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.

Keeper of the Keys

I turn into the parking lot and park my car at the curb. 

‘What’s a phone number?” Tim asks. “And a last name?

Tim has been greeting me almost daily for the past few months, taking my keys and parking my car, while I join all the other souls in the waiting room. He wears a black scally cap and a perpetual smile. 

I remember the day I met him, way back in May, on my first day as a new cancer patient, unaware that the cancer center offered free valet parking for those of us in their care. 

“I’m new,” I remember saying as I stepped out of the car, feeling quite brave as I recall. “I can walk from the parking lot, really.” He took my keys anyway, smiling, happy in this job that keeps him at the front door in 100 degree heat, in tropical storm rains and crisp fall days. A nurse later told me that once I was well into treatment, walking to my car would become a chore. 

Well, after 18 weeks of treatment, here we are. 

Tim is among a team of people I didn’t know existed before early June but who have become particular players in the middle of my kidnapping. There’s Jean, the receptionist who checks me in at the door and knows my name now. Andra, who must know my birthday by heart — and who places heart and smile stickers on my arm band. Rose Marie, whose name I memorized by thinking of the Dick Van Dyke Show — she’s helped me juggle my schedule so I can have a small semblance of regular life. Marlene, one of the nurses who accesses my port each week (with a truly tender touch), and Colton and Kendra and Ana and Jana, nurses assigned to me who cheered me on when I came back to chemo after a two-week absence. Jamie, my nurse practitioner, high fives me when my counts are good and doesn’t judge while I cry and curse. You’ve read about Hope, before. 

I’ve been getting shots three days a week lately in addition to chemo — an unexpected regimen that keeps my bone marrow strong. Which also means I spend more time at the cancer center than I do anywhere else, other than home. Though I have not gotten to know any patients, these people who are in charge of my daily well being have become a little bit like family. They are pumping me with drugs and good will so I’ll outgrow my need for them, we all hope, in a matter of weeks. 

After that, I’ll have a whole new team caring for me in the next phase of this ‘ridding your body of cancer’ camp activity. Kind of like going from high ropes to low. Or from target practice to sailing (though I hear it won’t be smooth. Tim will still be there to greet me, but my nurses will have moved on to other patients. I’ll miss them.

When we discovered the cancer, I wondered what to tell my children, though I don’t remember what rehearsed it in my mind. I did tell them through my tears that we would fit this around our already busy summer and not the other way around. But the reality of cancer and its treatment is that in the mind of those treating you, there is no more important life event than your recovery. Not grandbabies being born or 91-year-old mothers who need hip surgery, not sisters who fall and break both feet at once, not husbands who find themselves scattered along the edges, waiting for signals. No grandsons you wish you could hold tight but can only visit by FaceTime. No Friday night suppers with friends. No church. Work, when you can do it, has to be from home. The big C breaks in front of the line on all you thought you had planned.

You must simply pull up to the curb and hand over your keys. 

I’m not sure what I expected that first day when I gave my keys to Tim. Like most things, I’ve learned that there is theory and then experience. I would lose my hair, they said. And I did, though in theory I had no idea what it would feel like staring at my bald head every morning. And I didn’t expect when I tried to use mascara on my eye lashes recently and there would be a day when I couldn’t find them. (My eyebrows are gone, too.)

I was so naive as to think I could fit cancer around my life and not the other way around. Missing out on the things that matter to me so much, I know, is a minor inconvenience — momentary realities that when viewed in the long game will seem like a blip. Hair grows back. Eyelashes, too, Google tells me. But the other thing I’m learning about cancer is that it is sometimes hard to see the end of that long game. Just when you look at your calendar and see “last day of chemo!” written (in pencil) and start thinking about who you’ll miss in the windowless room with the warm blankets and the comfortable chairs, the real keepers of the keys (the doctors) throw in another 9—9! — weeks, between chemo and surgery, surgery and radiation, and THE END. Weeks more until they will finally hand the keys back to you and you drive away. You hope forever.

Don’t misunderstand me. I want to be present for the long game, I do. To witness my grandson ride a bicycle and and cut himself shaving, to be present when the new grand baby walks and dances and drives away in her first car. It’s the space in between all that and right now that has gotten to me.

“I don’t remember what I was planning to over summer,” I told Andra, the receptionist, when I checked in for my shot a couple of weeks ago. We laughed, but it was only so I could keep from crying. I really don’t remember what I had planned, though “cancer” didn’t appear once on my calendar, even in pencil. 

