5 weeks ago
Monday, December 10, 2012
Saturday, December 8, 2012
So, we are sitting at the dinner table. Not a spoonful of chicken noodles left. Kayla had three helpings and ate her vegetables as we lingered. Candle bright. Full-bellied cozy. "Kayla, I wrote a story about daddy being in the hospital. Would you like me to read it to you?" "No way," 10 year old Kayla replies without hesitation. "I don't want to go back there." Clear the dishes, no scraps to toss, turn on hot water, pour in suds and scrub.
October, 2012 -- Closing the kitchen at Bread & Water and returning to the writer's life is not an easy transition. I've spent my summer bellied to the commercial stove and stainless steel counter tops at the cafe. When the tourist season slowed, I believed I would write through fall and winter, cozy near the wood stove in my artist's studio. The tourist season has slowed. Now, I am face-to-face with my cancer journey which I would like to forget but . I have to to tell my story. Perhaps I worked so hard at Bread & Water and each new day to distance myself from the hospital bed and keep cancer at bay. Now, I am scared to revisit the trauma but I hope to emerge by spring with a complete manuscript and character forged by the sword of a pen in combat with timidity.
I close my eyes as the chaplain’s soothing voice invites me to become aware of my breathing. My shoulders began to relax with each exhale. I am fifty days post-transplant, lying in bed at what I call “top of the heap,” on the top floor of the seven stories Pete Gross House, care facility for bone marrow transplant patients and their families in Seattle, Washington. The chaplain’s narrative of reconciliation gently encourages me to embrace a sense of well-being. I expect to be lullabied into acceptance as prescribed by the transplant team protocol but my husband Joe delirious, tied in a hospital bed two thousand miles away.
The chaplain’s voice spoke what she believed could be sweet surrender words of God’s love. She painted a word picture suggesting a peaceful place for me to settle but what I heard were marching orders. Accepting God’s love mandates sharing God’s love with Joe. I know the Servant’s Song; “I will hold the Christ-light for you in the night-time of your fear. I will hold my hand out to you; speak the peace you long to hear.” For the past few weeks, I had boasted to my care givers; “I won’t let cancer be the death of me.” Now I knew that if I have a choice, I want to die while carrying the Christ light to the world, especially to my husband. The chaplain came to the end of the guided meditation by saying “that place you find yourself is your grief.” Though I did not have the strength to bolt upright in protest, I opened my eyes and testified; “I am not in my grief. I’m headed to Lansing, Michigan to be with the man I love.” The chaplain tried her best to help me stay where I am cared for but the guided meditation back-fired.
I was afraid to leave my medical support team. To visit Joe, I would have to fly in an airplane and breathe re-circulated cabin air through a mask. I would have to enter a hospital general ward with my infant immune system. A blood infection complicates my transplant concerns was a blood infection. A continuous drip of vancomycin was dispensed from a holster bottle strapped to my hip connected by tubes and mainlined into my heart by a Hickman double lumen. Airport security would be challenged with the fluids I was required to carry aboard. The transplant team considered the risks and voted “no travel.” But, during each daily exam I could no longer focus on my condition and pleaded for Joe’s needs. “Joe doesn’t know his name or where he is. For nine months we have endured cancer and transplant. While I receive care in big city hospitals Joe stayed home on 35-square mile Washington Island with our kids in school. Since my cancer, one doctor prescribed pills to help Joe sleep; another prescription targeted his depression and a third drug worked to relieve anxiety, now he is being injected with tranquillizers,” I explained. Joe saved my life. When people kept telling me that my fatigue was viral, Joe knew something was wrong with me and kept returning me to the hospital until I got my diagnosis and treatment for Acute Lymphoblastic Leukemia. A doctor told me I had only two days to live if Joe had not returned me to the hospital for another opinion. The transplant team quit trying to stop me, granted me a forty-eight hour pass and armed me with medical records and instructions to make it through airport security and connect with a transplant center in Ann Arbor should my condition require intervention while I was away. The nurse handed me a thermometer and told me to take readings twice daily. “If you reach 101 degrees, you are evacuated,” she cautioned. “We expect you back here on Monday morning for blood tests and clinic exam at 7 a.m.
