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Multiple Myeloma Discussion • February 4, 2023
Sharing My Newly Diagnosed Journey
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Hello all, This is the first time I have reached out to others with multiple myeloma. I was diagnosed March 4, 2022. A total shock at age 58. I thought all I had was a pulled muscle in my upper middle back. No, I had rib fractures with dislocation. I had a large tumor and two little friends in my right lung. If that was not enough I had significant lesions along my entire spine and right side of my skull. I had the good fortune to get Dr. Elias Kiwan in Sacramento. Not that I am happy to have multiple myeloma stage III with 1q mutation (high risk) but at least it was not lung cancer with metastasis to the bone. I was misdiagnosed by an egocentric physician who was focused on her data points for her lung cancer studies. Sorry, I digress. I feel I can be critical about medical care because I have been an RN for 22 years. I have a great hematology team even though the beginning was terrible and wrong. I had 5 cycles of DARA (decadron, revlimid, velcad, darzalex) with 10 rounds of radiation to the lung tumor. Dr. Kiwan from the first meeting spoke of autologous stem cell transplant and all cycles were to set me up for transplant. My disease was significant but my labs always remained like a normal person. I was fortunate. In the beginning I made the mistake of looking on the internet for myeloma stats such a mistake. There is such great treatments today with great outcomes aka remission. But, in the beginning I was spinning a lot. I am sure you all can relate. The life I thought I was going to have ended. I still see myself as a newly diagnosed. I had more bad days in the first 3 months with cancer related fevers, bone pain, tremors, rib fractures and nausea. After the 5th cycle I felt almost normal. I was ready to go back to work. My emotional state went up and down. I am still angry that my body failed me and allowed the cancer to grow. Of course this turned to tears. I never even got COVID after taking care of hundreds of people with the disease. After working in hospitals for 38 years I am a realist. We will all get some disease or medical altering event. I was just hoping to have more time with being very healthy and maybe retire with years to leisure. Oh, well. I enjoy what I can and always look for the positive. I do not know what else to say right now. I have stated many other paragraphs. So, stay safe. All my best June.
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