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By Susan Benjamin, Los Alamos, NM
An unruly visitor intruded into my life four years ago. Double-M (i.e. multiple myeloma) invaded to say, "It's time." With more than 30 years of classroom teaching, I knew what I must do after I emerged from feeling devastated and numb. I needed to form a team to help me control her: doctors, family and support organizations. I could not ignore Double-M. She would not go away. I needed to befriend her.
My brilliant family practice doctor suspected myeloma and my oncologist told me Double-M invaded my marrow. I then saw a specialist who has tamed many cousins of Double-M. Family gathered. I learned about Double-M from The Leukemia & Lymphoma Society (LLS), International Myeloma Foundation (IMF), the Multiple Myeloma Research Foundation (MMRF), the Myeloma Beacon and,most importantly, other patients visited by Double-M. Induction therapy worked well and Double-M acquiesced a bit, but would never go away. She was treatable but not curable.
We reluctantly became friends. Double-M taught me that quality of life really, really matters, side effects can be managed, and support teams ease the burden. Motivated by Double-M, I used visualization recordings created uniquely for me, often dozing as the tapes spoke to my subconscious. Anxiety subsided, healing emerged. I felt encouraged. My teacher genes revved up. Time to reach out to others. What has become most valuable in my myeloma journey has been the connections that I have made with other patients and caregivers.
I joined LLS’s First Connection Program , as I reached out to other patients. With IMF support, I founded the Land of Enchantment Myeloma Support Group . So many wonderful people also striving to tame Double-M. We unite in our quest for knowledge. We share in a safe environment as we gather monthly, often having speakers at our meetings. Knowledge and sharing are powerful tools. Friendships blossom.
Lifelong learning was my next step on this journey. As a learner myself, Double- M and I attended patient/family seminars, and became involved in a few online resources. LLS has an online chat meeting on Tuesdays, along with interactive discussion boards and blogs, IMF has Smart Patients and the Myeloma Beacon has blogs and interactive discussions. Accessing information is relatively easy in our technical world, but processing all the information is a more difficult and time consuming task. I have become savvy in such things as lab values and myeloma therapy options. I only have a cursory understanding of clinical trials. I’m thrilled that the landscape of myeloma is rapidly changing and growing.
My disease is in complete remission as I continue with maintenance therapy. The uninvited, unruly visitor is always with me now. She visits her relatives at the monthly support group meetings, patient/family conferences and blogs. Like most cancers, multiple myeloma causes enormous heartache. Yet befriending her offers me unexpected blessings. I befriend other inspiring and compassionate patients and caregivers visited by this unpleasant yet treatable cancer. Another blessing is my stimulating interactions with brilliant doctors and researchers. What has become most clear to me as I move through this journey is to savor the present and to enthusiastically embrace life.
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