My sister is taking part in a clinical trial for a chemo cocktail. The magic combination of meds is elusive for most cancers. Drug studies are important, and the care that she receives as a part of this trial has been better than we hoped.
Periodically, we have to fill out a Quality of Life questionnaire. My feeling is that they ask the wrong questions if they’re really interested in her actual quality of life, but that’s a different blog post for a different day.
“Are you able to participate in day to day activities with your family?”
“Are you having any new problems with your routine?”
“Are you suffering pain in any new areas?”
“Are you able to manage your pain with meds?”
and my favorite, “Rate your pain on a scale of 1 to 10.”
One to ten. I’m not the one in pain, and even I know that’s an unreasonable scale.
I never thought about cancer pain before my sister was diagnosed. In fact, I only thought about the beginning and the end of cancer. No one in my family had ever had cancer, and the few people I knew who did, well, they died. There was the beginning (Did you hear so and so had cancer?) and the end, (So and so passed away last week.) – and I didn’t know much about what happened in between. The endless tests, specialists, and drugs. Clinics and hospitals and Big Decisions. Those things are witnessed by the family and caregivers, the rest of us are only privy to the end results.
I’ve known cancer survivors, too. Those who made it through the chemo or the mastectomy or the radiation, and their story is different. But all the same, the fight they went through was a mostly private battle. (Did you see so and so? She looks great.)
The day to day cancer is horrifying. As if the uncertainty and constant fear isn’t enough, cancer can be incredibly painful. My sister is in constant pain. After almost 2 years, she is intimate with pain in a way few of us will (hopefully) ever know.
It’s no secret that my sister and I aren’t close, and that we don’t get along. At all. Even though I’m her only caregiver, she doesn’t talk much about her fears or hopes or worries or needs. But when I fill out these Quality of Life questionnaires, she answers my questions. Today’s questionnaire was much the same as past ones, but the planets must have been in line or I caught her at a good time, because today she started talking and she didn’t stop. It was as if someone opened a dam and a torrent of words just poured out of her. All about pain.
I’m not the one suffering from intense pain, but I can tell you what I’ve learned from watching my sister, and from listening to her today. There’s not a place for this on her Quality of Life questionnaire. Maybe I’ll staple a copy of this post to it and send it along.
My sister is usually very still and quiet. I’ve often assumed that she sits in her recliner and stares because she’s thinking deeply about life and death, or possibly plotting how best to kill me. I know that she’s always in pain on some level, but she takes enough pain meds to sedate a woolly mammoth, so I figure her pain is managed.
But she’s not deep in thought. She’s riding the pain. That’s how she described it today. Pain peaks and swells, diminishes and whispers, and she can tell me precisely when her next pill is due by the tide chart of her pain. She concentrates to keep from screaming. It takes every ounce of energy she has (and she has so few) to keep from simply snapping, and flipping her lid. She’s focusing on the pain because that is what is required of her. She resents interruption because then the pain will sneak back up on her, spike with a vengeance and be worse for the lack of attention.
It’s an intimate relationship. And there’s not room for anyone else.
The pain clouds everything around her. No matter how hard she tries to focus on what’s in front of her, she can only see it through a film, a cloud, a wall of murky ache. I assumed it was the pain meds causing the cloud, but she insists it’s the pain itself.
When your pain is ever present, how do you rate it on a scale of one to ten? Does one equal no pain, and ten equal the worst pain you’ve ever experienced? If so, then only ten levels between those isn’t near enough. Is level three the last twenty minutes before a pain pill is due? Is eight the place where even your eyeballs are screaming? And what level are you experiencing when you’re so deep into the pain that there’s nothing else in the world? Is that ten?
On a scale of one to ten, my sister’s pain is immeasurable. Give us a scale of dull roar to searing fire, and then we’ll talk.
Quality of Life. It’s a relative term. One woman’s miserable existence is another man’s happily ever after. There is only one person who can judge your quality of life, and that’s you. In my sister’s case, I believe she would rate hers at a cloudy four. But this year’s four is last year’s six and next year’s two.
After her burst of vocal energy, my sister drifted back into her fugue of pain management. And I went back to filling in her Quality of Life Questionnaire.
“Has your illness or treatment caused changes in your overall appearance? How does this make you feel?”
Real life woman. Virtual World avatar. Likes top shelf vodka, dominant men, blues, sunsets and playing darts. Dislikes insecurity, rap, small children and clowns. I'm either behind the bar or under it.