It’s been a week of boobs and bravery on the move (and I don’t mean the supreme court, which I have other names for rather than slang for an often beloved part of our bodies), all as a consequence of me having had breast cancer and harboring the BRCA 1 genetic mutation. Part and parcel of unfortunately passing this genetic anomaly led us to Minneapolis this last week to support our daughter through her second breast cancer prevention surgery.
Natalie made the courageous decision to have a double mastectomy rather than face what’s likely more than a 90% chance of developing breast cancer. It’s been harrowing to watch her pain and fear while going through several cancer scares already (including one just before Thanksgiving when she had to wait a week after a biopsy to find out she was okay). What a brave 30-year-old she is for taking such a leap, entailed big surgery, subsequent pain and limited movement, six weeks of deep recovery, and now, four months later, a second surgery with much of the same although easier. Thanks to good genetic counseling and her own wise heart, not to mention what she witnessed me going through with multiple surgeries and aggressive chemo, she was able to make her own best informed decision.
She comes from a line of women spanning three generations who have also had to make such decisions. Five of us have had mastectomies, three of us because we had breast cancer (some more than once), and two to prevent getting such a diagnosis. It’s a strange legacy to be living, but here we are and here we’ve been, sometimes passing around our silicon boobs around at family visits to assess the weight and droop so that we can find what works best for us. We’ve also shared stories of the pump-you-up process of inflators followed by swapping those out for implants.
We fear for the next generation, not knowing who will end up with the cancer card in their genetic testing. For those of us who do possess that card, there’s screenings and blood work, careful monitoring of related cancer risks, and passing around whatever article we come across about new breakthroughs in surveillance and prevention.
Our bodies and psyches are geniuses are adaptation, something I know down to the bone. Not having breasts is truly no big deal to me anymore, 19 years after my double mastectomy. As wrote about in my memoir, The Sky Begins At My Feet, each morning I put on my glasses, when my prostheses, which spent the night cozily sleeping in my mastectomy bra. It’s not heroic or extraordinary, just the old normal.
Yet there are some unintended opportunities born of all this. Right before we left for the long drive up north, I got a new pair of prostheses in the mail and consequently mailed off my old pair to a young trans friend, who otherwise wouldn’t have any medical insurance to buy a good pair of expensive prostheses.
There’s also the strength and beauty I see in my daughter’s face, sitting up in her bed the day after surgery and the morning after being awake all night and sick as a dog from the meds (yes, this is a photo of her just then). There’s the deeper understanding of life and health, even for the fortunate with good medical insurance and loving support systems, as she walks outside with us, ten minutes up the block and around the corner as instructed by her surgeon. Each steps takes perseverance and a willingness to feel pain on her way to healing fully.
Each step and each choice sing of hard-won autonomy, a word that became even more precious and vivid to us the day after her surgery when the Supreme Court decision crashed so many of us into anguish. But when I look into Natalie’s face and the faces of so many of her generation, I see a fierce hope rising.
“I’m here for my monogram,” a silver-haired woman told the receptionist. “Yes, your mammogram,” the receptionist answered without missing a beat. Obviously, she had heard such variations before, and this is the way of Scan Land, where many — if not all of us — go every so often to make sure there’s nothing anxious or life-threatening growing, or growing too much, on our insides.
Yesterday, I returned to Scan Land for my quarterly CT scan or MRI to ensure that no micrometastases from my ocular melanoma were taking up residence in my liver or lungs. “How many of these have we done so far?” Ken asked me yesterday as we sat in the waiting room, me sipping the iodine water necessary for my CAT scan. I counted on my fingers: at least nine quarterly scans, and that doesn’t count the dozens of eye ultrasounds (amazing how you can get used to a tiny device moving back and forth on your eyeball) and another kind of scan that entails staring deep into a machine to watch the fires of Mordor.
I’ve made many excursions to Scan Land since 2002 when I was first diagnosed with breast cancer. Because I’m a carrier of the BRCA 1 genetic mutation (which increases risk for breast, ovarian, and other cancers) and because my dad and uncle died of pancreatic cancer, I was going annually for a CAT scan or MRI for years. With the scans related to the more recent cancer, if I could earn frequent flyer miles for all the hours I’ve spent in Scan Land, I could circle the globe.
To be honest, the scans aren’t painful, and because I’ve struggled with tight-spaces anxiety, they sure aren’t boring. But thanks to work with my therapist, meditation, medication, and if it’s a closed MRI, serious drugs, I’ve been able to get through them. That said, I’ve also experienced some of my worst panic attacks lying on a platform going in and out of a machine. I’ll never forget the 45-minute-long PET scan in a traveling scan-mobile parked outside the hospital which I hyperventilated and cried through before slowing my breath enough to see myself wandering a desert for a long night, searching for some sense of peace while reminding myself that this big, bad machine wasn’t going to hurt me.
I’ve worked through a lot of my scan issues, and yesterday, I did my first scan without any medication, and although I started to feel that rushing fight-or-flight sensation in my stomach, I remembered to breathe and listen to the song (Christina Perri’s “A Thousand Years” — even if it’s from a vampire movie) I always play on my ear buds. So now I’m mostly left with the end point for all who visit Scan Land: the results.
