are we there yet: living with what is

Grandma Murray - Kathleen-

Grandma Murray (Lydia Ann Hooley) and Kathleen at the park – Akron, NY

When I was growing up, my Hooley-Murray grandparents lived near Lockport, New York, just beyond Lake Erie and Buffalo, 550 miles away. And, my Troyer-Stauffer grandparents lived near Milford, Nebraska, 650 miles away. The trip to New York took us across the Indiana and Ohio Tollroads and the New York Thruway. We flew quickly along the south end of the Great Lakes with no stoplights and plenty of full-service rest plazas. An early morning departure put us at Grandpa and Grandma’s house in New York in time for supper.

The trip to Nebraska before Interstate 80 was built was a different story. It was a convoluted maze of mainly two-lane roads peppered with small towns and stoplights across Indiana, Illinois, Iowa, and eastern Nebraska. Instead of eight or nine hours, it took 14 to 16 hours to make the trip. Even now, “interminable” and “endless” are the words that immediately come to my mind. And the question, “Are we there yet?,” constantly echoed from the back seat. The answer echoed back with a sigh, “No. Just enjoy the trip.”

“Are we there yet?,” continues to echo. Many people , knowing that I changed drug combinations in July, ask, “How are you doing? Is it working? When will you be finished with chemo?” The answers: I’m doing well enough on any given day, which translated means: after two complete cycles of the new treatment I know what to expect and have found ways of managing the side effects. Yes it’s working; the cancer marker has been stable or declining, indicating that stable disease continues. No, chemo doesn’t have an end date and will likely never be finished. As long as this treatment combination is effective, treatment will continue.

sheltering skyLike the trips to Nebraska, this can feel interminable and endless to me. Unlike the trips to Nebraska, this does not have an end point. Along the way, I experience despair and joy, tears and laughter, anger and peace. While these are powerful, overwhelming emotions in the moment, they are like clouds that come and go with the wind. I continue to learn that they each have their own beauty and purpose.

For me, the more important question, recently asked by a good friend, is  “Just how do you really ‘live with what is‘?” Living with what is requires knowing that there isn’t a “there” ahead. I do the best I can each day. I ‘live with what is’ by beginning each day reminding myself of those who I love and offering a blessing to each one. I ask myself what I will choose. Will I do what I love? Yes. I will walk, visit with family and friends, paint a mandala, take a photograph of a moment in time, write an essay or magazine column, play with my Murray kitty. Will I accept what is? Yes, I will try.

“Are we there yet?” I’m not “there yet.” And along the way I will continue to ask, “How will I discover beauty and purpose in each season? What do I love to do and will I act to do it? Who do I love and how will I offer a blessing?” Perhaps, the best “there” is the simple, moment-to-moment awareness of the love that surrounds us.

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sunset at cedar bluff reservoir

sunset at cedar bluff reservoir-1767

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hiding: living with what is

kid tent-1700

a 2017 kid tent

When I was growing up, a favorite pastime was to create a play tent. My brother and I would begin by placing a card table in the center of the living room, covering it with a blanket, and continuing to build. By the time we finished, the field of blankets would stretch across the living room, forming a table-height tent. My Mother would sigh and remind us that we had to be ready to clean it up if someone stopped to visit.

But for us kids, the fun was just starting. We played for hours, days if no one was coming to visit. The tent was a place for imagination and stories. Our stuffed animals and toys lived lives of their own. And, best of all, no adult could fit through the narrow “door,” even if they had wanted to crawl on their hands and knees into the tent. As small kids, we experienced the freedom of being hidden, invisible, of  creating and living in our own world.
John - Kath 1963-

I’ve been remembering the happiness and joy of those long-ago play times in the tent. I’ve been thinking about the time before I began writing about “living with what is.” It too was “tent time,” a time of hiding and being invisible. It was a time when Jon and I chose to share my diagnosis and our experiences only with family and close friends.

