Thursday - July 17, 2014
Today's periodic oncology consult ushered in the latest phase in my recovery: getting off the last of my medications. So long to my prescription strength antacid! We'll see if the GI issues of last year have healed and determine if I can eat (and retain) food without prescription assistance. So long to Acyclovir! This anti-shingles medication is continuing its negative impact on my liver enzymes (still elevated today). Rather than continuing the Acyclovir-induced liver damage, I'll probably opt to have the shingles vaccine in the next few weeks. Shingles is a concern because I actually had a (stress-induced?) bout of shingles the summer of 1986 while working in Taiwan and prepping for our September wedding. Our post-consult homework is to research the shingles vaccine. UCSF has administered it to 90+ post-Bone Marrow Transplant (BMT) patients with no adverse effects. Given the fact that my immune system is stronger than these patients, I should be able to avoid negative impacts. We'll see ....
My oncologist continues to help me "unring the bell" about moving forward -- BMT-free and scan-free -- with hope and optimism. My former medical team insisted that an allogeneic BMT was my best treatment option for long-term remission and cure. This plan was confirmed by a second opinion and is in accord with established and recently-affirmed national protocols. Having absorbed and accepted this information, the lack of follow-through continues to nag at me. I accept and welcome this gift of procedure-free living. But I remain vigilant. "Watchful waiting" doesn't take a holiday. Someday I'll be able to feel a flash of warmth or clamminess and not feel that twinge of worry. Someday ... but not quite yet. Next steps: shingles vaccine decision and continued bloodwork every three months to monitor markers that might signal a relapse.
All in all, that's a reason to celebrate!! Every month that passes without relapse signals a better prognosis. By some measures I am now 2 years NED (no evidence of disease). By my oncologist's timetable, I am now 1 year, 9 months disease-free since my last chemo treatment came to an end. By my own measure, I am now 2 years and 2 months beyond the dysfunction and disequilibrium of unrelenting pain and double vision. By any count, I am still in the clear and life is very VERY good :)
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