How Do You Cope During Blood Cancer Setbacks?

I’ve shut myself away for the last several weeks and that can be a good thing—or not.

A turn in my CML journey

My eight-year journey with chronic myeloid leukemia (CML) took a turn last year for a number of reasons.

First, I was taken off the TKI, (tyrosine kinase inhibitors, a targeted therapy) that was keeping my bloodwork stable in order to investigate another medical issue.

When you are not like most people

At the time, my CML specialist doctor told me most people can bounce right back to “undetectable,” leukemia levels once the treatment is restarted.

That’s what happens, for most people. Apparently, I’m not one of those people.

I lost my “response,” which is the best you can hope for with CML treatment. There is no cure or so-called remission as most people know it at this time.

Would I bounce back?

But still, the hematologist/oncologist and I waited to see if things would improve and if, in fact, I bounced back.

Unfortunately, in the middle of all this—I had to have emergency gall bladder removal surgery. It came out of the blue without prior symptoms—but was a pretty scary situation that caused a lot of health setbacks.

Significantly, the surgery meant I was taken off the TKI again to let my stomach recover for a while.

That’s when the situation worsened.

The ultimate crash

It all came crashing down around the holidays.

The levels of leukemia in my blood spiked tenfold. I have not been in this situation since 2014 like at the time of my diagnosis.

Trying a new TKI treatment

After a couple of discussions with the doctor, I agreed the best course of action would be to switch treatment to a TKI that was newly approved by the FDA. I have failed two TKIs now and this switch is the usual course of action.

My doctor was involved with clinical trials of this drug and said that he had patients who had excellent responses to it, perhaps with fewer side effects. Or, at least that is what happened with most people.

There’s that “most people” thing again. But drastic times call for drastic measures.

My subsequent visit for bloodwork barely two weeks after having started the new drug had disappointing results. Although some of my regular bloodwork improved, my leukemia levels shot up even higher.

Waiting and hoping for better results

I told myself it was too soon for the new treatment to “kick in,” and to wait and see what happens as time goes along. That’s the mode I’m currently in. My next bloodwork is two days from now so fingers crossed.

Meanwhile, the thing about the lesser side effects is not holding true for me. I keep telling people this treatment is really knocking me off my feet with issues like fatigue that makes it hard to function, insomnia, pain, vision changes, nausea, weakness, etc. You get the picture.

Side effects cause me to pull away for a while

Hence, my disappearing act as of late. I became completely overwhelmed with all the changes going on plus a hectic full-time work schedule and numerous other physical ailments.

I shut down and decided to disappear. I had several days where I didn't feel up to talking to anyone or even trying to deal with one more difficult thing.

After some time, I had to give myself a good talking to. This CML “journey,” has had peaks and valleys before as I head into eight and a half years as a patient. And though it is sometimes easier to vanish or shut down, gradually, I started feeling stronger and getting that desire to get my mojo back.

Returning to the fight

Anyone with blood cancer knows that you can’t survive by giving up. I used to dislike the term “warrior,” but heck, if this is a battle what else are we?

Is that my armor I see before me?

When the going gets tough, how do you cope? Do you tend to buckle down and get tougher or do you prefer to go inward? If it is the latter, how do you help yourself rejoin the world? Please let me know in the comments below.

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