Multiple Myeloma Survivor
- Diagnosed with multiple myeloma in May 2005 at age 22
- Treated with radiation therapy and chemotherapy to achieve remission
- Treated with bone marrow transplant in December 2005
Sarah Kaufmann-Fink wanted to save the world. An eager young woman from Columbus, Ohio, Sarah joined the University of Washington (UW) in 2001 to study international health and social services. “I wanted to be the next Kofi Annan [the seventh Secretary-General of the United Nations and winner of the 2001 Nobel Peace Prize],” she said, recalling her college days. After traveling to Kenya for a nonprofit organization during her junior year, Sarah started a project collecting textbooks for the children of Africa. In the fall of 2004, during her senior year, she and three of her closest friends returned to Kenya to distribute the 25,000 books they had amassed.
Living the life she had planned, Sarah’s future seemed bright. She looked forward to returning to Seattle in January 2005 and graduating that June. But in all good adventure stories, some drama arises. For Sarah, this came in the form of malaria. Just as her time in Kenya was coming to a close, she became very ill, and she was hospitalized in London for 11 days in December 2004.
Sarah made it back to Seattle in time to start school’s winter quarter in January 2005. But that spring she was tired and did not feel much better. As she studied for her final exams, she visited doctors, who checked her blood and scanned her body. She learned she was anemic, but little else showed up—until finally a doctor at Harborview Medical Center proposed a long shot. She ran another blood test, and the results that came back surprised her: Sarah had multiple myeloma.
Diagnosis: Multiple Myeloma
The diagnosis of multiple myeloma, a disease most commonly seen in adults age 60 or older, was a shock to Sarah. “We called my mother in Ohio,” Sarah said, “and she became immediately pragmatic, asking ‘What can we do now? What is the next step?’”
Sarah then came to Seattle Cancer Care Alliance (SCCA) to learn about her disease and what could be done to treat it. Her mother was coming to stay with Sarah but hadn’t arrived in Seattle yet, so Sarah brought her boyfriend and another friend to her appointment at SCCA with Leona Holmberg, MD, PhD, assistant professor of medical oncology at UW School of Medicine. Sarah wasn’t prepared for what happened next.
“We were 22 years old, and we felt like we were run over by a truck,” Sarah said, recalling the amount of information she and her companions received, the statistics for her survival, and the treatments required to put her disease into remission.
“I asked the doctor where the statistics came from, and she said not from people like me but from people much older. They had no data on patients like me. That was a low point for me,” Sarah said.
Sarah rejected her mother’s request to return to Ohio but agreed to get a second opinion at the Mayo Clinic. When doctors there echoed the sentiments of the SCCA medical oncologists, Sarah decided her best option was to have treatment in Seattle immediately to deal with the cancer and to prepare for a bone marrow transplant.
In between medical appointments, Sarah studied, took her final exams, graduated from UW, and accepted a job at an organization she had worked with on her book project, which allowed her to work from home. She held on tightly to her dream of saving the world. “I didn’t want to acknowledge that cancer would get in the way. I was stubborn,” Sarah said.
Treatment for Multiple Myeloma
Sarah moved out of shared housing with her friends and into an apartment with her mother, who took care of Sarah during her treatment: several weeks of daily radiation to her left arm, where the cancer had accumulated, and an oral chemotherapy.
“I had big plans,” Sarah said. “I wanted to lead the United Nations, to travel the world, to work for nonprofits. My world had suddenly shrunk! The world had been my world, and now I was under house arrest with a compromised immune system from the treatment.”
The main goal of treatment for multiple myeloma is to eliminate or reduce the number of myeloma cells—that is, to stop or slow down the disease. Then the effects of damaging proteins and chemicals released by the myeloma cells also improve, and the patient is healthier and feels better. Many people with myeloma live full lives for years or decades using the many treatment options and combinations of options available today. While doctors do not yet have a cure for myeloma, some patients with active disease who have treatment are able to enter remission—a period in which most or all signs and symptoms of the disease disappear.
Bone marrow transplantation, also called hematopoietic cell transplantation, tends to give the best results in terms of slowing or stopping the disease and prolonging survival in people who are good candidates. Once radiation and chemotherapy put her cancer in remission, Sarah began the road to transplant under the care of Dr. Holmberg as well as John Pagel, MD, PhD, associate professor of medical oncology, and William Bensinger, MD, professor of medicine, both from the UW School of Medicine. Treated with more chemotherapy to kill her immune system, Sarah received her bone marrow transplant on Dec. 6, 2005.
Because Sarah was extremely susceptible to infections, her mother was very careful with Sarah. “It was so frustrating. No friends were allowed to visit. I couldn’t even push the elevator button for fear of germs,” Sarah said. “I wanted to be independent, but I had no control over what was going on in my body.”
As she recovered, Sarah was never so excited to get back to her old life, to move back in with her friends when her mother returned to Ohio, and to just be a normal person again. Six months after her transplant, Robert Rostomily, MD, a professor of neurosurgery at the UW School of Medicine, performed surgery to remove a mass behind Sarah’s eye that had been found on a pre-bone marrow transplant MRI. “And that was that,” Sarah said. Her treatment was over.
Sarah didn’t lose her sense of adventure just because of cancer. She celebrated her one-year transplant anniversary—her first “birthday”—skydiving with her boyfriend. “It’s good to do things at least once,” she said.
What Mouth Sores?
Immediately after her treatments, Sarah’s goal to save the world began to take a new form. She decided to leave her nonprofit job and become a nurse. She took her nursing prerequisite classes at that time and went to nursing school at UW in the spring of 2007. She was a registered nurse by September 2008. “It’s a tangible contribution,” Sarah said. “You can see the results. And I really liked the nurses who took care of me. They were the ones who did the reassuring during my treatment.”
They also gave Sarah sage advice to get her through the rigors of induction chemotherapy before her transplant. Just before her chemotherapy was administered, her nurse advised her to suck on ice chips for the eight hours it took to administer the treatment. “You’ll hate it, but you won’t get mouth sores,” the nurse said. Sarah did it, and she never got thrush, an oral fungal infection that affects some people with weakened immune systems.
The nurse also suggested that Sarah bring in three cut oranges during her chemo treatments. “You’re not going to eat them, but smell them to ward off the nausea,” the nurse explained. It worked.
The hardest part of the entire treatment process for Sarah turned out to be not the physical part but the emotional part. “All I ever talked about was cancer. I wasn’t just cancer. My life didn’t end. I still had dreams,” Sarah said. “One nurse asked me who I was, and she made me feel normal. I felt human when we talked about topics outside of cancer.”
Everyone Can Make a Difference
Sarah’s cancer is one that will relapse, or recur. “That’s hard knowledge to have,” she said. But she keeps the disease in perspective. “It’s part of me but not all of me. I am focused on what’s important to me, and I don’t sweat the small stuff anymore. What I care about I’m passionate about.”
After Sarah’s treatment, her mother emailed all of her doctors to thank them for taking care of Sarah. But she also told them that the two-to-four years of remission they were predicting wasn’t acceptable to a parent. That’s why in 2008 she started MMORE, Multiple Myeloma Opportunities for Research & Education, a 501(c)(3) nonprofit corporation dedicated to raising awareness and funds through fun and inspiring community events. Sarah, along with her parents, are active in the organization. “I can incorporate myeloma into my life this way and have it be a positive aspect instead of a negative one,” she said.<< PREVIOUS | NEXT >>