I was diagnosed in September 2005 with an aggressive variant of chronic lymphocytic leukemia (CLL).
I was given a 5% chance of being alive in 5 years in 2005 based on the treatments available, my biomarkers, and the survival curves at that time. My odds worsened after a failed bone marrow transplant, new mutations, and recurrent platelet problems. Well, so much for using backward-looking data to project into the future. Boy, did they get it wrong, at least in my case! My survival reminds us that statistics are for groups, not individuals.
With all the new therapies, CLL management has radically changed for the better, and I have been the beneficiary repeatedly. I was able, just barely, to jump as fast and as high as possible, to grab one brass ring and then another and another that has kept me alive to see three children married and meet three granddaughters. I am one lucky man.
I am not going to recapitulate my CLL story. It’s easy to find on my blog and on the CLL Society website.
Instead, I will remind you of a few of the principles that have kept me alive.
- Become an expert in CLL / SLL or, at the very least, hire one.
- Think outside the box and question everything.
- Often, the best care is in a clinical trial.
- Expect the unexpected.
- Think at least two moves ahead.
- Be prepared to make life-changing decisions with incomplete knowledge and conflicting advice.
- Underreact to both good and bad news. Everything changes. Everything!
- Remember to enjoy every day.
Eighteen years is a long time, and I am grateful for every day. But I don’t celebrate specific dates. I can’t even remember the exact date I was diagnosed. I don’t observe new “birthdays” after transplants or CAR-T. It seems divorced from life, artificial.
Instead, I see it all as a long, continuous journey with highs and lows and mostly ho-hum days, at least as it pertains to CLL, more of a slog than a victory march with celebratory fetes on appointed dates. Maybe it works for you, which is fine, but not for me. I am too old and jaded and Zen for all that cheeriness. Instead, I celebrate thousands of small wins, good days, and days where CLL has no speaking role in the play of the day. My calendar has no fanfare or red-letter days related to CLL but circles around all the good times and special days with family and friends. I have been blessed with more than my share.
So, no 18 trumpet blares this September, though 18 is the Hebrew number for life, chai, so that’s pretty sweet. I just wanted to share it’s possible to beat the statistics. I plan to keep slogging along, trying to improve my odds and have another chance at another chance. Until I can’t, and that too will be okay….. as long it’s another 20 years or more away.
Stay strong; we are all in this together.
Brian
Brian Koffman MDCM (retired) MS Ed (he, him, his)
Co-Founder, Executive VP, and Chief Medical Officer
CLL Society, Inc.
