Tuesday, May 10, 2011

The Gospel According to Cancer, Chapter One

Chapter 1, Nativity

In the one-hundred-year- old farmhouse where my great grandmother raised six children, I lay dying. By late afternoon, a doctor would tell me that, without intervention, I would be dead in two days. I only knew I was incredibly tired. Each breath was ambitious effort; still, I planned to summon the energy to cook dinner after our children came home from school in late afternoon.
My bed faced the south window on the second floor of the old house and offered a view I knew by heart. The mid-section of a white pine twice as tall as the house was at eye-level. The west window of my corner room famed a wall of thick cedars so tall I could not see the tops even when flat on the bed looking out. My grandpa Jack planted the trees before I was born. An elderly neighbor told me Jack towed the trees behind his Buick to the big white board house. I pictured Grandpa bending over with his foot on the shovel excavating each hole, then kneeling as he cradled the root ball into the ground. He planted a straight line of trees at the back of the house. Could he have known that those trees would eventually shelter six great grandchildren, my children, and shield the drafty farm house from the northwest winds that cross Green Bay? The small trees planted more than sixty years ago now block full force gales.
Perhaps the security of the old house, my cozy perch peering into branches and the hearty health histories of my ancestors contributed to my inability to believe myself sick. But, something had to be wrong with me. Even rising from my bed for a drink of water took an hour of wishing before my body could comply.
My husband, Joe knew I needed help. He stood by the bedside pondering a decision that will save my life. I argue with him.
“Joseph, I was just there yesterday,” I protest, referring to my trip to Door County Memorial Hospital in Sturgeon Bay. “The nurse practitioner said it’s viral. There is nothing they can do. She told me to just gut it out and I am.” Yesterday’s office visit was not the first attempt to diagnose my fatigue.
The nurse practitioner who examined me had simply repeated the viral-nothing-we-can-do-mantra I had heard during three previous office visits. In response to my increasingly labored breathing, she said; “You have probably been lying around too long. Go take a walk.” On my way back to Washington Island, I stopped at the grocery store to stock our pantry at home and take her advice. I leaned on the shopping cart to steady myself.
Joe insisted as he sat on the side of our bed. “We are going back to the hospital today,” he said. “I’ve never seen you like this before.” Lying in a fetal position within the blankets, I could hear his voice but I did not look at him. Eventually, he went downstairs and left me alone. I did not feel like taking a drive. What more could the hospital do? Joe transporting me to the emergency room was his idea, not mine.
Submission is not a word that I like. Thank goodness a highway commissioner long ago approved “yield” instead of “submit” for yellow highway signs. Thankfully, I can make a routine trip across town without becoming irritated by road sign hot buttons. I was too tired to assert myself and fight Joe’s insistence that we return to the hospital.
Mary, the mother of Jesus made an exhausting journey to Bethlehem that wasn’t her idea. I had heard her story since I was a little girl in Sunday school. As an ordained United Methodist minister, I looked to Mary as a scriptural example. Ordered by law to be counted, Mary endured the trouble of transport. I wanted to stay where I was and sleep but soon I would be counted. My body recorded.
From my bed, I could hear Joe on the phone to the Washington Island Clinic. “Her face is gray,” he explained. “She is curling up and seeming to grow smaller. She is hardly talking, spent.” He was silent for a few moments listening. “O.K.,” he responded. “Yes.”
The November sunshine coming through the window still had strength. The children were in school. I could lie in bed for hours more before they needed dinner.
Joe’s footsteps coming up the stairs were unmistakable. Unsuccessful knee replacement years ago resulted in one stiff leg that drags. His “good knee” still needed replacement too, tut; he wasn’t ready to try more surgery any time soon. The railing creaked as he pulled his body up each step.
I used to boast, “I’m never sick.” At 58, I described myself “healthy as a horse with an iron stomach and unlimited energy.” My mother used to say, “Valerie can run circles around people. She gets the job done before other people even think about it.” Dad always told others, “Let Valerie do it.” These life messages were reinforced by my life as an athlete. From 1986 to 1989, I paddled 21,000 miles from the Arctic Ocean to Cape Horn in a solo canoe. During that three-year expedition, I adopted and practiced the philosophy of my paddling partner: “You don’t have to go to the bathroom; it is all in your mind. You don’t have to sleep; it is all in your mind.” Even as an aging athlete, my muscle memory knew endurance.
Gutting out increasing fatigue had become my new normal. I was slow to realize that my affliction was serious. On October 23, a few weeks earlier, I flew to Virginia to key note at the American Canoe Association Annual Instructor Conference. ACA staffer Chris Stec picked me up at the airport. I fell asleep in his car enroute the hotel. My presentation was that evening. I asked for a wake-up call before my turn on the program. Fifteen minutes before walking to the podium I entered the auditorium and lay down on the floor at the back of the room, my head on my lap top. After being introduced, I got up, walked down the center isle and took the microphone. Fortunately, it wasn’t the first presentation I ever made. My usual enthusiasm was subdued, but my message bolstered by Power point and script was solid. When I finished speaking, I escaped to my hotel room and lay in bed for two days before gaining strength to board a plane for home. Feeling tired had never stopped me before.
“I’ve got the car ready,” Joe said as he re-entered our room on that bright November 10th morning. He helped me stand. I had fallen asleep the night before in my clothes so there was no need to dress. Joe took my arm and walked with me down stairs, through the house, and to the drive way. He opened the passenger side car door and tucked me in. His was surely the tenderness of Joseph setting Mary on the donkey for the ride to Bethlehem. In our circumstance and era, Joe reclined the leather seat and covered me with blankets. Driving was usually my job. The passenger seat was new to me.
