Diet, Health vs. Beauty

Toast and Eggs and Toast and Eggs.

This morning I looked down at my breakfast with no affection or desire. The sixth pile of toast and eggs in as many days. I felt a tired resignation and appreciation that the carbo-loading marathon week was over. My body has been reluctantly eating pasta, bread + butter, rice and potatoes for the last seven days; the suggested diet to store up energy for the second surgery tomorrow.

When my mother was very, very ill and very, very thin she looked at me and said, “how I regret all those damn diets now.” With her voice echoing in my head I soldiered on last week, stuffing in all the food groups I had literally eliminated from my diet for the last five years. Bread? Where’s the butter. Pasta? Let’s stuff that with cheese and ricotta please. Potatoes? Slide over that sour cream! A diet contrary to everything I believed was now good for me and you had better believe I was following the rule book.

The process of taking care of myself has rearranged and shifted what is important: Food as medicine even when I have not a lick of an appetite. Surgery as preventative medicine, despite how close this is to the last one. New sheets as medicine, just because. Taking naps. Lying down when I need to. I just had a practice run six weeks ago for this recovery X 2, and will therefore forgive myself the couch time, the extra needs.

That moment when your life swivels, that shiver when your blood stops in your veins?  My pathology report was that moment. This plate of eggs? Doesn’t matter what I want to eat this morning. This is what I need to eat. Want and need have changed their relationship, every morning performing a complicated dance in my head, in my hips, in my heart.

I will wake up tomorrow relieved that this step is over, anxious to move on to recovery and health, my book project or any writing that emerges, my daughter’s wedding and the budding peonies. Olive will need her teeth cleaned. Lists will need to be made. And I will follow whatever diet prescribed, for as long as I have to, as that is the new order of taking care of myself.

I dream of salad Niçoise. And that créme brûlée brioche from Tatte on Charles Street. Mmmmm.

Just saying. A girl can dream.

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Bravery, Carcinoid tumor, Health vs. Beauty, ovarian cancer, Women

Bravery: Not Always Pretty.

After the elective ovary-fallopian tube removal surgery that filled my abdomen with air, then sliced, diced, washed and scrutinized everything that could be examined in my abdomen — along the way my appendix didn’t look good, so the surgeon nipped that out too — the bloating had finally reduced enough on day four so that I could see my feet. In disbelief I howled my first complete sentence into the shower steam;

“WHO THE F DID THEY GIVE THE RAZOR TO?”

That was when I got my first laugh, bent over the sink holding a towel to my sutured belly. I needed that laugh. My belly was a mountain range of peeling steri-strips, yellow bruising up and down and around, my belly button full of stitches.

Thanks to two friends in the medical profession I had been linked up with a first class surgeon. April 20, 2017, was her first available surgery slot — a completely random date, for a straightforward elective preventative surgery  — which turned out to be more crucial than anyone knew. Two weeks into recovery, pathology reported that my female bits were all fine. But I only got half a victory lap. The appendix was filled with tumor.

The road back from this surgery initially required patience, sleep and helping hands. But most importantly, this one required, and still requires, bravery.

I am healing from round one and my work isn’t done. I have been overwhelmed and full of fear since the pathology report, the kind that makes your knees weak and your head disconnected, a paralysis that had me knocking things over when I bothered to even get off the couch. I did not know this fear, a bleak, dark, exhausting swamp that mired me day and night, that arrested my healing, my appetite and my sleep. I didn’t want to be alone, and then cringed when anyone saw me. This was ugly. This was not brave.

And then, last week, I went back to Mass General Hospital and met with my GI Oncologist and the next surgeon for round two. As we talked, I felt the anxiety rise out of me. Like a palpable, visible mist right off my shoulders. I suddenly realized I chose trust. As these two men looked me in the eye and laid out our game plan, I understood that after a life of being in control I could recognize when to give it away. I didn’t google, or argue, or faint. I asked questions and listened carefully. I brought a note taker.

The next day I received an email from a fellow writer and cancer survivor. She wrote me: You have to be a fighter. And I would add, to be a fighter, you need to chose your team to go to battle with you. And when I chose, and accepted, I got my first good night’s sleep.

