My own journey with Myeloma began in Aug. 1999, when I was diagnosed with a solitary plasmacytoma in my right femur prompting an immediate hip replacement. When I was told the nature of my tumor I replied, “Multiple Myeloma? Is it like Melanoma?”
I was soon to learn much more about this disease and its individualistic tendencies. Each patient faces an uphill battle of education; learning about the disease, how it may affect them, current treatment options and potential side effects.
Over my 14 year journey, I have had two stem cell transplants, eight different lines of chemotherapy and have participated in two clinical trials. Happily, I can say, I am still here living a full and productive life….with retirement now a short two years away. Back in 1999, it was not possible to allow myself to even dream I could someday retire!
In July 2005, when I realized – I have lived longer than first expected…I decided it was time to give back and to help others cope with this challenging, evolving disease. With the help of the International Multiple Myeloma Foundation, I created the Central Jersey MM Support Group. At my first meeting, I welcomed four myeloma patients into my home. Now, our group has grown to over 70 patients and caregivers, meeting monthly at the Steeplechase Cancer Center in Somerville, N.J.
It has been very rewarding for me to have the opportunity to bring together patients; especially the newly diagnosed and their loved ones, who naturally feel stunned, overwhelmed and scared, to meet other patients who have walked in their shoes. They meet patients who have experienced a wide variety of chemotherapy treatments and yet, still enjoy a high quality of life. Patients and their families are uplifted and inspired to interact with patients who have lived much longer than those dreadful mortality statistics.
Of course, having Myeloma is not for the faint of heart. Recently, I relapsed after using two of the newest FDA approved drugs for Myeloma. The evolution of new therapies for Myeloma is vital for me and other patients like me who have utilized all the current therapies. It is exciting to know patients are living longer with Myeloma, but, it also means, many more people will find themselves, like me, in the unenviable position of praying for a one more new therapy and the hope it will bring us closer to finding the elusive cure.
However, I remain positive and hopeful, accepting the responsibility to make my life one of enjoyment, fulfillment and good humor.
– Paula R.