Washington Island is a thirty-five square-mile island in Lake Michigan. Death’s Door is the name of the 3.8-mile open water passage between the Island and northern tip of the Door County Peninsula mainland. When weather permits, the Washington Island Ferry crosses the passage throughout the day. Whenever I’m on the ferry riding over and back, I position myself in the bow to watch the waves. Splash and spray remind me of baptism. During winter months when spray freezes on my coat, I hold my footing on deck, bundled in snow suit, muffler, and gloves rather than ever retreat to car or cabin. Something was definitely wrong with me as I lay motionless in the car under my covers.
The trip from Washington Island to the hospital at Sturgeon bay took about ninety minutes. When we arrived at the emergency entrance I had settled deep into the blankets. Two people helped me into a wheelchair and pushed me to the front desk. I could not say my name or voice why I was there. A room was provided for me at the inn of urgent care, no waiting. Dr. James Murphy, a long distance kayaker I recognized from a marathon race around Washington Island, attended to me immediately. “We are done gutting it out,” he said. “We are going to find out what is going on inside you.” A blood draw happened. When Murphy returned with the laboratory results he described a significant problem in the CBC. It showed pancytopenia with a white blood cell count at 900, hemoglobin at 4.6 and platelets at 13,000. The low-end of normal would be a white blood count of 4.3 thousand, hemoglobin of 11.5 and 150,000 for platelets. In his words; “Your blood is all messed up.” What the doctor said sounded serious but I did not feel afraid. Joe stayed by me as the doctor and technicians gathered information with chest x-ray, EKG, urinalysis and a general physical exam.
In the story of the Nativity, a shepherd boy with a flute whose presence and music accompanies Jesus’ birth. Dr. Anthony Jaslowski, a Green Bay oncologist/hematologist, accompanied me in the emergency room, I thought of him as the shepherd in the manger. He harmonized, integrated, interpreted and presented my test results. I had one chance in seven for Dr. Jaslowki to find me in the emergency room on the one day out of the week he was in Sturgeon Bay providing regional cancer care. Rarer odds are a doctor specializing in blood disorders walking past the emergency room door and looking in. Dr. Jaslowski ordered an ambulance to take me to St. Vincent Hospital in Green Bay and a bone marrow biopsy that night.
The trip to the larger hospital in Green Bay was no donkey jaunt. The piercing squeal of the transport sirens would wake any cattle lowing. I lay quietly while a technician sat bedside me monitoring my vital signs during the 47 mile ride. Joe had to head the opposite direction, returning to our children and home on Washington Island.
Room 904 at St. Vincent Hospital was ready for me. Hospitality included a bracelet with my name and birth date on it, a tooth brush, box of Kleenex, red call button, television remote and an ice filled cup. The activities of setting lines, taking vitals, asking questions, obtaining my signature, introducing the menu, writing my name and the nurses name on the dry erase board, fetching water kept the room bustling. I watched. When I wanted to use the bathroom, I was not allowed to walk by myself. A nurse presented herself as my bathroom buddy. I leaned into her body gratefully. I was too weak to get up from the stool. A nurse wiped my bottom and helped me back to bed.
It was dark outside the window when Dr. Jaslowski arrived. “You are missing dinner with your family,” I mention. “You too,” he says. A blue sterile wrapped package and other equipment are brought in, and I am readied for the bone marrow biopsy. I follow the instructions and lie face down on the bed. A nurse scrubs my hip. Several nurses arrange themselves around me, an unfamiliar team that I was now part of. “Squeeze my fingers when you need to as hard as you need to,” one nurse says. Jaslowski gives my hip a deep shot of something that makes me feel like a horse is stepping on and standing over me. Jaslowski talks his way through the insert, punch, draw, and all that is happening behind me. “In a moment, there will be a deep pull, and a sharp, serious pain down your leg,” he said. The pain never came. I squeezed the nurses’ fingers anyway. I am yielded and not afraid. Jaslowki went home for the night, promising to see me in the morning. My bone marrow samples were claimed and transported.
On the wall opposite my bed, on my room’s dry erase board, the nurse wrote “Very good care is: “Keep me informed,” Then, she left me alone. My bed faced a wall decorated with two identical clocks, two television stalks, two calendars, and two dry erase boards. Though the space appeared outfitted for two patients, there was only my bed in the room.
Next morning, nurses came to claim more of my blood in vials that will become a window on my body’s inside world. The magi arrived in white coats to attend. Each doctor bore a special gift having followed the star of their vocation which momentarily hovers above my bed. Instead of gold, frankincense and myrrh, the Magi bring pills, Lidocaine and syringe. I imagine Mary laying her weary body down. I consider Joseph saying “this isn’t my child looking like this, this is a middle-aged woman.” I am exploring a new life in a strange world, the new kid on the ward in hospital pajamas. Give me swaddling clothes or at least my cozy robe from home. I would rather be one of the spectating animals in the barn, asked to move over and make room. The charge nurse plays the role of inn keeper’s wife as my gurney goes past her watchful eye. Silent night without my children asking for help with their homework. No one asking if I would tuck them in. Holy night to find myself in a crèche with God an inn keeper where stars had given way to florescent lighting.
Without knowing it at the time, I am becoming more available to God. My agenda plans, and to-do list that seduced me into thinking myself in charge are far away. When the nurse wiped my butt, I knew myself fully human.

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