Monday, June 28, 2010

Zuzu's Petals

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.

Sunday, June 20, 2010

For the Love of Spinach

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

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

Pill Popper

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.

Thursday, June 17, 2010

When Wheels Falling Off Can't Wait

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

"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

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.

Wednesday, June 16, 2010

100% Donor Cells

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.


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.


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.

Tuesday, June 15, 2010


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.

Monday, June 14, 2010

View From My Window

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

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

....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.

Friday, June 11, 2010

Devotion 67, Day 33 Post Transplant

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

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

Thursday, June 10, 2010

Devotion 69, Day 31 Post Transplant

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

Wednesday, June 9, 2010

Second Question for the Tan Team

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

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

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.

Twenty-five Years Ago, I Only Knew Enough To Name Them Beggars

Surrounded by the Atlantic Ocean and the Caribbean Sea is the island of Hispaniola and a town named Puerto Plata. When Verlen and I landed at this seaport town, we had already traveled nine thousand miles in our solo canoes from the Arctic Ocean en route to Cape Horn. I sought the cool peace of sanctuary and walked down a street paved in dirt and bordered by open sewer ditches to a stone building with the sign of a cross.
On the steps of the church were women holding babies, the lame, persons deformed and diseased. A man with bleeding sores on his leg propped his open palm on his bent knee. Small children stood with distended bellies, not playing but quiet, watching. All had eyes of longing. Each hand was outstretched in need. I walked between the people, through the open wooden doors, down the marble aisle, making my way to the altar where I knelt and thanked God for the progress we had made to this island.
The journey had not been easy. There had been landslides on the Mackenzie. Verlen had broken ribs near Ft. Simpson. We had been chased by drunken natives at Red Dog, frozen to the seats of our canoes in Kewenaw Bay, spooked by alligators in Florida and paddled nonstop for fifty hours on one of the island crossings in the Caribbean. There were ten thousand miles of water way still ahead. I breathed deeply. The furrow on my brow that was becoming a characteristic facial expression began to relax for I had escaped the noon day heat and felt that at this moment there was no threat.
When I stood to leave, a woman came behind me and touched my arm. When I turned toward her, I could see her hand open and waiting. My spirit was refreshed by a time of prayer. I reached into my pocket and gave her a coin.
When the money touched her palm she opened her mouth. In the dimly lit church, her jaws became like a cavern of anguish that seemed to swallow all remaining daylight. she had no teeth and her waging dark tongue vibrated with the sudden energy of a rallying cry. The woman was calling her friends. I had been singled out as one who would give. Immediately, a throng of beggars pressed against me, all wanting help. I drew back and escaped into the street, hurrying away, sure that I was not meant to provide for all these people.
At times, the expedition itself pressed like a throng of beggars. During the thirty-three month journey, the question was the same; how much could I give. I had answered that question when we began. I was going to give everything I had. Yet, every moment I was asked for more. -- Draft excerpt from More Challenge Than Comfort, a kayak journey from the Arctic to Cape Horn.

Monday, June 7, 2010


Kathy Garner, the PK (preacher's kid) from University United Methodist Church, our shepherd since Seattle week one took Kayla, Kathy LeClair and me to the University District Food Bank today. We had asked her to drive us to the grocery store. Kathy pulled into an alley at the edge of a near city-block big old church. In the corner of the building, ground floor was what looked like a hobbit door -- many people had to duck to make it through. Six or seven steps down led to a crowded sub-road way level bunker of food stuffs, shoppers and volunteers.
Greeted by a woman in an apron, I introduced myself and our reference. "I'm a bone marrow transplant patient living at the Pete Gross House. Our friend Kathy Garner from University United Methodist Church brought us here to shop." I explained. "Oh, our good friends at United Methodist," the woman responded. As first timers we were asked to sign in. I soon learned that it was not necessary to have an introduction, reason nor reference. The University District Food Bank is open to anyone who needs food residing in close proximity zip codes to the pantry.
A shopping helper came alongside to assist us. She held a laminated card that informed us how many points we could "spend" in each of the food categories such as diary, protein and vegetables. Our capacity was based on the number of people in our family. Kayla pushed the cart. When we got to the meat bin, we looked inside and a man at that station said "Just a moment, I have something for you." He went into the cooler and returned with a nine pound spiral ham and set it into our cart. Rows of bread stuffs were available for us to choose from. Twelve potatoes and six oranges were allocated to our family number of five.
Volunteers all. Volunteers unloading, stocking, checking out, shopping assist. We were in a basement of donated food with a community of volunteers set upon helping. The abundance of the hand out, the joyful pantry of people helping people fed my soul as much as any of the food stuff boxed, bagged and placed in Kathy Garner's car for our benefit. I do not know that we will become regulars at the University District Food Bank but today, I received our gift with gratitude. My spirit lifted and filled with what the world can be.

