Indolent disease

January 24th, 2012

The subway is rocking my frayed nerves back to a semblance of calm as we hurtle underground back towards Brooklyn. The scan results are overall very positive. I'm dealing with a cancer that is, at the moment, "indolent," in the words of my doctor. It is still present in my bowels, and lymph nodes in the area show a subtle enlargement, enough that we can't stop worrying altogether (that is unlikely to happen, ever) but not so much that treatment is immediately necessary. We're stopping the Zelboraf altogether, since the benefits at the moment are far outweighed by the damage the drug has done to my quality of life. I'll have a break from all treatment for at least a month. Lovely.

But we're not quite out of the woods yet. Though I am "in a safe space" (my doc's words again) that allows us to breathe easy and affords more or less a risk-free break for a few weeks, I'm already in discussion around the next wave of treatment. That will be the sixth treatment in nearly four years, not including surgeries and radiation, and there's quite a lot involved in getting everything set up.

We're looking at a clinical trial of an individualized cancer vaccine that comes out of Australian research laboratories. The treatment is currently in simultaneous Phase 1 and 2 testing, and has already proven effective in managing cervical and esophageal cancers along with melanoma. In some cases it has demonstrated a complete disease regression – that is, more than just stopping the continued growth of an already-present cancer, it has actually shown the ability to make tumors disappear. I know that my oncology team would only suggest a treatment in which they have considerable confidence, so it must be very promising.

There's still quite a ways to go until I enter the trial. There are only a tiny handful of available slots in the country, and NYU has just a few. There are all kinds of prerequisites, most importantly whether my strain of melanoma tumors excrete a particular protein crucial to the treatment. I don't have much more information than that at the moment, but I'm sure in a month or two that I'll know more than I ever wanted to know about the vaccine.

For now, I'm going to continue to enjoy my break from treatment and get myself free of this methadone before I end up in a clinic.

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No news = news.

January 22nd, 2012

Y’all know I would have been all over the internets had I ended up in the hospital. Which I did NOT. Good luck me! On horse pills for ten days, but, man I will TAKE THAT.

Now if you’ll excuse me, I have some football to watch.

Posted in general updates | No Comments »

back down the rabbit hole

January 20th, 2012

this week is the first week of 2012 that i’ve felt able to function, not overwhelmed with appointments and trips into manhattan – and of course, now that i’m two weeks free of the zelboraf, the pain is almost entirely gone. if i’ve talked to you recently, or spent time with you recently, you’ll agree that i’m a different person. it’s hard to believe how crippling it is to live with chronic pain. and stepping out from underneath the crushing weight of pain is like coming back to life, like if my body was a throat, i’ve just cleared something stuck deep down. or if my body was teeth, then that tiny raspberry seed that i’ve tried to spring for a week has finally come loose. or if my body was an aching, tired foot, then this week is the cool soak with moisturizer and bath salts. or if… you get it.

of course, nothing that good tends to last too long in my world. i woke up this morning with a fever and the beginnings of the red flushed skin that points to cellulitis, the skin infection that has hospitalized me a number of times, and twice been life-threatening. it looks like i started anti-inflammatory drugs and heavy duty antibiotics early enough that i might have nipped it in the bud, but it’s four o’clock and i’m finally feeling able to leave my bed. not that i could make it all the way outside, but at least i’m in my cozy chair and not sweating out my temperature and spinning wildly in and out of surreal fever dreams. for now i’m just keeping my fingers crossed that i don’t end up in the ER yet again. kathryn made it very clear that this was a busy time for her and i am NOT allowed to get sick. which is, of course, when i tend to get sick.

obviously if i end up in the hospital i’ll keep  you all posted. but for now i’ve got my ice water and my horse pills and i’m hoping the redness and sensitivity will fade quickly.

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Posted in complaining, hospital visits, pain | 3 Comments »

scantron 50/50

January 17th, 2012

i wonder how much all these radioactive scans will lead to long term issues. it’s not scary for me like it once was, but i’ll never forget that first scan when the technician opened the box with the universal radioactivity warning sign, pulled out the silver hand grenade inside and attached it to my arm. whoa dogs.

tomorrow i head back for another scan. usually the wait time for results is around 48 hours, but because of scheduling conflicts, i won’t get my results until a week from today. a long time to wait, especially when the results of the scan could potentially resolve many of the complicated issues we’re trying to manage around my pain medication and the continuation of the zelboraf.

