Devotion 71, Day 29 Post Transplant

There is a big mirror here in room 619, Seattle Cancer Care Alliance House and I get to see my bag of bones full length. I'm skinny and tired. More bent over than usual. I carry a measure of post traumatic stress remembering my time with mucositis when mucus gagged me and I was tethered to suction. I could pull ropes of mucus from my mouth. The braids had had to be broken and cut with salt water to disengage. The double lumen central line is harnessed on my chest with the infection-control gel pack see-through dressing. Scissors or pins, anything sharp is the new hot stove for me. A puncture to the central line is deadly. So, I wake up on this new day and feel some weight in this world. Not a jovial self.

Then, grace happens. In this little room on this new day, I am reminded that my arms, legs, truck, neck, head, fingers and toes are not lonely. I claim membership in one body much greater than me.

So in Christ we who are many form one body, each member belongs to the others. Romans 12:5

When I flew to Seattle and walked through the airport where gobs of people are on the move, I saw so many people in all manner of dress and motion. It seemed like half the world was in the Seattle/Tacoma Airport. They all looked healthy. Inside myself I said: "These people don't have Leukemia. I do." I felt isolated and contrasted. This morning, following my view in the mirror, I gained remembrance of rejoicing in the global community. Since there is one bread, we who are many are one body for we all partake of the one bread. I Corinthians 10:17

I like being one body with Carol, Liz, Susan W., Susan R. Marianne, Kathy, Claudia, Barb, Joan, Lenard, Joel, Bonnie, Connie, Enid, Lauri, Jin, Becky, Joe, Micala, Korrina, Kayla, Joshua, Shammond, Steven, Chris, Alison, Karen, Dorothy, Ric, Chuck, Billy, Stacie, Estelle, Steve, Bob, Lee and all God's children. Your infirmity is my infirmity. Your health is mine. God gives strength and Spirit to our bags of bones with perfect love. Bring this day on Lord. I am paddling. When I walk past the mirror again, I am smiling this time.

Devotion 72, Day 28 Post Transplant

When all my belongings were packed and emptied from the hospital room, before walking out past the rumpled blankets on the bed, the few empty pill cups and tissues on the floor, I stood at the window and kept repeating "Thank you Lord, thank you, Lord." The precious gift of transplant, my regeneration and rebirth happened in this cubicle. "Thank you Lord, thank you Lord."

And let the peace of Christ rule in your hearts to which indeed you were called in one body and be thankful. Let the word of Christ dwell in you richly teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs and with thankfulness in your hearts to God. And, whatever you do, do everything in the name of the Lord Jesus giving thanks go God. - Colossians 3:15-19

New Digs

Sign here. I can't remember what I signed but the nurse was giving me discharge papers and telling me I'm scheduled at the SCCA clinic tomorrow at 11:00 a.m. for labs and clinic appointment. The wheel chair sent to the hospital room was big enough to carry all my bags and parcels. Kathy pushed the chair. I walked carrying the paddle in the elevator and toward the door. Picked up a brown grocery sack of meds from the pharmacy. That bag looked big enough to fit a turkey, 10 pounds of potatoes, veg. and stuffing. Kathy and I caught the once-an-hour shuttle with a minute to spare. Heather Cheng, the fellow from 7 east was on the crowded afternoon shuttle and gave up her seat to me. Traffic noise, horns, bikers, walkers, blue sky, shops, bustle, cars, buses. Bridges, and I'm singing in side "I'm free." Let loose. Check into Seattle Cancer Care Alliance House on Pontius. A queen size bed without bed rails. A toaster. Desk. Window that I can open. Refrigerator. Bed side table with lamp. No P.A. system announcing and repeating when there is a code blue in room......

Kathy drops me off and goes on a food run to fill my fridg. She returns with a back pack of goodies and Kayla to visit. Hugs and hugs and hugs. Day 28 post transplant. And, make sure to take your temperature every four hours. Emergency phone number for the clinic written in bold numbers.

Moving Day

Doctor says I can go out of the hospital with the requirement that I am not alone tonight. "You being alone would break our precedent," he explained. "It has been a pleasure working with you. You are an extraordinary patient. You have saved your insurance company a lot of money not using any pain meds." We shake hands. Will have to make it a slumber party tonight. "Who will be staying with you tonight?" the nurse asks. "Minnie Mouse," I answer. I could never, never be an engineer. I live by vision, not details. When Kathy LeClair gets here to accompany me on the shuttle, we will talk.

Nurses working on paper work.

I'm packing the room. I've been at the University of Washington Hospital for over a month. My return Washington Island Ferry ticket is pasted on the bathroom mirror. I take it down. The brightly colored pop pom bordered Mother's Day card from Kayla comes off the wall. Kayla's finger painted rainbow rendition gets peeled off the wall and rolled. Cards and letters from friends pull off from the tape backing. Walls start looking bare. My kayak paddle comes in handy as a scoop to pry off the 100 day calendar taped at the top of the wall. Like a wide blade pizza spatula, the paddle blade breaks free each calendar sheet so that I grab hold, pull down, carefully remove the tape, smooth out the page, stack and pack. The "Midnight Rainbow" ordination banner is unhooked from the wall and folded. The prayer quilt from the Sunbonnet Sues unpinned from the curtain in the doorway. The stain glass with the hummingbird reminding me that "Prayer Changes Things" is wrapped. My books, papers, knitting, meds........ The room empties. The bags fill.

