Monday, May 31, 2010

Start Of The New Day

Two units of red blood cells ordered for me today. That means benedrill. Benedrill means me being like passed out for half a day. That means no breakfast, no shower, no walk until my body is able to release from the drug hold. Even though we have negotiated reduction of the benedrill from 25 to 12.5, the lower dose benedrill near knocks me out.

The nurse comes in with stocking feet. "Pardon me," she says. "I stepped in TNP and though I've washed my shoes, they are still squeaking. "What good is a night nurse if she can't sneak up on you?" she asks. Her stocking feet approach honors my domain. I am reminded of the cultural compliment and cultural mandate of taking off one's shoes before entering the home. Welcome to my home room in your stocking feet.

Sunday, May 30, 2010

Hospital Quiet

The contemplative has nothing to tell you except to reassure you and say that if you dare to penetrate your own silence and dare to advance without fear into the solitude of your own heart, and risk the sharing of that solitude with the lonely other who seeks God through you and with you, then you will truly recover the light and the capacity to understand what is beyond words and beyond explanations because it is too close to be explained; it is the intimate union in the depths of your own heart, of God's spirit and your own secret inmost self, so that you and He are in all truth One Spirit. (Letter 21st August 1967) Thomas Merton

Go Home

Doctor said I could get out of here on Saturday but Kayla, Korrina and Kathy are sick at our Pete Gross House apartment. Kayla and Korrina missed school on Friday. Micala sprouted a 100.1 fever Saturday night. "We won't send you home to a sick house," the doctor said. "Stay put." So, I'm eating, sleeping, reading, walking and knowing that the door will open to the outside world when the all-clear flag is raised at the home front.

Blood Making Machine

"Do not be concerned when your counts dip back or stall," the nurse said. "That's normal." We aren't normal here. Lyn's marrow is on a steady climb. May 25th to May 30 blood tests reveal a reach-for-the-stars white blood cell trajectory: 0.18, 0.21, 0.38, 0.57, 0.75, 0.94. Wowowowowowowow!

Saturday, May 29, 2010

Lard Ass

So, I'm laying in the hospital bed reflecting upon the theological significance of "take up your pallet and walk." What can this verse have to do with my call to ministry and the greater good. Tonight and for today I found the short/sure answer to my prayer. Just get out of the bed and walk the halls -- move the legs. Breathe standing up. Circulate the body. Turn off "Star Wars" and all the commercials in between and walk sister walk. I had minimized to one or two strolls per day. Not a pretty picture. Just sat down from an up and at'm. Carol Machek on Island said to take a small walk every hour. I can hear your voice in my head Carol. Take my hand Lord. I'm making me a choice to raise out of this bed. Big talk not needed here. Pick up the feet. One in front of the other.

How People Will Talk

"God caused this and God is testing you," the Green Bay oncologist told me.
"I don't believe it," I told him back.
I don't remember anything more about our office visit but I remember going back into the waiting room by the big fish tank and talking to a man sitting there because I just couldn't keep quiet. "My doctor just told me that God caused this and God is testing me," I reported. "He is wrong," I made sure to add. The man did not reply. Still living the after-shocks of the doc's bomb shell theology, I hear my name being called to the big chair in room number 8. Put on a mask so that the nurse can access my Power Port with a 3/4 inch needle and take my chemo like a soldier.

Relationship with God is not something to be messed with. God will triumph and the truth be known but it sure is painful along the way. I remember when Velen Kruger fundamentalist that he was told me that I was an abomination to God when I cut my hair. Verlen knew the chapter and verse and put his nail split finger on the rice paper page to prove it to me. He kept reading those verses to me thinking one time I was going to hear. When I became a lay speaker, I remember Verlen wouldn't go to hear me preach. I was all dressed and heading out the door Sunday morning and he said; "You are an abomination to God. Women are not to preach." He showed me chapter and verse proof. I went to preach anyway.

From my experience, God does not hit a person up the side of the head with a two-by-four to get attention. God does not cause cancer. God does not hurt people to teach lessons. God is not some professor gone wild with mid term and final exams plus bonus questions coming at you and a grade point average breathing down the neck. God does not abuse God's power. God is perfect love relationship.

God is with Aderea who came in this morning to help me with my shower, rub my back with hydrating cream and make my bed with fresh linen so I could experience God makes all things new one more day. God is with Liz who came to walk the 7th floor east with me and point out that the limited floor plan could be a labyrinth walk complete with center triangle with the point of God, Spirit and Son to touch base with as I walk. God is with Joe who calls to say "I love you," one more time. God is with the people in the kitchen somewhere in this huge building who keep answering my calls and sending me more food and Arnell who delivers my tray to me and winks at me until I clap my hands and break out laughing. God is with the gulls who fly and swoop outside my window so that I'm with them in mid-air. God is with the doctor who came in today and said it was not illegal to keep me here past discharge and that waiting until my girls and care provider, Kathy LeClaire are feeling better is all o.k. and he will not send me home to a sick house. God is with Karen, my Stephen Minister assigned to me who came today and read Psalm 118 and prayed. God is with Marianne and Alison who are agreeing to hug and mother my boys until I can be on Island again. God is with house keeping who comes in and wipes all the cob webs away and empties all the trash to start fresh again. God is with Jennifer, the chaplain who came by yesterday and is on her way to Denali for vacation with her mountain man husband in for the treat of her life -- chaplain meets God's snow mountains. God is packed in every card that comes wishing well and care. God is in the good book scripture by my bed. God made my body and my body is doing the work I was made to do and being the miracle I was created to be. Thanks be to God.