the situation seems surreal, doesn’t it? i would say i can’t believe it myself, but after everything i’ve already experienced it’s just one more insane hurdle that i shouldn’t have to jump. i wish there was some higher-up that i could appeal to, but we’ve got a complex set of problems right now, and there’s not a lot that any of us can do. i still haven’t heard back from the pain clinic around mediating some sort of continued relationship with my doctor there, but i’d really prefer to avoid returning. i wish i had proof of some of the blatantly illegal violations of privacy rights i’ve witnessed. and although my psychiatrist scolded me for not properly thinking through the ramifications of exacerbating conflict with a medical professional who’s crucial to my care, i still very much feel like the victim in this situation – and online reviews of his care mention some of the same things i experienced. i wish i’d listened to these people, but i thought as an experienced patient and forceful self-advocate that i could manage:

Dr. Zou was extremely cold…He also intimated I was a drug seeker, which was extremely hurtful as my grandfather was an alcoholic and I’ve been extremely concerned about being an addict (and have brought that up to each doctor). I have no idea why Dr. Zou is employed at a pain management center or how he could benefit patients, but he was cold, brusque, and generally nasty towards me. I highly discourage any patient going to him…

His diagnosis was inaccurate. His treatment plan was unhelpful. I left his office with absolutely no help and even more frustration then when I went in….He made inappropriate comments that made this patient feel worse.

yeah, those all sound about right. i’m still angry with the way i was treated by him and by the office is general – though his internists were all excellent, intelligent and caring, and when our argument went down, the internist present apologized and said he wished there was something he could do.

anyways, i’m feeling much better – i’m a couple weeks free of the zelboraf now, and a lot of the side effects are fading. i feel like i can live my life again, in ways i wasn’t able to for a long while. of course i always hope that my scans come up clean, but there’s a lot riding on this one. like i said, it’ll be a week before i get the results, and probably even longer before i hear about the insurance company’s final decision on the camera pill, but i’m sure i can find some way to keep you all engaged until then.

for instance, i could tell you all to find some way to watch 50/50, a powerful movie about a young adult diagnosed with a rare, complicated cancer. it’s painful, and filthy, and hilarious; sort of like groinstrong. last night, i managed to get through most of the movie ok until the main character totally breaks down about how truly awful and unfair it all is – from that point on i was choking down sobs. because, yeah, it’s truly awful and unfair. in the movie his new-ish girlfriend promises to be at his side (sound familiar?) and it made me appreciate all the incredible amazing things that kathryn has done for me, and all the sacrifices she’s made to help me manage this protracted battle raging inside me.

though in the movie the girlfriend gets him a dog.

i’m still waiting! where’s my puppy?

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Posted in advertising, art, complaining, gratitude, hospital visits, links, love, pain, philosophizing, videos | 5 Comments »

Meeting results

January 12th, 2012

Well, it's complicated. I'm not going to rehab, or to jail. So that's good. I cried more than I would have liked in trying to explain how it felt to be sent home without my pain being properly controlled. But they listened, and I felt heard, and they had some things to say about how to trust my word versus the test results, and I tried my best to listen without judgement, and to respect the fact that five medical professionals took a lot of time out of their incredibly busy schedules to focus on my individual care. Because they truly do care about me.

Here's where we are: I'm going to get a PET/CT scan this week. Hopefully I'll be able to get the capsule endoscopy as well, but the procedure was denied again (!!!!) – my GI doc is currently appealing at the state level. When I asked his nurse what that meant as far as when we would be able to move forward, she said, well, it's the state, so that's not a good sign.

So: if the scan and eventual endoscopy are both clean, then we'll stop the Zelboraf entirely. Problem solved. No meds = no side effects = no need for pain medication.

Mostly.

See, I'm still on methadone. And in case you haven't heard, weaning off methadone is complicated. That's why they have clinics for it. There's a chance I may end up in one. Which would not be optimal. Although it would be an interesting experience, to be sure.

I asked the pain clinic if I could work with another doctor, and they said no. I asked if I could ask for mediation, to work through my conflict with Dr. Zou, and they said it was unlikely. I'm not comfortable returning to Dr. Zou after the way he treated me, but there's a chance it might be necessary. My psychiatrist reminded me to think carefully about the consequences of conflict with a doctor, especially one with such a crucial role in my care. But how I can I trust him?

