Energy Do's and Don'ts for Blood Cancer Patients (Part 2)
Living with chronic myeloid leukemia is difficult. I am not in the mood to sugarcoat it today. Anyone with blood cancer will tell you that fatigue is a daily reality as are side effects from treatments like tyrosine kinase inhibitors (TKIs) and the disease itself.
Because conserving energy is something I think about all of the time, I’ve highlighted some suggestions on where people with blood cancer can save their energy in Part 1. But how should they expend it? Here are some Do’s to consider:
Do: Listen to your body’s warning signs
When you have exerted too much energy or simply need to stop for a few minutes and take a break, do it! I spent years trying to fight off God awful fatigue and sore muscles and for what? Was it to keep up a façade of business as usual? I work full-time and luckily can accomplish most of it remotely. If you can, factor some breaks into your day and take a nap when you are just too tired to carry on.
Do: Educate yourself about your condition, but don't overdo it
It’s a tricky balance. By all means, read legitimate websites like this one and do research but if you read everything that is out there about leukemia, for example, you will crawl into a dark hole and wait to die. Been there, done that. It’s not necessary. Some of the information out there is outdated and/or just plain wrong. Beware.
Do: Ask your medical team questions
And ask and ask some more! If your doctor will not listen to you or answer your concerns about your condition, it is time to consider a change. I never heard of people 'firing' a doctor until I was diagnosed with CML. If he/she is not teaching you how to live with side effects, revealing test results openly and honestly, and discussing your prognosis, you deserve better.
Do: Try to be physically active when possible
Here’s another catch-22. When your body is screaming with pain and it’s exhausting to do things like take a shower or even get out of bed, the last thing on your mind is exercise. However, a lot of what you hear is true. I know it is not easy. I’m carrying around and still trying to adjust to a huge weight gain. But every Saturday, I drag myself to aquatic therapy (treadmill in water, kind of cool) for an hour. On two other days per week, I am working with a trainer on getting some of my arm and leg strength back. I just started. I’m sore as hell but when I leave that room drenched in sweat and out of breath, I guarantee I feel happier than I have in months. I also know my limits and when to tell the trainer to 'slow his roll and cool his jets.' (I’m dating myself!)
Do: Seek support
Whether you get that support from family, friends, or a professional counselor does not matter. What matters is that you don’t try to be a hero or heroine and go at it alone. It is not always possible to have loving, supportive, helpful people in your life. I get it. That’s why online forums and advocacy groups are other possibilities. I know when I read about bone pain and weird rashes and unexpected emergency room visits online it helps me feel like I’m not alone. Gather your troops for this battle. Make no mistake about it—it is more than a battle, it’s a full-out war.
Do: Take the time to be your own advocate
Find some time to do things you enjoy and look after yourself. Remember: You matter.
Have you taken our Blood Cancer In America Survey yet?