Thursday, August 18, 2011

One Year Out

One year ago, today, August 18, I returned to Washington Island from Seattle Cancer Care Alliance. Our six children were with me. We flew from Seattle to Green Bay and reunited with Joe at an close-to-the-airport hotel named the Settle Inn. Joe arrived in the Green Bay Shuttle, after making passage on the Lake Michigan car ferry, the Badger from Ludington to Manitowoc. We had been apart for five months with me enduring the transformation of a bone marrow transplant. Joe held my face in his hands. He promised to never let me go. He is keeping his promise.

What has happened in a year?

Our house in Michigan sold after five years without an offer. We purchased a twenty-five acre farm on Washington Island with three barns and a bedroom for everyone.

Though we had a difficult winter with the move and concerns with my recovery, we met the mountain of re-opening Bread & Water June 15. I am engaged in ministry with an all-teen (no one over 16!) staff operating the cafe, lodging and kayak tour business. More than opening, with help from Billy, Neil, Anne and Joe, we upgraded the commercial kitchen, created an apartment that sleeps eight and made other improvements.

The 1918 home where we were living, my great grandmother's house on Island is being restored by volunteer Sue Dompke and opened July 4th as a Butterfly Museum with munching caterpillars inside and monarchs hatching for release. Emily Dompke serves as naturalist and docent for the museum supported by L.A.U.N.C.H., Inc and encouraged by Irene Mostek, the home owner.

The Washington Island Canoe and Kayak event, www.washingtonislandcanoeandkayakevent happened again in June! with the winning marathon racer time circumnavigating Washington Island in 3 hours, 29 minutes.

Joshua was chosen for the All Star team and made history by hitting a first-ever home run out of the Little League park.

Micala turned 14 and is planning a solo trip to New York to visit cousin Hannah.

Shammond is the yard man and in charge of driving the riding mower over the farm expanse.

Korrina invites sleep overs and creates her own paper dolls.

Kayla tends the animals and is looking forward to her horse, September 1.

Steven became a creative cook at Bread & Water.

The best part of summer was visits with friends and family. Jin, Braydon, Emily, Gary, Sue, Tina and the Ervins, the Klingenberg reunion, Nate, Billy, Neil, Anne, Joe, Lynette. Marianne and Mark, Hannah, Becky and Mary, Alison, Charlie, Gary and Devonte. And, our growing friendship with Sue, Autumn and Emily.

The long and short of this is gratitude. I am a walking miracle.