What had I planned? Was it trips to New York to walk to school and read books and visit the park with my grandson Henry? Or hours of time with two-month old granddaughter Audie and not brisk snatches when I can hold her? I know those would have been on my calendar a lot had there been any room at all. 

I don’t mean to seem ungrateful. I know there is no more important work for me now than what I am doing — fighting cancer. Getting well. But I wish they would leave a little room on the cure calendar for LIFE. 

A memory: the wee hours of an early spring New York City morning less than two years ago, when I held tiny Henry in my arms and thought: There is no more important work for me to do in this world. I have missed similar moments with Audie, and I grieve that. And so much more. 

I keep telling my doctors that sometimes complete healing doesn’t come in a pill or a vial attached to tubes. Life and family and love heal, too. I have those things, surely, but at a distance that doesn’t feel like part of the cure.

My father, a doctor, believed that medicine wasn’t always the answer to what ails you. And though in this instance I know he’d tell me that this is what I have to do right now, he would also say that the distance between my reality and my hope will narrow soon enough. I just have to hang on a bit longer.

One day in the next few months, Tim will hand me back my keys, and I’ll drive off. Seeing him won’t be on the calendar anymore. I hope he won’t take it personally when I don’t look back. 

The Devil You Know: Chemo Camp, Part 3

The camp counselors in charge of my life right now kept telling me I’d be in for it when the Red Devil made its introduction. I’d read about the drugs they would pump into my body every two weeks, like clockwork, for two months. (The Red Devil is one of two). And even that first time when the nurse brought out the giant vials I thought, well now, they aren’t so red after all. Not blood red anyway, but a brighter pink than I expected. 

I don’t know what I was thinking. A lighter pink might mean a softer blow? Yes, I lost my hair, but I kept my pace that first couple of infusions, resting when my body said to, pushing forward when it felt like I could. I sat for those two hours crunching on cherry popsicles (which I hate) and talking to my sister and my friend AB about everything except all that redness flowing into my veins. 

I would not be outdone by this. I had bandanas! I had special chemo scarves! I’ve had what has felt like a sky filled with cumulus clouds full of witnesses praying for me! And one of my first “counselors” was Joy! 

But it didn’t take long to learn there is not much joy in the actual treatment for breast cancer. There is an overwhelming sense that a stranger has moved into your house, uninvited, and you have no way to evict. You must trust other strangers you’ve only just met to rid your home of this intruder. It may be a complex mission but it’s not complicated, you remind yourself. They do this every day, like the people you hire to do all sorts of things you aren’t personally trained to do yourself. Like roofers and electricians and carpenters and such. And though you  might be “one in eight” in the statistics, you are one among dozens they will see in a day’s time who might be getting some version of the cocktail they are giving, to shed you of this unwanted thing.

And though you might be one among almost 270,000 women who will be diagnosed just this year with invasive breast cancer — 15 percent of whom will have the triple negative kind like you — that’s not really a very large number in the scheme of things. But then, you are that one, in eight, that it’s happening to. 

So that’s what I scrape the skies about in the middle of the night — at 2 and 3 and 4 am, when I can’t sleep. I lie in the dark, praying — even when I don’t feel like it — for myself and my doctors nurses and all the people I know in this world who are hurting — way too many —  and the millions I don’t know but who are as well. Like the young nurse in scrubs in the waiting room at the cancer center last week — younger than my daughter — but already wearing a wig — herself one in eight among her own peer group.

Back in June, they signed me up for four doses of this Red Devil — Adriamycin — which a nurse told me just this week gets that name because it takes you to hell and back before it makes you well. Joy first called it that as she was plying me with popsicles. (Adriamycin can cause mouth sores, so they try to keep your mouth as cold as possible in the 10 minutes or so that it’s actually being pushed into your veins.) It’s so toxic, apparently, that there is a lifetime maximum on the number of doses patients can have. 

After the second dose, all that redness started seeping out, my skin erupting in ways I’d not seen since acne days, a painful and unsightly rash that looks like measles, creeping across my back and chest and arms. A constant dry cough took over at night, so neither I nor my husband could sleep. By day, fatigue set in that wasn’t curable by an afternoon nap.  (I’m on my third dose of Prednisone for the rash, and the number of pills I take morning and night for various things when I barely took more than vitamins three months ago is embarrassing.)

All this time, I’ve been trying to work, at a slower pace, surely, but work. When it’s all over, I want to add the moniker “cancer survivor” to my list, along with grandmother, writer, yeast roll maker, left-hander and dog nose kisser — way at the end, not the first thing to define me, but one small thing among many that make me into me.

