Cancer Survivor Takes On the 'Inconsiderate' Health Care System in New Book

Heal, Winter 2017, Volume 1, Issue 1

I’m lying there with the machines swirling around me, staring up at a faux light, and literally, it was as if the clouds started moving. And I thought ‘Would be great to have a lemonade right now.’” - Apryl Allen

COURTESY OF APRYL ALLEN

When Apryl Allen was diagnosed with breast cancer 11 years after her mother died from the disease, she thought her biggest challenge would be facing the cancer itself. However, her battle with the health care system proved to be the most frustrating.

As she sat in waiting rooms and processed her cancer diagnosis at home, Allen read several books — eight to be exact — none of which helped her to find that piece of the story. No one was talking about any difficulties that they might have had with the system, and that is where her frustration grew.

Tell me a little bit about the book, "A Tango with Cancer" and why you decided to write it.

In a quest to find compassion among medical industry professionals, she decided to write about what no one else would. Allen details her reasons for writing “A Tango with Cancer: My Perilous Dance with Healthcare & Healing,” how music played a role, and why laughter is something we all need to embrace in an interview with Heal®Allen: I was expecting to fight cancer, and was prepared to go through whatever I needed to physically beat it. What I wasn’t expecting was how our health care system treats us as patients; you’re no longer a person, but a commodity.

The experience was heartbreaking, not only based on how I was treated, but witnessing other people struggle through a system who are older or don’t have someone to help them. I found most health care professionals and their staff to be inconsiderate, no compassion whatsoever and unable to see the person in the patient.

I don’t know if it’s because medical professionals are tainted by everything they go through daily or what it is. Prior to my health misfortune, I rarely went to the doctor, but if I did and had a lengthy waiting period or an unpleasant experience with the doctor or staff, I’d just chalk it up to a bad day on their part. But to have it happen over and over, with waiting periods of 40 minutes to an hour, every time you see a particular doctor — don’t get me started on the waiting periods to obtain test results — it’s extremely stressful.

“A Tango” isn’t about my “journey” with cancer. As a matter of fact, I detest that word; it’s anything but a journey. Instead, it’s about what I wish I could have read: What was the experience going to be like? Were the feelings I was experiencing normal or was I out of my mind? Every book I read never touched on these emotions, and, in most cases, the author’s experience was what I yearned for — primarily because they were someone of importance or were well connected — being ushered through the system in a timely fashion (or more quickly) and somehow rising above the anxiety with an attitude that was verging on saintly.

In the book, you named each chapter after a song. Can you expand upon why you did this and what the value of music is during a battle with cancer?

If I could offer a piece of advice it would be to make sure you have a great relationship with your primary health care practitioner. I had to be my own advocate. To have had a medical professional who knew my medical history by my side willing to listen and help with decisions would have been a godsend. There was no doctor that stood up and said, “I understand this terminology and can I help you with this” or “Let me help you understand what type of specialist you require.” More times than not I was told, “I’ll let you Google it.” You’re basically thrown to the wind to figure it out on your own.I’m a musician. I’ve written a couple of albums. Music is a big part of my life. One thing that I found interesting during this period, before my surgery, before appointments that I had, was that if I listened to music while I was getting ready, my anxiety would lessen and, in some instances, melted away. If I didn’t listen to music before certain appointments, I’d be a train wreck.

It didn’t have to be a particular kind of music; it was what I enjoyed listening to at the moment. It ultimately took me out of the “Oh my gosh, what about all the ‘should’ve, could’ve, would’ve’ from the past and ‘what ifs’ from the fear of the unknown in the future.” It helped me stay calm in the present.

The day I was diagnosed, I had put on an album by Amos Lee that a friend had given me that I hadn’t really listened to before. The first song on the album is called “Keep It Loose, Keep It Tight.” In the song, he talks about how he’s in love with a girl who’s in love with the world, and he can’t help but follow. And that just resonated with me because of what I was in the middle of and seeing my illness through my husband’s eyes. For four months, that is the song I listened to.

What advice do you have for healing? What strategies did you use that were effective in your life?

As for naming of the chapters, with each chapter that I wrote, I asked myself, “Where was I? What did I feel like at that moment?” and found a song that resonated with that period.The best advice I was given during this period was from my 92-year-old aunt who called me a week after my surgery. She listened to me sob a bit and then she told me I needed to get the attitude back that I had before the surgery, and she ended with, “Happiness is the best medicine when you’re sick.”

Another thing is remembering to stay in the moment. Don’t look at your past and ask, “Why did I eat the French fries? Why did I allow myself to put on weight?” No one can say definitively what causes cancer, so you can’t beat yourself up. By that same token, don’t live in the future of fear. We have to live in the moment. A huge help here is meditating. For some individuals, it’s as simple as taking a walk. Ultimately, the question you should ask yourself is, “What will make me happy in this very moment?” All things aside, of course.

Sometimes humor can help ease a difficult situation. Do you remember any funny stories along your way?

Not only is exercise important, but lymphatic massages. I just started doing these massages, and personally, for me, I breathe better, I have more energy and my sex drive went way up.You get to the point where sometimes it is just so depressing, but then you have to just look at it in the face and start laughing. You have to laugh or you will definitely lose it.

One instance was when I was in for my radiation treatment and I’m lying there with the machines swirling around me, staring up at a faux light, and literally, it was as if the clouds started moving. And I thought “Would be great to have a lemonade right now.” You just make jokes of things like this. You have to. I reached for laughter. I love laughter