Cancer Struck Both Of Us A Month After We Got Engaged
The tragic (but hopeful) story of a couple’s unexpected double diagnosis.
Ketut Subiyanto, Md Babul Hosen, dzika_mrowka | Canva If I had pitched it to Hollywood, I would have gotten laughed out of the room for being ridiculous. In December, my fiancé was diagnosed with acute leukemia, at 38. We had just gotten engaged. After three years of COVID-19 and finally seeing the light at the end of that messed-up tunnel, life was stabilizing. We put a ring on each other’s fingers. (That’s how these gays did it.) We playfully argued over how to announce our engagement. Our paralysis is why you didn’t get a card in the mail or a post online.
Then cancer struck.
At first, it was a chronic form. I didn’t know there was a chronic form. But apparently, there is a medication that can control leukemia so it’s not blasting in your blood and killing you. Well, killing “one.” One being my fiancé. Right after Thanksgiving, that medication failed — big time — and the cancer morphed. We saw his numbers reverse. After months of a steep decline, his numbers were suddenly going up. He was petrified. He knew trouble was ahead. I didn’t. I was being positive, hopeful, and optimistic that it was an anomaly — something we would be sure to see over a lifetime of chronic disease. It’s not the first time my naïve sunniness has been crushed by reality, like one of those garbage trucks that swallows cars whole and reduces them to tin foil in seconds.
Ever the details man, he could recite his cancer numbers by heart. And he understood that this significant of a jump — in the wrong direction — was not a blip. Accountants know these things. Artists don’t. And since even modern medicine is obsessed with texting and pinging and portals, we saw the test result before the doctor. What a truly stupid way to communicate about matters of life and death — patients get all the information and have none of the expertise. And doctors are forced to deliver bad news to people who already know it. He was right. It was clear in the report. It was not a blip.
So when we went to the oncologist the next morning, we already knew. “You’re resistant to the medication,” the doctor told him. “I saw it in the labs,” he replied, like a medical student trying to impress his professor — or a man scared for his life who just wants to get on with the conversation. “It does happen,” she continued. And now it was happening to him. “We had six options for drugs. Now we have two.” My heart sank. He looked at me and grabbed my hand. The only real hope one has after a cancer diagnosis is that you have options if, of course, you’re lucky enough to have options. When those options narrow, your worst nightmares start coming into clearer focus.
Twenty minutes later, those nightmares were vivid as we fell off a steeper cliff, one none of us could see, the doctor included. The bloodwork was back — ping! — from the blood he had given at the start of that very appointment. The results were on his phone and her screen. She looked him in the eyes. “I’m so sorry,” she said. The poor woman had to process it in real time in front of us. “Everything we just discussed is moot.” Her voice lowered by the smallest fraction of an octave. “It is acute now. You’ll have to be hospitalized. Immediately. You’ll need chemo. And a bone marrow transplant.”
From that day until this one — the last four months — life has been consumed with tests, scans, needles, IVs, ports, machines, infusions and transfusions, high-octane bath wipes designed for grown men, chemo, chemo, chemo. This chemo is meant to kill the acute leukemia. This chemo is meant to kill the chronic leukemia. This chemo is meant to grind your body into the ground to build it back up literally cell by cell. He even had four days of a certain chemo that the body secretes through the skin, so he had to shower twice a day, alone, barely able to stand, connected to a monitor on wheels. I wasn’t allowed to touch him for a week.
It’s all been so extreme. All I can do is what I know has worked in life’s other dark moments: take a deep breath, forget about the past and the future — neither exist right now — and just take the next step. Put one foot in front of the other. And keep going.
Ten days ago, he had a bone marrow transplant. His sister, who lives in their hometown a world away in Montenegro, came to New York for the first time, to save her brother’s life. We had always imagined her welcome trip would be filled with joyful jaunts around the city. The High Line. Central Park. A Broadway show. Not on our imaginary tour? Eight hours in a clinic bed at NYU Hospital, each arm hooked up to a machine that harvests your stem cells. Not exactly Hamilton. Now it will take 7–16 days for his body to start producing new white blood cells. Then we’ll know it “worked.”
Smack in the middle of it all, a nearly impossible situation became utterly surreal. Between a month-long hospital stay for chemo and another month-long hospital stay for the transplant, my love came home. No tubes. No beeping rolling robots. No late-night interruptions for vitals. Or to give meds. Or to change the garbage liner. The man sat on the couch at home and watched eight seasons of Charmed as quietly as a bewitched mouse while I tried to pick up the paperwork pieces of our life at a nearby desk.