And how can I even trust the clinic? I took a "confidential" survey in which I complained about the lack of friendly service and the discomfiture presented by the office itself (too small, not comfortable at all – which seems uncaring and even disrespectful, given their clientele). I finished the survey, only to watch the secretary promptly read it in front of me. So much for confidentiality! This is the same visit in which an intake interview (not for me) occurred in the waiting room, in the seats next to me. "Have you ever been arrested? Have you ever abused drugs? Have you ever been sexually abused? Have you ever sexually abused another?" Hmm, I'm guessing they might not have answered honestly, given that there were, oh, a dozen strangers within earshot. How does that happen? "Confidential" – that word, I do not think it means what you think it means. You said it, Inigo Montoya.

So: now I just have to hope that the scans (at least one for now, while I wait for my GI doc to finish his 18-page appeal for the endoscopy) are negative (which I always do, of course!) so that I can stop taking the cancer meds (which is of course what I want), and stop being in pain, so that I can stop taking the pain meds. Which is very much what I would like to do. And I also have to find someone who can help me wean off of the methadone. Hopefully not in a methadone clinic.

But what if the tests are positive?

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pain: it’s a pain.

January 11th, 2012

tomorrow, i have a meeting with my oncologist, her nurses and my psychiatrist.

why?

it all began january 3rd. i visited my pain management doctor.

he explained that the two drug tests i’d taken recently showed no trace of dilaudid, the fast-acting analgesic that works in tandem with the methadone, a long-acting medication. i take both, multiple times a day, to stave off and manage the well-documented side effects caused by the zelboraf – namely, the excruciating pain that shifts from joint to joint, from hands to feet to hips and shoulders and just about everywhere in between.

my pain medication is essential. when the pain gets bad, i am incapacitated. the medication allows me a modicum of relief. the pain has been bad recently, and the dilaudid, in particular, provides at least some respite from the pain.

so why, if i took it so regularly, would it not show up on my drug test? on TWO drug tests?

my pain management doctor asked me to explain.

how could i explain? i take my medication as prescribed, and it helps me. i would be miserable without it.

have you used heroin recently? or cocaine? he asked.

um. no.

well, he said, i can give you methadone, but i refuse to write you a prescription for dilaudid. you aren’t taking it.

i was stunned. that doesn’t work for me, i told him. that is totally unacceptable.

there’s nothing i can do, he said. i can give you methadone.

you don’t seem to understand, i told him. if you send me home, you’re confining me to my house, if not my bed. that doesn’t seem like you’re doing your job, which is managing my pain (remember the potential post title: hippocratic oath or hypocritical oaf? here he is!).

i don’t remember much of what he said after that, but the message i received was: take your methadone and leave. when i explained that i wasn’t comfortable moving forward in this manner, the doctor said he wasn’t either.

so i said goodbye to my former pain management specialist.

i walked from his office to my oncologist. to be honest, i expected her to embrace me with open arms and say, oh, i’m so sorry you were treated this way. here, let’s find a way to get you properly medicated. and to the credit of her and her staff, they followed a psych procedure that makes a lot of sense, so they sort of did what i’d hoped. but it didn’t end so well. when they told my newly ex-doc about their idea, he said, huh, good idea. guess he wasn’t interested in trying to help me. i’ve never felt so unwelcome.

so: the procedure to prove i take dilaudid is as follows. i come back early the next morning. i take a dose. i come back six hours later. i take another dose. two hours later i take a urine test. and then again, the next morning, i head to the doctor for the third day in a row. i take a dose. i take a urine test.

with each delivered dose, i am taken to a private room, separated from my belongings, and patted down. to see if i have a pill bottle in which to surreptitiously gather my meds. for selling them on the street i guess? with each pat-down i felt more and more like a common criminal, a bad patient being examined for signs of ignoring the proper regimen, stealing pills, abusing them. as i take each dose, the nurse checks my mouth to make sure i’ve actually swallowed the pill. by the third day, i am weary of the long, exhausting trips to the doctor (an hour each way, F train to A train to 4 train to 6 train to M34 bus!). i am tired of being treated this way. i arrive fragile and tense. the nurse calls me in.

so, we’re going to give you one more dose, and that’s it, until we get the results from your drug tests.

what?

no more. doctor’s orders.

what about my pain?

well, we’ve taken you off the zelboraf, so the pain should fade eventually.

eventually? i explain again that going without pain medication will most likely confine me to my home, if not simply my bed. i ask to talk to the doctor about her decision.

i wait.

she’s too busy. go home and see if ibuprofen or acetaminophen will help. i hope it does.

