinical trials, events, gifts, gratitude, links, melanoma, pain, physical therapy, skin cancer | Comments Off

sorry for the delay!

Monday, September 19th, 2011

when i look back at some of the early posts here, i’m amazed at the regularity of posting – four, five, seven times a day: “i’m waiting for my MRI” – “i’m halfway undressed for the MRI” – “ok we finished the MRI” – etc.

so i actually feel guilty that it’s so late in the afternoon – almost 4 pm even! – that i’m letting y’all know that i was hospitalized last night with yet another case of cellulitis (read more about this common skin infection here). this is my sixth diagnosis of cellulitis; usually i end up hospitalized, depending on the severity of the accompanying fevers and rash. over this last year, i added an infectious diseases expert to my ever-expanding medical team – she’s been a godsend, and after talking through this recent flareup, she’s decided that i should start a preemptive course of low dose daily antibiotics. a regimen of non-stop pills has its drawbacks – and i’m already at 10 medications a day.

but i’m SO done with looking down to see parts of my body bright red with inflammation, hotter by many degrees than the rest of my body, and swollen beyond recognition. and perhaps taking a daily antibiotic will help me avoid repeating my current hospital living situation – a shared *quad* room with one heavy duty snorer and one remarkably talented sleep shouter. not a sleep talker. a sleep shouter.

OHHH!!! WHAT DID YOU SAY? AAAH. WHAT DID YOU SAY??!? OHHHH MY ASS.

i think i figured out his favorite song…

Posted in complaining, hospital visits, music, pain, rock and/or roll, skin cancer | 1 Comment »

presenting: ZELBORAF!!!

Wednesday, August 17th, 2011

that is a helluva name, right? that’s the name of my new drug. sounds like a super-villain from a distant planet. beware the wrath of zelboraf!

big news this morning – it’s been FDA approved! that doesn’t really change anything for me treatment-wise, but still, nice to know that someone thinks it works.

from the above article: The most common side effects reported in patients receiving Zelboraf included joint pain, rash, hair loss, fatigue, nausea, and skin sensitivity when exposed to the sun.

wheeeee!

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Posted in clinical trials, melanoma, skin cancer, sunscreen | 3 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 »

the sunscreen smokescreen

Wednesday, July 13th, 2011

this intriguing infographic is making the rounds right now – pretty interesting stuff! it really speaks to the desperate need for more education and regulation around sunscreen, its proper use, its ingredients – i’m still shocked that the FDA has so few regulations for sunscreen, recent announcements aside.i definitely recommend taking a look at the data set for the graphic – there’s a ton of helpful information with links to studies that back up the data.

the most important advice i’m taking away is that contrary to current advice to lather up 15-30 minutes pre-sun exposure with a reapplication 2 hours later, studies demonstrate that it’s actually better to apply 15-30 minutes pre-exposure and then repeat 15-30 minutes post-exposure (obviously swimming/sweating/rubbing it all off onto your towel changes that schedule). stay pale, people!

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Posted in images, links, melanoma, skin cancer, sunscreen | 1 Comment »

finally, a little progress.

Friday, June 17th, 2011

as we discussed throughout the month of may (it being melanoma awareness month), the issue of how best to protect you and your family from the sun’s dangerous rays is complicated, rife with conflicting reports and analysis. there exists great potential for the purchase of sunscreen or alternatives that can be ultra-expensive or at times quite ineffective – and even harmful.

but now the FDA has promised to help clean up the SPF identification process and focus on the necessity of “broad spectrum” protection from both UVA and UVB rays. hopefully the labeling – which will be required by the end of next summer – will help keep sunscreen makers honest. of course the jury is still out on the long-term effects of ingredients like oxybenzone *FYI: DO NOT use sunscreens with oxybenzone on children under 2 years of age, as the enzymes necessary for breaking down the chemical have not yet developed in their tender little bodies.*

so: here’s the FDA breakdown of the new labeling system. it makes for pretty dry reading, but here’s the crucial part where they explain the new regulations:

The new final rule includes the following requirements:

  • Broad Spectrum designation. Sunscreens that pass FDA’s broad spectrum test procedure, which measures a product’s UVA protection relative to its UVB protection, may be labeled as “Broad Spectrum SPF [value]” on the front label. For Broad Spectrum sunscreens, SPF values also indicate the amount or magnitude of overall protection. Broad Spectrum SPF products with SPF values higher than 15 provide greater protection and may claim additional uses, as described in the next bullet.
  • Use claims. Only Broad Spectrum sunscreens with an SPF value of 15 or higher can claim to reduce the risk of skin cancer and early skin aging if used as directed with other sun protection measures. Non-Broad Spectrum sunscreens and Broad Spectrum sunscreens with an SPF value between 2 and 14 can only claim to help prevent sunburn.
  • “Waterproof, “sweatproof” or “sunblock” claims. Manufacturers cannot label sunscreens as “waterproof” or “sweatproof,” or identify their products as “sunblocks,” because these claims overstate their effectiveness. Sunscreens also cannot claim to provide sun protection for more than 2 hours without reapplication or to provide protection immediately after application (for example– “instant protection”) without submitting data to support these claims and obtaining FDA approval.
  • Water resistance claims. Water resistance claims on the front label must indicate whether the sunscreen remains effective for 40 minutes or 80 minutes while swimming or sweating, based on standard testing. Sunscreens that are not water resistant must include a direction instructing consumers to use a water resistant sunscreen if swimming or sweating.
  • Drug Facts. All sunscreens must include standard “Drug Facts” information on the back and/or side of the container.

