Coping With CML's Bad Days and Depression
Last updated: April 2023
Rainbows, puppies, and unicorns are in short supply at the moment.
Sorry, my natural sarcasm is at the forefront. Today is day three of non-stop nausea and annoying pain that seems to move from my back to my hip to my legs. I’m sick of it.
If you’ve come to read about bravery, a smiling, positive attitude, and receive affirmations of love and light, this is not the place.
If, on the other hand, you want to hear about the 'bad days' people with blood cancer sometimes face, read on.
It’s not always this bad
In fact, I am unfortunately more used to living with chronic myeloid leukemia (CML). It has been six years. It feels like forever.
But you don’t want to hear my 'woe is me' complaints, do you?
To be real, I can’t do nearly as much as I used to without getting worn out. That brings me down. I’m still managing to work full-time (telecommuting) and complete the basics. But a lot of things go by the wayside – over and over again.
Take spring cleaning, for example. It extended into summer and now, autumn. Maybe, just maybe, it will get done in 2021. It’s slow going with having to sit down every few minutes while vacuuming because the pushing motion causes so much fatigue.
And the dusting, polishing? Maybe I should wait and use cobwebs as Halloween decorations. Only kidding! It’s not that bad, yet.
On bad days, taking a shower and getting dressed does me in. I’m sure I’m not the only one. When it is finally accomplished, I want to take a nap. That pisses me off. It reminds me of this 'new' normal that I never asked for and do not want to crumble into.
Bad days make my depression kick in
I call it my dark hole of doom and gloom. I have a friend that I call when I feel like I’m on the precipice of falling. “Don’t do it, Susan,” she tells me. This particular friend happens to be one of the funniest people I know and nine times out of 10, I will be laughing hysterically by the end of the call.
To be fair, I can’t blame my depression entirely on CML but it doesn’t help. I was diagnosed with depression and generalized anxiety disorder a couple of years before I found out I had CML. I was coping with a lot of other health issues and my mother’s death and sought help from a grief counselor.
My counselor specialized in life transitions so when I told her about my leukemia she said that was another transition to face. After a few more months of visits, however, not only did my insurance run out but the travel to appointments (an hour away) became too much for me to handle. I was constantly sick and dealing with side effects from the first drug I was on called Gleevec (imatinib).
The realities of living with a terminal illness
My new primary care doctor suggested that I see a shrink located in the same building around this time. “Sure,” I said. I was kind of a mess at that point, to be honest, sick 24/7, coping with the start of a huge weight gain, and even walking was a chore. The shrink ascertained that I was indeed depressed and anxious after I took those psychological survey tests.
She asked me what was bothering me so I told her about my leukemia, my grief, my frustration over feeling sick and gaining weight, and all the other realities of living with a terminal illness. “Man, that’s terrible,” she said. “No wonder you are depressed. I’d be depressed too.”
On my second visit, when I was facing a possible second cancer (false alarm!), the shrink advised me to go home and drink a bottle of wine and eat chocolate.
I remember telling her that I couldn’t drink because of the tyrosine kinase inhibitor (TKI) I was taking for treatment and that chocolate gave me migraines. Besides, it would not help my weight situation or my mind. “Oh no, that stinks,” she told me, shaking her sympathetically. “I’m so sorry.” Yeah, bye.
So now, several years out, when I’m having a bad day, I do one of a few things:
- Phone a friend.
- Let myself cry but only for a little while.
- Get some extra rest.
- Talk myself out of it. (“Pick yourself up by your bootstraps” is an expression I don’t like but essentially the gist of it).
- Write about it.
Just did the fifth and the dark cloud faded. Is that a rainbow I see?
How do you feel about your support system?