Gratitude, guilt and surviving cancer

Hutch News

Gratitude, guilt and surviving cancer

Living through cancer is life-changing — often in unimagined and challenging ways, says leukemia survivor Jessie Quinn

Jan. 26, 2015
Jessie Quinn shown dancing at a friend's wedding with her daughter and husband

A cancer diagnosis is a ticket to an emotional rollercoaster that doesn’t end when doctors pronounce a cure. Leukemia survivor Jessie Quinn, shown dancing at a friend’s wedding with her daughter and husband, carries a deep sadness even after her strength and zest for life has returned. “I think about all the people who went through this, to get us where we are now. It’s an overwhelming thought to me.”

Photo courtesy of Jessie Quinn

There’s a cancer narrative you see a lot. A noble individual is struck by the terrible disease, with which they do battle. After righteous struggle, the fighter emerges victorious and reclaims their former life. Now gifted with the wisdom of the saints, they remain above the petty daily struggles that mire mere mortals.

It’s an appealing story. It gives meaning to a dark chapter in anyone’s life. But it’s a little hard to live up to, said Jessie Quinn, a four-year survivor of acute myeloid leukemia. “There’s an expectation that you’ll be a beacon of hope, a Buddha of wisdom. I felt none of that,” she said.

Staring your own mortality in the face, it turns out, doesn’t also confer a peek into some grand universal plan. Surviving cancer also does not bring a magical immunity to the burden of non-life-threatening daily struggles. Survival instead often brings unanticipated challenges.

Quinn was just 35 when she was diagnosed with AML. Happily married, engaged in an active outdoor career as a wildlife biologist in California and just getting her parental sea legs as the mother of an 18-month-old daughter, she saw her life unfolding along a happy, rewarding — and healthy — path. But cancer sent her life spinning down unexpected and uncharted byways.

Recurring burst vessels in her eyes eluded diagnosis, but when Quinn landed in the emergency room due to crippling rectal pain, the doctors diagnosed her swiftly and sent her directly to the cancer ward. Quinn’s only experience with leukemia came from childhood, when children in her hometown always died after diagnosis.

“It came as a kind of terminal diagnosis,” she explained. “I thought conclusively I wouldn’t live to see my daughter grow up.”

Though treatments had come a long way in the intervening years, their efficacy would mostly elude Quinn, who had a type of AML that was unresponsive to current chemotherapies. Her doctors told her that bone marrow transplantation, in which her cancer-riddled marrow and blood cells would be replaced by a donor’s healthy cells, was her only chance of survival, let alone a cure.

As it turns out, Quinn already knew a bit about bone marrow transplantation, having been recruited to join the bone marrow transplant registry while walking across her college campus almost 15 years previous. But when her doctors searched the registry for potential matches, only one name came up: her own.

‘I didn’t know if it was funny or totally tragic’

Bone marrow transplantation is only a good option if a patient can find a donor whose genetics match theirs pretty well. This cuts the risk of damaging side effects like graft-vs.-host disease, or GVHD, in which donor immune cells attack healthy recipient tissues. Quinn is racially mixed, and no one else with a suitable genetic background had registered.

“I didn’t know if it was funny or totally tragic,” she recalled.

Quinn, relying on her scientific training to lend her objectivity, combed the scientific literature for other options, even experimental ones. She stumbled on umbilical cord blood transplantation, which offers a transplant alternative for leukemia patients who can’t find an adult donor. 

Dr. Colleen Delaney

Dr. Colleen Delaney, head of the Cord Blood Transplant Program at Fred Hutch, has developed an off-the-shelf cord blood product that helps transplant patients such as Jessie Quinn engraft better and reduce their risk of infection post-transplant.

Fred Hutch file photo

Cord blood carries the same critical blood- and immune-system-forming stem cells as bone marrow, but the stem cells from cord blood are less likely to attack healthy recipient tissues. This is because the immune cells in cord blood are of a more easy-going temperament, explains Fred Hutch’s Dr. Colleen Delaney, who researches methods to make cord blood transplantation a better option for patients in need.

Cord blood immune cells are more akin to boxers-in-training with “only little boxing gloves on” compared to the fighting-fit immune cells from adult donors already equipped to deliver knockout punches, she said. This both lowers the risk of GVHD and means that cord blood doesn’t need to be as stringently matched as adult bone marrow donations.

But cord blood has one important drawback: a low number of blood stem cells needed to repopulate patients’ immune and blood systems. Delaney, head of the Cord Blood Transplant Program at the Hutch, has pioneered a method to dramatically multiply these key cells and develop an off-the-shelf supplementary cord blood product that helps such transplants engraft better and prevent infections in patients after transplantation.

