Me and my Leukemia, BFFs Forever

By Nancy O’Brien Simpson – Patient

The year was 2005, and I was a psychotherapist who had the world by the tail. A gorgeous family, an amazing home, a stellar career, fun friends. And, I also had a lump on my neck. Then I asked my PC about it she said, doesn’t seem like something to worry about. Wrong.

Feeling great, my daughter was concerned about the lump and had me go to her doctor who ordered an MRI just to make Erin, my daughter, feel better. I knew it was nothing, I was in great health and 53. The results came back suspicious for lymphoma or reactive node disease.

What’s reactive node disease I asked the PC? It’s when the nodes get wonky she told me. Well, that’s what I have, a wonky node. Wrong.

I had a biopsy done which revealed chronic lymphocytic leukemia (CLL). The oncologist, who lacked bedside manners, proudly proclaimed, “Well, you have one of the truly incurable cancers.” The words hit me like a mac truck. INCURABLE CANCER. He said they could beat it back with chemo, but it would always come back.

“Am I going to die? Just tell me how long I have.” I can’t remember what he said because the “incurable cancer, leukemia”, was all that I could think about.

My life changed in that moment with those words. I was going to die. In an instant my world went from vibrant technicolor to gray. I went from being a human being to a zombie. I was the walking dead. Everyone else had a life and a future, I was dead. My gorgeous home became a mausoleum. Things I used to love like purses, shoes, design stores and food lost all meaning to me. I went through the motions of life. Dead girl walking.

Three months went by. During those months I came to believe an army of vicious worms were day by day devouring my body. There was nothing I could do to stop them. Slowly, insidiously, they were growing. One day they would have overtaken me enough to get chemo, and then debilitation, and then death.

I was marking time. I would wake up in the night and forget what had happened and be a normal girl, and then I would remember, and it would suck the air out of me. I lived alone so the battle in my head was heightened.

This went on for about three months and then one day I was in church and the pastor said, “There is no valley, no divorce, no getting fired, no disease, no financial woe, nothing, nothing, where the face of God is not.”

Apart from me, my own understanding, my own strength, a miracle of great grace befell me and on the face of very vicious worm, in the army of death, was the face of God. Suddenly I was not filled with death but with grace. I looked around and the room was not gray, it was bright with light. I was not dying I was living, and the face of God was everywhere, on every leukemic cell.

Soon after that, I began to talk to my leukemia. Jesus says to forgive your enemies. And, leukemia was an enemy. So I said to my leukemia, “I forgive you, I don’t know if I can love you yet, but I forgive you.” And, my leukemia spoke to me.

It said, “Nancy, we love you. We do not mean to harm you, but we have lost our way. We do not know how to stop dividing. We feel awful and we want to be well just like you do. If you die we die. Let’s work together to get both of us well. Let’s do what we can to be healthy and whole.”

I knew this was truth. So many people wage war with their cancer instead of loving it. What happens when we wage war? Negative energy. Fighting. Misery. Hate. Not good things.

When we understand that our cancer feels horrible about not knowing how to stop dividing and hurting us, things change. Especially when we know it wants us to get well more than anything. We can work with our cancer to get well and not fight against it. Love is more powerful than hate. Never forget that. And, this is true when it comes to our cancer. Love is more powerful than hate.

My cancer and I began to work together. I would tell it I loved it and that today we would work together for healing. We would exercise together. We would eat healthy together. We would think positive thoughts together. We became over time BFFs.

My cancer is not only my BFF, but my best mentor in life. It has taught me so much about courage and faith. It has taught me I was stronger than I could ever imagine. It has shown me the love and the compassion of others.

So, we lived together as BFFs for many years. At some point the cancer ended up in my eyes which is a total rarity in CLL and I was so impaired I had to quit working. I was very organic and alternative healthish and had resisted chemo for so long. However, when it got in my eyes and when my neutrophils were below 500 for a year, the doctor told me I had to say “uncle” …and right now.

The chemo was a single agent monoclonal antibody, Rituxan. I had insisted on starting out “little”. Well, the little ole Rituxan was a miracle and I got my eyesight back. I had a five hour drip every three months for many years. My bone marrow was still 80% impacted with leukemic cells. But I was able to do just fine.

A couple of years ago the oncologist said she wanted to do another bone marrow biopsy and we talked about what we would do if it was bad. She said that it would probably not be good since it had been so high a few years ago and would only inch up. I was okay with bone marrow failure, as weird as that seems. I was 64 and had led an awesome life. I was not a candidate for a bone marrow transplant and she said we could discuss options when we knew more.

So, we did the bone marrow biopsy and it is all okay. Whatever the outcome, I am ready. I just had a feeling it was not going to be good. I went for the results and the oncologist comes in and she is crying. I say, “No, no, please do not do that! I have had a great life. I am fine.” She said, “It is gone! This is a true medical miracle. It does not just leave the bone marrow with Rituxan. Not totally gone. This is a true miracle!”

I could not really grasp it. I was not jumping up and down with joy, I was in utter shock, probably clinical shock. It only slowly came upon me that it was gone, and that I had a future without so much fear. It was amazing joy unspeakable day by day.

When I look back on it, I think that my loving my BFF, my leukemia was what did it. I think my leukemia loved me so much that it worked extra hard to go away. I will always honor my friend leukemia for what it taught me and all the trials and challenges we did together. Remember love is stronger than hate, even with your leukemia.

Blessings to all.


Nancy O’Brien Simpson was a psychotherapist in forensic psychology. She is currently a writer for the Russian publication, Pravda, and has a weekly column on international politics. She lives in Cincinnati, Ohio.

Originally published in The CLL Tribune Q1 2017.

 

 

Information provided by CLL Society.