Put Yourself First - It's Time

Last updated: September 2021

Once a caregiver, always a caregiver. Right? Now that we are blood cancer patients, we may or may not have someone looking after us – a spouse, child, friend, etc.

For some of us, that responsibility falls to ourselves. And, it is not always easy to take care of yourself with as much fervor or devotion as you would someone else.

A caregiver through and through

Here’s a bit of my story. In addition to working full-time, my primary role in life for many years was to care for my mother, who had a plethora of health problems including heart failure and COPD.

Preparing meals, organizing medications, driving and accompanying her to doctor’s appointments (often several in one week), and acting as her companion was my reality and way of life for nearly two decades.

I built up arm muscles pushing her wheelchair around.

I was a caregiver through and through. Coming out of the anesthesia of a hysterectomy that had numerous complications, my first words, (to her) were: “Did you take your pills?”

Similarly, I spent my second serious hospitalization and surgery for a stomach blockage trying to tend to her needs over the phone and give instructions to siblings, thrust into the caregiver role.

There were many phone calls. Many—most especially incoming. I remember a nurse taking my phone away when I was getting worked up, my blood pressure spiking to stroke levels because I was trying to get an important point across.

If I sound like I’m complaining, I’m not. Her passing eight years ago left an enormous void in my life, one that hasn’t been filled yet and I suspect never will. I have no regrets about being a caregiver. It made our relationship closer than I can ever accurately describe.

So, what does any of this have to do with blood cancer, you may ask?

Who will be my caregiver?

Two years after her death, I was diagnosed with chronic myeloid leukemia and so the journey began. I live approximately two hours from family and several friends.

Who is going to remind me to take my Tyrosine-kinase inhibitor, Sprycel, every night to try to send my BCR/ABL cells into hiding? Who is going to keep track of other medications, taking them at the proper times in the correct amounts?

Who is going to cart me back and forth and sideways to the CML specialist, primary doctor, and a plethora of other specialists to deal with side effects (dermatology, allergy/lung, gastro, eye issues, etc.)?

The woman in the mirror, that’s who.

And that’s okay. It’s time for all of us to put ourselves first and do what has to be done. If that means offending and annoying people, so be it.

Here are a few tips on looking out for #1 that I’ve learned

Don’t say yes to things that you are physically not able to handle. This one has taken me so long to figure out that it is embarrassing. If others think that you are being lazy, selfish, or overly dramatic, for not traveling long distances, staying up until midnight, or participating in some event, let them. You know what your body and mind can handle. Stop being a people pleaser to your own detriment.

Don’t bite off more than you can chew. It’s a cliché but how many times have you taken on a multitude of tasks that end up exhausting and overwhelming you? Try to judge what is reasonable to handle and what is not. You are not the same as you were pre-blood cancer.

Know when to take a break. Take a nap. Go outside and breathe for a few minutes. There’s no point in trying to be Wonder Woman or Superman when you are fighting a horrific battle that needs a lot of your energy.

Take some time to do something that you love. Boy, I need to work on this one. Is there a hobby you had when you were younger that you dropped? Can you pick it up again—be it painting, reading, knitting, scrapbooking, etc. ? You get the idea. You can’t think about your condition 24/7, so distractions can be good (and fun!)

Finally, you don’t need me to say to try to get enough rest, eat well, exercise, and keep in contact with your medical team if you need them to help you.

Put yourself first. On my social media, I’ve had a quote there since long before I got sick. It’s a Journey lyric: “Be good to yourself.”

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