cymeeleanor

[cymeeleanor]

ERPR+

What agonizing mental torment to swim in: treatment or no treatment.

This is the biggest piece of dread for me in this tragic project. From the beginning, this all sucked. But even the surgery was something I took a deep breath about and took on. But this…this is unmanageable for me. I'm still in pain and handicapped from the surgery and now wrestling with this.

I am left with the decision of quality vs. quantity.

Fear and potential regret.

Poison in the form of hormone blockers in exchange for moving the needle 4%.

Not 40%, just 4%.

It will potentially buy me more time, but impaired and tortured time.

The anguish of trying to decide.

The same intuition that led me to the bilateral mastectomy says, “No,” to Tamoxifen. It says, “Wrong.”

Jeremy wrote me a love letter using my stats in the form of an infographic.

Not that the math is hard, but visuals are kind to my brain. My reoccurrence risk is 10%. I know some women would give anything to have my favorable numbers. Tamoxifen lowers risk by 40%.  So in my case it would drop that ten percent to six percent. That’s not a big budge for wrecking my quality of life (and that of those around me) as well as my health. This is a ten year treatment.

I haven’t met anyone who was okay on this drug. I’ve heard of women who are lucky enough to only suffer hot flashes and brain fog. They are like mythical creatures, unicorns out there somewhere. My PT gal has met two. The women I do know are not okay, they sob telling their stories of losing their jobs because of the cognitive side effects, being unable to walk with the joint pain and atrophy. The fatigue leaves them unable to get out of bed, it decimates their sex lives. Most of them end up having hysterectomies, they become suicidal. I researched and found it’s so difficult to take this drug that 35-56% of women stop taking it and roll the dice. Instead they chose to have a life worth living and risk cancer returning.

I decided not to move forward with the “standard treatment.”

Strangely, it feels like I didn’t have cancer until they took it away. That’s when the fear came. Did they get it all? Am I a ticking time bomb? Will it come back and how and where and when?

The looming fear of future me being told, “You have bone cancer,” is heavy.

I already lead a healthy lifestyle so turning down treatment may seem like I’m not doing anything productive and protective. Fuck, I got cancer on organic, physically fit, hippie habits. But there are researched alternatives for breast cancer suppression, from DIM to Green Tea Extract (yes, I have two oncologists). I literally removed all the breast tissue possible. It wasn’t in my lymph nodes. And studies show exercise reduces the risk of any type of cancer returning by three times, so I’m taking that up a notch.  

I’m left with the head space of wrestling with being at peace (stress is definitely not going to be helpful for my overall health). Any of us could be hit by a bus tomorrow. I’m searching deep and contemplating how to gently accept these gritty possibilities: I may not have as much time with my loved ones that I or they would prefer, or land in all the locales I want to travel to, make all the art I so desire to create. But isn’t it the case for all of us?

I have been given a solid gift of awareness of my mortality. You don't get that if you suffer a quick, untimely, accidental death. I want to continue to be hyperattentive and intentional. With this treatment, I would not be capable of being creative or grateful. If I forgo that treatment for all the reasons I already mentioned, I make space for other positive outcomes. My perspective has already been massively altered. I wish to be even more creatively productive and continue to envelop myself in this all-consuming gratitude. Everything is so poignant. 

Setting my intention to tuck into a relaxed, constructive life.

………………………………………………………………………….

Tamoxifen side effects: brain fog, urinary tract infections, hot flashes, suicidal ideation, loss of libido, nausea, weight gain, dry skin, depression, rashes, joint pain, hair loss, stomach pain, dizziness, fatigue, anxiety, permanent blurred vision, edema, stroke, cataracts, blood clots, bone loss, endometrial cancer, atrophy, liver problems, pelvic pain.

………………………………………………………………………….

Most of us have a dualistic notion of death as bad and birth as good. Chögyam Trungpa

[cymeeleanor]

For When People Ask

I want a word that means

okay and not okay,

more than that: a word that means

devastated and stunned with joy.

I want the word that says

I feel it all all at once.

