Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. I was diagnosed with chronic lymphocytic leukemia (CLL) in late 2011 at age 35. It's a maddening, slow-moving cancer that doesn't require treatment until the patient becomes sufficiently symptomatic. Doctors call this pre-treatment phase the watch and wait (W&W) period. I was on W&W for nearly seven years, in which I experienced mild but increasing symptoms (night sweats, enlarged lymph nodes, humongous spleen, fatigue).
During that time, I followed listservs and blogs about the disease and looked for information about how people coped with W&W. I was annoyed that people didn't write more about W&W, as it takes a peculiar toll on the psyche. I guess what happens is that, because CLL patients spend as much time as possible trying to keep their cancers in the periphery, they spend W&W living their lives--not writing about the monster that chases them ever so slowly. And I did the same. To those who are newly diagnosed, my apologies for the oversight. More energy should be directed to those who are both "fine" and very not "fine." But perhaps there is comfort in the knowledge that those on W&W tend to adjust and make the most of their time. This is CLL's strange luxury.
Now that I actually require treatment (starting with chemo) and am going to have more visible symptoms from the CLL and its treatment, it seems like high time to start journaling my experience. As a throughline for this journal, I can't express strongly enough how important my Mayo care team, friends, family members, and supporters have been in this process. This is just the beginning of a long journey and I cannot imagine how anyone gets through it without support.
If there's anything that I haven't covered here or in the journal entries, please let me know, and I'll try to answer. Oh, and if you don't get the site's title or the cover picture of a young, seemingly-incarcerated Eddie Murphy, clickity the following link: https://vimeo.com/261080097