Based in Pittsburgh, PA, Cancer Experience Expressions is an online space for the sharing of cancer stories. 

My story in brief

 I have always held tight to my soul’s deepest yearnings since childhood. From farmer, to firefighter, to architect, to college baseball. Great, my dreams evolved.  Then cancer cut this down, taking my fibula, fifty pounds of muscle and possibly my baseball career. But from all I lost, a loving purpose was found. You never know what the rain will bring!

             After my freshman year of college, I went to the family doctor to have a lump in my right jaw checked out.  My doctor showed a lot of concern and sent me to Pittsburgh immediately to get this lump checked out. I went down, and they did a biopsy.  Hours later, we were in a room awaiting the oncologist anxiously—imagining all the possibilities, in silence with Mom and Dad. Finally the oncologist entered to say I have cancer.  Those words shocked me; I just stared at my lap for a while, unable to react. So, with that, I was diagnosed with Osteosarcoma in my right jawbone, changing my life forever.

            The prognosis was irrelevant because percentages meant nothing to me. I was going to fight to the end no matter what. It seemed like the diagnosis brought on clarity that I had never felt before. I didn’t climb into a cave to cry, nor did I go sky diving. I went golfing that day with my cousin-who-is-like-a-brother, Michael, and we just let the news marinate in the sun.

           Turns out, this diagnosis affected the direction of my life, passions, and education; as it became very obvious the preciousness of life.  I began to live my life with intention; to create the best life possible. My illness experience has dramatically affected my approach. The pains of today never compare to the pains of surgery and eight months of chemotherapy. It’s just irrational to me not to enjoy life.

           After a wondrous and naïve return to health, 2013 witnessed an unwelcome development. Head pain ensued for which I could find no relief.  After a series of misdiagnoses, I was eventually re-diagnosed with osteosarcoma. As my doctors in Pittsburgh did not see surgery as a feasible undertaking and recommended a hospice team, it was time to seek a second opinion.  There was no room for messing around this time; I needed the best. Thinking back to Lance Armstrong’s book, "It’s Not About the Bike", I remembered MD Anderson Cancer Hospital being his go-to when his situation became drastically urgent. Eventually, after weighing options and advice, we caught a plane to Houston, Texas.

          Honestly, I was in rough shape after travels there. It was as if I was hanging on by one final thread that broke right at the front doors, as I vomited all over the concrete right out front. While there was some frustration, getting an IV and hospital bed was much needed. Going into that initial appointment, I expected them to be ready for us with a prepared treatment option.  However, upon arrival, it became apparent that I was badly misunderstanding how things would go. They didn’t have much of a clue what we wanted from them, as they hadn’t even seen my recent MRI which led to my diagnosis. The total lack of individualized treatment and priority disappointed me. I was just the next guy in line, and they didn’t know much of anything about me. After getting an MRI board and discussions among doctors, surgery still seemed quite difficult. Chemo seemed like the best option to get things stunted for surgery. With that, I returned home to do some chemo with the local oncologist.

        After a grueling surgery and a round of radiation, I had some choices to make. As it were, cancer patients are often faced with terribly difficult decisions.  At the end of the day. it is the ill person's responsibility to make sense of the doctor's input to pick a treatment route. I've learned that there is not always an obvious "right" answer. At this point, I had a lot ahead of me; my most powerful dream began to germinate at that time.

        Anyways, it was off to Houston, and I wasn’t sure exactly where, why, or with who, but I know I wanted to travel for other reasons after that Houston trip. A marriage to this chemo would keep me stagnant; deep down, I was not enrolled in the cult of chemo which declares it the “magic bullet.” Why not promote a comprehensively sound inner health which manifests through my body favorably, making it able to defend against malignant cell growth?

        As it were, a shift in my way of being was a necessity.  I had to find out why the hard way: I am not the exception. The breath of life exhales a reflection of its inhale, no matter what.  So a mindfulness of what I am consuming: nutrients, relationships, thoughts—has become a very important part of my treatment. On occasion, I enjoy beer or a glass of wine. But I do not act like the damages of excess do not exist.  Possibly the most important change is in the way that I think about the food that I eat. Diet can either be means to healing or disease, depending on the chosen foods. Certain foods can nourish the body in ways that help rebuild after the destruction treatment can bring. This is where you get into your proteins and vitamins and all that good stuff. There are also foods and herbs that can help stunt a cancerous tumor’s progress. Sencha Green tea, broccoli, cabbage, dark berries and dark chocolate are just a few examples of this.

        With that in mind along with clean scans, I went from the M.D. Anderson suggestion of preventative chemo to a second opinion at Cancer Treatment Center of America in Zion, Illinois. I called them after learning about their reputation for having a stellar holistic approach. They were compassionate, exceptionally rational and impressively accommodating, and my skeptical side wondering, “What’s the catch?” The young oncologist at CTCA basically echoed my highly-touted MD Anderson oncologist, suggesting the same chemo. Her reasoning was convincing, but there was a lingering skepticism. My gut was telling me she was passively aligning with the opinion of the more sophisticated and prestigious oncologist.

        However, with two oncologists saying the same thing, what can you do? This brought me back from leaning far left toward alternative medicine, right back to the middle—a real tough place to be when making a big decision. Both ways seemed like they could be what’s right. Something didn’t feel right about the thought of going into chemo, making myself feel so horrible when there is only a chance that it will work, as well as chance that it could cause secondary cancer.

               Eventually, I headed to Cleveland Clinic to talk about immunotherapy possibilities and/or starting chemo with them, as their integrative care list seemed quite impressive online.  I was convinced that I would tolerate chemotherapy much better in conjunction with certain alternative treatments such as diet, massage, acupuncture, and Reiki. Much to my surprise, the oncologist felt as if there were insufficient statistics to prove the harmful methotrexate to be worth it. He suggested a lifestyle change until better technology comes out. He was right in line with my thinking all along. It was such a life-changing experience because it affirmed my deep instincts.

        While all this unraveled, one thing was clear: I had to find confidence in my decision and remain at peace with it. After starting the 2014 semester at Thiel with a possible medical withdrawal on the horizon, sifted through several class variety options, I pieced together a wonderful schedule slating me to pick up an individualized minor call medical epistemology and philosophy of religion. This was inspired by a wish to explore ways humanity applies truth to matter's as practical as medicine to those as abstract as religion.  After further cultivating my philosophical acumen through a master’s degree at KU Leuven in Belgium, this intention evolved into a commitment to empowering cancer ill people to take on a responsible and reflective approach. This involves staying true to the character of individual needs when dealing with infirmity.

        As I’ve continued with philosophy into graduate studies, I’m still moving on dreams. As I’ve grown, going to work every day as a professional baseball player is not what makes my heart sing. Now it is the value of the first-person experience of illness and using my skills and experiences to help people find meaning within their suffering. This has taken form as a non-profit organization called Narrative Dimensions which advances a culture of caring by helping people discover and express their personally unique experience of health and illness.  We promote personal narrative, self awareness, authenticity, and resiliency to enrich the lives of all those touched by illness, including patients, caregivers, and health care professionals. Our primary program is the Living Well with Illness Workshop for people with all types of chronic illnesses who want to gain perspective on the ways chronic illness has changed their lives and how they can improve their ability to adapt.  At the end of the day, our vision is a culture of caring where patients, caregivers, and healthcare professionals, together, understand and respond to three big questions:

1. How has illness impacted your life?

2. Which of these impacts has affected you the most?

3. How do you wish to live from here on out?

 

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Power of telling

Narrative Dimensions