Handling Life with Leukemia and Fatigue

I recently saw a video where a woman declared that she was leaving her husband of many years. What was the problem? The husband had cancer, and according to her, “His personality changed.”

Not to be mean, but well, duh.

Yes, everything changes after diagnosis

After I heard that, I started to think about the before chronic myeloid leukemia (CML) part of my life versus how I am now living with it. In October 2024, it will be 10 years. That is a long time.

I would like to say I have adjusted well to the “new normal,” which is not so new anymore, obviously.

People tell me all the time that I am handling my life well with leukemia.

Several years ago, my primary doctor said that I was coping with my blood cancer “very gracefully.”

But what does that mean?

What does coping gracefully mean?

To be fair, my doctor is not in my apartment with me when I’m stumbling around weak, half asleep, nauseous, or out of sorts.

She is not with me when I am crying uncontrollably or feeling sorry for myself or angry.

Most of all, when I say I am “fatigued,” to anyone, including doctors, they just do not get it.

“Everyone gets tired,” I am told. “It is just a way of life with work and your other responsibilities to carry out.”

That is just it. It is difficult enough to try to work and get other life things done. But it is nearly impossible to accomplish when fatigue from blood cancer sets in.

Fatigue is frustrating

Fatigue makes for some very bad, non-productive and frustrating days.

I always prided myself on being very organized, meticulous, and accomplished.

I am not saying that to be conceited. On the contrary, if anything, it took tons of hard work and juggling to succeed at anything. As an adult, I’ve always worked at least two jobs to get by.

But, like that lady’s husband, my personality has changed. Everything has changed.

I do not think there is a point in denying it.

For me, one of the most difficult parts of having blood cancer is the fatigue.

I think it contributes to me not being the same person I was before being diagnosed.

On bad fatigue days, it is hard for others to fathom how it gets so severe that I have to stop everything I am doing to go back to bed. I can only describe it as feeling like I’m going to pass out. It is debilitating.

Even outings take a toll

Therefore, for me now, going out very much even to do the smallest errands takes a toll.

I know if I go out for an hour or so, just to a gas station or a drive-thru at the bank or pharmacy, I am going to be exhausted when I get home. In fact, it hurts and is worse the next day.

When planning these rare excursions, I always map them out, keeping in mind I likely will not be able to function well the next day.

I must think about what is occurring "the day after," and arrange down-time in case I need it.

That may explain why I go out so infrequently now. It screws up the rest of the week.

The old days

Once, I thought nothing of driving around, taking myself out to lunch either alone or with friends and doing other things I enjoy like movies, traveling, or going to concerts.

Granted, the last few years have changed things for a lot of people. I am not unique.

However, fatigue combined with a litany of other physical problems (more on that another time) have curtailed the old way of doing things.

Even pushing around a walker all the time gets very tiring.

It stops me from taking things for granted the way I did before.

A message to others

So please don’t get angry if people with blood cancer have to say "no" to things, must cancel at the last minute, or otherwise seem like our “personalities have changed.”

I think a lack of energy and stamina would change anyone’s demeanor. Right?

Personally, I recognize that I have become less "fun," more serious and self-reflective than before.

Leukemia has a way of doing that to a person.

Living with CML can weigh you down because of the "chronic," nature of it. Dare I say it can kick butt?

While I try to keep my spirits up whenever possible, when the fatigue and other effects kick in, there are days I have to surrender to it.

That goes against my nature and hurts and annoys me.

I would hope that unlike that woman in the video, most people would understand and still care.