Two weeks in, sometime between calling the pharmacy for the 798th time and trying to figure out why New York State only gives you $170 a week for short-term disability, an intense pain shot through my stomach. Not his. Mine. Huh?
I rushed to the bathroom. I’ll spare you the details. But there was sweat. Sweat. And tears and vomit and screaming. I don’t handle pain well. I am what he and I call a “sensitive flower.” He could get run over by a truck, lift himself off the pavement, and calmly ask to be taken to a hospital, please. I whine for three days if I stub my toe on a cushy ottoman. “Are you okay?” he yelled from the sofa, as Shannon Doherty and Alyssa Milano vanquished this episode’s demon. “Noooooooooooooooooooooooooo!” The demon was in me.
I immediately called a friend who is a gastroenterologist. My doctor friends rue the day they became friends with a sensitive flower. I call for stupid crap you can easily google. This time was different. Dr. Friend recommended I go to the emergency room. “That seems extreme,” I said. An hour later, it all subsided anyway. No more sweating. No more nausea. My fiancé was the sick one. I wasn’t. This was a blip. This too shall pass. Keep calm, carry on, and take a Tylenol. Life is full of unpleasant moments of screaming in the bathroom, isn’t it?
I came to my senses the next day and called our actual doctor. “You’re 45 now,” she said. “You should have a colonoscopy.” So we scheduled it. It snowed the day of the procedure. I canceled. But my fiancé insisted. “You’re re-scheduling.” “But there is so much happening with you. We can look into this when things settle down. I am fine.” “No. You are getting a colonoscopy and you’re not going to argue with me about it.” When he tells me what to do I know he is feeling better. So to honor his recuperation, I re-scheduled. Appointment in the portal. A trip to CVS for the requisite Gatorade. Twenty-four hours of prep. Sixty-four ounces of Myralax. Gown. Hair net. Anesthesia. Oh, look, a hot nurse! Ane-sthe-siaaaaa…
The moment the doctor came out of the procedure and met us in post-op, we all knew. You could see it on her face. “You have a very large tumor in your colon. It’s the size of a peach. I couldn’t get the camera passed it. It will have to come out. It looks malignant.”
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What? Wait, what? Three days later, I was diagnosed with colon cancer. A week later I underwent surgery to have a foot of my colon removed. A week after that it was staged: stage three. It had spread to the lymph nodes. In all likelihood, the surgeon had gotten it all out. But because it was already in the nodes, I’ll start six months of chemo next week. In and out of the oncology clinic. A port in my chest. A fanny pack to take home more fluids. Oh my god, more phone calls, more portals, more texts, more bills, more cancer, cancer, cancer. Even my phone knows I have cancer now — and which type. I keep scrolling through ads for Cologuard.
It’s all been so extreme. All I can do is what I know has worked in life’s other dark moments: take a deep breath, forget about the past and the future — neither exist right now — and just take the next step. Put one foot in front of the other. And keep going.
That’s where we’re at. I would be lying if I didn’t say we are both thoroughly exhausted. I’ll write more another time about what this has done to our relationship (good things), our plans (bad things), what life has been like as a couple battling this nasty double whammy, and what we've learned about medicine, science, family, and God. Writing is helping. Processing it all via keyboard helps me see it, oddly, as someone else’s story. It gives me a reprieve from the heaviness.
For now, we take solace from the phone call I got this morning. I am healing from surgery at home. He is in the hospital recuperating from the transplant. My phone buzzed a little after nine.
“I have white blood cells,” he said.
“You do?”
“They registered on my bloodwork this morning. They’re there, baby. They’re there.”
“They’re there.” I held back the deluge of tears pushing against my eyelids, fearful that if the dam broke I might never stop sobbing.
“They’re there.”
“They’re there.”
This incredibly insane experience has had countless moments of horror and magic. Today was magic. And our spirits are buoyed for the fights ahead.
Julio Vincent Gambuto is an author and moviemaker. He is a weekly contributor to Medium, where his viral essay series, Prepare for the Ultimate Gaslighting, started a global conversation, reaching over 21 million readers in 98 countries. His first book, Please Unsubscribe, Thanks! is in bookstores now.