How Blood Cancer Changed Me
My diagnosis of MDS was not a complete shock to me. As a retired RN I understand with the symptoms I was experiencing I either had MDS or multiple myeloma. I, of course, had normal anxiety about my subtype which decreased once I found out I had Del5q. I had to alter some lifestyle changes due to fatigue, weakness, etc., until I was placed on Revlimid. I had been transfusion-dependent prior so I was able to return to reasonably normal life activity.
I had to deal with side effects of drugs which did create issues with GI distress and change in the taste of many foods. Overall I was doing well. Now my life has changed dramatically again as I now have gene mutations that are significant - I'm having to alter my lifestyle as again my counts are again decreasing- anemia has returned, my immune system is very low, my energy level has dropped dramatically, limitations on contact with others as to large crowds( missed some concerts I wanted to attend) and overall naps are frequent again.
I am awaiting clinical trial admittance so I'm not sure what I'll be facing with those drugs. My family, especially my great nieces and great nephews, is my greatest joy, along with my church family. Happy to be able to appreciate every day I'm given.
How long did it take to be properly diagnosed?