Tuesday, May 10, 2011

Gospel According to Cancer, ChapterTwo

Chapter 2, Water into Wine
“Patient” became my new name. My nickname was; “Bed 1.” While patience is considered a virtue, I learned that being a hospital patient is seductive. The longer I lay in bed the more I felt like lying in bed longer. Day by day, with head on pillow, I was the room centerpiece exploring life on the edge of death. Press the red button and nurses hustle to meet one’s needs. When I did not initiate a distress call, staff came anyway to make sure I was breathing.
My blood tests showed 90% abnormal cells, peripheral blood with marked pancytopenia and occasional circulating blasts. The results of the bone marrow biopsy from November 10 showed pre-B cell ALL with cytogenetic abnormalities including derivative chromosome 11 and 18 and abnormalities of chromosome 13. The complete test results did not arrive until November 18 from Quest Diagnostics but by November 12, Dr. Jaslowski knew that I had cancer. The name of my disease was Acute Lymphoblastic Leukemia, nick named: “ALL.”
Dr. Sarah Lulloff diagnosed an e-coli infection that seriously complicated my condition. If the cancer did not kill me sepsis could. Before chemo treatment began, I received seven blood transfusions, constant saline IV drip, and potent antibiotics. In the first several days, my body weight gained twenty pounds of fluid.
The hospital provided information booklets about ALL, but particulars about my situation were missing. All the books suggested a calm, unanxious approach, and advised: “talk with your doctor, get a second opinion, and take your time making decisions about the treatment plan that is right for you . . . Choose a health care facility with care.” By the time my disease was diagnosed, there was no time for office visits, second opinions, or shopping around. My case required immediate action. A damsel tied to a railroad track with a train bearing down on her body needs instant rescue before questions like “who are you?” and “where are you taking me?” matter. In my case, these questions were mute. Leukemia, a disease of the bone marrow, had hit my epicenter, destroying my body’s capacity to make blood. The doctors were engaged in life support and damage control.
A chaplain came to my hospital bed with an Advance Directive for me to read and sign. I considered my choices. Did I want to be resuscitated? I was weak, tired and peaceful in exhaustion. I had no energy for returning to the front lines of life, so I signed the Advance Directive instructing others to just let me go. The chaplain sitting with me nodded and said, “That is how my directive reads too. I don’t want to fight when God taps me on the shoulder and whispers ‘It’s time.’”
Dr. Jaslowski kept coming by, asking “How’s it going?” and inviting me to persevere. He scheduled the Larsen protocol of chemotherapy to begin on the third day of my hospitalization, Friday, November 13, and named the 13th “Day One” of treatment. When he made the order, there were no chuckles or gasps about bad luck from staff. When Dr. Jaslowski designated Friday the 13th as my new beginning, the uphill battle became even more clearly defined. Instead of discouraging me, I was inspired. Superstition had no place at bedside. The day identified with bad luck for many could be claimed as a blessing for me.
I was not the strongest or the youngest person to fight ALL, but I had excellent credentials as an underdog. Twenty-five years ago, a senior citizen and I raced the 2,348-mile length of the Mississippi and set a Guinness World Record, beating the British Royal Air Force.
The athlete in me knew to never give up. When paddling to Cape Horn, a bear collapsed my tent with me in it on the Arctic tundra. Alligators surrounded my canoe in the Matto Grosso of Brazil; illegal alligator hunters with guns circled me on the Paraguay River in the Pantenal. An anaconda swam next to my canoe and chased my boat on the Rio Madeira. My practiced mantra was: “Hit the wall, push body and emotions past the wall, ready self to hit the next wall, push through again.” My canoe remained a constant while I felt like a battering ram against 21,000 miles of impossible.
“You can die during induction chemotherapy treatment,” the doctor said during morning rounds. “Settle your affairs,” he advised before treatment began. Using my cell phone from the hospital bed, I called the Town of Washington to buy a burial lot. I spoke with Mr. Casperson at the funeral home in Sister Bay and made my wishes known to relieve Joe of as many decisions as possible.
The day after I signed the “do not resuscitate” page, a different hospital chaplain came by my bedside and inquired about my Advance Directive. When I explained my decision as “do not resuscitate,” he asked me to re-think my plans. “You have everything to live for,” he said. “There is a lot that can be done. Don’t let life go so easy.”
I took another look at the Advance Directive. As pastor, I had sat with many families at the bedside of a dying loved one and heard them say; “You can let go now.” For me, the letting go image is not a positive one. Letting go is a way out but too many times I was the little kid holding onto a toy when the bully tried to pull it out of my grasp. “Let go,” she shouted. “No,” I said, holding on more fiercely. When I did let go, I felt wimpy, cheated, and lost. When I met death, I did not want to let go or let up but hang on and give all until the passage became welcome.
