Valerie Fons

One Year Out

2011-08-18T03:47:00.000-07:00

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. www.breadandwaterlodging.wordpress.com

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.

Gospel According to Cancer, ChapterTwo

2011-05-10T17:00:00.000-07:00

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
Treatment,
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
Boats.
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.
Amen.
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

2011-05-10T16:48:00.000-07:00

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.

Re-Entry

2011-05-10T16:06:00.000-07:00

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.

Fine Tooth

2011-01-14T12:22:00.000-08:00

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

2010-12-15T08:03:00.000-08:00

Post traumatic

2010-11-28T23:45:00.000-08:00

There is plenty to do with cooking, cleaning, living, loving, and in the midst, when I least expect there is this tripping up that happens. Like a few nights ago when I walked upstairs. I'm still needing to lean heavy on the rail but I make it just fine and I'm about to enter my bedroom. It is dark and my door is closed and as I open the door, I get this instant swoosh of fear and dread of cancer death as if it were lurking and hiding there just on the other side.

Abundance

2010-11-28T23:40:00.001-08:00

Zion United Methodist Church, Fish Creek put two turkeys, sweet potatoes, pears, oranges and apples, stuffing mix, and two pumpkin pies in boxes with our name dropped the gift at the Washington Island Ferry at Northport. Marianne and her husband Mark are on the ferry coming on Island for the holiday. Eric from the ferry line knocks on their car window and says "you know Valerie don't you? Will you deliver these groceries?" Packed for their own purpose, M & M find room on laps, between them and the dog to deliver.

Aroma

2010-11-28T23:30:00.000-08:00

On Thanksgiving, 2010, I remembered 2009. Susan Reed wrote to me and said "what a difference a year makes." So true. Thanksgiving, 2009, medical staff were unable to rouse me and assumed I may have hemorrhaged in the brain. They tell me that I was rushed for emergency CT scan and other tests. Though I was out of conscious for nearly two days and missed the turkey, I came to and back to myself with a new note on my chart that this patient, (me), is allergic to Ativan, especially Ativan administered IV in methodical succession. This year, Thanksgiving, 2010, our family attended a community Thanksgiving dinner at Gibson's. It did not matter that we were going out. I put a turkey in the oven to cook just so I could smell it roasting throughout my gratefull day.

Sacrament

2010-11-28T23:21:00.000-08:00

"I can fix you one on a little plate all by itself and I won't touch it to hand to you," said pastor Frank at Trinity Lutheran Church. He knows I am immune suppressed and can't take communion from the common cup and loaf. So, I follow the crowd on Sunday mornings and when it gets near my turn, one of the communion stewards turns to the altar and brings forward my small silver plate with individual cup and wafer. The napkin is raised and it is mine, broken for me. The energy of joy overtakes me as I feast and jump for joy. After church one day, Joyce Morehouse eyes me and asks; "Why do you do that little jump after you are served?"

Writing

2010-11-28T23:12:00.000-08:00

I'm on chapter 3 of a book I'm writing about the cancer journey. My friend on Island said "No, don't put it on your blog. You want them to BUY it." But I'm not selling anything. I just need to write it. The children go to school. I light the candle, pour the tea, sit at the kitchen table with the lap top. After the jelly and milk have been wiped up from kids eating breakfast and running out the door to catch the bus, I picture myself in the hospital bed again and work to craft the story.

Tears in Produce

2010-11-28T23:09:00.000-08:00

So, I'm pushing a cart past produce at Sam's Club and I start crying. Just being alive.

The Paddle

2010-11-28T22:59:00.000-08:00

The paddle Chris gave me, the one that stayed with me in the hospital bed is beside my bed on Washington Island standing straight up. Joe is beside me and the yellow blade with the black stalk is waving at the ceiling.

Driving By

2010-11-28T22:45:00.000-08:00

I went to see Kathy LeClair this evening. That's a lie. I happened to be driving by Two Rivers and decided I had to stop. First time I've seen her since she left Seattle, August 4. I intentionally did not want to see her for these months. I wanted Seattle to just be gone, everything and everybody of Seattle to fall away while I got to life. But, tonight I stopped to see Kathy. She made popcorn. I washed my hands in her kitchen sink before eating and she wanted to get me a fresh towel to dry on. She told the kids that I get to scoop out of the bowl first since I'm still immune suppressed. My consummate care giver still at it. Shammond carried in a poinsetta. Korrina, Joshua and Steve were with me too. We stayed about ten minutes. I hugged and said thank you and "You look beautiful," which she did in a red cardigan sweater and her hair done up and her in her own kitchen and home instead of our two bedroom Seattle apartment. I would have gotten out of there just fine if she hadn't come out to the car after I'd already gotten in the driver's seat to leave. "I just have to have one more hug," she said, coming out across the lawn without her coat on. "I want you to stay warm," she said. When she hugged me through the open window of the driver's side, a flood gate of memories opened. She was with me in the exam room, she was rubbing my back, changing my dressing, making sure I got my medicine. I waved and honked. After a few minutes of driving in the dark, my cell phone rang. "You turned right instead of left," she noticed. "We made it out fine. Yeah, I got lost," I confessed, "But now we are on 42 headed north. We'll talk one of these days, without the kids." "I know," she said.

Bowl

2010-11-28T22:32:00.000-08:00

I took the kids bowling with the Stella Maris youth group to Sister Bay Lanes. I was there for the children, enjoying every minute of watching and minding them. I think it was my dad who got me off my feet -- the memory of my dad the bowler. He was 6 feet 6 inches with his own bowling ball. The last time I looked, his bowling shoes had been in the bag with the ball for so long that the shoes had shaped themselves to the ball and were curved wafers size 15+. So, I get up out of my seat for the memory of my dad, pick a pair of size 10 off the rack for me and ask Kayla if she would mind if I take her turn in the game. "Sure mom," she says and scoots out of the way. I pick up a heavy weight and lift it to my chin, take a few steps forward on my neuropothied feet and let go the ball to the gutter. I start crying because I can't do it. I'm off balance, the ball is too heavy, I can't run yet. But the tears don't stop me. I try it again and again and again until I'm dancing on the woodwork after bowling a strike and all the kids in the bowling alley are applauding. I take off my wool knit hat to show the fuzz and bow. Big grin shared with the crowd.

The Ones Doing Heavy Lifting

2010-11-15T13:38:00.000-08:00

Saturday, the one year anniversary of beginning chemotherapy, Marianne was in Lansing, Michigan, giving a presentation on behalf of our family, raising money in our honor through National Foundation of Transplant. Two weeks ago we were in Michigan closing our Dewey Lake house, members of the Sister Lakes Community Church came to help. People we didn't even know were lifting boxes from the basement and helping load the trailer. Claudia and Steve took us into their guest room. Friends are Washington Island kept our children in school and in their homes during our five days away. Sue took in Micala, Kayla and Korinna, Michelle and Tom took care of Steve, Marlene invited Shammond. Joshua rode with mom and dad in the middle and stayed close. When we left Michigan, someone put an envelop with $500.00 cash on the driver's seat. Mike and Lorraine, people we didn't know until move time, volunteered and gave four days of their life helping us move. Then, both of them drove a covered trailer with a load of our belongings to Washington Island and wouldn't even take expense money. Tim and Margo spent a day unloading the garage and storing Joe's tools in Tim's barn. Janice knew to take down Joe's bird house and stow it in the trailer. With all the stuff we were moving, Mike bestowed a hand made shaker box upon us when we left. We are overwhelmed with your generosity. Thank you.

Anniversary

2010-11-11T13:05:00.000-08:00

November 10, 2009, riding in ambulance to St. Vincent Hospital Green Bay
November 10, 2010, paddling kayak with Connie and Bonnie in Figenschau Bay, Washington Island

Recovery

2010-10-18T08:54:00.000-07:00

There are times when I want to stay in bed and pull the covers over my head. I don't.

What the Market Will Bear

2010-10-18T08:25:00.000-07:00

Have you heard that major decisions are to be postponed for at least a year following a death or crisis. Bone marrow transplant and cancer is crisis and plenty too close to death. We should have known better than accept an offer on the sale of our Dewey Lake, Michigan house. We have been on Washington Island five years and hadn't seemed to miss the belongings still stored there but going back this past week to clean out the house was an emotional and physical hit that Joe and I have not recovered from. We took all the kids and valiantly started sorting belongings. School papers from kindergarten, a collection of my early sermons, outgrown duplo blocks, pieces and parts for every project not yet finished. Dry wall for a ceiling in the basement, a shower stall for the bathroom upstairs. Memories. And loss. The work of Joe's hands is all over the one acre lot. The green house that he wants on Washington Island is in place at Dewey. The steps he built from the road to the lake, the children's play house. For all the good reasons we left, and all the good reasons we had to sign the purchase offer, we came up fragile in our attempt to go back and say goodbye. A forty-yard dumpster delivered in the drive began to fill with our efforts to close. Yards more of what we can't bear to part with and have no room for on Washington Island remain for the next trip needing to be made before mid-November. That which is "can't bear to part with" takes on new meaning through the lens of cancer but to jettison is tough. The net sheet from the real estate agent presents us with a receipt for what looks to us as near give away.

What Makes a Difference

2010-10-18T07:55:00.000-07:00

When I was kid and my birthday happened, mom would ask what kind of cake I wanted. "Cherry pie," was always my answer. Tart filling with feather-weight crust and sugar sprinkled on top. Candles fit fine even though the crust cracked and heaved like the new ice shelf on a winterized lake. When I grew up, I made cherry pies at Bread & Water. Ordered bucket after bucket of fresh frozen cherries. Dipped scoops of the red cherry fruit into a pan, thickened the juice with velvet cornstarch, added just a splash of organic, pure almond extract and filled each home made crust.
When I returned from Seattle Cancer Care Alliance, the restaurant had been closed for the year of my treatment. The empty and abandoned refrigerated pie case had been moved from the front door at Bread & Water to an out-of-the-way wall. A few weeks ago, when I shut down the large freezer, I found a full thirty pound pail of cherries. I have not taken time to sort through the paperwork nor receipts from the lodging and kayak tour business that continued in my absence. I don't know yet if we made money or lost. Yesterday, with sun shining through golden leaves, I made my way into grandma's pantry. The space was cluttered and not ready for pie making but that didn't stop me. Disorganized yet intent, I followed the steps of what has been missing for more than a year. I made three pies. Tart center, feather-weight crust with sugar sprinkled on top. Absolutely sacramental.

The Alternative

2010-10-03T14:07:00.000-07:00

I'm scouting bargains at Mann's Mercantile rummage sale one Saturday afternoon. "Nice to see you," says a neighbor face-to-face with me for the first time since my return. "It is nice to be seen," I reply. "We said lots of prayers," she reported. I nodded. "It couldn't have turned out any other way," she reckoned. "A mom with six kids can't just go off and die. What would they have done?" This time they did not have to find out.

Mind Over Matter

2010-10-01T13:22:00.001-07:00

When I paddled Baja Verlen told me that I didn't have to go to the bathroom, it was all in my mind. He claimed I didn't have to sleep, it was all in my mind. Mind over matter is huge. My counts are described as "less than robust." One of the doctor's say that I should have a bone marrow biopsy just to see what the marrow is doing. Is my leukemia back? Another doctor instructed me to quit the Bactrim for two weeks to see if the counts recover. It is not unusual for bactrim to reduce and suppress counts. "Aren't you tired?" Long term follow-up, Seattle Cancer Care Alliance asks. No. I am not tired. I hike and paddle, cook, clean, read, dream, organize, move furniture, throw garbage bags into the bin at the Island Exchange (dump), worship, sing, bake chocolate chip cookies, host slumber parties for kids, plan birthdays, entertain house guests chaperon school trips, drive go-kart and thrive with my family on Washington Island. Delighted to be alive, my good humor and high energy are over the top. If anyone experienced me as rambunctious before, I am now insufferable. Who is counting anyway?

After Shocks

2010-10-01T13:20:00.001-07:00

A few weeks ago I woke before dawn and felt as if all the sinister chemo poison of chemo was still operative sifting and wafting through my body. I dispelled the feeling by getting up and greeting the new day. The deacons at Second Baptism Church in Dowagiac start most prayers with "Thank you God. You got me up this morning...."

Angel Unaware

2010-10-01T13:12:00.001-07:00

Joe and I are shopping the Twice Around bargain night on Washington Island. I wander into the Christmas ornament room on the second floor and come face-to-face with a hand embroidered angel whose hands and face are lifted toward a green garland raining stars. The angel stitched on blue fabric background is framed for 25 cents. I start crying and look for Joe. He is on the ground floor scouting a mirror. I hold the angel. He sees my tears. "Do you think I could be alive for Christmas?" I ask. He hugs me so the angel is pressed between us. Through his tears, I hear him answer, "Yes."

Anniversary

2010-10-01T12:36:00.000-07:00

After death comes for a loved one, there are times when remembrance cuts quick without warning. For example, when I walked into Findlay's Holiday Inn on Island this morning for breakfast, the memory of my mother and dad sitting at a window table with the view greeted me with such intensity that I cried in my coffee. Unexpected memory collision happens with cancer too. A few weeks ago I was in the Good Will store in Green Bay with Shammond. He disappeared in the aisles, then reunited with me and my cart in housewears. He held a plastic packaged Halloween costume. While he lobbied the fine points of morphing into a clone for up-coming trick-rrr-treat and planned for activity thirty plus days ahead on the calendar, my mind and emotions were transported to Halloween a year ago. I didn't have the energy to buy or make costumes for the children. Kids pieced together what they could. Shammond chose pirate. I had just enough energy to lend him a belt to hang his dagger. I remember being tired as I drove the children from one house to another through sunset into dark. I quit canvassing the neighborhood early amid their protest. Nine days after Halloween I was diagnosed with Acute Lymphoblastic Leukemia and told that I would have lived only two more days if the doctor hadn't connected the dots, named my disease and ambulanced me to St. Vincent Hospital for treatment. Trick or treat will never be the same.

