Lately, I’m coming across so much information about what’s lacking in our cancer care system. And I can tell you for sure, there’s a lot. It’s more medical intervention than it is care.
First, once you’re diagnosed, there’s an onslaught of information including that about resources available aside from medical care (acupuncture, massage, social workers, therapists, physical therapists, etc.). And it’s great information. But at first, before treatment begins, I honestly had no idea why I’d need it. I still don’t fully understand all of it. It gets put in to the folder labeled “Cancer Intro Packet” and you take it home with the hundreds of other sheets of paper slipped in there.
Second, you get a lot of attention and care right at the beginning. Zillions of appointments, consultations, exams and even conversations with nurses to have you assess on a scale of 1 to 5 your stress level. But suddenly once treatment begins, you’re on your own. You go get treatment; the nurses are nice and helpful. And they smile at you as they send you home, telling you to have a nice day. Yeah, right. Let’s trade places and see how nice your day is. Honestly, they have NO idea what I’m in for over the following 10+ days.
Third, my oncologist isn’t really that involved. The vast majority of my care right now is coming from Butch and Sally. Butch manages the physical side and Sally cares for my mental health. I am so thankful for them. Without them, I’d be floundering. And probably taking far more prescription medications for every symptom that arises. That’s not to say that I think Dr. Paul is a bad doctor, it’s just his role. He assessed my condition, evaluated my prognosis, prescribed my treatment and that’s it. I see him when I go in for treatments. It’s brief. He sends in his PA first. She asks me all the questions about how I did after the last treatment. I tell her all my symptoms. She scribbles. I like her. She’s very nice. But I feel like a subject in an experiment. Then Dr. Paul comes in. They lie me back on the exam table and each takes a side to examine. Simultaneously. Left boob, left nodes. Right boob, right nodes. Switch. I feel like the stock car in a NASCAR pit stop. They’re gentle. It doesn’t hurt. But it feels pretty factory like.
It’s been a few too many times that I’ve heard “chemo is poison. Hopefully it kills the cancer faster than it will kill you.” My oncologist didn’t say it. But others have. Outloud and in writing. I know it’s poison. But it’s also medicine that can save my life. And it’s all I’ve got. I need it. Despite not wanting it. So I will do it. But I continue to believe that there has to be a better way. Someday we will look back on the barbaric treatment regimen of poison, slash and burn to cure cancer and realize there’s a better way.
I’m not sure why everyone feels the need to remind me that chemo is “poison.” I know. I’m the one who really knows. Telling me makes me feel worse. It’s like telling the person with major burns that fire is hot, except that I have an actual upside to what’s happening to me. I’d rather focus on the therapeutic effect that it’s having on me. There is a reason I need to receive this medicine. And it’s working. My tumor is shrinking and it doesn’t hurt anymore. I can comfortably lie flat on my stomach and not feel it anymore. It’s a better, more comforting thought to think about how it’s helping me instead of how I’m really just dodging the bullets of the major side effects. I’m not trying to bury my head in the sand. It’s not even possible to ignore the “uncomfortable” side of chemo. I just happen to think that focusing on the benefits and the reason behind having to receive such harsh medications is the way to manage the process of chemotherapy.
I’ve said a million times that the power of positive thinking is so much more powerful than people generally want to concede. I’m not sure why that’s true. I think most people can acknowledge that negative thinking can make you have a poor attitude, lack energy and focus, become depressed, experience panic attacks, manifest suicidal thoughts and more. So WHY NOT the opposite?? Positive thoughts CAN help people heal more quickly, have fewer side effects, feel stronger, and have an overall better outlook on complete health after cancer. There is an innately strong connection between the body and mind. That’s why the placebo effect exists as a thing. I like to remember that what we think about, we bring about. Remember, if you think you can or can’t, you’re right.
I dislike saying “beating cancer” or “fighting cancer.” Ugh. That sounds so exhausting. I don’t want to go through my days in a constant battle, with myself. That sounds horrible. So I’m prone to think of it as working with my body to return to full health. Do I want cancer as a disease to end? Yes. Do I want better treatments for it in the meantime? Of course. But I don’t want to fight, battle and beat. That assumes that people who die from cancer were somehow less strong contenders. That they didn’t fight hard enough. That they got beat. How sad. I read headlines like “lost her battle to cancer today.” And I think it’s an awful way to be remembered. We give such delicate care to the headlines when someone commits suicide. We’d never say “lost his battle with the gun.” We say, “passed away.” Beyond that, most times we don’t really need to know much else.
I don’t like any phrase to describe me that starts with a medical term — “cancer patient,” “chemo patient,” or in the future “cancer survivor.” How about simply, “Erika.”