As I move forward, this life changing surgery — now referred to as surgery #1 —  leads me in a few weeks to surgery #2. I choose to count my blessing; if I had postponed the first surgery until after my daughter’s wedding in September the situation would have been immeasurably worse. I will have deeper scars and take longer to heal. I have to ask friends and family to re-boot meals and help and support all over again (thank you). I will most likely marvel if not laugh over the new mountain range of scars and the price of spanxx.

Bravery isn’t pretty, but I am upright.

Though frankly, the guy in surgery #1 with the razor (had to be a guy) might have tried to do something about those stretch marks while he was down there.

To be continued.

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Nurse Olive never left my side.

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#CRUS11TOUR, Friendship, Grief, Tears

Spill With Me.

 

I can be made of steel and counted on in any crisis. But I do not feel badly when and if I cry, too. Why is it that the moment we begin to cry — especially men — we apologize? When did we learn that crying makes us lesser in some way?  In the past few months I have heard too many times, “I have to stop crying, this is the last time, I promise.”  Why?

There is a whole lot of emotion out there these days for me. Riding on my sleeve, face, heavy heart and yes, tracking down my face in the form of tears. Did this wave start on November 11, 2016? Crying on election night was a first for me. Hard tears. Maybe.

But I also cried when I saw the first spring heron on Green Lake and the first hyacinth bloom, when I heard a friend’s diagnosis and watched Davey’s #CRUS11TOUR team cross the Boston Marathon finish line yesterday.  I have been crying for happy, for sad, for pride. The tears felt necessary and the aftermath felt, well, good. I honored the moment that way. I honored the feelings that way. I honored these people with my tears.

Wait. Aren’t we supposed to buck up, stop crying, pull ourselves together, don’t be a baby, time to stop crying and get on with it, be a grownup, go it alone?

No.

By crying, letting those tears fall, swiping them with your sleeve or my proffered handkerchief, maybe even adding a hug, we demonstrate several things to the people around us: trust, intimacy, vulnerability, friendship, to name a few. Consider the baby crying. Consider happy tears at a wedding. And consider, for a moment, how painfully difficult it is to hold back tears because someone said you should.

Since November I have had many unexpected reasons to laugh and to cry, more than any other time in my life. I don’t know about you but those tears — that welling, salty water filling my eyes, floating behind my eyelashes, spilling down arbitrarily, often in front of other people — just seems to be what my body needs to release and express and shed with others. Maybe I am spilling my emotions out all over the place but I share them unconditionally with you, friends, because I trust you.

And know that if you cry in front of me, I consider that a great honor.

There is always an extra hankie in my pocket, just in case.

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Choices, ovarian cancer, Suzanne Wedel, Suzanne Wedel XOXOUT

My body, My friend.

Some people might place flowers to honor a friend’s death. I will lie my body down.

Three hundred and sixty five days ago my friend Dr. Suzanne Wedel died from ovarian cancer. Her daughter called to tell me while I was standing on an empty beach, watching the gulls hover over iced waves. I was willing time to stand still. Three hundred and sixty five days later, I honor Suzanne with a surgery date, making good on a promise I made to her. Doing all I can so history does not repeat itself.

My mother was diagnosed with ovarian cancer when I was twenty-one years old and she was forty-seven. We coped. We fought. We learned. We lost. That has always been the nature of ovarian cancer, no different in 1982 or 2017 — once diagnosed, a woman’s risk of dying is exponentially higher than any other female cancer. It hides, divides and grows unseen. Once ovarian cancer is diagnosed, you are past the easy stage. Period.

I trusted medical advances and advice for the last thirty years: yearly CA125 blood test, trans-vaginal ultrasounds, twice-yearly pelvics. Until Suzanne. Amazing physician, mother and friend with no familial history of ovarian cancer. Then — a pain in her shoulder. Tight waistband. After three years of every cutting edge surgery and treatment, she was gone.

Her illness highlighted that there is no magic wand no matter who you are: ovarian cancer, without an early detection test, is deadly. Her genetics were negative, but there I was sitting next to her on her couch with personal family history of this cancer. The gig was up. She made me promise; promise to remove my ovaries and fallopian tubes, SOON. She very plainly noted, as Suzanne could do so well, that I was foolish to play roulette with my body and my history.

