Cancer Update (emphasis on the Up)
For anyone who’s been curious about my health status over the past 6 months since my last post, know that much has occurred and many profound lessons have been acquired (and lost). Because our time is agonizingly brief, I’ve whittled down this update to one item — a piece of advice, one that I’ve wrestled from the gnarled hands of this disease. The most vital nugget of information I have gleaned during this entire cancer saga (and when I say vital, I mean for the love of mother nature, once you read this information, cling to it with the strength of the creature-spirits of a thousand-kajillion galaxies lest it be torn from the consciousness of the very universe) is as follows: never give a drugged up post-op patient access to their own smart phone.
Alas, if you fail to adhere to this edict, the consequences are unspeakable. May god shield your eyes from stupid images like this:
You may ask yourself: where on earth did that stupid self-aggrandizing smirk-selfie come from? What a Jabroni with a capital “Jet-the-fuggouttaheyah”
Where indeed.
At that moment, it was a little before 6AM the morning after my second surgery at MSK. Second, you say?
To catch you up: 2 weeks after my last blog(lamp)post in May, I got another PET Scan. A small but now legendary bright spot remained in my chest. Bright on a PET Scan in this case = “we’re not sure but probably you still have active cancer” = “you probably need a lethal chemo regimen followed by an autologous bone-marrow transplant" = “but that’s a tall glass of eeek-uh-oh-this-is-dicey so we better be sure and did we mention we’re not sure?” = “we have to be extra sure so let’s do surgeries to be sure before we nearly kill you so you don’t die.”
In case you didn’t follow that, after you finish the initial treatment protocols for Hodgkin’s Lymphoma, if the PET shows brightness, they sometimes run pathology on the remaining mass before engaging in further high risk treatment. Pathology means surgically going in with instruments to take some of the mass and run it through special magical medical devices which magically spit out magical results. Or, like in the Willy Wonka machine that claimed to locate the remaining golden tickets, they take three weeks and then don’t.
But before doing surgery, let’s wait. Why wait? There was some fair speculation that the brightness could be something called Thymic Rebound Hyperplasia. Basically, during radiation, chemo, even pneumonia, the thymus gland (which matures T-cells, sits superficial to the heart, same zip code as my cancer) can shrink down to about 50% of its original size. After treatment, the thymus grows back to its original size and can look like cancer, but it’s not. All of which is great PR evidence for my new self-help cancer book, “Quit Fucking Panicking: no one knows anything about anything.”
So we waited 3 months, did another PET scan in August, and, ta-da, brightness was Rhianna bright like a diamond-worse.
Cut to the surgeon smiling at me maniacally like Willem Dafoe in Platoon before he dives head first down into a Vietnamese tunnel.
The first attempt to retrieve a biopsy was straight forward, and by that I mean straight forward through my sternum with a large gauge needle. Thanks to a combination of different meds, you can be awake enough during such a procedure to hear and watch a little metal hammer strike the needle over and over and over again until it penetrates the marrow of your sternum and then the soft tissue underneath; so awake indeed that you can answer in the affirmative when the interventional radiologist reacts to your grimace and asks, “Can you feel that?”
Why, yes, sir, thanks for your insightful query, I can feel that. Turns out, if you’re not under general anesthesia, you can feel a needle when a hammer pokes it into the marrow of your sternum.
I’m very fortunate to know what that feels like.
Biopsy results typically take no less than 3-5 business days. Three weeks pass and I am told the results were “non-diagnostic,” which sounds good but basically translates to the dude in Willy Wonka saying, “I can’t tell you, that would be cheating.”
For whatever reason, there was not enough tissue in the needle-core biopsy to make a clear cancer / no-cancer call, so we had to go in deeper.
Deeper = Video Assisted Thoracoscopic Surgery = VATs (See rudimentary diagram below). In so many words, they go in with a camera crew and mine for anything that looks like cancer.
Despite my longing to watch the surgery live on screen, I had to be under general anesthesia (primarily because they had to deflate my right lung to access the mass; apparently this sensation doesn’t promote the stillness necessary to not knick a major blood vessel).
I despised the idea of being under general anesthesia. Not because I was stubborn, although I am that. Why? Because I was afraid. That’s right, for the first time during this entire sick-tale, I was afraid. How did I know? Because I’d felt it before. Back in high school, I’d be lying in bed and suddenly I’d be overcome with a surefast sensation that I wouldn’t wake up if I went to sleep. So I’d stay up all night writing my own eulogies and wills & testaments in my journals. You know, just in case.
I had that feeling in the days leading up to this surgery. The procedure was relatively routine, but I wasn’t ready to go yet. In part because it would be such a dumb way to die.
((
How’d he die? Cancer, right?
Well, no, they weren’t sure if he still had cancer, so they were doing a biopsy to find out and he just… didn’t wake up.
Huh, that sucks. Didn’t he write for TV or something?
Yeah, I think so.
But I heard he had a cleaning business and hung TV’s for people occasionally and was, like, a mediocre soccer player with a bad hip. Didn’t he act too?
Nah, I don’t think so. Nothing that I saw.
Hm. What was his name, Chris… Carbonara or something?
Yeah. No. Chad Car something. Carlisle…
Carpile? No. Carfires, Carfirestein, Carswanson, Carswampsonite, Carpenter…
Carpenteria!
THAT’S IT! Chad Carpenteria!!! Now I remember him. Sort of. Nice guy.
Yeah, sorta nice-ish. With a lot of hair. Chad.
Yeah… Chad Carpenteria with a lotta hair. Well, he lost the hair, I think.
Yeah, chemo. Shame. Think of all the shampoo saved though.
True. Well, wanna finish watching the last episode of The Irishman?
Episode? Isn’t that a movie?