No matter what the results are, they are always extraordinary: good (thank heavens!), bad (Oh my God!) or ambiguous (Oh no!). We inhabits of the waiting rooms — before the scan and before the doctor’s visit to tell us the results — aren’t a cheery bunch for the most part, most of us somewhere between scared, hopeful, numb, resigned, sad, distracted, and freaked out. Waiting for the results is often the worst part of wrangling with cancer and other life-smashing illnesses.
Some doctors use the I’ll-call-you-if-it’s-fine-but-you-have-to-come-in-if-it’s-not approach, which makes for a terrifying drive to the doctor’s office, knowing bad news, possibly life-shortening, is about to assault us. Luckily, my oncologist has a better way: I have my scan in the morning, then go to her office at 1 p.m. no matter the results, which gives the worst of my imaginative capacities little time to get too riled up. Still, I usually have a twinge.
Then again, scans have saved my life more than once. A mammogram caught my breast cancer early enough that I could survive it. A constellation of eye and other scans led me to treatment in June of 2019 that so far (and continuing for many years to come, I hope, I hope, I hope) saved me. Yesterday was another clear scan, and once again I’m overwhelmingly grateful for my short trek in and out of this big donut-hole-shaped machine.
I remember years ago at my oncologist’s office seeing two women — one middle-aged and one older, a mother and daughter — walk in the door clutching each other and sobbing. They were sure they were there for bad news, and it was hard for them to answer the receptionist’s questions as she checked them in. Eventually, they were called back to meet with the doctor as was I. When I was checking out, they were too, and this time they were crying for a different reason. They had gotten good news, and they were so overcome with relief and joy that they couldn’t stop weeping. I had gotten good results too that day, a good day in Scan Land for us all.
When I had breast cancer 17 years ago, I learned some things about resilience, the ability to bounce back. There’s nothing like being thrown off a bucking bronco to discover that yes, you can hit the ground, hard, and yes, you can hobble back to your feet and strength. There’s also nothing like community and all the love that made me upright again, then fed me homemade soup at regular intervals.
In 2002, I discovered I had breast cancer, lymph node involvement, and also the BRCA 1 genetic mutation — which increases the risk of breast cancer, ovarian cancer, and other cancers (even melanomas, like what I now have). There were three big surgeries, akin to holding onto a mechanical bull in the middle of a tornado, surrendering to the anesthesia, and waking up to nausea and clear skies. There were also months of chemo, mounting one unbroken pony after another with the certainty that I would be thrown off and I would throw up, and my white cells and mojo would plummet. I’d be overtaken by a numbing white sleeve of sleep at any moment interspersed with steroid-induced closet re-organization at 3 a.m. Ken, my family, friends, and big community love got me through, filled our refrigerator with blintzes and chocolate pudding for the six months of chemo, drove kids to and from piano lessons and hospital visits, brought me a TV and VCR (we had neither beforehand) so I could zone out on Steve Martin movies, and talked me through fear storms.
In the years since, I’ve understood that the cancer rodeo grabs hold of many of us as patients and just about all of us as people who love people with cancer. Having facilitated writing workshops for people with cancer and other serious illnesses at Turning Point in Kansas City for the last 17 years, I’ve also seen miraculous displays of grace: people who find the strength to open their hearts to life and make new meaning. From all of this, I’ve learned a few rodeo tricks and tips from the pros:
Generally, the hardest part is the excruciating limbo between “you have what sure seems like cancer” to a precise diagnosis and treatment plan.
New and mind-blowingly innovative medical treatments are coming to fruition all the time.
Energy healing and other forms of healing (whatever works for you) — acupuncture, massage, yoga, nutrition, walking with friends, laughing our asses off together — at best can spark startling revelations, and at worse, can dissolve incapacitating fear.
Denial is not a dirty word: it’s a necessary coping mechanism along with dimming the harsh lights of what’s likely ahead for us. We can’t live fully while carrying a backpack full of big rocks all the time.
Statistics are somewhat meaningless in the intimate space of being alive as a singular person connected to other people in the here and now. I’ve seen people with stage 4 cancers kvetching and sharing jokes 15 years out, and I’ve seen the opposite, too.
Cancer doesn’t change who we are; nor does treatment. I feared I wouldn’t still be myself on heavy doses of chemo, and yet I was totally still me, maybe even more so. Big dances with mortality reveal to us more of who we innately are, and that is a priceless gift of perspective.
There’s incredible good company at the cancer rodeo: people with the best senses of humor and get-up-and-go gumption because of close encounters with the life force. These are the best people you’ll ever meet or even be.
No one is immune to mortality.
Which leads me to now: some fuzzy vision in my right eye and a lot of blinking since March led me to an excellent ophthalmologist, Dr. Brown, who, after two hours of shining lights into my eyes while having me look right or left and taking various images, had to tell me there was definitely cancer there. My stomach plummeted, and I felt the floor fall away. The rest of the day included talking with my wonderful integrative physician, Dr. Sandal, and my fantastic oncologist, Dr. Soule, in between a lot of phone calls, numbness, loss of appetite (a rare thing for me), occasional freak-outs at what wild animals I would have to ride and fear over if I would get to the other side intact. I also petted my cat a lot.
