When Jim was diagnosed with last stage multiple myeloma in 1992, he was told by a leading cancer center that he would live a few months, or two to three years if he elected treatment and, if all goes well. That was 29 years ago.
They had celebrated 21 anniversaries when he was diagnosed. Since then, they have seen their two sons marry and have children. Jim did not think these were possible when he was diagnosed, but excellent medical care, determination, and good fortune helped enable it.
They have shared their story in person and virtually 75 times with blood cancer groups and over 250 times with other groups in 37 US states, the National Academy of Science in Washington DC, Spain, Japan, and myeloma groups in Canada and New Zealand where its archived. They welcome more opportunities.
There is much more to their story than time allows at these gatherings. During Jim’s stay-at-home time due to Covid 19, he wrote a book, which his wife and daughter-in-law, Stacey reviewed. Stacey suggested the title, and The Man in the Arena: Surviving Multiple Myeloma Since 1992 was published in 2021. Jim will donate profit from the book to the IMF, American Cancer Society, University Hospitals of Cleveland ,the Bone Marrow Registry, Dana Farber Cancer Center, Mayo Clinic, and the Leukemia & Lymphoma Society–each of which are critical to their ongoing story.
The book explains their approaches to dealing with myeloma as a patient and caregiver and a couple acronyms are included that summarize their approaches. Among these are: daily exercise, including days hospitalized doing one of four stem cell transplants. The phrase, Sit, Stand, Walk describes what he pushed himself to do in the hospital. His sister-in-law says On Your Feet, Not Your Seat .
Partnering with their doctors and nurses, at times obtaining second opinions, seeking clinical trials, and his family’s approach to dealing with Jim’s high steroid days are among their strategies described.
They developed an 8 PM Rule which people tell them works in other challenging situations. Stopping cancer discussions a few hours before bedtime, helps them sleep better. Kathleen adds that it originally was a 9 PM Rule, but they’re older now, and If it gets to be a 7 PM Rule, she’s not telling anyone.
A sense of humor helps. After Jim’s sister, Becki, donated her stem cells for a transplant, Kathleen said Jim was more fun to shop with. After a woman living in Germany donated cells, Jim claims to have an urge to attend Octoberfest.
Some say they’re lucky, and they agree. But, he adds that a famous college golf instructor told his golfers when facing an impossibly long putt, the key to making the putt is hitting the ball hard enough to get it to the hole, and thereby give luck a chance to happen. This is what they continue to do.
By staying current on treatment developments Jim believes other patients are also are giving luck a chance to happen.
You can contact Jim at firstname.lastname@example.org. Searching his name and myeloma gives some of their story in print and video format.