I was a 49 year-old father of five adolescent kids with a demanding job and a time-consuming commute when I was diagnosed with MM in 2003. That news, delivered clumsily by my hematologist, left me shell-shocked in his waiting room for over an hour. Nothing gets your attention like a mid-life reminder of your mortality.
Because I was then symptom-free, two years passed before I began active treatment for MM following the onset of painful bone fractures. Revlimid was then available only in clinical trials but I was able to enroll in one through New York Hospital. After six cycles on the BiRD protocol (Biaxin, Revlimid, Dexamethasone), I achieved a Complete Remission (CR).
Those six months in initial treatment were the hardest time in my life; bone pain made working and commuting a challenge, and Dex took a huge toll on my sleep and emotional well-being. So when I achieved a CR, I decided to collect stem cells but wait a while before having a transplant. Twelve years later, I’m still waiting.
Revlimid has been the key to my long, progression-free survival. I have taken a 15 mg “maintenance” dose continuously, along with an array of medications and supplements to manage side effects, especially clotting risk. That regimen has allowed me to continue a very active life including international travel for work and strenuous, daily physical exercise.
I’m extremely grateful that this drug therapy has, for me, fulfilled the promise of making MM a chronic, treatable condition. The credit for that belongs to my wonderful medical team, caregivers (most especially my wife), family and friends, a supportive employer, and most of all, the dumb luck of being an excellent responder to Revlimid.
But taking hold of life with MM is something all of us can do as patients. For me, these have been the keys:
Accept help with gratitude. Illness challenges us to acknowledge that we need others to get through tough times. If you‘re lucky enough to have people in your life who want to show their love by helping, let them.
Expect a future. An MM diagnosis seems to take your future away. Trust that you will get it back. The kids I hoped to see graduate from high school have now all finished college and started their careers. I outlived my parents and am now making my own retirement plans. While there’s never a day to waste, be optimistic that you’ll have lots more of them.
Take some risks. Fear of “what might happen” can deprive you of the great gift of life’s adventures. Sure, something can always go wrong. But with a safety stash of emergency meds as insurance, I’ve rafted the Grand Canyon, hiked in the Alps, and kayaked in Mexico. I’m not done yet. Neither are you.
Don’t worry before you need to. Cancer journeys are full of constant uncertainty. We are forever awaiting appointments and test results, and puzzling over “what if.” Stop it. Until you have real information requiring action or decision, think about something else. Don’t spoil the good days worrying about the bad ones.
Care for all of you. I believe that the time I spend nourishing my spirit – through prayer, meditation, service and friendship – strengthens me for my journey with MM. I know that it deepens the joy I find in life.
Good luck on your journey. Stay strong.