Lake Argentina

A low, rocky point extended into Lake Argentina. Pushed by 25 knot wind, Verlen and I paddled our catameraned canoes along the shore scouting for a camp spot. Sharp boulders blocked our attempts at landing.
"We'll go around the point," Verlen yelled. "As we enter the bay we'll find a place for sure."
I paddled steadily, unaware of our danger. We had been wind bound on this glacial fed lake for four days and only this evening had ventured out. Alejandro had shoved my canoe from the beach.
"The wind doesn't get any better than this does it?" I asked.
"No," he replied, sounding as if he was sorry about it. "It all depends on when you are ready to go."
We were learning to stretch our limits. A windy day like this back home in Michigan would mean no paddling. Here in Patagonia, a windy day like this meant as good a day for paddling as we were likely to get.
At eleven p.m., there was still daylight, but the color of the lake had darkened to charcoal. The wind that had been pushing at our backs and scooting our canoes along the edge of the point suddenly increased and became so strong that when we reached the point, we couldn't turn into the wind and head for shore. The wind came down from the mountains, seeming to gain speed as it tunneled toward us. As we reached the end of the point, we were relieved, so sure that the worst was over. We were fighting as to who would hold the camera and then as we rounded the point, we saw that the land had been sheltering us and that the wind was crazy and the waves were tunneling because of their steepness. The worst of the waves were at the point because of the rocks. It was gruesome. The worst water we had encountered on the expedition. We were blown past the point and driven forcefully from shore. Waves climbed over our sterns and ice water spray hit my face until my cheeks were numb. I was warmer than Verlen. I had on the neoprene gloves and survival suit. Verlen was only in a Helly Hansen rain coat.
It was nearly four miles from the point across the bay to the far shore. We had no other choice. In minutes, the lake turned into a froth of white. waves climbed like angry fists toward the sky. The wind picked up water from the lake and flung it into the air, swirling into spouting tornado shapes. All of our efforts were directed toward maneuvering the boats to quarter the waves and avoid being hit broadside as we navigated for shore.
There had been no warning nor time to make weather judgements. Skill, technique, strategy and the seaworthiness of our boats were not enough to save us. I was terrified as the waves engulfed my canoe. We were trapped and mauled in the storm.
I kept paddling, feeling each wave lift my boat and threaten to capsize me. Then another wave would come with greater force and another with no stopping. Verlen was quiet as he always was when the going got rough. There was no point in talking to him and watching the waves only gave me a sure feeling that we would die. There were no fishing boats to save us. No house on shore to signal. If we did capsize, the cold lake water would render us hypodermic within minutes. There was no time to panic. We had to work at staying alive and upright. we had to hang on and keep looking toward the safety of shore and keeping believing that it was getting closer.
I began to sing "How Greet Though Art," as if it were my prayer. At first I could not hear my voice above the roaring wind. Then I sang louder and louder and my prayer became an answer. A calm strength that defied the storm took over inside me. In singing about God's greatness, I realized that God is bigger than a wild sea, bigger than the storm and bigger than our present danger. I felt a strength and assurance that allowed me to continue paddling toward shore. In spite of the turbulence, our canoes did not swamp or flip.
We spent more than an hour blown by the wind. Our canoes took on water and the wind raged even stronger. Still singing, my canoe touched the dry ground of the shore that had seemed to impossible to reach. I clamored ashore near the mouth of the River Centinela. Because we were close to the delta system of the river and on the inside of a bay, the shore was an expanse of mud and shallow water. Verlen got out to wade, towing the canoes toward the beach with waves cresting over our sterns. -- excerpt from draft of More Challenge Than Comfort, a book about my canoe expedition from the Arctic Ocean to Cape Horn.