If I had a choice, I wanted to meet death head on like swans remembering how to fly. In springtime, the Chubut River in Argentina is a flyway for black-neck swans, flamingoes, parrots, geese, cormorants, and other birds. The River is also water highway for west to east boat traffic across Argentina. In my canoe with the prevailing Patagonian west winds gusting 30 knots at my back and the glacial-fed current flooding downstream from its source at the base of the Andes Mountains, I floated more than paddled toward the south Atlantic.
Riding the swift current around a river bend, I surprised a large flock of black-neck swans resting on the river surface and floating toward the sea. My canoe posed a threat to the birds and they panicked. Hundreds slapped their feet at the water and flapped their wings against the surface trying to get away but they could not take off with the wind behind them. The wind ruffled their feathers as they scuttled downstream kicking up water and screeching. As my canoe herded the frightened swans downriver it was as if they had forgotten how to fly.
Only a few turned and faced my oncoming canoe. With their necks low and stretched they walked on water, rushing toward my bow, gaining speed until they lifted off the river and flew into the wind.
In the visitor chair, the chaplain watched me rip my “do not resuscitate” directive in pieces and sign another that gave everyone the right to try anything and everything on my behalf as long as I had a chance. I was weary, but instead of giving in to fatigue and resignation, I chose to rest with my commitment to live.
Before cancer, I had avoided even aspirin. Now, the big gun medicines were arriving in pill cups, syringes, and drip bags. I wanted a miracle. All my life I had heard that Jesus made miracles.
The first miracle of Jesus is the wedding in Cana where he turned water into wine. If I picture myself at the wedding as a guest, I am not the life of the party. I am walking toward the big clay jars, peering inside. I can’t see bottom. The jars are filled to the brim with wine, but I refuse the drink offered by the steward and prowl the perimeter of the party watching the faces of first century wedding guests. I do not fit in. No one else is wearing hospital pajamas and acrylic socks with rubber non-skid strips. I explore the scene, wondering what truth I can glean for my dire condition.
In the gospel story, the mother of Jesus voices a brewing crisis. The wine is running out though the celebration is in full swing. All the players are in denial except mom. The mother of Jesus seems a thoughtful busy body keeping tally of stock and supplies. In the gospel story, she points out what is running short without criticizing the host or making small talk. She pleads the case by simply noticing the empty jars and naming them. She knows something can be done; her son may intervene for good. She glimpses the more-than-meets-the-eye potential like no other mortal. In my pajamas, I hope to be like her, counting on Jesus to set the world right. If the mother of Jesus was in my hospital room, I imagine her looking around to see what needs to be done, seeking her son, and tapping him on the shoulder. I want to follow her example in prayer.
In the Bible story of the wedding, Jesus protests. Perhaps he is enjoying the party and does not want to think about his divine calling. I wonder if Jesus even knew he could do it. Had he practiced his power in private or would he be as surprised as everyone else when the wine appeared?
Jesus’ first miracle forecast miracles to come when the sick would be healed, when the lame would walk, when prisoners would be freed, demons cast out, and the tomb empty. The appearance of fine wine at the Cana wedding was a revelation of abundance overtaking want. When it was his time, he would turn bread into his body and wine into his blood. Maybe Jesus could turn the poison of chemotherapy into an elixir for health for me.
I found comfort in putting myself in place of the jars. I am a vessel, my body a crucible of flesh. The empty parts of me are noticed. Throughout those early hospital days, even when the last drop of energy seemed drained from me, refreshment was poured in the form of encouraging visitors, hopeful blood test results, another sunrise, a get-well card, or surprise. The ordinary turned into abundance. When scared, I was given courage. When in denial, I was ushered another step further to embrace truth. When I least expected, sweet water flowed from emptiness and turned continuously into the fine spirits of fellowship and restoration.
I sought out water-into-wine moments. Each time the reality of ordinary, even the extraordinary trauma of cancer was recast. I called my friend Marianne Fons, a consummate Scrabble fan, crossword puzzle whiz, and wordsmith. Within a few days, she sent me her take on my diagnosis in the form of a prayer using letters from the medical term for Acute Lymphoblastic Leukemia:
For Valerie
A woman such as you, receiver of many blessings,
Can, I know, courageously
Undergo aggressive chemotherapy
Even long term treatment, with grace.

