A Year of Living Dangerously
One year ago today I found myself in room far across town talking to a doctor about my favorite shoes. They are straw, with florets across the toe in greens and blues and deep peach, and I’ve had them for years. They are perhaps my most uncomfortable shoes, but because I have a narrow foot they were expensive, I wear them anyway, and through the years I have worn them down until they are almost bearable.
The doctor wore a functional pair of clogs with a pretty swirl design as I recall, and as we admired each other’s choices, both of us knew what the real story was and it had nothing to do with shoes. Her work that day was to find out if I had breast cancer.
“If it turns out to be something, I can get you in pretty quickly,” she said… or something of that sort. I am no doctor but was raised by one so I knew that she was telling me without the words that yes, you do have cancer. (She said as much during the ‘official phone call a few days later. ) No, the story was not going to be about anybody’s shoes.
Yesterday I looked around the infusion room at the cancer center where I’ve spent much of the past year and these days everyone, not only the nurses, wear masks. A woman next to me kept asking her nurse how much longer she had to sit there — a long time, it turns out, because she chose a treatment that will let her keep her hair — she wears something akin to an ice helmet that she has to keep on for hours, and I want to say to her, Honey, that is so not worth it. Though I really miss the hair I had before cancer, the trauma is enough without one more hour in the infusion chair. But one thing I have learned in my year of living with cancer treatments is that everyone has to choose their own course.
Colton, one of my favorite nurses, looked like he was genuinely glad to see me when I walked into the room. He was my nurse three weeks ago, too, and in March he and his wife welcomed their new baby. They hope she’ll share the same day care with my sweet Audie if she our grandchild is ever allowed back there. It’s usually for hospital employees, and Audie got a rare spot way back in December, though now it’s open only for the kids of essential workers. So she is home with her parents every day.
But I digress.
I have not written anything in a long time. Not since what I thought would be my last chemo treatment, in November of last year. I should have been long done with the infusion room by now, should have left my nurses — did, in fact — tell them goodbye with great flourish.
Gone just about three weeks before I was back here with a new diagnosis and a new treatment plan — for a cancer they had missed the first time around… it was there all along, but because of the luck of where the biopsy needle landed they missed it, finding it only when I had a lumpectomy Thanksgiving week. The pathologist did post-surgery tests because they knew my oncologist would want to see it. Not everybody gets that, my oncologist told me back on December 6 when I went for what I thought would be my ‘see ya in 6 months’ checkup.
So instead of two kinds of cancer, I had three. The new one, Her2Neu+, requires a full year of treatment with a targeted drug. And though it had responded to the five months of chemo I had, I don’t get credit for that. Everybody keeps keep saying I’m cancer-free, this new round of infusions will take me through December to make sure no rogue cells have escaped to other places in my body. It’s hard for me to believe anything right now.
Another full year.
So here I am.
It took weeks for me to stop crying. I endured six weeks of radiation in the middle of my denial that this was happening — angry and sad, confused and as shocked as my doctor said she was — the giant radiation machine wrapping its in arms around me, beginning its own pillaging of my weary body. At the time, I was one of only five patients with three kinds of breast cancer at once at our cancer center. There have been more since my new diagnosis, because more post-op pathology is being done. I like to think I started a trend.
And then in the middle of it all, early on a Friday morning midway through radiation, my third grandchild made her debut. I woke up to a text from my son-in-law: “Baby is here!” though she wasn’t due for a couple of weeks. By the time I walked into the radiation room for one of their first appointments, I had my plane ticket to meet her. Baby Hazel knew I needed her to arrive on a Friday, and within hours I was holding her in the hospital, wondering if she would be at all like my grandmother, for whom she is named. (So far she smiles a lot more.)
Because radiation is daily, it would be another month before I was able to visit her again. By then, my body was purely beaten and burned — though some had said radiation would be a walk in Central Park on a spring day compared to chemo, I found it the opposite. Dehumanizing, for one thing, as the techs drew with orange and blue Sharpies all over my upper body to guide the machine to the hot spots. Painful for another, as I covered my breast and back with soothing lotions to ease the burns. (Yes, radiation’s rays have to exit somewhere, so the back is literally their back door. Who knew such thing?) Day by day I lay on the table, watching the machine stop over me, the tiny plates behind the machine’s glass window reshaping themselves over and over so at last they formed an image that looked for all the world like a map of the State of North Carolina.
