Five years ago, Toni underwent a bone marrow biopsy because of unexplained anemia. She was found to have myelodysplastic syndrome (MDS), a precursor to acute myeloid leukemia (AML). She was treated with four cycles of chemotherapy, which failed. We then went to the City of Hope for consultation, and she was accepted for a bone marrow transplant even though she was 75 years old. Because of COVID, the transplant scheduled for January 2020 was delayed until August 2020. She spent four months recovering at the City of Hope, and I was only allowed to visit her after two months. She returned home in November 2020, and the first year was filled with complications, most related to falling. She had three major falls while I was walking behind her as she used a walker. She suffered many bruises, lacerations, and fractures, but the worst fall resulted in a subdural hematoma and eventual seizures. Since her transplant, she has required the care of hematologists, oncologists, endocrinologists, ophthalmologists, orthopedists, internists, neurosurgeons, rheumatologists, physical therapists, but no urologists (my specialty for 50 years).
We are now nearly five years from the transplant. I have accompanied my wife to every one of her visits: doctor, lab, procedure, ER, or hospital admission. As her caregiver, I can assure you that the vast majority of medical decisions have been accurate, but not all were. My background and knowledge saved her from complications on numerous occasions. As the caregiver, you must understand each significant decision and learn about it thoroughly. The Leukemia & Lymphoma Society (LLS) has been extraordinarily helpful in this journey and has certainly provided support when we were overwhelmed.
To manage family and friends' interests, we joined CaringBridge.org, and I send a weekly update to alert all to her present status. Rather than a medical progress note, she insisted it be humorous. It is. In the past five years, it has had more than 26,000 hits. Toni and I have been married for 55 years, and we have three children and five grandchildren. We both had a wonderful career; she was a travel agent for 41 years, and I was in practice for nearly 50 years. These past five years, we have been in close contact more than ever. We are going through this together. Our love is now even stronger than before her illness, and we will continue the path.
Stuart
caregiver