Pray for the calm strength in treatment.

Why It Matters

Fred is 78 years old. He is with his son who has survived Parkinson's Disease, testicular cancer and now transplant. On day 80 of transplant, the marrow shows cancer again. Fred sat with his cane and cried. "I've been with him a year," he said. "But my son won't let me forget that I missed five days. My hernia blew out and I had to have surgery. He just won't let me forget those five days," Fred said with a smile. "They told us not to leave while he is having chemo but we took Saturday off and I took him to the lake shore. You have to break the rules once in a while."

Today, I saw a woman I recognized from the Finding Meaning Through Cancer workshop I attended in April. She walked in the SCCA front door standing tall with her cane more companion than crutch, thick hair stubble and lipstick. She had a port in her skull to allow chemo injections into the spinal fluid without the need of lumbar puncture. With her fuzz the port became almost invisible like grass grown over it. "You look great," I said in greeting. Her face looked so vibrant. "Well, my remission was short lived," she explained. "Cancer is back. I'm going to Hawaii with my kids next week if I can get on the plane. Then we'll return and get on with another protocol." I started crying for her and me. I held onto her arm in the lobby of SCCA and she was crying now too. "Thank you," she said and hugged me.

I got to the shuttle full blown weeping. The driver had to help me up the steps of the bus into my seat. "Is anyone with you," asked another passenger. "My care provider is at the Pete Gross House. That's where I'm going," I explained. "I'll be o.k." "There is a social worker you can talk with," he mentioned. "I know." What got me today is that all the work, all the effort, all the "we can cope" and "we can get through this," may just not be good enough. I came into the apartment crying. Kathy came in and sat with me. Waiting until I could speak. I told her the people I had seen and the stories I had heard. It felt as if I emotionally down-shifted to another gear today to handle rougher grade. "I'm not going to let cancer kill me," I reported. "Drowning seems more fitting." Kathy got quiet. "I'm not talking suicide and I'm not a danger to myself nor others but after all of this, I can not let this disease take me.

Bianca and her mom have been in Seattle for 170 days. The mother's cancer came back following transplant. The doctors administered more chemo which took her blood counts so low that she is submitting to blood transfusions almost daily to keep her functioning. "Pray for me," she says with tears in her eyes.

We are talking serious here. Kathy LeClair dubs the place a Chamber of Horrors. I call it a glimpse of the valley of the shadow of death.

I believe our lives depend upon your prayers.

Saturday, June 5, 2010

Up Close and Personal With God

When I paddled from the Arctic Ocean to Cape Horn, I celebrated in the embrace of God's glorious creation in the outdoor world. Do you know how to tell what direction the wind is blowing? I learned to watch for the signs like a flag untwisting and furled or the bend of a branch. Throughout the 21,000 mile canoe adventure, I experienced the "All Things Are Possible With God," part of Holy. I lived a victory of time, distance and dreams come true. The Two Continent Canoe Expedition was a vision and with that vision I could not perish. Scripture came true as I paddled. I had printed love one another on the bow of my canoe but I didn't learn that verse from staring at the printed message 16 million paddle strokes. I learned to love one another because people loved me throughout the western hemisphere. I John 4:19 came to life. We love because God first loved us." I learned to love because people in 23 countries loved me -- adopted me like family, took me into their homes and helped me along my way. On Lake Argentina, I experienced the power of God when 100 mph winds roiled the lake into ice churning pistons with my boat caught between exploding, fluid gears. Calming myself by singing "How Great Thou Art," believing the power of God greater than the power of the storm, I paddled safely to shore.

This journey through transplant is a deeper relationship with God. It scares me at times because in the quiet, I feel as if I am being prepared to meet my maker face to face. When the world and distractions quit, God can get intensely up close and personal.

