PEN-Powered Activity Guide VI

I read from a l ist that I had prepared detai l ing what I had been able to do prior to feel ing unwel l and what I could do now . As I went down the l ist for several minutes , she looked at her watch in a disgruntled manner , final ly asking me “ What do you want ?” I told her that I wanted to feel wel l . I did not feel wel l and bel ieved that something was wrong . I wanted her to do more tests . She agreed and also sent me out to schedule an appointment in six months . One week later at 8 AM as I was on my way out to work , SHE cal led me to tel l me that she had scheduled a bone marrow biopsy ( BMB ) for the next day . I cleared my calendar . The BMB results confirmed that I had stage 2 Myeloma with more than 80 percent involvement in my bone marrow . My husband and I learned of this on the day before Thanksgiving . We were both in shock . We had so much to learn and at that point had no idea how much this diagnosis was going to change our l ives . After a quick success of additional tests scheduled STAT , I started chemotherapy within two weeks . Getting a diagnosis took A LOT of persistence and determination when special ists minimized what I knew about my body — that something significant was wrong . And it was . Today is five years to the day of that diagnosis and I sti l l wonder whether I would be diagnosed today if I had not INSISTED upon further testing . To her credit , the oncologist / hematologist did eventual ly acknowledge that I was right to press her to do more tests and that it was through my self - advocacy that I achieved a diagnosis . What I would hope that others would take away from this story is how essential it is to be aware of your own body and to keep advocating ( again and again ) for yourself with doctors even when your symptoms are minimized . I was trained to advocate for others as a social worker , but it took intentional work to give myself permission to say no to doctors at first pol itely and then later not so pol itely to demand additional testing unti l an outcome was achieved that explained my health issues . Be persistent . You know more about your symptoms than anyone else . Do not stop unti l you find out what is going on with your body .


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