Gone Platinum

A little chemo can go a long way.

When I signed up for this head and neck cancer, I made clear my wishes: no chemo. Maybe a little high-tech robotic surgery, almost certainly some fancy targeted radiation to clear out the tumor, but let’s just skip the chemotherapy, okay?

Strangely, the guidelines on treating my particular “locally advanced” cancer did not adhere to my request. Instead, they rather consistently recommended a nasty old chemotherapy agent known as cisplatin to accompany my radiation treatments.

Like most drugs, cisplatin has a fascinating history. Derived from the precious metal, platinum, it was first created by an Italian chemist, Michele Peyrone, in 1844; and then when some platinum electrodes accidentally leaked cisplatin onto his bacterial experiments in 1965, Barnett Rosenberg made a remarkable (and remarkably lucky) discovery: cisplatin inhibits cell division. Since its approval in 1978, cisplatin has become one of the most widely used chemotherapeutic agents in cancer treatment. It works. It radically improved cure rates in some almost-untreatable cancers. But, of course, there’s a catch: it’s toxic.

Now, when I tell people that I did not win the “no chemo needed” lottery with my cancer, a common question is: “ARE YOU GOING TO LOSE YOUR HAIR?” This increasingly strikes me as amusing, not just because my attachment to my thinning, prematurely gray tresses is rather modest, but because I would happily lose my hair for a few months rather than deal with the actual toxicities of cisplatin! Cisplatin pounds the kidneys (I trust the odds that my 53 year old kidneys can handle this, though), impairs bone marrow production (ditto), can create long term neurologic problems like peripheral neuropathies and hearing loss (I worry about this a lot!), and, most notoriously, almost always triggers nausea and/or vomiting in its lucky recipients. Somehow, on the basis of a handful of conversations, I had talked myself out of this latter concern being a real problem for me. That was a mistake.

Most chemotherapy regimens include multiple agents given in pulses; for my type of head and neck cancer, however, cisplatin is given as solo therapy to augment the effect of the radiation, usually in a maximum dose every three weeks. Due to my fears of triggering a long-term neuropathy after one of these big doses of cisplatin, I talked my medical oncologist into an increasingly-used alternative dosing schedule that drops the dose to a third but administers on a weekly basis. (Note: interestingly, I find that being a physician sometimes means that my highly expert medical teams take my suggestions seriously, which seems rather dangerous to me.) A steroid (dexamethasone) and two anti-emetic agents are infused along with cisplatin, all in the name of preventing the dreaded nausea and vomiting. They worked great for me — for a day.

That brings me to the real point of this post: a Mike Tyson quotation:

I had a plan! I knew that the combination of cisplatin and radiation would eventually break down the lining of my mouth and throat, and every swallow would hurt, but eating was going to be my JOB. No matter how much it hurt once I got a few weeks into my chemoradiation, I was going to eat! Maybe a third or half of people undergoing this treatment end up needing a PEG tube to allow direct feeds into the gut, mostly because choking down food and liquids becomes so painful. I get it. But the story I like to tell myself is that, despite enjoying a good whine from time to time to draw attention to how bravely I manage a given malady — seriously, how many dads suffer a burst fracture of their 12th thoracic vertebra an hour before their daughter’s camp-out birthday party AND STILL ARE A FULL PARTICIPANT IN THE CAMP-OUT BIRTHDAY PARTY??? — I am closer to Mike Tyson than the average American cancer patient in the toughness department. I can stick to a plan despite being punched in the face — or throat, in this case. I wanted to believe this. This became the Hero’s Tale I told myself: “I will be that guy who bravely gets down his meals despite horrendous pain (and only grimaces a little, to make sure everyone sees how brave I am).” I actually started to look forward to this process, in a perverse sort of way, just so I could look forward to something. In retrospect, I believe this was naive.

My plan involved my dear wife handing me whatever nutrition I needed to swallow every 3 hours or so and just getting it down. I mean, if it was ground up turkey meat and kale and astragalus powder and ricotta cheese in a gloopy froth, my taste buds will be shot, anyway, and how much worse could it hurt than trying to eat after my tonsillar biopsy? What I failed to account for was my new friend, cisplatin.

