"It's a journey I would have never chosen."
For most of us, that is true. It's true for me. It's true even though, frankly, some of the gifts from being on this path have been huge. I wanted to write a bit about some people I have met in my six-plus-year odyssey as a myeloma caregiver wife, who DID choose this journey.
My husband, Alan, was diagnosed in September 2005. I jumped on the research and searched for resources quickly. The IMF was one of those resources. I remember ordering the large bag of pamphlets about multiple myeloma, and the arrival of the card for a Patient and Family Seminar in San Francisco. That seminar happened to hit on the day of my 50th birthday. We traveled from Portland to San Francisco, and were like sponges absorbing information. I remember the rush of calm when a patient panel included a 28-year survivor.
At a cocktail party that evening my extremely introverted husband whispered to me "Don't make eye contact!" He was shy in a room full of strangers. But Alan married an extreme extrovert, so of course I made eye contact, and invited a couple looking for a place to sit to join us.
It was Ms. J and Mr. J from Medford. They were delightful. Alan was immediately fascinated with Mr. J's extensive notebook of years of lab results. They both "engineer" types, and Alan started keeping similar spreadsheets of his lab results when we returned to Portland.
I've held onto this couple's story for years. They were several years older than us and had been dating for a long time before Ms. J said "yes" to a marriage proposal. The wedding was just weeks away when the myeloma diagnosis came. There was a lot of pressure from her family to call it off and to avoid a marriage as a caregiver to a myeloma patient. But she didn't back out.
How hard it must have been to choose to say "yes," not knowing what the future might be, and with well-meaning family trying to dissuade you. By the time Alan and I met them, things had developed into a pretty nice routine of golf and clinic appointments, and the marriage was a treasure to both.
We threw ourselves into our local myeloma community. Because of this, when friends of friends had a family member who had been diagnosed with myeloma, we often found ourselves connected with them to "show them the ropes." This was how I met Ms. C, who was gathering information after her fiancÃ© was diagnosed with myeloma. She was in her 40s and finishing a medical program, and he was approaching 50. She wanted to talk to someone about what it was like to marry someone with a myeloma diagnosis. I shared what I could about choices and obstacles.
Ms. C also chose to be the wife of a myeloma patient. In the brief window before her new husband began Revlimid treatment, she became pregnant. The couple's little son has the widest smile I have ever seen on any human being, and is the center of their universe.
Two weeks ago, I was at the IMF's patient and family seminar in Seattle, and met Ms. S, whose boyfriend of almost five years was recently diagnosed. She is selling her house, and he is packing up his, to move to the East Coast together, where they have decided his treatment will be handled. Her sweetheart asked Ms. S not to share his diagnosis with friends and family, partially, I think, out of worry over the judgments they might make on her choosing to accompany him on his challenging future. But she is smart, loves him, and is choosing with her eyes open.
I hope all three of these caregivers find gifts along the way that exceed the challenge of choosing to accompany someone with myeloma on this uncertain path. If your story is similar, you, too, have my extra admiration.