Chemo Camp Finale — Letters from Home

Nov. 17, 2020

I have been thinking about y’all a lot lately. Who, you say? Y’all. All y’all, as we love saying in my Neck of the woods. Do you see that stack of cards there? (more than 250 of them) The flowers? The little gifts? These things have filled my soul these past 18 months as I found myself captured in Chemo Camp.

So I have been thinking about all y’all who got me through it. Re-reading your notes and seeing your faces as I did, thinking of the emails, too, and your visits (way back when those where allowed), the food (Lord, have mercy, the FOOD!) the walks and the phone calls and the quiet moments when we sat in silence and you let me cry as I tried to take it all in. Your laughter. Your donations to Susan G. Komen and the Walk for the Cure. Your telling me I looked beautiful without my hair (though we all know I didn’t) — and now when you tell me you like my new “look”. Every single one of these things that you did for me has made my life so rich while I waited for camp to be over.

November 12, 2019

I didn’t save any letter my parents had time to write when I went to camp when I was 9. I wish I had (maybe my mother has saved the no doubt thousands of letters I wrote to her in the three short days I stayed, though if she has, she has not revealed this.) I’m sure if I had save those letters from home they would have been much like yours: We love you, you can do this, think of all the friends you’ll make and how much fun you’ll have (well, maybe not that last idea for chemo camp.)

When I thought I was going home from camp last November and then found out a week later that my mother was not, in fact, coming to pick me up, and that I would be staying for a whole ‘nother YEAR — you stayed right there with me, sending cards, calling, walking, assuring me that I could stay as long as was necessary, and then I could go home. (No more meals, but alas, I had packed on the casserole pounds in the previous year and girded with such sustenance, I soldiered on through more camp activities.)

Like target shooting.

I remember my daughter did this at her week-long camp and could easily hit the mark, so much so that when she CHOSE to become a camp counselor while in college, (she must have gotten that DNA somewhere else) the camp assigned her this post. My daughter and I have never been the kind of twinsy mother/daughter team some people think of. I spent years teaching her how not to be like me, so I consider this choice as making me, finally, a champion.

And then I became the target shooter, with only one goal in mind: Get rid of the damn cancer.

And guess what I did? I GOT RID OF IT, with the guiding lights of my doctors and the nurses at the Rex Cancer Center, who finally LET ME GO HOME last Tuesday. All by myself.

Though my old pal Tim and my nurse Hope (who hugged me, despite all the rules) wished me well, I drove away, with only the shadow of a tear in my eye.

“She’s grown,” I could hear my mother say. “You have handled yourself admirably,” my brother actually texted.

That part, “admirably,” he quoted what my father might have said, if he were to have reluctantly shoved me off to cancer camp. He is right, Daddy would have said that, but I honestly don’t quite understand.

A friend of mine who had cancer just before me has said often “cancer can’t wait.” (It’s a tagline for a local organization raising money to cure every kind of cancer affecting women, not just breast.) And this is so very true. Sorting through all my cards the other day, I found an email I wrote to my Bible study on May 15, 2019, the day I got the news. I was to lead it the next day, and I told them, so niavely, that a cancer diagnosis would not disrupt the dozens of plans I had for my life in the year to come.

How wrong I was. A cancer diagnosis does NOT wait. Within minutes of learning you have it, you turn you life over to those caring for you and though you ask a thousand and more questions, not one of them is “when?” because the answer is always: “right now.”

One of the few things I remember about real camp is the swimming test. Everybody had to take it, no matter what. I remember looking at the murky river water with the tadpoles swimming in it and asking, “when?” and they said pretty much: “Now”. And I had only two choices: dive in and get it over with, or wade in and swim from one point to the next, as best I could. No bravery. Just truth.

The same is true for Chemo Camp.

On the first round, I dove, head first, not knowing much about what it would do to me (though they did tell me as honestly as they could.) The second time, I waded in, testing the waters a bit, though I knew I’d eventually I’d have to make that dive. And I did.

But despite what some have written me, I am no hero.

