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.

Devotion 65, Day 35 Post Transplant

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

Pill Popper

June 15, I went to my weekly clinic appointment with tan team doctors. The top issue on my list was medications. I lined the bottles of medication I am taking on on the counter in examination room 5. Anti-viral, anti-fungal, anti-bacterial. What medications can we reduce? "You need all of them," I was told. "And, we're giving you a new one today -- Dapsone." I picked up the new drug at the pharmacy and read the print. Dapsone is a drug primarily used for those suffering from leprosy. The drug causes cancer in rats and mice, cautions a "definite but unusual complication of peripheral neuropathy (I don't need any more neuropathy!) and carries a host of other possible complications. Additional adverse reactions include: nausea, vomiting, abdominal pains, pancreatitis, vertigo, blurred vision, tinnitus, insomnia, fever, headache, psychosis, phototoxicity, pulmonary eosinophilia, tachycardia, albuminuria, the nephrotic syndrome, hypoalbuminemia without proteinuria, renal papillary necrosis, male infertility, drug-induced Lupus erythermatosus and an infectious mononucleosis like syndrome. The tan team is prescribing the medication for me because it can ward off a pneumonia that is partial to transplant patients. Dapsone is less likely to reduce blood counts than the Bactrim that has been an on-again, off again prescription I've been been ingesting since diagnosis. When I first arrived in Seattle, Dr. Collins told me "You have to take all the medications we give you." Well, I'm coming back at you. I'm going to make my tan team appointment this coming week and line up all those medications on the counter again and revisit the medications. Too many times I've heard, "Oh, if you read all the fine print of those prescriptions who wouldn't take anything" and "consider the alternative " and the latest encouragement "you'll be taking many of these drugs for six-months to a year following transplant." I want to consider all the alternatives. Hasn't anyone here heard "less is more." I'm seeking safety zones where I can let my body be. I hate being called a patient but in this case, I claim patient fatigue.

When Wheels Falling Off Can't Wait

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

Narrative:

"I have a surprise for you girls," I announced one day when Micala, Korrina and Kayla got back to our apartment from school. Micala's I'm-dragging-home-from-school-lugging -my-back-pack-and-just-want-to-sit-down mode switched to instant excitement and energy. "Do you mean that we get to go home early?" she said. She wasn't asking a question, she was voicing hope.

"I don't know about that right now but I have five tickets to the ballet," I answered, still in awe of the gift. Micala walked past me into the bedroom without any apparent interest in the dance. I talked with Korrina and Kayla about Ellen Walker, the Pacific Northwest Ballet and our date at the for Saturday. "We will all wear dresses," I said. "The ballet, the ballet, and take ballet baths before we get dressed and Kathy gets to go too." Korrina started twirling in the living room. Kayla jumped up and down with a big smile and giggles.

Saturday came. Mid morning, Korrina announced: "I'm not going if I have to wear a dress." "You have to wear a dress," I said. "I don't have a dress," she countered. "What about this one in the picture that was taken last week," I pointed to the photograph evidence. "I won't wear that dress," she reported. Instead of arguing, I went into my closet and came back with my offering. When I came to Seattle, I brought two skirts with me in my suitcase. Korrina could wear one. "Here is a shirt and blouse that Grandma Venita gave to me and I love wearing it and now you can wear it to the ballet," I said with enthusiasm. Korrina looked. "This is a cotton Adrienne Vittadini Sport shirt and shirt that will look beautiful on you and we will have three generations celebrated with you wearing grandma's clothes." She did not protest. I felt successful. Korrina accepted the skirt and personalized the outfit by rejecting the matching shirt and choosing a plain white blouse out of my closet.

