So my vaccination schedule and history have been restarted, starting with all the vaccinations from birth and childhood into adolescence and adulthood. I had 3 intramuscular shots into my left arm and 5 intramuscular shots into my right arm (my dominant arm). It was my left arm that was sore and causing me a stiff shoulder for a day or two.
Since my gastroenterologist determined it likely that I have radiation-induced proctitis and colitis, I began taking Carafate Enema once or twice each day to reduce the rectal bleeding and sloughing of the mucusal lining. I still take two Lomotil and one Oxycodone (5mg) to reduce my diarrhea and abdominal cramps while the carafate addresses the bleeding.
I’ve been receiving IV immunotherapy and chemotherapy every Friday since we returned from the Seattle Cancer Care Alliance. My platelets and neutrophils have been too low for me to resume my per-oral chemotherapy. Ideally, I ought to be receiving R2 (Rituxan/Revlimid) to reduce or maintain my mantle cell lymphoma.
Kaiser-Permanente and Johns Hopkins would like to perform a full-body PET scan on Saturday, February 29th, 2020. We’re hoping to determine the full extent of my cancer and its progression (if any). From there, we’ll determine if I can remain on R2 (Rituxan/Revlimid), if I would need targeted radiation therapy to reduce specific tumors or clusters, or whether I would need to start another clinical trial either at Seattle Cancer Care Alliance (SCCA), the National Institutes of Health (NIH), or elsewhere.
Johns Hopkins would like to see me on Thursday, March 19th, for a follow-up appointment to my post-BMT (Bone Marrow Transplant). This would have been my 6-month follow-up appointment, but we missed that appointment since we were already in Seattle beginning cancer care. Dr. Bolanos-Meade will be reviewing my numbers, history, and looking for any symptoms of Graft vs Host Disease (GvHD). In previous conversations with Dr. Meade at Johns Hopkins, it was disappointing to him and our medical team that my bone marrow transplant was unsuccessful. I relapsed into aggressive mantle cell lymphoma less than three months after my transplant. My bone marrow and blood product have performed poorly since, but it’s indeterminate whether it’s just young bone marrow that is taking time to mature, or whether there is a greater issue yet undiagnosed and unresolved causing my blood product to be consumed as quickly as my bone marrow can produce it. Radiation-induced colitis or other unknown tumors are two possible causes for this latter idea.
And so it goes… I continue to take it day-by-day. I am still on Long Term Disability and have not yet returned to work since I was hospitalized for a week in November 2019. Once we know the results of the PET scan and meet with Johns Hopkins to discuss the results, prognosis, and treatment, we’ll know where we stand, what we’ll do next, and whether I can return to work part-time while continuing cancer treatment or if we need to begin yet another protocol or clinical trial.