Good news! The plan is that I’m moving home soon!
I left Marin on March 9 to come to Stanford Hospital to have my bone marrow transplant (BMT) and to be cured of AML forever. I was discharged on April 8, and my Mom and I have been living in a very nice townhouse on the Stanford campus since that time. Because I’m doing so well healing, we recently got the green light that I’m ready to live at home again! The moving date is planned for June 18 which is +91 days since my BMT.
There are a few important things that have to happen before I go home though. On Wednesday, June 11, I will have a bone marrow biopsy (to ensure that there is no cancer left in my system), and that same day I will have my central catheter removed. My Mom and I will be at the infusion treatment area (ITA) at the hospital for most of the day. It will be my seventh bone marrow biopsy since last October, and the first without my boyfriend Andy holding my hand — but my Mom will support me! Bone marrow biopsies are never fun, and have usually been quite painful for me – so I’ve asked for pain killers this time…
The catheter was inserted into my chest three months ago. During the month I was in the hospital, it was used to deliver chemotherapy, blood transfusions, antibiotics, IV food and hydration, and the stem cells from my anonymous donor. The catheter has also been used twice a week since I left the hospital at the ITA to draw blood for the complete blood count (CBC) which measures my levels of white cells (fight infections), red cells (carry oxygen), and platelets (form blood clots). The doctors and nurses are pleased with my blood counts, which are all slightly below a “normal” person’s levels, but they say my counts are “normal” for a BMT patient at this time in my healing process.
I have an appointment with my bone marrow transplant doctor at Stanford Hospital, Dr. Robert Lowsky, on June 18, and afterwards, Andy, Mom and I plan to hit the road back to Marin County. I will learn the preliminary results of my bone marrow biopsy at that appointment and am anticipating and praying that it will be cancer free, now and forever! If you’d like to support my healing by envisioning a clean bone marrow biopsy with only healthy cells, I would greatly appreciate your support. I intuitively have felt since the BMT that the leukemia is gone, but it will feel really good to have the biopsy results to confirm that hunch.
June 27 marks the magic Day +100 when I can start to go outside in public without my mask. I’m thrilled to be approaching day 100, as the first 100 days are the most critical for BMT patients. It’s a landmark to be post day 100! However, I will remain at increased risk for developing infections and the post-transplant illness called graft vs host disease, and will still be taking numerous medications, so the healing and doctor appointments will continue. I’ll be seeing both my Stanford and Kaiser Permanente doctors for some time after I move back home, and bone marrow biopsies will be scheduled for every 3 months.
The only sad thing coming up is that my Mom will be flying home to Pennsylvania soon after we return to Marin. She’s my amazing caregiver, Mom and friend, and I will miss her, our evening walks, night-time movies, cooking and companionship.
Throughout this entire process, I continue to be so grateful for everyone’s love and support, and for the skill of the doctors and nurses who have been treating me. So many people are still sending prayers and good energy – thank you! This is very helpful. I definitely have a lot more healing to do to strengthen my new immune system, and increase my blood counts and energy.
I recently had a birthday, and my motto is, “45 and Stayin’ Alive!” Does that make you want to start dancing to the 70’s Bee Gees’ song? “Ah, ha, ha, ha stayin’ alive, stayin’ alive…!” Hope to see you on a dance floor soon.