Yesterday, Ken, my soul brother Ravi, and I went on an inner space mission to Dr. Desai, a superb ocular oncologist at St. Luke’s Hospital. Did you know they can do an ultrasound of your eyeball? I know that along with how contrast dye of the eye produces clear images and that if you subtract the shortest man in the world from the tallest, you get Shaq O’Neal (“Who Wants to Be a Millionaire?” was booming in the waiting room). The extreme possibilities were extremely dire, and while I won’t know for completely sure if the rest of my body is clear until after the PET scan and brain MRI, when Dr. Desai said it was a treatable melanoma, I burst out crying in relief.
What’s next is a tiny gold button full of radioactive pellets planted behind my eye before being removed five days later. Then, aside from potential and probable long-term side-effects and vigilant monitoring for the spread of micro-melanomas, I’m done with this rodeo, and maybe with the cancer rodeo circuit for good…..or not, which is a big reason all this can be so scary.
Now it’s time to ready myself for the rodeo and other metaphoric renderings of what’s ahead, knowing I will find a way through thanks to dedicated medical professionals, gifted healers, and especially my best-beloveds, particularly Ken, who gets to go with me yet again through a mess of tests and challenges. While I don’t own a pair of red cowgirl boots, I can barely ride a horse, and I can’t yodel to save my life, I can be brave enough to let all these people and procedures save my life. Then, probably sometime this summer, l’ll be on the other side with a more resilient spirit, more grateful heart, and maybe a cowboy hat too.
Thank you for reading this and being with me at the start of all this.
Today, I had the honor of giving a keynote note at the Days of Caring event in Hays, Kansas — a luncheon and fashion show to raise awareness about breast cancer. Here’s the talk I gave, drawing on my experiences and writing as well as what I’ve been witnessed to witness through facilitating writing workshops and being with community. Thanks to Juno Ogle, who chaired the event and invited me to participate, and the others who made this happen (Brenda, Andrea, Donna and everyone one else). P.S. I also got to mosey on the catwalk in my first fashion show ever. Thankfully, I didn’t trip.
Surviving With Gumption and Grace
Your Life is Your Life
Know this when you must lie
completely still on the steel table
while the glass plate presses down
on your chest. Your life
obviously your life. Dream it back
into your memory for when
the kool-aid-colored chemo
is pumped into the plastic port
in your clavicle. Tell yourself
this when the doctor comes in
to talk with you, carrying
a small box of tissues. Don’t
forget then how your life is
your life, not when the phone rings
at the wrong time, or the biopsy needle
inserted in your left breast shoots
its click near your heart. Your life beats
loud and often. Your life
surges against itself
in at least some cells so tell it
your life is your life
when you sit, naked from
the waist up on the examining table.
Your life there talking with
the pharmacist or here on the couch
is your life. Pick it up
and hold it close
especially when the wait
is long and the news is bad.
Tell your life what it is.
I wrote this poem in the middle of my cancer when I was learning a whole lot about a word I didn’t know at the time: sisu. This Finnish word with no English translation loosely means grit, bravery, guts, resilience, perseverance, in short, all the spirit and imaginative courage of the word gumption. Grace speaks to that illusive quality of aligning ourselves with the blessings and sacredness of life. Altogether, gumption and grace names for me what it means to make and re-make our lives out of the materials we’ve been given. In my case, and for many of you too, cancer is part of what we work with, and no wonder given that the latest statistics indicated that one out of three of us will face some form of cancer.
How to grow gumption and grace in our hearts, lives and communities? One of the big things I learned through cancer – having it, being with loved ones who survived or didn’t, and facilitating writing workshops for people with cancer for many years – is how much we need to steer by our own feet and flashlights through dark times. Advice from others is often over-rated, especially when you face big decisions. So for the sake of this talk, I’m going tell you my story, aiming toward what lessons I learned about grace and gumption, with the caveat that your life is your life.
Listen to Your Story
“Everything can be survived if it’s part of a story” goes an old Yiddish proverb. Our cancer tells its own tale as we live our own much-larger-than-just-cancer story, intermingled narratives that can’t help but change one another. I both expected breast cancer, given that my mom and aunt each had it twice, and didn’t until I was much older. But when I was 42 with three young children, the news landed in me and began changing how I understood being a body and woman, a change, as my oncologist Dr. Matthew Stein told me, would keep unfolding the rest of my life. Here is the beginning of that story from my memoir, The Sky Begins At Your Feet.
We were completely lost in the Flint Hills of Kansas, and I didn’t care. All we could see were the wide expanse of hills, sky, cows, and the occasional rock, skeleton of a windmill, or fragmented stones from pioneer homes. I stared out the front passenger side window, marveling at the lush green rising and falling all directions, hardly any power lines because there was so little for the lines to power. The land looked surely as it had appeared for hundreds, thousands of years. Tall grass sloped all over itself on what felt like the top of the world, and everywhere the wind conspired with the sun to make the grasses gleam. It felt like being at very high altitude, only instead of mountains, windmills.
