I have what??
I think I used to feel invincible. Sinewed, joyful and naive in a world of possibilities, a thoroughbred on the racetrack of youth. Occasionally jolted by the death or illness of others, but never seriously faced with my own mortality.
I never expected to have cancer. And definitely not while I was in my twenties. Who does? My twenties were a time to scamper the world, revel in misadventures, lean into love, and not think too hard about how health insurance works. Though this sense of freedom and worldly possibilities was mired by the pandemic - and loneliness, anxiety and despair became frequent guests of mine - it felt like we were all in it together, if often from a distance.
Cancer is a different kind of lonely. At times, I feel as if I'm living in a sterile cloud kingdom suspended just apart from the earthly kingdom that I used to inhabit. Close enough to touch it, to cross over for a time, but not to stay. The atmosphere is only hospitable to me for short stints there, and everything feels alien, impossible, dizzying.
But let me back up to the beginning.
I found the lump while I was massaging my neck. It was hard and round, about the size of a quarter, just above my right collarbone. My finger pads rolled over it, my brow furrowed. It didn’t feel right. I rolled back over it. Weird, what is that? A tight muscle? A swollen lymph node? Over the next week I reached for it, each time hoping that it would be gone. But it wasn't. I googled "lump in lymph node" and the screen populated with myriad possibilities - rheumatoid arthritis, lupus, some kind of virus. Lymphoma.
I was in a proactive healthcare mood after having spent the past few months treating a tendonitis injury, and I figured I may as well get it checked out.
I thought it was probably nothing.
The results from my first ultrasound sprung into my email inbox on a Thursday evening, just before fourth of July weekend. “You have a new test result!” I clicked, expecting confirmation that there was nothing to worry about. Instead, words like “suspicious”, “abnormal,” “large,” “hyper-vascular” and “malignancy” loomed at me from the report. As I stared at the clump of melting jargon I felt like someone had smashed my chest with a cast iron. My heart contracted and my breathing came quick and shallow, my lungs seeking air but finding only cement and razor blades. My vision blurred and my hands shook with adrenaline, preparing my body to fight an assailant of its own creation. I was sure I could feel the mass (gray and snarling) gobbling my body’s resources, metastasizing, slowly strangling my windpipe as it fattened. I lay down on the floor.
When I called the hospital the next day, the doctor was out and wouldn’t be back until after the holiday weekend, so I would have to wait days to talk to someone. That weekend I felt my body acutely: my breath inflating my diaphragm into a flimsy balloon, my heart catapulting blood through my arteries, my cells tingling with the basic and groundbreaking awareness that they were part of something living. I was gripped by something worse than the certainty of something bad: the uncertainty of what, and what it would mean.
The next month and a half were a flurry of hospital visits, needle pokes, blood draws, incisions, phone calls, insurance meltdowns, waiting room jitters and variable moments of transcendent calm, bone-deep weariness, manic proactivity, righteous anger, dark humor, bubbling optimism, gnawing anxiety and equanimity. To find out how extensive the cancer was, I drank a large bottle of radioactive sugar goop that closely resembled a massive quantity of semen. I lay in a big whirring white tube while my arms fell asleep above my head. As I shifted my arms uncomfortably I stared at a ceiling photograph of cherry blossoms, which was positioned just a little too far behind my head for me to comfortably look at. Clearly no one actually laid down in this thing when they installed it, I thought grumpily. Lake Street Dive echoed tinnily through my headphones.
When I received my first tentative diagnosis, I found out from Dr. Pagel. I remember his kind face, clean black sneakers and taco dinosaur socks. The 46 speckled, gray tiles of the linoleum exam room floor. The oily sheen of my mom’s moisturizer on her bony clavicle. Snot clinging to the inside of my surgical mask. Dr. Pagel sat down and introduced himself, then said "So, what's going on?"
"I don't know, you tell me" I replied weakly. He chuckled good-naturedly,"we'll get to that." He first asked me some questions about my life, my work, what I liked to do, as if we were new acquaintances feeling out a friendship in a coffeeshop. The galloping in my chest lessened some, but I was anxious for him to tell me what was going on.
After some chatter, Dr. Pagel paused and met my eyes steadily, his gaze blue and clear and tender. He said that until the biopsy, they wouldn't know for sure what I had, but he was almost certain it was some kind of lymphoma. To explain what lymphoma was (broadly, a cancer of the blood, like leukemia) he personified my lymphocytes (white blood cells involved in the immune response) as little Saras traveling around my body between the lymph nodes (those being my various living destinations in Seattle, Truckee, Paraguay etc.) and fighting off bacterias and viruses (climate change) in the body (on the planet). I wildly imagined an army of tiny Saras zooming through my veins and punching hairy green bacterias shaped like Mitch McConnells. He said that for some reason the lymphocytes were now refusing to die in some places and were growing out of control. There was no metaphor for this part. He swiveled around to his computer and pulled up my PET scan. The four cancerous areas in my neck and chest stared at me from the screen, blue and red like holiday lights. Red meant it was fast-growing - that it had greedily gobbled the semen sugar goop I had fed it for the scan. The lump in my neck, the one that I had felt, was a bright twizzler red. The others were blue - not growing quite as fast yet. I looked away from the monitor. He said it was probably stage two Hodgkin's lymphoma.“This is just bad luck,” he said. “You didn’t do anything wrong.”
