Share Your Cancer Story

“Come on in and join the party!” my friend Mary, the birthday ‘girl’ and host, welcomed me. She was in the midst of checking the beverage coolers, taking care of her guests.

It was Saturday night and I was ready for a break from my growing lists of tasks: next steps in publishing my memoir, household chores crying out from neglect, charts to review for my part-time research nurse job. Going to my friend’s party was a welcomed relief.

Once I had my plate of food and was looking for a place to sit, Mary said, “Connie, I want you to meet someone who just finished our Expressive Writing Group.”

Mary had developed that group for the Waverly Survivor Clinic. We first met while participating on the planning committee to establish supports for our survivors’ community. I’d received chemo for breast cancer in their treatment area.

“This is Kay. She just completed the program,” Mary told me, then turned toward Kay. “Connie was in my first group two years ago.”

We sat across from each other on the couch. She was younger than me, mid-forties, and was stylishly dressed and wore a fedora atop her curly, dark hair. I’ve always liked fedoras, and admired women with the confidence to wear them, especially since I’ve never been a hat person. She asked me about my experience with the group, but then she was interested in my cancer story.

“It’s been eighteen years, now,” I told her. “I was shocked when they told me I had breast cancer, since I don’t have a family history of the disease.”

She’d heard the same statistic as me, that 70% of those diagnosed do not have a family history. I told her mine was discovered on a routine mammogram, the word routine always giving me pause since that day when I ran out for that mammogram during my lunch break.

“Yeah, mine was triple-negative and I wanted Dr. Graham to do everything possible to get rid of the cancer,” I told her. “I was forty-five and my sons were in 9thand 10thgrade. As a mother, after my first concern of, “Am I going to live?” my next priority was being there for my boys.”

She told me hers was triple-negative, too, and that she’d finished treatment just a little over a year ago. I knew that her memories and her fears were fresh.

She asked me about my course of treatment. We’d had a similar path but the steps were in a different order.

“Those appointments get easier over time,” I told her, remembering how anxious I was post-treatment, out from under the frequent visits and protective watch of my oncologist.

“It’s so good to talk to you, to hear that you’re an eighteen-year survivor,” she said.

Her comment reminded me of an experience at my surgeon’s office the week I found out I had breast cancer. Sitting and waiting for my appointment for him to explain the pathology report and answer my panicky questions, I overheard a woman talking about her breast cancer to the receptionist.

“I can’t believe it’s been eight years,” the receptionist said to the woman. “You really look good.”

She’s lived for eight years, I marveled. While I was a nurse, I’d never worked in oncology and never read about breast cancer. My recent experience of losing a high school classmate from that disease was my point of reference. Overhearing that conversation settled me down, and often played in my head over the months of treatment.

Now, Kay was telling me the same thing—that my story of being an eighteen-year survivor had given her hope. It reminded me that I needed to be available to share my story, when the other person was wanting to hear it. I remembered times when I didn’t want to talk about cancer, I wanted to forget about it—at least for a while. As a survivor, I needed to let the other person lead with what they wanted at that moment.

We finished our dinner and Mary led us out to the garage where The String Beings band was playing. Guests sat in lawn chairs listening to the relaxing Saturday night music, talking with the band members between songs. I spotted Dr. Graham, the first time I’d seen him outside the office, looking all ‘regular’ in a casual shirt, pants, and athletic shoes, without that long white lab coat.

Kay and I found seats near the band and continued our conversation. She showed me some of her family pictures, and pointed out her pre-chemo, straight hair. Her Mama Pride radiated when she shared the picture of her son. What a beautiful family that had been there for her during her treatment.

We talked and talked until the band played their last song.

Leaving Mary’s party, I felt full and happy. I’d encouraged a fellow survivor and in the process, made a new friend. I’d been reminded how important it is to share our cancer story, that though I want to move on and leave that behind me, there are people in my path who need Hope.

How About You?

What is your story that could provide someone with hope?

How does it impact them when you share your story? How does it impact you?

(Sorry, Friends. My photos are not loading today–after many tries! So frustrating. Will try to post them in the future)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Forced Endings: Struggling in The Gap

When I was a child, I loved finding hiding places. Among them would be a ditch-like den between two hills where I could sink down into that spot, not able to see ahead or behind. The earthen floor and walls were protection from cold and wind, providing a cozy place to play. In last week’s post, “Afraid of the Next Chapter,” I talked about my retirement from school nursing in light of Bridges’ three phases of change: Endings, The Gap, New Beginnings. I left you in The Gap, to sit with the process, that now reminds me of that childhood hiding place where, by choice, I could sit for a while.

