What Does Recurrence Mean?

After announcing that I was returning to treatment, I heard from a number of family and friends who were struggling with how to respond. Several people said they felt selfish for feeling optimistic or like they were unduly minimizing my illness, etc. They were wondering if there’s a bit of denial and they should be doing something more… also wondering if I’m having “false cheer” or “trying to put a brave face on it.” 

This is something I’ve thought about a lot.
What these friends are talking about is called hope, and it is a wonderful and important thing. Optimism and hope are absolutely called for in this case. Last spring I interviewed Kate Bowler, who wrote about her cancer for the New York Times and then got a book deal and then had this big splash book and is now everywhere. She is in experimental treatment and so far holding steady. What was a 6-9 month prognosis is now over three years. And she spends all her time writing (beautifully) and talking about this terrible thing that was and is going to kill her. Wowza. I would not want to be in that place at all. She saw it as a death sentence (with very good reason) and got about the business of how that feels and what that means, etc. Her most recent article for the New York Times
is about reimagining hope (or letting go of the concept, I’m not sure) when you have no future.

Really, honestly, at diagnosis when I heard about all the treatment available and (outliers, but I’ve met some) living for ten, twelve, even fifteen years thought, well, I am not actually dying. Not now. I might have a decade and I don’t want to live it in a state of dying. I don’t want to live it in a state of “living every minute to its fullest” either. The best way to look at it, it seemed, was to take the example of those I know with chronic diseases– Rheumatoid Arthritis, Parkinson’s, MS, and others who have to basically live this out. “Flares” will happen and we will tamp them down as long as possible. There will be phases of remission and of recurrence, of treating, then assessing where I’m at, then rebuilding. That is what this disease means to me.

And truly, I don’t feel like I’m dying right now. This cancer absolutely seems treatable. It is not in my bones, in my brain, in my heart, my liver, my pancreas. It’s not even in my bowels, which is a yucky surgery and change in life and really common. Yeah, it sucks that it is in my lung. I wish it was just sitting in the empty space where my ovary was not bothering me. I could have put up with that for a lot longer and gotten a longer remission. My body is strong and can manage the chemo as well as anyone. I truly feel those things. I’m not putting on a “brave face” or trying to cheer anyone up. No one needs to feel like this is a disaster. I’m not 35. I don’t have kids. I just wrote a novel. My pursuits are things I can do while resting– reading, watching movies, writing poems. And as only cancer patients truly find out, so so so many people love me.

I know people who are getting chemo and other treatments and yet are in a “dying” state. They are getting rid of things. They are thinking about life when they are gone. They are not making any plans. They are in some ways taking leave. I try to encourage them that no, when you reach the point that there is no more treatment offered, then you can start to die. But before then you are just healing, it is all treating the illness. That’s not the same space. That’s a positive space. You’re killing cancer! You’re freaking killing cancer!

And when you’re back in remission, well hello, you’re rebuilding and living without the poisonous cure. You made it to an island of health to rest before the next big swim.