Category: Cancer

Boobs and Bravery on the Move: Everyday Magic, Day 1061

Boobs and Bravery on the Move: Everyday Magic, Day 1061

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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.

Cancer Anniversaries: Everyday Magic, Day 1056

Cancer Anniversaries: Everyday Magic, Day 1056

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Cancer is often measured in anniversaries and fruit. We survivors often report in with our years out from the cancer after our initial diagnosis, yet in diagnostic land, we speak of tumors as big as grapefruits or plums.

Today is my third anniversary of being diagnosed with eye cancer aka ocular melanoma, which made me wonder how many years I’ve survived breast cancer. Twenty, and I think it’s a good thing to not have remembered my March 22, 2002 anniversary until now.

“Ordinary people stuff — that’s what you want to get to,” Dr. Stein, my breast cancer oncologist, used to tell me when I was in the middle of intensive chemotherapy almost two decades ago. He meant getting awful colds, flat tires, and bad haircuts, the random annoyances of a life not coalesced around cancer. That includes winking at cancer anniversaries on my way to get some groceries or scrub my bathtub.

While it’s a cliche to say anything can happen, it’s also wind-blown and bone-deep true. My first cancer — a common variety that I was prone to get because of family history and genetics — didn’t teach me that as much as the most recent one — a rare cancer that no one seems to know a lot about except that it tends to be aggressive and needs to monitored for years, decades even.

While there are hundreds of varieties of cancers, let alone various stages and nuances, my experiences were a bit of a study in contrast. I was Stage 2a breast cancer, meaning it had slipped the chute of the tumor (less than the size of a pea) for the hinterlands of the lymph nodes. What followed was rollicking but clearly mapped despite the sudden diversions.

The story started with a mammogram, follow-up imaging, and biopsy, then a lumpectomy, which I thought would land me in short-term radiation and a quick recovery. I cried on the phone with Dr. Jew, my breast cancer surgeon, when she told me of the lymph node involvement, but she also assured me, “Now we’re going to pull you up by your bootstraps, and you’ll be fine.” That’s what we all want to hear with cancer: we’ll be fine, okay, still here for the foreseeable future. What followed? Chemo, a BRCA-1 diagnosis (meaning I had an extreme chance of recurrence and ovarian cancer), and a bunch of “omy” ending surgeries: hysterectomy, oophorectomy, double mastectomy. Although I experienced many manner of ailments and some dangers (a lot like crossing the Fire Swamp in The Princess Bride), I was fine once on the other side.

Three years ago today I sat in a small, dark examination room with Ken and my soul brother Ravi when an ocular oncologist told me — after an ultrasound of my eyeball and contrast dye scan that involved staring into the fires of Mordor — it was a melanoma, and it was large (thankfully, she didn’t give me a fruit analogy). She had earlier said it was either that or a brain tumor, to which I replied, “Let’s just root for the melanoma then.” The wait between that conversation and the actual diagnosis was one of the hardest hours of my life, my mind drowning in scenarios of not a lot of time left on this planet I love so much.

But this cancer, unlike my first one, was not mappable. My new oncologist as well as my therapist and other wise people told me adamantly not to google “ocular melanoma,” and they were right (something I discovered when I did google it one terrible night). There are something like 27 stages and the mortality rate is high, all of which changes the language of statistics and detailed staging to something more akin to impressionistic art (which is also how my right eye saw and continues to see the world). While I didn’t experience much pain in my breast cancer road trip, this was an odyssey to uncharted territory, plus the eyes are delicate creatures. Two surgeries — one to insert a gold disk with radioactive pellets, and one to remove the disk — were post-anaesthesia excruciating, especially in a migraine-prone woman. Light hurt and it still does on occasion.

Although today is my eye cancer anniversary, I’m not sure what that means because I’m not clear (especially when I look out my legally-blind but seeing-in-its-own-way right eye) on when I’m completely in the clear. That might have something to do with having CT scans or MRIs every season for at least ten years, each one assuring me that there’s no micro-metastases to liver or lungs, and each one another high-five with the universe that I’m okay. But I am okay, years after my ocular oncologist said “I promise you, are you going to be okay.”

What it is an anniversary of is gratitude and love. I’m so grateful for all the people who love me and who I love who were there and still are with me three years later. My friends and family who brought over Ritz crackers and chicken soup, sat ten feet away from me outside during the stretch when I was radioactive and hurting, listened late into the night (especially Ken, who was my real-time, all-the-time greatest supporter), and talked me down from trees of fear. I’m so grateful to be here and so in love with this life, right now full of teenage-sized leaves blowing hard on Cottonwood Mel, bright clouds and contrasting deep blue skies. It all reminds me how good life is, each day an anniversary of getting and being here.