My doctor is a hero. She has done the hard work of puzzle master, her fine mind taking my own curious circumstances — three kinds of breast cancer — to task, until she found the exact cocktail combination to cure me. Did you get that? CURE ME. Which she did.

My nurses are heroes. They greeted me and all the other cancer patients as if we were the only one in the room, day after day, caring for us when some get our walking papers, and when some don’t ever. They are gracious and loving and champions for all.

And then they let me go. Tuesday a week ago. Just like that.

I was a puddle. Honestly. After a quiet day in the chemo room I was looking for the marching band. A raised pom pom or two. But when that did not arrive, I looked to Hope, who had nursed me on my darkest day, probably, when I was the most homesick I had ever been in my adult world.

“I wish I could hug you,” I told her. “I will never forget your kindness to me.”

“You are gettin’ it!” she said, breaking all the rules of COVID and giving me a hug I had not had from anyone except my husband in too many months. It was tight. And we sobbed. And I felt healed.

Back at home, family had filled my kitchen with pink. Two dozen roses, one dozen from my birth family and mother, and the other from my family by my daughter’s marriage. “Welcome home from camp,” their card said. Tickled me pink.

When you have cancer and get through treatment, you pick your ‘cancervesary’ as a way to remember it. Could be the day you are diagnosed or the day you felt healed or the day, through surgery, when cancer took leave of your body. That day, the day cancer took leave of me, was one year ago today.

So I take today to celebrate. And on this day before Thanksgiving, to be thankful to God for all of you.

I also want to honor all those who have gone before me in this camp. Who carved their initials on the scaffolding and in the bathrooms and on the the sheetrock that holds so many of these camps in place. I don’t know your names, but all ya’ll have come before me and I thank you for your service and your commitment to allowing doctors to study the disease in you, so that I might live. I honor hundreds of thousands of you, some of whom aren’t here any more, but so many of us are here and leaving our cancer days behind because of you.

I will not forget that.

Now back to the pile sitting in the picture at the beginning of this post. Thank you all for your letters and your love and for not letting go of me when I was taking the swim test at camp. I survived because of you, too, and I’m forever grateful that you cheered me on as I made it, finally, to the other side.

Much love,

Sooze

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.

Chemo Camp — home at last

Well, my mother wasn’t able to drive the station wagon to pick me up, but there was a moment when an Explorer the same color as my father had did pause for a few seconds today when my friend since 8th grade Anne Boone and I were sharing lunch at Snoopy’s. Hot dogs and fries— we didn’t share the fries but had our own… both of us having earned it in all these weeks of praying and worrying and trusting. Though I felt for sure that Daddy was sharing the dog with me.

Today was the first of a series of small lasts, but this actually was a big one. The LAST CHEMO. I still have treatment to go and have much to say but no energy to say it, just now, so I’ll just post this picture. Thank you to God and to all of of those who went before me to make sure, through research, that I made it to THIS DAY. And thank you to all who have been part of my captivity, cheering me on and sending cards and gifts and praying and making meals and all the things that we all know how to do when someone is in need. All will be well, and soon.

More to come, I hope tomorrow.

Today was the first of a series of small lasts, but this actually was a big one. The LAST CHEMO. I still have treatment to go and have much to say but no energy to say it, just now, so I’ll just post this picture.

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. 

Chemo Camp: Cut, then Come Again

My friends have been filling my house with flowers these past weeks. Bright zinnias and black-eye Susans from their gardens, pink roses and white hydrangeas for the hall table. As they fade I remove the dying and combine the living, creating new arrangements for new places in the house. 

I love bringing the outside in on these hot days of late summer, when very little grows in my yard at all. My mother did this all of my childhood, cutting flowers from her garden patch and setting them on the kitchen table, in the family room, beside the bed when we would visit.

At 91, she still keeps a small garden in the back of her patio home filled with plants she moved from home. Large pink peonies grace her kitchen table in the spring, and in summer, shasta daisies crop up on the kitchen counter. She can throw a Gerbera daisy from the grocery store into a corner of the garden and it will bloom all summer. 

