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Cancer Sucks

gloria
Gloria and her baby, Ruby.

My friend Gloria was diagnosed with stage 4 breast cancer in 2008. She has been through surgery, chemo, and radiation, and continues to endure infusion therapy every twenty-one days to block estrogen from feeding the cancer cells. Right now, cancer lives throughout her skeletal system but is not in any visceral organs. She’s beaten incredible odds to survive well past doctors’ predictions. Unfortunately, her survival comes with a price—chronic pain. Gloria is an adventure-loving, free-spirited person who hopes her experience can help other people who are also fighting cancer.

What were your initial thoughts when you were diagnosed with cancer?

I can’t call it shock because I knew it was cancer when I first felt the lump. But the first time I heard the confirmation of my intuition—“you have breast cancer”—I went into a tunnel. I heard “you’ll need surgery and chemo,” and everything was muffled sounds outside my tunnel. All I could hear clearly were my thoughts: ‘This is it. This is how I will die.’

What would you want friends and family to know about helping a loved one newly diagnosed with cancer?

“I don’t know what to say” is ok. Even silence is fine. I didn’t want to hear anything but “I’m here for your” or “I’m sorry.” Or silence. Not “my aunt had cancer, you’ll be fine, or don’t worry.” I wanted them to just be there.

Do you have advice for new cancer patients to help them take care of themselves emotionally?

Don’t start spending too much time obsessing on the internet. Don’t look up survival rates. Everybody’s different—when you first get diagnosed, you don’t even know what you’re dealing with. You need to process that you’ve been diagnosed with cancer, and that’s it. Things will change. You might get discouraged about something that’s going to change anyway.

Have there been any happy surprises since being diagnosed?

What I call my angel experience. I was going through chemo and had to go to physical therapy to get my right arm moving again. A lady walked up to me and said, “do you have breast cancer?” And I was pissed at her for asking because it was obvious that I was weak and bald. But then she said, “I’m a twenty-year survivor, stage 4, in the bones, thoracic, sternum, cervical, and lumbar. You are going to be alright.” The same shit I have! Then she walked away and disappeared and I never saw her again. That was enough to encourage me. That was a real turning point. I’d started out real positive, but then I started sinking. And then she showed up.

If you meet someone who just found out she has cancer, what would you want her to know about how to handle day-to-day life?

Keep a journal. It’s important to write down how you feel. I think the hardest part is listening to everybody’s bullshit. You have to just not listen to too much and try not to look too far ahead.

What’s one of the best decisions you’ve made since your diagnosis?

To just live in the moment. Not to worry about down the road, because you can’t. Nobody’s going to get out alive. Honestly, not having to go to work anymore helps. I don’t have all that stress. Most days I’m in a lot of pain, and when I worked as a nurse, I couldn’t lie down and rest when I needed to.

What’s your favorite part about survival?

I can spend each day appreciating what I have. I appreciate time. I get up and sit on the porch and listen to the birds. And being with Ruby, my dog, is my life. She’s my baby.

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Life with Chronic Pain

Sleep is a sticking point for a body in chronic pain. It’s what I crave the most—to just lie down and close my eyes and not wake up for hours—but it’s often a craving left unsatisfied. Most mornings begin one of three ways.

I wake up as the dogs rattle around in the kitchen, sniffing for errant kibble under their blankets and bowls. I take stock of the situation—is it really morning? How much sleep was I able to get? What muscles are spasming? Am I able to turn my head or is it stuck in one direction or the other? I’m stiff, sore, and need to get out of bed quickly before I can’t get up at all, but I’m thankful to have gotten a few hours of sleep.

Or, I wake up at 3 a.m., my hips throbbing, an electric-like pain shooting across my pelvis. My neck is stiff, my leg muscles are rigid, and nerves light up throughout my body. I stand up in the dark because I can’t stand the pressure on my body as I lie on the bed.

And there are the mornings that are merely extensions of the previous night. Those are the hardest, the ones where no matter how many times I change positions or alternate between the bed and a camping mattress on the floor, I can’t get comfortable. I’m exhausted but in too much pain to sleep. Midnight, two a.m., sunrise, all come and go. Eventually I get up, defeated by my own body, and try to start another day.

I used to take sleep for granted. In college, I’d fall asleep on a cheap blow-up mattress and wake up feeling like a million bucks. Before chronic pain, if I said I didn’t get enough sleep, I meant that I’d had four or five hours of rest. Now, those hours are days. My record is ninety-six hours without sleep, and by the time I finally took enough muscle relaxers to knock myself out, I was shaky and cold and thought I might die.

I hate prescription medication. I use vitamin B supplements, sublingual melatonin, and organic tea to try to sleep. But occasionally, on nights when nothing else works, I reach for a bottle of pills. It’s one of the worst kind of defeats—to admit that my body is attacking itself, trying to stay awake through the hours meant for sleep.

I try to look at chronic pain as a test, a puzzle that must be worked with through trial and error until my body and I come up with a livable solution. I exercise daily, often spending an hour working on my core muscles to help alleviate the pressure on my spine. I eat a restricted diet, avoiding sugar and corn and gluten and a lot of other things that seem to inflame my body. I have a pretty good survival system, but chronic pain is a fulltime job. Every bite of food, every push of a heavy door, every reach overhead to pull on a fan—every single thing has to be carefully planned, because a wrong move can leave me debilitated for days or weeks.

Sometimes, when I’m able to sleep, I drift off to lucid dreams in which I’m running half marathons again, or scoring goals on the soccer field, or finishing my first triathlon. They’re beautiful dreams, but because they’re lucid, I know there’s a certain sense of falsehood in them. Willpower and hope keep me fighting through the sleepless nights. I may not be able to run again yet, but I want to, and desire is a powerful thing. I get mad sometimes—a resentful, ugly mad—but I try to channel that anger into healing. Chronic pain owns the mind as much as it owns the body, and staying hopeful that one day I’ll be okay is my way of telling it to kiss my pain-free ass.