My retirement from School Nursing was an Ending that I’d anticipated for many years. It was a change that I’d chosen. But sometimes Endings are not our choice; they are forced upon us, unexpected and unwanted, like death, divorce, or relocation because another family member has a new job. The forced ending that impacted my life right after I’d completed cancer treatment, was being fired from a job.

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Back then, I was trying to navigate working in a clinical trials research company with treatment for triple-negative breast cancer. Within two weeks of starting with that small company, I realized there were problems: negative relationships among the staff, working for a private business trying to survive in a competitive market, operating without the safety net of publicly funded hospitals and schools with their procedures and protocols that protect the client and employee.

I decided to continue my work with the research company and hope that things improved as I became more skilled in my new area of nursing. I’d give it a year, and if things weren’t better, I’d pursue a new job. But right when I was approaching that one year mark, I was diagnosed with breast cancer and couldn’t leave. I had to keep working there to maintain my health insurance.

It was a real struggle through those eight months of treatment and working in the research company. Those experiences are at the center of my upcoming memoir, He Heard My Voice: A Midlife Mom’s Journey through Cancer and Stress and Her Unexpected Arrival at Healing and Wholeness. Things improved for a while after that eight months, but then there was a downward turn. One day I was called into the conference room for an unexpected meeting. The business manager and Tara, another nurse and my nemesis, sat down with me.

“Connie, things just aren’t working out for you here. We’ve all decided that today is your last day,” Tara told me.

What, just like that? You’re firing me?

 I was in shock, angry, stunned, indignant, shamed, and totally lost (I won’t go on now to tell you about the rest of that scene around the conference room table. You can read all the details in the book!).

While I had disliked a lot of things about working with that company, I wanted to leave when I chose to, not by their force.

The days after my firing, were filled with strong emotions, jags of crying, moments of relief, panicky uncertainty, and struggling with God. I walked the half-mile road of our rural neighborhood, what became my ‘track of travail’ and called out to God, “How could you allow this to happen to me?” “Haven’t I already been through enough with the cancer?”

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My sudden Ending at that company transitioned into The Gap, where I muddled through and often relived that scene around the table, feeling that anger, that rage, at Tara and the administrators that were behind the decision. Like the pit described in Psalm 40:2 (NIV), which I’d first experienced while working there and going through cancer, I felt like I’d fallen back in that dark hole after I was fired.

A pit. Kind of like a trench, a gap, a place deep in the earth.

With being fired from the job, it took a while in the pit of “mud and mire” to work through that loss and the attendant emotions. Gradually, God lifted me out and set my feet on a firm rock, a solid place to stand. It was then that I could see beyond the pit, from my secure position on the rock. I caught glimpses of what was ahead, of the promise of new beginnings.

While my forced ending was being fired from a job, you may have experienced another type of forced ending and landed in your unique pit of mud and mire. For all of us, it takes working through that muddy place, gradually being able to climb out, through the strength within us, through the support of others, through the mighty lifting by the hands of God.

 

 

And once we’re out of that pit, moving up from The Gap, we catch a glimpse of our New Beginnings.  We’ll wash off the caked mud and mire and step forward toward that place which we didn’t anticipate, we didn’t choose, but awaits us with fresh possibilities.

 

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Posts related to Research Job and Breast Cancer Treatment:

July 19, 2017 Into a Life

July 23, 2017 Navigating a Rough Road

July 30, 2017 Toxic Takeaway

 

How About You?

What Forced Endings have you experienced in your life?

How did you deal with that time in The Gap?

What did you learn during that time that has served you ever since?

 

 

Daily Bread at Tibbett’s Point

It was June and I was celebrating being a 10-year Breast Cancer Survivor, a decade since I’d heard the words, “You have cancer.”  I wanted to take my summer journey to a special place, the seventh solo trip that had turned into yearly pilgrimages.  Thumbing through a resource book for hostels in the U.S., I found the perfect place, described as a location with the most beautiful sunsets: Tibbett’s Point Lighthouse Hostel. Located in Cape Vincent, New York, where the St. Lawrence River flowed into Lake Ontario, the hostel was in the former lighthouse keeper’s house.