I’ve come to understand that hiding was a necessary response to having our world plunged into the unknown. In 2014 after the diagnosis of ovarian cancer, I wanted to hide. I’m thankful that Jon supported and honored my desire to hide. Hiding created a tent-like space where Jon and I could safely re-imagine the world. It was a shadowy shelter – half light, half dark  – that enclosed our sadness and despair, joy and hope, reflection and creation. It was a shelter where a new chapter of my own story and our shared life story could gestate and emerge.

I’m not hiding anymore, but I know that shelter exists in any moment that I need it. Jon and I are deeply grateful for family and friends who continue to come and join us in our “visiting space.” In that sheltered space, we sit, visit, talk about what matters to us, laugh, and sometimes cry – imagining new stories and embracing life and the love that surrounds us.

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daydreams of South Park and Wilkerson Pass

daydreaming of Wilkerson Pass-1648

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the geography of here: living with what is

prairie ruin

abandoned prairie house

The Kansas landscape hides stories. Chalk cliffs rise along the river, embedded with fossils: sentinels for the ancient sea that covered this land. A casino with false fronts stands on the land of a vanished culture, whispering old stories of adventure, faith, and loss. A shelter belt of wind-bent trees bears witness to a collapsed house and farmstead, to a land where dreams were blown away.

I have lived in our current house in Kansas longer than anywhere else in my adult life. John Foster worked for the Bendix division of Honeywell. We transferred from Indiana to Missouri to Indiana to Utah to Texas to Arkansas. After John died, I moved back to Missouri. And then, fourteen years ago, I married Jon Friesen and moved to the middle of southern Kansas.

I’ve often laughed, “It isn’t the end of the earth, but you can see it from here.” The edge of the horizon stretches every direction in a circle.  I can travel 100 miles or 500 miles and still feel like I am in the center of the horizon circle. I have run from here and hidden here. I  wrestle with faith here. I live here. I rest here. I will likely die here. The prairie landscape is a container for my here, for living with what is.

The container’s vastness dwarfs me and lets me know that I am not in charge. It holds darkness and light. It holds chaos and possibilities. It holds intense cold and breath-taking heat. It holds violent storms and gentle calm. It asks me if I am willing to let go of my own desires and plans, to be seen and held, to know and love the reality and mystery of “here.”

The prairie’s unending horizon is visible and invisible. Its emptiness and fullness frighten me and invite me to encounter abandonment and loss, transformation and new life. It is an invitation to my eyes, ears, nose, hands, feet, mind, and spirit to be fully present in the world around me. It is a landscape, a geography filled with the community of my people and the love that surround us.

What is the invitation of your own “geography of here”?

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known and unknown: living with what is

mornings at the counterMost of my life is ordinary. There are “big” life events, but it is the day-to-day moments that make up my life’s rhythm.

There is comfort in ordinary time: the comfort of the known. I get up, make breakfast – oatmeal or an egg, walk 1.5 to 2 miles at the Newton YMCA, do some client work, straighten the house, read and write, take an afternoon nap, and find a light supper. Mix in a visit and a few emails and texts. Go for a sunset drive with Jon, our cameras in hand. In the rhythm of the everyday, I experience connection and meaningful work.

There is comfort in ordinary things: the comfort of the known. The porcelain tea cup used every morning, purchased at a tea shop in Deadham, England with John (Foster) and my friends, David and Michael. The beautifully framed Japanese symbol for “courage” that stands on the mantel, a gift from Wendy. The infinitely soft afternoon nap blanket made of four muslin layers that warm and breathe. The weight of my wedding rings on my hands. Noticing everyday things, I experience the love and memories anew.

But today was not ordinary: Jon and I again stepped into the unknown. Today was “chemo day.” Today we learned that the current drug combination was no longer  effective. In consultation with Dr. Morgan, we chose the next “line of treatment,” a new combination of immunotherapy and chemotherapy drugs. Treatments will have a more complex timetable. I experience the unknown – uncharted territory: anxiety and unanswered questions, fear that is designed to protect me. And, I experience a sense of adventure and curiosity, wondering what will be revealed around the curve with the ‘No Passing’ zone.