Ah, shit. Yeah. Wow, long movie. Jesus, even for Scorsese. So what? Let’s finish it.
Wait, let’s watch something on TV. Ya know, for what’s-his-name.
For Carl?
Yeah, for Carl.
))
My name is not Carl. And I’m not dead yet.
That’s where the stupid smirk in that hospital selfie came from.
I was just so happy to be alive. And to not be named Carl (no offense to the Carls).
And, it turns out I’m not going to die from Hodgkin’s Lymphoma just yet. The surgery was the day after my 34th birthday. A week later, my oncologist called me and said, “No Lymphoma, come see me in 6 months for a CT Scan.”
The brightness on the PET was inflammation from radiation treatment and scar tissue. 4 months of asthma, several ounces of blood coughed up, 2 months of chemo, 2 more months of more intense chemo, 3 weeks of radiation, 3 months of waiting, 3 months of more waiting, 38 science credits, 2 surgeries, and here we are: cancer free.
For now.
There’s your update.
Until next time, this is Chester Catfires bidding you happy holidays.
LAMPPOST COUNTRY: A Not-So-Brief Cancer Update
At the time of my last post, I was 8 days deep into the first of two, twenty-one day intensified chemo cycles. Smoked ‘em, what’s next, I asked with impunity. How about seventeen days of Involved-Field Radiation “Therapy”. For the uninitiated, you lie on a table and get zapped by imaginary, painless beams of destruction for 3 seconds at a time which, in increasing order of importance, cause a gnarly latent sunburn, destroy hair follicles, kill regular cells that regenerate, and kill cancer cells that hopefully don’t — collectively, 30.6 grays of radiation, a lethal amount if delivered in one shot, hoorah. K, did that, what now? Now, it has been 148 days since my last chemo infusion, 88 days since my last exposure to radiation, and, in 11 days, I will have another PET scan to determine whether our medical weaponry impaled the cave-dwelling beast whose name we dare not utter into submission beyond repair.
But who’s counting?
I am. And, if you’ve been hashtag capital “B” Blessed with a life-threatening illness (or if you’re close to someone who has been), you are too. Counting. Always counting. Weeks. Days. Hours. Infusions. Scans. Days until next scan, days since last scan, days left until you can eat pizza and sugar again without gut twittering remorse. Days grass has been green and pollen has been visibly surfing air waves. Counting the days since last you couldn’t count more than a couple of breaths before you coughed.
Measuring the distance between you and your illness as if they were two separate things. But this is a futile enterprise. Doing so is like driving in the dead of dawn, eyes locked in the rearview mirror on the snoring sign with your hometown’s name on it, gradually overflowing with pangs of victory as it becomes tiny and dim in the mirror and you get further away, and just as you put pressure on the gas and fist pump the air to celebrate your narrow escape, your fat schnoz — dank and swollen from all that Northeastern pollen and greenery — whapow’s into the steering wheel because that goddamned sign from which you were running has somehow awoken and found its way in FRONT of your Prius, which now has yet ANOTHER dent because of this universal law called inertia and another universal theory not yet risen to the bar of scientific law that Toyota Priuses exert a gravitational force on denting projectiles. I suspect in this case science will soon catch up with collective wisdom on these two facts: 1. the Prius model is predisposed to getting fucked up, and 2. you cannot outrun your own body.
You, so clever to think you could sneak past your own self, ran smack dab whapow back into it. Nice try.
Alas, that’s what the game of cancer feels like. To paraphrase Lewis Carroll, it’s like running as fast as you can just to stay in the same place. This, truly, is slow country. Reminds me of working in TV.
It’s the same feeling I had when I was four years old and my dad gave me a kite string in the front yard and told me to run as fast as I could. I was industrious; I obliged. Just as I got up to a full sprint, I turned and ran forehead first into a metal lamppost. Duuuungggg. It rang like a Mike Tyson boxing bell. I got creamed. I was down with a capital “D.”
When you catch cancah, you board a never-ending elliptical of counting, hoping, worrying, mitigating, and distracting until you whapow into one of many hidden lampposts. This provokes unadulterated textbook anxiety of the most diabolical sort. And it is inescapable.
I’ve spent a lot of time wondering from whereth cometh this anxiety, my hope being of course that if I were to get a lock on its origin I could banish it back there. Many assume that it is born from a fear of death.
A fair deduction.
However.
I don’t know about you, but dying isn’t what I’m afraid of. It’s dying with a long list of important shit left tah-do.
And while I am choosing not to discuss it in this public forum, one of the silver linings of this illness has been that it’s resulted in some important additions to my to-do-before-I-croak list, one of which I’ve begun learning how to do in a classroom setting. So, each time a scan approaches or I have a new bizarre symptom that results in a surprise MRI on a Friday to rule out a spinal tumor (for example), I’m wondering — deeply, maddeningly, desperately — wondering if I’m going to be able to launch that new item on the to-do list or if I’m going to whapow into another lamppost. What does the lamppost look like? It ain’t an LED beacon, I can tell you that. On the tame side of the spectrum, it is lung toxicity, a weakened immune system, and constantly looking over my shoulder for “lobular masses.” On the harsher side: different chemo, immunotherapy, bone-marrow transplant, question mark, question mark, question mark — all of which either delay me engaging in a life and a career where I can actually pay for things and make myself proud and feel like a man or, worse, end with me dead with a bunch of flaked appointments on my google calendar and people saying, Are we supposed to bring a card to a funeral? Shit, I didn’t bring a card, did you? Can I co-sign it?
Don’t bring a card. Never bring a card. Send a card. Bring words from your guts that you always wanted to say and say them standing up.
And don’t worry, you won’t be at my funeral. Not anytime soon anyways.