Journey of a Call

In the South Atlantic, I was paddling on swells so deep that riding the bottom of the trough obliterated site of land until my canoe was lifted to the top of the next swell ridge and the Coast of Argentina came into view again. I remember it hot. The sky neither blue nor grey but white hot. In the trough I got a call from God calling me to community. I can not say that I heard a voice but I got the message of God calling my name. Shortly afterward, I crashed in the surf. Townspeople from Santa Terrisita, waded into the ocean to pick me, my boat and gear out of the waves. My head felt "iced" where the canoe had hit. A fire was built on the beach. My partner Verlen and I wrapped in blankets and sat by the fire. An off season restaurant was opened for storage of our boats and a place to sleep. Within a few hours, the Mayor of Santa Terrisita arrived with a proclamation which read that Verlen and Valerie could eat at any restaurant in Santa Terrisita for free for as long as we choose to stay and recuperate from the crash. A man named Tony took the proclamation from the mayor's hands and ripped it in two pieces. "Anyone can eat in a restaurant in our town," said Tony. "Verlen and Valerie are family. We will feed them." True to word, whenever it was time to eat the people of the town brought food and sat down and ate with us. I've always believed that Bread & Water got birthed on that Argentine beach. The ministry of hospitality and welcome for the traveler is life changing experience.
When my canoe journey concluded at Cape Horn in 1989, I returned to Michigan to finish my undergraduate degree and a Master of Divinity at Garrett Evangelical Theological Seminary. I began serving a two-point charge, Bell Oak and Williamston United Methodist Churches in Michigan, 1995. During my years as local pastor, the verse that continued coming to mind and heart was "feed my sheep." Eventually, after adopting six children, I recognize and admit to being a loaves and fishes operator. In contrast with my son Steven's meal prep., I notice that I'm a stingy cook. I'm always trying to stretch the dollar. The recipe calls for sour cream and I leave it out. We are feeding 8 people at the table and those who drop in so I cut the juice with water. When I have failed at "feeding my sheep" it is because I have been too practical.
Day 23 of transplant, I am hearing a new call -- "take up your pallet and walk." When physical therapy comes and accompanies me on a stroll I know that I am taking up my pallet and walking. But, I want to know to know more. What does the call to take up your pallet and walk look like? Is it more than getting out of the hospital bed? Where am I walking on neuropothied feet? Talk to me Jesus.

Starting Over

"Think of yourself as a toddler," the nurse advised. "You will be needing all your childhood immunizations over again. We destroyed your immune system. With your sister's marrow, you are starting over."
The toddler image didn't really set with me until I got sleepy this afternoon. Ran out of gas entirely. Needed more than a power nap. Felt like got to close my eyes can't go on one more instant. Good thing I don't get toddler cranky. Just pulled the covers to my chin and slept. Toddler chubby legs? Looking forward to clamoring the hills and chasing butterflies.
Mom had our baby shoes bronzed. Never thought I would need them. Maybe now.

Ode To Lynette

Hard working mama.
Remember your first job at Kroger Supermarket.
Shirt waist grey with name badge.
Check out girl at register.
Now assistant attorney for the City of Houston.
Designer clothes standard.
Your work ethic turns whatever you wear into roll-up-your sleeves serious.
High School Wranglerette
Chorus line joiner.
Cookie cutter parade uniform.
Cow boy boots and hat. Skirt and shirt with bouncing, jiggling fringe.
Kid sister.
Remember your winter wedding.
Full length knock-out raspberry wool gown.
Laying on your tummy.
White sheet cover.
Offering your bone to be broken.
Two doctors working you over.
Dueling aspirations.
Your marrow sucked and drained
Harvested and carted to my needing body.
Trusting the anesthesiologist to monitor your every breath.
Gift giver.
You bring a flower card.
A comfy navy pant and top matching yours from the gift shop.
"It's all good," you proclaim as Barney wheels you in to visit.
Watch and wait buddy
Checking in long distance to inquire.
Day 23
Count 240 neutrophils up from zero.
Engraftment at 500.
Birth mom.
Without a stitch.

Friday, May 28, 2010

God's Abundance

About six months ago, people started calling on my cell phone to reserve rooms at Bread & Water. One day I was having a blood draw and a woman called to reserve the Heritage Room. I remember laying on the recovery table from a lumbar puncture with chemo to the cranial spinal fluid and my cell phone rings. I take the call. While laying down, I'm taking a reservation for the summer season. Seemed like the right things to do. People are calling for rooms. I have rooms. Work out the details later. Later came just in time. A recreational education student from LaCrosse moved into the apartment at Bread & Water, LLC, Washington Island this week. He is opening the kayak business for the summer and managing the rooms. Both rental rooms at Bread & Water are booked for the Memorial Day weekend. The guests arrived today. I have never met Billy. God works in mysterious ways. God's wonders to behold. Sounds like engraftment to me.

Weight Steady

Hope, hope you never have to go through this. If you do, when they weigh you and they will, take down and off everything you have even your watch and your hat and certainly your shoes and jeans. Why? Chemo is measured by body weight. The poison put into your body is going to be measured and calculated by your body weight. Don't add an ounce that doesn't have to be.