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Looking at the map, when I drove from the Buffalo airport to Cape Vincent, I’d travel through the Genesee Valley, an area I’d first learned of through the writings of Henry Nouwen. He was a Catholic theologian and I liked his down-to-earth-way of writing about faith.  He’d stayed at the Abbey at Genesee, living and learning with the monks and wrote about it in the book, The Diary of Genesee.  I decided to take a side-trip off the NY Thruway and go to that same abbey– pick up a copy of the book and loaves of Monk’s Bread to take as a ‘pilgrim’s gift’ to the hostel.

The evening I arrived, I was amazed at my first glimpse of the sun setting over the St. Lawrence River, an orange orb sliding down the back side of the dark blue sky.  People were sitting in Adirondack chairs near the lighthouse, facing west and witnessing together the closing of another day.  I knocked on the office door and was greeted by Bea, the 83-year-old woman who was filling in for the current manager.

After she showed me around, Bea invited me to join her and two other women along with two college-age guests at the kitchen table.  The conversation flowed easily, with folks telling about experiences in different hostels– all solo travelers.

“This is what I love about hostels,” Bea said.  “Everyone sitting around the table like this, sharing all their adventures.”

Later, the two college-age guests left and Bea, Ruth– who was also in her eighties, and Coleen, sixty-three, who was Bea’s friend from down the road, continued talking, including me in their familiar conversation.  I unpacked my food, including the two loaves of Monk’s Bread.

“Here’s something I brought to share with everyone,” I said, and placed the loaves on the table.

Coleen pulled one over and read the ingredients.

“I love cinnamon bread. I don’t often buy it because it’s expensive and I live on a retiree’s income,” she said. “Think I’ll try some now.” She took a slice, bit into it, and smiled.

For the next five days, I made my home at the hostel.  At breakfast and dinner, I enjoyed getting to know Bea, Ruth, and Coleen.  I came to think of them as the ‘Golden Girls of Tibbett’s Point’ as their personalities reminded me of the other Golden Girls on the old t.v. sitcom.

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(L to R) Bea, Coleen, Ruth, Me

During the day, I explored the area– writing in a Cape Vincent coffee shop, trekking over to Kingston, Canada, and taking a boat tour of the Thousand Islands. One evening when I returned from observing the sunset, Coleen and Ruth were sitting at the table. Bea was measuring flour into a bowl.

“Come join us, Connie,” Ruth said.  “We’re watching Bea work.”

“I’m making cookies with my Grandmother’s recipe,” Bea explained. “She never wasted anything.”

“You won’t believe how good they are,” Coleen said, “even with chicken fat.”

Chicken fat?” I asked, thinking I must have misheard.

Coleen smiled, “They really are good.”

We waited around the table, while Bea added sugar and a lot of pumpkin pie spice.  After a thorough mixing, she spooned the dough onto the cookie sheet. Waiting for them to bake, we talked about all we’d done that day and their company felt so familiar to me, like being at my aunt’s table. Ruth put the kettle on for tea.

While the cookies were still warm, Bea placed them on a plate and passed them to me.  The three women waited for my response.

The sweet, cinnamon-based, fall-flavored taste had no hint of chicken fat, that had been completely covered by the spice.

“You’re right. They are good,” I responded, feeling that sweet satisfaction of the warm carbohydrate treats, like what Bea had known from her Grandmother’s cookie jar.

Bea and the other Golden Girls of Tibbett’s Point smiled and reached for their cookies.

Of all the places I’d stayed over the decade, I’d had more satisfying meals at that hostel table.  Whether it was eating breakfast with toast made from the Monk’s bread or evening cookies made with chicken fat, sharing food and friendship had been the heart of that kitchen.

Tibbett’s Point had been a great place to celebrate my 10th anniversary as a survivor.  How sweet it was to think of all the memories of special times I’d experienced since that day when my world was turned upside down by a cancer diagnosis.

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How about you?

 What milestone in your life deserves a special celebration?

How would you like to celebrate?

 

3 Things I Learned from Cancer

Now that I’ve been a breast cancer survivor for almost eighteen years, I think back on the three things I learned from going through treatment.  It occurs to me that what I learned from cancer can be applied to other areas of life—even to becoming a parent, like my son and daughter-in-law did just one week ago.  While these are very different in some ways, the things I learned from cancer can be generalized.  I’m not an expert, I’m just sharing my perspective from my personal experience.

