Category Archives: ovarian cancer

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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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, Kansas, ovarian cancer, Suzanne Wedel

Lesson From A Friend.

Last weekend I traveled to North Newton, Kansas to attend a memorial service for my friend, Dr Suzanne Wedel, who died seven months ago from ovarian cancer. Her Kansas family and their mennonite kindness was astonishing; everyone hugged me, everyone I met — and there were so many! — was a cousin, schoolmate, teacher, or friend of Suzanne. I ate my weight in family Swiss chocolates, Zwieback rolls slathered in jam and cream cheese, sweet, swirly poppy seed cakes, dense orange and white cheese curds, drank gallons of iced tea. And the endless beauty of Kansas; black birds diving through indigenous grasses, soybean planted as far as my eyes could squint, traces of the ancient indian tribes in art and markers and the clouds.

I had anticipated this rich historic land. I had not anticipated that I would feel her standing next to me. In North Newton, Kansas, I had found the heart of her heart.

I saw her in her father’s smile, her brother’s laugh, her sister’s voice, her mother’s eyes.   I cried and laughed as friends and family reminisced about her antics from four-years old and beyond. They embodied her and she embodied them in every story. I see you, my friend.

I had goosebumps when I walked into her childhood home. After climbing the narrow staircase and ducking my head into her bedroom I swear she tapped me on the shoulder and said, “Hey, let’s go rake those leaves!”I could hear her scamper out the house full of purpose. We know what she went on to do with that purpose — that little Kansas girl grew up to make a monumental impact on emergency medicine around the world. Just a year ago, she launched a fund to support research for ovarian cancer early detection , initiating steps to prevent ovarian cancer in her daughter, grandchildren and generations of women to come. She was beloved and respected from coast to coast. Her dedication to family, work and friends was tireless.

Suzanne raised the bar on living life from early on but especially during her illness. She demonstrated that every, single second we breathe we need to love and love and love. Each other and ourselves. And her essence, her care, her calm focused center formed right here under the eaves of this solid little white house. I saw her in the big sky, the massive oak trees, the sheltered porch, the family who loved her so. I missed her all over again in North Newton, Kansas. Hard.

When Suzanne was diagnosed with ovarian cancer, she called me and said, “You know. I don’t even have to tell you.” And I did know. The thirty-five years between her call and my mother’s same call had not changed the statistics for ovarian cancer survival, or even the drugs all that much. Our friendship was intense, loving and too short.

You know.

Grief is a strange and wondrous emotion that takes possession of us in so many different ways. Do not believe anyone who says there are time limits or any sort of statue of limitations on sadness after the loss of someone or something you hold dear. I will never forget her and know that sharp moments of grief will overwhelm me for years to come — seeing her children grow to adulthood, walk down the aisle, have their own babies, when our friends gather for chili during the holidays, when her teams win, when we sing Christmas carols.

There is a childhood story that circulates about Suzanne. Once when she was very young she announced that she would go to heaven first, then come back down and tell everyone how to get there. As I sat under the sparkling stained glass and soaring wood ceiling of the Bethel College chapel I knew one thing for certain: Every day of her life she had shown us how to get there.

This lesson from my friend will shape me forever.

Now I know where she is, here in the heartland of Kansas, skipping stones and running along the wide, warm sidewalk. And someday I will return to North Newton and tell her what’s happening, pat her favorite tree and thank her for reminding me what I do counts, each and every day.

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Wedel House, North Newton, Kansas.

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