In the sweet territory of silence we touch the mystery. It's the place of reflection and contemplation, and it's the place where we can connect with the deep knowing, to the deep wisdom way. -- Jean Shinoda Bolen

I'm not sure I agree with Jean. The sweet territory of silence can be imprisoning when imposed by cancer. I don't think of God as mystery. God is revelatory, wanting to be known and in relationship. Reflection and contemplation doesn't just happen in silence. It happens for me in a moment when I hear the giggle of my child in the crowd and see her sweet face making eye contact and looking to see if I notice. Connect with the deep knowing, to the deep wisdom way..... Jean should have been at our dinner table when Joshua was kicking at Korrina under the table. Shammond was saying he wasn't hungry, Steven had a cell phone call and learned enough to say "I'll call you back." What food we had was shared and ample. Mom filled the plates and Micala delivered. "I need a fork," was heard from the end of the table. "I dropped by spoon," was heard from the opposite quarter. "Joshua hit me with his spoon," was heard too. We would turn out the lights and the candle be lit. For moments of glorious silence we would sit together and no one spoke. Then, one by one, we passed the candle. The person holding the light got to say what they were thankful for that day. And the candle passed until all eight of us plus guests sitting with us as family saw the glow of candle light in the faces of each other. The lights snapped on and the eating begun. Reflection and contemplation, the deep knowing, the deep wisdom way happens at the table in our house. May the wisdom way emerge as the open road out of here.

Fragile Yet Tough as Nails

There is something about being ushered into a cubicle and the curtains drawn and the woman setting out the vials, the alcohol preps and asking me to spell my name and confirm my birth date. How much more intimate can you get? I open my shirt and hand over my central line with the stitches still showing under the see through patch and the impression of the line that threads through my juggler running into my neck. She draws my bood, getting what she needs to fill the clinic order. It is Saturday morning and there is no hustle nor bustle to distract the process. I start to cry. Glad the tears are coming because they have been stopped up for a while. The chapel is locked in the Saturday building. I ask the guard to open it. Then I ask for a box of tissues. The guard delivers. "I'm o.k. Not a danger to myself nor others, I just need to release." "I understand," she says. Good. She has a wad of keys and pager but no gun. Glad she didn't lock me in when she left. I sit in the quiet with the irredescient blue tiles set from floor to ceiling against the focal wall. A crystal bowl of smooth colored rocks sits near the prayer book on the gathering table. Dimmed lights - the safe place to let down. No one else can hear so I give sound and salty liquid to emotional exhaustion.

I am the utter poverty of God. I am God's emptiness, littleness, nothingness, lostness. When this is understood, my life in God's freedom, the self-emptying of God in me, is the fullness of grace. -- Thomas Merton

When the tears quit, I walk slowly and take the elevator to the sixth floor to raid the nourishment refrigerator in the clinic. Grape juice, cheese stick and crackers. While I am walking down the hall of the clinic, I think about my dad, died March 31, 2009. For the first time, I am grateful. Dad would never have wanted to see me this way. It would have hurt him so bad. And, my mother's journey with Alzheimer's. In ways, she is insulated from the hurts of her children. I find a seat for me and my snacks without worrying about where I have to go or what I have to do knowing that I have no other choice right now than to sit down and replenish before I'm able to take one more step. I watch the view on Lake Union until my body gains the strength to rise. Buy a newspaper and call a cab to return to the Seattle Cancer Care Alliance House. Returning to life. Legs wobbling but without need of cane. I'm moving slow but I'm moving.

Perfect Storm

So there is this amazing moment this morning when the girls woke up. I had come in the night before under the cover of darkness when they were asleep. I had discovered their gifts to me throughout the apartment including them. This morning, I had to greet them. I wanted to touch them and hug them. Kathy LeClaire got her body between us. "Valerie, you have got to protect yourself and not get too close." There was a hot moments when me being mom and Kathy being consummate care giver came to a face-off. For all our best laid plans of how this is all going to work, I never thought out what it would mean when I saw my girls and had to hug. So, I sang to them, across the room and got into the cab for labs. The cab driver was coughing. So what is a person with no immune system supposed to do? Years ago, transplant patients were literally kept in a bubble. Nurses and doctors weren't even allowed to touch them. We will see what kind of a bubble I can live into today.

