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Aug 28, 2017 Latest post:
Sep 12, 2017
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Hi friends, Since January I have been dealing with a health issue, a rare blood cancer. Back in January of this year (2017), I had back pain and had not been feeling well. My chiropractor sent me to get a physical. Later, the doctor called with blood test results that showed I had acute kidney failure so should go to the emergency room to be admitted. In the hospital, I was diagnosed with Multiple Myeloma and I began chemo therapy right away. The treatment was able to reduce the detectable amount of myeloma to 0 and increase the kidney function to be able to avoid dialysis.
After several months of treatment and testing, my doctors recommended that I have a stem cell transplant. I had consults at the University of Minnesota and at the Mayo Clinic and decided to proceed with the process at Mayo. We have been down here for testing and consultations off and on since mid June. The stem cell transplant is autologous, or from my own cells. After I cleared the extensive work up and completed some of the education on this whole process, we made a temporary move to Rochester on August 3, 2017 to start the process of collecting the stem cells and prepare for the transplant. The collection and transplant process is done on an outpatient basis here. We are staying at the Gift of Life Transplant House. It provides a reasonably priced place to stay where there is automatic community who understands the process and risks of transplants. The clinic and the house require that I have a 24 hour caregiver to accompany me to appointments, monitor my status and communicate with the clinic if needed. Jan is currently the primary caregiver. We have had some regular assistance from some wonderful friends and family.
Once we were here, they gave me shots over 4 days to stimulate the bone marrow to send the stem cells out into the blood stream and inserted a central line for the collection. That line was then hooked up to the collection machine which is very similar to a dialysis machine. For 4 hours every day, I was connected to the machine. It removed my blood and separated out the stem cells, then returned the blood to my body. I was able to collect the amount needed in two days. The stem cells were sent off to the lab where they were cleaned and frozen to be ready to put back in during the transplant. I then had 2 days of heavy dose chemo to prepare for the transplant. The idea is that the chemo kills all of the Myeloma cells that might be still present in the bone marrow. As with most chemo, it also kills all the other quickly reproducing cells like skin, stomach and throat lining, all of the cells that create red blood cells, white blood cells and platelets in the bone marrow. Immediately after the two days of Chemo, on August 14, 2017, I had the transplant. That involved putting my stem cells back in via the central line. The process was very much like a blood transfusion. Then we started daily visits to the transplant unit for check ups, waiting for those dormant stem cells to find their way home to the bone marrow and set up shop again to start producing red and white blood cells and platelets . In the meantime all of those blood cells that keep us healthy, alive , fighting infections, and clotting blood when needed were starting to die off naturally. Because all the stem cells were killed by the chemo, there is no way for the body to replace them. So the clinic watches very closely for signs of infections and the side effects of the chemo. They told us that the worst part was usually from day 3 to day 12- 15 post transplant. Usually the levels recover enough by day 21 to 28 to be able to return home. They also said that about 70 percent of patients would be admitted to the hospital sometime during the 3 to 12 day window. We are writing this on day 11 from the hospital. More about that below.
This has been a lot for Jan and I to deal with, we have faced this serious health crisis with as much courage and grace as we can muster. We are grateful for all the support from my doctors, family and friends. We welcome your positive thoughts, healing energy, encouragement, cards and any funny jokes you want to share. (the hospital and the transplant house do not allow flowers or plants) Please keep Jan and me in your thoughts and prayers as we travel along on this journey.