For one, my lack of engagement with social media will likely prevent most of you from even knowing I was still alive. I’ll be like that click-bait headline way at the bottom of an unrelated article, “10 Celebrities You Thought Were Dead But Actually Were Alive But Wait They Just Died Two Months Ago. (Is Rick Moranis still Alive Question Mark)”
And for two, physically, I’m great.
If you’ve read this far, that’s probably what bringeth you here, right? How is that ole sumbitch doin’?
The Escalated BEACOPP chemo regimen was a walk in the park. The most challenging aspect was the borderline psychosis that comes from that second P, which stands for Prednisone, and the hidden W which stands for Winter. 75 mg of a daily corticosteroid with a foot of snow outside and the sun setting at 4:30PM will convince you to run a marathon of two-step wind-sprints in your brother’s kitchen between the oven and the refrigerator until it wears off, at which point you’ll parkour kick-jump off the refrigerator and dive head first into the open oven set to 500 degrees Fahrenheit. (Who knew that word had 2 H’s?). To put it another way, if you haven’t gargled Prednisone in December in Upstate NY lacking surety of your future existence, dare I say, you haven’t lived, man. You know nothing of Anxiety with a capital “My Face Is On Fyre and My Mediport is Migrating into my Right Ventricle and Where’d All My Savings Go.”
Hoorah.
Did the chemo and the Prednisone and the radiation suck? I wouldn’t opt into them on a partly cloudy free Saturday, but they weren’t that bad. They make you feel like luke-warm garbage, you have trouble shitting, you lose all your hair and your appetite, and you forget people’s names sometimes. Boo-fucking-hoo. You’re no hero. A note to cancer patients everywhere, with the exception of a very small number of you, you did not kick cancer’s ass. Your nurses mostly did. They’re the real heroes. You put one foot on their shoulders and the other on decades of human-and-animal killing scientific research, you worried a lot, you did some research by typing words into a magical machine invented by other people, powered by an energy grid built by other people, you showed up for your appointments, and you took your medicine. Quit dancing in the end zone. Other people carried you here.
And besides, it’s filled with lampposts.
The short answer to your question is that this sumbitch is great. Better than I’ve ever been in my life. Treatment is donezo. Hair and strength are returning. I’m filling my days with cleaning homes and taking classes and reading and writing so I don’t have to think about that big PET scan in a couple of weeks, the one where you get a gold star, a pat on the back, and a follow-up appointment to have another one in a few months.
Sure, I ran into a few lampposts after treatment ended. My below-average immune system means I catch every bug that goes around, including one whose symptoms included spontaneous projectile puking and shitting for two days, hoorah. I had to have an MRI on my thoracic spine because I was having neuropathy around my chest. Neuropathy around the chest, you say? Imagine wearing an invisible thermonuclear tube top that provides constant alternating freezing cold, numbness, sunburn, and bee sting sensations. That went away, but then I caught a chest virus and couldn’t breathe for two weeks. Had another scan to make sure I didn’t have a blood clot in my chest, which came back negative, but showed that I have stenosis (constricting) in a giant vein below my clavicle.
Lampposts, brah.
But like I said, best I’ve ever been. And that is not millennial-fluent hyperbolic sarcasm. That is the truest thing I have ever written. Physically, I feel fantastic. Mentally, I feel nervous and enthusiastic and confident and calm and joyful and in hilarious insightful conversation with a formerly hibernating zone of my own brain. In short, I feel Alive with a capital “Not Going to Die, Got Shit Tah-DO.”
Oh, that constriction in my subclavian vein? The body is cool; without me asking or thanking, it built up collateral veins to redirect blood traffic. Hemodynamics. Problem solved.
That’s the thing about hitting the lamppost when I was a kid. I got up. I went around it. And I kept running. Take it from me: if you’re post cancer treatment and you whapow into a lamppost, mark it on a map, run elsewhere, and stay frosty. You’re in lamppost country now.
I still run sometimes. In fact, I’m going to press post and go for a run right now. Because I can.
Hoo-rah? Me-rah.
Photo courtesy Sam Chabot @chabot_photography_boudoir @chabotphotography
BRIEF CANCER UPDATE
A brief update for those curious about my status. After two cycles of ABVD treatments, I had an interim PET Scan to measure the efficacy of the treatment. Standard protocol for Hodgkin’s. The results came back mixed. The good news: the tumor had shrunk by approximately 50% and the cancer had not spread anywhere. The bad news was that part of the tumor still showed tracer uptake, meaning that cancer cells are still active. The brightness of this uptake was a 4 on the Deauville Scale. For above a 2 on that Scale, present treatment protocols evolve into a series of complex data sets and flow charts based on initial staging, age, etc. The clinical recommendation from my local oncologist was to put me on a much more intense regimen called EscalatedBEACOPP instead of proceeding with the planned 4 more cycles of ABVD. This to eliminate the cancer and reduce chance of relapse. Hey, I’m all for that. But it’s an intense routine. If ABVD is a bitch from hell, EscalatedBEACOPP is the bitch’s diabolical great grandmother who hitched a ride with Sam Neil on the Event Horizon to bring unimaginable horror to the corporal and psychological frames. I’m a skeptic, and the near and long-term potential toxicities of that treatment are freaky, so I got a second opinion from an excellent lymphoma specialist at MSK. This all in the few days leading up to Thanksgiving, no easy task, but made much easier once my local oncologist called the guy.
Bottom line from MSK was that I could either “take it on the chin now” with two 21-day cycles of escBEACOPP +radiation, or continue with 4 cycles of ABVD, probably eliminate the cancer, but have a higher risk of relapsing, etc. in the future. As one nurse at MSK put it, “You just need a little more love.” The way the information was presented, easiest decision I’ve ever made. Escalate me, captain.
