Quality Of Life?

I have been a leukemia patient since 2011. I had lost quite a bit of weight, and stomach issues only made it worse. Dehydration and a trip to the urgent care ward (known in the US as the emergency room) led to IV medication. My first line of treatment was not tolerable. After three months, a second line of treatment was recommended. I gratefully accepted a change.

Failing my first and second lines of treatment

The second line of treatment led to tingling in the feet and hands. Actually, it felt more like fire ants crawling and biting. Nighttime could be the worst as there was nothing to take my mind off the discomfort. My urgent care center relayed information to my doctor. I was prescribed gabapentin, and my oncologist agreed to switch treatments again.

The third line of treatment led to infections. Here, there, and everywhere from stem to stern. There were mouth sores, hot flashes, and cold chills. The rashes were the worst. Itchy, red, and raised, sensitive to the touch, and spreading across my chest, up my neck, and into my hairline. I visited my urgent care center. A biopsy was taken. The results showed that I had an allergy to the treatment. I wasn’t sure how to respond.

Switching treatments again

Was there another treatment option for me?

The ER doc was not impressed with the way things were going. He decided to step out of the room, and he made a call to my oncologist. Just outside the door I could hear him talking to my oncologist on his cell phone. I heard him say, “What about quality of life?"

I thought that was a good question.

My oncologist never asked about quality of life

I have to admit that my oncologist had never really asked about my quality of life. Sure he had asked how I was doing, and how my symptoms were managing, but he never really talked about what quality of life I was having. I never really considered it. The urgent care doctor had given me something to think about.

It’s a strange question when we pose it to ourselves, don’t you think? I mean, it’s all relative! What one person can endure may seem impossible to another person. What one person can give up, change, rearrange and live-with may seem out of the question for someone else. Truth is, it’s a good question to ask ourselves when we battle a blood-cancer, I think.

What can I endure and why?

In the examination room I decided that these infected rashes, sores, hot flashes and cold chills had brought me to a situation I could no longer live with. Things were piling-up and affecting my sleep, my eating habits, my attention span, and my ability to relate to others. How much antibiotics, antifungals, and antivirals can one person have to take before looking for options again?

When the urgent care doc came back in the examination room I had my mind made up. I agreed to change treatment again. He relayed this information back to my oncologist, and a new treatment regimen started. The urgent care doc gave me advice on how to speak up before things got too severe. I really needed that advice.

Learning to speak up

I felt empowered. I finally realized that my point of view mattered. It was up to me how much I was willing to deal with. I felt like my quality of life was now under consideration. I didn’t necessarily need the support of another physician in order to meet my own needs.

Who knew?!

Most of the time I just feel grateful to have a capable medical professional assessing me. I couldn’t imagine complaining about quality of life. It never, ever crossed my mind.

Don't let things go

Too often I let things go. I did my best, until my best wasn’t good enough. Doing things that way led me back to the urgent care ward again and again. The urgent care doc made a good point.

Today I am on my fourth treatment treatment regime. We’ll see how things go. I have some good advice to fall back on.

What do you think about life and its quality? With change comes risk…or does it? Let me know in the comments below.

Thanks so much for reading.