Doesn't Get Any Better

2010-10-01T11:55:00.000-07:00

8:10 a.m. "The bus is coming, bus coming," Kayla yells out. Six kids tussle to be first in line at the fence line opening to the road in front of our house. "Who forgot lunch?" I call. Joshua runs back into the kitchen to snatch his noontime eat's bag from the table and gives me one more hug on his way back out. I'm watching from the window, mindful what Micala said yesterday...."Mom, please don't come out in the yard with your robe on when the bus comes." Through the front glass I see sun streaming through colored leaves. Wind moving foliage, parting and making way for light bobbing from one open space to the next on its way to touch the ground. A remembered poem names fall hues as the dying but the picture out my window is a lively landscape of green, red, orange and yellow leaves. A chime of wild aster violet. Blue, blue sky. Indigo showing itself on pant legs and back packs to complete a rainbow. Kid's clothing filling in a crayon box of diversity. A quail family scampers from sight even though the front yard is a buffet line of bird seed there is too much action with kids moving through the front yard territory. One child skipping. One marching. One slowing to let others pass. Back packs stuffed. Bus bright with lights flashing. The institutional transport and destination greeted eagerly by the children taking their seats. I see the best of life out my window. Not because they are leaving for school. Relief and quiet has nothing to do with my joy. I am looking and seeing how far we have come.

Dressed and Practiced for the Scandinavian Fest 2009

2010-09-15T18:37:00.000-07:00

Before diagnosis, Kayla, Micala, mom and Korrina pictured in front of our Washington Island home, dressed and ready to dance in the Washington Island Scandinavian Fest. Hope to be in that number again -- 2011 here we come!

Jesus is On the Main Line, Tell Him What You Want...

2010-09-15T18:30:00.000-07:00

Kayla Queen Ervin praying for a horse in the National Cathedral, Washington DC when visiting in 2009 at the PT Boat Convention, memorial service for Lloyd Fons.

More Than Imagine

2010-09-15T18:12:00.000-07:00

Son Steven had "I Can Only Imagine" playing on the CD when I got home from paddling with Bonnie and Connie this afternoon. The lyrics are about imagining what it will be like to be with Jesus. It is a beautiful song. I closed my eyes and sang along with the words, standing in the living room with my hands raised with praise. Then, I stepped back from grooving with the message. Imagine has nothing to do with it. The joy I am living is now. "Steve, this guy has it wrong," I say. "I don't have to imagine. The kingdom is come on earth. The spirit of God is with us when a foster family made adoptive family can grow stronger through cancer rather than coming apart. When one of Joshua's home-made duck-tape swords becomes his gift (tied with red bow) to me for battling cancer. I watch Joshua outside the window. He is pushing his sword into the sky "Look mom -- I'm killing the cancer." The spirit of God was with me in God's creation this morning when paddling with friends. I'm in the mainstream. I don't have to imagine anymore. I am choosing to be in God's kingdom today.

Writing

2010-09-15T18:07:00.000-07:00

Joe and I are walking miracles. God brought us home for a purpose. I had a dream a few weeks ago that I saw my mother and ran toward her for a hug. She is coming to visit Washington Island with my sister Leesa and Leesa's husband Paul on September 20. Dream coming true. I had another dream about opening a door that I had never seen before and finding on the other side of the door a space to write, a close and safe space with a window. Today, Connie Hatch offered me the use of her waterfront home whenever I want to write. Will I open this door?

Leaning on Everlasting Arms

2010-09-15T17:46:00.000-07:00

Another lumbar puncture. One more bath for the old brain in chemo. Why? Because leukemia tends to hide in the spinal fluid. Six lumbar punctures with chemo injection are recommended post transplant. I completed four before being discharged from Seattle Cancer Care Alliance. Another spinal draw for testing and 5cc of golden-colored Methatrexate into the spinal fluid just in case. I canceled my appointment last week when I woke to a gale and heard the ferries had quit running for the day. Thank goodness for high winds. But, yesterday, there was no putting it off. My appointment was at 11:45 a.m. in Sturgeon Bay with Dr. Jaslowski. I did not want to do. Did not want to go. Monday, the night before my appointment, I asked our kids and Joe to come together for a family meeting. I explained what I was up against and how I had plenty of lumbar punctures before and figured I could get through another one but I was scared and didn't want to go. While I spoke with our family, all of them looking at me and listening, I cried, talking about how I didn't want to go back and feel like a patient and go through another procedure. I got a cushion off the rocker, put it on the floor and knelt, asking them to gather around me and pray. Before I was settled on my knees, a crush of willing kids and husband had surrounded me. Shammond hugged. "Mom, I believe in you," he said. Micala whispered in my ear; "Mom, I'm sorry I yelled at you last night." Korrina gave my fuzz head loving pats. Joshua kissed my cheek. Kayla said "You can do it mom." Joseph whispered, "I'm so proud of you." Steve didn't say much but I noticed that his phone rang and he didn't answer it. When I got up from my knees my tears were gone and I knew I could do this thing. Their prayers and love prepared my way and set my heart.

Dust Settles

2010-09-15T17:38:00.000-07:00

Three weeks to the day of getting home from Seattle, I sat in the kitchen at the table and strangely enough kept sitting for a while instead of jumping up to what was next on my list. There was blissfully nothing on my schedule that day except perhaps the most important item -- processing a bite more of what has happened. Let the dust settle, take a breath from reclaiming a household, reuniting with family and friends, starting school for the children, being home. I got still enough to cry. And, in the crying, I sensed the multitude of prayers, the crowds of people who got me this far.

Four to Four

2010-09-13T17:46:00.000-07:00

A blustery, grey, cold day. Steven's first high school soccer game off Island. "Is anyone going I can ride with?" I asked the school receptionist by phone. Ann Rose, the soccer coach had one space open in the school van. I missed every summer game because I was in Seattle for the bone marrow transplant. Now, I get to ride in the front, passenger seat. A gale blowing over Death's Door. Lake Michigan spray pounding the cars on deck on the way over. When we got to the game, I was the only parent in the bleachers at Bailey's Harbor. The prayer quilt from the Sunbonnet Sues, the one that hung over the doorway in my 7th floor west room at University of Washington Hospital during bone marrow transplant, the one that became a head board in my apartment at the Pete Gross House, the prayer quilt that sheltered my body when I needed a friend, became a colorful lap robe. I loved being along for the ride. That's my son out there on the field in the blue shorts, white shirt and socks. All the uniforms on the Washington Island team look alike but I know which one is mine.

Spagetti Man

2010-09-13T12:22:00.000-07:00

Shammond Martin Ervin at Bread & Water

Portage

2010-09-05T18:35:00.000-07:00

No one wanted to help. Except Kayla. She walked through grandma and grandpa's woods with me and held my hand. We found the L.L. Bean hammock frame where we had left it more than a year ago before cancer. A year ago, Kayla and I had camped the ridge overlooking Green Bay. Just the two of us and our dog Katie. While we snuggled on camp rest mattresses inside our sleeping bags, Katie was tied to the hammock frame. She chewed the cotton webbing to shreds from the groundside up. This year, post transplant, walked to the ridge together. Katie is on a farm in Bailey's Harbor herding sheep. We found the hammock disassembled in five pieces. It had been taken down by a visiting family member from off island who figured leaving a hammock neglected on the west shore courted liability. The Island visitor dispersed the rocks of our fire pit also. Perhaps it was better that the other children weren't with Kayla and me to see the place of memorable family gatherings disseminated. We bowed to the earth, each of us reaching for a heavy metal pole. We had come to reclaim the hammock frame. I directed Kayla to the lighter cross-bar members but even with the smaller pieces, she would tote more than 10 pounds. We carried the poles over leaves, downed branches and roots toward the road. After five minutes of forward march, I propped my pipe against a tree, accepted her piece and rested it against a stump. I took her hand and headed back for the pieces we had left behind. "When I walked the Methye Portage I took the canoe on my shoulders as far as I could carry and set it down," I explained. "Rested on my way back for the next load. Picked up a pack and carried it forward and past the canoe until I couldn't carry it any more and set the pack on the ground and rested on the walk back for the next batch." "What's the Methye?" asked Kayla. "A 13-mile carry between the Mackenzie River watershed and the Churchill River, over the height of land," I said. "I played leap frog with my pack and canoe," I explained, trying to give Kayla an image that would explain my plan. "I played leap frog with Korrina once," Kayla reported. "I couldn't jump over her," Kayla laughed. We made the turn around, rested on the return walk and picked up another load. Sometimes she carried a hammock pole to the next resting point, sometimes she didn't carry any piece of the appliance and just walked with me holding hands so that I didn't fall. When she didn't have hold of my hand, I used a hammock pole like an unweildy cane. A bone marrow transplant patient and a seven-year-old trudging in the forest understory, companions weighted with metal pipes. "Now we have to set the pipes against the tree, far enough into the air so that we don't miss it in the underbrush. If we put the pipe on the ground and then start back for it, we may not see it or walk off our trail, " I said. "And, we have to put the pipes on the far side of the tree so we can see where we rested it as we walk back. If we put the pipe on the side of the tree from where we came from, we may not see it as we come back looking." She didn't need all the instructions and reasons why. Kayla was content holding hands and helping me more than she knew. Forward and back, forward and back for more than half an hour before we reached the road with all pieces of the hammock accounted for. We retrieved our car. I drove us home to assemble the hammock in the front yard under the big tree where grandpa Lloyd used to rest with great uncle Del looking up at the leaves. Kayla and I steadied and balanced the hammock to lay down together. We took in the view -- straight up.

Invitation

2010-09-05T18:33:00.000-07:00

If I put a sign outside Bread & Water signaling morning prayer do you think anyone would come? Would I show up?

Three Graces

2010-09-04T14:04:00.000-07:00

Profound aloneness in the midst of abundant, fast-paced life. Sit with me and breathe. Time to listen to the other and look. Take a look see at what God is doing.

Stun Mode

2010-08-23T15:19:00.000-07:00

Met at Northport into the arms of Marianne, Mark, Charlie, Alison, Billy, Stacie, Kathy. Flying transition to bed rock. Come to life turned topsy. A a year-long cart wheel on the high beam. Nailed, two-feet, solid, dismount into another planet. The full crew, mom, dad and six kids. Home. Bread & Water found alive. Billy had taken down the weathered cedar strip and replaced it with a kayak over Bread & Water's front door. Marianne and Mark filled the refrigerator with food. Kathy, Billy's mom fed us spaghetti and meat balls when we got off the ferry. Don Heeringa, Bonnie and so many others had cleaned the house that we slept in our own beds and didn't use the tents that Billy had set in the back yard in case we needed them. Alison and Charlie brought cooked food on Friday and tonight. I haven't unpacked yet. Sunday afternoon, I sat at School House Beach while the kids swam in Lake Michigan. I'm in stun mode. Pinch me.

Cloud by Day and Fire By Night

2010-08-17T18:56:00.000-07:00

While I'm sitting stunned in my room, still in bath robe past noon, Kathy Garner arrives with Mariann Karpoff, Molly Shaw and Kirsten Yelin from University Temple United Methodist Church. Armed with rubber gloves, cleaning solutions and rags they begin cleaning the apartment. Don Heeringa, a United Methodist Church volunteer in mission has organized a team of volunteers to clean our Washington Island home. An expert of mold eradication called for permission to assist. Bonnie Burnham rented a steam cleaner and attacked my car with a mold-killing bomb, rolled up the windows and shut the doors quick so that total destruction of mold could happen in an enclosed space. Billy Welache photographed the house and e-mailed pixs so that those coming knew what they were getting into. Billy's mom is coming to help. Donna and Lundberg and her husband cleaned out maggots and flies and started the wash down. Neighbors, volunteers and many others I haven't even met yet are preparing for our return. The Islander who said "I don't want that woman and her black kids coming back here," has no sway. The Port Authority of the Seattle/Tacoma Airport and United Airlines are seeing to it.

The Two Who Carried Us

2010-08-17T18:46:00.000-07:00

"If you don't go home this weekend, let us know," said Megan. "We'll see you on Monday night again." Megan followed up her invitation with an e-mail message of her promise. We aren't flying out until Wednesday, August 18, so I called Megan. She was delighted to here that we could see one another again. Megan and her mom Debbie are self-described "experts in fun," our Side-By-Side, University Presbyterian Church volunteers who have been picking up Micala, Korrina and Kayla every week on Monday evening since May. When the boys arrived in Seattle, Megan drove her car, Debbie drove her car and there was room enough for me to go too. They met us this past week on Monday evening. They added a special Thursdy evening fun for Micala, a special "just the girls" birthday dinner and manicure for Micala's birthday! Whenever they came to pick us up, they bring pictures from the previous Monday adventure. "Experts in fun" is a good sound bite. Marketable. But, when I think of Megan and Debbie, I know them as experts in love. Do you get the picture? Kayla is walking next to Megan. Kayla reaches out and takes Megan's hand. Shammond sitts in the back seat of Debbie's car and won't get out when it is time to say goodbye. "I'm staying here," he says matter of fact. Micala throws her arms around Megan and won't let go. Korrina cries. "When you come back to Seattle for your one-year follow-up, let us know," says Debbie. She means it.

Sweet 100+ Days and Not Been Kissed

2010-08-17T18:35:00.000-07:00

When Pat, my tan team nurse introduced herself on April 14, she said "lots of people call me mom." I call her mom too. On April 27, the day before I was admitted to the University of Washington Hospital for transplant, Pat changed the dressing on my central line. She put a gel pack of antibiotics under the dressing. I felt like she was packing me a body lunch and sending me off to camp.
Preparing to return home, I e-mailed Pat this morning. "I know you have already pushed me out of the nest but I have one more question, when can I kiss Joe?" Her reply: "The minute you see him! You share what we call "family germs." Kissing and any other activity of adult choice (within reason, your platelets are low and won't tolerate too vigorous an activity). Check the manual under "sexuality." And the kids too are fine to kiss, unless they've been kissing frogs or something like that. Take care little chick, you are more than ready to be home and take care of what life will hand you. Just remember to take care of yourself too. Pat."