Keeping it to just a small thing has proven harder to do this summer than I thought. Two months in, I’m weary. I long to have a Friday night out with friends or spend a weekend at the beach or visit my mother. But in recent days, I’m pinned to the corner chair in my sunroom trying to concentrate on a book because I have little energy for anything else. 

Which is why on Monday of this week, I was back at the cancer center, trying to get someone to hear my weariness, to help me out of it, if that was possible. To find some way to stop the cough and the sore throat and the fatigue so I could actually sleep for several hours in a row.

The young nurse sat across from me, handing me Kleenexes, as I listed my laments. If I could sleep, we agreed, the world would look a little brighter. 

“You’ve gotten through the worst part,” she said. The worst? But I have another 12-week stay at chemo camp before my mother can retrieve me. “A lot of people don’t have as much trouble with this next round,” she assured me.

Even though I am indeed a crybaby, I lied, telling her through my tears that I am not really like that. Except it wasn’t a full-one lie, just a tiny one, as I have kept my counsel, proudly so, throughout much of this ordeal. 

“It’s ok,” she said. “You have a safe place here.”

In that room with her I did feel safe. I changed the subject from myself to my son and his wife, whose first baby was due that day. I wanted to be well enough, I told her, to meet the newest member of our family without a thought of this damn disease that’s stolen my summer. I want to be there for my grandson, Henry, and for my daughter, who will have her own daughter in January. 

“Right now you have to take care of yourself,” she said to me. “But keep your eyes on the goal.” 

“They are my goal,” I said back.

Leave it up to me to make a cancer nurse cry. 

She has a six-month-old daughter — Grace — my daughter-in-law’s name. During our conversation, she thought about own mother and baby, and for a small moment imagined what it might feel like if her mother had cancer like me. 

As we both dried our tears, I searched for her name, but her ID was upside down.

“What’s your name?” I asked.

“Hope” she said. “It’s Hope.”

Of course. Of course.

And so, there was God was again, stepping into my eighth week of chemo, with Joy and Hope, and I learned about Grace. (I promise, I’m not making this up.)  Too serendipitous to be coincidental, at least in my thinking. 

I’m sleeping well now, and my cough is almost gone and I’m feeling so more like myself than I have in weeks. Next week I’ll start my new camp session — two new drugs that will do other crazy things to my body — but I do so feeling renewed, somewhat, and ready for the onslaught. 

And for today. It’s before dawn on August 10, and today is BIG. Sometime today, I hope to finally meet our newest family member, who has taken its own sweet time getting here. We don’t know yet if we’ll be greeting a baby boy or girl — yesterday I bought both blue and pink bows for my son’s mailbox — but it doesn’t matter. Born in the middle of what has felt like a stolen summer, this new baby offers it back. And no devil, red or not, can steal it away again.

I feel bad about my hair

“Above all, be the heroine of your life, not the victim.” 

― Nora Ephron

My hair and I finally came to an understanding when I was in high school and I got it cut in a short shag. Until my senior year,  I’d had years of bad hair days, starting when I was 1 and had not a single hair on my head. 

Maybe I was cute when I was four (not a lot of pictures exist, so there is no telling), but when I was five, the daughter of my mother’s hairdresser — in beauty school at the time— practiced her perming skills on me. My otherwise short, tow-headed sleek ‘do’ was now a nest of curls more suitable for a bluebird than me.

When I did choose my own style — despite every reason to the contrary — I chose a long Patty Duke flipped-up style that drew my chin down to my chest and widened the gap in my teeth. This was the same year I got acne and breasts and everything about me seemed to grow so awkwardly that I wanted to keep myself hidden in my room until the ugly duckling gave way to the promised beautiful swan.

Only that part didn’t happen either. Oh I grew out of the Patty Duke and cut my hair shorter and managed to be if not a beautiful swan, then an ok looking duck.

But my hair.

My sister had long locks in high school (she was dubbed the pretty one and I the baby) and I longed for those. But some hair just isn’t gonna go there, and when mine tried, the ends split and dried out and frayed until when I finally got the nerve to ask that same daughter of the hairdresser — who by now was doing my hair regularly — to give me that short shag. My mother said then, and often, “You always look better with your hair on the short side.”

