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.