I got my first cisplatin infusion on the Tuesday before Christmas. Loaded up with long-acting antiemetics, I felt pretty good when I got home. Well, a bit weird, like I had drank too much the night before and taken an extra zofran to ward off the hangover nausea. My stomach, though, was okay. I ate heartily. Wednesday, though, was a bit rough. No appetite at all upon waking. “Ahhhh,” thinks I, “perhaps this will not be as simple as I thought.” I got down a thousand calories or so with great effort through the first half of the day. My target, however, is 2500 calories/day, one of the ironies of cancer therapy being that it creates a hypermetabolic state demanding more calories than ever just to maintain weight. Cruel.

Things were not sitting well in my gut as dusk approached. I felt like I had gotten one beer in too deep in a college drinking game. That bowl of food my wife had set next to me, that I was just going to eat, because “it was my job”? No room at the inn. By nightfall, I had to duck out of the house - fast - not sure if some hard-won calories were about to exit my body, and trying to spare the members of my family who happen to be particularly sensitive about puking.

‘Twas a delightful night in our north Seattle neighborhood, 20 degrees and an inch of snow and ice coating everything. I had to stop a couple times and drop to the icy ground, my heart pounding and a cold sweat surfacing under my layers. I am not one of those people who are okay with vomiting. I am not okay with vomiting. For a few minutes there, I saw a certain appeal to spotting a fire in a neighbor’s house, so I could just run into the house, save the family, and die a hero rather than experience another moment of feeling quite so awful. Amazingly, I did not puke; less surprising, no houses spontaneously ignited. I felt a bit more solid on my return home. A compazine, which is an old-school nausea medicine I never prescribe due to its litany of weird side effects, actually did the trick. Yes, my thighs jerked uncontrollably while playing Hearts with my daughters, but misery abated. I slept.

Much of Thursday was spent feeling angsty about how on earth I would consume 2500 calories a day feeling this nauseated, regardless of how my imagined inner tough guy could handle the imminent oral pain awaiting me in a couple weeks. I still don’t have an answer to this question. Calories rose from 1000 on Wednesday, to 1500 on Thursday (thanks to a few compazine doses), to 2000 on Friday (no compazine needed), and back to target over the weekend. I actually almost possibly rather enjoyed a few Christmas meals. In fact, I feel rather “normal” now that the cisplatin has settled down.

That’s really the thing about a cancer treatment course. I am going to call the way I feel “normal” because today I am enjoying my life and not on the verge of vomiting. I am writing. I will get some work done. Our family is planning a little outing into the city this afternoon. How wonderful is that?

Yes, I am noting a shift in my prior occasional neuropathic symptoms (courtesy of said T12 fracture) the past 24 hours, and while that should be way too early for cisplatin toxicity, it’s easy to feel some dread about that.

Yes, the back of my mouth has this feel and taste (and smell, I suspect, although I have been terrified to check my own breath for fear of discovering DEFCON-1 level halitosis) like a baby vole crawled up inside it and died.

Yes, I have strange fever-like sleeps every night where some feature of my cancer — hospitals, trial data, clinic visits — is on a dream loop that repeats itself for hours and is something less than restful.

And, to be fair, waking up is not exactly reassuring. Where am I? Right. Not home in Hawaii. No. Early in the process of poisoning myself so thoroughly that I might well never know anything like “good health” again. Soon to have the lining of my mouth and throat start to break down in earnest. Cisplatin day #2 bearing down on me.

I try to shake off those thoughts quickly. I can’t even think about being home. I have always loved the Pacific Northwest, having spent many happy months traipsing over its backcountry… in summer. Now I understand why those planes from Seattle are always so full coming over to Hawaii in the winter. The thought of that soft, warm air on a sunny upcountry morning is more than I want to entertain. It doesn’t help me right now.

What I have is chemoradiation in Seattle mid-winter. My family has risen to meet this challenge more impressively than I could have imagined; I owe them everything. A newly-met neighbor chisels out 20’ of ice from behind my car to help me make my radiation appointment. Another offers to loan us a mattress, buy us a printer, dig up a muffin tin. Friends and patients call and text regularly to check in, to see if they can help out in any way. The weather has warmed up again, and the inevitable Pacific Northwest rain nourishes the huge western red cedars around our house. I try to keep my attention on these blessings.

Life goes on. The first week of seven has been lived. I have a better idea of what to expect in my next week. I might not want to admit it, but one thing is nearly certain: I’ll be punched in the mouth again. We’ll see how I do.