She’s raised me on bobby-pin curls done up Saturday nights for Sunday church, so I knew nothing of curlers. My sister must have had some instruction — maybe from Molly, her friend’s sister who was in beauty school —  because she rolled her hair with giant curlers, frosted it just so, and it came out looking beautiful, her hair draping across her shoulders like a soft blanket.

But I always felt bad about my hair.

That shag, though, took me through the 70s until Dorothy Hamill came along and showed us how to think about hair as geometry. Her hair molded to her every move, forming exact angles no matter how many “Hamill camels” she performed. This, somehow, was a language I thought my hair might understand. I wanted my hair to move like that. I still remember the day I sat bravely in a new Raleigh stylist’s chair at Crabtree and asked for it. From that day forward, my hair and I began a new relationship with each other, me and my Hamill cut— though I would later abandon it from time to time, depending on Princess Diana’s chosen style.

Then came the 80s, and talk about geometric hair! I got another perm and my new curls formed the perfect triangle. (Every time I see “Sleepless in Seattle” I’m reminded of this.) But now I had not only my head to care for but my daughter’s, so the hair, eventually, had to go. (Hers was so much prettier and thicker than mine.) So I cut mine short, where it stayed, and for the next 30 years, I felt good and bad about my hair, depending on my stylist. 

I found myself  been feeling bad again, after staying with the same stylist for too many years, and in the past year I left him. It was truly like a divorce, leaving the man who’d given me massages on my head and neck for at least 10 years, who’d styled my hair for my children’s weddings — letting go of that, and of our friendship, was hard. 

But from the first time in her chair, I knew Carla would make me feel better, if not great, about my hair again.

And she did, painting it the color my sister said I was born with. And using her own geometric skills to shape my locks so no matter how many weeks passed, the shape stayed the same and in place. I didn’t feel bad about my hair for the first time in a very long time.

And then, well, chemo happened. 

When I entered the Rex Cancer Center doors for my first appointment, a beautiful, tan and bald woman passed by me, her colorful skirts swaying as she walked. Her head, shiny as a bowling ball, glowed as she walked. No way could I sport that look. My head, though fully covered with hair at the time, was covered not in shine beneath my hair, but eczema. Not a good look on its surface, I could well imagine.

We met with our chemo educator a week later, and she looked at my hair and said: “You’ve got a really cute cut.” As in: too bad! And then went on the explain that if I kept my hair, I’d be the first in history. The drugs I’m taking target all the healthy, growing cells in my body as well as the bad, so the healthy, growing hair follicles are the first — at least the most noticeable — to go.

When Carla heard my diagnosis, we both cried. Then she trimmed my hair and said she’d be taking care of me for the next nine months, whether I had hair or not. 

A few days after my second treatment, my husband, who had never even met any of the stylists who’ve cared for my hair in almost 38 years of marriage, drove with me to Carla’s, sitting on her bench as she gave me a buzz cut. (She’d cut it in a perky pixie only a week before, to prepare me. At the same time, she styled my wig so well my husband couldn’t tell I was wearing it for 20 minutes.)

Carla took her time, sliding her shears through my head until I said stop. I’d not seen my head so bald in my life, and to say it was hard doesn’t cover it.

A friend who had breast cancer years ago had given me bandanas to hide my head, and I tied one in a cute bow and went to supper with friends. The next day, we packed up for a week at the beach, and all seemed right.

Until the next day, when in the shower, my hair came out in sheets. 

Long gone was the short shag and the Hamill and the wedge and all the other “dos” I’d sported in all these years of having “the best hair in the family,” so my mother said. But there it was.

My sister came over, wanting, she said, to see my wig. I warned her about what my balding head would look like as I changed from the bandana to the wig, and she held me and cried with me, hard. It was the first of many kindnesses she’d give me during that time.

I have never had long, luxurious locks, but they were my locks, no matter how often I’d felt bad about them. Ever the crybaby, I deserved a moment or two to grieve them. And my sister made space for that.

I hated for my children to see me this way. I prayed that my 15-month-old grandson Henry would know me by my eyes and not my hair. The next morning, I was up early, as I am every day during this kidnapping, and he greeted me with bright eyes and a smile. And all was right.

I’m getting used to it. My husband says he can see my eyes, brighter than they were before. I honestly don’t know why. Because I am tired, and sometime sad, though showering is quick and getting dressed for the day is far easier than it was a month ago. 

