It's That Time

Credit: Life Matters Newsletter

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On Monday, I went for my quarterly blood draw and received this whimsical bandage, fit for big and small kids alike.

My grandson is a dinosaur fan, so I texted the photo to his dad to share along with the message:

“Look, Mimi got a long-neck dinosaur bandage today at her doctor appointment!”

The little guy is three and a half and understands that we all visit the doctor when we’re sick, or it’s time for vaccines. Thankfully, he’s still young enough and doesn’t ask many questions. My condition is too complicated to try and explain, so if he asks, I’ll tell him I had to get a shot.

I was diagnosed in October 2022 with CLL (Chronic Lymphocytic Leukemia), which is a type of blood cancer. I was told at the time that it is an indolent (slow to develop) condition for which there is no cure. The good news is there are multiple treatments to manage it.

Leukemia is a cancer that starts in the blood-forming cells of the bone marrow. When one of these cells changes and becomes a leukemia cell, it no longer matures as it should and grows out of control. Often, it divides to make new cells faster than usual. They also don't die when they should, allowing them to build up in the bone marrow and crowd out normal cells.

At some point, leukemia cells leave the bone marrow and spill into the bloodstream, increasing the number of white blood cells in the blood. Once in the blood, they can spread to other organs, preventing other cells in the body from functioning normally.

Before 2022, I noticed a few enlarged lymph nodes, but I thought it was due to the psoriasis flare-ups I was having. The diagnosis came via my annual mammogram when they discovered a particularly big node in my armpit that had to be biopsied.

Imagine my surprise to get that news. The only symptom I had was the swelling nodes, but no pain or weight loss. I was shocked and scared, which describes anyone who receives a cancer diagnosis.

How could I be sick if I didn’t feel sick?

Fast-forward to Monday. Aside from the rising and falling of the nodes, the only symptom I’ve noticed over the past two years is decreased energy. This is expected and happens when the white blood cells crowd out the red ones. The red cells carry oxygen to every part of our bodies, so eventually, you become anemic, which is where I am now.

My doctor asked me at every visit if I was feeling fatigued. I replied that I wasn’t sure because I’d never been 60 before, and slowing down seemed natural.

Nevertheless, he said that the time has come, and treatment looks like four pills every morning. They’re called BTK inhibitors (Bruton's tyrosine kinase inhibitor), a class of drugs that treat cancers caused by defective B cells. They are also being used to treat autoimmune disorders.

I’m feeling many emotions right now. I had to speak with a company that handles coinsurance to get the meds financed (they’re VERY expensive.) Then, I spoke with the pharmacist about drug interactions, side effects, etc. It was a multi-step process that took a series of phone calls.

Courage is resistance to fear, mastery of fear—not absence of fear. ~Mark Twain

On one hand, I’m nervous about possible side effects and if the medicine doesn’t work. That would mean switching to another one of the treatments and going through the process again.

On the other hand, I’m told that most people tolerate this targeted therapy well, with only minor side effects, if any. The doctor assured me that I’d feel like a new person after running on 75% energy for so long, and my lymph nodes would shrink back to normal size.

I’m currently waiting for UPS to deliver the pills that I’ll take each morning. I plan to begin them on Friday, so I have four full days with no commitments, just in case I feel poorly.

For the most part, I’m grateful that it wasn’t an aggressive cancer that requires a more involved treatment plan.

But, occasionally, the question creeps in: “Why me?”

That’s a natural response, so I’m not beating myself up over it. Plus, I’m glad it’s not something worse that there is no treatment for.

I’ll write more about the various emotions I’ve dealt with these last few years, but for now, I’m focused on beginning this next phase.

This leads me to a BIG ask: I would be so grateful if you could send positive thoughts, prayers, vibes, or whatever you feel inclined to do. I’m hoping for only minor and temporary side effects (or none at all) and success with these four pills, which will define my days going forward.

When you read this, I’ll have four days under my belt and will let you know how it’s going.

Wish me luck!🤞🏼🍀 🧲 🙏

Thanks for reading Life Matters and being a friend and support system for my writing endeavors and life in general! ❤️