Monday, August 23, 2010

Stun Mode

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

Tuesday, August 17, 2010

Cloud by Day and Fire By Night

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

The Two Who Carried Us

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

Sweet 100+ Days and Not Been Kissed

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

Like a Baby Coming Ready or Not

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

Ready or Not

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

Sunday, August 15, 2010

Flowers That Came Anyway

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

For Pete's Sake

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

God's Perfect Timing

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

Saturday, August 14, 2010

Rock Wall

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


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

Friday, August 13, 2010

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

Divine Care Provider

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

Wednesday, August 11, 2010

Outside the Box

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

Lucky Days

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

Directing Traffic

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

Tuesday, August 10, 2010


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

Snow Fly

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

Ervin kid turns 16

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


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

Following Compline

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

Broke the Record

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


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

From Kayla

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

Sunbonnet Sues In Canoes

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

Saturday, August 7, 2010

You Can't Get There From Here

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

Parting Shot

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

Friday, August 6, 2010

Another Chance

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

Mr. Bean

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

In the World, Not Of It

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

Wednesday, August 4, 2010

Bok Choy

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

Homeward Bound

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

Ninety-Nine Sheep and the One Lost

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

Now We Are Six

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