Energy Down, White Counts Up

            David’s energy is going down and his white blood cell counts are going up, from 13.73 on Monday to 29.48 today. The percentage of blasts in the bloodstream is also up, from 79.0% on Monday to 89.1% today. Meghan, the nurse practitioner, increased the hydroxyurea from 4 grams/day to 5 grams/day.

            On Monday, 8 June, David, Jim, Matt, and I went to David’s medical appointment. We gave Dr. Fathi a written statement of David’s wishes; Dr. Fathi read it aloud and we had a frank discussion. Then Linda Kafkas, the outpatient case manager, came in to discuss “bridge to hospice”. For now, David will continue to receive treatment: blood and platelet transfusions and hydroxyurea to try and curb the white blood cells (which are 89.1% leukemic). We plan to have hospice at home, which will start when treatments fail.

            I strongly recommend that anyone who is ever going to die or loves someone who someday will die read Being Mortal: Medicine and What Matters in the End by Atul Gawande. He is a Boston-based surgeon who has pondered end-of-life issues and writes about them. He describes the failings of modern medicine in dealing with the important decisions around death and gives concrete suggestions for improving the journey we all must take. It’s well-written and full of thought-provoking stories. I’m on my second read-through. Each time I understand his message more deeply and see more clearly how it applies to our situation. I’m grateful for his insight and wisdom.