The Little Green Pain Pump

I refused morphine and other drugs for pain through transplant. Said no to the pain pump even when the doctor said that relieving the stress in my body could promote healing. But, I found the little green button on the nurse call wand that is printed with the word "power." Press. Arnold Swarteneger is hanging upside down from the landing struts of a flying helicopter, holding on with one arm to the copter and reaching out with his other arm to rescue Jamie Lee Curtis who is wearing a little black dress and climbing out of the sun roof of an out of control limousine. The driver of the limousine has been shot and the limousine is screeching and careening from side-wall to side-wall on a bridge toward the end of the bridge which is blown out. Arnold grabs Jamie by the arm and swings her through space just as the limo dives off the blown bridge. When Arnold and Jamie have landed and hugged, we learn that Arnold's daughter is now at risk. He commandeers a jet fighter and takes off for New York. Arnold flies into a building and finds his daughter hanging onto a crane boom overlooking New York with a sinister terrorist climbing closer. Arnold flies the jet directly under the crane boom, opens the cockpit glass and tells his daughter "jump." Relieve the stress in my body? By the time this program is over I figure I've been holding my breath. Change channels. Just by surfing I've seen rape, murder, dismemberment, robbery, stabbing, neck breaking with bare hands, kidnapping, suicide, war, times plenty. I try Sponge Bob but Sponge Bob has green bodily fluids coming out by mouth and I don't want the power of suggestion. For a few days, I experimented with the little green pain pump button that says "power." Zone-out time. Press. For all the images that are sticking with me, I'm not sure I avoided the hard stuff.


I felt down so far and long that I had no celebration in me. Enter Liz Budd Ellmann. She came into my room announcing the good news of my increasing counts. Her face was smiling and her voice happy and excited. She was sitting down but it seemed that she was dancing in her chair as she talked about how my body is healing through this transplant and how wonderful I look today and the progress she sees from this past week when she came to visit when I could hardly talk. My lunch comes and she agrees to eat with me. She gets the blueberry yogurt. Instead of eating alone, we've got company. And Liz talks to me about Miriam, the sister of Moses and the dance and song of Miriam that she feels such a part of because of a friend of hers who explored and illuminated the story some years ago. "Did you bring the tambourine?" I ask. "No," she admitted. At first it was hard to make eye contact with Liz. I felt so tired and worn down. While she was here, I kept thinking that here is a new friend who came to celebrate with me. Came in with celebration in her heart and invited me to put on my dancing shoes. Then, the doctors came in and called me a "champion." "You can go home tomorrow." "But Kathy LeClaire is sick and two of my girls were out of school today being sick," I explain. "Well, Sunday or Monday, we won't send you out to be with the sick." I am not alone anymore trying to conjure energy of joy. My friend Liz has come to celebrate. The celebration is multiplying. I am swept into the celebration. Have you ever played hidden pictures? You are invited to look at a dense drawing and find the pear or find the feather hidden between the lines. Sometimes it takes turning the drawing upside down and looking long and hard to find the shape inside. My celebration was like a hidden picture. I found the tambourine. When the doctors left the room, the hard plastic lid of the food plate on my tray and the bottom hard plastic liner that keeps the food hot became my tambourine. I stood up and started marching in the room beating the the two halves together in Miriam's song.

Eating Again

"Can I do it?" I asked the nutritionist. "You're a rock star," she answered. "Pat my head and tell me I can do it," I ask her. "We took you to hell. You can come back. You can do it. Just go slow." I'm ordering real food and chewing real slow and swallowing. Really completely swallowing again and it doesn't hurt. Eating feels great and my body is working and I'm coming back to life and I'm making poop, beautiful not too hard and not too soft poop. The system that was shut down and murderized is coming back to life.


Please forgive that I made an urgent call for prayer and then went silent on this end for two days. One of the difficulties on this end was the TPN. Nutrition in an I.V. bag. One bag is about as big as a back pack in size and a lime/yellow color. Another bag comes with it -- a white bag of lipids/fats. Somehow, my body had tanked up on the product so much that I was having a huge metallic taste in my mouth, upon waking was disoriented, weak and fatigued -- like pass out rather than sleep when tired. Early Thursday morning, I said I wanted the bag stopped. The nurse did. When the doctors came through I heard that TPN is over $500.00 a bag and really a great batch of vitamins and this would be the last day and I might just as well finish the bag. We started the IV drip again. Within a few hours I was having symptoms so I quit the bag and good ridden. I did an internet search and found that TPN does have side efforts though not common and is certainly used on bone marrow transplant people and usually used in critical nutrient needs. So, we are over that hump. When the nutritionist came in she said that the bag of TPN is a whole lot more than $500.00 per bag. I don't know the figure but I had it thrown in bio-hazard bag and I'm eating again.

Wednesday, May 26, 2010

Prayer Call

My blood pressure is 86/58 at rest and standing 66/60. My temperature is 100.1. I have pink, raised polka dots on my legs. I am calling for prayer while the nurse pages the doc. Thanks for your help. Erika my nurse is coming back in with I.V. fluids to try to soothe this puppy. love, val

Tuesday, May 25, 2010

Not Representative

So, I'm reading my blog and I'm wondering what I'm doing writing this stuff. I am just not getting the real picture out. My breasts are peeling. My eyes are so dry they hurt. My toes are starting to curl over because I've been in bed so long instead of standing up. Joe's daughter Becky sent a photo of our family taken about a year ago and I put it on the wall and it is the most painful reminder in this room that life is not as it was. My blood pressure 90/64 most of the day. Physical therapy comes and I stand up -- my heart rate is 123. We start walking and fortunately, the rate goes down to about 110. I'm tired. I'm scared. The pain was so great in my throat due to mucositis that I quit swallowing three days ago and tethered myself to suction. Yesterday, after three days of nutrition in a bag IV, I was afraid to eat because it meant that I would have to swallow and I didn't want to feel that pain again. A couple of weeks ago, I read more of the fine print. Before the 100 days is over I will be scheduled for 6, count them 6, more lumbar punctures -- spinal taps of cranial spinal fluid with injection of chemo into fluid before the needle is removed. Six more of these procedures that I hate. So, why do we have to do this? Because all this bone marrow transplant stuff is taking care of the blood making in the bones and the blood/brain barrier means that the leukemia can still have a field day in the spinal fluid on a totally different track from anything we have done with the rest of my body. "ALL has a high risk of showing up in the spinal fluid," says one nurse. "Google it." I haven't, I won't. Just can't take any more of that information is power stuff right now. What I know is that I have endured about 6 of the Intrathecal methotrexate during induction and consolidation back in Green Bay and two Intrathecal methotrexate at the Seattle Cancer Care Alliance before entering the hospital for transplant. All fluid, each test has been clear. No leukemia. Let us stay on this horse. So, I'm writing and trying to hear myself and what I am hearing is that nothing appreciable has changed except that I am worn down and out and what I need is renewal. My prayer: I'm too close to the bone right now and right here. I need some margin. I need a recharge so that I can face the next wave. I am getting curious about how God is going to fill me up so I can face the next take down.

