Remove the Mask: Talking About Your Blood Cancer

It's okay not to always be strong.

It's fine to let others and, more importantly, yourself, know that living with blood cancer takes a toll on the patient--mind, body, and soul.

Putting up a brave front

By now, those who actually know me realize I've been putting on a brave front for nine years.

In 2014, I was diagnosed with a rare type of blood cancer called chronic myeloid leukemia (CML). The news was a shock, even though I knew something was off with me for quite some time before.

In those early months, part of me was in denial. My CML specialist told me a typical patient for this type of leukemia is a man over age 75 who probably avoided doctors most of his life.

I was 49 at the time and saw doctors regularly for checkups, blood work, physicals, etc.

So, I wondered, “How did I end up in this mess?”

Pretending everything is normal

One of my jobs at the time was as a reporter for a large city daily newspaper. The term “roving reporter” fit me to a “T.” I was constantly called upon to travel to neighboring towns to interview people for stories.

I remember prior to going on these assignments, I would always have to psych myself up using the mantra: “Pretend like you are okay.”

I would repeat that statement several times even though I was not feeling well and often was weak, nauseous, achy and more.

But I’d slap on a happy persona and carry on like life was a bowl of cherries.

As soon as the interviews were done, I would rush home and usually collapse from the fatigue and otherwise feel miserable.

Rinse and repeat

When people asked me how I was feeling, I always answered, “Good, how are you?”

Again with the mask.

Those I worked with had no idea what was going on until a few years later when I had to take time off because of mobility issues. Most said they never would have guessed. I guess I should have pursued acting as a career.

Why hold back the truth?

The question is: Was it for my benefit to try to hold on to a semblance of normalcy or was it to spare other people for some reason? I think it may have been both.

Without a doubt, my condition has taken a significant turn for the worse the last two years. Now, I’ve been much more open about what is going on.

My treatment with my second TKI stopped working after seven years, following gall bladder surgery and time off treatment.

I am currently taking what my hematologist/oncologist calls a “salvage” drug.

It is fairly new (approved by the FDA in 2021) and used when the patient has failed two previous treatments.

At first, I was slow to see results. Fortunately, I am going in a better direction now. It’s not great or where I need to be, but it is something.

Let it out

My point is that it is okay to let on when things are rough. There is no shame in telling the truth. It is not creating drama or searching for pity. Far from it.

I would much rather be healthy than gain sympathy. I think everybody with blood cancer will agree.

Knowing what I know now, I would recommend new patients skip trying to put on a brave face all the time. If things truly are okay, then great. But if they are not, why not share that information with your inner circle? Why not admit to yourself that this is the “new normal” you are living and it often sucks?

Yes, it requires strength to face the challenges of a blood cancer diagnosis. And it is also brave to tell it like it is.

It reminds me of lyrics from a song by Styx, one of my favorite bands:

“The time has come at last…To throw away this mask.”