My Friend Vaughn and the Walk to the House Down the Road: Everyday Magic, Day 1054

My Friend Vaughn and the Walk to the House Down the Road: Everyday Magic, Day 1054

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“Vaughn keeps talking about the house down the road,” Julie, his wife, told me just a few days before he died. I listened on the other end of the phone, looking out the window from my room at the Writers’ Colony at Dairy Hollow into the quickly-accumulating snow on the roof. I was hesitant to have come to Eureka Springs, Arkansas, not wanting to leave my dear friends Julie or Vaughn, but it also felt like the right thing to do although most of the regularly-scheduled things of our lives make little to no sense when death is imminent.

Vaughn I’ve known for so long I can’t remember when we met, but surely in the early 80s, and Julie became a fast beloved friend a dozen years ago when her adventure with Vaughn brought her to us. I thought I had a good sense of Vaughn, but I got to know him even better at the end of his life when he actively helped me write his obituary (you can read at this link) over hig last month in between talking through songs, poems, readings, and speakers for his Celebration of Life, which I had the honor of officiating Sat., March 26. The obituary and the service were long, winding, full of deep notes and soaring voices, wild stories and vast memories, just like Vaughn. Then again, any life, especially one lived with vibrant gusto, and admirable affection is a infinite unfolding.

Vaughn especially made big differences for many of us. Vaughn has changed my life, including in one small and one enormous way: red cowboy boots and the farm. When I was diagnosed with eye cancer, I wrote a pithy blog post about being back at the cancer rodeo, and all I needed now were a pair of red cowboy boots. “Then she shall have them,” Vaughn told Julie. Within a week, Vaughn and Julie were walking from their car to our house carrying a large box. They fit perfectly.

The farm, however, is something too big to fit anywhere although somehow it’s in our arms after being only in our hearts for years. When it became possible (although seemingly highly improbable) for us to purchase the land we’ve been trying to save for 35 years, it was Vaughn who gave us the guts and gumption to believe we could. He first brainstormed with us about building an ecological small housing development on part of the land, and when we all realized we had no idea how to actually do that, he was game to help us with financing. His willingness was a strong enough bridge that it led us to imaginative and sustainable financing beyond him. While we might have gotten there on our own, Vaughn’s passion for the people and land he loved sped us toward our destination in time for all the pieces to come together.

Vaughn’s death on March 17, shortly after I got home from Arkansas, brought relief, heartbreak, calm, beauty, and the big mystery of grief all together for many of us. He died in Julie’s arms with his his dear friend Danny and Julie’s wonderful daughter Becca around him. Shortly afterwards, Ken and I drove over as the full moon set to help prepare the body for his green burial. The room was full of calm, love, and peace, and being part of such sacred moments is surely one of the more important reasons we’re alive.

But in the time between his death and burial, I felt discombobulated and confused, uneasy and not really wherever I was supposed to be. I remembered how, when my dad died, the Colombian rabbi who got to know my dad told us that the time between death and burial was an immersion into limbo (one reason, he explained, Jews bury their dead so quickly). He added that we don’t officially become mourners until we lay the body to rest.

Saturday, when Vaughn’s friends and family lowered the biodegradable coffin into the living earth, then we did our burial ceremony, ending in filling in the grave, I realized we as well as Vaughn had made the journey to the house down the road. It’s lonely and little empty not to have him with us, but there’s so much to remember, including how I played John Prine’s “I Remember Everything” for him recently, and he said to make sure that was in the service also.

Here is the poem I wrote for him when I was at Dairy Hollow, right after speaking with Julie (and yes, the ending is a nod to the John Prine song). May we all find where we belong, and when it comes to our loved ones, carry what we remember into the house where we live now.

Walking To the House Down the Road

for Vaughn, 3/12/22

Of course it’s a house for you who loves

to build and rebuild the uninhabitable

into homes of music and good food.

Winter makes it harder, especially

when false spring turns to thunder snow

and sheet on a Sunday afternoon.

But leaving when blossoms clutch

the sky or when summer nights fill us

with lightning bugs and katydids

would be harder to leave behind

in this house of a life, each packed box

a decade overflowing of who you still are

and will always be even down the road.

A dog barks from the kitchen. The last

of the snow drops from the branches

while the steps to the last place you live

dampen in the sheen of old rain.

The birds come and go, whole flocks

of red-winged blackbirds, twisting

murmurations of starlings just

down the road from here

to where you’re going without

leaving this bed, with leaving this bed

like breath or time. But we can’t

say that, bear that now while you still

sleep or reach up to kiss again and

never enough. Love is a well

with no bottom, a weathervane

in the wind, an oak so heavy

with yesterday’s snow that it can’t,

it has to, let go, but love is also

what makes it possible to let go.

