Photo courtesy of Aimee Swartz
My partner Jackie was 36 years old and a tour manager for some of the coolest rock ’n’ roll bands when she learned she had multiple myeloma, a blood cancer that develops in the bone marrow. She was determined to get back on the road as soon as treatment was over, but cancer had other plans.
Like many multiple myeloma patients, Jackie has had few treatment-free periods since she was diagnosed 13 years ago. She will probably always be on some form of maintenance therapy. Most of her treatments leave her exhausted and depleted, and for the most part, she has been unable to work. Even activities she normally enjoys can be difficult on bad days, which are impossible to predict.
“There is no way to know if I’ll be able to go,” Jackie reminds me when I schedule anything more than a few days ahead. “Will I even live to see this?” she has asked on many occasions. At times, we both find ourselves thinking we are tempting fate by planning an activity six months out.
But we plan anyway—big things, like our wedding last summer and a dream vacation, and small things, like my niece’s soccer game and a friend’s barbecue. Living with cancer means not only confronting mortality, but also deciding how we want to spend the rest of our lives together. Planning gives us both a purpose and something to look forward to. And though each patient’s journey has its own challenges, it’s important that life not be measured solely by treatments and doctor’s appointments.
Be sure to keep a calendar with upcoming commitments, including medical appointments and treatments, so you can schedule enjoyable activities when your loved one is feeling OK. Don’t overlook having restful, quiet time as well to help restore mental and physical health. Time spent watching a favorite movie or binge-watching a television series you both like can be as enjoyable as a big event—and is just as important to help loved ones maintain their health.
It’s OK to accept an invitation to a party though you suspect you may have to adjust or even cancel your plans at the last minute. Yes, you may be forced to give up a night out for a night at home, or to substitute a trip to Europe with a weekend at a local resort. Still, allow yourself and your loved one to dream about your future together. You may be able to do the things you want or you may not, but you definitely won’t experience them if you don’t at least try to make them happen.
January 03, 2018