In August of 2012, I was diagnosed with Waldenström macroglobulinemia (WM), a rare lymphoma with only about 1,500 new cases each year. One week after my diagnosis, on my 30th wedding anniversary, I started chemotherapy which lasted for 18 months and consisted of more than 50 infusions. My symptoms were extensive: fatigue, extreme night sweats as if jumping into a swimming pool three times a night, ten percent body weight loss, enlarged lymph nodes, daily nose bleeds, blurry vision, neuropathy, and severe leg cramps. For the first year as a WM patient, I woke up every morning horrified that I had cancer. I wasn’t ready to leave my husband Tony, and my four-pound toy poodle Maia, behind.
Thankfully, my hematologist/oncologist in Northern Virginia/DC, knew how to respond. He immediately prescribed what was then, a “flagship” treatment program for Waldenström macroglobulinemia. After several months, he was pleased with “a dramatic drop in my [immunoglobin M] IgM.”
Over time, the tremendous outpouring of compassion and kindness from all of those around me became the “gift” of cancer which sustained me with much gratitude. Tony, though frightened himself, was my “rock” and stood by me every step of the way, every day. His courage was remarkable and he always had hope. My brother Mike, a 14-year cancer survivor, called me before and after literally all 50 of my chemotherapy infusions as he understood too well how challenging treatment can be. Also, a dear friend, Jeanne, accompanied me to 46 of my treatments where we ate lunch together and watched movies on her iPad. Another life-long friend, Kathy, flew from California to Virginia to offer first-hand support.
“The tremendous outpouring of compassion and kindness from all of those around me became the ‘gift’ of cancer which sustained me with much gratitude.”
In January 2013, I was referred to one of the world’s leading doctors in Waldenström treatment and research, Dr. Steve Treon. When my husband and I arrived at his clinic in March, we were impressed with the stream-lined, state-of-the-art patient systems and facilities. My new doctor spent over an hour with us. When I told him I was afraid because my bone marrow biopsy showed 70 percent involvement, he said, “We are not intimidated by 105 percent! Patients can live with cancer just as they can with diabetes”; this was music to our ears! As our consultation continued, he addressed my entire being, not just WM. He diagnosed tingling in my thigh as sciatica, not neuropathy, and insisted on an MRI. My local orthopedic surgeon concurred, and after physical therapy, I was fine.
It was determined that I am a familial Waldenström patient as my brother had stage three non-Hodgkin lymphoma (NHL) years earlier and my uncle had chronic lymphocytic leukemia (CLL). A complete family history of cancer was requested. When I replied to him by email on Easter Sunday, my doctor wrote back to me within one-half hour from Japan where he was lecturing hundreds of physicians! I told him that rituximab had kept my brother cancer free for 14 years and it was also part of my treatment. He extended my therapy for another year of maintenance.
After an 18-month chemotherapy program, my IgM dropped by ninety-five percent! I have had a “very good partial response,” the closest state to a “complete response” for Waldenström patients. Two days after my 2014 appointment, I was elated with the news that further chemotherapy was not necessary. (Today my IgM is in the normal range!) My doctor said, “You are doing really, really great! Go live and have fun!”
I have done just that. For the first time in three years, I feel like a person, not a cancer patient. My husband and I went to Naples, Florida to celebrate; I swim four days a week, and recently met my goal of swimming a mile. Also, I went jet-skiing with my brother; and I play my piano, read about spirituality and spend time with friends and family who have been so generous with me.
On a return flight from seeing my family, I was exhilarated and joyful to be alive and more passionate than ever about “giving back.”
When I asked my doctor how I could help, his Administrative Director referred me to the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) where I now volunteer as a support group leader in Northern Virginia/Washington DC/Western Maryland and am a member of the 2016 IWMF Educational Forum committee to be held in Providence, RI in June. In the process, I have learned a great deal from their patient services and web-site and have met many WM friends who make my world less lonely with our rare disease.
“Learn everything you can about your disease, ask questions of your doctor, track your own progress, be proactive, and don’t ignore new symptoms.”
With the help of a nomination from IWMF President, Carl Harrington, I had the honor of becoming a Lymphoma Research Foundation (LRF) Ambassador in October 2015 – complete with media training by a public relations firm in Brooklyn, New York at the LRF 20th Annual North American Educational Forum on Lymphoma. The other Ambassadors from across the country are truly devoted, inspiring, and accomplish awesome activities to expand awareness of the more than 70 lymphoma subtypes. The opportunity to spotlight the need for future research and bring attention to all cancers with community outreach and media exposure is exciting.
My message to my fellow Waldenströmers is to become your own best health advocate. Learn everything you can about our disease, ask questions of your doctor, track your own progress, be proactive, and don’t ignore new symptoms. Next, see a Waldenström specialist or have your local oncologist consult with one. I have witnessed these steps make a dramatic difference to Waldenström patients many times over.
It is my good fortune to have a whole host of tremendous doctors who continue to watch me vigilantly to this day. I am eternally grateful to each of them. May we all find a path to good health and make a difference in the lives of our fellow Waldenströmers through the dedicated efforts of the Lymphoma Research Foundation.