The lights in the house down the road

are already on for you, the door already

just a little ajar, the road between there

and here made of gravel, watching, weather,

one story to step into after another,

each say saying, don’t go, each

answering, I love you, it’s okay,

we remember, we will remember

everything.

Love and Death in February: Everyday Magic, Day 1050

Love and Death in February: Everyday Magic, Day 1050

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“Maybe since January lasted for seven and a half years, February will be easy,” I said to my friend Kris. She was doubtful since February, for us and many others we know, tends to be the longest and hardest month. Never mind the 28 days of it, February is notorious for slipping the bonds of time dragging us into a morass of sadness and fatigue, dying and death.

So far so good, I told myself a week ago, but I rationalized too soon. In recent days, we got the news that one of our dearest friends is going on hospice, and the anticipatory grief and very current despair about the rapid meanness of his cancer trips me from laughing to crying on a dime, especially for wife who loves him so utterly. An old friend I haven’t seen in over a decade died suddenly two days ago. Ken’s wonderful dad died on Feb. 10th in 2009, and a year early, our good friend expert pie maker Weedle died on Feb. 12th.

That’s just us, and I know many close ones who have their own string of February impossible losses and big swaths of grief. It makes me wonder, if we have some say over when we give up the ghost, whether the bitter dregs of winter have anything to do with it. February also tends to be when the worst ice storms or blizzards hit, seemingly out of the blue, but maybe it just feels like that by this time of the year. It’s been cold too long, even with global warming and some surprise 60-degree days, yet spring seems far off.

February is the squeaky door that doesn’t close properly between love and grief in real time. It’s a time of year when I see up close how much deep and unconditional love we’re capable of, despite what we believe of ourselves. A friend just posted on Facebook how caring for her dying husband is stretching her to her seeming limit only to realize she can stretch further. Another friend texted me, “How do we bear the unbearable?” and then a photo of her beloved’s face full of joy as his childhood friend kissed him on the forehead.

We get through the unbearable together. We stretch ourselves in inconceivable ways. We stand on the threshold of February looking back and looking forward but mostly just looking at what we can see here. Like yesterday, while taking out the compost in the hard chill of the air, when I noticed the first crocus, papery and white, blowing hard in the wind but staying intact low to the ground. Like February, especially this year.

Listening to the Land With New Hearing: Everyday Magic, Day 1061

Listening to the Land With New Hearing: Everyday Magic, Day 1061

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Lying in bed this morning between layers of flannel with a purring kitty under the covers with me, I dreamed in and out of the call of a barred owl, seemingly on the other side of the window. Its call sounded different than the night time “who cooks for you?” call, more like a rooster cock-a-doodling up, then a cat purr-meowing down. Surely it was a hunting call, Ken said, and maybe the sudden absence of squirrels on the deck proved this.

I’m learning to listen to the land with new hearing. Since the eye cancer’s Rube Goldberg-esque antics of cancer leading to radiation in the face leading to extensive dental drilling leading to tinnitus, my hearing has been encased in a bubble of white noise. Sometimes, like lately as I recover from various insults to the sinuses (a cold, mold allergies), the hum-buzz-shush of sound is louder, and sometimes the volume is lowered.

But there’s always something, and I know tinnitus impacts so many of us and it’s not personal to me. Still, learning to hear in this new way is personal. It lets in sound at different volumes than in the past. Words people say are harder to grasp but background noise is amplified. I’m also more attuned to the sounds of the land: the chatter-scuffle-leaps of squirrels on the deck railing, the lift-up of starlings in the field, and the wind clanging what’s left of Cottonwood Mel’s leaves against branches.

I’m also listening to quiet, at least relative quiet (because the sound is never not there) more through my daily meditation when I give myself over to being in this cocoon of the noise of my brain (which is what tinnitus is — we lose some of what filters out that noise). In a strange way, it’s become a comforting sensation of being held in a gentle and constant rocking hush. Other times the pitch gets higher, and it’s just annoying, but I’m trying to befriend even that because it’s also reality.

Meanwhile, just as — to paraphrase e.e. cummings’ poem — the eyes of my eyes were opened in new ways, now the ears of my ears are opening. There’s a big world of wind and rain, cats and owls, and so much more to hear in this land. “Oh, the sounds of the earth are like music,” goes the beginning of one verse of Oklahoma’s “Oh What a Beautiful Morning!” So why not tune in and listen to what this music of the earth is telling us?