For an immortal mythical creature and supposed beast of great beauty, I have always thought of the phoenix as cursed. To die over and over, forced each time to crawl from the charred husk of your former self seemed to me a cruel and unusual punishment.
Chemotherapy has put the phoenix in a new perspective.
My chemo comes in bi-weekly cycles so for now, life does too. Each round consists of a four-hour infusion, followed by another 46 hours connected to my take-home pump. Afterwards, I can expect to take another two to three days of recovery before I start to feel a bit like a human again. Five days of darkness, a short dawn, and a week of sunshine before I head back into the dark once more.
The effects of chemotherapy are cumulative. I begin each round knowing that it will likely be worse than the last. I make no plans beside hoping to find the appetite to put food and water into my body and the fortitude to keep it there. I take few visitors on my chemo and recovery days – a combination of the unpredictability of how I’ll feel and the pride I can’t shake of not wanting to be seen so weak and fragile.
My bi-weekly walk through the dark begins on a Wednesday morning. Nausea is my constant companion. Ever present, I can dull it with medicine but even a week out from disconnect I’m left with a constant quease in my gut. Not enough to be worth meds but enough to remind me that even my good days are relative to what life was before. I have a few options for nausea control as far as meds go, but anything beyond my first line of defense (zofran) has the added bonus of making me very drowsy, dull and lethargic. When combined with the chemo induced exhaustion, I sleep a lot.
The exhaustion is less predictable. Though I know to expect it, I never know quite when it’s going to hit, and when it does exhaustion is the only word that comes close to doing it justice. The naps aren’t a sleepy, drowsy snooze but a full body coma. Every muscle, every bone, every fiber of my body screams for a respite. I’ve lived through football double days, 26-hour Dance Marathons and even Navy SERE training but this exhaustion is more complete than anything I’ve experienced before. Chemo doesn’t ask politely for you to take a nap, it demands payment in conscious hours of your life.
The most concerning of my major side effects is the cold-induced neuropathy, an outcome of my platinum-based chemo drug. When my hands and feet get cold, I lose sensation. It begins as an uncomfortable tingling feeling of pinpricks and burning, then numbness in my hands or feet. Cold drinks have a velvety texture, an expression of the pinprick feeling in my mouth. Even colder drinks result in a lidocaine like response, drooling and all.
I keep gloves near the refrigerator and avoid all things cold for at least a week, but this side effect is the cause for the most concern in the oncology office, as with many patients it’s often permanent and irreversible. Every visit to the doctor includes at some point, the button test, in which I unbutton and re-button my shirt to show that I still have reasonable dexterity in my fingers. It turns out pumping platinum into my body isn’t nearly as cool as it first sounded. For now, this sensation usually fades after a while, but with each round, and every brush with cold, I’m left wondering if this will be the time the feeling doesn’t return.
I’ve always thought of my mind as my last sanctuary, the last place where I maintain complete control, but now even that’s gone. The most offensive of my side effects is the “chemo-brain” a mental fog that makes everything hazy and hardly fades between rounds. I’m often asked with all my newfound couch time, what my current Netflix binge is or all the movies I’ve been catching up on, but the truth is, most chemo days I often don’t even have the energy or focus even for that. It’s like living with a blanket over my body, mentally and physically. I find myself walking into rooms and having no idea what I came for. It’s incredibly difficult to recall words and names. I feel like I’m living in an unending game of catch-phrase, but instead of not being allowed to say words or names, I just can’t find them.
As Monday rolls around the week following my chemo, the sun starts to shine through my many storm clouds. My nausea, while still present, drops to a level that I can adjust to with little to no medicine. The exhaustion becomes more of a standard tiredness that I can sometimes push through, rather than an all-encompassing fatigue. The neuropathy fades, and I’m able to slowly start ingesting cold foods and drinks.
From the outside, my good weeks probably seem pretty unspectacular. I’m not racing Formula 1 cars, or skydiving in an attempt to finish some epic bucket list in case I kick mine. I watch football with friends, mostly from a couch, once from the stadium. I’ve brewed 3 beers with my dad. Though I can’t drink them right now, they’ll be waiting when I’m done with treatment. I’m reading new books and rereading old favorites. I made it to a wedding I’d been looking forward to for a long time. The pre-cancer-helicopter-flying-me probably would have thought this a pretty mundane way to spend months of my life.
The reality is that even on my good weekends, the ones just before my next round of chemo I still fight low energy levels, mild nausea, and my ostomy. As my rounds progress, I find my side effects creeping more and more into the “good days” in my non-chemo weeks; storm clouds on my sunny days. Pre-cancer me would call these less than mediocre days but I now have a different perspective. I know that the sun doesn’t shine any brighter than before and the wind doesn’t smell sweeter, but after a week in the dark, I could swear they do.
The idea of immortality has never attracted me. To watch the world as you know it wither away behind eyes of eternal youth seems a much bleaker fate than death. But life lived in two-week bursts has made me realize that maybe the phoenix isn’t cursed after all. The beauty of the phoenix isn’t in its immortality but its rebirth. The phoenix isn’t forced to live the same life over and over, but with each end it gets to start fresh and try again. With each death, it climbs from the ashes of its former self and gets to look at the world anew.
Ultimately, death is what gives meaning to our lives. The Sistine Chapel wouldn’t be nearly as impressive if Michelangelo had a thousand years to complete it. Our greatness is not limited by our mortality, it’s strengthened by it. The measure of a man is not the number of days spent but what good can he do with the time given. I want my life to be measured in ashes, not dust.
The truth is I’ve never felt so alive as I do after chemo. Though I know it’s all a bit beyond my reach right now, I’ve never wanted so badly to run, to climb, to swim. My ambitions have never been greater. Long term, my post treatment life is more than a little uncertain, but I’m making plans. And contingency plans in case those fall through. And backup plans for my contingency plans. The world is suddenly my oyster, all it’s pearls mine for the taking. As the number of chemo sessions ahead of me dwindles and the number behind me grows, I can only hope that when this is all behind me, the way I feel between each round now remains. I want to spend all my days in the sun. With the rest of my time, I want to burn brilliantly. To make ashes, not dust.
For now, I still live a life of duality. A week in the dark for a week in the light. Just as I start to feel my best, and some semblance of normalcy returns, I have to steel myself to once again walk into the darkness. But now, with each round, as I prepare to take the next dose of fiery poison in the port to my heart, I do so knowing that I will again rise from my ashes.
“I would rather be ashes than dust!
I would rather that my spark should burn out in a brilliant blaze than it should be stifled by dry-rot.
I would rather be a superb meteor, every atom of me in magnificent glow, than a sleepy and permanent planet.
The function of man is to live, not to exist.
I shall not waste my days trying to prolong them.
I shall use my time.”
– Jack London