Expansive as galaxies, the Flint Hills lay down all directions like long, lanky bodies rolling away from or toward each other. “The sky begins at your feet,” writes essayist Anne Herbert, and there’s nothing like wandering around the center of Kansas to prove this, and also to find out how easy it is to get lost in the sky.
Early this March morning, the sun illuminated the curves of the land and long shadows of trees and rocks in such a way that we let ourselves get lost without a second thought. My friends and my nine-year-old daughter and I were driving all over Chase County, looking for the ranch of a woman we were to visit for an event we were organizing the following fall. Now we were driving eight miles in the vibrant hills down the wrong road.
None of us spoke when we reached the dead-end. Instead, Joy just u-turned the car around, skimming some of the grass, and we headed back in the direction from which we came. We were all too taken with the sensation that this land went on forever….
I didn’t know that once we righted ourselves, found the woman we were to meet, delighted in driving all over the county for a few more hours, and eventually made our way home, I would begin another kind of trip. I didn’t know that while I was merrily lost, a technician from our local hospital’s mammography department was leaving a message on my answering machine that would lead to an old doctor, white-tufted and shaking his head, who would say, once he saw the mistletoe-shaped lump in my breast, “Yes, this looks very worrisome indeed.”
I just knew how alive I felt, and how the world seemed, at that moment of being lost, to be forming anew, which, it turned out, was also true.
I believe in those first glimpses as well as hard-won, long-term truths. In that first glimpse of being lost and alive, I saw something that would lead me: the beauty of the always-in-motion world, friends and community, land and sky. Within a short time, the wonder my big-picture wonder turned to fear and what many of us diagnosed with serious illness experience: a disconnect between the life we thought we were leading and the one that turned up, between who we saw ourselves as, and who we are at this moment. I wrote this poem, printed in Reading the Body, about that moment.
Not what you’d expect, not in this ordinary body:
the phone message on the machine that says,
“mammogram” and “irregular,” the technician’s voice
later who tells you there’s something
to look at, make sure, check, just in case.
Then it’s that moment alone in the bedroom,
the chair so large and forgiving, the panic
that suddenly seems extraterrestrial, the incessant
questions while the wait stretches its beginning
to meet you.
Until the second x-ray hangs on the lit box
singing out its small constellation of calcium, until the
surgeon’s receptionist touches your shoulder kindly
and nods, until you lie on a still table
while a nurse looks, shrugs just a little,
until that call, and those words which come
by the time you already know them, you
already know the walls of your body falling away,
this dropping down to your seat, to your notebook
where you write it down because you’re supposed to,
to your fingers looking so normal
as they hold the pen and paper, unfurling
this new script, this open page
of a body where, without moving an inch,
you’ve become a flesh-and-bones double
of who you always were – one who has cancer,
one who can’t believe it, and both of you
standing up, shaking the hand of the doctor,
walking out into widest sky you’ve ever seen.
I thought cancer would be quick and not interfere with my life too much – a lumpectomy, some radiation, and I’d be back in the saddle again as if nothing has changed but a little less boobage. But after my lumpectomy, the bad news kept getting worse. I had Stage 2 cancer with metastases in the lymph nodes under my left arm. When the word “chemo” was first mentioned, followed quickly by “oncologist,” I was terrified. I threw up easily and was very sensitive to medicine. Hell, I can’t even drink a beer without a migraine, so how could I possibly do chemo?
I reluctantly went to Dr. Stein, a compassionate and wise oncologist at Lawrence Memorial Hospital, with my husband and a lot of paper for note-taking After meeting for two hours, I was skeptical about chemo but in the face of statistics that mapped out a very shortened life without chemo, I agreed.
Chemo, like everything else, is not what we think. I could still work as a teacher and workshop leader. I could still write, throw a frozen pizza in the oven for the kids, and watch chick flicks while guzzling iced water. I was, and this is what surprised me most during the six months I did a rather aggressive regime of chemo, still me, not erased by my treatment, just dampened down. Sure, there was discomfort, pain, fear storms that blew in from seemingly nowhere like dust storms that covered everything, lots of doctors appointments, impressive projective vomiting, a rush to the hospital with an infection, and all manner of side effects, which I compared in my memoir to a walk through the Princess Bride’s fire swamp. There were mouth sores, headaches, queasiness, blasts of steroid-induced cleaning spurs that left me listless the next day, and massive mood swings that could have been from chemo, temporary menopause chemo catalyzed, depression or all of the above.
There was also meals delivered by friends and family so regularly for six months that we had to beg people to bring less food, surprise guests from other periods of my life who wrapped me in love, strangers who carried my bags to the car and hugged me, my children and husband especially being there in ways that kept bringing me back to the real life, and a whole lot of humor, one of the most important ways I found to feel almost normal. Here’s another excerpt from The Sky Begins At Your Feet.