Like a Baby Coming Ready or Not

2010-08-17T16:43:00.000-07:00

In Keep It Moving, my book about Baja by Canoe, I noticed that Christmas comes like a baby being born, ready or not. Leaving Seattle is like a baby coming ready or not. I'm not done packing. I sit and stare at a three foot high stack of lab results, procedure guidelines, copies of releases I've signed, my transplant notebook, brochures about transplant, magazines about cancer, transplant notes and schedules. I try to weed it out but I can't throw it all away. I'm just getting to know me as transplant. It is all too close to discard. I know where Shipping and Receiving is on the SCCA first floor. Shipping and Receiving has boxes. The clinic became my home. The chapel on the first floor is haven. The Patient and Family Resource Center is office. The laboratory where my blood is drawn is the window on my body's world. The 6th floor is where the bone marrow clinic is. I know where the charge nurse sits and how to find Doris in social work. Mr. Jones has my file at the front desk when my mail comes in from scheduling. I know where Anitra sits behind her computer if I have a question about my agenda. The tooth fairy who is really Michelle has the dental office down the hall. Rodney in the Bristo not only cooks and serves the food but defines it as mid day restoration. Rebecca in bone marrow aspiration is so good at what she does that I could go in there right now to have another bone marrow aspiration if that was the only way to see her again and say goodbye. I know when her son Eli's birthday is. I know where to find expert Dr. Petty if I need to hear a new joke. Jennifer the chaplain got to know me. She always waited for my invitation but knew that I wouldn't let her quit an appointment without me asking her to put her hands on my bare head and pray. Becky is the volunteer who drove Shammond, Joshua and me from the airport to the Pete Gross House when we flew in from Detroit just this side of midnight on July 4th. Becky is a volunteer in the gift shop too. She calls out to ask how I am whenever she sees me walk by. I notice the man who walks around silently with rubber gloves, cleaning solution and cloth to sanitize surfaces for all of us. All of us patients, those in wheel chairs, some with masks, canes, care givers, bald with central lines. I miss you already.

Ready or Not

2010-08-17T16:14:00.001-07:00

"You must be really excited about going home," people say. I think so. There are times when tears come to my eyes and I look forward but sometimes, I sit still, almost immobilized with mixed feelings. Katie in Patient and Family Resources understood completely. "Well, you spent a lot of time and energy here. You waged a war here," she paused. "You're right," I agreed. "And you had a lot of battalion," She laughed and I laughed too thinking about my kids, all of whom she had met. "And, I hope that includes all of us too," she added. The battalion includes so many. I was cared for in this place. My experience of bone marrow transplant is life giving and life changing.

Flowers That Came Anyway

2010-08-15T15:46:00.000-07:00

Dear Claudia and Steven Zebell. I know Claudia knew that flowers are not allowed at the Pete Gross House. She and Steven sent flowers anyway. Monica, the house manager called one day. "There is a box of flowers here for you but they can't come in." It was enough Claudia. I didn't even have to open the cardboard. Even though they wouldn't let me hold the cardboard. I stood looking at the cardboard and it was enough that you sent the box. I am blessed and joyed knowing your gift. I received your gift from afar, like being at the zoo looking through bars but your gift's strength and beauty was not muted.
Monica said "I'll take care of them." I asked her to please set the flowers outside. When I came home from the clinic that day she had unpacked the flowers and put the base on the only outside table at the Pete Gross House --a table in the smoking area behind a waist-high fence. My flowers couldn't be in a smoking area. I sat for a long time on the bench by the front door wondering where else the flowers could go so that no one would trip, no one would bother and everyone could see. The ledge? No, the vase could fall and smash. By the newspaper machine was no good. The one delivering the papers might not see the vase sitting on the ground, could kick it by mistake. The flowers might spill. The vase couldn't sit on top of the paper rack. The rack was jiggly. I kept exploring and reasoning the entry options. Then I saw it. By the front arch, a concrete corner makes a perfect two-sided triangle of protection. I transferred the vase from the smoking area table to the concrete entry corner, careful to hold at the base and not touch leaves or petals. It wasn't enough. I went upstairs and got our side walk chalk. Bone marrow transplant patient becomes graffiti artist by drawing a heart, printing "gift of love from Michigan," and writing Claudia and Steven Zebell on the wall. Every day I enjoyed the salmon, pink and yellow roses. I watched people admiring the flowers. I watered the flowers. After about ten days, the roses were spent. A volunteer accepted the vase and said she would compost the rest. My chalk writing and drawing on the concrete wall is still there. Before I leave, I'll take a wet sponge and clear the site enough. I still smell the roses.

For Pete's Sake

2010-08-15T15:09:00.000-07:00

Our apartment houses seven people, wild to get home -- packing, messing, continuing day-to-day life and taking breaks to play. This afternoon four went swimming at Green Lake. I am taking breaks to be quiet, say goodbye and get to know my body without a double lumen line with blue claves hanging out of my chest above the right breast.
Since April, I've been getting off the elevator on the 6th floor and coming face to face with a photograph of two sailboats near colliding with the bold word "Persistence" printed at the bottom. I did not learn persistence by staring at the word but by living it. I had a similar experience when I paddled to Cape Horn. "Love One Another" was written on the bow of my canoe. I didn't learn to love one another by reading the words for 16 million paddle strokes. I learned to love one another because love was demonstrated to me in 23 countries over 33 months.
What words to live by greet residents on other floors? With paper and pencil, I pushed the button for all floors in the elevator to find out. Those living on floor five see "communication. Floor four neighbors come face-to-face with "integrity." "Challenge" welcomes residents on three. "Working together" affirms those disembarking the elevator on floor 2. Whatever the decor and code words of encouragement, I have learned from living with neighbors -- six floors of bone marrow transplant patients, care givers, family and friends. How did any of us have the energy and grace to hold open the door for the other, say "you go first" or smile and wait in the elevator while our six kids straggled in. I thank God that by the time we moved to the Pete Gross House pushing bottons in the elevator was no longer a novelty to fight for. As a bone marrow patient, I know that by the time I get to the elevator, I need floor six so that I can get in room 603, find my bed and lay my body down.

God's Perfect Timing

2010-08-15T07:43:00.000-07:00

"Trust me," said Cathy from the Port Authority Seattle/Tacoma Airport. I did. Lora from United called on Saturday morning. She had untangled the snarl and spun our two Delta tickets, two lapsed tickets, one United ticket and two Mercy Airlift tickets into gold. Our mis-match deck are now seven tickets on one flight, one airline, together. Lora paid for an airport shuttle to pick us all up. All luggage in one vehicle, all luggage flying free. We launch from Seattle on Wednesday, August 18 at 11:23 a.m. into Chicago. From Chicago we depart at 9:15 p.m. and land in Green Bay at 10:05. Settle Inn, Green Bay bunks us for Wednesday night. Thursday morning we catch a ride on four-wheels. I am looking into Door Tram vouchers and the Green Bay Shuttle, or renting a van to get us to the Northport Pier. On Thursday, August 19, Joe's daughter and son-in-law will put him on the Lake Michigan Car Ferry from Ludington, Michigan to Manitowoc, Wisconsin. He docks in Wisconsin at noon. We won't go home without him.

Rock Wall

2010-08-14T08:25:00.000-07:00

"When my line is pulled, I have a goal of climbing the Rock Wall at REI before getting on the plane," I said to my doctors. "Oh no," was the reply. Their reasons were that the rock wall is dirty and the hand holds are filthy and my body would be smeared against the sweat of others and just no. Now that my line is pulled, I wouldn't try the rock wall anyway. I'm not supposed to lift anything much for 48 hours. Pulling my body up a rung, even in harness would be strenuous. Last night, the kids climbed the two story rock wall at REI. Shammond, Steven, Joshua, Korrina, Kayla and Micala. I watched each one of them reach the top. Mom's the bald head with camera.

Quiet

2010-08-14T08:18:00.001-07:00

Sunrise over Seattle. Space Needle view from our window. All the kids still asleep. Refrigerator looking empty, canned goods sparse. United Airlines representative called last night and said "I'm working on it." She suggested tickets on a red-eye flight from Seattle to Green Bay. As much as I want to get home, the thought of six kids flying through midnight, changing planes in wee hours and travel recovery for an immune suppressed me made me ask the representative to seek another option. Suitcases are on the floor of the apartment. Dresser drawers hanging out. Papers sorted, tossed or saved. We are smack, dab in the middle of transition. Until we hear from United, we'll continue with our plans. Sail boat ride from 10 - noon this morning on Lake Union. Harley and Kathy picking us up for a tour of the Pacific Science Center in the afternoon. Sunshine in Seattle. Lift off a'coming.

2010-08-13T21:14:00.000-07:00

Before my diagnosis of Acute Lymphoblastic Leukemia, 10 year-old Shammond was the one who consistently climbed into bed next to me with a bag full of books. He would stack the books on the bed, pull the covers back and nestle in for a read. When I spent four months in a Green Bay Hospital, Joe kept the children in school on Washington Island. They came to visit on some weekends. Shammond was always the first kid to reach my room. When the car docked in the parking lot, Shammond must have run all the way because he would show-up at my bedside smiling and we had time for a good talk before the rest of the family arrived. Maybe he ran the stairs.
By the time I got home in February, Shammond was living his own life, telling mom and dad that he didn't need any help and he knew how to do it (everything). I had a bed in the living room for months. Shammond would walk by without stopping. He was coping with fear uncertainty and circumstance as best he could. One day I found him sitting on the floor crying in the pantry. I sat on the floor with him, started "This Little Piggy," and played with his toes. "These toes are thirsty," I noticed. "Will you let me put some cream on them?" He nodded o.k. Later in the day he came to my bedside and climbed in with a book. When I left in mid-April for the bone marrow transplant at Seattle Cancer Care Alliance, Shammond stayed with his brothers Joshua, Steven and dad on Washington Island. "So, how is Shammond," I would ask when talking with Joe via cell. "You can't tell him anything. He thinks that he knows it." And, this is the boy, one who made his own painful journey through cancer with mom who gave up tie-dye shirts and wading pool fun at Hutch Day Camp to sit by my side for the central line pull. I never asked anyone to accompany me. It was all his idea.

Divine Care Provider

2010-08-13T10:38:00.000-07:00

At 9:20 a.m. Shammond calls me on my cell phone. I've been at the clinic since 7:30 a.m. blood draw, 8:00 physical therapy headed toward a 9:30 a.m. central line pull. "Mom, I'm coming to be with you," Shammond says. "I'm on the shuttle now." "I'll wait for you at the front door," I reply. When he shows up I put my arms around him. "Thank you so much, this means so much to me," I explain. "Day 100 and my last clinical procedure and you are here to witness and be my care provider."
We check in on the 2nd floor. I get a wrist band. Shammond gets a wrist band too with "care provider" printed on his. We are escorted into a procedure room. "Now, you don't have to watch," I caution. The nurse is cautious too. "How are you with medical stuff," she asks. "O.k.," says Shammond but I know he doesn't know what he is getting himself into.
Dr. Petty is the ace who put the Hickman into my heart and juggler vein. When Petty arrives in the room, he shakes Shammond's hand and pretends that he is stuck palm to palm with my kid, then he finishes off the good fun with two high fives. I'm already on the table with a warm blanket and the nurse telling me what to expect.
I start singing a song about my boy being strong as the eagle. Strong as the bear. Then I realize that animals have nothing to do with this. Shammond is standing next to me because he is created in the image of the divine with compassion and love of God.
Shammond gets a chair for caution sake. The nurse knew to bring the chair. Even I have heard about the adult care giving observers who pass out when a central line is removed. Petty invites Shammond to sit closer and get a good look. I remember dissecting the fetal pig in high school. It was the kids watching who threw up. The students with scalpels were too busy and curious to be grossed out.
A firm tugging and the line doesn't budge. "I'm going to numb this area," Petty explains. He produces a large needle, just long enough so that our eyes get wide, then shows us the pediatric needle that will in fact be used. His manner is more expert surgeon providing instruction than tease. Shammond watched the cutting of a very small portion of my skin that had formed around the line cuff that needed to come out before the line could be set free. Then the line pulled out with one wonderful swoosh. Pressure on the site for 10 minutes. Only then did I realize that I was squeezing Shammond's hand so hard, I think it might have crushed. Shammond cool as a cuke through it all.

Outside the Box

2010-08-11T14:11:00.001-07:00

A person at the Port Authority Seattle/Tacoma Airport is working with a letter from the Seattle Cancer Care Alliance signed by my doctor and seven (two lapsed tickets, two Delta tickets, two Mercy Medical Airlift tickets, one United ticket) confirmation numbers to coordinate our return flight to Green Bay. I haven't met the woman yet but have spoken to her by phone. She seems to have caught our vision for getting home and said she would try to help.

Lucky Days

2010-08-11T14:08:00.000-07:00

Induction chemotherapy treatment for my Acute Lymphoblastic Leukemia began on Friday, November 13, 2009. Nine months later, I reach 100 days post transplant and am released from Seattle Cancer Care Alliance on Friday, August 13, 2010. Superstition has nothing to do with it.

Directing Traffic

2010-08-11T07:13:00.000-07:00

With transfusion, my platelets came up near 60,000. Made me a candidate for lumbar puncture. Oh boy! So, I'm laying on my side facing the wall and the drape is in place on my spine and the one with the needle is fishing between the vertebra to find the draw. "Did you find it yet?" I ask. "No, not yet." I wait a while and make an executive decision. "Pull it out. Get somebody else." I hear a voice in the room from a person I've not seen face-to-face repeating my words "pull it out." And, I hear the people changing places and rubber gloves being pulled on and finally a person sits down who starts feeling the mountain bumps of my spine and repositioning my knees to the chest body tuck and after a few moments of thumb pressure exploration the needle pops in and finds the spot no problem. We have the drip. Wait, wait for the test tubes to fill. Pop the chemo tube on the needle site and begin the slow injection. Me facing the wall, directing traffic. With this episode, I believe I graduated to professional patient. Plain and simple. Advocate supreme. This has absolutely nothing to do with being a control freak and everyone to do with managing care. One small victory in a huge and continuing challenge.

Mentors

2010-08-10T18:15:00.000-07:00

Where will I walk on Washington Island when the snow flies? Last night when the question came to mind, I was too tired and too alone to figure it out. The challenge loomed large and at that moment insurmountable. Yes, Valerie Fons said insurmountable. 8:00 a.m. appointment with physical therapy and I get to talk with Sue. Verbalize next steps. We talk about walking in winter. I remember and visualize the recreation center on Island, the Washington Island School, gym in the community center. Cross country skiing. With God nothing is impossible. Snow fly don't bother me.

Snow Fly

2010-08-10T04:37:00.001-07:00

The Seattle Cancer Care Alliance building was closing at 10:00 p.m. when I got out of transfusion and waited for my cab on the inside of the glass doors. The lights inside the building where I stood made it difficult to see out but for a moment, the image I got from the street lights and concrete was a vision of snow on the outside. Fear and recognition swept over me. I'm a transplant patient and I'm headed for a Washington Island winter. Where will I walk on an island surrounded by ice, encased and blown in snow.