Marrow Found Its Way

Remove marrow from Lynette's body with BIG needle. Marrow seeing the light of day for the first time. Shove marrow in bags and leave Lynette passed out on the operating table. Bye, bye Lynette says marrow as marrow is put on elevator and sent to Valerie. This strange big sister asking to hold the bags as the bags are brought into the room. She is crying. What a welcome. Who is this person any way? She is holding marrow bags to her checks but marrow doesn't know what is happening except the nurse is hanging the bags and here we go down another tube and into her central line and body. This looks more like what we are used to. Swim around, swim around. Two days of swimming around in the dark and here comes the poison -- chemotherapy drugs to knock down the aggressive T-cells in Lyn's marrow. Snipers, pot shots, mayhem, shock and awe. Collaterally damage. Marrow's hit. Dive and cover. Dive and cover. And then it gets real quiet. For nineteen days it gets real quiet. The projected miracle is that the marrow will find its way and make a new home and make blood. Yesterday, I asked the doctor to come in for a special consult. I had two questions written down: 1. Am I going to die here? and 2. How long is too long to wait for engraftment? Her response to 1. "That's not our plan." What could take you out now is infection. Response to 2. "We're waiting. It could be another couple of weeks yet."
4:35 a.m. this morning the nurse comes in. "Good news," she claims. She didn't have to say anything else. I knew she was telling the news of engraftment. Day 19. White blood cells go from zero to 0.18. Enough of a bump to believe that Lyn's marrow has found its way and made it's home and is making blood.

Monday, May 24, 2010

Seize The Day

"I think I'll just lay down. I don't feel well today." I tell the nurse while she is taking vitals.
"There are good and bad days, you are just having a bad day," she explains.
"There are no bad days," I report.
My tears start coming and they don't stop and she leaves and I am sitting up and sobbing. I don't panic. Just curious about the melt down. It started coming on last night when I caught a glimpse of me in the window as the lights outside started to fade. Bald headed lady. Hospital beds since November. This is my third hospital. I've been in this one for 26 or 27 days. Who is counting? One nurse comes in a tells me that my full time job is managing my mucus. Watching my sluffed off cells travel past the suction wand into waste container is not gainful employment. I think there has got to be something worse than "it's all about me." That worse is "it's all about my body."
So, I come to the point where I can't take it one more day or one more minute. I push the nurse call button.
She comes in.
"I have a really big favor to ask you." I wait until she is in front of me because I really need eye contact. "You are going to have to open your mind, I preface." She waits.
"I want you to take this bed out of here. It is really important to me that I am not defined by this bed another minute and I really need this bed out of here."
"I'll have to ask the charge nurse," she explains and leaves. And, I'm knowing by now that if they can't get the bed out of here I'm out of here and wondering where I might sit out today since it is a locked ward. She returns and says "can do." "I want you to have a good day," she said. Tech support arrives. I watch the bed rolled into the hall. I told them it would just be for an hour or two but I'm not calling for that bed until it is time to sleep -- regular time to sleep, not sleep all day and then try to sleep all night time to sleep. The seductive centerpiece proclaiming me a sick person is gone. The bed is not my friend and it is banished out of this place and I'm sitting up with my clothes on and I'm blogging. The nutritionist comes in and says that she heard I want to start eating again but she says I have to start with liquids only for a few days and we will over lap with the TPN. The doctor comes in and he likes the new room look. "You are giving me some good ideas," he says. "I have some patients that I need to make a doctor's order to move the bed out of the room." One of the other doctors on the team says "you have enough room for dancing. Before they leave, I ask her to wait . "You had a good idea. Lets do it." I get up and put my arms out and we dance a few steps until I can sit down again. My counts are not in. I have not engrafted but we are doing this thing. Thank you Jesus.


Ring, ring goes the telephone
"Mondo" pops up on the screen.
Eleven year old Shammond is calling mom.

"I love you."
"I love you too mom."
"I'm so glad you called."
"I can't talk very well"
"It's o.k."
Is he worried about me because I can't talk between a whisper and croak? Has anyone told him that the limitations with my vocal chords is normal at this point in transplant? What if my voice scares him?

"How is school?"
"How is baseball?"
It is really hurting me to talk. I imagine that any moment Shammond is just going to break into tears and cry and just let down about how hard this all is but he is quiet.

"Marianne and Mark are coming this week (on Island)." I tell him.
"Yea, with the new dog." He's up on that one. For a moment, I am seeing his face smiling and the dog licking him and what it feels like to hold a new pup all squirmy and fun. In my mind I can hear Shammond laughing and I wonder if Marianne knows she has purchased a bundle of healing on four legs.

"I love you Shammond."
"I love you too."
"I miss you."
"I miss you too."
Big quiet pause.

"How is soccer?"
Big pause.

"Your friends?"

"I love you."
"I love you too."


"Mom, can I sell the doodle bike?"