The Tattooed Lady
After my buzz cut, right after the second chemo treatment when my hair was supposed to fall out, it fell out in such slow motion that I started to look less like a Holocaust victim and more like a very confused duckling. That was when I called Courtney and Denise. Veterans of shaved heads, and lured also by the promise of spaghetti and meatballs, they came right over.
While the pasta boiled, Denise shaved a checkerboard on my head, telling me it looked awesome. Courtney nodded, but Ken, walking in the door after a long day at work, told me I looked like a gang member. The kids trailing behind him just gaped at me.
I went to the mirror. White supremacist. Not really my look. So I asked Denise to shave it all off. Sometime after spaghetti and meatballs, with Courtney and Denise joking about my cool new look….I found my hand reaching for a pack of fake tattoos. Birds. All different kinds – cardinals, blue jays, eagles, owls. Some of the birds had wings outstretched, mid-flight, and others were perched. The tattoos were my nine-year-old daughter Natalie’s, and neither she nor I could remember where she got them.
Tattoos. Bald head. A flash of electricity jumped between them. I knew what I had to do.
I put a cardinal right over my left eye, a goose over my right, and the others became part of the garland around my head. Flight. Wings. Color. Beauty. They just seemed to belong there.
When I came back to the table, where Forest, was passing out ice cream bars, he started giggling. “Are those permanent?” Daniel, aged 12, asked.
“Oh my god,” said Natalie, but she was smiling. “Mom, you’ve got freaking birds on your head!”
The tattoos were indeed temporary, and within a week, my birds started to tatter, but I found a toy store that carried temporary tattoos….It became a ritual: Once I week, I would shave my head smooth of the nubs that had started to erupt, and then carefully, with a wet washcloth, apply a circle of mammals, amphibians, butterflies, or sometimes flowers. The ring of flora or fauna lightened up the chemo for the kids and for me and took the bald edge off my life. Once, as I lifted a bag of groceries, a woman called out, “Hey, I like your fishies.”
I turned and looked at her, trying to smile as I said, “They’re whales.”
I walked into the hall of Forest’s elementary school where some kindergartens stared at my head, so I bent down.
“Wow! Dogs,” one said.
“That one looks like our puppy,” said another.
For a chemo appointment, I wore flowers, small delicate pansies, daisies, and roses. For a taco dinner at Ken’s parents’ house, I sported small woodland creatures, a fox over my third eye. For getting the oil in the car changed, I wore wolves….
One day, when a teacher saw my bald head as I picked Natalie up, he looked at my garland of galloping horses, and called out, “Hey, who did you lose a bet with?”
“God,” I answered.
But it turned out that at least God had a good sense of humor, and there was something about wearing a ringlet of kittens around my scalp that made chemo seem a lot less like a pact with the devil.
No pact, but a pack: the pack of people I come from who, it turned out, seemed like sure bets to have the BRCA genetic mutation for cancer – breast cancer widespread, pancreatic cancer that killed or would kill my dad and his brother. When my genetic test came back, I was positive for BRCA 1, and so had some big, or rather, size B-cup decisions to make about whether to have my breasts, ovaries and uterus removed. With an 87% chance of recurrent breast cancer and a 44% chance of ovarian cancer, I decided, with ample support from many nurses, my oncologist and surgeons, and most of all, Ken, family and friend, to let it all go. From Reading the Body:
The day after they cut my breasts off,
just home from the hospital, not even
napping or talking on the phone yet,
that day, I walked on my own two legs
down the dirt road over the slope
of loose rocks, cradling, as I walked,
the broken body, the large orange handled
clippers, the big wind holding me,
the man I loved behind me getting ready
to start his car to come get me,
that day beginning the healing
from all of it – unslashed
from the expectation of what knife or infusion
was the day I made my way to my mother-in-law’s
old-fashioned dark purple lilac, and reached against
the tightness of gauze and paper tape, against
the odd sensation of parts removed and scars
just making themselves, against my sore arms reaching
toward their old strength
to gather and hold,
to cut and cut and cut
all I could fill my arms with,
all the dark purple alive with death and
birth, loss and blossom, and the white ones too.
My arms filling with the explosion of lilac,
my life filling with wind and weight of branches,
all of it against, upon, my open chest,
all of it ready to be carried
into the next life
that starts right now.
After 14 months of chemo, three major surgeries and a few minor ones, dozens of casseroles delivered with love, countless long talks with my husband about every angle of this journey, three surgeons, one oncologist, and a bevy of holy nurses, I was done. “Am I cured?” I asked Dr. Stein. “We won’t know for sure for five years,” he answered, and when it comes to mortality, we’re never completely cured, yet hanging out with it catalyzes many responses. Here is what I wrote about my one-year anniversary in The Sky Begins At Your Feet:
Happy Anniversary, Darling!
Anniversaries are major deals for survivors, and often the way we introduce ourselves to doctors, support groups, and other survivors….it seems like something that would fit well on a stick-on name tag, yet it carries the weight of healing and defiance, hope and fear, the future and the past….
Still, I cling to my (cancer) anniversary date, March 21st, the spring Equinox, as another fence post I’ve reached in my life’s wandering through the wide prairie lands – no path often present – of struggles and arrivals. Since my cancer treatment ended, two conflicting impulses have been released into my bloodstream: to hold tight to the wider view of life that cancer gave me, and to get as much done as possible, because who knows when I’ll die.