Ervin kid turns 16

2010-08-10T04:16:00.000-07:00

Steve's birthday is August 8. Takes two taxis to cart six kids and me to Elliott Bay, pier 66 to tour the USS KIDD 509.5 foot Flight IIA Guided Missile Destroyer. Mom climbs ladders up and down with all hands helping. Lunch at Ivars. Hike the Pike Place Market. Bus adventure with transfers into underground the tunnel getting home. Happy birthday to you, Happy birthday to you. I saw you blush in the crowded restaurant when we sang the birthday song. You looked at our faces and blew the candle. Dear One.

Perspective

2010-08-10T04:03:00.000-07:00

Dr. Shustov, the Acute Lymphoblastic Leukemia specialist at Seattle Cancer Care Alliance tells me that Dr. Jaslowski, my Green Bay oncologist did a phenomenal job. First off, my oncologist did not kill me with the Larson protocol. One out of seven don't make it through induction. Second, Dr. Jaslowski knew enough to tell me that getting a bone marrow transplant was the only way through this disease. Without a bone marrow transplant, only 20% survive without remission of the disease. The bone marrow transplant gives me a 50% chance of survival from ALL. One in eight patients are dead at 100 days following transplant. Shustov calls ALL a rare and lethal disease for adults. I had worried that Dr. Jaslowski was not an ALL specialist. Shustov is named a specialist. Even Shustov sees only six of less cases of ALL a year in a five state radius of practice. "There are only four drugs to treat ALL," he explained. While the Larson protocol is ancient, your oncologist did a phenomenal job. Treating ALL is an art. It is all about mixing and intensity of the drug....using enough without killing the patient. In six months, have your heart function tested. The Danunorubicin you had through the Larson protocol is toxic to the heart and your Prednisone doses through induction were massive."

Following Compline

2010-08-10T03:57:00.000-07:00

St. Mark's Cathedral has a D.A. Flentrop organ built in Holland in 1965. The organ boasts58 stops, 79 ranks and 3,944 pipes. The larger pipes look like industrial smoke stacks. The resonance is deep. In contrast, the kid's music system in the car next to me at the stop light with the boom, boom base vibrations coming forth from the back seat and all the windows rolled down sound like a plastic toy whistle on mute.

Broke the Record

2010-08-10T03:51:00.000-07:00

Tonight I broke my record. Since getting out of the hospital in early June, I had not needed transfusion. Tonight, I was called into the clinic for transfusion. Laboratory results this morning reported my platelets had dipped to 39,000. In itself, the 39,000 number is not a signal for transfusion but a lumbar puncture and central line pull are scheduled for Tuesday and the platelets were too low for these procedures. I wanted to wait on my body. The platelets will come up but we've already tried that tack more than once and post-poned procedures. This time, I took the platelets. With a higher platelet count, my options increase. I can be ready for anything.

Compline

2010-08-10T03:40:00.000-07:00

Sunday nights at 9:30 p.m., Kathy Garner takes me to Compline prayer at Saint Mark's Cathedral on Tenth Avenue East, Seattle. The place is usually full. People bring blankets and lay on the floor, sit on steps, crowd the pews. Compline is a harmony of sung prayer and scripture. The sound is simply blessed healing. Words that impress and envelope me are "the Lord will hide me," "beneath God's wings," "talking about the wondrous works of God." I sit on the floor, as close to the semi-circle of robed male singers as I can get. Close enough to hear the pitch pipe hum. Close enough to see the gold hoop earrings in both of the choir master's ears. Close enough to know that I need to close my eyes to shut out the vision of present reality and hear the voice of eternity.

From Kayla

2010-08-10T03:36:00.000-07:00

"Dear Mom. I hope westick togetherer I now we have been stuggling. from Kayla to mommy." Kayla message was printed in crayon on a card with tree, stripe of blue sky, a heart shaped butterfly, flowers, two ants, red sun and berry bush. Kayla folded the card and wrote on the back; "From Kayla to Mom ps I love you." Smiley face with nose and hair grinned at me.

Sunbonnet Sues In Canoes

2010-08-10T03:22:00.001-07:00

After returning from Cape Horn, I took all the fabric I had collected throughout the western hemisphere and made a presentation at the Capitol City Quilt Guild in Lansing, Michigan about my adventure. By the conclusion of my presentation, women volunteered to work with me using the fabrics and making quilts to tell the story of the Two Continent Canoe Expedition. Barb, Enola, Gail, Mary, Jan, Irene, Eda, Jane, Daisey, Jean, Pepper, Carol, and others worked weekly for years making three quilts to tell the story of paddling 21,000 miles. When the three quilts were finished, the women continued meeting and quilting together. When I married Joe they attended our wedding and made a wedding quilt for us. When I got cancer, they worked with Lisa and Andrea to make and send a prayer quilt. On the back of the quilt is a patch with these words; "This quilt was made for Valerie who brought us together and showed us the value of dreaming dreams and having the courage to make them come true. Every seam was stitched with strength, every knot was tied with prayers, and every edge was bound with hugs and love. OXOXOXOXOXOXOXOXOXOXOX....."
The quilt hung on the door of my room at the University of Washington Hospital. At the Pete Gross House, the quilt padded the head board of my single bed. In the dark of the night this past week, I was over come by sadness. I pulled the quilt over me and drew it close.

You Can't Get There From Here

2010-08-07T23:47:00.000-07:00

When I paddled from the Arctic Ocean to Cape Horn, I never thought about how I would get home. Every moment was spent reaching toward the goal of Cape Horn. When I got there it was time enough to start the homeward trek. It took a couple of months to make it back. From the southern tip of South America, my partner Verlen and I paddled part way, received a ride from the Chilean Navy, rode a bus then plane as far as Buenos Aires. We stayed stuck in the capitol, until J.P. McCarthy at WJR radio station in Detroit made connection with Uniglobe Travel who booked passage for us on Pan Am from Argentina to New York. The LaGuardia Port Authority gave us a patch that read "Verlen and Valerie survived a night at LaGuardia," for the 24+ hour stint Verlen and I spent camped at the airport with two 17-foot canoes, 19 boxes of equipment and a puppy. Eventually, we flew into Detroit and home.
Bone marrow transplant return with six minor children is challenging too. All tickets were booked on medical emergency fares with policies that apply, Micala and I have tickets home with Mercy Medical Airlift. Korrina and Kayla have return tickets on United that have lapsed since the date set for their return came and went when I was in the hospital. Steven has a ticket on United. Joshua and Shammond have tickets returning to Detroit on Delta since they both flew into Seattle with me from Michigan following my emergency medical trip to visit Joe in the hospital. I have spent more than eight hours on the telephone with agents who put me on hold and hold again as they consult with supervisors. Todate, transport is not booked. At least the music played when I hear "I'm sorry for the inconvenience, Ms. Fons, but I need to put you on hold," is a cut from "Rhapsody in Blue."

Parting Shot

2010-08-07T23:32:00.001-07:00

Next week the tan team will meet with me once more. A lumbar puncture is scheduled with a shot of methotrexate if my platelets are high enough. My platelets have been dipping near 40. I'm a bleed waiting to happen. My central line is pulled next week. Dr. Petty, here I come. I've been patient and abided the rule -- no kayaking until the line is out and hole to my heart clots over. Then, they tell me, I'm free to go. This past week I've been learning more about living post transplant. Did I know that skin cancer is one of the most common secondary cancers for a transplantee? I do now. Water sports beware. Sunscreen is my friend. Tooth decay is anticipated so I'm advised to brush with prescription fluoride toothpaste once a day. Don't swallow. Don't rinse. Wait half an hour before eating or drinking. Every day! Chronic GVHD can happen. I've been given a list of signs to watch for. A muscle in the vagina can close shut -- self-exam once a week to detect early. The throat can close down, watch for gradual weight loss or trouble swallowing. Living with the cure comes with a care manual, long term follow-up and a phone number for when, if and questions.

Another Chance

2010-08-06T22:41:00.000-07:00

Thirty years ago, I launched into Green Lake with the Seattle Canoe Club. From that beginning I paddled the canoe leg of Bellingham Ski to Sea, circumnavigated Baja, raced the 2,348-mile length of the Mississippi, expeditioned 21,000 miles from the Arctic Ocean to Cape Horn and miles between adventures. Tonight, I returned to Green Lake and launched a more significant journey. Kathy Garner invited and drove me to "From Hiroshima to Hope." The evening program included Silent Space for Reflection, Buddhist Peace Fellowship, Maryam Borghey, National Iranian-American Council, American Indian Storytelling, Seattle Kokon Taiko, Commission for Multicultural Ministries, Japanese Dance, youth poetry, and Mona Akmal, Dreamfly Projects. We made lanterns and participated in the Toro Nagashi. Quoting from the program; "The lantern floating ceremony performed annual at this event is an adaption of an ancient Japanese Buddhist ritual, the Toro Nagashi, in which lanterns representing the souls of the dead are floated out to sea and prayers are offered that the souls may rest in peace. The ceremony is reenacted each year at this time, in Hiroshima, Nagasaki, and in many cities throughout the world, in remembrance of the victims of the atomic bombings. The lanterns have come to represent not only those victims but also those who have died in violent conflict anywhere and have become symbols of our commitment to making a more peaceful world." The calligraphers of Beikokuk Shodo Kenkyukai and members of the Gurudwara Singh Sabha of Washington helped to personalize the lanterns with word of remembrance and hope.
When Kathy invited me, I knew that I wanted to go because my father was a P.T. boat captain in World War II. He impressed upon me that atomic bombs are wrong. He bought books about the crime of bombing Hiroshima and gave one to each of his children. I wanted to go to the ceremony because of what my dad taught me and for his memory. Steve went and Shammond too. Kathy brought her new tenant, Harley, a landscape architect student from Taiwan. We made lanterns with all the other people gathered on the shore of Green Lake.
When it got dark, during the procession of lanterns to the lake, I heard drumming, flute, dulcimer. Walking next to me was a Buddhist in orange drape. Others were chanting. I started singing "Silent Night." There was no protest in my singing nor sense of competition. I experienced permission and invitation in the diversity of the gathered community. The lantern ceremony reminded me of a Christmas Eve candlelight service where the congregation sings Silent Night and the electric lights in the church are turned off while each person present holds a candle. The light is passed and candles lit from the Christ candle on the communion table. The Toro Nagashi was outside at the lake with crowds walking toward the water, each carrying the light. We were all walking to launch. I got to the break wall and found that others were handing their lantern to a people knee deep in water assisting with launch. I wanted to set my lantern in the water myself so I walked along the lake shore until I found a gentle slope. Though it was dark, people on shore recognized my quest, reaching their hands to help, showing me where I could step without falling. "Silent night, holy night, all is calm, all is bright." My lantern touched the water. I let go of the lantern's wooden base. My light set too near the shore reeds. I needed a stick to push it further. "Round yon virgin, mother and child, holy infant so tender and mild...." Close by a boat with oars was resting. I borrowed one oar. Now I had a familiar tool. I returned to the water's edge to gently push my lantern into deeper water. "Sleep in heavenly peace. Sleep in heavenly peace." The lanterns were bobbing. Each, a wooden base with candle in the center. Four corner poles held the white velum paper in a square so that the black ink drawings and markings were vivid banners. A mainstream of lanterns floated with peace messages. I stood on shore holding an oar straight up and watching my light join the parade.

Mr. Bean

2010-08-06T17:53:00.000-07:00

One of the reasons we came to Seattle Cancer Care Alliance for the bone marrow transplant is the infrastructure and support. Volunteer Services work overtime. One example is Lunch and Laughs. On Tuesday, I got a free lunch, a hand-out on the therapeutic virtues of humor and a Mr. Bean video viewing. I don't usually like comedy because a large part of comedy seems to be the invitation to laugh at someone hurting or being hurt. Mr. Bean is different, perhaps because he is so serious being counter-cultural. In one episode Mr. Bean makes a sandwich in the park. He uses a scissors to cut a loaf of bread. He washes a lettuce leaf in the drinking fountain, takes off his sock, shoves the lettuce leaf in the sock toe and twirls the sock as a lettuce spinner. Mr. Bean is good medicine.

In the World, Not Of It

2010-08-06T17:41:00.000-07:00

Return to Washington Island. What will it mean? The kids hope to start school on September 1. We will assess and work with our molded house and car sooner than later since a fungal infection could be deadly for me. REI has a large-size camp rest mattress that I'm buying and carrying home on the plane. Tenting is my choice. After spending over 1,000 nights in a tent during my canoe expeditions, I'm looking forward to sleeping under stars again. The tan team wasn't real impressed. "Don't sleep on the grass," said the tan team nurse. "Spread a large tarp." I wonder if she is a camper. How did she know a tarp usually marks the tent's foot-print? Volunteers on Island have cleared out the flies and food that were left and the maggots that got busy after Joe was evacuated. From e-mail and phone reports I'm hearing that mold and mess are rampant. This past November, Becky Kuznicki nominated our family for ABC Extreme Home Make-Over. Yesterday, Dorothy Lindsey sent an article from the Green Bay newspaper noting that Lexington Home Construction are standing by for a northeast Wisconsin ABC make-over in August. Five finalists are in the running, the winner to be announced August 14. Who knows?

