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.


  1. Celeste, your paints are simply beautiful and I love the way you write. I have added a link to your blog on mine. So good to have the opportunity to know you.


  2. When I read this earlier, I didn't that you had figured out how to put the area for comments. Great post! You have captured some of the emotional aspect of this disease that we experience. I also learned even more about you. I didn't realize our Siamese twin, CLL, was female! HA! As I told you before, you paint beautiful oil paintings and beautiful word pictures. I look forward to part 2.

  3. Hi Celeste Maia,

    Like CLL Primary Progressive MS is something the experts, the doctors can't say anything as they still do not know what caauses AMS they date not give a prognosis as to what I can expect next.

    I am an embarassment to them, all those years of training to have to say ...nothing.

    For the Pharmapheutical Companies people with PPMS are of no interest there is no exisiting drug regime for us.

    Shame there is only research into drugs that will slow down the progress of the disease and not a cure.

    Wonder if this is also true of CLL?

    Have a good Sunday.

  4. Dearest Celeste,
    Now that I have finally figured out how to comment on this magnificent blog, with its powerful images in paintings and words, I must add my enthusiasm for this blog, and my appreciation not only of wonderful Dr Hamblin, but of your amazing intuition. You are so much more powerful and strong than the CLL!!!
    And on this page you have two glorious paintings of Mateus! Also appreciating the remarkable comments of your readers!
    What a gift!!!
    All my love,

  5. You are a strong and inspiring woman, Celeste!
    You are definitely special, just like my friend Anna and my maple tree

    I wish you the best!

  6. Thank you for this lovely post. My 68 year old father has CLL and was in his "watch and wait" at the beginning of his 2005 diagnosis. He is now undergoing his 3rd round of chemo this month and it is taking it's toll on his immune system. He is in the hospital fighting an infection they cannot figure out. He has had numerous blood transfusions. The doc says he is not sure what to do about his chemo now...says he is thinking it over. (?) Not sure what to think, but it is comforting to see such a strong woman sharing her story and inspiring those who can relate. You are an amazing artist and writer. Thank you and if anyone has anything to share with me, I am open. Bless you all...
    Robin from Texas

  7. Robin, I tried to email you, dont know if you got it or not. My private email is If you write to me privately I will be able to answer about your father and living with CLL. I have a long experience with it and the decisions I made to try and defeat it.