Let’s just say that, at first, the “get as much done as possible” gene was dominant, which isn’t so surprising given my history of packing my schedule to fill each pocket with something to do, my workaholic father, and my infatuation with starting new projects. I shot out of the cannon at high speed, adding to my life more administrative work related to my teaching job, and more writing projects, workshops, groups, and volunteer obligations.
But just like the earlier rise and fall from the chemo steroids, after flowing with this jet-stream for a while, I crashed into the ground, where I found my second impulse taking deeper root.
The second impulse led me to others’ stories, the veil gone as they spoke and wrote about what mattered most in the writing workshops I started first at various hospitals before settling into regular writing retreats at Turning Point: The Center for Hope and Healing in Kansas City. From The Sky Begins At Your Feet, here is one of those sessions, incidentally, on my third anniversary:
I look at the square table surrounded by seven faces, and remember that the group last year had 12. Gone is an elegant retired nurse and lover of piloting planes, who came last spring wearing beautiful pink sweaters and accented scarves, saving her energy all day from her breast-to-liver metastasized cancer for a chance to write stories about her life. Gone is the young mother of two small boys who had been told she was probably going to be okay only to find….she had a particularly aggressive kind of cancer that moved at lightning speed all through her organs. Gone is the woman who gave other members tremendously wry and wise support while she was caught in extensive treatment for rectal cancer. “I’m just a pain in the ass,” she reminded us, months before her death.
We spend a lot of time in these groups laughing and crying….Often, just introducing ourselves brings tears of relief – here, people can write about whatever they want without having to protect loved ones. Those tears also come from the caregivers, who feel that monumental pressure to hold up the other, to put their fear and dread on a shelf so they can get in the kitchen and cook up something good to eat, feed the life that feeds them.
But it’s the laughter that stays with me – the jokes about “You look great!” and the comebacks of, “What do you mean? That I usually look like shit?” The way Katie begins one of her poems with, “Don’t give me that look, that look that says I have Rumsey Funeral Home on speed dial.” The cracks about how sexy we look without boobs or hair….wearing compression sleeves or carrying our canes.
When I get home one summer night, Ken asks, “Doesn’t it hit on all your own cancer issues to do this work?” He thinks it might depress me, but no, it does the opposite.
I think of Linda, a writer and photographer who has been taking my Kansas City workshop throughout her late-stage ovarian cancer. Last week, Sue said to her, “You know, my breast cancer was caught early, and it’s nothing compared to what you have. When I’m with you, I feel like I’m really okay.”
“I’m glad my dying makes you feel better,” Linda said with a straight face, her page boy wig distinguished, as she catapulted us all into the kind of laughter that takes your breath away.
Maybe my ease has to do with how Linda’s dying helps me cultivate perspective, give up sweating the small stuff so much (by the way, it’s 12 years later, and Linda’s still alive). But I suspect it has more to do with the courage I witness, week after week, in all the workshops I do: the way that people are willing to take great risks in the stories they write and tell; how the veneer of what we think keeps us safe is gone in such workshops. What really matters is unearthing meaning, clearing the obstacles out of the way, including fear and doubt, insecurity and low confidence, to feel more alive in the process of creation.
It also has something to do with the stories I hear and the stories I witness. The man who reads a poem he wrote to his wife, who just finished breast cancer treatment, about how strong she is, crying throughout his reading while reminding us, “Hey, I’m an engineer! I never cry, and in this workshop, I can’t stop.”
I remember Linda’s words, “I don’t believe we were writing toward specific endings. They just happened serendipitously and wonderfully.” She reads me one of her favorite endings, “Every fiber of me begs to wake up—to wake up, electric, stunned, and newly alive.”
It’s everything Linda says, that new life available at any given moment for the looking. The faint breeze that comes through us as we get ready to leave one place and land in another. All the time.
At the same time, I realize that who gets to live through cancer has nothing to do with personal goodness. I see women who have similar diagnoses to mine face recurrence or sudden death. While treatment choices, lifestyle, diet and attitude certainly weigh in on mortality, cancer is also so catalyzed by a complex web of what we know and what’s beyond our knowing. A spin of the dice as to why Marla survives stage four breast cancer for five years, and why Edie endures three recurrences of what was supposed to be caught early and easy to treat. So often cancer has nothing to do with character, fairness, risk or daring.
Given the poisons infused in the soil, water and air, in our bodies and the bodies, stems, trunks and cores of other species, all I know is how much humans are not exempt from the earth. Some of us have a little more of the canary in the mineshaft in us than others, but we’re all in the mineshaft together.
We live in a dangerous world. We live in a beautiful world. What is essential in our stories can save us from and for something, but often we have to wrestle with the story to find such treasure. Throughout my chemo, I told myself the story of Jacob and the angle from the old testament. Jacob didn’t just wrestle with the angel until he was freed but until he could exact a blessing from that angel. Each chemo treatment, I told myself, thanks to good advice from a healer and friend, to take it all in deeply, then not release it until my body received the blessing of bad cells dying so good ones could flourish. After treatment, I realized that wrestling with challenges to find the blessing isn’t a bad way to dance with gumption and grace. We can puzzle out with what comes enough blessing to transform trauma, loss, pain and uncertainty into whatever meaning there is for us.