Bok Choy

2010-08-04T21:54:00.000-07:00

"I'm bored," says Korrina as she lounges on deck of the 38 foot sloop afloat in Elliott Bay. We've enjoyed a bar-b-cue with table clothes and flowers on the tables, balloons, magician, hoola-hoop dancer, door prizes, free sun-screen and wrapped chewables, and a boat ride organized by Beams and Dreams, a not-for-profit organization started by 13 and 15 year-old brothers helping cancer survivors. I knew our family needed to be matched with a skipper stout of heart. We got Justin, an unflappable young man who welcomed us aboard and headed out from the break wall into open water.
We toured the Seattle piers, cruised by the waterside of the Aquarium, minisculed ourselves beside the Norwegian Star tour boat, watched the containers loaded for ocean travel. The skyline of Seattle never looked so good.
Korrina got bored after her balloons took off from her grasp with her necklace attacked to the ribbons. If only I had the presence of mind to sing to her........" In a moments time the pirates could attack, in a moment, your brother could poke and whack, in a moment a sea gull could poop in your eye, in a moment, a cloud could fall from the sky, in a moment the snarks could bite your toe, in a moment the wind could tie your hair in a bow.... so enjoy this moments of quiet." I didn't sing but decided to make conversation with Justin. I was talking to him about our cab ride in to the marina. He asked where we live. When he heard the Pete Gross House Justin explained that he moors Bok Choy in Lake Union. Did we want to go through the Ballard locks with him? Believe it! The day changed on that dime. We were no longer sight seeing. The kids got to steer. We stopped to pull Justin's crab pots. 15 crabs in one pot and at least 10 in the other! Justin was incredulous but it seemed no surprise to me. He had set down his nets on the side of hospitality and generosity. Other boaters reported a terrible crabbing week with a haul of one or two. Joshua, Korrina, Kayla and Shammond learned to hold and measure crabs, throw back the females, feel the shells for soft and throw back, store the keepers. Kathy LeClair took pictures. The "I'm bored" was never heard of again. Locking through was a life-time adventure for the kids and ecstatic for me recalling my 2,348-mile Mississippi River Challenge during which I paddled into and rode through every lock in an 18-foot canoe for the Guinness World Record. The kids worked the sloop's bow and stern ropes to attach Bok Choy to the sailboat to port side in the large lock. A harbor seal cavorted at our bow in the current. Kayla regaled us with Habor Seal habits like eating squid, fish and clams since she learned these facts and more in Hutch School during her Harbor Seal project. The lock opened. The bridges parted and lifted. It was past 7:00 p.m. when we motored into Lake Union and moored. Joshua and Shammond helped carry the crabs from the dock to the parking lot. Justin owned a van. We all fit in.

Homeward Bound

2010-08-04T21:40:00.001-07:00

The Seattle Cancer Care Alliance volunteer came to pick up Kathy today at 6:00 a.m. He introduced himself and opened the trunk of his car. "I'm Kathy," she told him. "You don't know the half of it," I tell him. She wouldn't brag so I had better tell him. I'm standing on the curb in my robe and slippers making testimony. "Kathy canceled a trip to Ireland. She came out here in April to stay thirty days and decided to stay with us all this time. She carried my bags and washed my clothes, changed my bed, cooked my food, took care of our kids, sat through appointments, held my hand, rubbed my back, made sure I took my medicine, listened to every dribble and pip I had to say to get through this bone marrow transplant and got on her knees by the side of her bed to pray every morning when she woke. You got precious cargo here," I reported. "I'll probably weight down the plane with this suitcase," Kathy said as the driver picked up her belongings to load into the trunk. "The heft you are carrying is no suitcase but a heart of gold," I counter. Kathy settles herself in the passenger seat. She looks radiant. If air traffic control and schedules work for good, she and Gene have a plan to reunite and have the door of their home open and ready for Wednesday evening Bible study tonight.

Ninety-Nine Sheep and the One Lost

2010-08-04T20:36:00.000-07:00

Steve really wasn't lost. He was on Washington Island. When Joe was evacuated from the Island I figured it this way: Steven had "lost" his mom to cancer (I had spent more days in treatment since my diagnosis in November, 2009, than at home.) Steve had "lost" his dad to break-down, (at the time of Joe's evacuation from Island, Joe didn't know who he was nor where he was). Steve had lost his birth mom and birth dad before us. At fifteen years old, he sure didn't need to loose his life which includes playing soccer, drumming in a praise band at Bethel Evangelical Church, close friendships and much more.
When a person has cancer, the to-do list puts "settle your affairs," near the top. Who gets the toaster has nothing to do with it. "Mom, are you going to die?" is a routine topic at our house. After I tell them that one day I will die, the next question is "what will happen to us?" I listen to each one of our children for what they want for themselves. I already knew with Steve. He loves the Island. In April, before I left Washington Island for the bone marrow transplant in Seattle, I spoke with Joe, the school counselor and administrator and shared my intention. They concurred. Then, one Saturday night at the Bethel Church, after singing praise music with Steve as a drumming worship leader, in the band with his friends Andy and Joey and Ben the youth leader, I asked Lisa Munao if she had time to talk. We sat on the little chairs in the church nursery. I shut the door and gave a preamble summarizing my health risks before cutting to the chase. "If I die, will you take my son?"
I offered my little boy, my little boy who came to me when he was three -- brought to the door in grey and green Spartan t-shirt and shorts bulged with a diaper by an emergency foster care provider working with Children's Protective Services. That first night, twelve years ago, Steven walked into the parsonage, stood in the hallway and started pounding his head against the wall. I sat down on the floor, called out his name and held out my hand until he took my fingers. When Steve was five his adoption was finalized. Steve was seven, when three-year-old Joshua arrived. Joshua stood at the back door window, looked out and cried on his first night with us. Steve walked over to Joshua, put his arm around Joshua, patted his shoulder and said "It will be o.k. buddy." Steve moved over for every new kid who came into our house, shared his toys, shared his mom and dad.
When Joe was evaculated from Washington Island, Steven stayed on Island with the Munao family. Now is the time to re-bond as a family, orient Steven to what we are living in Seattle at the Pete Gross House and Seattle Cancer Care Alliance, provide him with time, space and support to process before school starts.
The night that Steve arrived in Seattle, the door on Room 603 at Pete Gross House had a welcome home banner with his name on it. Even after all the kids fell asleep, I couldn't sleep that night. For a long while, I stood by Steven's bed listening to him breathe.

Now We Are Six

2010-08-04T13:16:00.001-07:00

"I want to go with you to the airport to pick up Steve," says Micala and Shammond. "If you are going with me then you will have to get used to being embarrassed because I'm going to call his name, hug and kiss him and probably cry," I respond. "We're going," they both announced. When we arrive at the airport, on cue --the glass doors open for us and I start crying even before we get into the terminal. Micala glares and says "mom, you are embarrassing me." I start yelling out, "Steven Ervin, Steven Ervin," even before I can see him, hoping he hears my voice in the crowded baggage claim. Shammond spots him first and runs to Steve's side. Steve allows the I-haven't -seen- you- since- April- 12- when- we- left- Washington- Island- for- Seattle hug and gives one back and I don't know if it was because he was tired, jet lagged or just relieved that he was cushioned with family but he thought his bag is red and it hadn't shown up so we report the bag lost. We were still in baggage claim when an agent brought a blue bag that said "Steven Ervin." Steve is home (away from home) with a bag of dirty clothes from Teen Angel Camp. August 1, 10:29 p.m. touch down flying United from Green Bay to Seattle. Six kids ages seven through 15 in our Pete Gross two bedroom apartment. Praise ye the Lord!

Jump Happens

2010-07-28T12:17:00.000-07:00

So I'm in with the tan team, Tuesday, July 27. The room is crowded with my nurse Pat, Brandea Paulk, PA-C, and Derek Stirewalt, MD, all masked and gowned, masked and gloved, following clinic isolation procedures since I still test positive for para-influenza virus. Kathy LeClair is with us too but she isn't gowned up. My threat could be deadly for other immune suppressed patients. We go over my questions and I report again that I still can't jump. Even though I'm working diligently in physical therapy, it seems that no jump continues to be symptomatic of my post transplant condition. Stirewalt says my condition ranks in the upper 90% of patients at the clinic and then I hear him say "discharge in a couple of weeks." I stand up from the patient exam table, put my water bottle down, bend my elbows, hunch from hips and knees and launch. My feet make it off the ground. I jump two more times in succession for good measure laughing and exclaiming "I'm jumping. Did you see that. I jumped." And, just in case they didn't see it even though I'm right in front of their faces in a very small room, I jump again. My body was waiting to jump for joy.

Sampling

2010-07-28T11:23:00.000-07:00

Monday, July 25, Kathy LeClair takes Korrina age 10 on the bus to Camp Sparkle, Gilda's Club. Kayla age 7 walks to Hutch Camp in the Pete Gross building. I walk Shammond age 11 to the Center for Wooden Boats on Lake Union, Day One, sailing lessons. Joshua age 11 is at the week-long over nights at Camp Indianola, United Methodist Church. Micala age 12 stays home. 1:30 blood test for me. 2:00 bone marrow biopsy and skin biopsy. I walk home with the big bandage. Since the para-influenza virus is still with me, I'm in isolation and not allowed on the SCCA shuttle. Shunned from the shuttle is a blessing in disguise. I'm getting good exercise on the Seattle hills. Mercer north of Minor is no gentle incline. Looks straight up from the bottom. I get back to the Pete Gross House in time to see Kayla and Shammond heading out with Debbie and Megan, Side-by-side volunteers enroute to dinner and paddle boats on Green Lake. They will rendezvous with Micala who has finished her one-hour with Zoie the tutor and gone on to guitar lesson with a volunteer driver. Getting in the door at the Pete Gross House, I have to sit down, take a load off and breathe before I get into the elevator. A healthy schedule for all of us.

Sharing my secret

2010-07-26T16:02:00.000-07:00

If you ever have a bone marrow biopsy make sure to sing. Don't wait until you are laying on the table worried. Don't wait until the needle starts poking to drill the bone. Start singing the moment you enter the room. When you are laid on the table, keep singing. As the doctor positions you on the procedure table, be singing. Front end load the procedure with song. Sing from beginning to end and eventually you will hear "all done." And, it will be. And, maybe you will laugh out loud because you won't believe it finished. Then and only then can you shake and cry and know you are through. It doesn't matter what you sing. Just carry a tune.

Devotion 61, Day 39 Post Transplant

2010-07-25T23:20:00.000-07:00

The devotion of God is certain because God carried me one more day.

Devotion 62, Day 38 Post Transplant

2010-07-25T23:16:00.000-07:00

The devotion of God is certain in view of the University of Washington Hospital from the Mount Lake Cut waterline instead of looking out from inside the window on the 7th floor.

Devotion 63, Day 37 Post Transplant

2010-07-25T23:12:00.000-07:00

The devotion of God is mirrored in the freedom Chris Cunningham extends when he invites our family to leave the confines of our apartment and cruise Lake Union in a home made boat.

Devotion 64, Day 36 Post Transplant

2010-07-25T23:07:00.000-07:00

The devotion of God is demonstrated in Kathy LeClair's choice to remain with us as care provider when I am released from the University of Washington Hospital. Thanks be to God.

Hoop Dream

2010-07-23T21:19:00.000-07:00

Shammond, Joshua, Kayla, Kathy and I are at Cascade Park a few blocks from the Pete Gross House. The kids are playing basketball with the park regulars. Reggie, David and two others are passing the ball to the kids and encouraging every basket they make. I'm sitting on a big rock, watching. Spent cigarette butts litter thicker than the landscaping bark around the base of my boulder. The spirit of play is so encouraging that I ask if I can have a turn.
I get up from the rock, wobble to center court and stand under the basket. When the ball is handed to me, my tears start. I am holding the ball looking up at the basket and my eyes are blurred from the wet. "Mom," says Kayla. "We play for fun." Like why are you crying? Because fun feels so good in my hands and I haven't felt fun for too long. I can't jump. My neuropothy and post transplant muscles won't propel my two feet off the ground simultaneously. In physical therapy, I'm working to jump. I got a goal to jump. I am standing under the basket and I hear Joshua say "Do it for grandpa Lloyd." And Kayla chiming in "You can do it for grandpa, mom." The kids know my dad was a state basketball champion in Illinois. They call out his name to cheer me on.
I fire the ball. It didn't graze the bottom fringe of the hoop. Joshua retrieves the ball and puts it back in my hands. "Step a little closer mom," he instructs. "You can do it mom."
I've spent the past three days in the family resource center at the Seattle Cancer Care Alliance and sent out an appeal letter to raise money for our mounting debt. I've heard my car is molded on Washington Island. the house is molded and uninhabitable. My tan team at the Seattle Cancer Care Alliance says that I won't be able to vacuum or clean mold for over a year because of my infant immune system. Joe's doctor called and said that if Joe has Alzheimer's then he is not capable of parenting. The ball is in my hands and I'm trying to make a basket. I'm not crying because I can't make the basket. I'm crying because the ball is in my hands.

No Chicken

2010-07-20T13:41:00.000-07:00

Another lumbar Puncture is scheduled for 2:30 today. Seven-year-old Kayla doesn't want to go to Hutch Day Camp today. She wants to go with mom. "I don't think the doctor will let you come into the procedure room with me," I explain. "The doctor uses a needle to tap into my spinal cord and draw out spinal fluid for a test. After the spinal fluid is withdrawn, the doctor pumps in chemotherapy. The chemotherapy goes into my spinal fluid and baths my brain in chemotherapy.
Kayla put her hands on her hips and spread her feet apart so that she had a good sturdy stance and looked at me straight on. "They may think I'm little mom but inside I'm strong and old. If I can see a chicken die and have it's head cut off and run around for five minutes, then I can be with you in surgery."
Kayla went to clinic with me. I reported Kayla's intention and resolve to the team. "O.K., she can come in," the doctor said, "but she can't bump my arm."

Wings

2010-07-05T02:15:00.000-07:00

As I boarded the Delta Aircraft for Detroit on Friday, July 2, the cockpit door was open so I stopped to speak to the pilots. "I am a bone marrow transplant patient, 57 days post transplant, on my way to see my husband Joe who is delirious and restrained in the hospital in Lansing, Michigan. The Seattle Cancer Care Alliance must really trust you guys because they don't let anyone out before the required 100 days. They gave me 48 hours to get back to the Clinic."

As transplant patient, wife and mother, I was more afraid than I had ever been in my life. My infant immune system is only as strong as the medications that are pumped into my body. To be with Joe, I would enter the infectious disease world of a general ward hospital. Joe didn't know his name nor where he was. I now had parenting responsibility for all six children.

"I think I need some wings," I said. "I'll go talk to the steward about it."

"You won't need to do that," the captain answered. He unpinned the gold wings from his uniform and handed them to me.