What you should know: Today, oncologists advise if there is any family history, regardless of genetics, fallopian tubes and ovaries should be removed after bearing the last child. That they now believe ovarian cancer originates in the fallopian tubes.  That waiting, until one is fifty-eight years old with a family history, no matter how informed you think you are, is stupid.

I have been given a clean bill of health and await my genetic map. Regardless, on April 20, 2017 I will go spend the day with an incredible surgeon, AK Goodman, at Mass General Hospital. I will have mourned my fertility, my hormones and my skin appropriately. I will have loose pretty pajamas and friends waiting for me at home. I will honor my friend and her family and what we know so far. And if we are supremely fortunate, the Suzanne XOXOUT Fund will expedite an early detection test so my children and their children can grow old with less risk.

Better than flowers. I can now stand on the beach and tell her she made a difference. In so many ways, but especially to me. But she knows that.

XOX back at you, Suzanne.

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March 30, 2017 Bainbridge Island Ferry, sunrise

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Friendship, Support, writing

Map of Self.

I arrived in Seattle yesterday morning from Boston, my 7AM flight landing at SeaTac an hour early which covered two sunrises.  There was still snow in icy heaps back in Boston. Here, I can see a sea of cherry and plum blossoms from the Nest and this morning the birdsong woke me at 5AM. A pair of crows were stripping the flower garden below of dead, wiry nest material when I stepped out and smelled the air — that Pacific Northwest moist leaf and fertile dirt smell. I fed them some of my muffin, then I set up the ironing board, read fifty pages, edited a chapter and cleaned the Nest. These next five days might well be the most accurate map of my brain to date. But look closely at the lines.

On Friday I will participate in a public reading At The Fault Line on Capitol Hill, presenting an abbreviated chapter from my memoir manuscript. I am still whittling the reading to a strict six and a half minute limit (with no success — getting there). There is dress rehearsal tonight, the only one I could attend, and four more days to sweat the outfit. There is a little prayer involved that the writing lobe of my brain can make efficient edits and read clearly under the spotlights and under pressure.

I have discovered, in the words of Linda Kulman, that “ass in chair” is imperative to the progress of my manuscript, as is “stand in public and take it like a woman.” So here it goes, read out loud, the part of my story where I was at the fault line and had to decide which side to jump.

On Saturday I am the ‘featured designer’ at Churchmouse Yarn and Teas on Bainbridge Island, a yarn and design shop where, if I could split myself in two, I would work the night shift or be stock girl or even fetch coffee that is how much I love their business. My scarf caught their attention a year ago, and they transformed my meager notes into a versatile pattern that can be knit in a variety of yarn weights. I sent out requests to borrow all my cousins’ and daughters’ versions of the pattern and will have a glorious heap of scarves for the event. My flat smells of wet wool as I wash, resize and steam them on my knees, the floor covered in damp towels. I hope someone asks me a question or two Saturday afternoon, but to be honest, I will just be so darned pleased to be there.

And every day at tea time I will talk to my friend back east and try to ease her day a little, make her smile and remind her how much she is loved. This is the most important piece of each day right now, remembering it isn’t the spotlight, or the questions, or the perfectly aligned paragraphs/edges/manuscript page/outfit. I challenge that those lines are mapped out in my brain in pencil — I can erase them if needed, change them around, reschedule — as I did, staying east to be with my family and friends and missing all the rehearsals.

Because the most meaningful line in my brain, on my map of self, is written in ink. The giving line.

This other stuff will happen and be fun, the second draft of my memoir will get written but not quickly. On my map of self, the giving line is indelible. I choose plum-colored ink for her. It is that simple.

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Walking to Green Lake, March 26, 2017

 

 

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Grief, Support

Not About Me. All About You.

Ten days ago I pulled my only black suit from the back of my closet, brushed the dust off the shoulders, and prepared myself for the first of two funerals in forty-eight hours. Two young men, too early. Two young men so loved. Inconceivably, the universe fell further off it’s axis that week, with news of medical challenges for a person so dear to my heart. The beginning of February has been layers of sadness and bad news, sadness and grief, sadness and fatigue laid on so thick and fast I lie awake with my heart pounding.