On short notice, a volunteer from Seattle Cancer Care Alliance drove me to the Sea TAC Airport. I was put in a wheel chair for the trip to the gate. I am cancer bald with a carry-on including antibiotic cylinders and a weight of medications that I do not have the strength to lift. As I board the plane, I glance into the cockpit. A Delta Airlines pilot looks up from his clip board. “Seattle Cancer Care must trust you guys because they don’t let anyone out before 100 days. I am at day 57 from transplant and got a 48 hour pass to see my husband. He is delirious and tied in a hospital bed. I’m going to need a pair of those wings you give out for this flight.” The pilot did not refer me to the stewardess for a plastic souvenir. He reached to his cap and unpinned his gold bordered two-tone red triangle centered wings with a star on top and handed them to me. I held my new wings and cried as the stewardess helped find my seat. Tears collided in my breathing mask and made my glasses fog.
My friend Lauri met me at the airport in Detroit and drove me to Sparrow Hospital in Lansing. I wore my mask as she helped me find our way to Joe’s room. When we got to his door and looked in she backed away and left in a hurry. I could understand why she did not want to stay. Joe lay in a hospital bed. His hands tied, one on each side, feet tied to the foot of the bed. The white sheet was a wrinkled mass beneath his back and drape over the edge of the bed onto the floor. Joe’s hips and legs chafed against the dark rubber mattress but he would not lie still. Writhing did not loosen him. Struggling motion only made his case more pathetic. Coherent words were absent. His sounds of restrained thrashing were an audible cry for help.
“Hi Joe,” I said as I walked through the door. “I’ve come to be with you and I’m so glad to see you.” He made no sign that he heard my words but kept moving on the mattress like a lassoed snow angel with no off switch. I kept saying Joe’s name and calling to him, perhaps as much to convince myself as him that we knew one another and ourselves. Joe is the one I fell in love with while moving rocks that were too big to lift until we used a canvas sling and worked together. We grew in love when we adopted six inner city children. Could love overwhelm our circumstance? I know that love quelled my fear. I pulled a chair and sat on the side of his bed. Touching his head and hand seemed to make no difference to him as he continued manic movement. I took my bible from my bag and opened it to Psalm 139. As I read the Psalm a loud, I called out to Joe with each verse.
“O Lord, thou hast searched Joe and know Joe. Thou knowest Joe downsitting and Joe’s uprising, thou understandest Joe’s thought afar off. Thou compassest Joe’s path and Joe’s lying down, and art acquainted with all Joe’s ways.” I started singing the psalm with a melody that I made up as I went along. A spiritual care provider at the Ignacious Center in Seattle sang a psalm to me so I knew what to do for Joe. “For there is not a word in Joe’s tongue, but, lo, O Lord, thou knowest it altogether. Thou hast beset Joe behind and before, and laid thine hand upon Joe.”
A staff person at the hospital who was assigned to watch Joe so that he wouldn’t hurt himself had been sitting in a chair in the corner of the room. As I sang and held Joe’s hand, she pulled her chair to the other side of Joe’s bed, took her bible from her back pack, opened to the psalm I was singing, held Joe’s hand and began singing too. By the time we got to verse 24, “Search Joe, O God, and know Joe’s heart; try Joe, and know Joe’s thoughts,” Joe was asleep.
When Joe woke, another aid had taken the place of the one who shared scripture with us. She was trying to put a urinal to use for Joe. With his hands tied, he appeared to be batting her away. She fled the room to file a report that this patient was combative but I called the charge nurse and explained what I saw.
“Joe wants to do it himself. Untie his hand and give him the urinal,” I instructed. “We can’t do that,” the nurse explained, “until we get an order from the doctor.” I gloved my hand and took the urinal, put it in Joe’s hand and guided his hand into place.