please tell the doctor that i am leaving angry, frustrated and with the terrible taste in mouth of being treated like a criminal, a thief, an addict.

do you see my tears, nurse? they are not from withdrawal. they are from sheer frustration, from being a pawn in a procedure -

i must point out, i completely understand the need for the process. if i go to another pain management doctor and my urine still fails to contain dilaudid, i’ll be right back where i started. this is important.

but guess how my week has been? only in the last 48 hours has the pain started to fade – as it does when i take breaks from the zelboraf. i’ve spent days in such demanding pain that it has altered – no, consumed – my day to day routine. managing my house’s many stairs, typing, even strolling a block or two presented challenges beyond my ability. with the pain, and my disabilities, of course, came feelings of helplessness, hopelessness, despair, pity. depression, anxiety, insomnia. and wondering: what is the pain? and now what is just me, expecting pain?

yesterday, the phone rang. it was my nurse.

your urine tests are back. they are grossly positive.

um, ok. weird. again, i have no explanation.

so here we go, tomorrow, into this meeting in a conference room at the cancer center. i honestly have no idea what to expect.

will there be cameras, ready to film an episode of intervention? (i hope if any of you have previous knowledge of my intervention that you would let me know!) will my next post be from hazelden?

or will i open the door into a den of DEA agents, handcuffs at the ready? will my next post be from jail?

i very much doubt that either of those scenarios are very realistic.

still – is this really happening? have i really been patted down, checked for contraband? have i spent the last week, moaning and feeling sorry for myself, simply because of a necessary procedure? wasn’t the process over when i came to you, three days in a row, taking the time and energy to come and get searched and tested and questioned? what i truly do not understand is why, why on earth would it make sense to simply wait for the results of the test? why not keep me properly medicated until we get a better picture of the situation?

when i left the nurse that day, without what i see as crucial medication, i told her, look. i understand that this is a necessary procedure. but i want you to remember that in the midst of your process is a person. a person in life-altering pain. and that person is being left behind and abandoned.

no matter what tomorrow holds, it’s going to be a long time before i can fully trust my oncology team again.

i am no criminal.

Posted in complaining, pain | 2 Comments »

part four (!)

January 11th, 2012

yeah, there’s more. but i’ve had migraines the last two days (my first in a long, long time) and haven’t been able to spend much time in front of a screen. thanks for all the loving comments and emails and such. i really appreciate all the support. love you all right back!

Posted in complaining, gratitude, love, pain | 1 Comment »

to whom etc. (part three)

January 10th, 2012

friends: apologies for the delay in getting you all updated. hmm, you know what? i’m not actually that sorry. i didn’t finish the post because my the pain in my hands has prevented me from extended bouts of typing. imagine that about half of the knuckles on your hands are mildly jammed. that doesn’t feel very good in your imagination, does it? ouch, says your imagination. ouch, say my hands. they’re feeling a bit better, though i’m not sure i’ll make it entirely through this post in one sitting. maybe i should i cut back on my verbosity? not a chance! that means the pain has won. and we can’t have that. although that particular outcome is far too common these days.

i’ve spent the last week complaining vividly, relentlessly, here and elsewhere. the aches and pains. the fatigue. hair loss. the limitations that my health forces me to bear (which, for each of us, are no less real and stifling given the multitudes, billions even, with burdens far greater than our own). but let’s be honest: that’s nothing new. why do you think i started groinstrong in the first place? sure, it’s provided me with an effective way to keep people updated while avoiding a stream of emails and text messages and a phone tree. but i’ve been just as grateful for the ways it gives me a cathartic release. it’s a public forum for my complaining, and luckily, you, the reader, are allowed to skip to the end or disregard entirely at your leisure. and we continue avoiding the real-life helplessness, or awkwardness, or frustration, or outright anger, that can come when one is face-to-face with another’s pain and misery. that sounds terrible, but the truth is that sometimes, a bit of remove from another’s pain and fear and unfiltered emotion is a safe distance and a good choice.

anyways. what was that about limiting my verbosity? ha! i’m just getting started.

so to brass tacks. on top of all my complaints, 2012 thus far has brought a seemingly relentless deluge of days filled with frustration and inanity.

to wit:

my rejected endoscopy.