The 21-day escBEACOPP cycles go like this:
Days 1 - 8, I have a variety of chemo cocktails, either via IV or orally or both. Days 1, 2, 3, and 8 are the worst.
Days 1 - 14, I take a high dose of Prednisone (turns out Prednisone would actually eliminate lymphoma tumors by itself, just not kill the cancer cells and they’d come right back).
Days 15 - 21 — my body tries to recover before the next cycle begins.
Throughout the entirety of each cycle, I take a litany of daily prophylaxis medications because great grandma Bea takes my immune system down to almost zero. There’s also a high likelihood that I’ll need blood transfusions later in the cycles because she steals a lot of your red-blood-cell count. Forget trips to the gym, avoid anyone who sniffs, wash hands always, remain close to soft horizontal surfaces.
What’s happening now?
Today is day 8 of the first 21-day cycle. As promised, it sucks exponentially more than ABVD. And on top of the sucky but bearable physical symptoms of extreme fatigue, nausea, constipation, and chemo-brain, there’s now a new psychological component. The prognosis is still good, MSK and local oncologist are both very optimistic about me going into full remission after this new regimen, but I’m a naturally distrustful and excessively observant human. My now foggier brain hangs on every word and takes exquisite note of each body movement, facial expression, glance, muscle twitch, tone of laugh, time between email responses from every nurse, receptionist, and MD. The act of letting go and trusting the professionals is not easy for me. But I must, the anxiety is real. Having the MSK Lymphoma specialist on my case and reviewing everything daily gives me peace of mind and inspires that much more confidence about this new regimen working.
Timeline
2nd cycle of escBEACOPP ends January 1st. Then a 2-4 week waiting period, then a PET Scan to both examine status and map the radiation area, then if all looks okay radiation for a time period TBD (3-5 weeks 5 days/week is one period I’ve been given).
This was a curve ball, no doubt. And the road ahead is rocky. Thankfully, I’m surrounded by family, friends, girlfriend, and cute dogs. I want for nothing.
MAKE AMERICA WAVE AGAIN
Call me a pragmatist all you want, but if there’s one thing having cancer has reinforced in my belief-system it’s this: the world in which we all reside is zero sum. Now, I know many of you will say that doesn’t quite align with my previous rebuke to Karma. To those contrarian agitators, I will promptly extract my laminated cancer card from my wallet, hold it next to my face, which is now befriended atop by thinning hair, and I will remark with a grin born of unbridled lunacy, “I have chemo brain, take legal action against me at your own peril!” Don’t gimme this “good prevails over evil” malarkey. Evil wins some, good comes around, and then Cosby’s lawyers appeal to a higher court. Paris Accord, yay, uh oh Scott Pruitt!? Red Sox get socked for like a century until ‘04 and now they’re two games up. Sorry. But I’m not. The truth is out there, Instagram just wants you to believe it’s in there. Well, it ain’t. On a long enough timeline, nobody wins, least of all humans connected on the internet, least of all this guy. Case in point, the medical wonder of Chemotherapy.
There are various chemo treatments, some worse than others. The one for Hodgkin’s Lymphoma, ABVD, is incredibly effective, statistically speaking. Curative, they call it in most cases. Curative, you say? Why yes, that’s what we said, us doctors and oncologists and patients and statisticians. Well, that's a bit audacious of you, medical sirs and ladies. Too much good there indeed, let’s reel you in from your glorious clouds of success. Enter: side-effects, the world’s answer to answers.
Chemo’s side-effects are varietal, insidious, and sometimes outright nasty, depending on the treatment. ABVD identifies and axes cells that rapidly spawn and multiply, which sucks for cancer cells but also for your body’s regularly rapidly spawning and multiplying cells — e.g. hair follicles, mucus membranes, white blood cells, sperm (I think?), etc. As such, ABVD comes with sides of hair loss, mouth sores, nausea, fatigue, constipation, suppressed immune system, etc. etc. etc. etc. Because all those side-effects can be lethal, namely the suppressed immune system, we nobly attempt to mitigate them with other drugs (and if you use the internet and common sense, also diet). What other drugs, you say? There’s a long list, and you betchya they too come with a generous side of EFFECTS. The trick, in my experience, has been to experiment within reason to find the matrix of drugs that doesn’t make you want to eat Miller Highlife glass shards off the sidewalk and instead leaves you wanting to lightly pound your receding hairline against a matte-finish painted sheetrock wall. After two infusions, our attempts to adjust the “pre-meds” failed to prevent persistent, maddening hiccups and constipation for 3-4 days after the infusion. The good news is, my third infusion was this past Friday and, eureka, no hiccups. Plus, I shit at least once a day, which is awesome. (I don’t care what Jesus has on your permanent record, it is the inalienable right of everyone to have a rich bowel movement in the AM). We dropped Emend and Aloxi, lowered the dose of Decadron, and added Kytril, a non-steroidal anti-nausea med that lasts about 24 hours, this in place of the steroidal Aloxi that lasts 3-5 days. Alas, success.
Too good to be true? Of course. The trade-off is more nausea, which I combat with some other oral meds and a diet I call, “The Emily Blunt’s diet from The Devil Wears Prada variation.” When her character is prepping for Paris fashion week in the movie, she remarks, “I eat nothing all day and when I feel I’m about to pass out, I eat a cube of cheese.” So basically, whenever I feel I’m about to throw up, I eat something healthy-ish, and that helps. (okay, it’s nothing like Emily Blunt’s diet, but she’s an absolute legend of an actor and deserves mention whenever possible on the internet in a positive light). So we 86’d the hiccups and constipation and I “manage” the urge to hurl — fair trade, if you ask this patient.
The suppressed immune system is another story.
