Mar 17, 2022 Latest post:
Nov 18, 2022
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. We have put off doing a Caring Bridge site because we wanted to wait until we shared the rare diagnosis of Myelodysplastic Syndrome (MDS)/Bone Marrow Cancer with family and close friends - and for privacy during this difficult time. It started in July 2021 when I noticed a lump under my left arm. I went to the doctor and was prescribed antibiotics (7-20-21). The lump went away- but I started having pain in my left upper arm and shoulder. I ended up in the ER (09-2-21) when the pain became unbearable. The treating doctor did not examine my arm or run any tests-he gave me a shot for pain and sent me on my way. I was crying as we (me and my wonderful husband)left the ER. A week later (09-09-21), I again went to Urgent Care for pain that spreading to my neck and lower arm. The PA I saw did blood work and a CT scan after carefully listening to my symptoms. Ed and I expected to be prescribed another round of antibiotics and sent home. Suddenly things started happening fast, I was told I had I had a severe infection that had spread. They gave me a shot of an antibiotic and told me I needed to be immediately hospitalized to receive two different broad spectrum antibiotics and pain meds via IV. For the first time in over a month, I was pain free. I later learned that the diagnosis was possible a Necrotizing Fasciitis infection. While in the hospital, concerns were raised about my low blood counts. I was transferred via ambulance to Methodist Hospital at Mayo Clinic Rochester on 09-13-21 for a bone marrow biopsy and additional testing. I was released to home on 09-15-21 with instructions to avoid crowds and try to isolate as much as possible due to my low white blood cell count. I told my doctors that my son was getting married in a few days 9-18-21 - they did not want me at the reception because of the possibility of a Covid infection could be deadly for me. In the end, I decided to attend the rehearsal dinner, the wedding in our backyard, and the reception. I didn’t want to miss the chance to dance with my son for the mother/son dance. It was not the wisest decision, but thankfully I did not get sick. On 09-27-21, I was diagnosed with Myelodysplastic Syndrome(MDS)/Bone Marrow Cancer. I was lucky to have been diagnosed early as the MDS had not progressed leukemia. Since that time, I have had six rounds of chemo (twice I was hospitalized), had two more bone marrow biopsies and take a fistful of meds every day. We also found out that my brother, and only sibling, was not a match and I had no match on the bone marrow donor list. Luckily, I have been enrolled in a clinical trial for partial matches. Hopefully, I will be scheduled soon for my bone marrow/stem cell transplant. I have been isolating since the wedding in September, 2021. I only leave the house for my three times a week blood work, chemo, hospitalizations, bone biopsies and appointments with my hematologist in Rochester. Some days seems as if it will never end. Ed and I will need to move to Rochester prior to the transplant and spend the next 100 days living there. If you are interested in getting on the bone marrow registry, it is so easy - go to BeTheMatch.org and request a free swab kit. It is that easy and could save a life here or abroad. Thank you for visiting my site. Be well.