The heart is not like a songbird

singing only one note at a time,

more like a Tuvan throat singer

able to sing both a drone

and simultaneously

two or three harmonics high above it—

a sound, the Tuvans say,

that gives the impression

of wind swirling among rocks.

The heart understands swirl,

how the churning of opposite feelings

weaves through us like an insistent breeze

leads us wordlessly deeper into ourselves,

blesses us with paradox

so we might walk more openly

into this world so rife with devastation,

this world so ripe with joy.

~Rosemerry Wahtola Trommer

[cymeeleanor]

How can this be the best thing that has ever happened to me?

I don’t really have a footing on reality yet. And that’s been a contemplation the last few days. The days have been blurred together. All the happenings outside of recovery are white noise.

When to integrate back into society, back into “real life” and how?

Yesterday, aside from the trips to Vail for appointments at the Cancer Center, was my first day out. Nothing felt real and I wasn’t grounded. Not necessarily bad, but not familiar. I felt a bit invisible, but a tad self conscious simultaneously.

The valley is absolutely gorgeous, all green and sunny with a little rain. While observing my favorite time of the year it occurred to me I can make this whatever I want. Reality is just our concept and interpretation anyhow. So why not make my reentry whatever I want it to be. Intentional and soft.

Immediately following my diagnosis, I unexpectedly slipped into a boldness I’ve never experienced. My best friend commented, “I like this Cyme.” Self-protection became essential vs the knee-jerk catering with kindness (even to the detriment of myself) as was the way a good girl navigated customarily. I probably learned this self-preservation as a little girl and it was reinforced by societal demands for a woman. But something broke in me and, “No,” came forth. A confidence without effort. Self-compassion wanted to dominate and the cliche “healthy boundaries” was born, and birthed with ease through this dreadful disease.

The world doesn’t have to be scary. I don’t have to dread reentry with my new self-respect and dignity protecting my periphery. I get to choose the theme song to my life as I ride these waves, it’s my response vs reaction. Smile and breathe.

Our life is shaped by the mind; we become what we think. The Dhammapada

Eleanor’s poppies

[cymeeleanor]

"I can, with one eye squinted,

take it all as a blessing."

- Flannery O'Connor

THE DREAM Marc Chagall (1939)

[cymeeleanor]

The pathology report is back.

My lymph nodes are clear and they removed the 14mm and 7mm tumors and confirmed the margins are clear from the left breast.

But this…They found cancer in my right breast as well. That's right. My “clean” breast, the breast that had been the unfortunate bystander, the collateral damage, suffering removal not because anything was wrong with it but because of my instinct, my reluctance to take the chance, to nervously watch it for years and hope cancer never showed up there. Well, it was there. Small (4mm), undetectable from the outside, just waiting to be found years from now when it got large enough to show up via imaging. Fuck me.

This is huge. It's been the elephant in the room. A few well-meaning hospital staff & friends were politely reminding me that the Big Double was not necessarily required. You know, there are less-invasive options.

Intuitively, I knew after years of watching them struggle with my mammograms, that doing a smaller surgery (that would have included radiation, that I now have avoided) and then just keeping a close eye on things, was ill-advised. All the imaging they had for me was from ABUS (ultrasound), which is what found my cancer in March. Following my diagnosis, my MRI offered no clear imaging either.  This all confirms my prudent decision that vigilant screening was not the safest way to proceed into the future. Not only did I not want to go through this again (I've witnessed many women deal with breast cancer recurrence), but I don’t think I’d have the bandwidth for another round. This has required so much effort emotionally and physically, not to mention financially, on not just me, but my precious family and loved ones.

It was a huge revelation from the doctor. It hit me harder than my original diagnosis. I cried out loud. "You made the right decision," she said, the tumor board was stunned. Can we all exhale together?

She also told me I will NOT need chemo!!!

Next week I meet with both my oncologists and begin hormone repression treatment to mitigate recurrence.

I’m so ready to crawl out of this fog of war. I want nothing more than to return to attentive Cy, able to tend not just receive. But I’m aware that I'm physically handicapped for six weeks of recovery from this surgery. And I’m determined to heal my heart and mind properly as I continue on this project with treatment. So tender as I go.

