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A Patient Story

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By An Anonymous CLL Patient

Back in 2012, I went in for my annual checkup. My doctor said, “I need to refer you to a hematologist since your WBC is a bit elevated”. I had no idea what was going on, however, a friend said that it could be leukemia, so I decided to go directly to the City of Hope and this is how my CLL journey started.

I went through the flow cytometry and FISH tests and after the test results were ready, I was told that I had CLL. I had no idea what I had and what CLL meant. Then, the doctor explained it a bit more – that it is a very common form of leukemia. He also said that every 3 months I had to go in for a blood test and at this point he wasn’t going to give me any medications or treatment. So, lo and behold, I became a City of Hope “regular.”

I left the hospital with tremendous feeling of despair, sadness, anger and frustration, as most of the CLLers unexpectedly go through with such a diagnosis. For a week or so, I remember that I wasn’t able to sleep and at times, crying. I wasn’t afraid of dying but hated the fact of going back and forth to the hospital and not knowing what they were going to do with me. After a few months, I finally accepted the fact that yes, I had CLL and that’s all there is to it. I also realized the fact that things happen to everybody and nobody is immune. I also ascertained that many of us will get hit with an unforeseen health issue no matter what, since again no one is immune. So, basically this was my turn in life, and I was very much thankful that it wasn’t a pancreatic cancer diagnosis that has a very small survival rate versus CLL.

Another big problem for me was the idea of “watch and wait.” How can you wait if you are supposed to have cancer, and then watch, when there are options out there to reign in your cancer and make you well again? This idea was also bothering me for a few months. Finally, after a few initial months, I decided that I needed to do something. I could not let CLL run my life and make my remaining days miserable. Frankly, I did not want to be a slave to CLL. I was going to think it through very seriously and come up with an action plan to somehow control this malady. The first six months after my diagnosis was the darkest period of my CLL challenge and the most depressing!!!

Before revealing my plan, I have to say that I have always been an advocate of good nutrition and working out. So, I decided to tweak my previously good diet and even make it better. I decided that a plant-based diet was going to be my number one choice. At this point I became 95% vegetarian, while allowing a piece of wild salmon a couple of times a month.  I also stopped eating sugar, rice, pasta, bread, processed food and any refined carbs. Of course, no sodas whatsoever. This routine has helped me to lose a few pounds and maintain an outstanding BMI. Furthermore, no alcohol, and definitely no smoking. This dietary pattern was a bit hard to adopt since it was extremely cumbersome to stay away from bread.   However, I strongly believe that we can overcome any addiction whether it is bread, alcohol, sugar or anything imaginable that we have become slave to. I started practicing PMA (positive mental attitude) and through it, the adaptation process became much more manageable and easier. So, even though the beginning of this extremely strict eating pattern was very difficult, it sure started getting easier every time I thought that we CLLers are prone to a secondary cancer. I will continue enjoying my veggies and sugarless lifestyle forever since the results have been extraordinarily amazing. Since everyone is different, I am not recommending my extreme dietary selections to anyone, but if you decide to clean up your diet and implement some changes to help your overall health, you should do it very cautiously.

Here is a bit about my biological markers: I have had favorable markers throughout, and my WBC upon diagnosis was 14,000 /µL. Through these past eight years, the highest it’s been was 19,000. About four years ago, it continued to decrease and at my last blood test about two months ago, it was once again 14,000 just like the day of my diagnosis.  I can live with that!!!!  I have been going in for a blood test once a year now and I really feel great. I am super active with a lot of energy.

I wish to dedicate this last paragraph to thank Dr. Brian Koffman and Patty Koffman for their selfless dedication to a great cause. Also, to all the other people behind the CLL Society organization who have done an outstanding job to keep all the CLLers up to date with the latest in treatment options as well as the great choices of medications available to all of us. Last, but not least, the CLLers who have shared their CLL journey with everyone through the cllsociety.org website in order to give hope and positivity to all of us. I am grateful for all of you and the extraordinary and unique learning platform the cllsociety.org has been!!!!!

Originally published in The CLL Society Tribune Q1 2021.