Outside the window, seven floors down, I see a young man laying in the grass relaxing. One day maybe that will be me on a blanket since I can not touch the earth for a year. Thinking outside, even catching a glimpse is doing me good. A crow lands on my window sill. The big bird pauses, surveys the landscape and dives.

A Woman With A Plan

Day 28 post transplant. Micala is still sick. Sore throat, mucus, head ache. Missing school. The administrator says that six or seven students are out with the same thing. The discharge orders have been written and waiting for me since this past Saturday. Doctor permitting, I can not wait any longer. I'm getting out of here. By phone, I rented a $69.00 a night hotel room at the Seattle Cancer Care Alliance House on Ponitus. Beats the high price astronomical nightly rate at University of Washington Hospital. Packing up today. When the doctor comes for rounds I'll be sitting on my suit case. Hope I get the green.

Devotion 73, Day 27 Post Transplant

My counts are going up. The staff refers to me as "Rock Star" and "champ." So what about others on 7 east? My neighbor has vomited all thirty days since I have arrived. I hear her distress through the wall and sometimes, I press my nurse button for her because when her nausea overtakes, I'm not sure if she has the presence of mind to get help. A friend on the other side of the wing is here with his wife. When I first met him, he was sitting on the shuttle crying saying that though this was hard to be here with his wife he could not be anywhere else. Today, he was looking more tired when I saw him in the hall and he wanted to talk. His wife has been in the hospital for two months. The transplant hasn't happened yet because bone marrow biopsies keep showing deadly Leukemia. We are praying for the results of today's bone marrow biopsy. There is a woman who lives at the Pete Gross House. Her daughter is a friend of Micala's at the Hutch School. She and her daughter have been in Seattle for 160 (and still counting) days because following her bone marrow transplant the Leukemia came back.

During my paddling adventures, I have made photographs of people in 33 different countries. Generally, people are delighted to have their photos taken. In my experience, whether in a dried river bed of Baja or a bustling Manaus market, when I point my camera and ask permission, a person stands straighter and smiles bigger. When I visited Russia twenty years ago, the response of people to my request for a photo was different. When I pointed my camera and asked to take a photo, people were vehemently opposed and covered their faces with scarves and turned away. People were afraid of the KGB. Afraid to be noticed. Standing out, singled out is dangerous.

God is not KGB. But, there are times when I am afraid. There are times when my heart dares to soar with joy again. Then, times when I want to stay low, off the radar. Maybe that is why one nurse always tucks me in and says "stay boring and uneventful tonight." She knows that the ones who do best are the uninteresting ones -- without complications.

In the hospital, the physical therapist leads me through balance exercises every day. Because of the neuropothy in my feet, I am unable to walk a straight line with heel to toe. I have told the PT that I want a laminated card for my wallet (like the card that hip replacement patients receive in order to get through airport security checks) to inform police that I am not drunk. If stopped and asked to walk a straight line, I can't. Where is the balance in all of this sick, get well soon, sicker, cancer-free, relapse, cancer survivor, lost the battle with cancer world?

God has not abandoned any of us on 7 east. I see evidence of so many present to alleviate and comfort human suffering. A woman comes in every day, bows her head, wipes my windows and floor, empties the baskets and dusts the sills. The attending doc comes in with a flurry of first and second year fellow students, PA and visitors peering at the numbers and the person in the bed.

Help me to find my way between the poles of shouting "look at me, I'm alive" and the tendency to stay quiet and un-noticed. May I rejoice in the mission statement of Christ found in Luke 4:18 - 19: The Spirit of the Lord is on me, because God has anointed me to preach good news to the poor. God has sent me to proclaim freedom for the prisoners and recovery of sight for the blind, to release the oppressed, to proclaim the year of the Lord's favor. May all of us prisoners on 7 east be released, our sight restored and the year of the Lord's favor be found in each new day.

Engraftment On The Nose

The laboratory tests came in on my blood this morning. My absolute neutrophils are 500! The magic number on the nose. Not one tiddly or twitch more or less. 500! Right on the money. Can you believe that?! The slow, steady climb is also extraordinary. So many cautioned me that this would be a one step forward two steps back process. Look at me -- Absolute neutrophils on 5/28 was 0.20. 5/29 0.24, 5/30 0.29, 5/31 0.28, 6/1 0.45, 6/2 0.50. This is amazing.

Also amazing is that my platelets are coming up on their own and without additional transfusion. My platelets were 12 yesterday and today they are 17. Still at high risk of bleed but my marrow is making blood. We are doing what we were born to do.

My white blood cells are in production. 5/28 0.57, 5/29 0.75, 5/30 0.94, 5/31 0.99, 6/1 1.27 and today, 6/2 1.38. My body is still unable to fight infection on its own but my fledgling immune system is starting to build.

Thanks be to God and Thank you for your prayers. We have a long way yet to go.