My paragon, my saint: Frida Kahlo

"At the end of the day, we can endure much more than we think we can." Frida Kahlo

[cymeeleanor]

I’m here, y’all, literally a little lighter.

And I’ve felt you all ♥️

I was removed from reality with my diagnosis. Stepping into surgery took that dream state to a whole new level.

The four-hour delay of surgery time gave the dizzying apprehension a surprising surrender of sorts. Waiting with all the methodically placed tubes and wires coming off me with a gorgeous view of the Vail mountains out my window gave no sense of it being an ordinary day, but I know for most people it probably was.

Looking up at Jeremy all prepped to go, he took my bodhi seed mala from me and placed it around his neck, it made me happy and looked like it belonged with him. Our middle child, Roark, gave me that mala the Christmas after I took refuge, became Buddhist and stepped into my vows. It has tallied the Shakyamuni mantra immeasurable times lately. The grief and anxiety were so loud after my diagnosis my ability to meditate flew out the window. But chanting that mantra grounded me and gave me peace.

I don’t remember anything after observing the operating room lights, until recovery, where I wanted J to be the first to place his hand on my heart. And apparently I informed the staff that my bound chest was “tighter than Mrs. Darcy’s corset.”

The trauma to my body has been enormous. A five-hour surgery has left me wrecked. More than anything I’ve experienced before from a car accident to bike crashes.

But I’m being gentle. Tender is my word. My caretaker husband has been so attentive. I’m the luckiest.

I’ve always been a gratitude girl, never taking anything for granted and never out of thank yous. But this…this experience has left me breathless.

Everything is beautiful and horrid simultaneously. I’ve learned there is no resisting, stepping into the suffering is the only way through. And as Nick Cave said, “There is more paradise in hell than we’ve been told.”

Today the dressings came off. I was so afraid to look down, I didn’t want to be sad. I’m so delighted to tell you all I’m all good - my chest wall is beautiful, the surgeon did amazing work. The pain is more manageable now and my nerve blocks came out today as well, so fewer tubes and machines and maintenance. Slowly shedding parts of this experience as I heal.

I can’t imagine navigating any of this without the deep love and support I’ve received. I’m grateful to you all. The tonglen, steadying Jeremy, the food and words that gave me confidence.

"The next time you lose heart and you can't bear to experience what you are feeling, you might recall this instruction: change the way you see it and lean in. That's basically the instruction that Dzigar Kongtrul gave me. And now I pass it on to you. Instead of blaming our discomfort on outer circumstances or on our own weakness, we can choose to stay present and awake to our experience, not rejecting it, not grasping it, not buying the stories that we relentlessly tell ourselves. This is priceless advice that addresses the true cause of suffering- yours, mine and that of all living beings."

--Pema Chodron :: (Taking The Leap)

Our American Gothic

[cymeeleanor]

[An Update From Jeremy Saturday]

Cyme is doing very well, which is to say she’s in pain, having trouble getting comfortable, and sad at times, but it’s all within reason and to be expected.

It’s one thing to be working hard for something exciting. Having babies at home is tough and painful, but what a carrot at the finish! Here, she’s persevering and trying to stay strong and while the end goal is healing to be sure, the finale is, at its core, an amputation, an uncertain future and a large compromise.

It would be the perfect time to read. She’s surrounded by hundreds of books and so much yearning, but… drugs. So swimy. Contemplation rules the slippery hours.

Back sleeping and sitting for long periods of time is not normal for Cyme. So we took a nice slow walk around the neighborhood, towing nerve block pumps and tubes, and stopped for deep breaths under blossoming crabapple trees and talked about the way this has brought to light how many amazing friends and confidants she has. I mean most of us have a hard time stepping into our full worth, giving ourselves credit and really feeling that we’re enough. There’s nothing like dozens of folks reaching out to relay beautiful messages of inspiration and courage to make one blink twice in awe and think, Wow do this many people really love me?