So, I'm just thrilled about Shammond calling me. It is 5:15 in the morning and he is calling me before he goes to school on Washington Island and about half an hour past hanging up on the call, I begin to glimpse that Mondo, this little boy eleven years old still thinks I'm mom. He asked me about the big ticket item. "Can I sell my doodle bike?" Why would he have to ask me if I wasn't still mom. I'm not there to tell him to wash his teeth. I can't hug him going out the door. I can't wash his clothes or put a plate of food in front of him or read a book in bed with him or watch him bike down the road but Mondo, through thick and thin still knows I'm mom. He knows more than me.

Sunday, May 23, 2010

I Beg To Differ If I Could Talk

Not talking is difficult. Especially when a nurse comes in and starts talking about the "oar" that I have in my bed. Imagine the rumors that could start. I would tell her it is a paddle and not an oar but I don't have the energy nor the voice.

Now Hear This Carol Meyer, et. al

For Carol Meyer, Bonnie Burnham, Connie Hatch and all the volunteers, sponsors and participants for -- I am thinking of you every day. Marveling of you and what you are doing on Washington Island to prepare for the racers. I remember how exhausted we were last year and how excited we were as the days got closer to our Year I event. All the details the months before, weeks before, days before, night before and day of. Part of me is there with you. Don't think I did this on purpose to dump more of the work your way. But, hey, since you are doing it, know that I am benefiting greatly by what you are doing -- for all the good reasons of a great event on Washington Island for community and economy and all the number one flyers for purpose know that there is a woman in room 7212 at University of Washington Hospital who thrives on your efforts. You are not helpless in anyway. You are making me well by carrying on with the vision and practice of the great race around the Island and teaching people to kayak and opening up the waterways around the Island for paddlers. As I see it from bedside, the Washington Island Ferry faces the terror of Death's Door every day and makes the crossing a community event, therapeutic routine. All of us Washington Islanders are practiced crossing Death's Door. Hear what that says about us! And, some of us privileged few, through the get to paddle across. Life just doesn't get any better.

Saturday, May 22, 2010

Looking Forward

Jennifer Jenkins, a chaplain at the Seattle Cancer Care Alliance visits me. Weeks ago, Jennifer offered the blessing of stem cells and poems along the way. I explained to her that with all the big deal about Happy Transplant Day that happened here -- including an over-sized card from the nursing staff -- I'm now looking forward to engraftment. Someone at sometime in the middle of the night is going to get the read-out of my midnight drawn labs and they will see the bump in numbers that will signify that we have engraftment. Wake me up. I tell them. Come down the hall running with your hands held in the air celebrating.
Jennifer, will you help me mark this anticipated occasion? Jennifer brings me Miriam's Song -- Music and Lyrics by Deborah Lynn Friedman:........ And the women dancing with their timbrels Followed Miriam as she sang her song. Sing a song to the One whom we've exalted. Miriam and the women danced and danced the whole night long. And Miriam, the Prophet took her timbrel in her hand, And all the women followed her just as she had planned. And Miriam raised her voice with song. She sang with praise and might, We've just lived through a miracle, we're going to dance tonight. As Miriam stood upon the shores and gazed across the sea, The wonder of this miracle she soon came to believe. Whoever thought the seas would part with an outstretched hand, And we would pass to freedom, and march to the promised land.

Reading Job

Naked I came from my mother's womb, and naked I will depart. The Lord gave and the Lord has taken away; may the name of the Lord be praised. -- Job 1:21

I had no idea that a miracle could hurt this much.

Day 16

I wake up and Kathy LeClaire is here. I reach out and grab her arm and won't let go. She reads scripture and sings. Graft hasn't happened yet. They say that a marrow transplant is slower than peripheral cells. Add the chemo two days following transplant to blast donor aggressive T-cells and that slows down graft further. "You are doing great," the doctor tells me again this morning during rounds.

Friday, May 21, 2010

Cello and base violin

A concert in the hall today. I pulled my chair out past my door and sat listening but it wasn't enough. I went over and sat on the floor between the two instruments and closed my eyes. Stereo cello and base violin, deep, resonate, filling in empty places I didn't even know were there. Music had tears flowing down my cheeks. Total, transport out of here bliss.

Swallowing Over

All the effort of eat slow, eat hurt, eat anyway is quit. Today, eating led to chocking and chocking led to vomiting. There is so much mucositis in the back of my throat that my swallowing doesn't happen anymore. So, I'm not going to swallow again for a while. That means IV food in a bag called TPN, Total Parenteral Nutrition with Lipids. Absolutely no other choice. My suction and managing mucositis is a full-time job. All predictable they tell me. Seems to me that the easy stuff has happened so far. We are getting much more serious into this. No turning back. Continue in prayer.

Hurting Too Much to Write

I'm still here. Won't quit. Platelet transfusion yesterday. Valerie

Going the Second Mile is Turning Into Marathon

Kathy talked to her husband Gene. "He is disappointed," she said. "But, he understands. I'm staying." I'm crying and leaning against her body. She is rubbing my back. She always carries her testament and reads to me. She also has her song book and she is singing to me.

Thursday, May 20, 2010

Imagination Into Ink

Micala chosen for prestigious spot to read original poem with Writers in the Schools and the Seattle Public Library. Will flesh out -- hurting too much this morning to write.

Spider Man

Window washer -- will flesh in later just hurting too much this morning to write.

Wednesday, May 19, 2010

Life Support

I could not leave the hospital today and survive. My immune system is destroyed. With zero white blood cells, my body is totally dependent on care, drugs and blood products. The bone marrow floor is where I have to live. Hang on. When I do get out, it will be because I have engrafted and my counts are rising, all antibiotics are quit, I'm eating and taking medications orally. We are praying to reach the goal.

