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.
