Post traumatic

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

Abundance

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

Aroma

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

Sacrament

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

Writing

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

Tears in Produce

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

The Paddle

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

Driving By

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

Bowl

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

The Ones Doing Heavy Lifting

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

Anniversary

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

Recovery

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

What the Market Will Bear

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

What Makes a Difference

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

The Alternative

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

Mind Over Matter

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

After Shocks

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

Angel Unaware

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

Anniversary

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

Doesn't Get Any Better

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

Dressed and Practiced for the Scandinavian Fest 2009

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

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

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

More Than Imagine

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

Writing

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

Leaning on Everlasting Arms

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

Dust Settles

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

Four to Four

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

Spagetti Man

Shammond Martin Ervin at Bread & Water

Portage

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

Invitation

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

Three Graces

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

Stun Mode

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

Cloud by Day and Fire By Night

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.

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.

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.

Quiet

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.

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.

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.

Mentors

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.

Perspective

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.

Compline

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.

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.

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?

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!

Jump Happens

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

Sampling

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

Sharing my secret

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

Devotion 61, Day 39 Post Transplant

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

Devotion 62, Day 38 Post Transplant

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

Devotion 63, Day 37 Post Transplant

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

Devotion 64, Day 36 Post Transplant

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

Hoop Dream

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

No Chicken

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

Wings

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

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

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

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

Zuzu's Petals

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

For the Love of Spinach

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.