Contemplative Photography

My favorite season has always been Fall: vivid colors of falling leaves against the tourquois sky, warm days, crisp nights – sleeping under a cozy comforter with the windows open. My memories include drives along Lake Michigan with my family to choose the juiciest Michigan apples to take home to make applesauce. They include the surprise of seeing my Dad get his one and only moving violation ticket near Michigan City for running a red light. In his defense, he thought it was a four-way stop – the only type of traffic signal in my small hometown. Nowadays, the crisp air and falling leaves mark a new transition.

In Kansas, the last week has been cloudy. And with the early evening darkness caused by the shift from Daylight Savings Time, the weather and external environment are reflections of my journey. For in the last week, my diagnosis has changed from stable disease to end stage, aggressive ovarian cancer. I’ve felt fear and pain. I’ve been embraced with kindness and compassion. I’ve known anxiety and anger. I have laughed and cried.

“Living with what is” is the ultimate challenge. It is the dancing “and” … . Unless I seek to fully know the pain and suffering, I cannot fully know healing and joy. Pain and healing, suffering and joy, grief storms and  peaceful calmness … I choose to allow the dancing “and” to weave the threads of my life, to fully expand my heart and soul. On Sunday afternoon as I sat among the people who will be my caregivers through my final transition from this life, I was overwhelmed by the enveloping grace and power of the love that surrounds us.

Most 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:

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?”

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.