18 May 2008

the story so far.

this post will be extremely long. do with it what you will. skim. scan. peruse. delve. devour. no pressure, no expectations. a little sunday reading for you.

i thought it might be helpful for people to hear the story of all of this from the beginning. i never really got around to posting a thorough explanation. at the start, even my few regular readers might not have seen it coming. so here it is.

the mole.

a mole has been growing on my left leg for a year or so. approximately four inches above my knee and a bit to the left. small. i never thought much of it. people have moles. sometimes they start growing and then you cut them off. end of story. my lack of health insurance outweighed any minor worries. then its rate of growth increased. it began building up substance, pushing out above the skin. it would grow a bit and the skin would brush off in shower, and a layer just a little stronger would take its place. sometimes i would wake up with a little speck of blood on the sheet. i thought it could be easily removed whenever i felt it necessary. to me it was just a tiny scab, a slight annoyance. if i tired of it, i could just get some ice and my leatherman and it would be gone forever.

the lump.

in the first week of february, i found a lump. i don't remember exactly how i stumbled across it. i think it was while i was removing my boxers late one night. there it was. a slightly swollen lymph node, tucked in among the pocket of nodes left of my groin. i sat down on my bed. i sat down and i said out loud, "oh my god. my life has just changed forever." truthfully. in that first instant i knew something was very wrong. as if powering through the bitterness of february in new york wasn't enough.

a week later, i was in california for a much needed early taste of spring. i was scared. i was with my family. i didn't want to concern them. on the first of march, my health benefits would begin. i figured i could wait until a doctor took a look and then let people know. no one ever wants to hear about a mystery lump. it was still small. when i would do yoga i could my leg muscles were affected slightly, that there were limits to my extensions, and that the point of issue was the lump. that was about it.

i lived my life. i expended my energy surviving the end of winter. and the lump continued to grow. it grew fast. it pushed upwards and outwards. i came to think of it as a companion. my mystery lump/my mystery lump/wherever i go, he goes. that sort of thing.

when the growth became visible on the surface of my skin, i sat down with my friend nora. she went to vassar with me. and she graduated last week from mount sinai medical school. she's smart. and so i asked her. "what's this lump?" and she felt it and said, "well, it could just be a fatty deposit. or maybe the effects of an STI. they can probably put you on meds to unblock it. or drain it. or at worst, cut it out." i asked her if i should wait for my now one-week-away benefits or if it was important enough to get checked out. smartly (i told you she was smart) she told me to wait for my benefits. it never crossed my mind that the lump might be connected to the ever-expanding mole-mass above my knee. if i'd shown her that as well, she would have told me to head to the doctor the instant i was covered.

march one rolled in. and i slacked off. it was just a little lump. no big deal. my boss recommended her primary care physician. i called his office. "i'm sorry, since you're a new patient, it's going to be quite a while before we can see you." ok fine then. fine. i will go somewhere else, i thought. but then i didn't. and then a week went by. and another. i finally got around to calling back. the next appointment they had was in late april. i set it up. the lump grew.

and grew.


mid-april. i headed west again. the lump was bigger than ever. from small grape to golf ball in two months. it assuaged my worry somewhat that the lump was never painful - the only noticeable physical effect was the slight strain i could muscles just below. i was staying with my grandparents, in town for a weekend to celebrate their 65th wedding anniversary. 65 years! and still head over heels in love with each other. inspiring, ain't it? it was an emotional weekend. my grandfather, after three heart attacks and decades of suffering through degenerative disc disease, was in constant and agonizing pain. at thanksgiving the previous year, he had offered me a ticket to come out and visit any time. he told me he would leave it in his will. i told him he shouldn't say things like that. he was ready to die. would this be my last weekend with him?

perhaps it was the stress of a tearful flight, writing a letter to my grandparents, telling them that i had learned from the lessons they had taught me. from their lives lived with joy, compassion, conviction. showing them that even as they passed on, their ideals would live through their children and their grandchildren. perhaps it was the effects of altitude and pressure changes. or maybe it was the rough and tumble make-out session the night before.

but that first night, in the silent darkness of my grandparents' guest room, i woke up short of breath. and in excruciating pain. it felt as if the lump had grown spikes, a sea urchin urging its sharp points up into every nerve, like being stabbed with tiny knives from the inside. blinded by pain, writhing in bed, i broke into a cold sweat with fear. fear that had built up inside me for months and been ignored. i stumbled into the bathroom, barely able to stand straight between the waves of pain. i found a bottle of alleve behind the mirror - but that makes me throw up, so no good. given the long-time vagaries of my lower back, i usually traveled with ibuprofen. but i'd forgotten my boy scout ways this time. i continued my search through the medicine cabinet until i found a large bottle of oxycontin. he wouldn't miss just one pill, would he? 45 minutes later i passed out blissfully, waking in fits and starts but now dulled and drugged.

