Cancer, Present Tense
Living in the present requires me to speak in the language of the present.
For the better part of the first decade of our marriage, Christmas meant for Robert and me trips to either Nashville and Memphis to spend the holiday with one our families of origin. Every year on or around Dec. 23, Robert would perform the Tetris dance of fitting bags of wrapped gifts, suitcases and the dog(s) in our VW stationwagon while I’d do a final sweep around the house to confirm the lights were off, the blinds were closed and the garbage had been taken out. Once my survey was done, I’d take a long, lingering look at the Christmas tree, our beautiful Christmas tree covered in large, multicolored lights and silver garland and all the ornaments collected over our lifetimes, and feel a pang of regret at leaving it behind.
“Just once, I’d like to wake up in our bed at Christmas,” I said at some point to Robert. I don’t know exactly when I first mentioned it. Definitely in the latter half of the 2010s, once our Christmas holidays as a couple had become routine and familiar. Likely during one of those Dec. 23 drives. Probably more than once. Though I don’t remember the exact details of the discussion, I know he agreed. I know we talked about possibly working a third step into our holiday rotation: Nashville for his family one year, Memphis for my family the next and at home with ourselves in Knoxville for the final year of the cycle. Our families could come visit us if they wanted to, but their decision wouldn’t affect our choice to stay home. We talked about it, but we never implemented it.
That is, until the universe implemented it for us.
Many people spent Thanksgiving and Christmas of 2020 at home for fear of spreading Covid amongst their loved ones or contracting it themselves or both. I had my 13th round of chemo the day before Thanksgiving and my 16th and final round the week before Christmas, so my immune system was in no shape to go anywhere. Several times over the course of the holidays, Robert looked at me with a twinkle in his eye and a grin on his face and said, “You realize you have yourself to thank for all of this. YOU wanted to stay home for the holidays.”
It was an ongoing joke between the two of us during cancer treatment, the kind of black humor you lean on to feel your way through the darkest hallways of your life. Me, the one with a direct line of communication with God and the universe, asking for seemingly innocuous things and receiving those things in very calamitous manners; My husband there to remind me of the old saw: Don’t tempt fate.
The thing about cancer that I think many people don’t grasp — certainly I didn’t before it invaded my own world — is that you never truly know if you’ve beaten it. You can’t be sure until, as my friend Kate says, you die of something else. There are no tests or scans sensitive enough to pick up any infinitesimally small cancer cells that may have evaded treatment, cells that might lie dormant for months or years before exploding into metastases. We all either know someone or know of someone who had seemingly beaten cancer and was living a life that appeared somewhat normal only to have it return with a vengeance.
I can’t speak for all oncologists, but the ones in my life communicate in not fully certain terms. Instead of being cured of cancer you have “no evidence of disease” or, in clinical terms, NED. In other words, there is no reason for them to think there is cancer in my body based on the negative pathology from my mastectomy and the clean results of my latest mammogram and the lack of any current symptoms. But the recurrence rate for Triple Negative Breast Cancer is 40 percent, which includes people who were believed to have had a successful course of treatment for early stage cancer. “No evidence of disease” is the most honest thing they can say.
To experience cancer is to struggle with or, if you’re lucky, to make peace with living in a muddied place of uncertainty for the rest of your life. Suleika Jaouad puts it eloquently in Between Two Kingdoms, her beautiful memoir about what it is to be a young adult with cancer: “To learn to swim in the ocean of not knowing — this is my constant work.” Many cancer survivors talk about having to learn to live in the present because their future seems so much more unknowable (or perhaps knowable in a frightening way) than that of a fully healthy person. This constant state of uncertainty means cancer is always present in your life, even outside of treatment or symptoms, even when you are NED. Even when it’s not actively dictating your day to day life, it still exists like a ghost lingering over your shoulder, much in the way that grief does.
For me, living in the present requires me to speak in the language of the present. To swim in the ocean of not knowing means to speak of cancer as it affects me now. I am done with active treatment for early stage breast cancer. I currently have no symptoms of cancer. I am free of cancer to the best of science’s ability to detect at this moment. I am working through lingering physical and mental effects of cancer treatment.
You will never hear me treat cancer as if it was part of my past, nor as if it will never be part of my future. I’ve never been able to bring myself to say, “I had cancer.” It feels inaccurate and imprecise. “I’ve beaten cancer” or “I’m cured of cancer,” feels like an invitation to fate to prove otherwise. Fool me once, fate, shame on ... shame on you. Fool me ... You can't get fooled again.
This blog (or newsletter as the other Substackers call them), will be a place for me to capture what it is to live in the present with cancer always lurking over my shoulder. A place to speak in the present tense about cancer, even when the people in my world may assume that cancer is in my past. I will still write some about the past in order to pin down some of my fleeting memories of being in active treatment, though I’ll probably do so with a reflection of what those memories mean to me now.
I can’t promise to post with any regularity. I’ll write when inspiration manages to coincide with me having the time to sit down and actually write. If you’re interested in more of these long-winded, rambly posts about cancer, then I encourage you to subscribe so that the posts will hit your email inboxes and you won’t have to actively remember to visit these pages.
The notion that I caused my own cancer for wishing for a Christmas at home might reek of dark humor, but Christmas 2020 was full of light. I had a pre-surgery MRI at the hospital the morning of Christmas Eve and got to witness the joy on the faces of the medical staff who were lined up in the lobby to receive their first doses of the Covid vaccine. Later that day I sat on the sofa and streamed the Christmas Eve masses of both the church of my childhood and the church I attend now. I made cinnamon rolls for Christmas breakfast, which we ate in front of our tree with its multicolored lights and silver strands of garland. Robert cooked us a Christmas feast, and the leftovers were all ours too.
Oh, and it snowed. It started snowing Christmas Eve afternoon, and several inches blanketed the outside world by the next day. It was the only white Christmas of my life that I remember. If we’d been traveling to Nashville or Memphis for the holiday, we would have missed it.
As a former reporter, I’m very deadline- and paycheck-motivated when it comes to writing. I will neither be paid for writing on this site nor punished for not doing so, so if you expect regular posts you will be disappointed. But rather than checking the site from time to time only to find an absence of updates or, worse, forgetting about my site altogether, you can SUBSCRIBE and receive an EMAIL (which you can then leave unread in your inbox as you choose) every time I get my act together and post.
I share my thoughts and feelings here both to keep anyone who cares about me updated but also in hopes that it will make someone else with cancer feel less alone. If you know someone who might need a virtual cancer buddy, then please feel welcome to share my site with them.
So glad your mother shared this site with me. Your mother and I met in the last ‘70’s in icu before she met your father, I think. When one works closely with their coworkers the life events are shared often. Though their family members may or may not know us, we know them. Probably, we know more then we should or more then you would dream that we know. Through many work conversations I have watched (heard) you grow up in the same town that my children (5) grew up in.
I anxiously await your next blog. This time instead of watching or hearing about your life events, I will be reading them.
This is so beautiful and I’m so glad you set up this space for yourself. Thank you for sharing. ❤️