How Are The Girls?

Micala, Korrina and Kayla were eager to accompany mom to Seattle. They accepted my invitation with excitement. There was never a word of "I don't want to go, " or "I don't think so."

The make it or break it is the support system built for the girls in Seattle so I started with phone calls before arrival and hit the ground running with face-to-face contact once we got to Washington and before I was admitted to the hospital.

Micala, Korrina and Kayla attend Hutch School every day from 8:30 - 2:00. Hutch is part of the Seattle School System and is built adjoining the Pete Gross House. Students at the school are dealing with cancer themselves or have a parent or family member in treatment. Hutch is finished with classes on June 15 and begins the daily Hutch Summer Camp program June 28. Gilda's Club Camp Sparkle will pick up the slack between the Hutch conclusion of classes and the Hutch Summer Camp program start.

Critical to the whole picture and totally unanticipated as we waded into this is Kathy LeClaire. Kathy is from Two Rivers, Wisconsin. She volunteered as my care provider for one month. When she arrived, she opened her heart to our three girls and shepherds them dailey. All the while I've been in the hospital, Kathy made it possible for the girls to remain in Seattle. She took care of them. There were many nights when I heard they vacated their room to climb into bed with Kathy. She made room. Rather than return home on June 1 as planned, Kathy has given us all the gift of her ministry presence for the duration. This morning, when I walked into the living room from my bedroom, Kathy was on her knees by her bedside beginning her morning in prayer.

Through the University Presbyterian Church, the girls have been assigned a volunteer mother and daughter team -- Debbie and Megan -- through a program called Side-By-Side. Trained, vetted, and fully funded for all expenses, Debbie and Megan pick up the girls once a week for six - eight hours. Debbie and Megan call themselves experts in fun. Zoo, the latest Shierk movie, shopping, dinner out. A weekly treat.

Through the Seattle Cancer Care Alliance, the girls have been assigned a volunteer named Brittany who comes to be with the girls 6 - 8 hours a week. Brittany can't be alone with the girls but with Kathy LeClair to accompany there have been weekly outings. Today they are at Gilda's Club for teen cooking and Small Talk.

Volunteer Beth picks the girls up for shopping and Wednesday night dinner at Beth's country club. Beth's friend Mark frequently takes photos and is creating an album for the girls and me.

Volunteer and paid helper, Kathy Garner is a P.K. from University United Methodist Church. She has the girls kayaking, playing at the park, regular visits to the library and church.

No wonder there are days when the girls want to sleep in and roll over to no itinerary.

When I arrived at the Pete Gross apartment last night it was after 10:00 and the girls were asleep. Every square inch of the front door of our apartment was covered in a Welcome Home Mom sign that Beth helped them construct. I touched the word "mom" with my fingers before knocking. Inside, Kathy was waiting to give me a hug. The girls had hung "welcome home" signs on the wall and put yellow, silk flowers in my room and envelops on the window sill from Micala and Kayla addressed to mom.

This morning when I woke, Micala came into my room and shared what is going on in her life. Oh how sweet to be a mom.

When I went for labs this morning, I sat in the chapel for a while and came across Kayla's handwriting in the prayer book:

Dear Lord anser my pray help momy hell her amen love kayla age 7

Korrina's was in the book too:

Dear Lord and Christ help my mom get better and fight cancer and live please, please help my mom fight out of cancer please please hep her. amen. love Korrina age 10

The girls have left dad, friends, Island home, Washington Island School and life as we knew it to be here with me. They uprooted and made a home on the west coast to be with mom and to be together, just the girls.

Years ago, when I adopted the girls, an adoption trainer told me that one of the best things I can give my adopted children is to make grief normative. She explained that the loss of birth mom is ripping and shattering of all life that the child knows. During separation and loss the child hears messages of "You are in a good home now. This is so much better than where you were and aren't we glad." The foster and adopted child usually doesn't find much safe space to grieve.

