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.