of course, it’s possible that another breaking sunscreen story may have a more dramatic impact:

New Study Finds Best Sunscreen Is Layer Of Human Blood

WASHINGTON—According to a study released Monday by the Environmental Working Group, the best defense against the harmful effects of the sun’s rays is a thick coating of human blood. “We found that a generous application of human blood blocks 98 percent more UVA and UVB rays than standard SPF 30 sunscreen lotions,” said researcher Dr. Carl Lapkins, adding that while pig and chicken blood can mildly decrease the risk of skin cancer, human blood ultimately offers the most effective form of protection. “An additional layer of fresh blood should be applied for each hour spent outdoors, especially if you’re swimming. Infants, who are more vulnerable to sun exposure, should be completely submerged in a bucket of blood before going outside, and re-dunked frequently.” Lapkins added that to avoid missing a spot, one should ask for a friend’s help when spreading blood on hard-to-reach areas.

 

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Posted in links, melanoma, skin cancer, sunscreen | Comments Off

information on sun protective clothing

Thursday, June 9th, 2011

oops! the iced tea kathryn made was caffeinated. and here we are at 1:30 am. lesson learned.

after i mentioned the sun safety expo at grand central today, friend of the show (always wanted to say that) tamara chimed in with a ton of helpful advice about protective clothing – which i am not at all savvy in regards to. thanks tamara!

I’m sure you are way more savvy than I am in regards to sun protection clothing. But just in case, I thought I’d share where I shop. I mostly rely on sun clothes vs. sun screen (due to cost, effectiveness, and ease of keeping kids covered). The sun clothes are so expensive, but I’ve found in the long run, they are actually less expensive than sun screen. We use Badger sunscreen for the kiddos, and i use Soleo….both use just zinc. Thanks to you…we are the most protected family in the neighborhood! xoxoxo to you Jonah.

I get super airy/breezy/venty long sleeve shirts and kids long pants here:
http://www.sunprecautions.com/

I get cotton/zinc t-shirts for me and kids, cotton tank tops and pretty cover-ups for me, long sleeve swim shirts and long swim pants for kids, mens/women’s hats here:
http://www.coolibar.com/

I get kids hats here:
http://www.sundayafternoons.com/index.php

On-line or at REI, I’ve really liked North Face SPF pants, and Royal Robbins SPF shirts.

a note on sun clothes: they are most definitely NOT created equal. here’s a super in-depth look into sun protection clothing and UPF (ultraviolet protection factor) ratings.

also, check out this excellent post on summer clothing. key things to know about your clothing:

The bad news about your clothes…

  • One-third of summer clothes are lousy at sun protecting skin. This is especially true for lightweight, thin fabric made of cotton, linen and rayon.
  • The best sun protection comes from fabric you’re not likely to wear in the summer like thick and tightly woven fabric, dark colors, polyester, nylon and wool.
  • Wet, stretched fabric provides poor sun protection (think wet white cotton tee shirt). Interestingly, a dark tee shirt will probably provide more protection than a light-colored one because the color alone also helps absorb UV rays.
  • Fuzzy, new, unbleached cotton sometimes provides good sun protection when it’s dry, but UV rays can pass through cotton fibers.

not all is lost! check out the clothing treatment sun guard – $4 gets you enough to make a load of laundered clothes far more effective a protectant: a single washing can potentially improve a shirt with a UPF rating of 5 to UPF 30. you can get packs of 6 here. note: the dermatologist and author of the above post sells sun guard specifically, so proceed with caution. or perhaps… on guard. whu-whu…

there is another product on the market that claims to have a similar effect on clothing. if anyone has experience with either laundering product, i’d be interested to hear about their efficacy. couldn’t hurt though, right?

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Posted in advertising, links, melanoma, skin cancer, sunscreen, weather | 2 Comments »

freeeeeee sunscreen!!!

Wednesday, June 8th, 2011

a friend just alerted me to the sun safety expo tomorrow at grand central. free samples of sunscreen!!! i’m so there. that stuff is mega-expensive.

Sun Safety Expo
Thursday, June 9, 2011  |  10am-6pm
Vanderbilt Hall, West Side
FREE sunscreen and the latest on sun protection!
The Skin Cancer Foundation kicks off the summer season with its second annual Sun Safety Expo. More than 20 of your favorite brands will showcase their latest sun protection products, all of which boast The Skin Cancer Foundation’s Seal of Recommendation. 

Take home FREE sunscreen samples and also learn potentially life-saving tips on protecting your skin from the sun and the risk of skin cancer.

Visit www.SkinCancer.org for information on skin cancer prevention, early detection and treatment.