Sisters of Glory

Susan R. sent the CD player when I lived at St. Vincent Hospital in Green Bay. Deb Cook delivered the CD a few weeks ago when I moved into University of Washington Hospital, Seattle. To get down a few sips of Ensure past the razor-blade feel of the back of my throat and mouth, I have the excellent help of the Sisters of Glory. Insert beat. Can you hear it? Use it. Move body, head. Get into it. Remember those ten toes dosed by Vincristine that suffered nerve damage and don't feel a thing? Wiggle them anyway. Dancing while sitting up in a hospital bed. Now, close my eyes and listen. Listen deep and drink. Oh Lord, I'm scrambling, trying to make it through this barren land but as I go from day to day I can hear my Savior say, "Trust me child, I'll hold your hand." I'm coming up, yes I am, on the rough side of the mountain. I must hold on to God, His powerful hand, I'm going to get there. I'm coming up on the rough side of the mountain. I'm going to get there cause I hear him calling. I'm doing my best. I'm doing my best. To make it in. The electric piano rips through the chorus. I'm coming up Lord, I'm coming up Lord although my burdens sometimes pres me down but if I can only keep my faith, I'll have strength to run this race. I'm looking for my starry crown. I'm coming up on the rough side of the mountain. I must hold on to God, His powerful hand. And this old race will soon be over, then there will be no more race for me to run but I've got to stand before God's throne, all my heart aches will be gone and I'll hear my Savior say "Well done." Drinking the Ensure, it is like the little bottle has become a microphone at my lips and I'm singing but I'm really drinking it in. Little by little and my body is dancing. I'm coming up on the rough side of the mountain. I'm coming up on the rough side of the mountain. On the rough side of the mountain. On the rough side of the mountain. I'm coming up. Holding on. Holding on. I hold the bottle that has morphed into a mic in my right hand. My left hand holds the bottle cap. In my transformation, the bottle cap becomes the power cord for the mic and I'm on a stage with the Sisters of Glory, one of them right in their pack. My left hand with the bottle cap morphed into a power cord goes way over my head and I'm waving my hand in praise and that Ensure is still coming in and going down sip by sip. I'm thinking sparkling dress, high heels, no wig, and real hair. I am in hospital issue p.j.s. My body is moving and I'm alive again. On the rough side, on the rough side of the mountain. I'm coming up. I'm coming up. On the rough side, on the rough side of the mountain. I'm coming up. Lead cut. Sip, sip, sip, sip sip. Play it again. Sip. Sip. The bottle isn't empty yet. Rewind and play this cut again. Complete balanced nutrition. Immune balance 8 fluid oz. One hour of working my way through and the little bottle is not empty yet. Play Rough Side of the Mountain one more time. Sip, sip. I quit at half bottle. Screw the lid on, put the CD player away and try to sleep.

Tuesday, May 18, 2010

Here They Come!

Kathy Garner called and said she was taking Micala, Korrina and Kayla to the library after school and would stop by with them to see me this afternoon. "Call me when you get close by. I want to get ready for them," I told her.
She called. Kathy LeClair was already with me so she helped by putting the bed-side commode into the bathroom and shutting the bathroom door. She put the tray table against the wall so there would be room for Kathy G, and three beautiful girls. I took the wig out of the box. Put the stocking liner on my newly balded head and fit the wig as best I could. I didn't ask Kathy L. what she thought. She didn't say. The nurse came by and liked the red/brown color. "Sassy," was the comment she offered.
I tried waiting in the bed but couldn't. Kathy unplugged my I.V. tree and set a chair out in the hall. So, I sat outside my door watching for my girls. Here they come. They didn't see me as they went from the elevator to the front desk to be screened for infectious disease. They disappeared for a few moments while the receptionist asked them questions like "are you sneezing? do you have stomach pains, fever, etc." and then stamped a label that reads "Screened, with today's date," onto the shirt of each visitor that passes.
And, then they were coming down the hall toward me. "Mom, your hair," Kayla saw me first. Korrina got a very big smile. "I love you mom. I pray for you every night," she said as I hugged her. Micala came more slowly down the hall. I've seen her skip, hop and giggle with her friends but hey, she was visiting mom at the hospital. I don't know how this girl does it but she looked poised and put together even while wearing a mask. This is the nearly 13 one who when 3 could eat a cupcake in a high chair and not smear chocolate nor spill crumbs on her clothes.
We talked. I listened. "What do we do when you and dad both die?" asks Korrina. Wonderful and loving people would take you in. "Like Kathy L.," asks Korrina. "Yes." "I want a wig too," said Korrina many more times than once.
"I'll be here about another week and then will be home with you at the apartment," I explained. The nurse came in and talked with them about the mucasitis and why mom has a suction wand just about planted in her mouth. Kayla started singing songs from "My Fair Lady." A few of my favorite things and Do, Re Me. Micala told about straightening her hair. "It didn't hurt mom." She got away with it, I've always wanted to avoid the chemicals but on a shopping trip with a volunteer with $5.00 to spend in the grocery any way she wanted a hair straightener is what she wanted and I wasn't there to say no. She showed the new ear piercing --- that makes two on each ear -- another trip with volunteer that she had talked with me about. "Will I be here on my birthday?" she asked. "We are on Day 12 and we have 88 days left to go. " I explain. Micala, the straight A student says in less than a minute "my birthday is on Day 72. That means we will be here." She didn't seem too upset. And, proceeded to tell me about going to a home church with Kathy on Sunday where she met a woman with the same birthday as her - August 17. Kayla starts doing jumping jacks and dancing in the room. I'm loving it. Korrina has dry skin so I share some of my cream with her.
I ordered ice cream from the kitchen. One cup for each person. I don't think that was allowed for visitors but since I haven' eaten in days, the hospital has been saving money on me. We watched t.v. and hung out. I took the wig off while they were here and put my usual knit cap on so I could be more comfortable. Then they left with Kathy L. to catch the last shuttle to the Pete Gross apartment. Everybody hugs me good bye. Kayla goes down the hall calling "I love you mom. I'm praying for you mom. You are going to make it mom." I can still hear her voice calling out though her body is leaving the building. When they are gone, I realize how much energy it took to be with them. I lay back in the pillow and decide I had best go to the bathroom. I don't make it before my p.j.s are soaked and the floor is puddled brown. They got out just in time.

