My Chemical Romance (Redux)
My Chemical Romance (Redux)
Revisiting the violent origins and gory details of chemotherapy treatment, specifically mine.
My last chemo treatment was on Friday, Aug 25, 2023, so pretty much one year ago. We forgot to mark the occasion. As you might imagine, there’ve been a lot of more noteworthy milestones of late: the one-year anniversary of my diagnosis, six months of remission, oh and of course my daughter, with whom every day feels like a birthday (she turned nine months this week). There’s nothing like hearing your baby girl’s laughter each morning to make the worst time in your life feel like a distant memory.
But lest we forget, the whole reason we’re here in this space, exchanging whatever it is we’re exchanging (thanks for that, btw), is cuz cancer. Every once in a while, memories come rushing back—the pit in my stomach when the ER nurse first said the word “masses”; the site of firemen in my living room when we called 911 after complications from my first chemo treatment nearly killed me; the crimson tint of my piss from the drugs they gave me every three weeks for eighteen weeks.
I’ve been writing this newsletter for over a year now, and there’s something like five or six times the number of readers as there were last summer. When I first started Healings, one of my goals was simply to raise awareness around this disease—to try to shed some light on what the experience of having and fighting it is actually like, in the hopes that might help someone if they or a loved one ever has to go through it. Now that there are so many more of you, I figure it makes sense to occasionally republish some of that stuff. The essay I’m re-running today is about the history and gory details of chemotherapy itself, a topic I was completely ignorant on until about my third treatment. I do not recommend that approach.
Here on the other side of things, I try not to lose sight of how lucky I am to have made it through all of this basically unscathed. The one exception is some lingering neuropathy in my feet (the cause of which you can read about below), but I’ve been able to get back to running and bike riding, so that’s more of a minor concern. In 2023 alone, over 600,000 people died from cancer in the US. I wasn’t one of them.
My Chemical Romance
Originally published August 3, 2023
“How’d you like a prosthetic testicle?”
Maybe he didn’t say it exactly like that, but it was close—casual, jaunty, blunt. This was 11 years ago, and I was meeting with my urologist-surgeon in his office, still in shock from my testicular cancer diagnosis the day before, and a mere 48 hours from the orchiectomy I’d been told was necessary. The procedure would entail the doctor tunneling in through an incision in my abdomen before extracting the cancerous testis. While he was down there, he could swap in this prosthesis, Indiana Jones-style. Would I want that?
“Huh?” is what I remember thinking to myself as he handed it to me, gently fondling this little squishy-hard oval to assess its verisimilitude. As the doctor explained, it didn’t do anything—didn’t produce testosterone or semen or anything like that. But as an aesthetic replica it seemed plausible enough, and that’s not nothing. For a lot of people, it can mean the world to reclaim the things that cancer took—breasts, hair, testicles—and if that means implants and wigs, then fantastic. Cancer can be like Red Rover that way.
But I didn’t mind the idea of losing one of “the boys,” as my ultrasound tech had referred to them. For one thing, let’s face it: There’s nothing attractive about a man’s scrotum; you can’t disfigure it more than nature already has. But more importantly, for me: whatever scars cancer was going to leave me with, whatever that asshole took, I wanted to preserve the evidence. Red rover, red rover—go fuck yourself.
So yeah, I declined the artificial testicle. Curiously, it turned out to be the only medical decision I was offered during the entire process.
Because as for the procedure itself, the actual removal of the thing—there was no choice given, no set of options. One day I was a guy who rode his bike to work with his dog in a basket, the next day I was being told I had cancer, and the next day I was having my genitals operated on. I’ve since learned that this is often how cancer works. Once you’re diagnosed, the clock starts ticking, and life-or-death decisions need to be made in a matter of days, sometimes hours, regardless of the state you’re in or your capacity to fully comprehend them. This is when the notion of informed consent can get a bit fuzzy.
When I was diagnosed with lymphoma, we didn’t sit around with my oncologist discussing options. At no point did he say anything along the lines of, “Give it a think and let us know what you want to do.” Nope. It was: You have an aggressive form of cancer, and we’re going to treat it aggressively, and that means chemotherapy, which starts in 10 days.
Now I like my oncologist quite a bit, and I’m glad he took the approach he did, pushing me gently but assertively toward the best treatment plan, even though he knew the agony it could inflict, not to mention the risk. I was in so much pain by then, truly in mortal fear for my life, that if he’d told me I needed to jump in front of traffic or watch a Real Housewives marathon to get some relief, I’d have done it.