my next diagnostic procedure is supposed to be a capsule endoscopy, a.k.a. the camera pill. that magical little machine buzzes through my digestive system with a tiny camera and strobe light, snapping a few thousand pictures on the way down. it’s particularly important for me, given that my tumors live in what’s known as the endoscopy gap – the upper (throat) endoscopic cameras can’t get down that far, nor can the cameras of a colonoscopy make it up. so yeah, it’s pretty important for me. i’ve already done it twice. this time my insurance company decided to deny me coverage, citing a lack of prior evidence and the cost of a potentially unnecessary procedure. um, what? sure, the pill ain’t cheap. but neither is anything else in medicine, including our premiums. luckily, i don’t have to be involved in this particular conversation to assure coverage of the procedure – i’ve been there before, and the most common outcome of said discussion is finding myself on a moebius strip between my insurance provider and the hospital, relaying procedure codes and decisions between two parties that act like feuding friends. “oh yeah?!? well, you tell NYU that we won’t cover it. and that they are ugly.” “united said what?!?  those boys have cooties.” they have cooties: for all intents and purposes, sadly not far off the mark.

i’ve been trying to get the endoscopy scheduled since before christmas. it still hasn’t been approved, even after having the necessary consultation with my gastrointestinal specialist, who spent the entirety of the short visit, cursing as he complained about the absurdity and unnecessity of either of us being there. as of this afternoon when i spoke to his staff, they said my insurance was continuing to deny coverage, but that the doctor had called on my behalf on top of simply filing the appropriate paperwork. hopefully the process will move forward soon.

and then there are my missing meds.

upon returning from my christmas visit to nashville, i discovered a notice that my insurance company, “to ease the delivery and reorder process,” had requested that i find a new “specialist” pharmacy through which i would then receive my life-saving cancer medication. i’d already gone through the reorder process (which seemed awfully easy) and had a refill arriving two days later. i called the pharmacy that had initially sent my zelboraf. no, they weren’t considered a “specialist” pharmacy, though they obviously were able to effectively provide me with the drug. so my order, to be filled 48 hours later, was not approved by my insurance. i call the new pharmacy and go through the always too-long registration process – “no, I-S-A-A-C-S. with a hyphen before it. two As. C. S. I-S-A-A-C-S. sure. India Sierra Alpha Alpha Charlie Sierra. Apple Apple Cairo Sam. OH MY GOD I AM GOING TO HURT YOU THROUGH THIS PHONE!!! still, everything is all set up, and just in time.

given the astronomical cost of my medication ($10000 per month, let’s remember!), i only receive 30 days at a time  (in case i die, so they don’t have to pay for whatever i didn’t use – seriously!). the 30 day limit holds true for many drugs, but it’s treacherous in this situation, since the order has to come on time or else i run out of medication. now we’re closing in on that point, and i’m starting a relationship with a new pharmacy. after quite a bit of back and forth, the delivery is set up just in time, with an express package and all that. it’s monday. they say the package should arrive tuesday, though it also might arrive wednesday morning, which is when i will take my last on-hand dose. tuesday i set up my housemates and neighbors to be on the lookout for the package, just in case i miss its arrival. all day tuesday: nothing. wednesday morning i call to check in.

“oh yes, thank you for calling. your order was cancelled yesterday.”

“wow. did you think to notify me?”

“it seems that was our mistake.”

OH MY GOD I AM GOING TO HURT YOU THROUGH THIS PHONE!!!

this is not allegra. it is not nexium. it’s not an antibiotic. this is my life-saving cancer medication, and you’ve cancelled my order, without telling me, and you’re not sure when i’ll receive the prescription. how remarkably stupid and baffling.

and the reason for canceling the order? they were going to send me my usual supply, but after my recent dose reduction, a full bottle only provides me with enough pills for 20 days. they’re not allowed to send half a bottle, nor are they allowed to send an extra 10 days with a 40 day supply in two full bottles (because sending more than a 30 day supply would be to imagine the impossible – that i will survive another week and a half). so instead of making the necessary calls and thoughtful administrative decisions, they decided to just cancel the order. i wonder, i so wonder, what would have happened if i hadn’t called? would they ever have called me? would i have simply slipped through the cracks, a cancelled order, stamped and filed and promptly misplaced?

of course, all of these conversations with the new, “more convenient” pharmacy happened to occur while two of my closest friends were visiting from across the country, and we had a single hour for lunch.

and THAT (among much else) is what’s so incredibly painful and infuriating about getting caught up in bureaucratic nonsense. instead of having what might have been a opportunity for a relaxing, fun, restorative conversation with my old friends, i end up frothing at the mouth and apologizing for yelling at an operator who has absolutely no power over the situation.

believe it or not, the worst procedural abandonment is still to come. but it’s late and i have to stop writing.

i just want to live my life. simply doing so is challenging enough without the addition of endless hours on the phone, or falling through loopholes, or becoming a number.

i will not become a number.

my life is my own.

