9 months ago
Wednesday, September 26, 2012
If I had my way, I would apply for a position at the Seattle Cancer Care Alliance so that I could work with patients and staff using my skill set as chaplain/ordained pastor/spiritual director and my context as Acute Lymphoblastic Leukemia patient and survivor of bone marrow transplant. Washington Island appears to be a very good place for our family at present. So, instead of moving to Seattle. I will move into my artist's studio (a.k.a. writing cell) and complete my "Gospel According to Cancer." God help me.
The Door County Advocate, September 8, 2012, headlines "Not Giving up. .....There has been a constant stream of visitors since Johnson's 13-year-old grandson Bo came home from Children's Hospital of Wisconsin in Milwaukee last week -- not because his leukemia had gone into remission but because doctors now say it cannot be beaten........" On my way to Light the Night Walk with the Leukemia/Lymphoma Society in Appleton, I stopped to share walk materials and my greeting with the Johnson family at Al Johnson's restaurant in Sister Bay -- the restaurant known for goats on the grass roof and a grandson who is not giving up.
So, a lady comes into Bread & Water and says; "When did she die?" I'm standing in front of her in an apron by the front desk. "What do you mean?" I answer, completely not catching on. "The woman who owned this place," the guest explains. "How long ago did she die? We heard she had cancer." "That's me. And, I'm not dead," I answer and stand taller to be counted.
Returning to work one year out from transplant, I put one neuropothied foot in front of the other and felt that just showing up and getting through the front door at Bread & Water was accomplishment enough. Two years from transplant, I became more daring. With help from volunteers, family and craftspeople, we tore out a closet in the flagship lodging room at Bread & Water and created the first wheel chair accessible bathroom in a lodging unit on Washington Island. We tore the siding off the Main Road front of the Bread & Water building and hired Kirby Gunnlaugsson to mason the facade of the building with Island stone from ground to roof. We ripped and hauled away the broken and uneven concrete apron in front of the building and poured patio for outdoor dining. We updated and remodeled the kitchen in the Carpe Diem apartment. We created a Paddling Museum with a fresh concrete floor. Blue stain makes the space look like ocean as we reclaimed 400-square feet that used to be office and storage. Expenses for these initiatives went onto my credit card with hope that the summer season could pay back the expenditures. When my credit cards maxed out, I took a loan on the equity of my car. One friend viewed me as "out of control" and quit coming by. Many toured the dust clutter of remodeling, shook their heads and said "it can't be done." One said "get more help." Another quipped "start in one corner and finish one project at a time." Many nights I awoke in the dark and wondered how to get through and could not go back to sleep. The summer season is coming to a close now at Bread & Water. From Memorial Day to Labor Day, I worked seven days a week. The bills are paid. The projects concluded. Cancer is mandate for living large. Why wait?
Shammond, Kayla and Steven accompanied me to the Fox Cities Stadium Light the Night Walk in Appleton on September 14. Hundreds of people attended the fund raising walk for the Leukemia & Lymphoma Society. Our team called ourselves the "Washington Island Miracles." We did no fund raising. Just getting to the walk seemed to be enough this year. Food, music and fireworks made for a lively celebration. Each participant was given a lighted balloon to carry on the two-mile evening walk. Red balloons were given to support people; families and friends of those with disease. Yellow balloons were carried by participants who knew someone who died. White balloons were handed to survivors. I carried a white one. I kept looking up and seeing the light in my balloon against the star-studded night sky. There were only a few of us white balloons in the crowd. I walked side ways and backward in the parade and greeted every person carrying a white balloon. Many of us cried and hung onto each other as our white balloon strings tangled in the evening breeze. One little boy had on a t-shirt that read; "You can't scare me. I've beat cancer TWICE." I did not hug the little kid. He marched on with his white balloon and "don't hold me back" attitude.
I was intimidated going in for my oncologist check up/check in and more intimidated going out. "I'm two years out from transplant now. Are my chances getting better for survival?" I ask. "ALL is the "sneaky" one," Dr. Jaslowski reports. "It can come back at any time."