Margaret wrote this heart-wrenchingly honest and lucid account of her young husband’s passing soon after his chronic lymphocytic leukemia (CLL) went bad and transformed to Richter’s Syndrome or Transformation. Not everyone who develops Richter’s has such a grim story, but sadly too many still do.
I am still processing Keith’s death and all that happened during this last year of treatment. Somehow, I feel that I can share with you my evolving thoughts as I try to find some meaning in everything. It is specific only to me, but I wonder if other caregivers have had a similar reaction:
As I reflect on Keith’s disease and the arc that it took, I realize now that he never stood a chance against it. But we moved forward with treatment because that is what you do when you are only 56 and get this diagnosis. Yes, we read up on Richter’s Transformation and were aware of the dismal survival rates. But we had the best doctors at the finest institutions, and we mistook the fact that the medical team had a clear path forward for confidence that the treatment would work. And I suppose every patient somehow feels like they are an exception.
Caregiving is challenging on so many levels and became even more so in his final weeks. In addition to all my caregiver responsibilities, I somehow also became the one responsible for reality checks. I was the first one to bring up with the doctors that I didn’t think Keith was going to make it through the treatment. I was the first to tell Keith that I thought we should begin a conversation about hospice. The medical team, I am sure, also knew that we had run out of options, but — from my perspective — they took too long to bring it up.
When the team finally sat down with Keith for that final difficult conversation, the doctor did so with grace, respect, and compassion. I only wish the doctors had been as forthright from the beginning. I’m sure we still would have moved forward with the same treatment plans but with a more realistic sense of the outcome. And it would not have fallen on me — the grieving overwhelmed spouse — to bring up the hard truth.
Again, thanks for all you have done with the CLL Society and your ongoing advocacy for patients. That sense that you “have our back” made me think that I could share this reflection with you.
Writing my thoughts down helped me process them, so thanks for “listening.”