the next morning, the pain subsided, leaving me with nothing more than a sore leg and a groggy head. i told my grandparents about the lump. they were terrified, of course. and my fears were growing. i explained to them that my appointment with the doctor was almost immediately after my return home, and that we would all just take a deep breath and hope for the best. i relaxed and enjoyed the family celebration through lingering aches and a deeply buried terror.

doctor, part one.

six years i'd gone without health insurance. and now i finally was covered. it was exciting. i was actually looking forward to getting a physical. it was a bit of a let-down. all that poking and prodding, generic questioning, a lack of any personal connection. i explained to the doctor about these two growths on my leg, the mole above the knee and the lymph lump. when he pulled my boxers aside to examine the lump, he remarked concernedly, "oh yes, that's a big guy." he looked at the mole and pointed out the bleeding of its brown margins into the surrounding skin as a sign of potential melanoma. "i'm going to send you to a dermatologist," he said. "right now. you have an appointment in twenty minutes."

they don't usually do that, do they? send you immediately to the specialist i mean. threat level was now at orange.

doctor, part two.

an hour later i cringed as the numb burn of lidocaine spread underneath the mole. i HATE local anesthetic. the dermatologist deftly excised that hairy, scabbed over piece of me, leaving a bleeding, subcutaneous perfect circle of flesh. "i'll rush this is for biopsy," dr srivastava said. the hiss of gas. the smell of burning flesh. cauterizing is awesome. "i'll get you in touch with an oncologist at NYU to do a lymph node biopsy."

wait excuse me what?

last minute appointments? rush testing? multiple biopsies? the word oncologist? what in the hell was happening? and i want to know/is this really happening to me?/i can feel/the winds of change blow through me. that's from a song i wrote. i played it that night and felt strange. and scared, ever more scared.

doctor, part three.

see, i told you this would be long. are you still reading? i probably wouldn't be. it's getting scary!

two days later. the mole biopsy showed a positive test for melanoma. arrangements were made to get me into NYU cancer center. i scheduled the the lymph node biopsy. writing the address, i remember my hand shook as i wrote that word on the bright blue post-it note. CANCER. the c-word that is not cunt and is far more unpleasant. the c-word sank into my brain. my morning commute through madison square park became long, philosophical, circular strolls. i would get up early just to have time to think.

we're now in the last week in april. about three weeks ago. that is unbelievable.

the oncologist took one look at my lump and said, "the biopsy is a formality. that is melanoma and we have to take it out. let's schedule your surgery." she thoroughly scanned my body and checked out the lymph nodes in the throat and armpits. they took my blood. i was a little shaken. the nurse tied my arm and asked me to make a fist, which i did, on the arm that wasn't tied. that was not very helpful. we scheduled the PET/CT scan for the next morning.

three attempts at the biopsy turned up nothing but necrotic cancer cells, jet black fluid pulled from the center of the lymph node. that was a bit of a shock, watching a doctor pull black goo out of my leg. pretty gross. we scheduled the surgery for may 9th.

the month of may.

right now i'm at the last day in april. i'm reading through my posts over the last few weeks and realizing that they cover the story much better with their pleasant presence of the present. it would be silly to try and do it again, looking back and trying to be funnier than i was before, which was not particularly funny anyways. but i don't see myself doing much better. plus, my god, this is a really long post! i should stop soon.

so: here are the may archives. if you're interested in getting the story from the lymph node biopsy to the right now, go to the archives and scroll down to the bottom of the page, reading up from may first. that will bring you back to this post.

the latest.

i have two appointments tomorrow, one with my medical oncologist and one with my radiologist. by the end of that four or so hours at the hospital, i will hopefully know:

the treatment plan.

radiation will be involved.
how often? how damaging?
how bad is it really? how sick will i be? do i need to get on disability?
melanoma vaccine.
still in experimental phase. are there side effects? is it worth it?
when does all this get started?

expect a full update late monday afternoon after i'm through with the doctors. i'm just as curious as you are.

and if you've made it this far, thanks for reading. if you've just told your friend who i might know too that i'm recovering from surgery and their reaction is "whoa, how'd that all go down?" then you can just direct them here.

and a special thanks for my friends ted, willie and robert. i was feeling feverish last night at about 1 am and i didn't have a thermometer and nothing was open. and a couple text messages later i was hand-delivered a thermometer.

now that's love.


  1. hi. thanks for that. it was actually really helpful, and i hope it was somehow cathartic to get it all out in one piece. i have, somewhere in my notes from a class this semester, an explanation of which clinical trials to try and which not, based on the Phase. If you can find out the phase of the melanoma vaccine, lemme know. xoxo

  2. hey. thank you for posting so much. good luck with docs today. love you!

  3. I read the whole thing. Needless to say, I am sending positive energy your way. As much as I can spare.