Living with Lucy Part 1

By Linda Gainey Smock

Lucy is a mean girl.

Oh, I know, not all girls named Lucy are mean. In fact, I have a friend named Lucy who is one of the sweetest, nicest people I know.

Still, the girl named Lucy that lives with me is a mean girl. What’s more, I didn’t even invite her to live with me. She just gradually moved in and has never left. I’ve tried to kick her out, but to no avail! I even tried killing her with kindness, but that didn’t work either.

No fun way to live

What makes her so mean, you ask? Well, she robs me. Yes, steals from me! I’ve tried hard to control her, but she keeps grabbing things I need and hiding them so I can’t find them. What’s more, she could not care less how I feel. She does whatever she can to make me feel bad. We fight all the time, and you can see the black and blue marks that she leaves on me. I don’t think I have ever left a mark on her. She’s too tough. Mean, I tell you, mean!

Living with Lucy is not a fun way to live, but I make the best of it. More on that later, but right now, let me introduce you to Lucy.

Lucy leukemia

Friend, meet Lucy Leukemia. She lives inside my body and has made herself a part of my blood and lymph system. I can’t filter her out. Currently, I’m using targeted therapy pills (chemo) to partially control her. She’s part of a big family of blood cancers. The most common of all Leukemias is Chronic Lymphoma/Leukemia.

Lucy is similar, a non-identical twin. She’s a Small Cell Lymphoma/Leukemia. Both are slow-growing blood cancers, and about 90% of the people who get them never need treatment.

There are several other kinds of leukemias, but generally, if it is described as Acute, it’s a fast grower. If its name includes Chronic, it’s slow-growing cancer.

A cancer of the immune system

So, let’s talk about the one that I must live with, the one I call Lucy Leukemia. She’s a mean girl like I told you before. Thankfully, she’s not as mean as some of her cousins, however. Those Acute cousins are the meanest. They are downright cruel some of the time.

The simplest way to describe Lucy is a cancer of the immune system. She affects the blood cells that fight infections, known by hematologists as the B-cells. This is true of leukemia that lives with me, Small Cell Lymphoma/Leukemia, and the more common non-identical twin, Chronic Lymphoma/Leukemia. The difference is where they are located in the body. With Small cells, the cancer cells are mainly in the lymph nodes. In the Chronic, most of the cancer cells are in the blood and bone marrow.

Lucy was affecting my nerves

When did she move in with me? I don’t really know. About 2012, I became aware of problems with my feet including peripheral neuropathy, and I know now that was likely because Lucy was affecting my nerves. In about 2013, I started having GI problems that were probably caused by her manipulating my blood cells to work incorrectly. In 2015, a friend noticed I had a swollen lymph node. I was checked out and had a biopsy of that lymph node at the base of my skull. I just thought it was going to be nothing, swollen because of a sinus infection, or perhaps protruding a little because I had purposefully lost some weight. But the surgeon walked into the room and said, “Well, this didn’t turn out the way we expected it to.” That was a big hint that the “C” word was going to be involved! He told me that if I had to have cancer, it was the best type to have because 90% of the people with it never needed treatment.

Read Part 2 here!