Visit Someone In The Hospital Today

Amazing what a difference one person stopping to visit into one hospital room can accomplish. The nutritionist came in today and said "I wish more of my patients were like you. So many of them are on the IV feeding system. You are drinking two Ensure a day and I'm a happy camper." Then, the nutritionist opened up my world. "When you are ready, why don't you try some soft foods like cottage cheese........" If she hadn't come into my room today, I would not have picked up the phone and ordered cottage cheese and peaches and I would not have labored to cut those peaches into minuscule bits and then slow but sure eaten solid food for the first time in about a week. She said it, I heard her and I tried it. Hurray. The physical therapist came in today and he got me up and walking and exercising again. Yesterday, I had benedrill as a prep. for transfusion. I spent the entire day receiving three units -- one platelets and two red blood cells. I didn't and couldn't eat until Kathy LeClaire came to visit. She sat by the bed and I held onto her hand. My bottle of Ensure was delivered and I drank it, slow by sure until I turned the bottle upside down, smiled and plopped back on the pillows.
I used to be a hospital chaplain at St. Lawrence and Sparrow Hospitals in Lansing, Michigan. I trained through Clinical Pastoral Education, CPE, at Bronson Hospital in Kalamazoo, Michigan assigned to pediatrics. As a pastor, I have visited at bedside hundreds upon hundreds but never did I ever understand what it means to have a visitor until I'm laying here.

Only two in thousands

"I've seen thousands of people over the years I've been here and only you and one other person refused the pain pump," the nurse marveled. It isn't heroics. With a history of abuse, I don't want to be knocked out.

Wig Hat On My Head

So, I'm looking in the hand held mirror and I start sobbing.
"You don't like this one, I hear you, this is one you don't like," says Morgan, the woman from Beauty and Cancer.
I can't answer her because I still can't talk with the mucasitis in my throat, mouth, ears, digestive track et al. I just keep looking in the mirror and crying.
"I understand, you don't have to try and talk. You don't like this one. I have another one," she said and turned away from me to dig into her box.
Since November, I've been coping, coping real well. Carrying on like a trooper they tell me. Everything thrown at me, I take. And when I can't take it that very moment, God gives me some time to prepare to take it. I reflect, heal and regroup emotionally -- basically, I haven't done anything and can't explain it except that God has brought me through with my diagnosis, treatment, neuropothy in my feet and legs, loss of hair, weakening muscles, falling, learning to walk again, lumbar punctures with chemo injected into the spinal fluid around the brain and plenty more else, plenty. I remember the time when I lay on my bed in the living room in our house on Washington Island and I was thinking that I just had to get out of this and if dying would bring that relief faster than bring on death. Fortunately, I heard myself thinking this and picked up the phone and called the counseling service at the American Cancer Society. I got connected to a woman and told her what had just happened. "When were you diagnosed?" she asked. November, 2009, I told her. Her voice changed as if she were talking to a child, not in a bad way but in a way that clued me that I was an infant in all this. "You are early on in the process. Don't give up now. Fight the good fight."
I've been fighting the good fight. I've been coping hot and heavy, long and true. And this woman from Beauty and Cancer comes into my room and puts a wig on my head and hands me a mirror and I started blubbering because for the first time since this past November, I catch a glimpse of myself as a whole person, normal person woman again. I hate wigs, can't think of much else so unnatural. I was only making the inquiry for a wig because they are free -- come with the territory in the bone marrow transplant unit and because of giving a smile to Micala, Korrina and Kayla next time they visit. I wanted to see the look on their faces but here I was seeing the look on my face with tears that just wouldn't stop. I probably won't wear that wig much except for the next time the girls come to visit and I want to surprise them. But the wig has done its job already. It gave me a peak at the person with hair that I was and the person (all the way to the roots) I still may get the fun of being. The tears? A glimpse of me in the bed here and now-- grieving, coping and carrying-on.

And So It Rained.....

Finally, after being here more than a month, I get to watch a rain storm come in and blow out. The hospital is dripping. My window has rivulets. I'm watching the drops pelleting the side casing of my window. Drip, then drop forming until another burst of drip. Like the drops in my IV pump coming down from the bag only better. The sky got dark. The rain came in and I could almost feel the cool relief from the seventh floor. Short lived. Blue sky patches showing half an hour later.
Paddling taught me to love the rain. I love watching the response of water surface to rain. When the rain starts slow, I enjoy sky water meeting surface water. There is jump-for-joy action as the drop is received and ripples happen. When rain comes in hard and fast, water gets beat down as if crushed by a whipping. I love watching the rain travel across the sky.
When the wind comes -- those glorious days when the wind comes and I'm fortunate enough to wake up to it, I get to be wind bound and stay in the tent all day, catching up in my journal, reading, extra sleep and looking at the map.
When it rained today in Seattle, for a moment I believed that I was in my tent looking out. Wind bound. What a great excuse for being right here.
If you ever hear a weather broadcaster on t.v. saying that it is a "miserable day out there, it is going to rain all day and you'll have to take your umbrella," turn him or her off and find another announcer. That one knows nothing at all about the remember-your-baptism, marvel of rain.

