Cancer, a love story

Jackie and I fell hard, despite her illness. But how could I love someone while anticipating the loss of her?


Aimee Swartz
October 16, 2014 3:00AM (UTC)

A few weeks back, my girlfriend Jackie and I threw a party in an East Village bar to celebrate her 10-year cancerversary. We got our hair blown out and our nails done. We wore festive dresses and sparkly shoes that hurt our feet. We drank frothy cocktails made with spices and herbs with friends who either believed Jackie was dying or cured; uncertain, they raised a glass.

The kind of cancer Jackie has, a jumble of syllables known as multiple myeloma, is confusing like that. It’s not one of those so-called “good cancers” you battle valiantly for a year and then beat. It’s not an immediate death sentence either, but it is, in fact, a death sentence. A kind of “long-term terminal,” as Jackie calls it. Few survive beyond five years, which makes Jackie’s decade-long run all the more remarkable.

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By the end, it was just the two of us, swigging the last of the Champagne straight from the bottle. Jackie looked stunning, with her jet-black hair and glorious bone structure. But what struck me was her exuberance, a girlish lightness in her I had rarely seen. In the three years we had been together, pain had taken command of her body and fatigue almost never loosened its grip. In recent months, we spent a lot of our time together in bed, holding hands and watching "Law & Order" marathons.

The night of the party was different. We shut the bar down, and went for a slice of pizza. “I really feel like my old self tonight,” she said, though she hit a wall soon after. We hailed a cab back to our apartment, and slid inside. As we made our way uptown, I chattered away as she sat silently, her head resting against the window so that the city lights caught every angle of her profile.

“A lot of people believe cancer is some sort of gift,” she said, interrupting me. “I am never going to get to that point.” Then, she wept.

Before she got cancer, Jackie was one of the hardest working women in rock ‘n roll. She brought little Frances Bean Cobain home while mom and dad bided their time in rehab. She hosted her own show on MTV called Super Rock and walked the VMA red carpet with the kids from My So Called Life. She managed, travelled the world with, and became a close confidant of legends like the late and great Elliott Smith.

Jackie was in the middle of a tour with the New Zealand band the Datsuns when she sneezed and her rib snapped—the third fracture in just as many months. She was also unusually tired and had gnawing back pain. She blamed it all on the hustle and grind of the job, but made a trip to the ER on a pitstop in New York just in case.

Her blood work suggested something was wrong, though none of the doctors suspected cancer—and certainly not multiple myeloma. The typical multiple myeloma patient is an African American man in his 70s; Jackie was a white woman in her mid-30s.

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But results from a bone marrow biopsy three days later confirmed Jackie did, in fact, have multiple myeloma, her CT scan revealing that her skeleton resembled Swiss cheese—a result of loads of myeloma cells (hence the name) eating through the bone. Her cancer was raging.

She started chemo right away and had a stem-cell transplant a few months later, neither of which kept the disease in check for long. She was never well enough to go on tour again, though she has had brief periods of remission in which cancer didn’t totally rule her life.

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I met Jackie during one of them. I had seen her in Crazy, Sexy, Cancer, a documentary about young women fighting cancer. While the other women seemed to embrace their cancer as blessings, Jackie refused to accept her prognosis and wore a Fuck Cancer hat in defiance.

We became Facebook friends after I bought one of the hats made popular by the film. Then, we became friends in real life when we made plans to go to the Berkshires for a yoga retreat, united in our mission to smuggle in coffee and sweets and other contraband.

One night after dinner we took a long, slow walk around the grounds. Though daylight was fading and mosquitoes were out in full force, neither of us made a move to go in. Instead we settled under a massive camperdown elm and talked about everything—girlfriends (mine) and boyfriends (hers) who had crushed our souls, the places we had travelled and those we still wanted to see—until the late summer chill drove us indoors.

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I knew right away that Jackie was different than my other friends, who were obsessed with their careers and consumed by mommyhood. Cancer had forced Jackie to ditch any ideations of what life would or should look like. She had struggled to make peace with her mortality at a time she should have been socking away money for her retirement.

After the retreat, I started staying with Jackie when I traveled from my home in D.C. to New York to meet with clients. Then, I starting going to New York just to visit Jackie to tag along from her apartment in Bushwick to the cancer center at Mt. Sinai.

It was startling at first to see her with an IV in her arm, kicking back in a cushy treatment chair as she told me stories from her girlhood, but I rolled with it. We played Boggle without keeping score to pass the time and afterward had dinner at a dimly lit Ethiopian restaurant. It felt a bit like a date, which felt wrong.

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“What’s up with you and that girl?” my friend, Lilian, asked, after I returned to DC. It was not the first time she had asked.

“Nothing,” I said.

Then, tentatively, I began to talk about a recent, unexpected development on my visit: a flirtatious vibe that left me thinking about Jackie’s coy grin and how she smelled of tuberose.

“Doesn’t seem like nothing,” Lilian said, grinning.

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“Well, first of all she has cancer,” I said.

“And?” Lilian asked.

“And she’s not even a lesbian,” I protested.

“Oh, Aim. That means nothing these days,” Lilian said.

When it comes to love, Lilian is of the YOLO—you only live once—philosophy. She’s also prone to saying things like “Life is Short,” which, in the case of Jackie, seemed for once not a cliché but a true fact.

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Other friends took a less romantic tack: “This is not going to end well,” one cautioned. “You are in over your head,” another one warned.