Zuzu's Petals

2010-06-28T21:31:00.000-07:00

In the lobby of the Pete Gross House, next to the wall of mail shoots and cubbies there is a donation cabinet with a sign: Please put items underneath in the cabinet. Un-opened, and non-perishable items only please. -- Thank you! Nothing ever changes in the lobby except what is on and in the cabinet. The conversation center with table and chairs, t.v., game shelf, couch and stainless presentation acknowledging Friends of the Pete Gross House and Council Members and the biography and big picture of Pete Gross, the brochure stand with bus schedules stay the same. The cabinet is the lobby wild card. We have found oatmeal, tomato soup, pants that fit, socks, books, magazines, dolls, head bands, medical supplies, chips and assortment of give-aways for the taking. And, we took. For the first three months of our time here, I was a rag picker like everyone else. Wow, look at this! We can use this oatmeal. I put the cardboard cylinder of oats under my arm and push the elevator button to 6. A sense of giftedness came over me every time I made a find on the table. A few days ago, I started to see the table differently. Angelia, a German woman who was in Seattle with complications since November! finally went home. We invited her for dinner the night before she left. She brought us grocery bags of food she couldn't pack. In addition to what she brought us, the cabinet in the lobby was full of her over flow. She commented to me on how fast the loot disappeared Angelia taught me a whole different way to approach the cabinet -- the cabinet is like Zuzu's Petals and the tinkling bell that rings in "It's a Wonderful Life," signaling that an angel got their wings. When I see an item on the donation table, I know that somebody broke out of here. The stuff left on and in the cabinet is dumped so the escapee isn't weighted down.

For the Love of Spinach

2010-06-20T18:32:00.001-07:00

Korrina and I accompanied Kathy LeClair to gospel meeting on Sunday afternoon at 4:00 p.m. Kathy's Sunday morning go-to-meeting buddies, Travis and Glenda picked us up for the ride. Kathy, Travis and Glenda give no name to their denomination. Their tradition is home church. The gospel meeting happened in a rented town hall in Kenmore where a cluster of home church participants gathered for hymns, prayer, scripture and interpretation. No stained glass, no church building to support. No offering. No announcements. No cookies afterward. When I told Glenda that I liked the simplicity and focus of the meeting she said "we don't have a choir or band." The hall was full of men, women, children and youth, an intergenerational mix of congregation.

Debbie Cross and Susie Perry spoke at the meeting. In Kathy's tradition, these women are called "workers." Workers have no earthly possessions. Workers sell all they have when they go into full time ministry and take no salary. Kathy calls workers homeless. "They go out two-by-two according to the way that Jesus sent disciples," Kathy explains. I looked around the hall. All the women in the room had hair like Kathy LeClair. There were no bobs, page boys or fuffs. Hair is not cut but pulled together, up and pinned in a bun. Kathy describes her hair as scriptural -- an outward sign of an inner submission. I remembered Verlen telling me that short hair on a woman is an abomination to God. He used to point out the scripture in the bible that told him so. At the gospel meeting, I kept my wool cap on. God knows I'm bald.

Debbie and Susie shared two stories of healing and gratitude. Susie spoke read and spoke from Mark 5, the healing of Legion. Legion, the strong one no one could subdue, the one who broke all chains put upon, the one who was so used to being attacked, he warned Jesus not to hurt him as Jesus came near. When Jesus had his way and the healing accomplished, the people came near and they saw the man (called Legion) who had been possessed by the legion of demons, sitting there, dressed and in his right mind. - Mark 5: 15 Debbie read and spoke on Luke 7 where Jesus is anointed by a sinful woman. A Pharisee asks Jesus to dinner and then watches as a woman from the street comes in to his living room. She brought an alabaster jar of perfume, and as she stood behind him at his feet weeping, she began to wet his feet with her tears. Then she wiped them with her hair, kissed them and poured perfume on them. -- Luke 7: 38 "The Pharisee says If this man were a prophet, he would know who is touching him and what kind of woman she is -- that she is a sinner. -- Luke 7: 39 Jesus makes it clear; Do you see this woman? I came into your house. You did not give me any water for my feet, but she wet my feet with her tears and wiped them with her hair. You did not give me a kiss, but this woman, from the time I entered, has not stopped kissing my feet. You did not put oil on my head, but she has poured perfume on my feet. Therefore, I tell you, her many sins have been forgiven -- for she loved much. -- Luke 7: 44-47

On the way out Travis asked me if there was anything we needed on the way home. At first I said no, but as he drove on, I got to thinking about his offer. He meant it. I had been wanting some spinach so I asked Travis if we could stop to buy some. After a few miles he turned the car into the parking lot of a grocery. The car turned into the parking lot and there it was -- the band! Under the overhang of the building was a brass band in uniform and step. Deep, cement moving, vibrating, full sound coming from a team of kids who had chosen life. The piped piper is a pip squeak compared to the full brass band drawing us in. I fairly lept out of the car before it came to a stop. I had tears in my eyes remembering Joe taking me to the Spartan Spectacular at Michigan State University. We would sit in a front row and feel the sound of the big horns blow our faces. The band outside QFC had more than music at work. In pouring rain, tuba players were dipping, swaying and reaching embracing heavy instruments like dance partners. The trombone section had synced and practiced their steps. The cymbal player faced the band and lifted her cymbals for the drummer to pling. Her bottom was moving in effective rhythm. How did she do it? That girl played her bottom like a percussion instrument! Everyone and every body was moving. French horns, cornets, trumpets appeared to be dancing as the students played. The conductor wore a fedora, green ascot, top coat and tennis shoes. He was a big, over-sized guy dancing on the pavement. At the conclusion of each song he would pull a small, damp piece of paper out of his pocket and name the next song. And, one, two, three.... and the brass breathed into life again. Their full blown music transported me out and away from cancer. They were authentic. I wanted to be authentic too so I took off my hat and moved to the music bald with the rain coming down my forehead. Foot stomping, toe tapping, shoulder jumping beat. I lifted my feet and marched with the band in my place. When they jumped, I tried to jump but found that I couldn't. Still, the cancer had no sway in the victory of the presence of brass blown forth. It seemed to me that the feet of Jesus and all of us were bathed and anointed with the youth full ensemble and power of horn. Like Legion in the grip of Jesus, torture was through. Evil spirits were driven away and I was in my right mind as never before with the accompaniment of the clear, teamed presence of creative passion. Solos started. Each student rifted and shown, played their given instrument while the band kept the current headed toward the big sea sound. A young black student had a sweat shirt with a hood pulled over his cap brim so that I couldn't see his face. When he blew, he bent and moved from the ground to the sky. It wasn't enough for him to blow and produce. His body and soul gave way to the wave of music coming through him. The music kept on. I wouldn't have quit but Travis came to my elbow and said "should I go in and get the spinach?" I went into the grocery and picked out my bunch since I knew I had to pay for it The doors of the grocery were open and the brass sounds invaded even the day-old bread section and the frozen food coolers. For good measure, I put watermelon and pizza into the cart. Kathy bought a lemon cake. The music extended into the building as far as the produce section. We were shopping, choosing spinach to the beat. At the check-out the clerk at the counter looked like business as usual. "Are your toes tapping under this counter?" I asked. She gave me my total but hadn't given herself over to the sound. Perhaps it was harder, sitting there by the cash register with a job to do. Like the Pharisee who had invited Jesus to dinner. His living room was taken over by Jesus and the women in tears and he was not all that comfortable by the drama. For me, brass is irrepressible. I leaned into it. "Paper or plastic?" Why would I need a bag? I just wanted to take that bunch of spinach, shake it like tambourine and wave, so the water droplets could fall from the leaves and remind me to baptism. The desire of spinach was in my heart and God led us to the band.

Devotion 65, Day 35 Post Transplant

2010-06-20T14:30:00.001-07:00

The devotion of God poured out upon God's people is noticed in the outdoors, fellowship, and celebration of www.washingtonislandcanoeandkayakevent.com.

Pill Popper

2010-06-20T08:36:00.000-07:00

June 15, I went to my weekly clinic appointment with tan team doctors. The top issue on my list was medications. I lined the bottles of medication I am taking on on the counter in examination room 5. Anti-viral, anti-fungal, anti-bacterial. What medications can we reduce? "You need all of them," I was told. "And, we're giving you a new one today -- Dapsone." I picked up the new drug at the pharmacy and read the print. Dapsone is a drug primarily used for those suffering from leprosy. The drug causes cancer in rats and mice, cautions a "definite but unusual complication of peripheral neuropathy (I don't need any more neuropathy!) and carries a host of other possible complications. Additional adverse reactions include: nausea, vomiting, abdominal pains, pancreatitis, vertigo, blurred vision, tinnitus, insomnia, fever, headache, psychosis, phototoxicity, pulmonary eosinophilia, tachycardia, albuminuria, the nephrotic syndrome, hypoalbuminemia without proteinuria, renal papillary necrosis, male infertility, drug-induced Lupus erythermatosus and an infectious mononucleosis like syndrome. The tan team is prescribing the medication for me because it can ward off a pneumonia that is partial to transplant patients. Dapsone is less likely to reduce blood counts than the Bactrim that has been an on-again, off again prescription I've been been ingesting since diagnosis. When I first arrived in Seattle, Dr. Collins told me "You have to take all the medications we give you." Well, I'm coming back at you. I'm going to make my tan team appointment this coming week and line up all those medications on the counter again and revisit the medications. Too many times I've heard, "Oh, if you read all the fine print of those prescriptions who wouldn't take anything" and "consider the alternative " and the latest encouragement "you'll be taking many of these drugs for six-months to a year following transplant." I want to consider all the alternatives. Hasn't anyone here heard "less is more." I'm seeking safety zones where I can let my body be. I hate being called a patient but in this case, I claim patient fatigue.

When Wheels Falling Off Can't Wait

2010-06-17T16:46:00.000-07:00

Executive Summary: Micala didn't go. Mom got over it.

Narrative:

"I have a surprise for you girls," I announced one day when Micala, Korrina and Kayla got back to our apartment from school. Micala's I'm-dragging-home-from-school-lugging -my-back-pack-and-just-want-to-sit-down mode switched to instant excitement and energy. "Do you mean that we get to go home early?" she said. She wasn't asking a question, she was voicing hope.

"I don't know about that right now but I have five tickets to the ballet," I answered, still in awe of the gift. Micala walked past me into the bedroom without any apparent interest in the dance. I talked with Korrina and Kayla about Ellen Walker, the Pacific Northwest Ballet and our date at the for Saturday. "We will all wear dresses," I said. "The ballet, the ballet, and take ballet baths before we get dressed and Kathy gets to go too." Korrina started twirling in the living room. Kayla jumped up and down with a big smile and giggles.

Saturday came. Mid morning, Korrina announced: "I'm not going if I have to wear a dress." "You have to wear a dress," I said. "I don't have a dress," she countered. "What about this one in the picture that was taken last week," I pointed to the photograph evidence. "I won't wear that dress," she reported. Instead of arguing, I went into my closet and came back with my offering. When I came to Seattle, I brought two skirts with me in my suitcase. Korrina could wear one. "Here is a shirt and blouse that Grandma Venita gave to me and I love wearing it and now you can wear it to the ballet," I said with enthusiasm. Korrina looked. "This is a cotton Adrienne Vittadini Sport shirt and shirt that will look beautiful on you and we will have three generations celebrated with you wearing grandma's clothes." She did not protest. I felt successful. Korrina accepted the skirt and personalized the outfit by rejecting the matching shirt and choosing a plain white blouse out of my closet.

At 12:45 a.m., I was gathering our party. "We need to go. Ellen said there would be crafts in the lobby of the McCaw Hall and mini-ballet lessons starting at 1:15. Ballet at 2:00. Micala emerged from her room in pants. "We are all wearing dresses," I said. "Then I'm not going." Micala said and walked back into her room. I followed. She retreated into the bathroom and locked the door. "Micala, what is happening? " I believe I repeated the "we are all wearing dresses, you have to wear a dress," more than I needed to but then I changed to say -- "You can wear anything you want, we're going to the ballet." Her reply through the locked bathroom door: "I'm not going."

I accompanied Kathy, Korrina and Kayla downstairs in the Pete Gross building but could not leave the building. I didn't have all my girls and my dream was coming unraveled. I asked them to wait and took the elevator back to the apartment. Micala had loosed herself from the bathroom and was in the living room on the sofa with her cell phone. "Micala, we're going to the ballet," I repeated. "I'm not going." She quickly walked past me, returned to the bathroom and locked the door.

For about fifteen minutes I could see nothing but my expectations. Going to the ballet was my dream. The tickets had been given. I had been in the hospital 35 days. Volunteers had taken our girls out and about and now it was my turn and Ellen had helped this to be my treat and I wanted to be with our girls. Before Saturday and during the planning for the day, I didn't even know if I would be able to go and had a person in mind to take my seat should I not be feeling well enough. I even asked the tan team doctors if I could go to the ballet given that I would be in a crowd of people. They had said "yes" and here I was ready to go and I was standing outside the locked bathroom door crying and pleading with Micala. Besides my disappointment, I felt responsible for the free ticket. Micala didn't seem to understand nor care what it meant to have a free ticket to the ballet. I left our apartment and went up and down the 6th floor hallway in the Pete Gross House knocking on doors, trying to find someone who could use the other ticket. No one answered at the doors where I knocked. I returned to our apartment to plead with Micala one more time. Korrina, Kayla, Kathy and I missed the crafts and mini-ballet lessons while I stood outside the locked door, knocked, kicked once and tried to reason. "I'm not going. I just want to go home," she repeated.

The time of me being away in the hospital, the missed communication, the heart-to-hearts that did not happen in the midst of treatment train wrecked with Micala's longing for home, missing her friends, dad and brothers. Micala has endured Seattle glued to her cell phone and texting. The "honey I'm home" expectation of mine without regard for what had happened at home and in the hearts of those at home while I was gone began to come real for me. "I'm not going. I just want to go home," Micala repeated. Saying "no" to the ballet was a tip of the ice berg.

I missed the holy moment. I wasn't ready to revise my expectation. I used my cell phone to call Beth, one of the volunteers who has a girlfriend repore with Micala, explained our stand-off and asked for help. "I don't want to talk to Beth," Micala said. Eventually, Micala unlocked the bathroom door long enough to take the cell phone and talk with her friend. I could hear Beth saying "Micala, you have to go, you are breaking your mom's heart."