Long, gray, hospital days include
Yearning for distant loved ones,
Micala, Korrina, Kayla, Steven, Josh, Shammond, Joe, and others,
Pressing hard on your heart, and
Hindering other plans, yet at the same time,
Opening waterways upon which you may travel in new, different
Loving mother, wife, daughter, aunt, sister,
Athlete, teacher, pastor, guide,
Sweet, loyal, longtime friend of my heart,
This is my message, written by me, but
Included in the prayers of hosts:
Cancer cannot kill you today.

Let new blood fortify you, medicines
Edge out unhealthy cells, and, as you daily
Undertake your own mindful meditations,
Keep your eyes on the future and
Endeavor to see both sunshine and shadow.
May you rest and heal in the comfort of this quilt, and
In our maker’s powerful and loving embrace.
Marianne’s prayer poem took a bite out of Acute Lymphoblastic Leukemia and made it mine.

* * * * *

To prepare my body for chemotherapy, during which injections of potent drugs damage small veins, the doctor ordered a Central Venous Catheter. The PICC allows chemotherapy to enter the bloodstream where larger quantities of blood dilute and distribute the injection. The PICC becomes the portal for chemo and other drugs to access my heart’s mainline. The line became my blood draw site as well.
For my PICC rendezvous, a transport staffer put me in a wheel chair and pushed me toward the elevators. In the basement procedure room, Nate with a sparkling stud earring greeted me. A nurse held my hand as I was positioned flat, face-up, draped and scrubbed for the central catheter insertion.
A doctor arrived to explain and supervise the procedure. I was numbed, cut, then threaded with a flexible tube that poked into my upper arm and lodged in the large blood vessel leading to my heart. An x-ray showed the doctor the position and progress of the line in my arm and into my heart. The end sticking out of my upper, left arm was a double-ended catheter with claves accessible by those in the know. I endured the procedure without a general anesthetic, asking questions and holding tight to the hand holding mine. “Just be careful not to pull the line out,” the nurse cautioned, as the technician pressed a dressing on the wound.
On my way back to my room, as the transport aid pushed my chair, I noticed a statue of Jesus in the hallway. The figure’s arms are outstretched. An ornate carving of the heart of Jesus is raised and evident on the smooth wood of his chest. I think of my heart with the line into it newly affixed. Jesus has no line or portal tethering his, but I suddenly remembered the words of an African American hymn; “Jesus Is On the Mainline, Tell Him What You Want.” I whisper to the statue: “I want to be healed.”
The hospital staff seemed to know what they were doing in preparing me for chemo therapy. I wanted to prepare myself too, so I requested permission to visit the chapel. My doctor gave the o.k. for me to leave the floor, a hospital staff person came with a wheel chair. I was covered in warm blankets and pushed with my IV pole and medicine bags to the ground floor chapel. I even wore a mask because my blood counts were so low that I was susceptible to infection. The chapel was an elaborate Catholic worship space with brilliant stained glass windows depicting sunflowers. In the windows, I saw shapes that reminded me of canoes. My staff buddy pushed my chair down the center isle toward the front and set the wheel lock. Then he retreated to the back of the chapel to wait. No one else was in the chapel. The red glow of the eternal flame lamp hung on a golden chain. The altar steps were marble, the rail a polished wood. I could not rise or kneel. I simply sat there as reverence overtook me. I enjoyed the quiet. I kept my eyes open and asked God’s forgiveness for the killing spree soon to overtake my body with the infusion of deadly chemo.
Next morning during the doctor’s visit, I asked for and received permission for a shower. A nurse buddy was assigned. She unleashed me from my IV pole. The PICC line opening in my upper arm needed to be water proof. Two nurses brought a roll of Glad-wrap. One unrolled the clear film, and the other held the edge end so that the filmy, clear plastic would not adhere to itself. If I were a casserole, they could not have done better. They wrapped the film around and around my arm and sealed the edges with tape. One gathered what looked like a mountain of towels, washcloths, a gown, robe, fresh socks, and lotions. Down the hall way by wheel chair we went, with the stack of linens on my lap. The other nurse stayed behind in my room to change the bed. Our destination was a tiled shower room at the end of the hall. Inside, the nurse assisted me off the chair into a seat under warm, running water. I washed my body and closed my eyes under the soothing stream. For a few moments I imagined I was under a waterfall, perfectly transported to bliss, until I felt the nurse washing down my legs with a soaped cloth.
Chemotherapy would leave me altered forever. My first shower in the hospital felt like ceremonious cleansing. Maybe the hugs of my children were washing off down the drain. The touch of my husband would vanish if I stayed in the shower longer. If I held any dirt from Washington Island it was departing from me also. I sat in the water and prepared to be changed. I did not know it yet, but this would be the shampooing of my hair. I kept looking at my plastic-wrapped left arm hoping it was dry beneath. The nurse helped me out and wrapped me in towels. I looked in the mirror at me in a towel turban and remembered baptism.
Steroids came next. The drugs brought a tsunami of heat and body jitters. Steroids are required to make chemotherapy more effective, but they robbed me of sleep for weeks and increased my appetite to sumo wrestler proportion.
A nurse arrived to quiz me: “What is your name and birth date,” she asked, as she leaned over my bed. Another held my arm band for inspection. They had come with my first course of chemo. When they were both convinced that I am Valerie Ann Fons, 2/14/51, the witnessing nurse left for other patients. The one left with me robed in a blue plastic gown, gloves, mask and eye shield. She injected toxic poison into my body and protected herself from splash. Pam from food service happened into my room at the moment of injection. When the chemo entered me, I prayed while Pam held my hand.
Belief in miracles of water into wine became more essential as induction therapy progressed. I was asked to swallow pills, accept pokes, and remain attached to drip bags of killing drugs without letting go of the hope that I might survive.
The night after my first chemo injection, I could not stare at the wall any longer. The ceiling of my hospital room seemed to press me flat. When the night nurse came, I asked if my bed could face the window. Without hesitation, she unlocked the wheels, shoved, and turned the platform with me in it toward the plate glass lookout. I was now pointed outside, where life is cars, trains, people, houses, sidewalks, street lights, sky, clouds, and birds streaking by the glass. I cannot see it all in the darkness of night, but I know that now my bed, body, and spirit are headed in the right direction to begin vigil.

