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My story began 33 years ago when I was diagnosed with MGUS (monoclonal gammopathy of unknown signifigance) with an M spike. The doctors tested me every year because the expectation was that at some point it would progress to multiple myeloma. Well, many doctors completely ignored that part of my medical history as I started going from one doctor to another when my body began to break down almost four years ago. Even my "raccoon eyes" didn't alert any of them or even raise any red flags. In fact, other than trauma, there are only 4 reasons for spontaneous black eyes. Every one of them is an emergency, yet at least 7 doctors simply ignored them.
So many things were going wrong in my body, but I just couldn't figure out what could be causing it. I wasn't the only one who was stymied. The doctors either had no interest in getting to the root of my problems, were too busy to pay sufficient attention, or were too distracted by the crush of other patients to invest the time and consideration to pursue a puzzle...MY puzzle. I am not faulting them for becoming embroiled in their own lives and work, but I just wish they would be honest and tell people when the case is beyond them or just too challenging. That would allow us to look for help elsewhere instead of continuing to wait and hope that they will provide the answers and direction for the resolution of our health issues. I guess it is too hard for a physician to admit that a case either doesn't interest them or that it is beyond their knowledge.
After months of many emergency room visits and hospital stays, I finally ended up with Dr. Chakra Chaulagain, a Hematology/Oncology doctor at Cleveland Clinic in Weston, Florida, who FINALLY diagnosed AL Amyloidosis. He recommended that I see Dr. Comenzo at Tufts in Boston, as he had been Dr. Comenzo's Fellow and was seriously impressed with Dr. Comenzo's abilities. He was more than right. Dr. Comenzo is flatly amazing!! And his team is just the very best!!!
I have been traveling to Boston, sometimes weekly and sometimes monthly for 18 months, getting chemo and a study drug and getting to know this brilliant team! I now, unreservedly, put my future in their most capable hands. They will do their best and I will do my best and everything will work out as it should! When I am in Florida, I get treatments from Dr. James Hoffman with the University of Miami. He was Dr. Comenzo's Fellow for two years at Sloan Kettering in New York. Dr. Hoffman is also an excellent physician. He told me that Dr. Comenzo has an intuition about stem cell transplantation. He said his best advice was to do whatever Dr. Comenzo decided and not to push one way or the other as I could totally trust Dr. Comenzo's intuition. Well...I am doing just that! I accepted it when he said no but was thrilled when he changed his mind and came to believe that I should be an exception to the "not over 70" sort of guideline. Thank you, G-D! I have so much to do that I must get well enough to do it!!
Thank you all for following me here. I hope to hear from you all. Take care of yourselves and stay safe.