When coming to Seattle, I figured that live or die, the girls didn't need another mom to fall off the edge of the earth. Instead of separating, we could come closer together, face challenge and grow as family. When they heard my invitation, Micala, Korrina and Kayla threw their arms around each other, started packing their bags and called it adventure.

Micala wants to be home on Washington Island for her birthday August 17. Let's make it happen. Boost, boost, boost this fledgling immune system.

Friday, June 4, 2010

Working the Plan to Legalize

Heather Cheng wrote the discharge papers on Saturday, but I remained in the hospital until Thursday before getting out because there was sickness in our apartment. And, when I got out, I bent the rules but not having a care provider with me. I can not abide running foul. Betrayal of the team is what I call it. My relationship with the team was mutual respect until today when I disclosed to the doc that I'm sleeping with Mini Mouse. Blatantly disregarding all sense and doctor's orders by being alone, without care giver. Unacceptable. Had to change.
Micala, Korrina and Kayla are still not 100% feeling great. One doctor said that when a person shows symptoms there is less "shedding" of infection than before a person develops symptoms. We are learning so much more here than I ever needed to know. I'm keeping the room at the Seattle Cancer Care Alliance House through the weekend. Why sit in the apartment where germs circulate in a two bedroom concrete can hanging out Saturday and Sunday? I wait until they have eaten dinner, tonight, at 10:00 p.m., I take a cab from my room at the Seattle Cancer Care Alliance to the Pete Gross House and buzz in to our apartment. Go straight to my room and shut the door. No food consumption, no sitting on the couch eating pop corn giggling. Just sleep in my room so Kathy can come in a couple of times during the night and make sure I am still breathing. I get up tomorrow morning and vacate after Kathy gets a good look at the whites of my eyes and my temperature reads normal. Clinic labs by 9:30 and back to my cloister den at the SCCA House. Kathy spent the evening Cloroxing light switches, door knobs and every reachable surface in prep. for my arrival at the Pete Gross House. Such is the life of a person exploring life and assessing risks with no immune system. Why would we think that having a care giver at night is any more important than being with a care giver in day light? Sweet dreams.

Visit With The Tan Team

Today, following labs at 11:30 a.m., Kathy and I went to my first clinic visit post transplant. There was a chair in the room and the table. I asked Kathy to sit on the table and give me the chair. She laughed and told me she would. The doctor can in and asked "Who is the patient?" I stood up to face him. "There are no patients here," I said. "I'm the transplantee." We covered all the bases, from discussing emotional exhaustion to a transplant crop of never before experienced until transplant hemorrhoids. I explained that I am tired and wobbly when I walk but most of what I am experiencing is this 24 hour transition post 35+ day hospital stay to life on the outside including a change of life style, including diet. I am out from hospital food and responsible for myself.
"Usually we have a bone marrow biopsy on Day 28 post transplant but we are going to wait until next week on you," the doctor said. Great idea. I have no emotional strength right now to submit to a big needle into the bone aspiration. Grace for sure.
"So, what can we expect now?" I ask. "We are going to be on the look-out for signs of GVHD, graft vs. host disease and symptoms including; temperature over 100.9, or chills with or without fever, changes in the appearance of the central line site, such as redness, swelling, pain or drainage. Changes in the color or consistency of stool or urine. Appearance of a rash or itching on skin. New cough or shortness of breath. Nausea, vomiting, or diarrhea. Inability to take perscribed medication, new or different pain, any bleeding or bruising, headache or dizziness, change in ability to think clearly. These symptoms are considered 911 emergency for post transplant patients.
The conversation was so helpful and personable that I admitted to sleeping with Minnie Mouse last night. That means that while the discharging doctor said I had to have a care provider with me through the night, I went solo. Kathy had rested with the girls at the Pete Gross House and called me every three hours but she wasn't physically with me at the SCCA House over night. Doctor Peter Johnson got serious. "You have got to have a care provider with you," he admonished. "Post transplant there could be times when you get too ill, too fast to respond on your own. If your care provider finds you unresponsive she would call 911 when you may not be able to. Becoming unresponsive can happen in a couple of hours." "I hear you," I said. Kathy and I will still have to work out what to do tonight. I'm enjoying my quiet room. Solitude is good. More people in here, more bugs. But, we have come too far to get stupid now. And, the doctors are adament that a care provider is crucial, required and not an add on.
"You are doing great," the doctor said. "I am really glad to meet you. I heard about you having the hospital bed taken out of your room. I wish we could get more patients to do that. It is incredible that you have come out of the hospital without I.V. fluids. You should pat yourself on the back. Your absolute neutrophils have dropped below 500 to 470 but that is not unusual, counts of engraftment can go forward or back. You are doing great. You look great and you are one remarkable patient 29 days post transplant."
"Pat yourself on the back" is a doctor's order I need to explore.