Hearing (what sounded to me as) the guilt trip in Beth's words, helped me gain footing from the increasing emotional spiral. I had a choice and made one. I stopped begging and crying at a locked bathroom door, accepted Micala's decision and joined Korrina, Kayla and Kathy in the lobby. The cab had come and gone. We called another. Twenty minutes to curtain. Once in the cab, the driver was talking on a head set, I was reflecting upon what had happened. Fortunately, I looked up. The cab was snarled in Pike Place Market traffic. Ellen Walker from the ballet had said the Pete Gross House was close to McCaw Hall. "Please stop talking on the phone. Where are we going?" I asked him. He said the name of the hall and it wasn't McCaw. "What if you had gotten there at that other hall and dropped us off and we had paid and gotten out and you had driven away and the doors of the hall had been locked?" I asked. "The Pacific Northwest Ballet is at McCaw Hall near the Space Needle." He was taking us to the other concert theatre across town! Kathy was sitting in the front seat with the driver. "Kathy," I said from the back, "if we make curtain, this will be a miracle." "Five minutes," the driver promised. He diverted from town through what looked like a sea of red lights and promised to get us to McCaw Hall in time. He did. Dropped at the door. We were caught up in a sea of little girls in frilly dresses, little boys in suits, mom's in dresses, dad's with ties and of course, all manner of dress and blended family configuration headed through the glass doors. "Thank you so much for being here," I said to Korrina, Kayla and Kathy. We made our way to the ticket window and received our five tickets held under my name -- tickets in the orchestra! Kayla matched tickets to letters above the doors and located Section F. She led us toward the entrance. A woman with white gloves took our tickets heard me tell that we had an extra one and that Micala did not come. "You can just give that one away," she said. I was going to keep the ticket as some sort of martyred albatross of heart sick but she gave me permission to let it go. Five minutes to curtain. I had no time to return to the ticket booth for a give away. Then I saw an African American woman hustling toward the counter. "Kayla, take this ticket to her," I said. Kayla took the ticket on a run. In the giving and passing of that ticket, I emotionally let go of Micala not being with us. The woman was delighted with the ticket and couldn't believe her good fortune. During intermission, we would learn that her twelve-year-old daughter was dancing in Act III of the ballet. The proud mom shared part of her story and we got to meet her daughter, (same-age as Micala) after the performance. Now, the house bell rang signaling an imminent start to the ballet. The stragglers started to hurry. I hobbled and held onto Kayla's shoulder to make it safely down the slope toward the orchestra seats. I had a moment to peer into the orchestra before taking my seat. The cellist looked up from the pit and made eye contact. She smiled and I smiled. "Thank you for making music." If I could just have honored Micala as simply. Sounds of instruments tuning and preparing joined with the hundreds of audience voices settling into a hum within the auditorium. I leaned into the excitement. The challenges of being mom and transplant patient fell away. The red velvet curtain sparkling in a thousand places with brilliant, twinkling, tiny radiance of light. Then, in an instant, the lights dimmed and we began the reverent, expectant hush.

Micala's Poem

2010-06-17T16:38:00.000-07:00

My Delightful Poem about Winter on the Island

by Micala, age 12, 6th grade, Washington Island

I am from the island of beauty

I am from the brightest star

I am from the snow world

I am so very far

I am from the glistening ice

I am from the snowy white trees

I am from the island of beauty

I am from the island of love

I am from Washington Island

The place that shines above.

Micala's poem reprinted with permission. Her poem was written at Hutch School in May, 2010, where Micala is attending classes while being with mom at the Seattle Cancer Care Alliance. Micala's poem was chosen for Imagination Into Ink:, the 2010 Writers in the Schools (WITS) Student Readings & Celebrations, a program of Seattle Arts & Lectures and the Seattle Public Library. Micala read her poem at a poetry reading and reception for young writers on Wednesday evening, May 26.

100% Donor Cells

2010-06-16T12:32:00.000-07:00

Further results of the bone marrow biopsy came in yesterday with Chimerism testing showing 100% donor cells in my bone marrow. Hide nor hair or my cells were not detectable. The nurses and doctors are impressed. "Does this mean that my changes of Graft Vs. Host Disease are lessened?" I asked. "No," came the reply. We still have GVHD to look forward to in whatever form it shall manifest.

My lumbar puncture (spinal tap with chemo flushed into the spinal fluid surrounding brain) was scheduled for Friday, June 18 and now postponed until the following week because my blood counts are not "robust" enough. The methotrexate chemo pushed into the spinal fluid has a tendency to subdue blood counts so the plan is to wait until my counts are better before introducing more poison. O.K. by me. I hate lumbar punctures! Before they let me out of here, I understand that I will endure six of the lumbar punctures -- just for good measure. Hang in here Fons!

My white blood count is 1.72 thou/uL. Normal is 4.3-10.00 My platelet Count is 59 thou/uL. Normal is 150 - 400. Neutrophils is 0.78. Normal is 1.80 -7.00. the neutophil number is what is looked at to notice engraftment. Remember the 500 magic number. 500 being sign of engraftment. We are now at 780. Slow but so far sure.

Please continue us in prayer.

Coppelia

2010-06-16T12:11:00.000-07:00

A "deliver to current resident" flyer came through our mail box at the Pete Gross House for the Pacific Northwest Ballet. A full color graphic of dancer in costume on point with arms, wrists and fingers in grace upon expressive-grace position arrested me. The ballet. How wonderful if we could go to the ballet. I asked every one of our volunteers and the volunteer desk at the SCCA where tickets and passes are usually found. No one knew how to get tickets nor if there were tickets available through SCCA channels. The on-line site for PNB said that to make a request for donated tickets one needed to be a ballet subscriber or member. No one I spoke with at the SCCA house and through my contacts is a member. The idea of the ballet wouldn't let me loose. I called the business office at the ballet and left a message on the answering machine of Ellen Walker.
A few days later, Kathy and I were making one of our regular shuttle trips to the clinic lab. "I forgot my phone," I said before the shuttle took off. "I'll go get it," Kathy offered. Eddie, the driver said we had seven minutes before take-off so Kathy re-entered the building and went for the phone. When she came back she was talking on the phone. "Just a minute, I'll let you talk with Valerie," Kathy said as she handed the phone to me. Ellen Walker was calling.
"Of course, you will have tickets and not just for your girls, we want you to come and I've just spoken with your care giver and we will provide a ticket for her too," said Ellen. Oh my. Amazing how a day can change. Abundance heaped on, gracious, amazing, extravagant gift. I felt filled, wrapped and lifted in the joy of that moment hearing Ellen's voice, receiving the gift and being amazed. The ballet, the ballet!
Kathy just looked at me. "Now, how did you do that?" she asked. "I got this vision from looking at the flyer and I just started asking and when someone listened, even the answering machine, I just told the truth, Ellen Walker heard me and gave the tickets. It comes to this: God moved," I said. Still beaming.

Ridges

2010-06-16T11:18:00.000-07:00

The Ridges Sanctuary in Bailey's Harbor, Door County, Wisconsin, is a protected area where water and wind action have formed berms of sand parallel to shore. Within walking distance from Lake Michigan, one can stroll the ancient beach boundary at a distance from the present shoreline. Away from the surface water of the lake, the sand mounds have been in place for so long that the continued geological movement of gentle hill upon hill of sand sand is muted by emerging ferns, trees, ground vines and stubble growing through the surface.

Trees have ridges too but we call them rings. Examining the rings on a stump reveals the story of the tree. There is a ring for every year of growth. Some tree readers are so good at interpreting the story through the rings that it is possible to determine if a particular year during the life of the tree was drought or water abundant from the position of one ring in relation to the next.

My fingernails have ridges. Deep tracks across the surface of the nail as if a window casing had come down hard without cracking the nail nor leaving a bruise but indenting with indeliable impression. Each depression is a clear, 1/4" track running across the nail, most distinguishable on the thumbs. These ridge lines are caused and consequence of chemo. Even though I have been subjected to chemo upon chemo, I still can not imagine a chemical so toxic that even the nail bed scars. A cancer reader could tell part of my story from looking at my thumb. I watch my nail growing and the ridge line moving with the growing nail closer to the tip. One day the ridges in my nails will be ancient history.

Limitation

2010-06-15T21:37:00.000-07:00

So, Kathy LeClair and I are in Clinic Room 5 and our appointment is almost finished with the tan team doctors. RN, Pat knocks, opens the door a crack and says; "When you leave just go to the right and don't turn left, we have quite a bit happening down the left hall just now." I figured it was emergency. When we got out of the room and turned right, I caught sight of the gurney and team of medics gathered round. I put my head down and turned to the right. Me, the former chaplain from St. Lawrence and Sparrow Hospitals in Lansing, Michigan, me the former chaplain from the Cass County Sheriff's Department, me, the person who prays for the wounded even on the highway when I pass an accident and this time I didn't do nothing but hobble away in the opposite direction. I just didn't want it to be me. Picture me, the wimp in survival mode.

View From My Window

2010-06-14T17:46:00.000-07:00

From Room 603, 525 Minor Avenue North, Seattle, Washington, I can see the Olympic Mountains when clouds are swept away and the sun just right. The Seattle Space Needle is the tallest building west of where we live at the Pete Gross House. Micala, Korrina, and Kayla are with their Side By Side volunteers this moment traveling to the top of the Space Needle. From our apartment, I watch the Space Needle capsule traveling from ground to top and wonder if my child is on that ride. If I stood on the balcony could they see me waving? Should I call on my cell and tell them to look my way? No. I'll just watch the view from my window. After they have been on top, they will take the monorail to the food court with Debbie and Megan, the volunteer experts in fun. I catch a glimpse of what looks from here like an inch long streak of monorail heading south from the Seattle Center. The girls will be riding the sleek caterpillar-like monorail before dark. If the monorail could be a caterpillar, then I imagine waiting for the monorail as the time of chrysalis. My imagined ohhs and ahhs of the ride could be reminiscent of a birthing butterfly.

Kathy is sitting next to me in the apartment as I look out the window. "Do you think we'll go one day and ride the monorail?" she asks. I don't know. Tonight, I went to the store with Kathy Garner and had to sit down after putting a few items into the cart. I could not bag the groceries nor carry a sack. It was all I could do to walk back to the car. "I'm going to the roof garden to call (husdand) Gene," Kathy said. I return to the view.

The yellow, red, white, and green metal tented roofs of the Seattle Center Pavilion mound like mammoth bright clothes set on rocks to dry on the horizon. To the north of the Space Needle there is a crane. To the south, a building with a helicopter at rest on top. Between our building and the space needle is constant concrete, glass, steel, brick, wood, pipes and wires. The buildings rise tall from the street so that the roadway is mostly blocked from view. Closer to our building, just half a block away is a line of trees. Green tops appear to thrive in the space allowed them. A flat roof building next to ours rises to second story. I see rain puddle pools that disappear in bright sunlight. If I stand close to the window and look straight down, I see the black tarmac of parking lot with white-lined demarcation. There are straight lines marking "park between," and the hash marks cluing "don't park here," and there is a handicap parking space. My eyes are drawn to that handicap space where from my window I see the bold white paint of a wheel chair icon against black asphalt. Looking down on it, the symbol reminds me of a crime scene with the chalked shape of a body. The wheel chair icon seems to define the landscape.

If I stand on the balcony and look north, I see a slice of Lake Union. The fire works will be there on July Fourth. When I sit in the living room and look north, downtown skyscrapers are neighbors. We are surrounded.

The view from 1349 Main, Washington Island, Wisconsin, is different. The hundred year-old living room picture window is drafty around the edges and loose. The birds gather in the front yard where Joe feeds them. Wild turkeys amble into the yard to peck at the seed he puts on the snow in winter. Pheasants drag tail feathers into the yard for feeding. At times, there are so many birds of different variety bombarding the feeders that I wonder if an air traffic controler cold be helpful. Deer gather across the street and eat the bird seed that Joe puts down on the opposite side of the street for shy ones. The low, white painted fence line sits just back from the road and borders the yard where three ancient trees leaf each year and provide such shade that the grass is thin from lack of sun and too many children running, skipping, biking and skate boarding through. Ah, the view from 1349 Main. On a clear day when the trees are thin, before the full bloom of summer, I can see Trinity Lutheran Church. When I am in the yard, the driver of every passing car waves.

Tan Team Trusts Fons

2010-06-14T10:22:00.000-07:00

On the weekend that University of Washington students celebrated in caps and gowns, I graduated too. Doctor's orders quit daily blood draws! The new schedule is three times per week blood draws in the lab. Clinic consults with tan team doctors reduced from twice a week to once a week.

Graduation means I am now responsible for flushing my double lumen. The Hickman line needs to be flushed every day. Those days I am not in the lab for blood draws, I flush the line. Saturday morning, Kathy and I went into the clinic for training. Though I have watched nurse after nurse complete the procedure multi-times each day, when it was my turn, I became so intent that I broke a sweat and felt exhausted when done. The directions need to become front-line, not second nature, memorized. For months, I have protected my line, never sleeping on my stomach, watching that buttons and zippers don't tug nor tangle. Now, I am entrusted to care for my line in new ways:

Wash hands.
Remove syringe from packages by peeling the paper downward.
The syringe of saline solution will have 10 cc of solution and the heparin lock flush solution will have 5cc of solution.
Vigorously scrub the top of the clave cap with an alcohol wipe.
Hold the syringe with the cap on facing towards the ceiling and remove the cap of syringe. Carefully remove the air bubble by gently pushing the plunger slightly.
Insert the syringe into the center of the clave cap by pushing in and turning toward the right.
Unclamp the catheter
Push the plunger with alternating pressure and release (starting and stopping to create turbulence) on the syringe to inject the fluid into the catheter. This keeps the catheter clean. Don't empty the flush syringe. Always leave 1/2 cc in the syringe of normal saline. Leave 2cc in the syringe of heparin lock solution.
Clamp the catheter while injecting the fluids
Remove the syringe. Discard in regular garbage can.
Repeat steps on the other line.

Notice how graduates throw their caps into the air when the deed is done. I celebrated my graduation to flushing my own lines by taking one of the saline syringes and pushing the plunger to make a squirt gun of fluid all the way over the balcony into mid-air.

Devotion 66 Day, 34 Post Transplant

2010-06-14T09:45:00.000-07:00

....something I saw early one morning a few years ago, as I was walking up to the church. There was a young couple strolling along half a block ahead of me. The sun had come up brilliantly after a heavy rain, and the trees were glistening and very wet. On some impulse, plain exuberance, I suppose, the fellow jumped up and caught hold of a branch, and a storm of luminous water came pouring down on the two of them, and they laughed and took off running,t he girl sweeping water off her hair and her dress as if she were a little big disgusted, but she wasn't. I was a beautiful thing to see, like something from a myth. I don't know why I thought of that now, except perhaps because it is easy to believe in such moments that water was made primarily for blessing, and only secondarily for growing vegetables or doing the wash. -- Marilynne Robinson, Gilead

Rain in Seattle is blessing. A warm shower with water running over my head and down my back is blessing. Chris taking Micala, Kayla, Korrina, Kathy and me on a Lake Union boat ride to float on the water that we had only/previous watched through the window is blessing. The wading fountain at McCaw Hall where little girls in frilly go-to-the-ballet dresses take off their shoes and romp is blessing. The bowl of water at the Immanual Lutheran Church reminding of baptism is blessing. Lathering and washing hands to put infection down the drain is blessing. Fluids swallowed from a glass rather than dripped IV is blessing. Paddling, paddling, paddling, paddling, paddling, paddling is blessing.