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Walking with my friend and fellow survivor, Mary

When you hear the oncologist say, “You have cancer,” it’s shocking and you’re paralyzed with fear. The immediate question is, “Am I going to live?”  After you hear about the type of cancer you have (mine was triple negative) the team maps out your options.  For me, it was eight months of treatment including surgery, chemo, and radiation.  While it’s helpful to get the big picture when you’re starting out, I found it overwhelming to look too far ahead.  So the first thing cancer taught me was

#1– DON’T LOOK TOO FAR AHEAD

 Just focus on the next few steps along the path.  For me, I relied on prayer, asking God to help me with the present moment, giving me the courage for whatever I was going through in that phase of treatment.  When you’re a new parent, it helps to do the same thing.  Sometimes you need strength to get through another night of broken sleep, another fussy evening with colic.  You’d be overwhelmed if you looked ahead and thought about how many nights or evenings you could have like that.

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My son, Brooks– a new father.

When I heard I had cancer, my immediate response was to assume the outcome for me would be like one of my high school classmates who’d been diagnosed a few years before.  Even though I’m a nurse, I didn’t work in oncology and I had very little knowledge of breast cancer, so I latched on to the most recent example I had from another woman.  But I didn’t know anything about her subtype of breast cancer, her specific biochemistry, family history, her body’s unique response to treatment.  My outcome was very different from hers.  So, the second thing cancer taught me was

#2 DON’T ASSUME YOUR EXPERIENCE WILL BE THE SAME AS ANOTHER PERSON’S

That’s also true for parenting.  Just because your friends had a difficult time during a phase of raising their child, doesn’t mean it’ll be the same for you.  Another phase will challenge you more because of your child’s unique personality, your perspective as a parent, other things going on in your family life at the time.  When we focus on the moment and don’t compare our experience, whether it’s with an illness or the challenges of parenting, we have what we need to make it through.

Sometimes it’s tempting for me to make broad assumptions, probably to make things seem more simple than they are in life.  With cancer treatment, I knew I had six rounds of chemo and to make that process seem more familiar, I assumed each treatment would affect me the same: the level of nausea, discomfort with the transfusion, feeling foggy afterward.  But the days were varied and sometimes there were unexpected blessings dropped into my life that distracted me from whatever I was experiencing and provided beauty and relief.  So the third thing cancer taught me was

#3 DON’T ASSUME EVERY DAY WILL BE THE SAME

As a parent, the same kinds of mercies show up: extra help when you don’t think you have the energy you need, your child moving forward to that next developmental step when you thought you were stuck, that first intentional smile when you’re at a point of exhaustion.  The days change, each with its own up and down pattern that forms a beautiful whole.

Whatever your challenge, I hope you’ll find some encouragement in these words and you’ll discover what your current phase of life has to teach you.

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How about You?

What are the lessons you learned going through a big change in your life?

How can you share your experience with others?

 

 

 

 

Tea at Two

Tea at Two.  That’s what we’d agreed on, my new online friend and me, fellow breast cancer survivors from either side of the pond.  We’d have tea near my hotel at Hyde Park in London.  I was excited to meet her in person and to have a real British teatime.  I envisioned a table covered in a linen cloth and a floral teapot and cups.  She’d have to advise me on which tea to choose– since I’m naturally a coffee connoisseur.  I assumed they’d serve scones– hopefully ones with berries.

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But that’s not what happened.

Everything had been going so well– David and I enjoying our first experience of Paris.  By Friday evening, with tired legs from hopping on and off the bus, we would end our visit with a night view of the city from atop the Montparnasse Skyscraper.  We rode the elevator to the fifty-sixth floor and then climbed the two flights of stairs to the observation deck.

Wow, what a view, I thought as we observed the city from such a different vantage point. I felt deeply satisfied that all my planning had payed off.  We watched the Eiffel tower burst forth like sparklers on the fourth of July– much more than ‘twinkling’ like someone had described.  David saw a news update on his phone that London was on high alert for a terrorist threat after an explosive went off in the subway system.  I won’t let anything ruin our wonderful time, I thought to myself, and focused on the sparkling tower, refusing to worry about our trip the next afternoon to London.

It was time to leave and we took the steps slowly– David complaining that his knee was hurting.  Right when we were about to reach the bottom of the first flight, he missed his last step and turned his knee.

I heard him cry out.  Later he told me he saw white light and felt like he would faint from the pain.  After he caught his breath, we slowly made it down to the street and to the taxis for a quick ride to the hotel.  I was dumbfounded by our sudden change. I switched into my automatic ‘school nurse mode’ and thought we have to get him off his feet– elevate, ice, and rest his left knee.  Right when I get the ice pack in place, I see a message on my phone.  My friend can’t meet on Monday for tea; she’s had something unexpected to interfere.