It reminds us that we are, as Jetsün Khandro Rinpoche said, “a gathering of the kindness of others.” It’s true. It’s been overwhelmingly apparent this week. With that support and the familiar comforts of home, it’s the perfect setup for proper healing.

yung pueblo

[cymeeleanor]

[An Update From Jeremy 7:30]

Cyme is out of surgery! That was a long day. The surgeon was very happy with the outcome. Cyme is still quite groggy and shaky but even in her sleepy state, with a breathy voice, she’s saying she wants people to know she made it and she’s lucky to have all of you.

Thank you so much for the well-wishes, the Tonglen, the notes and food and gift cards!

We’ll update you all soon ❤️

- Jeremy

[cymeeleanor]

[An Update From Jeremy 2pm]

Well, they just took our girl back for this surgery, which has been a radical upheaval for our family.

I'm torn. On one hand, I'm overwhelmed with gratitude to live in an age and a country where 19 out of 20 patients now survive this disease, which less than a century ago was a death sentence. I'm beyond fortunate to have had the means to shell out $20,000/year in insurance premiums, painfully, year upon year. That coverage is now the sole reason Cyme is in the talented hands of world-class folks at Shaw Cancer Center.

But also, I'm stunned at how quickly this viceral sadness and fear could just reach into our lives, cover everything, and pin us down mercilessly.

This morning the world became a blur. I couldn't read or navigate the hospital hallways. My mind was looping through flashes of her sitting on the edge of the bed last night bouncing like a nervous child and asking me to tell her she's gonna be OK and telling me I was gonna make her cry by telling her how much I love her.

But also there were the heady memories of our lives together, starting out as innocent 20-somethings brimming with idealism and building a love that raged like a fierce cauldron of fire these 24 years: We took road trips through pine mountain forests and deserts studded with monumental arches and spires; we swam in rivers brimming with icy alpine runoff while our young kiddos threw rocks and drew their names in the sand on the banks; we made every kind of food under the sun, from authentic ripped noodles I memorized during trips to Manhattan to Cyme's over the top Buddha Bowls, banoffee pie and her latest, the World's Most Perfect Protein Balls that are so important to the household that she made a triple batch 2 days before her surgery. We bought houses, fixed houses, raised silly chihuahuas and planted the Flame Maple in our front yard so my ever symbolic and sentimental wife could bury our children's placentas under the root ball so we could look at that tree and remember the parts of the womb that grew our babies lived forever under that gorgeous tree.

I've told people that story before and watched them wrinkle their noses. It cracks me up. If you wanna get down with Cyme you better be ready for the most raw and unconventional ride of your life, and just when you think she might be weird or over the top you realize she's more intentional than you've ever been on your best day and she's most interested in life being beautiful and meanigful and sacred and gives fuck-all about anything that waters down her vision of how to honor this divine peach we call life and squeeze out every last drop of juice with zero apologies in her relentless exploration of color and type and fabric and food and sex and meaning. If you've ever gotten a hand-lettered note from her or been lucky enough to have her send you the most perfect, curated quote at just the right moment, or build you a flower arrangement or even just pack you a lunch with cute little containers and a string tied around your sandwich like it was an offering, you know what I'm talking about.

So I'm standing there pushing through this interminable wait caused by a traffic jam on I70 that caused all sorts of problems for the hospital staff. And I want the wait to be over, but I want the wait to go on forever so I can stand there with my hand on her head, telling her I love her, before I have to send her off to this horrible procedure that's going to take away a precious part of her identity, but save her life nonetheless. And I realize right then that from Day 1 ten weeks ago when we found out, this special woman has been teaching a masterclass in how to deal with adversity with dignity and grace and an unmatched level of thoughtfulness. I was so sad to see her go. But I have to tell you how honored I am to be the one who, with your help, gets to take care of this visionary among us, help her heal and get back to normal. The payback will be one day when I see her cutting flowers for our table or stitching a quilt on the couch or walking barefoot on a riverbank, warm in the sun, and I'll know in that moment all this nastiness got behind her and she's carving out her own beautiful corner of the universe in peace once again.

I'll post again when she gets out of surgery around 5 or 6 pm. -Jeremy

May wildflowers on Cedar Mountain/September Sanctuary Trail hike

[cymeeleanor]

Leaning into the worthiness of the enormity of all the love descending upon me is one of my lessons in this.

