It's been nine years since my diagnosis of CLL and am so happy to be alive and arguably in better health that I was when I received the life changing news in September of 2005.
When I was first told I had an aggressive version of an incurable cancer, I know little about CLL and what I quickly learned was discouraging.
Nothing back in 2005 had yet been shown to add a day to our lives. And the last few years alive with our disease were predicted to be full of misery.
Ibrutinib and idelalisib were just been being born in chemist's vials and were years away from first in human experiments.
I made appointment with our family lawyer to get my affairs in order almost sooner than I started my long term relationship with the wise and kind Dr. Tom Kipps.
I became a raw foodie but couldn't handle it and moved a bit closer to the center to become just a strict and mostly organic vegan. I cut back on my crazy workload and started to work out at the gym with weights for the first time in my life.
I got no help with imbibing horrible tasting Chinese herbs that I brewed up myself or from a year of acupuncture. Nothing came of many other well intentioned but ultimately impotent alternative healing approaches.
The cancer and its complications marched on.
Multiple hospitalizations for life threatening ITP, an emergency splenectomy where I lost half my blood, a failed clinical trial and bone marrow transplant, a move to Ohio for the winter 2 and 1/2 years ago to get on ibrutinib, and here I am, feeling better than ever.
I seen thousands of miles of travel in six continents, two daughters get married, my father's passing, and the birth of my first two granddaughters.
I have learned much from my mistakes and my fortunate choices, and I love to share what my experience, asking a lot of hard questions of the experts, and a ton of late night reading has taught me about surviving.
My hair is grey, my belly's flatter and I sure have learned a lot of hematology for a family doctor.
But best of all, I have met some of the most amazing people ever from all over the world, not despite, but directly because of my cancer.
My battle is hardly over, but I am still out there swinging.
Life is good.If you want a personal response, or just want to stay in touch, please email me at [email protected]. I have no other way of contacting. Thanks. Stay strong. After all, we are all in this together.