As for the Nora Ephron quote at the top of this story: I’m not the victim in my story, nor am I the heroine. (those are my docs, and God) I am, in fact, myself, and I just happened to have been taken aside from my life for a little while while my kidnappers — my care team — whom I am growing to love as hostages do, make me well. The victim, we all hope and pray, is actually the cancer, and that with each sometimes grueling treatment, it is fading, fading so that in a year’s time, it will be the dimmest memory for us all. Most especially for the tips of my hair.

+++

If you are facing a cancer diagnosis that promises hair loss, think about these tips:

• Take pictures of your hair as you love it.

• Shop for a wig while you still have hair, so those fitting you can see how you wear it.

• Wigs can be expensive and are not necessarily covered by insurance. Some cancer centers (like Rex) offer cancer patients a free wig, hat or hair covering. Take advantage of that.

• Have your own stylist trim it to suit you(make sure they are trained in cutting wigs, as of course the wig hair will not grow back)

• Your scalp will signal you when it’s time. It will become sensitive, even a bit painful, as your hair is about to go.

• Allow yourself to grieve. You’ve had your hair a long time.

• Don’t shield your family from the reality of what you’ll look like for the next almost year.

• Consider your beauty. It’s way more than hair deep.

Campfires Burning, Part I

Anyone who knows me well at all has heard my camp story. It’s legend in my family, and as we head into our annual beach week, it’s bound to come up. How my parents sent me to a two-week stint at an Episcopal Church camp on the Pamlico River where my sister had gone and loved it. And how I didn’t stay. We sit around the kitchen table and laugh about how the counselors all tried to entertain me with sailing lessons and camp fires and songs and whatnot, but I was having nothing of it. All I wanted was to go home and sit at the feet of my mother.

Since it’s my story to tell, I’ll tell what I remember. And it’s a lot. I was excited about going, spending what felt like weeks packing my steamer trunk with all I needed for that whole two weeks — short sets and new Keds and books and my Bible. Towels and clean white underwear and white socks. Crisp white notepaper and stamps for writing home. Some cash money for something called Canteen. Sheets and a blanket that smelled just like my mother’s linen closet.

When the day came, I was ready, and my mother drove me, with a friend, I think, the two or so hours to the river. The counselors took me to my assigned cabin, and I dragged my trunk up the steps and into a room filled with bunks. First issue: I had the top bunk. Second issue: No private bathroom stalls, but a room filled with showers with flimsy curtains and girls everywhere. It was almost as if I was late getting there. Then we all donned our bathing suits and headed to the river for the swim test. I think I passed, because they let me in the murky water the next day.

I tried not to cry that first night, up in the air as I was with the crickets hiding in the rafters, but it was hard. I was quiet, at least I hoped. The next day, we got to the work of riverside camp life — swimming and learning to sail a Sunfish, meeting each other, taking a group picture by the chapel. I have it somewhere. I felt like I met everybody in camp that day, boys and girls, even enough to pick out which boys I thought were cute! At the time, they say, I had the memory of an elephant, and I recall some of them still. (Yes later, one of my three-day crushes joined my church. I remembered him, but he did NOT remember me. Big surprise!)

It seemed pretty fun, but I was wary, having never spent time away from home except at my grandparents house. Back then, I’d stand in front of my mother’s wedding portrait and wail. But I was about to go into the fourth grade, and I was a big girl.

But at supper after my first full day of camp, they served me milk.

I have hated milk since I was a baby, and my mother used to add chocolate or sugar and vanilla just to get me to drink a whole glass at supper. But I gagged at the thought of drinking a carton of plain milk.

Chocolate please? None here, they said.

What about water?

Nope. Milk it is or nothing.

So I began to cry. And what these kind people had no idea about was that when I started, there was just no way to stop it, as the Broadway song goes. So I cried and cried. And cried some more.

The next day, the camp assigned me my own counselor, a cute young college kid who took me sailing and tried to talk me out of my misery. (Many years later, I would sit in front of his sister at church. All Eastern NC roads lead to other Eastern NC roads, but I digress.)

But even on a bright day with the wind in my face, there was nothing he could do. By afternoon, they let me call my mother, just to speak, but I pleaded for her, screaming, to come and get me.

On the third day she finally relented, and I waited on the steps of my cabin, my trunk packed, until the station wagon pulled up, my sister riding shotgun.

And this is where the legend really begins.

We walked around camp, and I showed her everything I’d done in the past three days. I held on to her, afraid she would sneak away from me, until I heard the words: Ok, go in the cabin and get your trunk.