At 12:45 a.m., I was gathering our party. "We need to go. Ellen said there would be crafts in the lobby of the McCaw Hall and mini-ballet lessons starting at 1:15. Ballet at 2:00. Micala emerged from her room in pants. "We are all wearing dresses," I said. "Then I'm not going." Micala said and walked back into her room. I followed. She retreated into the bathroom and locked the door. "Micala, what is happening? " I believe I repeated the "we are all wearing dresses, you have to wear a dress," more than I needed to but then I changed to say -- "You can wear anything you want, we're going to the ballet." Her reply through the locked bathroom door: "I'm not going."

I accompanied Kathy, Korrina and Kayla downstairs in the Pete Gross building but could not leave the building. I didn't have all my girls and my dream was coming unraveled. I asked them to wait and took the elevator back to the apartment. Micala had loosed herself from the bathroom and was in the living room on the sofa with her cell phone. "Micala, we're going to the ballet," I repeated. "I'm not going." She quickly walked past me, returned to the bathroom and locked the door.

For about fifteen minutes I could see nothing but my expectations. Going to the ballet was my dream. The tickets had been given. I had been in the hospital 35 days. Volunteers had taken our girls out and about and now it was my turn and Ellen had helped this to be my treat and I wanted to be with our girls. Before Saturday and during the planning for the day, I didn't even know if I would be able to go and had a person in mind to take my seat should I not be feeling well enough. I even asked the tan team doctors if I could go to the ballet given that I would be in a crowd of people. They had said "yes" and here I was ready to go and I was standing outside the locked bathroom door crying and pleading with Micala. Besides my disappointment, I felt responsible for the free ticket. Micala didn't seem to understand nor care what it meant to have a free ticket to the ballet. I left our apartment and went up and down the 6th floor hallway in the Pete Gross House knocking on doors, trying to find someone who could use the other ticket. No one answered at the doors where I knocked. I returned to our apartment to plead with Micala one more time. Korrina, Kayla, Kathy and I missed the crafts and mini-ballet lessons while I stood outside the locked door, knocked, kicked once and tried to reason. "I'm not going. I just want to go home," she repeated.

The time of me being away in the hospital, the missed communication, the heart-to-hearts that did not happen in the midst of treatment train wrecked with Micala's longing for home, missing her friends, dad and brothers. Micala has endured Seattle glued to her cell phone and texting. The "honey I'm home" expectation of mine without regard for what had happened at home and in the hearts of those at home while I was gone began to come real for me. "I'm not going. I just want to go home," Micala repeated. Saying "no" to the ballet was a tip of the ice berg.

I missed the holy moment. I wasn't ready to revise my expectation. I used my cell phone to call Beth, one of the volunteers who has a girlfriend repore with Micala, explained our stand-off and asked for help. "I don't want to talk to Beth," Micala said. Eventually, Micala unlocked the bathroom door long enough to take the cell phone and talk with her friend. I could hear Beth saying "Micala, you have to go, you are breaking your mom's heart."

