- 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
When she was diagnosed with multiple myeloma as a 22-year-old college student, Sarah Kaufmann-Fink was told that the average life expectancy from diagnosis for myeloma patients was two to four years – It’s now been more than 11 years.
“If I was diagnosed today, they would probably tell me [a life expectancy] of six to 10 years so it’s a little terrifying to be within that window – or to be beyond that window, because you feel like, ‘OK, well is my time up?’”
While her life didn’t take the course of “saving the world” as she envisioned as a student at the University of Washington before her diagnosis, she is just as motivated as her college self. Now married with a daughter, Sarah currently lives and works as a nurse in Seattle. Her positive experiences with her nurses while in treatment at Seattle Cancer Care Alliance (SCCA) motivated her to go back to school to become a nurse. She also continues to support the multiple myeloma community through the nonprofit that she and her parents started, MMORE: Multiple Myeloma Opportunities for Research & Education.
Diagnosed during college
Sarah spent the fall of her college senior year traveling to Kenya with three of her closest friends to distribute 25,000 books to rural schools and libraries that they had collected as part of a nonprofit project. In December 2004, just as they were preparing to return to Seattle, Sarah fell ill and was hospitalized in London for 11 days with malaria and severe dehydration.
After returning to Seattle to begin winter quarter at the UW in January 2005, Sarah still did not feel like her normal self.
“I was still very anemic so I was being seen by the Hematology Division at Harborview Medical Center,” Sarah said. “They thought maybe I still had malaria. Or, maybe it was mono because I was in college.”
Throughout that winter and into spring, doctors ran many tests to determine why Sarah still remained anemic. In May 2005 they tested her for something they hadn’t checked before and that’s when Sarah received her multiple myeloma diagnosis.
The diagnosis of multiple myeloma, a disease most commonly seen in adults over the age of 65, came as a shock.
Receiving a bone marrow transplant and celebrating a “first” birthday again
Sarah was seen by Leona Holmberg, MD, PhD, for her first appointment at SCCA. Originally from Ohio, her parents weren’t able to fly out for the appointment so she was accompanied by her boyfriend and another friend.
“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.
Although her parents wanted Sarah to return to Ohio for treatment, Sarah decided she would receive treatment and prepare for a bone marrow transplant at SCCA.
Sarah moved out of the apartment she shared with 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 a hole in the bone had formed from the cancer, and oral chemotherapy and steroids.
Once radiation and chemotherapy put her cancer in remission, Sarah began the road to transplant under the care of Dr. Holmberg and two other medical oncologists. 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, she had to be very careful. “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.”
Six months after her transplant, she received a surgery to remove an unrelated mass behind Sarah’s eye that had been found incidentally 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 with her cancer diagnosis. She celebrated her one-year transplant anniversary — her first “birthday” — skydiving with her boyfriend. Sarah continued to celebrate that anniversary by challenging herself to do something new for the next four years including completing a half marathon, 100-mile bike ride, sprint triathlon and the 200-mile Seattle to Portland bike ride.
“It’s all about reclaiming control of my body. I was that strong person again,” she said.
Life after treatment
Sarah was on chronic steroids for eight months during treatment, which caused her to gain weight. She also lost muscle mass and became very weak. But, the emotional side effects were much more devastating to Sarah than the physical ones.
Because of her young age, Sarah didn’t feel like she could connect with anyone related to her disease.
“I wasn’t able to find a young person support group that wasn’t for breast cancer,” she said. “I didn’t join any support groups initially because I was in denial that this would be a lifelong part of my life.”
Sarah is now part of MM Fighters, a local multiple myeloma support group and currently follows up with her physician at SCCA every six months for a check-up. She remains physically active although much of her time is spent chasing after her toddler. Sarah continues to advocate for multiple myeloma patients and fundraises to keep pushing research forward. Sarah enjoys connecting with others and encourages other multiple myeloma patients or young cancer patients to reach out to her at sarah@mmore.org.
