I was diagnosed with multiple myeloma as a result of a routine physical in September 1990. I was stunned. I had just retired. My husband and I planned to tour the United States in an RV for 2-3 years before moving to Hawaii. How could I have this disease that, by all accounts, was a universally fatal one in three years? At least that’s what my local oncologist told me when I asked for treatment options. I told him that I would simply be too busy to die in three years and chose to come to the UAMS Multiple Myeloma program under the direction of Dr. Barlogie. Oh, I did check out the program and Dr. Barlogie before I made the leap and I found out that Dr. Barlogie was not only the leading authority on multiple myeloma, but also a thoughtful and caring physician. Within 2 weeks of my initial diagnosis I was sitting in Dr. B’s office, hearing that I could have 2 bone marrow transplants, with the expectation of a complete remission and good quality of life. Chuck and I were very uplifted by the news. It was the first time anyone had been positive about the outcome of my disease.
I went into high gear, trying to find out how I could help in this process of healing. I think that the first step was my acceptance of the disease and the rearranging my self image to incorporate the disease. That acceptance did not happen immediately, but with time I have come to accept it as a part of me. Since it is a smoldering disease, I am always watchful of recurrent signs.
I did not want to be a victim, so I actively participated in my recovery period. I read books about cancer, the healing process, the mind-body connection and exercise. I explored visualization techniques, meditation, and nutrition and read many books to help me direct all my energy towards the task of ridding my body of those plasma cells that seemed intent upon destroying my body.
The chemo, in preparation for the transplants, of course, did the usual things. Hair falling out, nausea, fatigue, etc., but a few things that I did not expect happened too. My taste altered dramatically. It interfered with my robust appetite and enjoyment of eating and cooking, further compromising my nutrition. I was no longer interested in sex. Ultimately I also had several major complications including an attack of a “hepatitis-like” syndrome between my transplants which was diagnosed as Hep C in 1998. I had Porphyrea Cutaneous Tarda after the 2nd transplant that required bleeding on a regular basis. This was done by my husband while we traveled around in our RV seeing those parts of the country that were closest to Arkansas. I had Acute Hemolytic Anemia which occurred during a trip to Mexico and required a splenectomy. Through all of these episodes I focused on the goal of getting well, never doubting for a minute that I would succeed.
My husband was always at my side encouraging and supporting me with unconditional love. He went with me to all my appointments and helped interpret some of the things I may have missed. Without the mainstay of his support this journey would have been much harder. My family and friends were supportive and were always interested in my progress, so we tried to keep them informed.
I have had two recurrences and always Dr. Barlogie has had an answer. The medications and chemo have their problems, but they have allowed me to have a full and good quality life, productive and joyous. I now am more conscious of the present. I smell the roses and note the fresh air off the ocean. I am more compassionate and less judgmental. These and other changes in my outlook on life have changed, I hope for the better. It has not always been easy. Actually sometimes it has been rough going, but I never once doubted the outcome, a life of good quality. I have lived to see our two children marry, our two grandchildren born and many other wonderful events of life. I am active in the bridge community here in Kona, grow orchids and otherwise live a fulfilled life. Has it been worth it? You bet it has and I am looking forward to many more years of the good life here in Hawaii.
The journey you are about to embark upon will have many choices. No matter what they are or what you choose, always remember that you are an integral part of getting well. Great as they are, the doctors, the nurses, the medications, etc., they cannot do it alone. You must be right there with them, with a positive attitude and doing what you can to control this disease. And never, ever lose sight of your goal, to be in complete remission.