May 23, 2018 Latest post:
Aug 12, 2018
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. Thank you for visiting.
Last Monday, May 14th, I went in to see my family doctor (PA) because of an on-going cough, pounding heart beat, severe fatigue, breathlessness, general weakness and pale coloring. She did some blood labs and found that all my blood levels, hemoglobin, WBC (white blood cells) and platelets were critically low. I was instructed to go to an ER within the hour to get a blood transfusion. Four units of blood, a bone marrow biopsy and four days at University of MN Medical Center later, I was diagnosed with MDS (Myelodysplastic Syndrome) or sometimes known as pre-leukemia. MDS is a form of blood cancer which renders my bone marrow abnormal and not able to produce blood the way it should. They found that I have 13% immature WBC (also called "blasts") in my bone marrow which lands me with a SAEB2-Intermediate classification of MDS. I was released from the hospital one day after my diagnosis, which I was very happy about, and then I began out-patient chemotherapy yesterday, Monday May 21st.
Yesterday was a long day at the Masonic Cancer Clinic. I met the doctor who will be my primary for the next several months, Dr Warlick, who specializes in MDS. She was awesome. I feel like we finally got honest answers about the severity and details of my case and what treatment will look like. Dr Warlick has me on a path that will involve 3-4 cycles of chemo (each one month long), then stem cell transplant as early as September if my bone marrow is responding the way it should to the chemo. My chemo cycles entail visiting the clinic once a day for seven business days to get an injection. Then I take three weeks off before repeating the seven days. I am also involved in a drug trial which entails taking a pill three days a week for three weeks then taking a week off before starting that again. Both drugs are chemo agents.
Stem cell transplant is serious business and takes months and months. It begins with intensive, in-patient chemotherapy to kill off all my existing bone marrow. I am injected with the donated stem cells and then stay in the hospital for several weeks for monitoring and observation. Once I am released from the hospital, I will have to have 24/7 observation in my house (this could be anyone) for several months. But the cure rate with this procedure is quite good and I am good candidate considering my age and general good health. Crazytown that they can even do anything like a stem cell transplant!
The next few months are critical. With these first cycles of chemo my already low blood levels will continue to drop. When I venture outside, I am to wear a mask to guard against fungal or viral infections which would land me in the hospital. Eventually my counts will start going up and things will be easier. For now, I would love visitors but if you are sick or feeling like you are getting sick, please wait until you feel better!
Thank you for visiting and sharing this story with me. I am still rather reeling from all this. It is a surreal show stopper for sure. I will try to add journal entries regularly. If you want to sign up to bring food on the weeks I am getting treatments, I would love that! Just click on Ways to Help above, and then click Planner. Otherwise, please just leave me a message or keep the healing thoughts and energies coming!