At the 2nd infusion, my white blood cells were low, as they often are during this type of treatment. To combat this side-effect, Oncology likes to use a drug called Neulasta (if you watch cable news, you’ve seen the commercials for the arm patch that injects you 24 hours after chemo like a magical branded stick-on box from techno-hell).
The shit works. Sometimes the only thing standing between you and death-by-infection during chemo is this little android arm bot. Can I interest you in a side of effects with that? The biggest complaint patients have from Neulasta is “minor bone pain.” However, Google told me about a recent study that says roughly 24% of patients given Neulasta experienced bone-pain described as severe, meaning between 5-10 on the pain scale. Generally, this happens 1 - 2 days after the injection. Fortunate old me didn’t experience it in that window. Dee de dee de deee dum dum doop a dop. Not so fast there, sir. I believe you’ve gotten off too easy. Cut to 3AM one week after the 2nd infusion and 5ish days after the tiny arm robot injected me with Neulasta. Pulsating pain more extreme than I’ve ever felt radiated from my lower spine enough to wake me from a deep sleep. I stood up and turned on the light to make sure I wasn’t dreaming, and the pain made me keel over forward and yell out. Ryeley, my dog, looked at me like I’d lost my marbles, and maybe I had. What the fuck was going on? I called the on-call Oncologist and he said that this shouldn’t be happening so long after the Neulasta shot. I had some opiates I could take from an old knee injury, but I wasn't out of the woods from the constipation yet and I didn’t want to mess with that. Besides, I had no idea what the hell was happening. Western medicine wasn’t an option. Nor was Eastern. No stretching nor herbal tincture could quell this demonic flaming balloon pressing on the nerves of my sacrum. This ailment necessitated the miraculous curative effects of…. North Eastern Medicine.
What’s that, you say? North Eastern? Never heard of such a thing.
North Eastern medicine, or NEM, is when your brother is out of town so you phone a friend named Shane with whom you nearly died on Mount Rainier, who you’ve known since you were 12 years-old, at 3:30AM, and the mother fucker picks up on the 2nd ring.
Shane: “What’s goin’ on?”
Me: “The fuck? Are you sitting by the phone waiting for me to call, asshole?”
(Shane is not an asshole, this is how we speak in the North East)
Shane: "I woke up about 2 and I’ve just been lying here.”
Me: “Mmhmm. Ahhhhuchhh!”
Shane: “…..so uhh.”
Me: “I gotta go to the ER. Back is trying to end me. Don’t wanna call an ambo. Sorry.”
Shane: “Okay.”
Shane pulled up minutes later, drove me to the ER at Saratoga Hospital. NEM is also characterized by small towns with very empty ER waiting rooms, even at 4AM on a Friday morning. I was immediately in a room with an IV. The nurse asks me about my pain on a scale from 1-10. In response, I keel over the ER bed standing up and an elongated yarble escapes my lungs as another wave of pain shoots through my spine. She calls it a 10 just to be safe and asks me if I’ve ever had Morphine.
Shane: “That escalated quickly. If you’re gettin’ Morphine, I’m about to become the patient.”
A joke. And for a moment, I laugh and forget about the pain. Maybe laughter really is the best medicine? Another wave of terror and I yell loud enough for the next county to speculate about a sudden peacock infestation. But Shane is a cool customer, he makes no moves to help me or call a nurse. He just sits in a chair smiling and waiting for me to shut up.
North Eastern Medicine is a friend patiently waiting for you to stop screaming so he can make small talk about subjects unrelated to your misery, presumably to distract you from your misery. The nurse punches a code we can easily see to unlock a very important cabinet and Shane gets me in stitches about how lax the security is around here.
The beauty of Shane, besides everything, is his modesty. He’s the CEO of an incredibly successful alternative energy company in its nascency. The CEO. And at no time does he ever make me feel like this whole ordeal is an imposition.
The nurse returns and injects me with Dilaudid, an opiate 10 times more potent than Morphine. 20 minutes later, I feel 10% less stressed out, 40% more nauseous, and 100% equal pain in my spine. X-ray and blood work show nothing. They try Toradol, a powerhouse anti-inflammatory. Within minutes it’s like the pain never happened. I’m fine. Okay, so laughter wasn’t the best medicine, but it helped.
On the way out of the hospital, a stranger walking by waves to me, “How ya doin’?”
Having lived in Los Angeles for 15 years before moving back here recently, I’m distrustful of this whole small-town wave thing.
Better now, I tell him. Still, I don’t wave back.
Shane drives us back to my brother’s house. I throw up in the driveway — side-effects of both Dilaudid and Toradol include nausea — cool. Again, Shane makes no move to help me, just waits for me to get off the ground. I prefer this type of care-taking immensely over someone asking me what I need constantly — those of you who’ve been sick like this know that sometimes being taken care of becomes more about managing the feelings and needs of the caretakers than managing your own symptoms. Either Shane’s a huge jerk or he understands that. He walks the dogs for me and I know it’s the latter. I nap for an hour and he wakes me up for a previously scheduled oncology appointment. I throw up gluten free cereal with blueberries in their parking lot. No one in the oncology office seems to know why my back was so fucked up so suddenly. The speculation is that the Neulasta had something to do with it, but they tell me that generally it happens much closer to the injection, if at all. I google and find over a dozen reviews with various timelines of similar reactions to the drug, some dating up to two weeks or more after the injection.
Doctors are often very intelligent, highly skilled creatures. I know mine are, they’re saving my life and I appreciate them down to their marrow, same for the nursing staff. But the internet is smarter than all of us. Trust no one. Google everything.