But cancer treatment can be brutal, and chemotherapy especially so. Up until just recently, I was naïve about what “chemo” even was, my functional definition for it amounting to “the thing they do when cancer is bad.” I’ve since done a bit of reading and also had quite a bit of first-hand experience. If my doctor had explained the history of this form of treatment, if he’d exhaustively run down all the potential risks, had told me that these drugs, with their “narrow therapeutic index1,” can trace their origins to the mustard gas attacks of both World Wars—if I’d known all that, would I have changed my mind? Of course not. But more to the point: I’m not even sure I had a choice.
It really does start with mustard gas. As recounted in The Emperor of All Maladies, Siddhartha Mukherjee’s awesome, Pulitzer-winning “biography of cancer,” it was shortly after World War I that a husband-and-wife team of pathologists, Edward and Helen Krumbhaar, made note of the fact that, among those who survived the gruesome initial effects of a mustard gas attack—blindness, blisters, lung damage—there lingered more subtle symptoms, including severe anemia and susceptibility to infection. This, they surmised, was due to the gas’s ability to specifically target bone marrow, which is where our red and white blood cells are made. It was a huge discovery, but no one really noticed at first because it was 1919 and there was a lot of other stuff going on.
It wasn’t until more than twenty years later—again, as part of a clandestine war effort, that being how most of these types of things are accomplished—that a new team of scientists further explored the Krumbhaar effect, ultimately proving that nitrogen mustard, administered intravenously, and in small enough doses, could kill cancer cells in mice without, like, killing the mice. In 1942, this team administered 10 doses of nitrogen mustard to a human lymphoma patient2, whose tumors abated.
Combined with concurrent discoveries by one of the heroes of Mukherjee’s book, Sidney Farber, who pioneered the use of aminopterin to treat childhood leukemia, it was the birth of modern chemotherapy. Henceforth, cancer was no longer the exclusive purview of the surgeons who excised tumors, and thus the field of oncology was born. Doctors could now use drugs to kill cancer cells. The question was, which drugs, and in what doses? After all, as Mukherjee notes, citing the 16th-century physician Paracelsus, every drug is a poison in disguise, and conversely, from the perspective of an oncologist, every poison is a drug in disguise.
The history of chemotherapy, then, became a history of turning poisons into drugs, of doctors and chemists and eventually politicians and philanthropists all working together—an effort that colloquially became known as the War on Cancer3—to discover which combinations of drug-poisons, administered over what length of time, would produce the best outcomes. What they eventually realized is that because cancer is such an immensely varied disease, each type required its own unique regimen, some lasting just a few weeks and others months, sometimes even years. More than a century into this war, the treatment options are now manifold, and the advances have been tremendous. But from a patient’s perspective—for those of us who actually have to undergo this treatment—it doesn’t always feel that way.
R-CHOP. That’s what it’s called, my personal chemo cocktail, my drink of choice. Imagine it being slid across the bar, or better yet imagine it served up in a martini glass, condensation beading. And that red tint? That’s not grenadine—that’s doxorubicin, known by its nickname “the red devil” on account of its alarming red tint and even scarier list of side effects, which include hair loss, mouth sores, nausea, vomiting, and a half dozen more, not least of which, hilariously, is that it can increase the risk of developing new types of cancer. Talk about fighting fire with fire.
R-CHOP is one of well over a hundred different chemo cocktails, each designed for specific cancers and their subvariants (e.g. there are over a dozen different types of lymphoma). As with all elaborate cocktail menus, the fun is in the naming. There’s BEP, CMF, and M-VAC, used to treat testicular, breast, and bladder cancer, respectively. There’s TPF, FOLFOX, and FLOT, used for head and neck, colon, and esophageal cancers. The list goes on. In each case, the names serve as acronyms, with each letter or group of letters referencing a specific chemical or drug. It gets confusing, though, because many chemicals go by several different names. In the case of R-CHOP, doxorubicin is accounted for by its other name, hydroxydaunorubicin, whereas in ABVD it’s going by the alias adriamycin. Got all that?
So in R-CHOP, the drugs in question are: rituximab; cyclophosphamide; doxorubicin, aka hydroxydaunorubicin, aka adriamycin; vincristine aka oncovin; and finally prednisone, a steroid that’s used to treat everything from arthritis to asthma.
Having now undergone four of six treatments of R-CHOP, I’ve developed a relationship with each of these compounds through their unique side effects and, in one aforementioned case, captivating pantone. For example, I’m fairly certain, based on its side-effect profile, that it was the rituximab4 that prompted some diluvial amount of mid-treatment sweating during my first dose, waterworks so intense I had to pause to change out of my clothes and into a gown. I actually have only the vaguest recollection of this even happening, but it was apparently so noteworthy that it made an impression on my chemo nurse, Matt, who brought it up a few weeks later, and that dude’s presumably seen everything.