Joy! Relief! I was going home! Forged by this news and super human strength, I dragged the trunk out onto the sandy soil, only to see my mother’s station wagon driving out of the camp gates in the flurry of dust. I ran behind her, sobbing, stop! STOP!!!! And just before she reached the arched entryway, her brake lights flickered.

I can’t imagine what went through her mind as she set her foot on the brakes, or the conversation in the car, or when she saw me run into the cabin. Or in my sister’s, as she witnessed the three-point turnaround to flee — though I would learn later that she begged to take my place. (Here with me a few days ago, she still can’t believe our mother made the decision to leave me.)

I don’t want to cast my mother as cruel here. She is not, and she was not then. I think she was trying to break me of my dependence on her, trying to make me stronger, as she had tried so many times in my short, almost 10-year-old life.

She drove me home that day saying I’d be grounded for the full two weeks I would have spent at camp, and I was ecstatic! I never returned to camp until I took my own second grader to a camp all the way across the state, and I cried the entire way home.

I’ve thought about my camp story a lot in the past few weeks, as I have begun a new kind of camp, one where there is no going home, no matter how much I wish my mother could rescue me. This time, she leaves me standing in the middle of that swirling cloud of dust and sand and her taillights never flicker.

And I’m the one who turns around and heads into the cabin and opens the trunk to see what she has hidden there for me.

Just after Mother’s Day I was diagnosed with breast cancer. In the weeks since, I’ve heard it called a journey, but it feels more like a kidnapping, so I’ll stick with that as I move through it. A journey to me is something you choose, like a pilgrimage or a river cruise and a trip to the Grand Canyon, something vast and inspiring, and one you hope will change you. Not that this kidnapping won’t change me — it already has — and though it’s come with lots of colorful brochures, it still feels a bit like I’m stuck on the top bunk in a place I really, really don’t want to be.

But in these weeks, I’ve found that my cabin is full of amazing women who didn’t want to be there, either. But they navigated the murky waters from that top bunk where newbies like me land, to the door where they have welcomed me, heavy-laden trunk and all.

So Chemo Camp has begun, and for the next few months I’m stuck here as the Red Devil, as they all it, seeps into my core and does its work, trying to kill what’s in me without actually killing me. So far, my days have been spent meeting some beautiful faces — almost all of them women — in my church, in my neighborhood, on my care team, in the hospital — and this time, my camp days seem almost bearable. I’ll tell you about them in later posts, as I this kidnapping drama continues.

I realize I’m mixing my metaphors here. Camp and kidnapping are not at all the same thing — for most people. But I’m finding out lately that I am not most people, at least in the kind of cancer I have (two kinds — Triple Negative and invasive ductal, in the same breast. UPDATE: 3!) Typical me, that.

But I promise not to be unique in the way I navigate it. When I first began sharing with friends, I wrote that there was no way through it except through it. A few weeks later, a friend sent me a book of daily meditations, and there it was in Psalm 21: “‘Lift up your eyes it the hills’ and go forward. There is no other way.”

I won’t be writing only about my cancer on this new blog. That’s not fun! But I will be sharing the gifts that come an almost daily basis. One friend, diagnosed last year and not yet 40 — just as she was about to give birth to her fourth child — wrote to me that she wished people would treat each other all the time like they do when they hear the word cancer. (She is cancer free after a year, with a beautiful healthy year-old baby boy!)

She is right. It’s been like having a birthday, almost every day for the past two months. Cards come, presents, flowers from gardens, food and visits. I couldn’t have told you the last time a friend stopped by for a real visit, until this happened to me. It’s been wonderful to feel so loved, and it’s humbling. To know that so many are thinking of me and praying for my healing is beyond measure. And I’m learning how to respond when I hear — and I will — that someone else around me has been kidnapped as well.

So I thank my mother, both for taking me home that day, but instilling in me that some things you just have to get through. You have the tools, and you will help others as you use them. She has done a lot of that in her life, and knowing that her youngest child has to go through this might be the hardest for her yet.

But I am not alone. I have my family, my faith and my cabin mates. And I have my trunk. And I know my mother packed it well.

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ps: Years after Camp I was on a book tour for Nags Headers, signing books in Elizabeth City, NC, when a woman asked me to sign a book for a child whose last name was Spence. “I knew a Penny Spence from here years ago at camp,” I said. From way down the line I heard a voice: “I’m Penny Spence.” She didn’t remember me, but I did her. I have a picture of her by the door of our cabin.

Susanbyrumrountree.com is the original work of author Susan Byrum Rountree. It is copyright protected and may not be used without permission of the author.