Shane walks the dogs again and works from my brother’s house while I gargle Ibuprofen and sleep most of the day. I go see a movie with him and a couple of other guys I’ve known since before I had hair on my balls. My back is still killing me, but the Ibuprofen keeps it at bay. We go back to one of the guy’s houses and I laugh so hard about some bit they tell about a mattress warranty that I realize I haven’t felt the back pain in at least an hour. As Shane drives me home, I debate whether this time with friends is really a cure-all, or if it’s the 2400mg of Ibuprofen I’ve had since I left the hospital that morning.
After Shane drives away from my brother’s house, an old man wearing a neon yellow safety vest rides by on a bike and, wouldn’t you know it, the son of a bitch waves at me. In this moment, I decide North Eastern Medicine may not cure my cancer, but it sure makes the world feel a little less shitty, a little more bearable. And that’s worth its weight in anti-inflammatories any day.
By the time I realize I ought to return the gesture, the man is gone. I wave at the night, watch my breath dissipate in the brisk air, and thank this place. This place which in my youth I was so anxious to leave is now cradling me in my darkest hour with hilarious, loyal friends, a clean place to stay, and excellent medical care. Zero sum, you say? Side-effects be damned, I may be coming out ahead after all.
3 difficult infusions down, many still to go. But spirits are high, thanks in part to old friends and a mysterious cosmic gift — a wave from an old gentleman riding a bicycle quietly into the autumn night.
The lesson here is as obvious as it is simple. Wave more. It will probably freak someone out, but it might just save their whole goddamned life.
PS — there are many more examples of friends besides Shane near and far as well as family doing mind-bindingly awesome things for which I am so grateful (including someone who leaves me video and audio songs). I hope to include some of those stories in a future post. But for now: thank you, thank you, thank you.
Troll, photographed at his residence.
Myoclonic Jerks and Karmic Fallacies
Do you know what a Myoclonic Jerk is (besides my brave new insult to sound smarter than my foes)? It’s a sudden involuntary muscle spasm. When this happens on the diaphragm? the muscle under your lungs? you suck in air like you’ve just seen an ex that fucked your friend too soon after the breakup and you’re at an indoor mall wearing sweatpants and socks with sandals and your glottis vibrates and slams your wind pipe closed and you want to burp or throw up or shit your pants or slap a stranger but instead you simply make a ludicrous high pitched “UUP” sound like a four year-old drunk on Capri Sun? That’s a Myoclonic Jerk. Out of some deranged Neanderthal logic, we call these “hiccups,” but holy shit what a nomenclatural fallacy of cosmic proportions. Myoclonic Jerk is a perfect term. Screw the phonic association. Why must we include the stupid sound of something in its name? We’re humans. We’ve landed on the moon! We’re smarter than that. We’re better. These haunting, insidious, cruel, abject wastes of involuntary muscle fiber and energy deserve a title proportionate to their terror.
Uh, relax, dude, they’re just hiccups.
You’re wrong. They are not just hiccups. They are jerks. They are the biggest jerks. The only name more apt for hiccups than Myoclonic Jerks would be Myoclonic Douchebags. I know this to be accurate and true. This is not fake news.
No sooner had I pressed “post” on the previous blog about all those positive aspects of this ordeal, minimizing the experience as a tiny speed bump in life, overflowing with gratitude, blah blah blah, than that wretched “Uup” sound escaped my pie hole. It was the morning of Infusion Day +1, I had just eaten. Must have eaten too fast, a reasonable assumption for a novice chemo patient. Twenty minutes go by, every 6 or 7 seconds… “UP”. Ginger Ale. Hold breath. Drink water upside down, backwards. Slap self. Yoga chest stretches. Meditate. Please burp. I do, thank god. Let it be over. It must be over. I’m being a baby. Wait. Count to seven. Get to five — “UP” — nooooo. Repeat all known hicc—myoclonic jerk cures for next hour, then two. Just as I was ready to wander into the 30 mph small town traffic outside my brother’s house to end it all under the wheel of a yellow school bus filled with future apocalypse refugees, my girlfriend Alyssa had the wherewithal to google, “Chemo Hiccup Side-effects.” There, in the shallows of the internet, an explanation that the anti nausea steroid meant to last 3-5 days can sometimes induce chronic hiccups in its victims. The oncology nurse called me to check-in and I relayed to her my condition. She knew this could happen. She told me to take a lorazepam and that they should go away in two to three days. Two to three days. “UUP!” Every 6ish seconds. A joke, I ask? Fake news? No, she knows this to be true. And as hour 8 passes with the MJ’s, I understand — the girl had reliable sources for her information. She. Was. A professional.
I take the Lorazepam. We eat dinner, go see The Nun, maybe that’ll scare them away. Oddly, it did. I was fine throughout the movie. Maybe they were over. Maybe a prequel to a prequel to a prequel starring an actual younger sister as the younger self character was the secret cure. But walking into the brisk air outside the theater… “WoohUUP!”
I take another Lorazepam, I assault my bed, press my head into the pillow, and I pray. I continue to spasm and sound like an over-served toddler until I pass out.
2AM, I wake, pee, count. 7 one-thousand, 8 one-thousand. 9 seconds. 10 seconds. 15 seconds. Sigh, it’s over. The hurricane has passed, the house is still standing, I no longer want to be run over by school children googling in seconds what took me four hours to find in a history text book two decades prior. I look toward the street and bid their spirit a silent apology, lie down, and close my eyes.
“HuuuWOOP!” No. no. no no no no. But of course. Yes.
Fucking Jerks.
It’s at this point, the MJ’s still wreaking havoc, staring at the long angular shadow drawn on the ceiling by the neighbor’s porch light, that I realize 2 things:
First, America has this “sanctions” thing all backwards. If we want Russia and North Korea to bend to our will, shutting off the lights and the heat and food and the bank accounts? Kid’s stuff. Inject the water supply with something that gives the leadership or any portion of the population chronic Myoclonic Jerks, and you’ll have nuclear disarmament, favorable trade deals, and personalized gluten free frosted bunt cakes delivered by nude Instagram models in a matter of hours. Watch.
