Maia's Into The Moonlight

LIVING WITH CLL - Chronic Lymphocytic Leukemia
"Evasion", oil on canvas, 110X120 cm


Living with CLL is like living with a Siamese twin. Anywhere I go, for a walk, to the movies, for a swim, to a friend’s house for tea, she goes with me. She is intimately with me, even when I sleep. No one sees the Siamese twin, but I carry her weight around, attached to me.

You get used to it, you can even forget about it for brief periods of time. But any pain, tiredness, cramp, has you wondering whether the CLL progressing. CLL is first located in your blood, in the bone marrow, then it moves into your organs. Your lymph nodes enlarge, so you not only feel them, but they are also visible, popping up on your neck, in your armpits, in your groin.

The doctors’ solutions so far are two: heavy chemo or not so heavy chemo. The main decisions are when to fire the artillery and what type of shells to use. A friend of mine -- one of the very few who defeated CLL -- wrote, “…they (doctors) are only experts in the three treatments they offer: slashing, burning and poisoning, also known as surgery, radio therapy and chemotherapy”. Right at the beginning of the CLL diagnosis I asked the hematologist – when told to “wait & watch” – if there was anything I could do to block the natural advance of the disease. Should I avoid certain foods, should I follow a special diet? Should I take vitamin supplements to help with the weakening immune system? His answer was “No” to all the questions, “live your life, eat everything you feel like….”

Yet he told me that if my CLL was the aggressive type I would have 2 years life expectancy. If not the aggressive type, then the average life expectancy was 10 years. “10 years! Wow, that’s an eternity…” I thought then.

CLL is a treacherous landscape. My life changed since that first consultation over 9 years ago. There is a lot going on under the surface of my life. I am stressed with each blood test, fearing the implacable advance of the disease. I attribute any sudden jump in the White Blood Cell count to what I did or did not do, working too long hours, worrying too much, skipping some meals, catching a cold, not sleeping enough, and so on. I have become an expert at adding and subtracting causes and consequences. Too much of this, too little of that.

None of it matters. CLL is totally random, without an identifiable thread of logic. It goes up, it usually goes up, sometimes it comes down, but links to anything you did or did not do remain mysterious.

As you descend the spiral, or CLL takes over your body, and your immune system becomes weaker, you catch infections easily. And so you become an expert on antibiotics. Which ones give you the strongest reactions, the worst after effects. These after effects then have to be treated, on and on in a vicious circle.

Another peculiarity of CLL is that doctors – since they do not know what causes CLL and how to cure it - hardly ever coincide in their diagnosis and recommendations. I was devastated when my White Blood Cell count reached 50K – normal is 5K -- and the hematologist wanted me to start massive chemo. I looked at the world around me and I was no longer part of its normalcy. So with a preservation instinct that has saved me several times, I started researching and learned about Dr. Hamblin and his new genetic tests for identifying different types of CLL. I flew to the UK, and after a number of tests, he told me that my genetic make-up indicated it would be wrong to start chemo, that I had a benign and slow moving form of CLL and that I probably had a few years before chemotherapy would be needed. In fact, chemotherapy could cause the genes to mutate to the more aggressive form of CLL. He saved my life.

However, there were new chapters to be written in my life with CLL.
To be continued.