Living With Incurable Cancer: The Emotional Toll of Never Knowing What Comes Next

Small lymphocytic lymphoma is chronic and incurable. I have learned to live alongside it, never knowing what new problem will face me next. When I told my Mohs surgeon, “No offense, but I hope never to see you again,” he told me, “Unfortunately, you will. It comes with SLL.”

Great, I thought. That was encouraging. NOT!

But that was the truth. It did happen again.

And now, another new problem.

Living With Small Lymphocytic Lymphoma and a Compromised Immune System

I became extremely congested and went to my pulmonologist with a chronic cough. He requested a sputum test that came back with a diagnosis of “many Streptococcus pneumoniae.”

My oncologist was very concerned. Although I was up to date on my pneumonia vaccines, he ordered another one for me to get as soon as possible, followed by another four weeks later. One thing I do know is that I have such a compromised immune system that the last thing I need is to get pneumonia. He said my body seems to be colonizing the bacteria.

Again, Great, I thought. This is just what I needed now.

I should be getting used to this. For 17 years, every so often, something happens. Either my numbers were elevated and I needed treatment, or the lymphoma infiltrated my lacrimal glands, as it has done twice, and then my cheeks, causing me to need radiation three times.

Then, when I was not feeling well, I had a PET scan that showed swollen lymph nodes throughout my body. I needed to start Calquence (acalabrutinib) and remained on it for three years. The good news is that a little over a year ago, I was doing well enough to be taken off it—until it returns.

I am now being watched every three months, and thankfully, I am still doing well.

Now my newest problem is that I am colonizing the bacteria that causes pneumonia.

This one scares me a little more than the others.

I am already allergic to a few antibiotics. Until now, the only thing that seemed to help was Levaquin, and this week I am trying a new one—linezolid. I started not feeling well and was coughing up green sputum (sorry for the gross description), so it needed to be treated.

Now, don’t get me wrong. I am still telling myself that I need to have a positive attitude. Hopefully, this latest bout will be helped by the new antibiotic. But when I read that this antibiotic is one of the last defenses against tough bacteria, I must admit, this really scared me.

The Fear Behind Every New Cancer-Related Health Problem

I know I have to be optimistic, and I usually am. Sometimes I need to work to get there. But you know what? There is no option, and I know that.

This is probably going to be, unfortunately, a chronic problem now that I will face for the rest of my life. It means I will have to be more careful, especially during cold and flu season.

I was always careful, but recently I started to let my guard down. I began eating inside more restaurants, something I didn’t do at all, especially during COVID.

But you get lax when things are going smoothly.

And maybe that is the hardest emotional part of living with an incurable cancer. When I am feeling well, I want to believe I can simply live like everyone else. I want to be able to forget, even for a little while, that my immune system is compromised and that there may be another problem waiting around the corner.

This latest experience has reminded me that I can’t forget. I have to find that balance between being careful and actually living my life.

Finding Optimism While Living With Incurable Cancer

I am still going to choose optimism. But I also know now that being optimistic doesn’t mean I can’t be scared. It doesn’t mean I have to pretend that every new problem is no big deal.

Sometimes I need to acknowledge the fear, take a deep breath, listen to my doctors, and then keep moving forward.

I have been doing that for 17 years.

I will keep doing it—one new problem at a time.

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