Looking for meaning entails getting cozy with where and who we are, including our interior weather, which can change on a dime, especially during moments of great compression where mortality is more than an abstraction. We might feel numbness, disconnection, even denial, which can be a mighty helpful tool when letting the floodgates open would drown us or we just need to take a break from the pain, terror, or confusion.Whatever comes, the last thing we need to pepper it with is shame for what we feel. I’ve seen so many people, including myself, needing to go through momentary pity parties and hate-the-world bouts, and while we can likely agree this isn’t a good place to live, I believe part of growing our gumption and finding grace is not avoiding our own souls.
In the middle of my treatment, I saw a bumper sticker that said, “Oh no! Not another learning opportunity!” “Oh no” is right as well as “oh, well.” Each moment, each project, each relationship, each life has its own calling – something we can engage in to bring this to its highest manifestation. The lessons are in having a conversation with the callings.
My cancer told me, in billboard-sized lettering, to take better care of myself, extend my awareness well behind my frontal lobe to encompass my whole body, and love that body even if cultivating this love is life-long and more prone to show itself in glimpses. I learned not just about my own resilience, but about the resilience of my family and community, and how it was a gift to me to accept help as well as a gift to those who give it. I’m still learning how vulnerable, fragile, strong, and surprising I am, how I’m not always who I thought I would be, and neither is anyone else. I have the rest of my life to study how to be fully human and alive, to notice the great beauty and power all around me possible in love and care.
What astonishes me is the courage we’re all capable of, not just to endure chemo, radiation, surgery, and losses, but to continually discover more of what the world in around and within us. John Willison had paratoid cancer, slow-moving as a lonely and overloaded freight train, he once told me. In the Turning Point writing workshops he attended for six years, sharing writing of such magic and exactness in naming what is that everyone in the group would routinely lean forward and smile when it was his turn to read. As he was dying, a friend as well as a workshop participant by then, I worked with him to publish his first and last book of poems, I Have My Home in Two Worlds. Here is an excerpt from one of his poems about loving whatever comes – feeling what you feel, and embracing the lesson:
Reasons to Love Grief
You should love grief, because, chastened so,
when it goes out, if it goes out at all,
into the assault of the world,
it’s under cloak and veil, too ashamed,
too raw to reveal itself, all rag and bone.
Love grief, because there are moments when
it decides to go some distance away –
to a lonely cabin by the lake, which it considers
jumping into because it’s always wondered
what it would be like to drown.
You should love grief because it isn’t itself anymore.
It goes out to bars, drinks all night, hurls insults,
gets into fights and comes home, all cut and bruise.
Love grief because when it looks in the mirror,
it does not see itself reflected back.
It has been hollowed and emptied out
and simply wants to drop down
into the stone cold ground.
You should love grief because it is a lost girl,
abandoned by those who should have loved her.
Even her friends just chit and chat,
talking about their next meal,
getting their fill of the world
while sitting next to them,
there is someone starving.
It is all that, but it is also this:
the tenderest thing just a tear away
from breaking wholly open,
letting the deepest love it has ever experienced
come spilling out.
And love your grief because
if not you, who then.
When it comes to serious illness or any of the ways life can kick us when we’re down, it’s especially hard to stand back up so no wonder there’s a lot of talk of cultivating resilience – the ability to bounce or bend instead of crash-land and break. I think feeling what you feel – discovering more about who you are through what life gives you – is the other side of finding our resilience. We see how low we can go and how, against the odds, we get out of bed, stumble toward the kitchen, and pour ourselves a cup of lukewarm coffee, each day beginning again.
At the same time, there is this: this moment, right now tumbling into autumn around us as the fields yellow and grasses redden. Right now in this room lit by the faces of those who know surviving might come breath by breath, but thriving comes by being with those who have eyes to see and hearts and to hear. Which also speaks to how we can’t often sustain gumption or grace without community, family, friends, a circle of people who really “get” us, witness our story, invite us into theirs, and share the wealth of our collective courage, insight, and examples. Listening to one another enhances our ability to hear ourselves, to see our own story as part of the unfolding mosaic of our days and lives. In The Little Prince, Antoine de Saint-Exupéry writes, “And now here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye.” Julie Cowdin, a participant in both my Turning Point and Lawrence Memorial Hospital writing workshops, wrote this poem, published in My Tree Called Life:
To Other Survivors
I am never alone.
You heard the words, “You have cancer” before I did.
I am never alone
You were afraid before I was.
I am never alone.
You cried rivers before I did.
I am never alone.
You once had poison running through your veins.
I am never alone.
You were bald once too.
I am never alone.
You’ve had the same surgeries.
I am never alone.
You tried to soothe your burning flesh.
I am never alone.
You were beautiful, gracious, living survivors before I was.