Hearing (what sounded to me as) the guilt trip in Beth's words, helped me gain footing from the increasing emotional spiral. I had a choice and made one. I stopped begging and crying at a locked bathroom door, accepted Micala's decision and joined Korrina, Kayla and Kathy in the lobby. The cab had come and gone. We called another. Twenty minutes to curtain. Once in the cab, the driver was talking on a head set, I was reflecting upon what had happened. Fortunately, I looked up. The cab was snarled in Pike Place Market traffic. Ellen Walker from the ballet had said the Pete Gross House was close to McCaw Hall. "Please stop talking on the phone. Where are we going?" I asked him. He said the name of the hall and it wasn't McCaw. "What if you had gotten there at that other hall and dropped us off and we had paid and gotten out and you had driven away and the doors of the hall had been locked?" I asked. "The Pacific Northwest Ballet is at McCaw Hall near the Space Needle." He was taking us to the other concert theatre across town! Kathy was sitting in the front seat with the driver. "Kathy," I said from the back, "if we make curtain, this will be a miracle." "Five minutes," the driver promised. He diverted from town through what looked like a sea of red lights and promised to get us to McCaw Hall in time. He did. Dropped at the door. We were caught up in a sea of little girls in frilly dresses, little boys in suits, mom's in dresses, dad's with ties and of course, all manner of dress and blended family configuration headed through the glass doors. "Thank you so much for being here," I said to Korrina, Kayla and Kathy. We made our way to the ticket window and received our five tickets held under my name -- tickets in the orchestra! Kayla matched tickets to letters above the doors and located Section F. She led us toward the entrance. A woman with white gloves took our tickets heard me tell that we had an extra one and that Micala did not come. "You can just give that one away," she said. I was going to keep the ticket as some sort of martyred albatross of heart sick but she gave me permission to let it go. Five minutes to curtain. I had no time to return to the ticket booth for a give away. Then I saw an African American woman hustling toward the counter. "Kayla, take this ticket to her," I said. Kayla took the ticket on a run. In the giving and passing of that ticket, I emotionally let go of Micala not being with us. The woman was delighted with the ticket and couldn't believe her good fortune. During intermission, we would learn that her twelve-year-old daughter was dancing in Act III of the ballet. The proud mom shared part of her story and we got to meet her daughter, (same-age as Micala) after the performance. Now, the house bell rang signaling an imminent start to the ballet. The stragglers started to hurry. I hobbled and held onto Kayla's shoulder to make it safely down the slope toward the orchestra seats. I had a moment to peer into the orchestra before taking my seat. The cellist looked up from the pit and made eye contact. She smiled and I smiled. "Thank you for making music." If I could just have honored Micala as simply. Sounds of instruments tuning and preparing joined with the hundreds of audience voices settling into a hum within the auditorium. I leaned into the excitement. The challenges of being mom and transplant patient fell away. The red velvet curtain sparkling in a thousand places with brilliant, twinkling, tiny radiance of light. Then, in an instant, the lights dimmed and we began the reverent, expectant hush.

Micala's Poem

My Delightful Poem about Winter on the Island

by Micala, age 12, 6th grade, Washington Island

I am from the island of beauty

I am from the brightest star

I am from the snow world

I am so very far

I am from the glistening ice

I am from the snowy white trees

I am from the island of beauty

I am from the island of love

I am from Washington Island

The place that shines above.

Micala's poem reprinted with permission. Her poem was written at Hutch School in May, 2010, where Micala is attending classes while being with mom at the Seattle Cancer Care Alliance. Micala's poem was chosen for Imagination Into Ink:, the 2010 Writers in the Schools (WITS) Student Readings & Celebrations, a program of Seattle Arts & Lectures and the Seattle Public Library. Micala read her poem at a poetry reading and reception for young writers on Wednesday evening, May 26.

100% Donor Cells

Further results of the bone marrow biopsy came in yesterday with Chimerism testing showing 100% donor cells in my bone marrow. Hide nor hair or my cells were not detectable. The nurses and doctors are impressed. "Does this mean that my changes of Graft Vs. Host Disease are lessened?" I asked. "No," came the reply. We still have GVHD to look forward to in whatever form it shall manifest.

My lumbar puncture (spinal tap with chemo flushed into the spinal fluid surrounding brain) was scheduled for Friday, June 18 and now postponed until the following week because my blood counts are not "robust" enough. The methotrexate chemo pushed into the spinal fluid has a tendency to subdue blood counts so the plan is to wait until my counts are better before introducing more poison. O.K. by me. I hate lumbar punctures! Before they let me out of here, I understand that I will endure six of the lumbar punctures -- just for good measure. Hang in here Fons!

My white blood count is 1.72 thou/uL. Normal is 4.3-10.00 My platelet Count is 59 thou/uL. Normal is 150 - 400. Neutrophils is 0.78. Normal is 1.80 -7.00. the neutophil number is what is looked at to notice engraftment. Remember the 500 magic number. 500 being sign of engraftment. We are now at 780. Slow but so far sure.

Please continue us in prayer.