A few days after radiation ended in early February, I caught another flight to New York, armed with a packet full of antibacterial wipes. I boarded the plane and wiped down every surface I could find — did the same thing in the cab — though I would learn later that it takes five full minutes after wiping for surfaces to be clear of germs. Five months of chemo and six weeks under the radiation radar had left me with weeping wounds that would take three months to heal, and feet so wracked with neuropathy that I can hardly feel them. These are just two of the realities of breast cancer’s cure. (My nurse practitioner keeps telling me that if it’s going to happen to someone, it’s going to be me.)
My medicine, I have always said, is my family. Reading stories to my grandson Henry, bouncing Audie on my lap, getting to know Hazel, smelling my daughter’s hair have seemed like the best ways to relieve my cancer funk. So I flew north that day, searching for recovery.
Now that I’ve been sequestered at home (for the second time in the past 12 months) I don’t like to think about how I walked through the Upper West Side of NYC through grocery stores, the pediatrician’s office, or simply down Broadway without a mask. I washed my hands often but not the groceries themselves like I do now. Who knew then that COVID-19 lurked everywhere, even on those cold days in February? And that within six weeks, my daughter and her husband would leave New York for the safety of North Carolina, not knowing when they’ll be able to return to what is now their home.
On treatment days I don my mask and walk up to the Cancer Center doors, where I have to take it off, sanitize my hands and gingerly take a mask they provide from a small brown bag on the table. (no bringing one from home.) They take my temperature and ask me questions about travel, testing, coughing, etc. Only if all my answers are ‘no’ am I allowed in. The waiting room sits mostly empty, as it’s reserved only for patients in active treatment. No family or friends can come with you. I think of the days my sister sat next to me, my husband, my friend, and how some patients brought three or four people to their corner chair in the infusion room. No more.
I will be honest: I don’t want to be here. I wish my plan had been the one I started with last May — chemo, surgery, radiation and done. If that had happened, I would be well on the way to finally feeling like myself again.
They tell me my new chemo regimen is not so hard on my body as before. I can tell it’s not, because I’m not always as tired as I once was. But the reality is that in the past five months, I’ve felt almost normal for exactly one full day, and it was glorious. It was the Saturday after Christmas, and I woke up early and without pain, walked the dog then started cleaning out my refrigerator practically down to its frame — something I hadn’t done, I’m embarrassed to say, in months. Though I did put my feet up for a bit, that night I attended a birthday party for friends, making up my hairless face and lash-less eyes, changing from my pearl earrings to large hand-painted dangles — went out on a date with my husband. And we danced! I so wish that dream had lasted longer.
A few weeks ago, I pulled open the notebook I’ve kept filled with paperwork from my illness. I don’t know what I was looking for — perhaps some evidence that despite it all, I had made it through the worst of it. Buried in the hundreds of pages was a paper filled with sketches of my options from my first visit with the surgeon, way back a year ago. On that day, she suggested that a lumpectomy would likely be all I had to do, but a biopsy would show for sure what I was facing. Within days, my options weren’t really options anymore, but necessary treatments to keep me alive.
I sorted through the pages and felt my throat tighten until I was weeping. How had I done all this — the surgeries, the infusions, the days when I could barely hold my head up, the baldness, the loneliness and abject fear?
What a mystery it all is to me now. God, surely has been central to it.
Today I reached into my chaotic closet (no, I have not used this time of homebounding to straighten my life) and found my shoes. I’ve not worn them in months, but I put them on today, just to see, as my mother has always said about most anything when shopping.
Just to see. But what was I shopping for?
The shoes fit poorly, just like they have always, just like this whole cancer thing has fit on me. Most who look at these shoes will likely see straw, finely woven. Pretty shoes. But what I saw was not a pair of straw shoes with a few rosettes, but starbursts that I had always known were there but had never truly noticed.
As hard as it is, what is ahead of me is not impossible. There are starbursts, yet to see.