(Okay, let’s NOT do that. But I’m just saying, there’s a quick-fix for all this diplomatic hoopla that doesn’t involve mass casualties.)
The second thing I realized is what I knew instantly when I heard the results of the first CT Scan about the tumor in my chest. It couldn’t have been more obvious, I just put my head down and didn’t think about it. But here, staring at the ceiling at 2AM, my diaphragm spasming every 5 - 7 seconds for the past day and for the foreseeable future, a chemo port protruding from my chest, constipated, jobless, near-broke, soon to lose my pretty actor-hair… the fact finally took root.
I deserve this.
Yes, you read that right. This is Karma, ladies and germs. And not just the chronic MJ’s. The joblessness, the financial stress, the constipation, the complete helplessness, the chest pain, chronic cough, shortness of breath, nausea, confusion over my condition for so long, and abso-fuckin’-lutely — the cancer. I deserve it all. In fact, I’ve had it coming for years.
For those who don’t know me as well, I’m not being funny or throwing a pity party fishing for “don’t talk like that” etc. I know of which I speak. It’s a long story, but suffice it to say that for years, while I was supposed to be in a monogamous relationship, I was unfaithful and dishonest. Not in a conventional, setting-up-franchise-families-in-other-states kind of way, but I betrayed the trust afforded to an intimate couple on countless occasions. I lied about my whereabouts more times than I can remember. 10 months before we were to wed, I got caught. In the aftermath, I endured my share of hardships, panic attacks, losing friends, moving, moving again, again moving, moving again, where do I live now?, etc. But in hindsight, I came out relatively unscathed, with new friends, and a new lease on life. I jumped into a doomed relationship 3 months later. I even shopped around a book proposal about the experience. What a lying, no-good son-of-a-bitch. I hope he gets cancer. Right?
I can rationalize my actions as those of a young man mistakenly subscribing to a convention in which he didn’t believe, sew your wild oats before you settle down blah blah blah, but that doesn’t excuse years of dishonesty and betrayal. And I do mean years. You can’t just skate on that.
The 2nd dumbest part about this is I don’t believe in Karma, at least not in the way it’s been canonized in our culture. This whole 1:1 ration of good begetting good and bad getsya bad is too simple. The Karma new-age part-time yogi fanatics try to put themselves above the “God’s Plan” and “Everything Happens for a Reason” hoards, but it’s all in the same “alas, hide from thine confusion hereth” basket. These concepts are human explanations for the unexplainable. Placebos for the questions our brains are simply too small to answer. I apologize to the religious and mindful practitioners reading who’ve been guided through terrible times with these cozy stories and I’m truly, deeply sorry that I offend all the wonderful people praying for me, but I don’t personally buy these belief systems. Before we had telescopes and microscopes and math and science and ISIS, I might join you in imbibing these faith and karmic energy opiates, but knowing what we now know about what we don’t know, it is dishonest, delusional, and species-wide narcissism to subscribe to anything of the sort. It is the Narrative Fallacy in full effect.
God didn’t give me cancer as part of a grand plan. Neither did Karma. The universe is chaos. We’re all dying. Life is meaningless. Act accordingly.
AND YET — the number 1 dumbest part about this is that while I don’t believe in Karma, I do believe that its teachings are an excellent means of moral betterment. Is that the most hypocritical sentence you have ever read in your life? Can I believe both of those things at once? Jesus, I need a priest. No, I don’t. Despite my suspicion in the scientific basis for Karma and religion, I cannot deny a deep rooted cultural or perhaps innate acceptance of their most basic metaphors — that I deserve this cancer because of something terrible I did in the past. That I am repaying a cosmic debt. What metaphor could be better than every 5-7 seconds to be besieged by a mildly painful and uncontrollable reminder that I royally fucked up?.
“WooUP! (You deserve this)”
4 one thousand, 5 one thousand, 6, one thousand--
“WooCUP! (asshole)”
3, 4--
“AhfuckYUP!(hehehe, bastard)”
AND YET — might I offer one alternative. Could this simply be an invasion of a foreign species?
Of the TROLL variety perhaps?
Could this Troll be drunk on power and bleomycin and railing against our first wave of attacks by stomping on my diaphragm with the consistency only brought forth by the most formidable of enemies? I’m only human, I guess it’s plausible. Pray for me. I have been invaded by a Fucking Myoclonic Jerk.
El Diablo Rojo Going through Customs
Chemo, Day 1: El Diablo Rojo
The good news continues to roll in. Day 1 of chemo went off without a hitch. I was, however, hitched to an IV for around 4 hours via my chest port. During that time, I received saline fluid and various injections, beginning with an anti-nausea med that lasts 3 days, followed by a sequence of 4 chemo meds targeted at The Troll, ABVD. One of them is nicknamed “The Red Devil” (pictured above). Red for its color, Devil for its tendency to induce nausea, hair loss, mouth sores and other terrible things like extensive tissue damage if not inserted into a vein properly or if they give you too much in your lifetime. It’s also labeled as a vesicant, what’s that, Google? Something that causes blistering… fun. But for all the potential bad it can do, El Diablo Rojo is also an insidious, highly effective cancer warrior. It’s kind of like Michael Jackson — he was accused of sexually molesting a whole lotta kids, but he also wrote “Man in the Mirror.” The point is, you can’t have the remarkable without some bad. It’s a zero sum world.
