‘Community of Warriors’: Transplant Mentors Offer Hope, Encouragement to Patients
July 27, 2017 | by Steven Dolainski
Esquerra was diagnosed with acute myeloid leukemia in 2009, a disease that can progress quickly – and can become fatal in a short time. Shortly thereafter, Esquerra underwent an allogenic (donor) stem cell transplant at City of Hope.
Then, during a routine blood test, Esquerra learned that her doctor was a 10-year transplant survivor.
“Finding this out made a big difference to me,” said Esquerra. “Sometimes all you need is to see someone who’s been through it. It gives you a little nudge, a little encouragement. Here was a survivor, and there were no visible signs of cancer.”
Department of Supportive Care Medicine.
Giving back is a strong motivator for these four volunteers.
I knew once I was in remission and fighting my way back to my new normal, I wanted to give back and show others what the face of multiple myeloma looks like and that there is hope,” said McNutt. “I truly feel blessed to talk with patients who are beginning their journey, to give them hope and to be a part of my new community of warriors.”
Stephen and his wife play a unique role among this “community of warriors.” They are the first patient-caregiver couple to be trained as mentors. Stephen had an autologous transplant for multiple myeloma as an out-patient in 2015. He and his wife regularly interact with other patient-caregiver couples, and he serves on City of Hope’s Patient Family Advisory Council.
Stephen has a philosophical outlook about his cancer journey: “As a patient, I just had to get through the experience. I had to get on the train and go.”
As a caregiver, Joyce had a more practical outlook: “I had to be strong.”
Just as Esquerra, McNutt and Stephen understand what a patient is going through, Joyce knows the fears and uncertainties that a caregiver deals with. She recalled, “When I gave Steve his first shot, he screamed.” She and Stephen both laugh about that now, but admit that it didn’t seem funny at the time.
Stephen endured dramatic weight loss as a result of the transplant and often did not have much of an appetite. So Joyce now offers tips to other caregivers about foods “to load up on calories,” such as fruit smoothies with ice cream or half-and-half, chicken or vegetable soup with potato, or Carnation Instant Breakfast drink with whole milk or peanut butter.
“Whatever she gave me, she was trying to keep the calorie count high because I didn't really want to eat and was losing weight,” said Stephen.
Now, with training and some experience under her belt, Joyce joked: “If I can do this, anybody can do this.”
Mentoring, of course, is no laughing matter. Transplant patients have many questions that are hard to answer. A patient once asked Esquerra, “How long does it take to get out this foxhole?” Another asked her what the worst thing was she had gone through as a transplant patient.
“That was the first time anyone had asked me that question,” Esquerra said. “She just wanted to know that it’s not as bad as she thinks. We connect in our pain.”
A transplant is a life-changing experience. For Esquerra, the change came with an ironic twist. Esquerra was a financial planner, helping people plan for retirement or sending children to college. While she was in the hospital, she thought, “I might not reach retirement age.” She didn’t know if she would "survive another week or another month. There are no guarantees.”
That realization changed her worldview.
“So, what’s worth spending my time on? What will really be meaningful? I can help people now, when they need it most, not for when they retire. That’s why I volunteer.”
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