I could not leave Joe’s room because of my condition but I did not want to. I knew my husband. He needed an advocate beside him who could translate. One staff person suggested that Joe is a candidate for a geriatric psych unit. I kept believing that Joe was recognizable and needed to be encouraged. “Joe is always building something, working with tools,” I explained to anyone who would listen. “We have to give him something to do.” By the next afternoon, Joe was untied, sitting in a chair with restraint, still not talking but ready to work with his hands. I assembled tooth brush, plastic cup, spittle tray, toothpaste tube, plastic spoon, shoe laces, comb and empty pill bottle on the tray table. He spent hours trying to “fix” the table and “build” with the lift mechanism.
When mealtime came, I cleared the construction site on his tray table and sat with my chair across from him. “Joe and I are on a date,” I told the meal server. Then I turned to Joe and recounted the story of our first date together at El Azteco, a Mexican restaurant we both enjoyed.
Rebecca Falls wrote; “One of the most valuable things we can do to heal one another is to listen to each other’s stories.” Joe wasn’t talking. I made him listen to his own story while I told it. I frequently interrupted the story to remind Joe to drink more fluids. I repeatedly pressed the cup of ice water and straw into his hand. After taking another long drink, he spoke for the first time since his hospitalization. “You’re cute but obnoxious,” he said with no rancor. I laughed. Joe is in there. This is the Joe I know, wanting to do things for himself.
The next day was July 4. My forty-eight hours was nearly over. Breakfast was delivered to Joe’s room with a small American Flag on a tooth pick in a bran muffin. Joe’s family gathered around including his brother who had flown in from Florida and two grown daughters who lived in the Lansing area. We made a family plan to re-locate Joe to a family farm for a rest cure with in-home medical care. The Sunday morning doctor making rounds came in while Joe was sitting in a chair receiving a hair and beard cut from his daughter Becky. Though Joe couldn’t tell the doctor what year it was or who was president, the doctor could see that Joe had improved. Tests confirmed that no stroke or other discernible illness had caused Joe’s breakdown. The strength of our family support and plan helped the doctor authorize Joe’s release. On my way to the airport to catch my flight, I got to accompany Joe to the farm and see where he would recuperate while I returned to Seattle and my transplant team.
When my flight took off that evening, I wore the wings that the pilot had given me. I could see fireworks out the window, a continent of fireworks from takeoff in Detroit to landing in Seattle and some in between. Independence Day will always remind me that love pays the price for our freedom. Loving one another is the spirit of God, the essential advocate for critical care.
Cancer did not kill my shadow. The black figure of me projected on wet sand as I walked at Newport State Park, Door County Peninsula. I painted a smile on the shadow by moving my arms up and down and watching my shadow "fly" along the beach. I pantomimed rabbit eats and skipped to watch my shadow dance. I had not checked in with my shadow since before cancer. A piece of me not dead. Surprise!
Wednesday, September 26, 2012
If I had my way, I would apply for a position at the Seattle Cancer Care Alliance so that I could work with patients and staff using my skill set as chaplain/ordained pastor/spiritual director and my context as Acute Lymphoblastic Leukemia patient and survivor of bone marrow transplant. Washington Island appears to be a very good place for our family at present. So, instead of moving to Seattle. I will move into my artist's studio (a.k.a. writing cell) and complete my "Gospel According to Cancer." God help me.
The Door County Advocate, September 8, 2012, headlines "Not Giving up. .....There has been a constant stream of visitors since Johnson's 13-year-old grandson Bo came home from Children's Hospital of Wisconsin in Milwaukee last week -- not because his leukemia had gone into remission but because doctors now say it cannot be beaten........" On my way to Light the Night Walk with the Leukemia/Lymphoma Society in Appleton, I stopped to share walk materials and my greeting with the Johnson family at Al Johnson's restaurant in Sister Bay -- the restaurant known for goats on the grass roof and a grandson who is not giving up.