Sure, knowledge is power, but there’s comfort in naïveté, too, when it comes to expectations for cancer care.
When you’re going through a healthcare crisis, unless you’ve been through something similar before, there’s a lot you just don’t know. You start with a hypothesis from you and your doctor(s) that something could be wrong.This initial phase is followed by all kinds of tests to help determine what “wrong” really means. From there, you hopefully land with an accurate diagnosis and viable plan of action.
You become inundated very quickly with data and anecdotes and messaging from your team about what’s about to happen to you, as a patient you’re still pretty naive. And while dataand science provide important guidance and predictions based on others who have faced what you have, the truth is, every body is different. As such, absolutes don’t exist.
Before starting chemotherapy, I tried to balance between reading too much and reading too littleabout what could happen to me. There’s a saying that knowledge is power. There’s truth in this, but there also can be comfort in naivete. I personally believed predisposing myself to hypotheticals was going to counteract the strength I needed to move forward. I figured my body was going to do whatever it was going to do, irrespective of whether or not thousands of people before me had commonality in their reactions to the drugs that were about to enter my body.
I remember how matter-of-fact my oncologist was in telling me my chemo plan and what side effects I could expect. I nodded my head and said I understood, but I wasn’t prepared — nor could I have been — for what my reality turned into.
Drowsiness, loss of appetite, loss of hearing, nausea, ringing in ears, constipation, low white blood cell count … the list of all the things that could happen during chemotherapy was endless.
Nervousness also made the list. I chuckled at that one. I’d bet most cancer patients are feeling that without any drugs at all.
During my four months of chemotherapy, it was all about getting through each day. Every day was a battle with something, and in order to manage the pain and discomfort, I had to take every moment as a single moment. The long-term goal of being cancer-free was my North Star,butjust getting through the day was victory enough.
While I knew some of the side effects like nausea and hair loss were going to be temporary, I was worried about some of the other changes to my body that were likely permanent. The first outcome was neuropathy in my feet. At first, I was devastated. I thought,“I’m not the same now. Iwon’t be able to do the things I’ve always done.” While it may sound dramatic, it was a shockingshift for me and coming to terms with these changes took time.
Three years post-chemo, mypermanent damage includes:
I’ve got tingling in my hands and feet most of the time. It doesn’t mean I can’t feel them or work with them. I still walk two miles every other day and use my laptop every day for work. Some days are more tingly than others but so far, the continuous sensation hasn’t stopped me from living the way I used to.
Nerve damage in my arm.
From my second metastasis surgery, I now have permanent nerve damage in my right armand bodice. It’s not painful like it was right after the surgery, but I can no longer fully feel the back of my arm. There’s a muscle that was likely cut, and while the entire area is sensitive, I’m functioning fine.
Ear ringing and sensitivity.
For the year following my last surgery, when music was too loud or I was sitting in a noisy restaurant, I’d tell whomever was around me,“This is hurting my ears; they became very sensitive from my chemo.” I felt the need to remind people that the distress from my cancer journey was never far from my mind. Even though the people around me had moved on (rightly so), I hadn’t.
Today I don’t talk about these issues very much, mostly because I feel less like a patient and have come to terms with the fact that these impacts to my body are just what they are. My fingers will likely tingle the rest of my life and my hearing will never be the same — and that’s OK. Because what I know now is that these small annoyances don’t compare to a wonderfully big lifethat I’m still here to live.
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