My adventure in the world of CLL started in February 2013, when during a routine physical, my physician noted that my white counts were “elevated.” Having a rather offbeat sense of humor, he was certain that his blood analyzer was faulty, and a second blood test would most definitely prove that. Well, the exact same numbers came up, and while he insisted that his machine was clearly broken, perhaps I should go see a hematologist.
My adventure in the world of CLL started in February 2013, when during a routine physical, my physician noted that my white counts were “elevated.” Having a rather offbeat sense of humor, he was certain that his blood analyzer was faulty, and a second blood test would most definitely prove that. Well, the exact same numbers came up, and while he insisted that his machine was clearly broken, perhaps I should go see a hematologist. After a battery of unpleasant tests and trips to multiple hematologists, I was diagnosed with stage I CLL in June 2013 and clinically have been in watch and wait ever since. Watch and worry is plainly a better descriptive clinical term.
Some months ago, I met Andrew and Esther Schorr at the CLLPAG conference in Niagara Falls, Canada. I was there with my father, a retired physician, who was incredulous to hear that “watch and wait” was a real protocol when I told him that I have CLL. My hope was that this conference would make him better understand that under current science and prevailing clinical protocols, early treatment does not improve overall survival.
When diagnosed, and as a technologist at heart, I craved information to better understand CLL and its treatment. Like most other people, I continue to do a lot of research on CLL, and Patient Power is one of several regular “go-to” sources. At the CLLPAG conference, I recognized Andrew from his picture, and went up to him to think him for his hard work and advocacy.
Historically, my gregariousness gets me “volunteered” with some frequency. For example, many years ago, I complained about some things in my community. Little did I know that my letter of complaint was actually viewed as an offer to fix the issues and, ultimately, led to my election as Association President. This propensity and several conversations with Andrew have led to writing this blog the initial focus of which will be simply, life in watch and wait. I promise not to get morose or talk about my numbers, at least not too much, and only when it is relevant to you, the reader.
Although I do a lot of public speaking and writing on professional topics, I have never written a blog before. As a neophyte, we will be learning together. Talking in an open forum like this about something as personal as health is way outside my comfort zone. However, if this blog can help just one person, then it will be worth the effort. While I do have some ideas in mind, your input, thoughts and ideas will be critical to making this successful. So let’s get started!
Back story is important to setting context, and mine is no different. First, I am writing under a pseudonym because of the bias against older workers and the chronically ill in corporate America. Unfortunately, and despite the benefits of our experience, we are nonetheless viewed as expensive liabilities. While discrimination due to health and age is illegal, it is very hard to prove. I work very near and occasionally in the public eye. If you Google (interesting that a company name is now a verb) my real name, it would come up more than once.
This has created a duality in that none of my professional peers and clients has the slightest idea that I have cancer. They do notice that I am fanatical about exercise, health and nutrition. I get teased about my ever-present bottle of hand sanitizer, chided about using WebEx in lieu of plane travel and avoid large meetings whereever possible. If they only knew the real motivation.
Second, I am not angry nor feel the least bit bad or sorry for having cancer. I simply won the wrong lottery. The day I was diagnosed, I got onto my bicycle and rode 60 miles hard and fast. It was my way of saying to the CLL that it had picked a fight with the wrong guy. It may still win, but I will resist this to the last fiber of my being. Perhaps most importantly, I continue to look forward and steadfastly refuse to be a victim, look back and ask about what could have been.
Nonetheless, Led Zeppelin’s song “That’s the Way” did precipitate a small meltdown, in private, when the reality really hit hard that I DO have cancer, and there is nothing to that can be done about that. The idea I might not be able to be play and be with my family and friends hit home.
Third, you have to play the deck of cards life deals you, not the hand you want. My CLL diagnosis has been a motivation to get to a better place. Facing your mortality has that effect. Your hematologist saying he needs you to be strong in case they need to hit you with FCR also has that impact. In the first year of my diagnosis, I did three century rides in four weeks along with two metric centuries in between, I lost 26 pounds, and got into the best physical condition since my early 30s, a time nearly 25 years ago. I have been tested by a sports physiologist, and my VO2 is in the top 1 percent of all males my age. This puts me on a par physiologically with people in average health that are 25 years younger. Being physically active is one way to feel empowered to fight back.
Fourth, I appreciate that I am the luckiest person around, CLL notwithstanding. I have a wonderful wife, a great family, a small but great circle of friends, and a fabulous support team that is truly interested in beating this. This includes an internist, hematologist, sports physiologist, therapist and an oncological nutritionist. I get such utter joy from riding my bike 100 miles and feeling the wind on my face. So what is not to like?
Well, the reality is that I do have a cancer that presently has no cure. And yes, every four months it is another trip to the hematologist to face Damocles sword. My white counts could easily skyrocket, my lymph nodes get really big, and my liver and spleen could get enlarged. It is rather perverse that I am in the best shape possible in part to deal with the potential eventuality of getting “knocked down” by chemo. I am not sure what scares me more, the cancer or the destructive effects of chemo.
Finally, by far the hardest thing is having to tell friends and family that I have cancer. It is enormously painful. You end up ruining their day, and they don’t know what to say. I can deal with the cancer, but dragging loved family and friends down a couple of notches is really hard. Telling my children that I have cancer was one of the worst moments of my life. It took months of work with a therapist to craft a message that was focused on hope and that I would be in their lives for a long time.
Okay, so the above is my story, and I am sticking to it! There are a lot of topics and issues to cover, and each paragraph above could be its own conversation. I do want to delve into the duality of living with CLL, physical fitness and exercise, among others. Again, please send your thoughts and ideas. Thank you for reading!
Always hope. Never quit.