She tried to give me mint she’d dug up from the back yard at home, but it died in my care. Iris bulbs? The same. But her little corner garden bursts with color, as it has all my life.

I love fresh cut flowers, too, but in recent years I’ve had very little luck in growing them. The peonies that pop in spring in my back yard my mother gave me as bulbs. They took years to bloom yet have somehow survived — and thrived — on my own benign neglect. My husband and I have over the years tried to fill our borders with perennials that require little care, but the voles and rabbits keep feasting on them. So we plant, they feast and we replace.

Just after my diagnosis this spring, I found some zinnia seeds I’d bought, maybe last year? I can’t remember. The kids and I used to plant a cutting garden along the side of the house each spring that actually grew into something, but that project fell by the wayside over the years. Each year I’d buy seeds and daffodil bulbs in bulk but the best I could do, it seems, was to plant a tomato plant or two and fill my porch pots with caladiums.

But I found these seeds. Looking at them and thinking what lay ahead of me, I wanted desperately to put something in the ground that would soon pop up its head and grow into something tall and beautiful. I can’t explain it, really, but despite the fact that it was pretty late in the growing season, I handed it over to my newly-retired and resident gardener, and he didn’t look at me like I was crazy. 

Instead, he set to work, scattering the seeds between the tomato plants I’d not quite successfully plugged in the ground and the leaves of my spent peonies.

Over the weeks, he watered and mulched, weeded and trimmed, even going way into the back yard to the abandoned compost pile he’d forgotten years before. I’d come home from work, and he’d be out there shoveling and watering (our water bill was more than $200 last month) working with this tiny plot.

Within a week, he’d coaxed the seeds to bloom, and so, in time, I picked a few and brought them into the house, bringing new life into this place where my own is being zapped out of me, bit by bit.

Then came my birthday, and let me tell you it was a virtual florist in my house. I must have had a half dozen arrangements scattered around the house — from the Farmer’s Market, from gardens around, a couple from the florist and one from the church altar. It was glorious, all the summer color splattered everywhere. 

And then I went to the doctor for chemo. 

My white count was low, they said, so they gave me a week off. I didn’t want that, mind you. Chemotherapy is not something you look forward to until you can’t have it. One week off is another added on to the end of treatment. So they began to question why. As they looked at my diet and my resting and my working and everything else you have to consider when you are in the middle of treatment, one of the nurses asked, as an aside: Do you have any live plants in the house? Any flowers?

It had been my birthday, I told her. And though I usually don’t get flowers even from the husband on the birthday, yes, I did have, well, a few. 

Get them out, she said. 

Why? I asked.

The spores, she said. They cause infection, she said. Which can land somebody like me in the hospital, she said. Which would be bad. Very bad.

All that beauty. All the love people had showered me with in bringing life into my house. Just a few flowers, really, but something growing and beautiful and hopeful right at the very moment when I needed it. That hope.

I handed the vases to my husband, one by one, and told him to toss them. And I hated it.

In the early mornings since, I walk outside to my zinnia bed, eyeing it with love and with trepidation. I don’t think I’ll look at fresh cut flowers the same way, ever again.

Zinnias are my favorite summer flower. The hydrangeas have rusted, the bachelor’s buttons have long-since dried up and roses, well, I’ve never been able to grow them. But zinnias? You toss the seeds and almost from nothing they pop their heads up, and the more you cut them, the more they come back. 

Each morning my husband tends our small spray of flowers as if it were an acre, snipping and mulching and musing over them like he did the children when they lived under our roof. She’ll be back, I can imagine him telling them, a reminder for himself, too, on those days lately, when neither of us wants to spend time with me. 

Yes, I will be back, but it will be awhile yet. Christmas, they tell me now, before all is well and good again. The zinnias — and all my garden flowers — will be long gone.

But here’s the thing about flowers. Some, if left to themselves, will dry and reseed without my having to do anything to help them. 

I’m counting on that. For my tiny zinnia garden and for myself. New growth, come spring, for all of us.

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.