We all know what it feels like. That feeling that there’s a secret that’s lurking in our bodies. That dread that what can’t be seen or felt or known is hiding inside of us. It’s inescapable. The fear of the unknown.
I went for my three month checkup with my oncologist last week. This was the longest separation I had experienced from her since the year and half I was diagnosed. It was a routine appointment without incident. I had questions about some side effects of the new medication I would be starting. But my last question was about recurrence.
“How will I know if it comes back before I’m symptomatic?” I asked because at my cancer center, they do not do blood tests for cancer markers.
Her answer was, “Well, we won’t know until you show symptoms like a cough without a cold or a persistent headache that won’t go away. Then we’ll do some tests.” And that’s it. That’s all they can do.
I understand and even agree with the reason why they don’t do blood tests for cancer markers at my hospital. My oncologist said that it hasn’t been the recommendation since 2006 and she and the hospital fully support that recommendation. She said that this test creates too many false positives. False positives result in testing which contain radiation. Why would we want to subject our bodies to more radiation than is necessary? Then, if there’s a false positive and we don’t see anything, we have to test again to see if anything changes in the next few months. Then, how are we spending the next few months? We are spending it filled with anxiety and fear over what might be happening in our bodies. And that’s no way to live.
“But what if something is growing? Don’t we want to know about it sooner rather than later,” I asked?
“It doesn’t matter if we catch it when it is small or when it has caused symptoms. We don’t treat any differently. You get the same treatment. And early detection at stage four has not shown to affect or alter the length of survival,” she informed me.
So, what that means is, I could have a small dot in my brain and if we catch it early, we could treat it and I could die in a year. Or not. But if we catch later, I’d get the same treatment and I could still die in a year. Or not.
I spoke to my therapist about this recently. I described it as like having a piano hanging over my head ready to plummet at any time. It may never drop or it might snap after the slightest breeze. Anything can happen. We can never predict or know for sure.
And that’s terrifying.
But this is it. This is how I live the rest of my life. This is the gift that cancer has presented me. A life of uncertainty. I fear not knowing what is happening in my body. The fear of not knowing what the next day will bring. Because I understand that life can change in an instant. So I live afraid. I live fearing the unknown.