Back to Battle

There’s a discussion among people who have or have had cancer about whether to describe treatment as a battle. Some people point out that cancer is “of us,” that we shouldn’t be going to battle with ourselves. Others say that such a description results in an unpleasant dichotomy: some people win, some people lose. Some people live, some people die. Some people live, some people die. The battle metaphor may suggest that some people are to blame if they “lose.” But I reject that. Cancer doesn’t fight fair.

Maybe it’s the advocate in me or maybe it’s just me tapping into the combination of characteristics that have always served me well, but I admit it–I approach it as a battle.* I look in the mirror the morning before treatment and I wish I had war paint. And those cancer cells might be part of me, but they’re in direct violation of the number one rule of living in my body: don’t try to kill me.

So today I start two battles: one, to kill this cancer, and two, to keep on living life on my terms. The second fight probably takes the most out of me, but it’s also the very best reason to keep fighting the first. And it’s the only of the two battles over which I have any real control control.

* With the big caveat that this is a very individual perspective and I would never question the way anyone else approaches it and I always give myself permission to change

How to Live Forever

Ok. I’m going to be straight with you. This is not a post about how to live forever and I am not an expert on that particular topic. At all.

If anything, this is a post on not living forever, even when your death still feels impossible. Like today. I presented the opening plenary talk for a major conference in my industry. I shared my work with them and they got excited about what they could do with it. About what we could do with it together. And I smiled and exchanged ideas. And in the back of my mind, I thought, “Will I even be around for this?” And then I thought, “Of course. It’s unthinkable that I won’t.” In that moment, it really felt unthinkable.

But later, when I was alone, I knew better. It’s not unthinkable. It’s something I have had to think about a lot over the last couple of weeks.

The cancer I was treated for in 2015 is back. The good news is, it’s curable. The bad news is, they don’t know how to cure it.

The cancer I had was rare to begin with—it was a small cell tumor that presented in my breast. Small cell usually presents in the lungs and occasionally in other sites. But never in the breast. Well, almost never. And it has since defied other small cell rules—fairly long time to recurrence (good), local recurrence instead of systemic (good), and less than optimal response to chemotherapy (bad). All of this means that the doctors are a bit…. befuddled… about how to proceed.

When you have cancer, you don’t want your doctors to be befuddled. One oncologist told me that when it comes to choosing my systemic treatment (which will accompany radiation), I may just have to flip a coin. Maybe “flip a coin” is the official medical term for something important. Maybe it doesn’t mean what I think it does.

While I generally  focus on life and curability and positivity and community and all the resources I will need to muster to step back into the ring, it is impossible for me to escape the possibility that I might die. I mean, of course I will die. We’ll all die. But that I might die soon.

So I’m a little more obsessed with death than usual. Today I read a political article that included a reference to the founder of the Breitbart “news” site and it said, “before he died…” and I found myself jumping to Wikipedia to figure out how he died. Heart issue. Instant death at 43. And I wondered—would that be better? To go instantly? Would it be worse? If he had to die at 43 and he had a choice about how it happened, what would he choose?

And as I was reading about Breitbart’s death, it struck me as funny that this is a person with whom I probably had nothing in common. Honestly? If I had known he existed back then, I probably wouldn’t have liked him much. But here I was, wondering what he would think of his death. About whether he would do it over if he could. Absent any judgment of his political ideology and with only the purest of curiosity about the humanity of another. Because for all our differences, neither of us will get to live forever. At some point—and, with any luck for me, it won’t be soon—we will share death.

[I feel compelled to note that this post was drafted last week. I now have a treatment plan (!). More on that another day, if I decide to keep writing.]

énouement and gratitude and song

Palm BeachIt is a windy morning in Palm Beach. The clouds are rolling through quickly, casting dark, then glimpses of light, as they go. I pull my sweater tight when things go dark and turn my face up instinctively when the sun reappears.

“I’ve looked at clouds from both sides now.”

I am sitting at a table for one in the breakfast restaurant at the Four Seasons, drinking my green tea slowly to justify my poolside table, but I know nobody will ask me to leave or even get fidgety about my presence. That doesn’t happen at the Four Seasons and, whether I like it or not, it doesn’t happen when you sport the shiny bald head that betrays your illness even when you otherwise appear healthy. People treat you differently when they think you are staring down death. Besides, I’m celebrating. Chemo is over. Surgery is next week.

“The wheels on the bus go round and round.”

Anyone can get hit by a bus any day. I used to say this all the time. I hear others say it all the time. It is a stand-in for understanding your own mortality, but it is mostly bullshit. I certainly did not understand—really, truly feel—that I could die any day whenever I said it. If anything, saying it reinforced just how ridiculous it was to think that I could die. I was young and healthy. My bus was traveling down a side road, completely out of view. Until it turned the corner this year. Until it was charging at me, at full speed for awhile, and then with less resolve over the last five months.

I am not sure I will ever forget how it felt when I first realized the severity of my cancer diagnosis. It felt like I was kicked off the bus that everyone else in the human race is traveling in. I was left standing on the side of a road in the middle of nowhere with no luggage, dazedly waving as the bus charged forward, full of occupants singing some song with words I once knew by heart but could no longer remember.

It feels different now. I know that nobody is actually on the bus. We are all just walking down the road, trying to gain as much distance as our legs will travel before our bus turns the corner and heads straight for us. As one book put it, as isolating as illness and death can feel, death is the only thing we all have in common. We will all be hit by our bus and nobody will decide when or how. We are all connected by this and, at the same time, we are all alone on the side of the road. But it is one hell of a road to walk together, alone.

“Word is bond, I go on and on.”

And I am grateful for every single day I get to keep walking down the road. I am grateful my bus has not yet hit me. I am grateful for light and breath and new mornings. I am grateful for the most basic things. Aside from a very unlucky diagnosis, I have had an unthinkably lucky year. My cancer is treatable and the treatment is working. I am surrounded by loving and generous friends and family—some I always knew to be there and newcomers who have surprised me. I live in a beautiful place I never take for granted. I get to celebrate by the ocean. I am privileged in so many ways.

“But I was so much older then, I’m younger than that now.”

I learned a non-word today. Énouement, the bittersweetness of having arrived in the future, seeing how things turn out, but not being able to tell your past self. It made me think of my past self—not just the one standing on the side of the road five months ago who thought she was watching the bus pull away, but also the one who, long before that, always believed she could control every outcome in her life. It made me think of my future self—the one who will again face loss and pain and grief. And death. I think of these selves, who are walking down the road with me and how I want to tell them something but, even after all of this, I somehow feel like I know less about much, much more. The only thing I want them to know is that everything is going to be okay. Even when it is not.