At the well, in John 4:10, Jesus answered the Samaritan woman, If you knew the gift of God and who it is that asks you for a drink, you would have asked him and he would have given you living water. When I meet Jesus at the well, if he asks me for a drink, I'll hope to scoop the water for him and then invite him paddling.

Years ago, when racing the Au Sable River Marathon, Jesus was in the boat with me and partner Anne Koblenski. My Savior vision was not 16+ hours of full-out-non-stop-marathon paddling hallucination, merely Jesus present in the boat -- the all-out incarnation of the event. Ttwo women giving their all, bodies made by God working past the notorious runner's heart-break hill. Hitting and passing through wall-after-wall for the 150+ mile paddling race. Never floating but determined, in sync hut, hut of paddles dipping, sparkling of sun on the premier trout stream in North America as the day came on. The gleam and track of our head-light reaching through the night. Living water beneath the hull, river bend to river bend. Living water proclaimed on the bridge ahead with a sign that read "Valerie and Ann, YES YOU CAN!" Living water demonstrated in the faithful attendance of our bank runners handing food and drink. Living water apparent in the joy of paddling, paddling, paddling, paddling, paddling blessing. Living water celebrated with the medals Verlen had made and gave us because Anne and I finished 10th in the men's pro division and back in 1984 there was no women's division. Living water realized when Anne carefully took compass readings across the back waters during practice and relied on her notes during the race when fog set in and many men's teams became lost.

Reminded and encouraged, I'm splashing in living water now. Thanks be to God.

Amazing. The water blessing will also grow vegetables and do the wash.

Devotion 67, Day 33 Post Transplant

2010-06-11T09:21:00.001-07:00

When I began the devotion project, it was clear from the beginning that I wasn't writing devotion, rather noticing the devotion of God. It is barely 9:30 a.m. and I have a list of Thanks be to God:

. I slept through the night
. Kathy LeClaire brought breakfast to my bed room
. I was reminded of my mother Venita June who was Christ-like and emptied herself in service for others.
. All three girls went to school today
. The Hutch School is going on a field trip today on a ferry to Bremerton to play on the beach and Kayla will be on the look out for Harbor Seals since she wrote a special report on Harbor Seals, created a huge poster and presented to the class. Just the thought of Kayla on the look-out for harbor seals delights me.
. Eddie the shuttle driver makes a joke; "If you are late to the appointment, tell them the shuttle driver got lost." The dear man makes the same loop from Pete Gross House to Seattle Cancer Care Alliance all day, every day and the thought of him being lost on the five minute loop had the entire shuttle laughing.
. There were no horror stories on the shuttle this morning.
. The lab tech who called my name this morning was Ainoi, the gentle, stocky Asian with a ring of tattoos around his arm. Before transplant and before my Hickman, Ainoi had called my name for blood draw. I don't remember what started the conversation but he said that when he was in the army he volunteered to allow the newbies to practice blood draws on him. At the clinic, he is the guinea pig for all new applicants and hires.
. I visited the chapel and sat quiet.
. The resource center on floor three of the clinic checks out a book to me about bone marrow transplants and I can learn more about infection.
. The tan team doctors will meet with me at 10:00 and share their wisdom.

God doesn't just shape up and surface on the "good" days but I do feel especially blessed this day by God's abiding love. And, your prayers.

Devotion 68, Day 32 Post Transplant

2010-06-11T09:04:00.000-07:00

Before cancer, before transplant, whenever I would go to a restaurant with our children and we would all be sitting around one big table with menus that were sometimes bigger than the kid and the waitress would ask "is there anything else I can get you?" I would say "More time." The children got so used to my response to the "is there anything else I can get you" question that they would say to the waitress "she is going to tell you "more time." More time for sure. Going to a restaurant is such a treat. I don't have to cook. I don't have to clear the table, wash, dry nor put away. The kids are busy with their crayons and restaurant supplied kid-busy supplies. I'm able to sit and be.

After transplant and I hope after cancer I read Ecclesiastes 3 again:

There is a time for everything
and a season for every activity under the heaven:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to heat,
a time for war and a time for peace.

Perhaps my plea will change now from wanting more time to knowing what time it is. And, praying that this time is one of healing. God help me that I will be able to sit with all six of the children again around a restaurant table and the waitress will come by and ask "Is there anything else I can get you," and I will look at the children and look at her and say, "No thank you, we have everything that we need." And, I will smile. And, the children will look amazed and then go back to their coloring and tic tac toe and maze decipher and since the time is always moving, Micala may be holding her cell phone and texting and Steve's face will be sprouting more whiskers.

The secret of health for both mind and body is not to mourn for the past, not to worry about the future, not to anticipate the future, but to live the present moment wisely and earnestly -- Buddha

Devotion 69, Day 31 Post Transplant

2010-06-10T15:37:00.000-07:00

Sweet hour of prayer! Sweet hour of prayer! that calls me from a world of care, and bids me at Creator's throne make all my wants and wishes know. In seasons of distress and grief, my soul has often found relief, and oft escaped the tempter's snare by thy return, sweet hour of prayer!

Sweet hour of prayer! Sweet hour of prayer! the joys I feel, the bliss I share of those whose anxious spirits burn with strong desires for thy return! With such I hasten to the place where God my Savior shows God's face, and gladly take my station there, and wait for thee, sweet hour or prayer!

Sweet hour of prayer! Sweet hour of prayer! thy wings shall my petition bear to God whose truth and faithfulness engage the waiting soul to bless. And since God bids me seek God's face, believe God's word, and trust God's grace, I'll cast on God my every care, and wait for thee, sweet hour of prayer. -- Words by William Walford, 1845, Music by William Bradbury, 1861

Second Question for the Tan Team

2010-06-09T20:37:00.000-07:00

My second question for the tan team in yesterday's clinic appointment was; "Why am I having a bone marrow biopsy scheduled for today. I have met so many people whose cancer has come back following bone marrow transplant. If mine is back I don't want to know about it right now and what could we do about it anyway with such a fledgling graft?"

Brandea Paulk, PA answered this one: "We are not expecting to find cancer in your marrow. We have to check on the condition of the graft and see if all the threads of the graft are developing."

What a difference one question and answer can make. There is a world of difference between being eager to check in on the graft and looking for cancer with dread. I went to the bone marrow biopsy and asked for Rebeca who has had her hands on me before with the big needle. She does a great job. She sat and asked me how I was. She showed me a picture of her son. We chatted together like we were having a cup of tea except that I was under a warm blanket on the procedure table. Then she positioned me. "Am I in the best position?" I asked. "Yes," she said. "But, I want to be in a perfect position, like Greg Louganis entering the water without splash from the highdive and a score of 10," I explained. "Being in the perfect position is doing what I can to help." I felt like I was going to throw up. Kathy LeClair was there to hold my hand but Kathy wasn't making eye contact. She was looking over me to what Rebeca was doing. A nurse had looked me in the face once and said "lots of nurses can't be in the room when a bone marrow biopsy is happening, they can't take it." I wish that nurse hadn't gotten into my face and said that. I can still hear her and see her bending over me as I was laying in the hospital bed. I couldn't see behind me and knew that Kathy was doing it for both of us. I didn't want to see behind me. "Is it going to bother the procedure if I sing," I asked. "Not at all," replies Rebeca. So, I start to sing. Humming, making up songs and zoning into a place where music carried me. I was no patient. I was no guinea pig, I was no body being drilled, I was a music maker and I made it sweet. I could feel Rebeca tapping on the bone as she pumped the lidocane. "Just tell me if you feel anything sharp," she cautioned. "Nothing sharp," I sang. "Just like you are knocking on heaven's door." She laughed. I kept singing. And, when she said it was over, when the marrow was drawn, sucked up and out and into the dish, I sang Alleluia, Alleluia and I think they could have heard me in Tacoma. Rebeca laughing. "It's over, it's really over," I kept exclaiming. This holy moment enveloping us all.

Divine Intervention

2010-06-09T19:59:00.000-07:00

Would you believe that the first question on my list when meeting with the tan (my assigned color designation) team yesterday was "I want someone to check the original slides from my bone marrow biopsy. There are so many things are are being done differently here in Seattle. You knew to give me Mesna which protected my bladder through chemo. In Green Bay, my bladder became incontinent through treatment because no Mesna was given. You knew to give me Ursodiol to protect my liver. In Green Bay, I became jaundiced, my eyes turned yellow and the doctor confirmed drug induced liver damage because no Ursodiol was mentioned nor given. I heard that I had e-coli in the blood when the ambulance took me to Green Bay on Nov. 9. Maybe it was the blood infection that was really happening and this leukemia stuff was all a mistake. Even here at the University of Washington Hospital, there was a day when a nurse came in and said that one of my blood tests showed rods so a specialized antibiotic had to be started immediately and then later the same day, a different nurse came in and said the blood test showed no rods and the antibiotic was stopped. This is not denial, I just want to make sure that I really have or had Acute Lymphoblastic Leukemia."

Pat, the tan team nurse, didn't flinch. She went to the computer and pulled up my charts and started printing off the surgical pathology report. She handed it to me before I left. I carried the pages with me that afternoon to the bone marrow aspiration and biopsy center and asked for interpretation. Following is a portion of what I heard as the medical words were interpreted into lay language;

Just how sick were you? 80 to 90% of your bone marrow and the bone was so full of cancer that the cancer cells were freely circulating in your blood showing marked pancytopenia which means that the cancer had over taken the blood cell making capacity for red blood cells, white blood cells, platelets and the generation of the healthy blood you needed to survive. The e-coli and other infections probably came in because the immune system was so depressed by the abundance of cancer in your system. The diagnosis is Acute B-cell lymphoblastic leukemia.

"How were you diagnosed?" asked the biopsy tech.

I started feeling tired in summer. I quit my habit of getting up in the mornings while my kids were still sleeping to paddle. In September, I had a physical at the Washington Island Clinic with a blood test that told me my cholesterol was fine. Now I know they didn't run a CBC that would have given us the blood look. By October, I was laying down most of the day and having a very hard time getting up. I returned to the clinic and told them about my fatigue. The media were in a frenzy about H1N1. "It's viral," I was told. "There is nothing we can do. Gut it out." Woe to anyone who tells even an aging athlete to "gut it out." We do. I returned to the clinic twice more and called them too. It's viral, there is nothing we can do. Gut it out," I heard repeated. I did. When I flew to the American Canoe Association Annual Instructor training to present as the key note speaker, I had to lay down on the floor in the back of the auditorium with my head on my lap top until the introduction for me was made and it was my turn at the podium. I got up and gave my power point presentation, then retreated to my room. The next day, when it came time to go to the airport, I was too weak to leave the hotel. I held up in the hotel for two days before I had the energy to get on plane for home. On October 31, I catered a wedding at Bread & Water. Friends helped me. I was slugg-like. November 8, I went to the Sturgeon Bay, Door County Memorial Hospital and said "Now I'm short of breath." "You have been laying around too long, go take a walk," I was told by the clinician. I drove home and stopped at the grocery store on the way back on Island. The next day, Joe intervened and saved my life. He took me to the emergency room saying that all that night I had slept in a sub-human like ball making noises that no human should have to make. I remember getting in the car and covering myself with a coat. "I was just there at the hospital yesterday," I protested. At the emergency room door, I was put into a wheel chair. The attending was a paddler who had been at the Washington Island Canoe and Kayak Event in June. He was one of the marathon racers. He knew me by name and took a blood test. Upon arrival, my hemoglobin was 3.7. HCT which I believe is Hematocrit was 16.4, White blood cell count, 0.9 and platelets were 13. The regional oncologist from Green Bay just happened to be at the Door County Memorial Hospital that day and came in to see me. He made the order for an ambulance to take me to St. Vincent Hospital in Green Bay. At 7:00 p.m. that night, he came into my hospital room to take my first bone marrow biopsy. By Thursday, November 12, the results were back. Acute Lymphoblastic Leukemia. Induction chemotherapy started Friday, November 13.

Devotion 70, Day 30 Post Transplant

2010-06-09T19:23:00.000-07:00

Three threats in three days.

Fred told me that when his son Garth was thinking about giving up, Fred said; "You give up and I'm out of here." The threat worked. Garth hasn't given up.

When I got home from the hospital and started to hug my girls, Kathy knew that the girls were showing symptoms of not feeling well. She put her body between me and the girls and said; "You get close to these girls and I'm leaving." The threat worked. Though hurt, I washed my hands and took distance from my girls.

Rebeca told me about her mother who said to her step-father; "If you don't go to the doctor, I'm divorcing you." The threat worked. The step-dad went to the hospital and found he had stage IV lymphoma.

Having experiencing a threat and hearing stories of threats, all in a matter of a few days, I began to wonder. Are threats Godly?

Never will I leave you, never will I forsake you. So we may say with confidence the Lord is my helper. I will not be afraid. What can people do to me? -- Hebrews 3: 5,6

For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. Romans 8:38,39

There appears no threat of God in the crucifixion but when Jesus was crucified, one might think of God as absent, threatened or not threatened. From the sixth hour until the ninth hour darkness came over all the land. About the ninth hour Jesus cried out in a loud voice, "Eloi, Eloi, lama sabachthani?" which means, "My God, my God why have you forsaken me?" -- Matthew 27: 20 I believe Jesus fully human and fully divine. Perhaps when Jesus took the sins of the world upon himself he could not see the Divine, even within himself as he shouldered the weight of the world's sins. But, that does not mean that God turned away. Before death, Jesus embraced the divine. Jesus called out with a loud voice, "Father, into your hands, I commit my spirit." When he had said this, he breathed his last. -- Luke 23:46

Jung testifies God is present, bidden or not bidden. I haven't heard God say "I've leaving, I'm out of here, I'm divorcing you." I believe God works God's power with a perfect love devoid of threats. I hear God saying I am with you even until the end of the age. God is abiding.