A blessing for your own life rhythms:

May you be blessed
by ordinary time
and ordinary things.May you be curious
at thresholds holding
fear and revelation.

May you be comforted
by the love that
connects and surrounds us.

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clyfford still: untitled

Clyfford Still - 7-1538

“Black was never a color of death or terror for me.
I think of it as warm and generative.
But color is what you choose to make it.”
– Clyfford Still

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healing: living with what is

I’ve been re-imagining healing in the context of my diagnosis of recurrent ovarian cancer. I’m pondering healing … not curing, solving, or fixing. You ask, “But don’t you want to be cured?” While there are times that I wish the cancer would magically disappear, in choosing to intentionally live with what is, I’ve had to let go of cultural beliefs and questions.

  • “If you stay positive and have a sense of humor, you’ll be cured.”
  • “There is always new scientific research that may produce a cure.”
  • “Just believe, have faith, and you’ll be healed.”
  • “Why did this happen to you; was it something you did or didn’t do?”
2017 Kathleen hiking Grouse Mountain-6356

7/2017 Kathleen hiking Grouse Mountain

In choosing to let go, I am experiencing healing, a journey toward wholeness. My body is not separate from my mind and spirit. I live out my life experience in my body. I am a whole person whose experience is constantly changing. The lesson I am re-learning is that there is no “normal.” There is no going backward to old ways of understanding and being. For me, healing is an ongoing embrace of the transformation of my whole self and experience.

In order to heal and thrive, I am learning again to carry what cannot be changed, fixed, solved, or permanently cured. Most often, life proceeds in an ordinary way. But, life can be rearranged in a moment. Not everything can be repaired, resolved into something positive, or have a silver lining. The unexpected happens. Our bodies age. We all die. Nothing stays the same. And carrying what cannot be changed is impossible to do alone.

What cannot be changed? There are two questions asked by many people who care for Jon, my family, and me: “When will you finish chemotherapy treatment?” And, “What is the prognosis?”

I’ve been having treatments every 21 days since September 2016. It is unlikely that I will again hear the phrase, “no evidence of disease” (NED). I will likely be in some type of treatment for the rest of my life. While the 21 day cycle has its ups and downs, the present drug combination of chemotherapy and immunotherapy has produced a remarkable six months of stable disease.

As for the prognosis, my doctor likes to remind me that all babies are born without expiration stamps on their foreheads. No one can see into the future and know exactly how my life or the ovarian cancer that is part of my body will evolve over time. There are uncountable variables including the length of time that various treatments will be effective along with what new drugs and other treatments are approved. But, she clearly stated that the cancer will eventually kill me … if I don’t die of something else first.

The first card I received in 2014 after the initial diagnosis was from my sister-in-law Krista; she said: “You are not alone.” As I carry what cannot be changed, I know that I do – that we do – not carry this alone. In order to care for each other, we cannot fear the unfixable or incurable. Here are things to do:

  • Be present. I appreciate cards, emails, and texts. They let me know that others are on the journey with me. And, I enjoy short visits – especially when visitors check-in first to see if I have the energy for a visit and are not offended if I don’t!
  • Don’t try to fix. Jon and I are have a treatment team that we trust. They care for me  by treating me with the best, evidence-based medicine available. They support my choices for quality of life: spending time with family and friends, walking and exercising daily, eating a supportive diet, and doing meaningful work. Having family and friends support us, who are willing to not know the answers, is a gift.
  • Love. In my experience with unexpected death and loss, I know that love is the thing that lasts. It shows itself in: being present, listening, compassion, vulnerability, sharing your own story, and in a willingness to live with what is – to be on your own journey toward wholeness.

As for me, I want to be healed, not fixed or cured. I want to be whole, to integrate and accept my experiences. But most of all I choose life – to love living with what is, love myself, and love others. True healing and wholeness are born in relationships within community – in the grace and love that surrounds us.

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continental divide from wilkerson pass

continental divide from wilkerson pass-1598

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south park ranch road

south park ranch road-1600

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