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Posted in complaining, events, gratitude, love, pain, philosophizing, videos | 2 Comments »

to whom should i complain? (part two)

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 »

to whom should i complain? (part one)

January 4th, 2012

so: after my second day in a row of multiple appointments and one last one (for this week) tomorrow morning, i’m running out of steam to finish what has turned into my longest post in quite a while. so rather than struggle to complete it tonight, i thought i would post what i’ve finished so far. if all goes well, part two should be posted tomorrow.

with the whirlwind of infuriating, painful, insulting, exhausting experiences the world has wrought upon me recently, i’ve been searching for a title for this post – one long in the making, at least in my head – to sum it all up.

“i’d like to buy the world a coke, but shake it all up before handing it off”
“jonah alexander and the terrible, horrible, no good, very bad week”
“how does one punch the universe?”
“hippocratic oath? or hypocritical oaf?

i like that last one especially.

but this morning, i ran into a friend and fellow cancer survivor who’s recovering from a major surgery (eight hours in the OR, then eleven nights in the hospital – ouch!). she writes about her experience at “to whom should i complain?!“ i can’t imagine a better expression of how i’m feeling right now. i need someone to complain to! is anyone listening? oh, hello there. i’m going to complain to you. aren’t you lucky? though i’m going to tell you some pretty rough stuff, don’t worry or fret too deeply; my life has what seems like more than a fair share of difficult, seemingly insurmountable challenges; so too, though, is there love and warmth and kindness and joy. still, sometimes it feels good to let it all out. since i can’t punch the universe.

we all know, many of us far too intimately, how awful it is to live with cancer. it really, really sucks. but part and parcel of that real, real suckiness is the sometimes overwhelming experience of having to act as an administrator and overseer of your own health. the necessity of being one’s own health advocate can be an exhausting exercise in helplessness and futility. one must operate within – and learn to manipulate – the byzantine tendrils of enormous bureaucracies that see you as a number, or a dollar sign, or a drain on resources, or a risk not worth taking. fighting cancer is difficult enough. but in order to receive effective care from doctors whom you trust, doctors who care as they provide care, it is sometimes required to fight endlessly with the bucking bronco that is the healthcare system.

the real complaining part goes here! coming soon.

Posted in complaining, gratitude, love | 7 Comments »

an auspicious start to 2012

January 3rd, 2012

i’m off to the doctor in a few minutes, so i don’t have much time for writing. so far the new year has featured the tragic death of a friend of a friend’s young child in nashville and a chaotic plumbing disaster here at home – the old adage to never try to fix a leak yourself now holds real and serious meaning to me. don’t try and call me, because my phone is still drying out, along with our kitchen, the downstairs bedroom, the garden apartment kitchen and the basement, not to mention the interior walls and the surrounding wiring. wheeeeee!

i have so much that i’d like to share with you – our tales of christmas in tennessee, our lovely new years eve in the woods upstate, and my ever-expanding hair loss – i have a bald spot, and my beard is completely gone, as well as my eyebrows. >:( that’s about the most dramatic use of eyebrows i have available to me. for now, that will have to wait.

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Best Christmas present ever!!!!

December 25th, 2011

I will call him TJ for Tiny Jonah. What a strikingly handsome puppet! Kathryn knows me so well. Thanks wife!

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Nothing says the holidays like FOOTBALL

December 24th, 2011

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An unexpected Xmas gift…

December 22nd, 2011

On the fifth day of Christmas, my true love gave to me:

FIIIIIIIVE QUARTS OF PEEEEEEE…

Truly, it was an auspicious opening night of our holiday vacation. To combat the inflammatory effects of our travel to Nashville, I took a water pill, hoping to drain some of the fluid from my body before it had a chance to build up. The edema is under control… if only I could say the same for my bladder.

Kathryn and I woke up the first morning at her brother's house in a wonderfully comfortable bed. Jeez, said my unsuspecting wife. You sweat a lot last night! Not unexpected, as night sweats are a common side effect. But man, that was a lot of sweat, and all focused around my midsection…

Oh good lord.