But I didn’t see it that way. I told myself that despite the chemistry, Jackie wasn’t anything more than a new friend. Besides, with the exception of a few short-lived trysts, Jackie had taken herself off the market long ago.

“It’s just not fair to expect someone to love me with cancer,” Jackie had said, recalling her last fling.

Jackie’s cancer had scared too many people away, like her former best friend who didn’t visit during Jackie’s stem cell transplant, then stopped showing up all together because she “couldn’t deal.” After that, Jackie had stopped putting herself out there with anyone new for fear others would bounce when things got heavy.

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“That’s bullshit,” I said, but I didn’t try to convince her otherwise. I was newly single after a five-year relationship and was steering clear of anything vaguely resembling romance.

So there we were, content to settle for another G-rated slumber party, our knees barely touching as we lay facing each other. Until, one night, we kissed. It didn’t seem real, that’s how perfect it felt. Afterward, we lay there in our post-kiss bliss, silent and smiling, as the city buzzed and hummed in the distance.

“I guess I am heteroflexible now,” Jackie said before drifting off.

There would be no sleep for me that night. As I lay there listening to the easy rhythm of her breath and the unevenness of my own, I finally understood what was so obvious to my friends: I had already fallen for Jackie.

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Almost immediately a heart-bursting panic set in. How could I love someone while constantly anticipating the loss of her?

It might have been easier had I not understood what I was getting into. For years I had freelanced for a research foundation that played a big role in developing the very drugs that were keeping Jackie alive. I knew she had crushed the odds so far, but I also knew even the best treatments don’t work forever. The chances of Jackie beating the disease altogether were zero.

I had never confronted real illness in someone I had such strong feelings for, and I was terrified. My fear wasn’t that I couldn’t be there for her emotionally, or care for her as her health declined. I knew that I could, and I already had—schlepping her to the cancer center, doling out her meds, staying sensible when thoughts of mortality plunged her into despair. It was that one day she would go to Tahiti, as we still say, and never come back.

The next morning, there was none of the clumsiness that so often follows the crossing of a line. Instead, it felt like we had always woken up wrapped around each other, her dog Flo the only space between us.

“Cancer is usually the first thing I think of,” said Jackie, rubbing the sleep out of her eye. “Today, it was you.”

As scared as I had been the night before, it was nothing compared to what I felt in that moment. Afterward, we continued on in much the same way as we had before — spending as much of our time together as we could. I could work from anywhere and most of the time I chose to do that from Jackie’s apartment. Without even acknowledging how crazy this was to some people, we began building a new relationship in cancer’s shadow.

“I’m so scared that you’ll wake up one day and want to be with someone healthy,” Jackie said. She had a bad case of bronchitis, an especially dangerous infection for myeloma patients, and it was my first time in charge of her recovery.

“That’s your fever talking,” I said, as I obsessively tracked her temperature’s meteoric rise and eventual fall. The truth is, the thought of not being there when she was sick is what prompted us to move in together a year later.

Our life is not unlike that of any new couple. We’ve merged our friends, our music and our dogs. We go out to matinees and pancake dinners. We plant bulbs in the fall and wait for them to poke through in the spring. We have our issues, of course—money, chores, CNN vs. Bravo—but we don’t get bogged down in them; if there’s one good thing about cancer, it’s the realization that none of that stuff really matters.

But cancer does present a strain. I am often overwhelmed by taking on Jackie’s share of the many practical things cancer keeps her from doing herself. When she sleeps all day—as she often does now, sometimes for days on end—I am overcome with unbearable loneliness. Is this what it will be like without her, I have wondered, as I slinked into bed with her, laying my head next to hers.

It’s nights like these I find myself gripped by the same gnawing fear that kept me awake the night of the kiss. But in the three years we have been together, I’ve learned to live with the fear, just as Jackie had.

“How can you possibly prepare yourself for a such a loss?” my friend Lilian asked me recently.

“I can’t. When the time comes, I’ll have no choice but to go through it,” I said.

For us, there is no light at the end of the tunnel—just more tunnel and then a different kind of light. We don’t get to daydream about growing old together, watching the sunset from the deck of our (imagined) upstate lake house. We don’t have a five-year plan. We can’t even be sure if we will see the next season of Homeland.

“Do you think I could get a hold of the script if I wasn’t going to make it?” Jackie asked.

“You’ll be here,” I said. Then added, “But we’d find a way."

We didn’t know it the night of the cancerversary party, but Jackie’s latest round of treatments had stopped working. She was already in the early stages of her fifth relapse. Her doctor held a print-out of her blood work and pointed to a number that was supposed to go up and not down as Jackie gave him a withering stare.

We spoke very little on the way home. The music was up, the windows were down. The sun was just about to disappear behind the pines. It was the last beautiful day we would see that fall. “What if this is the beginning of the end,” Jackie asked, the hot tears coming.

That night, I made Jackie’s favorite meal—french toast—for dinner. Then we sipped whisky outside while the dogs squeezed in one last run by the light of the moon. “Let’s make this a tradition, even if this is the only time we ever do it,” Jackie said. And we did.


Aimee Swartz

Aimee Swartz is a writer based in Washington, D.C. She has written for The Atlantic, The Washington Post, Slate, and O Magazine, among others.

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Cancer Coupling Lgbt Life Stories Love And Sex Multiple Myeloma

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