As my lovely sangha sister, Susan, told me, humility is part of my journey in this project. When I was distressed about how to thank and repay everything coming my way, she advised me to “protect your energy.”

I love residing on the giving side. The receiving is challenging for me. Giving fills me up. So I’m doing my best, allowing all of you to show up (and be filled up) and tend to me and my family. All of you who have signed up via the Buddhist Center for meals and flowers, all the texts, the prayers, the amazing love notes I’ve received in the mail, all of you assuring me that you’re there to catch me on the other side of this invasive surgery… I’ve curated an incredibly beautiful family. Thank you from the bottom of my heart. I cry everyday in gratitude. I feel loved.

[cymeeleanor]

Our suffering is intelligent. Recognizing self created suffering as self created suffering and accepting natural suffering as natural suffering is the beginning of genuine freedom.

Tsunma Kunsang Palmo

The lovely Kunsang and me at retreat, 2023

[cymeeleanor]

Three weeks into this fuckery I followed a yearning to get a new tattoo. I knew I needed it on my person in my own handwriting upside down so I could glance down and see it. A self-made mantra of sorts from a favorite Chögyam Trungpa quote. Myself now in a full-on, wild free-fall, these words intimately nested in the core of my being.

“The bad news is you’re falling through the air, nothing to hang on to, no parachute. The good news is, there’s no ground.” 

NO PARACHUTE

NO GROUND

[cymeeleanor]

“Did you know?” That’s the question I now get.

Yes.

I knew something was wrong. The same way a subtle change to a constant and familiar sound alerts a pilot that the plane is not right. Or how a smell in our kitchen undetected by everyone but Roark and me led to my insistence that we weren’t safe which led to Jeremy finding and fixing some ancient wiring that saved us from a fire.

Something was off.

Last fall I started getting scared. My best friend, Sonia, who died at 59, was on my heart, and I wondered if 50 was my number, that I’d never have the privilege to visit 96 as both my grandmothers did. For months, we had chalked up so much going sideways to my perimenopause. But by the end of the year when I started scheduling my 2025 appointments (my yearly, a dental cleaning, mammogram and the colonoscopy I was now due for), I had anxiety.

Yahtzee.

I had made this. And quite apropos: right next to my heart.

Days after my diagnosis, Jeremy recalled a podcast in which a neurologist—a professor at Yale—spoke about the signs of cancer that precede diagnosis. We googled it. I had all the behavioral and emotional tells. Every.God.Damn.One. From panic attacks that started almost a year ago, to social withdrawal—including quitting one’s job (in November, I resigned from the board I had been on for five years), to persistent sadness and loss of appetite. The latter I had chalked up to the heartache from a breakup last summer that I was finding impossible to navigate. Guilt and worthlessness: didn’t I just need to work on myself more, mid-life rumination is hard core at this age, right? Irritability and mood swings: must be more of that perimenopause. Loss of motivation: that’s depression from the break up; normal for a broken heart, right?

Everything was askew. And I was referring to it as The Great Unraveling with my best friend, Abi. She and my husband were bearing witness that I was doing all-the-things to feel well. All of them. Meditating, HRT, cold plunges, yoga, sleep, a psilocybin journey… I was struggling and genuinely proud of my discipline to push through considering my lack of bandwidth.

I was unwell.

So now I have a diagnosis. An all consuming new reality. And my new assignment is one of healing and rest, sorting and resolving.

[cymeeleanor]

You are being carried forward by something older and wilder than sorrow.

You are being stitched back together by hands you cannot see.

You are becoming someone you have not yet met.

[cymeeleanor]

a sticky post: Going Flat

[Disclaimer: I completely and fully support every woman’s personal choice in this horrid affair of breast cancer. And I’m so happy that reconstruction is covered by insurance—it wasn’t always—so women can navigate the trauma of what transpires from this disease. My decision is off the beaten path, but I in no way am judging anyone on their decision to choose reconstructive surgery. You do you, and I’m doing me.]

yours truly at 21, exactly thirty years ago

This is an explanation of my thought process on why I’ve chosen to have an aesthetic flat closure because many of you have been miffed by this decision and have gently expressed that inquisitively and I see it paining some of you.