Prednisone’s fun. Unlike the other agents in my cocktail, it’s a steroid, and a frequent supporting player in chemo regimens, serving to enhance the effects of the other drugs. With R-CHOP, you take prednisone on the day of treatment and for four days after, and one of its main side effects is insomnia, which is especially cool because a side effect from each of the other drugs is fatigue, so you feel tired but you can’t sleep5.
Cyclophosphamide is the one that’s specifically descended from nitrogen mustard, and like a lot of chemo drugs it’s a warhorse, having been a reliable part of the chemo rotation for decades. Doxorubicin, as noted, is Lifesaver-red, and turns your pee orange for several days following treatment6.
Finally, there’s vincristine. This drug has objectively the most mellifluous name of the bunch (not exactly stiff competition), which jibes with the fact that it was originally derived from the Madagascar periwinkle, a pink version of the flowering plant whose nickname is “bright eyes.” Talk about a misnomer, though, because vincristine suuuucks. On top of packing the same side effects as its bunkmates cyclophosphamide and doxorubicin (nausea, vomiting, hair loss, etc.), this drug-poison can also impact your movement and motor skills, causing nerve pain, peripheral neuropathy, and difficulty walking. These in particular have bedeviled me, not because they’re the most intense or painful in any specific moment—plenty of other side effects have competed for that award—but because they’ve lingered and can linger for months and in some cases never go away. As my oncologist explained a few weeks after I’d already started my chemo journey, he once treated a concert violinist who, because of vincristine and the neuropathy it caused, could no longer play her instrument at a professional level, and had to switch careers.
Are such sacrifices worth it? Well, as they say: your mileage may vary. I was speaking to a friend recently who survived throat cancer. His passion is also music, and when he learned that one of the drugs in his proposed cocktail, cisplatin, came with a near-certain chance of hearing loss, he started researching alternatives, ultimately opting for an immunotherapy drug with an inferior efficacy rate, because it was more important to survive cancer with his hearing intact, even if that meant reducing his chances of surviving it at all.
Now that’s a tough choice to make, and I’m not sure what I would have chosen if I were in a similar situation. But then again—was I? Per the example of the concert violinist, there’s a non-zero chance that vincristine can produce permanent neuropathy in the feet and fingers, nerve damage so bad I’d no longer be able to type. But writing, which for me is synonymous with typing, is, I would hope you could maybe sense, very important to me. If I was told I might lose my ability to type, what would my response have been? I suspect I would have given it more thought than I gave to that prosthetic testicle. But we’ll never know. No one told me at the time, and I was too sick to do the research.
Meaning just a smidge too much can kill you.
Spare a thought for this patient and countless others like him, suffering from cancer and other maladies, who lived and died before the advent of the Nuremberg Code and modern medical ethics generally. For that matter, while we’re on the topic of human experimentation and the blindspots of Western medicine, let me quickly recognize that up until only recently, and thus for almost the entirety of the national cancer research efforts that took place throughout the 20th century, the practice of medicine was basically the exclusive province of white men. Lots can, has, and should be written about this. Mukherjee, for his part, goes deep on the story of the radical mastectomy; the obsessive and eccentric surgeon who pioneered it in 1894 (!); and the surgical culture that remained fixated on it for decades, including for several disturbing years after it was demonstrated that the disfiguring procedure was no more effective in curing breast cancer than its far less invasive counterpart.
This probably explains why everyone likes to refer to one’s “battle” with cancer
Rituximab or rituxin is actually an immunotherapy drug, and the most recent addition to my regimen, which used to be just “CHOP.” Whereas chemotherapy is about using chemicals that specifically target cancer cells, immunotherapy is about manipulating the immune system so it can target cells on its own. I’m still learning about all this stuff, but based on my limited understanding it seems that immunotherapy is the future of cancer treatment.
Bonus: If you’re type-1 diabetic like I am, prednisone wreaks havoc on blood sugar, driving it into the stratosphere, which itself has several unpleasant side effects.
Oh and fun fact: Because Danielle is pregnant and because highly toxic chemicals are coursing through plus being discharged from my body for several days after a chemotherapy treatment, I am, per doctor’s orders, required to sleep in a different room and to flush twice every time I use the bathroom, lest any chemical ghoulies linger.
This is the Healings Newsletter. We thank you for reading. Healings is free for all, but you can show your appreciation for the work we do with a paid subscription. A portion of all proceeds goes to the Patient Advocate Foundation.
Healings is written by Garrett Kamps and edited by Tommy Craggs. Ayana H. Muwwakkil provides art direction.
Healings is about illness, recovery, spirituality, and related topics, and began in the summer of 2023 as a chronicle of Garrett’s battle with cancer. We make no guarantees that it will hold together, thematically speaking, now or ever.