Ironic that I’ve had something unexpected, too, I thought.  I’d done everything for David that was familiar, but the greater challenge was how I was going to handle the unfamiliar; seeking medical care with him immobile, using travel/medical insurance in another country, canceling and rescheduling reservations for the train and hotel in London.  Would he need to fly back early?  And what about my solo journey, would I need to cancel it?  My mind tends to think first of the worst scenario– and that was certainly true that night as I tried to go to sleep.  My prayer was that God would help me to stay present, focus on just what I needed to do one moment at the time.

The next morning, the hotel desk clerk told me about the SOS Medecins– doctors who made house calls.  She contacted them and within an hour a physician knocked on our door.  He provided prescriptions and notes to authorize an extension of our Paris stay– giving me the paperwork the insurance company required.  Afterwards, I set out, to pick up the meds and crutches and then to buy food for lunch.  We’d planned to have a picnic in Luxembourg Garden’s, but that wouldn’t happen now.

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London had to wait

With the cool, fresh air and the streets bustling with Saturday, my mood brightened.  Things were working out, not as I’d hoped, and not ideally for David who’d been in pain. And they continued to work out, with our extra night in Paris, and our brief stay in London.  I was sorry that our trip had been impacted by David’s injury, and sorry that I didn’t get to have that tea time with a new friend.

But injuries, like illnesses, make you slow down and force you to be present.  We’ll always remember this trip, and how one mis-step changed everything and we went through it together.

 

 

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Into a Life

When I was diagnosed with cancer, I was already in a fight for my life—my professional life.  I’d left my secure job as a school nurse to give clinical research a try.  The company where I landed was a toxic working environment.  I planned to escape to something better– once I passed the one year mark.  But when I was almost there, a routine mammogram stopped me in my tracks.  I would be headed to treatment.

I know I’m not the only one.  Others face different struggles when a cancer diagnosis is added to their lives: failing marriages, homes in foreclosure, disabled children depending on them.  Cancer changes the focus for a while—especially the question of whether or not you’re going to live.  But after you’re settled into treatment the struggle that was in place before your diagnosis continues to provide its challenges—and is often compounded with the demands of cancer.

While people soon learned about my breast cancer, few knew about the difficulties I faced at work.  It would be impossible to explain my situation to those without experience with that company—or one like it.  It was easier for them to understand surgery, chemotherapy, and radiation.  They couldn’t see how embarrassed I felt to be in that predicament as a professional nurse of twenty-three years.

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My itchy wig

The Saturday that I was scheduled to have my head shaved, after I had my first treatment with Adriamycin and Cytoxan, my younger sister took me to lunch. When she opened the conversation with, “How are you doing?”  I quickly responded that the first round of chemo wasn’t so bad, Zofran is an amazing anti-nausea drug, and then I launched into my struggle at work.

“They’re watching all the time,” I said and felt my anger build. “Comparing my recruitment numbers to others who’ve worked in clinical trials much longer.”  My sister looked surprised at this shift in the conversation.  I told her that six months in, they’d met with me and said they weren’t sure I was a good fit.  “I’m afraid they’ll fire me and then I’ll lose my health insurance.”  I broke down sobbing, not about cancer, but about the job that at times was worse than cancer.

She’d expected to lend support to her sister with breast cancer—something feared by most women.  While she tried to understand my work stress, that was probably more difficult because she was secure in her job as a school social worker.

Cancer, like other serious illnesses, doesn’t drop into a perfect life.  It often lands in the midst of an already taxed system that’s teetering on the edge.  I think about this now, seventeen years after my diagnosis, considering how I talk with those who are receiving their bad news.

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Wearing my new hair to my sons’ band concert

Because cancer is not your entire life.  You’re still a person who works, has relationships with family and significant others, has financial responsibilities, and health needs besides cancer care.

My simultaneous struggle with that toxic job and cancer was the most challenging time in my life.  It would have helped if I could have shared both struggles, equally—letting go of the shame of that job.

From now on, after I ask, “How are things going with your cancer treatment?”  I’ll add, “And how’s the rest of your life?”

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What about You?

Have you ever had a diagnosis of cancer or another illness that was known to others, while you hid a deeper struggle inside? 

What would have helped you to open up about that struggle?

How can we create an environment which makes it safe for others to share these private burdens?