Robert and I met with my hematologist on Tuesday and established a course of action.
Since the HGB and hematocrit levels aren’t falling very quickly, I’m going to continue with 2 phlebotomies a week and begin a regimine of 500 mg of hydrea (hydroxyurea or HU) daily.
My blood pressure is still too high (165/110) so I went back to the internist to check the dosage of the BP meds. Those have been adjusted, so it should be improving soon.
So today is my first day of the chemo and blood pressure meds with the warfarin (blood thinner) — makes me feel old to have a handful of pills in the morning!
I am still easily tired and my vision is annoyingly blotchy — this is most likely due to the high blood pressure I am told.
I attended the World Class Leaders reception for Leadership Gwinnett this evening — It was so great to focus on something other than this illness!
The phases of dealing with a life altering illness are much better read about than experienced. It is tough to strike a healthy balance between reading everything one can find on the illness, treatments, side effects and clinical trials and work assignments and family life. All three must be squeezed between naps, which are no longer voluntary.
Last week, I felt an incredible sense of relief that there is a “name” and real cause for the extreme fatigue and other symptoms that have been gaining steam in recent months. It’s not all in my head; I’m not a hypochondriac… funny how the self-doubts can mount when there are no answers.
After the relief came the overwhelming desire to fully understand the disease — what EXACTLY is it, how does it happen, what happens next… mix one diagnosis with others and what do they mean?
Right now, I’m okay with developing a series of questions. Each answer seems to lead to three more questions.
I am so GRATEFUL that we have gifted humans who choose to study the sciences — and never underestimate the importance stem cell research has on all our lives. The results of their persistent curiousity is already giving me more time.
Better living through chemistry!