I have been a witness up close to mastectomy. My grandmother, mother, friends as well as acquaintances. In the back of my mind, there was already a trajectory set in motion. I wonder if this is the case for many women, even if subconsciously, because the 1-in-8 fear is real for all of us. And when you’ve dealt with a decade of call backs, aspirations, a lumpectomy and biopsies, such as I have, it’s played in your head. This isn’t something I came to a sudden decision on a few weeks ago. So yes, I knew what my possible future held. No tits.

Going Flat, here we go:

(oof, did you read the disclaimer?)

I have no desire to have something cold (yup) and synthetic in my body.

Most people don’t seem to know that all sensation is lost. Reconstruction is NOT a boob job. All nerves are cleaned out with the breast tissue. You are numb. No pleasure from groping, no nipple stimulation. My chest wall will be numb as well.

For me personally this means I’d be just taking my partners’ enjoyment into consideration as a plaything, not that I don’t care about their pleasure. But all the trouble and possible complications would not be for my benefit and I’m left with the 24/7 of it. That’s a major ordeal to endure for just someone else’s occasional gratification. I’m afraid it would echo my sorrow in a negative way. And I don’t have pressure from my husband. In fact he did not weigh in at all—“your body, your decision.” Our relationship is solid and I don’t have any insecurities about my worth as a wife and his lover being in jeopardy by not having fake boobs or him considering me less of a woman. Are we both sad about this? Absolutely devastated. We are both in mourning and trying to navigate a shit ton of grief.

Bonuses:

My recovery will be cut by more than half.

One surgery and done.

There is a reduction in the risk of numerous complications. With reconstruction some women are faced with losing a nipple (or two) and must return for more surgery due to lack of blood flow and death of the tissue, just to name one (yes, I know some).

I won’t face recalls or expiration of implants.

I NEVER have to get a mammogram again. After my markers were placed for surgery I received my last mammogram and my entire team waited outside my dressing room at the breast center to give me hugs goodbye after. Some of these women I’ve known on my boob adventures for years.

This thing is happening to me. And soon enough I’ll be able to live it as something that happened to me, past tense. Having numb cold weight on my chest isn’t going to change that fact. This is a traumatic ordeal. And I’m facing it as bravely as I can. Not feeling pressure to literally fill this void has been empowering for me to not get tangled up in some kind of hysterical vanity or attempt to cover up what’s really happening. As my best friend has told me as this has played out, “that’s metal.” I want to figure out how to cope with this crisis head on and boldly.

Has this been an easy choice? No. I have been visited at four am (my now regular unsolicited hour of bereavement), woken by hot tears while wanting to throw up. I don’t want to do this at all. And the reality that will greet me in a few days is one I can only imagine that will be shocking and indescribably jarring.

But I’m not alone in making this raw choice. More and more women are making the aesthetic flat closure decision. And they are aligning and educating others. Also, fighting a system that up until a few years ago required a psych evaluation to proceed. One very prominent woman is Tig Nataro. Tig documented her breast cancer publicly days after her diagnosis on stage all the way to removing her shirt during her 2015 HBO stand up on the other side of it. I had a jolt when I recalled this and find it comforting to have the camaraderie. I’ve been lucky enough to meet others who have chosen flat since my diagnosis. Some of my friends who had reconstruction have confided in me that if they had to do it again they’d chose flat. A few therapists and practitioners have told me they regularly meet women who regret their reconstruction, but none who are disappointed by their decision to go flat.

So yes, I’ve sat on my bed weeping deeply wondering what to do with some sweet darted sundresses that I’ve sported for years and my gorgeous formal dresses, including my beautiful red wedding dress, that will no longer fit me. Anyone want some expensive bras?

My beauties have served me well. I nursed my kids for a total of eight years of my life. They’ve given me pleasure and been fun sharing with my lovers. Made outfits sexy. But circumstance has me saying “ta ta, tatas” (required eye roll here, we gotta laugh or I’ll completely fall apart). I need to let go. And remember even though I have autonomy in this decision not to do silicone, it’s cancer that ultimately took them away, not me.

Tig Nataro