Or is it? I have so much in the positive column, it’s hard not to feel lucky. My cough has already lessened, my eczema doesn’t feel as gnarly today. Medical advances forged over the past three decades, an excellent nursing staff, and an oncologist who is communicative, thoughtful, AND handsome have made it so The Troll doesn’t stand much of a chance. I kind of feel bad for it. Plus, yesterday, I had these two gals, Alyssa and my sister Rachael there to keep me company with various stand up routines, including a joke that The Troll would mistake El Diablo Rojo for alcoholic fruit punch and drink with impunity, and a notable speed skating physical bit from Rachael while wearing my Nike sweatshirt.
Alyssa in the Jumper providing chemo education, Rachael holding the tea.
Birkenstock Olympic Speed Skater, Rachael Charbonneau
After the treatment yesterday, I went home and immediately passed out for 2 hours. I was aggressively tired. But I’ve been so tired over the past 5ish months from the disease itself that the fatigue symptoms from the chemo are old news. Woke up mildly nauseous and still peeing red diablo out. Mmm, right? The nausea wasn’t fun, but it was nothing compared to coming down off Fentanyl last week after the port placement surgery while driving in 5pm LA rush hour traffic.
They tell me the chemo symptoms will be cumulative and get worse over days and months, but right now, I’d like to pass all the well-intended “kick cancer’s ass,” “positive vibes,” and “fight like hell” encouragements on over to the researchers, oncologists, nurses, insurance navigators, past patients, and friends and family members. They’re the real heroes in this saga. I’m just standing on their shoulders and calling myself nauseous, achey, short of breath, and aggressively sleepy.
Stay tuned for future posts, including a prescient creative drawing I made of a troll a few months back. And here’s a creepy sexy hair photo of me the night before chemo because I’m just as vain as the rest of you humans.
Note the cauliflower trapped under the clear bandage. Troll food spiked with poison shhhh.
I HAVE TROLL CANCER
In April of 2018, I began to have severe asthma symptoms while playing soccer. Then, increasing fatigue throughout the day. Soon, I was only able to play a few minutes at a time, and I wanted to be in bed by 7PM. After seeing an asthma specialist, these symptoms appeared related to asthma, allergies, mild anemia, and being generally old. I took inhalers, iron supplements, and continued my vegan diet. But I kept getting worse, and in LAX, on the way to the Paris Gay Games in August, I coughed up remarkable amounts of blood, like horror movie amounts. Cut to a CT Scan which showed a 9cm large mass in my anterior mediastinum (fancy talk for “front of the chest”) leaking into my right upper lung and hanging onto the upper arteries of my heart, brief hospital stay, needle core biopsy, blood work, and voila — here I am, cancer boy, at your service.
The experts tell me it’s Stage 2 Hodgkins Lymphoma. That’s great news. Seriously. Highly treatable, wonderful prognosis. If the plan sticks, after 6 months of chemo, twice a month, maybe some radiation thereafter, my chest will be evacuated of the giant troll and any others that may be hiding. That’s right, I have deemed that the tumor is indeed a troll. None of my doctors concur with my assessment, but in time they will understand.
In the past I’ve used this site as a career landing page so anyone who might want to hire me could see how very cool I am. You can still see that stuff if you click on the menu, but this part of the site is now a blog to provide information and status updates for friends, family, enemies, and cyber strangers alike so y’all can stay in the loop and hear some stories from the not-so-deep trenches of this disease. I’ll be posting periodically to all the “socials” (how I detest that word), so you’ll know when to cruise over here and catch up on your stories.
A couple of FAQ’s to begin:
Why did this happen?
A very unique combination of genetics, karma, and excessive masturbation.
I don’t know, but here we are.
Am I going to die?
Yes, we all will, but probably not from this. The treatment is a gold-standard cocktail of 4 medicines that has been proven over decades to work. I know this, in part, because my dear friend Jackie Burton had the same disease years ago and just celebrated her 11 year cancer-free anniversary. We ran the full NY Marathon in 2015 for the Leukemia & Lymphoma Society. How’s that for irony?
What do I need?
Right now, nada. I’m lucky and grateful to have many family members and friends checking in and assisting day-to-day I’m up to my ears in medical and nutrition advice, survivor stories, and somber looks. I don’t need any more alternative healing suggestions, though I appreciate the sentiments and the talk of energy and vibes and vitamin C enemas. I’m in very high spirits and have a sense of humor about the whole thing. Cancer, tumor, and troll jokes welcome.
Between acting and writing gigs, I was doing handyman and cleaning work to make ends meet, but the disease and its treatment are preventing me from continuing those rewarding trades. So, I will need some financial help soon to help with living and medical expenses. Stay tuned for a go-fund-me page or some such when the time comes.
Where Am I?
My health insurance plan in CA was a scam run by capitalist neanderthals, so I’ve moved to Saratoga Springs, NY to live with my brother. The insurance navigators at Saratoga Hospital were angels in helping me secure an excellent plan when time was not on my side. If there’s a God, she ought to bless them with all good things and endless pumpkin spiced lattes. My brother’s house lives up to my ludicrous tidy standards and there is plenty of space for my dog Ryeley to roam, scamper, and sniff the local flora and fauna.
How do I feel?
I’m tired. I’m short of breath and coughing a lot. I have some pain in my chest from the troll and from this rad port they put in so they can give me chemo without destroying my veins. Other than that, I’m feeling fucking awesome.
Should I reach out?
Sure, but only if you want to. Anyone is welcome to text or call, and if you are into the letter writing thing, I love that, so just ask me for the address and I’d be happy to share it on a case-by-case basis. In my experience, cancer and traumatic life events bring people out of the wood work, myself included, and cause us to recognize the trivial nature of grievances or other neuroses that were barriers to communication before. If that’s the case, vaya con díos and holler at me. Just don’t take it personal if I don’t respond right away or at all, I might lose track of the text or just be neck deep in one of my sister’s home cooked vegan meals.