I have been living with Sickle Cell Anemia since it was discovered when I was 3 years old. Recently, I have been diagnosed with multiple myeloma and solitary plasmacytoma. I thought that having sickle cell anemia was bad enough. I have been living with pain all my life and have mastered it quite well through many operations like removing a ruptured gall bladder (a colestectomy), clippping 2 aneurysms( undergoing a caniotomy due to subrachnoid hemorrhage) and having 4 children by c-section. My crises pains over the years always trumped the pain I experienced on each of these occasions, partly due to my sense of pain management and not being a big fan of medicine, especially painkillers. Now, I find that I am dealing with a different kind of pain. I am also faced with the challenges of side effects from treatments and medications, other related maladies like uric acid elevation, a larger decrease in Hemaglobin and possible osteoporosis, to name a few. However, hard as it might be, I try not to feel sorry for myself or angry at my situation, and try to process one thing at a time, one step at a time, one day at a time.
Living here in Japan as a Sickle Cell Anemia individual, I have had to always be on the alert everytime I went into crisis and had to go to the hospital. Although the Hematologists are all qualified, I found that sickle cell anemia was a challenge to the majority of them. I found myself many times having a big say in my emergency care treatments. Now, with multiple myeloma and solitary plasmacytoma, I find myself in research mode before and after every visit to my hematologist, in order to understand treatments, medications etc. I just finished a cycle of radiation therapy for the treatment of the tumour on my leg, due to the plasma cytoma. I am now trying to find any cases of sickle cell patients with multiple myeloma.
Meanwhile, as a former performing artist, dancer, and now mother and housewife, I am still continuing my activities as Interior Organiser, working and training young staff in conference secretariat coodination, and still travelling. Although I pay strict attention to precautions I should take with foods, medications, and activities relating to my present circumstance, I am not keen on slowing down unless I am forced to. My activities in my community, with my children and their schools, help me to have a keen awareness and better understanding. That sinking feeling at the end of each day is quickly overshadowed.
Thank you for taking the time to read my thoughts.
Oh Eydie my heart goes out to you. I am so sorry that on top of Sickly Cell Anemia you are now having to deal with MM. I cannot imagine how hard this must be for you and your family.
I do not know how MM is affected by Sickly Cell. Blood cells are made in the bone marrow. I would want to talk with a hematologist/oncologist who knows what he/she is talking about. It does not sound like the ones you have know much about these two conditions. You might be able to find online help from major cancer centers in the USA.... MD Anderson for example. Even if it is a phone consultation, they might be willing to point you to helpful sources of information.
I will look in the Medical Library at my hospital to see if I can find something.