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I still remember the day I was told I have CLL, I was 8 months from retirement and planning to do all those things I looked forward to.
I had no idea the medicine in the CLL field has become so advanced the way it is now. I learned so much more when I joined the CLL support group facilitated by Stephen Feldman, who has been on my side from day one listening and coaching me on how to cope with life as a CLL patient.
Our CLL support group was often joined by the CLL Society Chief Medical Officer and patient himself, Dr. Brian Koffman who remains instrumental in sharing any and all data related to our CLL.
Well, I retired 8 months after diagnosis, just as I had in mind. Retirement was somehow boring for me as my wife is 8 years younger and still has a ways to go prior to her retiring. In short, I went back to work for one full year until COVID-19 hit.
Although I am still on wait and watch, knowing that I have a compromised immune system drove me to retire again in April 2020, as working out of home was not a viable option for what I do.
Having CLL while COVID is out there is no doubt scary. As such, my outdoor trips were very limited to the absolute minimum.
On June 12, I developed a slight fever, I simply knew it was not CLL related, and feared the worst. Three days later, I got the bad news that I tested positive for the virus, and so did the rest of my family by the end of that week. I lost my sense of taste and my daughter lost her sense of smell.
I didn’t know what to expect, where to turn, what to do, and who to call. That same night, a close CLL patient asked me to call Dr. Koffman and get his opinion. I also shared this with Dr. Rosen, provost and CLL specialist in the City of Hope, CA.
The slight fever had subsided on the second day, my breathing remained normal, yet I had a cough which became persistent over the next 15 days. Despite all of us testing positive for COVID, I moved out of the house to my little 10×12 man cave and decided to separate despite all of us having the virus. The next two weeks were just slow, monitoring vitals, lots of fluids, and in my case, lots of sleeping as I was often tired. In my opinion, this was COVID related and not CLL making me weak.
My wife had dizziness and a slight fever, my daughter has constant headaches and some body aches.
Having CLL, I was prescribed colchicine, a med used to control inflammation for gout patients. To the best of my knowledge, there is (or was) no study found regarding the use of colchicine for COVID patients, (only a clinical trial for the previous SARS virus).
I kept in touch and sent daily reports to both Dr. Koffman and Dr. Rosen, who have been following me daily, and I must say; I am and will always be grateful for their guidance and support during that difficult time.
My symptoms stayed mild and on July 12 I tested negative for COVID-19. My family is also well and have recovered. I got my sense of taste back, yet my daughter is still trying to regain her full sense of smell.
It is enough that we must fight our CLL, adding COVID to the mix can be devastating emotionally, and for the unfortunate, possibly catastrophic.
I did my best and took ample measures; I have double masked when I went out and we have all been very careful with hygiene, yet COVID is highly infectious; it’s no joke. I still have no clue who at the house contracted it first and how.
Remember, we have impaired immunity, and I was one of the lucky ones, others may not be as lucky. Please, never let your guard down, it will be sometime before we can dig out of this pandemic.
The harder part came as I lost my mother during this period that I had COVID and could not travel to Beirut, Lebanon.
COVID will pass yet no one knows when. In the meantime, for all those out there with CLL, you must treat everyone as if they have the virus and protect yourself.
Please stay home, shop online, and try improve your cooking skills while home.
Dr. Koffman, Dr. Rosen, and Stephen Feldman, (the facilitator of the City of Hope CLL Society support group), my family and I thank you.