Months ticked by as Quinn’s doctors searched for an adult donor while she and her husband balanced her draining chemotherapy with parenthood.

“Having a daughter who was so young during my treatment, when I was limited in my capacity to be a mom — that was crushing for me,” she remembered. “I couldn’t do for her all that I’d planned.”

When it became clear that a cord blood transplant was her best treatment option, Quinn, who’d already encountered Delaney’s work during her own investigations, traveled to Seattle. She met with Delaney to learn more about her cutting-edge research and agreed to be the first patient to enroll in a clinical trial testing Delaney’s supplementary product in patients whose cord blood donations were not genetically well-matched.

Quinn’s transplant was a success. She didn’t suffer infection afterward and never returned to the hospital after her donor cells took root and her new blood system started to bloom. She did deal with GVHD, she notes — but said it was fairly minor.  However, while her GVHD wasn’t crippling or life-threatening, it was exacerbated by sunshine. Exposure to sunlight produced “huge purple rashes on my face, little bumps and itching all over,” she recalled.  Though neither life-threatening nor debilitatingly painful, her GVHD transformed the simple act of walking outdoors into a production that required special clothing, proper timing, handfuls of sunscreen and forethought.

“It’s easy to be hard on myself and feel that I don’t appreciate enough that I came through it,” she explained. Yet though her life was ensured, the simple pleasure of being outdoors had been transformed into an anxious race to stay ahead of the sun’s now-bitter rays.

The mental struggles were most difficult

Recovery after her transplant was slow and tiring. It was the mental struggles, readjusting her expectations for what she could accomplish, what kind of mother she’d be, that were the most difficult to deal with, Quinn said.

“I went through this right when my daughter was really turning into a person,” said Quinn, whose exhaustion prevented her from taking on a primary parental role. “She really bonded with her dad, who was her primary caretaker ... It took time for me to accept that I would have a different kind of relationship with her than I’d thought.”

Now, strong again and busy parenting her inquisitive 6-year-old, Quinn values their relationship. It’s still different than what she’d imagined as the mother of a toddler.

“She’s still really close to her dad, like most kids are with their mom, but it opens us up to have a different kind of relationship,” she explains. “She likes to learn about the things I do. I taught her to knit and I take her bird watching. I share the books I loved at her age. It reminds me of the relationship I had with my grandfather, who was my hugest role model.”

Recalibrating her parenting expectations has brought Quinn up against a life philosophy from her past as a yoga practitioner and instructor: There is no good or bad change, just opportunity. “I taught that for years, but I didn’t really understand it. It’s a difficult philosophy to have faith in.”

In the past year, Quinn has regained much of her physical strength and seen GVHD wither into a minor annoyance. Daily sunscreen is a habit and anyway an itchy purple face is a thing of the past. She spent a family vacation in Costa Rica without a flare up and is finally working outdoors again on a grassland project that required long days under the sun. “It was huge to know I could do that again. I don’t feel limited anymore,” she said.

As her strength returns, emotional recovery is taking precedence. One therapist noted that Quinn, who returned to her company as an ecologist instead of a field biologist just three months after returning from Seattle, never really took the time to mourn.

“She’s right,” she said. “And to be really honest, it’s still really up and down.  Sometimes something will trigger a deep sadness for the year or two that I lost. There are people I kept in touch with going through the transplant who didn’t make it. It’s easy to be hard on myself that I did make it, that I don’t appreciate it enough.”

Survivorship for Quinn is, at times, an unwieldy mixture of guilt and gratitude. She recalls the close friends who’ve lost family members to leukemia, some in the years before new treatments made cure possible. “I think about all the people who went through this, to get us where we are now. It’s an overwhelming thought to me,” she admitted.

Quinn’s struggles, too, are making a difference. The trial she participated in showed that Delaney’s off-the-shelf cord blood supplement helps prevent infection and dramatically reduces acute GVHD and transplant-related mortality after transplantation. Delaney and her team have opened up a larger trial of the product, another step toward moving it into the clinic.

Yet Quinn remains haunted by patients she connected with who didn’t survive. “As I get better, I hope I can integrate the memory of their sacrifice into how I live and see what I do as more meaningful,” she said.

Dr. Sabrina Richards, a staff writer at Fred Hutchinson Cancer Research Center, has written about scientific research and the environment for The Scientist and OnEarth Magazine. She has a Ph.D. in immunology from the University of Washington, an M.A. in journalism and an advanced certificate from the Science, Health and Environmental Reporting Program at New York University. Reach her at srichar2@fredhutch.org.

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