I purchased this suit in 2005 for $30.00 at a post-holiday dump sale at Macy’s. A black suit of mixed fiber heritage, I stalled at the checkout —  there was a slightly ruffled hemline. Was this flirty? WAY too dated? Frighteningly inappropriate despite the color and square understated jacket? Really, really cheap of me?  I stood and sweated in the aisle, spinning the racks, rapidly depleting time and confidence. Ultimately, I decided my mother-in-law would be proud of my thriftiness and daring at her memorial service in the lofty New Haven, Connecticut, Episcapalian church, surrounded by sensible tweeds and twinsets.

The suit is the easy part. More challenging is how to gift ease to others at these times: the 101 of giving support and care is often counterintuitive. My first instinct is to barrel in, fix everything, spew wisdom, share stories, buy too much for a lot of money. In a love-driven, panic fueled sadness. But what I have learned over the years, in actual fact, is that waiting and listening can be the greatest gift, the most needed ingredient to help others survive loss or life-changing news.

My absolute is to remember nothing is about me. I try to pay attention to the little things —  a texted emojis heart, a small vase of daffodils left on the doorstep to allow privacy, sending a card. What helps and how will I know? Sometimes I don’t. But I always ask first, then take action if needed or wanted. I let my action be determined by the people that need it. Sometimes, it is all I can do to practice this, I want to fix everything so badly. But then I remember — this is not at all about me.

Nothing is good about five dinners delivered on the doorstep on the same day when everyone is sick to their stomach. But soon, in time, needs present themselves. The dogs will need to be walked, the groceries delivered, the laundry folded. And nothing is nicer than a card of encouragement that makes someone smile. Showing my love is sometimes about not showing up uninvited and sometimes takes every bit of willpower I can muster.

I never regretted the purchase, or the flirty hemline. It has held up to everything I needed, has been borrowed, dry-cleaned, tide-sticked, re-sewn, worn with-and-without a slip, always paired with dress boots over and over for the last twelve years. Always ready for whatever I need it to do. The little ruffle makes me smile when I am sad. It waits patiently and makes tough times easier.

Last week, I fully expected the skirt to halt at my hips, the jacket buttons to refuse to meet. It had not been worn for a long while. But each piece slid on, forgiving the last two years of injuries, accommodating the control top pantyhose, gifting me, once again, with ease at the time of extordinary sadness.

This is a silly analogy that means well. When the buttons buttoned I was so grateful the suit was just hanging there, waiting.

Find out what fits the needs of others. Sometimes, it is just waiting, listening or letting a family know you are available for the call.  Then you will be the perfect person, at the perfect time. And don’t forget to breathe.

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Marblehead, MA, February harbor

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Facebook, Friendship, Social Media

Friend-back.

 

There is a lot I do not want to read this month — or see, or hear. Inconceivable to me a year ago, I have been making daily choices about the news: read the New York Times or toss? Turn on the evening news or Netflix? Scroll through Twitter or ignore.?

“Bear witness!” my cousin scolds me. But I need to manage my media diet to sleep at night. I have taken to skimming. I deleted The Skimm (suddenly, it seems too snarky and young when everything is too much in crisis). Facebook, however, has been a bit of a conundrum.

As a social media tool, FB has such information potential and such damage potential. A year ago, convinced I couldn’t listen or read what the Trump supporters had to post, I ‘unfollowed’ a lot of people. I defined ‘friends’ as those that agreed with my politics. But look where that landed me — in a bubble of Hilary supporters and no balanced perspective. I was crushed even more– a tough lesson in listening and not just to what I wanted to hear.

Since January 21st, 2017 the site has become a place to ‘click and share’ our rage and disbelief, media false or true, pictures that can be difficult to look at, rhetoric that ranges from “F***” to “Crying.” Frankly, who isn’t going through that range of emotion every day, regardless of which party you support?

This time, I won’t un-friend you. In fact, I have ‘friended-back’ everyone.

I am listening.

I fully understand that the rate of posting cute puppies or sporty photos in exotic locations has steeply declined. We are a nation in crisis. But you are my friends, and for that I will read your feed, wince in private, and be present to what is happening and for you.

Otherwise, I am uninformed and not a friend. But throw me a cute Scottish Terrier sometime just to keep my heartburn at bay.

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