Yeah, so I wet the bed. That bed was thoroughly anointed. But did not also the baby Jesus moisten with his holy bodily fluid that soft hay in the manger? He probably did. I'm pretty sure the wise men didn't bring along a 24-pack of ultra-absorbent Huggies. Maybe that's in the Gnostic Gospels.

By the time I discovered that it was far too wet to be sweat, I came out to the living room where Kathryn was introducing herself to our new (and first!) niece, her namesake Mabel Kathryn. My relationship with Kathryn has seen enough hardship, and this isn't even close to the worst fluid I've managed to splash onto my sleeping wife. The rough times make the good ones even more remarkable, and it was such a gift to see the unmitigated joy on Kathryn's face as she babbled with the baby and stroked her fine, soft hair.

And lucky me – I got to interrupt their reverie to inform Kathryn that she should probably change out of her pajamas she had slept in. Merry Christmas, honey! I peed on you.

Ah, life with cancer.

Still, it is truly a miracle to see another holiday, and to be here in Nashville with Kathryn's loving family (though of course my heart yearns for my own). I love that Thanksgiving helps us to remember all that for which we are grateful, and then Christmas comes around and gives us a chance to shower our generosity on those people for whom we give thanks. What a perfect little holiday cycle!

And even better, New Year's is just around the corner, and if we flubbed the giving of gifts or failed to properly recognize and thank the important people in our lives, then we stand at the precipice of a new year, a fresh start, and we can resolve ourselves to work harder, to be more present, to listen better, to be all of the person that we want to be, that we KNOW we can be.

My first resolution for 2012?

STOP WETTING THE BED!

Merry Christmas and Happy Hannukah my friends!

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wacky wednesday

December 14th, 2011

it’s another one of those post-anesthesia days. i’m tired and totally spaced out, and i think it might be movie time soon. or maybe nap time. or maybe a bad movie which would combine movie time and nap time. i’m undecided, which is common on these post-operative days.

but – all is good under the hood. the camera did show a few spots of irritation and samples have been sent off for biopsy, but they’re nothing to worry about according to my GI doc. i should get the full results next week.

that’s all i got in me today. it’s definitely nap time.

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happy endoscopy day!

December 13th, 2011

it’s almost as exciting as christmas day! except that santa gives you propofol and sticks a camera down your throat and instead of milk and cookies you give him a small piece of your insides so he can run a biopsy. see, it’s really just a small difference.

yeah… not so much. though i almost had myself convinced. maybe it’s just my feeling a little weak with no food or drink and NO COFFEE.

really though, it’s not such a big deal. i’ve had plenty of endoscopies, and the upper is far, far, inestimably far more pleasant than the lower. for those of you who are around my age and have yet to experience the mind- and colon-blowing magic that is a colonoscopy, YOU ARE IN FOR A TREAT. except change “a treat” to “five hours pooping your brains out.”

on that note, i’ve got to head to the hospital.

where they have ice chips!

it IS like christmas!

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The shower’s aftermath

December 8th, 2011

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(Un)happy feet

December 7th, 2011

It’s a dreary, wet day here in the city, the sort of day that brings with it a communal mild depression, or in some cases a bit more than mild; a shared gloom that shortens fuses and raises tempers with its inescapable damp. True, it’s December,and it could easily be terribly cold and uncomfortable. Still, it’s a day that helps me recognize my incredible luck at being able to work from home, and increases my already near-constant awareness of the sacrifices made by my incomparably lovely partner, sacrifices on her part that allow me to rest when needed and work when I’m able. I marvel at Kathryn’s dedication to me, the burden she must bear in caring for me – the long, uncomfortable commute to a challenging job to provide us with benefits and stable income; the emotional weight of my tenuous existence that she has to carry like a porter, my Sherpa toiling alongside me up the Everest of a life defined by my demanding and harrowing illness  – and through it all, as I’m sure so many of you have seen time and again, somehow she maintains a wondrous grace and groundedness, a presence that is a balm for all that ails me, and a driving force for helping me break out of my cocoon of pain and exhaustion and nausea and frustrations and did I mention pain? and showing me all the joy and beauty and miracles that abound in our lives, and in all lives. So: thanks, my darling wife. I love you more than I can say, and you know I say it a lot.

