The Brave New World of Stage IV Cancer

Recurrence is a funny world. It’s the one thing we all dread until it happens. I think it’s because our brains are meant to solve problems. Once it has all the information it needs, it begins to come up with an explanation that is settling and a plan for a future. In my case, once all the tests were done, my brain had decided that my body had a repairing glitch. Having driven a lot of old cars with strange glitches, like windows that wouldn’t roll up in the rain. or wouldn’t start on an incline, my brain was used to computing a solution to the problem. It has resolved that with some minor medical intervention I’d be able to get back on track. After all, I felt and looked incredibly healthy.
When I went in for my hash-out-a-plan appointment, I was not ready for this strange new world of Stage IV Cancer with its new vocabulary – incurable and a goal of palliative care. To me, palliative care meant hospice. And the fact that I felt so good and was still healthy and we were still entertaining more aggressive treatment meant we had loftier goals than that. I was willing to make a deal. I’ll take the word cure – in all of its forms -off the table when speaking about my cancer. But my goal is flat out remission, the “cure replacement word.” And I’ll settle for not knowing if I’m actually cured until I die from something else.
When I left the doctor’s office that day I felt demoralized by the new lexicon. And then I got angry. I decided that night that I define wins in this battle, just as I draw the battle lines. Not cancer. Not my doctor. Me and my body.
The next time I saw my doctor I told him adamantly, ” Remission is in my future. And that’s my story until it’s not my story.” He smiled and nodded. And now I see, remission is only part of my goal. The other part is to change the way we talk about Stage IV cancers, because many of us will live long, healthy lives, go on to fight other cancer battles and die from completely unrelated causes.
What I mean is this: No matter what our diagnosis is, what our doctor says or what language he or she uses, it’s the story we tell that defines our battle. Cancer is so unpredictable and its remedies are changing so rapidly, no one has an answer for any of us. And when there are no answers, there are choices. And our choices can change, just was we will be changed by them. We don’t have to be afraid. We can take the risk and enjoy the ride. It doesn’t mean that at times I don’t have that pit in my stomach feeling. Then I remind myself: It’s just the roller coaster of life – and that’s the feeling you get when you’re on the downhill glide.

Liz Johnson

Liz Johnson

Writer. Blogger. Advocate. Breast Cancer Conscript.