By the time I we finished with the appointments, I was almost too tired to eat but Kathy and I stopped at the 2nd floor Bristo for lunch together. "Kathy, why am I making it through this? It is not my constitution, that makes this transplant successful. " "God loves you a lot," she said. "God loves us all," I motioned. "Our position has nothing to do with anything that I've done. Patting myself on the back is not the appropriate response." I thought for a while. "What is it Kathy?" I kept chewing and got so tired that I had to rest my head in my hands and decide to take the rest of lunch home in a take-out so that I could go back to the SCCA House and nap. Then, I lifted my head and looked Kathy in the eyes. "It has got to be prayer. So many people are praying me through this. The pray is the sway."

Life In The Flesh

Kathy LeClair came by this morning with a clean pair of my jeans and shirt. She arrived to accompany me to Seattle Cancer Care Alliance clinic appointments. Dear One. We held hands. I leaned on her. We rode the shuttle together. First stop was blood draw from my central line on the first floor at the clinic.
I sat waiting, leafing through a colorful Oprah Magazine with a feature headline about reducing clutter. The cover photo was Oprah caressing an arm load of shoes sitting in what looked like a closet filled to the brim with clothes and more shoes.
My name was called. I wanted to put the magazine in my bag and read more later but realized my initial response was just one more indication that I was re-entering life. I didn't need to steal a magazine to catch up and fill into the mainstream.
The woman who called my name greeted me when I wobbled past the counter and stood in front of her. "Would you like to be in isolation," she asked. "No, I'm wearing a mask for protection because I'm 29 days post transplant and don't have an immune system." "Would you like me to wear one?" she asked. "No, you are o.k.," I said. Kara is blond with her hair pulled up and pinned at the back of her head. She has a pierced eye brow, pierced nose and ears. There is a colorful tattoo on the back of her neck. She welcomed me into the blood draw bay and pulled the curtains for my privacy. I unbuttoned my blouse to reveal the central line. As she worked, scrubbing with alcohol prep, flushing each lumen with saline, and drawing for labs, I noticed the tattoo on her left wrist. She has two little infant feet with ten toes (like the shape of little feet that are inked and impressed on record upon birth) penned into her skin above scrolls. I saw the word Jeremiah. Well, that is pretty neat, I thought. I had heard of guys who get the names of girls friends or wives tattooed on a body and then break up or get a divorce. A mom tattooing a child on the body would never need be reversible.
She is so gentle with me. She took her time, cleaned the line from chest entry to draw point. She followed every procedure that I've become so familiar with.
"Your child," I said pointing to the little feet.
"I had a miscarriage," she explained. "When the due date came, I had to do something so I got this tattoo. I didn't know it would be this big."
She quoted the scripture reference indelible beneath the infant feet from Jeremiah 29:11. For I know the plans I have for you declares the Lord. Plans to prosper you and not to harm you, plans to give you a hope and future. Everything happens for a reason. This helped me to get through it."
This gentle and courageous woman made meaning with grief work incarnate. On the skin of her body in which the child was created, on her inside wrist above her palm which she shows to me open in service to me and others, she memorialized her child and reshapes her loss into the hope and future of God's promise.
As Kara captured and capsuled my blood, I wondered; how is my body a testament? Oprah has her shoes.