This week, managing my health has been nearly a full time job, one of those weeks when Kathryn’s support is all the more meaningful. Monday I was in appointments from 10 am to 6 pm, with three blood draws and only a short break for lunch; Tuesday I was on the phone with follow-up calls from 9 am to 2 pm – including setting up my upper endoscopy for this coming Tuesday; today is a light one, with only a single visit to a podiatrist. Of course, the doctor is far from home, so I ventured out into the misty unpleasantness I had hoped to avoid and get to the doctor via an absurdly convoluted trip involving the F train, the A train, the 4 train, the 6 train and then finally the M34 bus (there’s a way to get there with less transfers, but it involves far more walking, and the pain from walking is the whole reason for the appointment).

I headed to the podiatrist with high hopes, as the calluses on my feet have become exceeding painful. They first developed from dancing at my wedding, but the Zelboraf is known to significantly lengthen or halt the healing process altogether, and six weeks later they remain unchanged, growing more painful by the day – yesterday I had to get in touch with my supervisors at the venue where I bartend and ask for a temporary medical leave (which of course was granted, but I hate that I had to ask). Sadly, the foot doctor had few answers – I had imagined some sort of magical nitrogen laser that would make them disappear forever, but she could only recommend a urea gel and moisturizers, along with a custom in-sole that would run me $600 and was not covered by my insurance. And of course my insurance doesn’t even cover the gel she prescribed. Booo.

On top of a frustrating week with far too much pain, I’ve had to watch my hair loss accelerate dramatically. My hair, oh my beautiful hair. It was perhaps 10 days ago that Kathryn asked me if I’d plucked my eyebrows – the moment was sort of like when Wile E. Coyote finally notices that he’s been walking through the air over a cliff, and his realization initiates his instant plummeting. Once we discovered my hair loss, my hair all decided the time had come to drop like so many leaves in October. My eyebrows, my beard (my beloved beard!), my armpits – even my eyelashes (my beloved eyelashes!) have started to shed. I still have a good head of hair, but it continues to thin quickly, and each shower moves the process along faster. Soon the carpet will indeed match the drapes, in that they will not exist. Since the loss is treatment-based and not physiological, preventative options like propecia aren’t at all effective.
If I wasn’t still writing on my phone, here’s where I would embed a video of a song from Hair. Sing it in your head!

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Late night update

December 5th, 2011

Since it looks like the last post went through, I wanted to take a moment to fill you all in the latest. I’m off to the doctor(s) [always (s)] tomorrow – pain management, infectious diseases and a visit with my oncology team – so I’ll know a lot more by the end of the day and will be sure to keep y’all up to date.

The newest enemies in my continued dealings with chronic pain are the silver dollar-sized calluses on the pad of each foot. I danced too much in thin-soled shoes at the wedding (no regrets, obviously) and the subsequent foot damage has yet to heal even the tiniest bit. There’s been a noticeable slowdown in the healing of minor cuts and scrapes – when things get bad, like my tremendously painful sunburn received at the wedding or said calluses, it can take weeks or even months to fade. To quote Jackson Browne, “I don’t do too much walking these days.” He should have added “because every step is agony.”

Agonizing though it may be, it pales in comparison to the other significant development ’round these parts: I am losing my hair.

Miraculously, I’ve avoided it so far through 3+ years of treatment. And in discussing it with one of the nurses, I found that it’s a common complaint of those taking Zelboraf, but oddly, nearly all those afflicted found that while their hair thinned dramatically, it never disappeared wholesale. Still, it’s emotional to have to unclog the shower drain twice during my showers, and even then, a post-drainage check of the tub turns up scads of loose hairs. I know, I know, my good balding/bald men; this is nothing compared to the full loss of a head of hair. But my goodness, even a light culling of the head hair herd is shocking.

Remarkably, my head of hair still looks intact and almost exactly the same, even with my last haircut bordering on two months ago. The real problems lie in all the rest. The whole hair loss question came up when Kathryn asked if I’d plucked or trimmed my eyebrows. My beard is quickly fading, and spots of hair all over my body are doing the same. As much as I love costumes that incorporate facial hair drawn with markers, I’m not into drawing on my face forever.

Whew! It takes a lot longer to write a successful post on a smartphone keyboard. After all my appointments tomorrow, I’ll know a lot more, so I’ll save my achy typing finger for further updates.

In the meantime, thanks again for putting up with all the spam – please do NOT click on ANY of the links included in the strange-looking comments and definitely do NOT accept or install any automatic downloads experienced while visiting. Though you almost certainly have nothing to fret over, it’s not a bad idea to make sure your antivirus and antimalware software is up to date.

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