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.


Returned to Seattle Cancer Care Alliance on Mother's Day, May 8th. Long term follow-up began at SCCA on Monday, May 9th. When I arrived I was angry. Why did I have to interupt my life? My responsibility for family and authority was threatened, felt literally stripped away as the hospital gown was placed in my hand. (who am I kidding? I was chopped liver before the plane landed at SeaTac) "It opens down the back," nurse said. Then, an amazing thing happened. Instead of submitting, I found my voice as the busyness of life with children, shepherding my husband, home making and schedule-keeping fell away. I'm naked again. Vulnerable and unafraid, noticing how far I've come. By invitation, I'm checking in and being checked. Bone marrow biopsy today. I sang my way through it. Knew enough to bring my own sheet music -- The Magnificat from Holden Evening Prayer by Marty Haugen from Luke 1L 46-55. In the bone marrow procedure room, the sterile drape was laid on my hip, the clinician's hands began to probe my back side for what she called "land marks." I could feel my soreness (after all this time) as she found and pressed at my bone marrow biopsy history scared upon my upper butt frame. That was enough for me. I zoned to another planet....."My soul proclaims your greatness, O God, and my spirit rejoices in you. You have looked with love on your servant here, and blessed me all my lief through....." I was laughing. Smiling and singing. Before I knew it, the procedure was over. "I can't believe it is finished," I exclaimed, as the clinician said "we're done." "Do you want me to show you the marrow we collected?" she offered. "No, no." I believe, I believe," I said. "I was told that jiggling or mishandling the sample can lead to a mis-read and scramble of chromozones. Don't show me." I didn't need it but asked for a warm blanket and continued prone, to glout with glee for a few moments. Spa treatment --cookies and juice included.

Friday, January 14, 2011

Fine Tooth

Today, for the first time in fourteen months, I combed my hair.