I was externally holding it together until he told me I would lose all of my hair, which somehow seemed like the worst part. That everyone would know I had cancer. Or at least that they would wonder. That they would think of me as sick. That I would have to explain. I burst into tears. Dr. Pagel let my tears flow and then said gently, “You know, I’ve treated a lot of lymphoma patients. A lot of young ones like yourself. And even though this is going to hopefully be the hardest thing you’ll ever have to do, and you’ll never want to do it again, you’re going to learn a whole lot about yourself. You’re going to overcome things you never thought you could, and find a strength you didn’t know you had. You might even find that there is something to be grateful for at the end of all of this.” From him, the words didn't sound trite. I found that I believed him.
But in the moment, the promise of lessons learned felt meager. I felt like I had been thrown from a lifeboat and was tumbling through the surf, unmoored and nauseously mortal, salt water in my eyes and lungs and unsure which direction was up. The universe felt so chaotic. Delta was on the rise, my mom's health was declining, my workplace had been hacked, I was dealing with persistent injuries and now I also had cancer? It was starting to feel like I had been caught in a universal shitstorm. Like all the external chaos had manifested inside of me.
The next day, I went back to Truckee to finish out my fellowship and pack my stuff for a couple of months in Seattle. Strangely, I woke up feeling transcendent. I wrote, “I think I’m at a leaping point, and am about to jump into something beautiful and hard and ego shattering." As I wandered out into the Sierra sunlight I felt that I carried with me a shield of celestial energy, one that had immolated the fear and anxiety in a blinding effluence of light. I felt inexplicably powerful. It was very strange. That day, my co-workers threw me a surprise graduation party with an incredibly endearing kazoo performance of pomp and circumstance, pastries and drinks from my favorite coffee shop. I felt overwhelmed with love and gratitude and, for a change, I cried tears of joy.
I started to meditate religiously. I sat in the forest outside my apartment and closed my eyes, imagining sunlight pouring into my body. One day while driving back to my apartment, I mulled over how cliches are cheesy and overused but actually usually still good advice, which is why they are cheesy and overused. The particular phrase I was thinking about was making lemonade from lemons. Eye-roll, but at the same time... What could I take away from this? Wouldn't it be kind of fun to wear different wigs and see what I looked like bald? Couldn't I gain wisdom that usually take decades to accrue? I could definitely get out of a speeding ticket if I wanted to. At that moment, I drove right by a lemonade stand. I blinked out of my reverie and pulled a U turn, then parked and paid the two little girls the $6 I happened to have in cash for a pink lemonade and a chocolate chip cookie. They had only asked for $.75 and were ecstatic. So was I. It felt like the universe was affirming me.
But my numinous optimism was not to last.
A few days before I was set to start treatment in Seattle, Dr. Pagel called me. He told me that preliminary results from the biopsy were indicating that I had Hodgkin's lymphoma, as he had suspected. I felt relief. A diagnosis, finally. We had a plan, and it sounded manageable. No more curve balls, now I just had to do the thing.
The next day, I saw his cell number pop up on my phone again and my chest contracted with apprehension. “Sara? It’s Doctor Pagel. I’m so sorry,” he said, sounding pained. “I was so confident that you had Hodgkin's, but we looked closer at the biopsy (the second one that I had had because the first was inconclusive) and you actually have a different kind of lymphoma, a really really rare kind.” He said a long name that I immediately forgot, but that I now know is Primary Mediastinal B cell Lymphoma, a kind of aggressive non-Hodgkin's lymphoma that typically affects young women. My outcomes would likely be similarly favorable, but the treatment was going to be a lot more intensive. Instead of three hours of chemo every two weeks in an outpatient clinic, I would have five days of continuous chemo in the hospital, 24 hours a day, every three weeks for six treatments. “Five days in the hospital??” I croaked incredulously. I had never spent a night in the hospital in my life, let alone the 30+ days that my treatments would add up to in the coming months. I asked a few questions which he answered patiently, then I took a deep breath. “Ok,” I said wearily, “I just need to recalibrate. Thank you Dr. Pagel. See you next week."I hung up and let out a deep, frustrated sigh, slumping low in the drivers seat. I rested there for a moment, and then started the engine.
Though it felt like I had traveled years since my initial ultrasound, through a Pollocked pandemonium of physical, emotional and spiritual realms, all of that had merely been the prologue. Only now was I turning the page to chapter one. And I had no idea how the story would unfold.