Devotion 65, Day 35 Post Transplant

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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.

Coppelia

A "deliver to current resident" flyer came through our mail box at the Pete Gross House for the Pacific Northwest Ballet. A full color graphic of dancer in costume on point with arms, wrists and fingers in grace upon expressive-grace position arrested me. The ballet. How wonderful if we could go to the ballet. I asked every one of our volunteers and the volunteer desk at the SCCA where tickets and passes are usually found. No one knew how to get tickets nor if there were tickets available through SCCA channels. The on-line site for PNB said that to make a request for donated tickets one needed to be a ballet subscriber or member. No one I spoke with at the SCCA house and through my contacts is a member. The idea of the ballet wouldn't let me loose. I called the business office at the ballet and left a message on the answering machine of Ellen Walker.
A few days later, Kathy and I were making one of our regular shuttle trips to the clinic lab. "I forgot my phone," I said before the shuttle took off. "I'll go get it," Kathy offered. Eddie, the driver said we had seven minutes before take-off so Kathy re-entered the building and went for the phone. When she came back she was talking on the phone. "Just a minute, I'll let you talk with Valerie," Kathy said as she handed the phone to me. Ellen Walker was calling.
"Of course, you will have tickets and not just for your girls, we want you to come and I've just spoken with your care giver and we will provide a ticket for her too," said Ellen. Oh my. Amazing how a day can change. Abundance heaped on, gracious, amazing, extravagant gift. I felt filled, wrapped and lifted in the joy of that moment hearing Ellen's voice, receiving the gift and being amazed. The ballet, the ballet!
Kathy just looked at me. "Now, how did you do that?" she asked. "I got this vision from looking at the flyer and I just started asking and when someone listened, even the answering machine, I just told the truth, Ellen Walker heard me and gave the tickets. It comes to this: God moved," I said. Still beaming.

Ridges

The Ridges Sanctuary in Bailey's Harbor, Door County, Wisconsin, is a protected area where water and wind action have formed berms of sand parallel to shore. Within walking distance from Lake Michigan, one can stroll the ancient beach boundary at a distance from the present shoreline. Away from the surface water of the lake, the sand mounds have been in place for so long that the continued geological movement of gentle hill upon hill of sand sand is muted by emerging ferns, trees, ground vines and stubble growing through the surface.

Trees have ridges too but we call them rings. Examining the rings on a stump reveals the story of the tree. There is a ring for every year of growth. Some tree readers are so good at interpreting the story through the rings that it is possible to determine if a particular year during the life of the tree was drought or water abundant from the position of one ring in relation to the next.

My fingernails have ridges. Deep tracks across the surface of the nail as if a window casing had come down hard without cracking the nail nor leaving a bruise but indenting with indeliable impression. Each depression is a clear, 1/4" track running across the nail, most distinguishable on the thumbs. These ridge lines are caused and consequence of chemo. Even though I have been subjected to chemo upon chemo, I still can not imagine a chemical so toxic that even the nail bed scars. A cancer reader could tell part of my story from looking at my thumb. I watch my nail growing and the ridge line moving with the growing nail closer to the tip. One day the ridges in my nails will be ancient history.