 

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Posted in events, melanoma, merchandise, skin cancer, sunscreen, weather | 1 Comment »

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

home sweet home

Monday, June 6th, 2011

ah, my lovely bed. no one around to draw blood at 5:30 am (and fail three times). no late night coughing of death coughs, no screams from down the hall. just my comfy pillows and the open arms of my wonderful wife.

thank you so much to everyone who came to visit, or who checked in on me via the exceedingly myriad ways of being in touch. i know i haven’t been posting as much – it’s just not as interesting when i’m doing well – but it’s so very nice to know that in my times of need that you all will rise to the occasion. hopefully there won’t be another visit to the hospital for a nice long time. it’s scary how many staff people at NYU i know by name at this point. i mean, they’re friendly and all – but they’re just not people i like to see very often.

so: back to life. i managed to make it through a shift behind the bar last night, and i’m diving in to my writing pursuits. we’ve started the process of hand-making all of our wedding invitations, which is a helluva lot of work but so worth it. wait until you see the final product!

for those of you who might catch the news about the great leaps forward in treating melanoma (here, for example), my treatment is in the family of drugs that blocks the protein uptake of the melanoma cell, but only for those patients with what’s known as a BRAF mutation – about 50% of the population, and thankfully, a group of which i am a part. it’s funny to say this, but it’s a great time to have melanoma. the treatments in the news right now didn’t exist when i was diagnosed three years ago, and i’m incredibly lucky that they’re available now.

Posted in clinical trials, gratitude, hospital visits, melanoma, skin cancer | 3 Comments »

free skin cancer screenings! (updated)

Sunday, May 8th, 2011

friends: there are lots of free skin cancer screenings this month. you have no excuse! it’s free!

new york:

tuesday may 10th at columbia university medical center (upper west side)

wednesday may 11th at bluemercury (dermatologists on the upper east side)

thursday may 12th at mt. sinai (upper east side)

friday may 20th at weill cornell (upper east side)

saturday may 21st at beth israel (union square)

sunday may 22nd at roosevelt hospital (midtown west)

click here for new york’s state-wide screening and dates!

california:

thursday june 23rd at alta bates (oakland)

tuesdays and wednesdays throughout june at california skin institute (multiple locations)

click here for california’s state-wide screenings and dates!

minnesota:

wednesday may 11th at shakopee cancer center

[that's it??? with all those tangerine dreamers out there?]

i forgot oregon! sorry portlanders.

saturday may 21st at providence portland medical center

friday july 22nd at rite aid

not in those states?

search for free screenings around the country at the american association for dermatology

and check the skin cancer foundation’s free screening tour dates to see if they’re coming to you!

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Posted in advertising, links, melanoma, skin cancer | 1 Comment »

may is melanoma awareness month!

Sunday, May 8th, 2011

i’m up late, as i usually am the night before a scan – even one i’m heading into not expecting to find any cancer. but you never know, do you, how something will turn out before it runs its course.

being that may is melanoma awareness month (yes, i’m very aware of it), i’m going to try and post some information about the free skin cancer screenings around the country. as you all probably know right now, melanoma, when caught early, can be treatable and beatable. let it spread, though, and your chances of surviving five years plummet less than 10%. that number stares me in the face every day, and it’s hard to ignore sometimes.

but it’s still important to be strong enough to watch videos like this. warning: you might cry.

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ski weekend!

Friday, March 4th, 2011

wow, what a wondrous whirlwind week ! whew! a new part-time job, a story past deadline – and a ski trip in vermont coming up to boot! sorry about the lack of posting, but i think the scan results deserved top billing for a while. i’m still letting it all sink in. and it feels great. it’s funny to say so, but it’s a great time to have melanoma – the medical advances of the last year or two have dramatically expanded my options, and the options of thousands of survivors. i’ve said before that treating melanoma is like punching jello – it might seem like you’re making progress, but there’s still jello all over the table. i will forever have melanoma cells in my body, but if the treatments can hold it back, then it becomes a chronic illness and not a terminal one. my doctors didn’t say so at my initial diagnosis, but in another time they might have given me months to live – and next month marks three years since then. hooray for science!

SCIENCE!

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Posted in clinical trials, melanoma, music, skin cancer, videos | 1 Comment »

CR.

Monday, February 28th, 2011

it’s happened before… i’m trying not to get too excited. but the scan last week showed no cancer at all – the tumors have disappeared and there’s no new disease developing. my doctor emailed GSK this morning to say she’d had her first CR – complete response. my oncology team is as thrilled as i am.

it might not last, but for now i can breathe a long sigh of temporary relief. they’re keeping me on the trial drug for the foreseeable future to preempt any continued cancer growth, which is a little annoying since the rash and fatigue are tiresome – but man, i’ll take it for now. it could be a whole lot worse. and most importantly, we’ve found a drug that seems to effectively control my cancer, so if it should return, we have tools to manage it.

now to celebrate and crush this cold rainy day with a bowl of pho.

as in pho-k you, cancer.

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Posted in clinical trials, gratitude, melanoma, skin cancer | 7 Comments »

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