In the Fall of 2004, Mr. C and Ms. J were riding a bicycle built for two around Greece, celebrating Ms. J's return to health and strength after her multiple myeloma diagnosis in 1999 and her stem cell transplant in 2000.
Alan and I were in Greece at the same time, celebrating our 15th wedding anniversary. But we hadn't yet met Mr. C and Ms. J, and hadn't ever heard of multiple myeloma. For us, those two things wouldn't happen for another year, when in the Fall of 2005, back in Portland, Oregon, Alan was also diagnosed with multiple myeloma.
In 1999, Ms. J was diagnosed with MM after several of her vertebrae collapsed when she was moving a large vase in their home. Mr. C launched himself into the battle to save his wife, who at the time was given a 6-month prognosis. He did a lot of research, collecting 7 binders full of MM notes and data. Mr. C is a "Caregiver's Caregiver" He bought stock in Celgene, the manufacturer of Thalidomide, the latest (at the time) breakthrough drug for multiple myeloma, in hopes of getting the current information on what Celgene was developing, as one of their shareholders. When C & J determined that their best option was a stem cell transplant, Mr. C offered to buy their local hospital the equipment to harvest the stem cells. In 2000, stem cell transplants were a relatively new and experimental process in Portland.
For C & J, the transplant was victory. Ms. J is a "Poster Girl" for successful myeloma stem cell transplants: It's now been 12 years since she had hers, with no follow-up drugs or treatment since 2000.
Through a serendipitous connection, Mr. C and Ms. J became the first fellow travelers Alan and I met after Alan's diagnosis, and turned into our first guides. They invited us over to their home to share their story and answer our questions. During that evening of listening to their saga, and wealth of fascinating anecdotes, they both shared a warning with us: After the successful treatment, with so much to celebrate and be thankful for, they nearly divorced. The strain of the intensity of the medical crisis had left them in very different places. Mr. C was vehemently protective and Ms. J was withdrawn and overwhelmed by what she had been through.
All of us become terribly caught up in the battle with multiple myeloma, we fiercely support and fight for our partners as well as for ourselves. Caregivers become hyper vigilant, and it's assumed patients will always be grateful for the help and love they receive, but it isn't simple for any of us. Often we become so accustomed to our roles that we can't re-adjust when it's time to resume "normal" life. C & J were to see how behavior patterns that were so necessary in the time of distress were pulling their marriage apart when the need for struggle was over. Fortunately they recognized the problem and were able to talk to each other. They found support groups and got help from a cancer social worker from the hospital.
Many of us don't get to that safe place where the myeloma is no longer the biggest fight of our lives. We move forward to keep from falling, seeking that balance, and a way to ride tandem for the duration of the trip. We both are pulling more weight than we ever thought we could as we negotiate the road ahead together.
As Lance Armstrong said, "It's not about the bike."