Survival often gets confused with heroism as if not surviving cancer means failure when in my book at least, it’s what we do with our lives that lifts us and others around up. Julie’s cancer returned, and she died, leaving behind young children and a loving husband as well as her writing and humor – she often called herself the Edgar Allan Poe of our writing workshops. In her words about how we’re never alone, we can also look around right now and see in each other, look within and see in ourselves, our love we carry all of our days for those now gone. We can carry that love into our work and play, art and solitude, dreams and understandings. As anyone who’s suffered a big loss knows, the relationship doesn’t end with death; it continues on over time, a conversation in and with our souls even if the one gone doesn’t speak up enough to hear what he or she is saying most of the time. Memories bubble up through the surface or flow down from the heavens, bringing ache and yearning as well as sweetness.
I watched and loved a great many people – my dad, my stepdad, numerous people in the writing groups I lead, and most recently, a dear friend – die from cancer, and what I found is how important it is to be present with and listen deeply to those we care about, no matter the situation. Going on in the cloud of big losses calls on us, perhaps even more than the daily challenges of cancer treatment or its aftermath, to grow our gumption and grace. That is how we wrestle with the angel to honor the memory, find the blessing, and keep on going. That is how we open ourselves to the beauty of the world as it’s happening. That’s what makes us weak and strong at the same time.
We carry our stories and losses, our triumphs and heartbreaks, our pasts and futures in our every step. Doing so with gumption and grace points us toward the fierceness of embodying how our lives are our lives, yet softening and opening our hearts to chat regularly with our purpose and callings, and embrace our people, the ones gone, the ones still here, the ones to come.
All that year of cancer and surgeries,
of my father’s cancer and death as I held
his knee, of his chemo and mine,
long waits for injections or test results,
I dreamt of bridges – large suspension bridges
I had to scale with my hands or climb over
gingerly with trembling legs.
Slim wooden slats stories above certain
rocks, and always a slat or two
missing in the high wind. Crossing
expansive spaces made of water
or shifting ground, junkyards or rivers,
untold distances to master.
Sometimes there were ways to stop climbing –
a phone call or a plane ticket, another needle
in my forearm, the gleaming ceiling of the
waiting room while the magazine spread itself
across my lap, telling me of other destinations.
Or there was the occasional fall as I sat on the bed,
the fear storming through me like shards
of nightmare, the reaching out for help
from that sensation of going under.
I do not have words big enough for how far I traveled.
I do not have language intimate enough
for how I arrived here, to the world more itself
than it ever was before, tender as the last breath
of my father, fierce as the woman
waking up again on the other side.
Please support my publishers! Get a copy of The Sky Begins At Your Feet at Ice Cube Press here, and you can pick up Reading the Body at the Raven Bookstore in Lawrence, KS, or by contacting me at firstname.lastname@example.org. John Willison’s book is here. You can also pick up a copy of My Tree Called Tree: Writing and Living With Serious Illness, which I edited, published by Turning Point: The Center for Hope and Healing here.
Lying in bed last night, I remembered: March 21, 2002 — the day I discovered I had breast cancer, a moment I swore I would always remember with great precision. But the 10-year anniversary of that date passed without even a glimpse of memory. What was I doing on the 21st? Thinking about how it was the equinox, I had a big trip to Western Kansas ahead and a lot to do before I left, and oh, the dog was (and is) so beautiful. I was thinking about how crazily ahead of time all the flowers and blossoming trees are, whether I could cajole my old van to keep moving for another year without massive repair bills, and how good some meatballs might be for dinner. I was probably thinking about how the boys don’t do the dishes without prodding and hardly ever do a good job, and also, they eat everything in sight.
But cancer? It didn’t cross my mind.
The day of my biopsy was the day I found out although the doctor didn’t officially say, “You have cancer” until March 22, 2002. When that strange machine made its loud click against my left breast, my mind clicked along with it. I had cancer. Most likely. Probably. This was reinforced by the nurse confessing to Ken that the constellation of cells in the x-ray was classic breast cancer. It was a Thursday, beautiful out, and we set off for home to wait until Friday for the official word. Although we knew, we told ourselves and each other maybe it wasn’t cancer. Then we waited. A phone call with an answer would be no answer. A phone call telling us to come in for an appointment would be cancer. March 21 was the hardest day of the whole cancer experience for me, harder than three major surgeries, the loss of body parts, six months of chemo and diagnosis of BRCA 1 (breast cancer genetic mutation).
That Friday morning, sitting at my desk, which was a different desk then and in the basement, the phone call came. An appointment. In an hour. “Then it’s cancer?” I said to the nurse. “Yes,” she answered, “But you already knew that.”
The anniversaries for the first year, the second, and especially the fifth year (when I was deemed cured) were big affairs. I looked to them like birthdays, and each one passed through me with its gifts of life and freedom. Even last year, the ninth anniversary, I remembered, and told myself that in a year, it would be 10 years.
Now it’s past 10 years, and having moved onto a vital picture of life so encompassing that there wasn’t even room to remember, I’m amazed. And grateful, even and especially to have forgotten what I can never forget.