Sunday, May 16, 2010

Doctor is Confident

I'm loosing my hair all over again. Spiking a neutropoenic fever. Projectile diarrhea with only seconds of warning. Receiving I.V. anti fungal, anti-biotic, anti...., anti.... and more. Bags of fluid hanging from the tree just to keep my body hydrated. Getting weaker laying in bed and the doctor comes in and says "You are doing great." "Right where we want you at this time." Kathy LeClaire came by and we took a brief and very slow walk in the hall.

Saturday, May 15, 2010

Remember This

For all the choosing the right center, qualifying for treatment, getting here, logistics, science, research, careers, white coats, blood draws, conditioning, for all that has led to this time of here and now, it comes down to Lynette's donor cells en grafting and making me home. We are waiting on a miracle. I don't know if sharing a room together while growing up and sleeping in two matching Ethan Allen beds and matching spreads has anything to do with this. At night, we used to make hand shadows on the wall with a flashlight spot.

When will we know? One day, the blood draw report will come back with a little bleep. A tiny rise in counts. The timeline is different for each person.

Miracle, we are in progress.

Will It Preach?

As Jesus and his disciples were on their way, he came to a village where a woman named Martha opened her home to him., She had a sister called Mary, who sat at the Lord's feet listening to what he said. But Martha was distracted by all the preparations that had to be made. She came to him and asked. "Lord, don't you care that my sister has left me to do the work by myself? Tell her to help me!
"Martha, Martha," the Lord answered, "you are worried and upset about many things, but only one thing is needed. Mary has chosen what is better, and it will not be taken away from her." -- Luke 10: 38-42

When I lay with my head on the pillow at St. Vincent Hospital in Green Bay and received my diagnosis of Acute Lymphoblastic Lukemia in November, 2009, the Mary and Martha story in the bible came to mind often. One of the ways that I made sense of what was happening to me was to consider the necessary transition from being a Martha-type busy in the kitchen (and all else) to a Mary-type sitting at the feet of Jesus. I remember being grateful that I was at the feet of Jesus, in the arms of Jesus and the busyness had quit. Cancer quit the rattle of pots. Cancer re-wrote the agenda.

When I was still in the hospital bed at St. Vincent, I set a goal of one day preaching the Mary and Martha text. I'm taking the chance now. With my clergy stole hanging from the closet door in room 7212 at University of Washington Hospital, Sunday coming tomorrow and the hospital bed and laptop contributing to a bully pulpit indeed.

First, I was wrong about Martha and Mary. From where I'm reclining now, I don't think the story is about the grander merits of piety over works. For years, this bible passage and the way I heard it preached contributed to my thinking that house work can stall and home management be abandoned while communion with Jesus retains centerpiece. Now, I'm more willing to explore that the passage is not a treatise for contemplative life. While I have a bible verse displayed in my hospital room that says "Be Still and know that I am God," I have also heard "What God gives your hand to do, do it with all your might."

I used to walk to Bread & Water before dawn to make pies. My activity and task did not preclude communion with the Savior. Can you wash dishes while singing hymns to the Risen One? Can you diaper babies while praising Jesus? Can you hoe the garden while more thoroughly knowing the glory of the kingdom? Activity level does not determine communion nor presuppose piety.

Placement of the text may increase our understanding. The Mary and Martha story follows the Parable of the Good Samaritan in the Gospel of Luke. Service ministry is celebrated in the Samaritan story. The problem with Martha is not her service ministry. Martha's problem appears in relationship with Christ. Martha tries to manipulate. She tells Jesus what to do and expresses affront when it isn't done. Did Martha ruin her own party or is she giving us a great example of how an authentic relationship with Jesus is forged?

If this scripture passage was scripted as a rock opera, I would cast Tina Turner as Martha. Tina would march out of the kitchen in a short skirt with white apron, high heels and black stockings waving a wooden soup spoon at Jesus. She would be be ranting with her plea. "Don't you care? Don't you care for me?" If we cast Tina as Martha then maybe no one would ever think that Martha could be you and me. I hear that Martha woman railing on Jesus: "Lord, don't you care?" Can you see that wooden spoon waggeling? But, you know what is absolutely wonderful about that picture? Martha is engaging Jesus. She is coming right out him instead of running away. Jesus doesn't cave. Martha's pleading in whatever guise sounds like temptation to me. If Martha were talking to me that way, it would be so easy to dip into temptation and fall all over myself so that my caring could be recognized and beyond reproach. It would be so easy to give into the put down wail and want to save the day as the big shot and solve the woman's problems. But, Jesus doesn't give in and doesn't submit to temptation when his integrity of caring is questioned.

Martha is not subtle. She doesn't even use an "I" statement, like "Lord, I don't feel cared for." Her words, though a question sound like an accusation or bait. "Lord, don't you care?" We don't know if myriad frustrations have led to this day and if Mary has more than once been deemed lazy. Whatever the baggage, Martha is going in with the big guns of her expectations and willing the Lord to be cop.

"Lord, don't you care?" What a put down. I wouldn't care what Martha was serving for dinner at that moment. I would want out of there. Or, maybe I would just be stunned to watch what was coming down. God is love. Jesus is God's perfect love and Martha is accusing Jesus in the no-care zone. What an ice breaker.

Twice in the passage, we are told to look at a bigger picture. One the scripture sets the context, the second time, Jesus explains the backddrop. Verse 40 outlines Martha's behavior by explaining "Martha was distracted by all the preparations that had to be made." Jesus, by his own words conveys his acknowledgement of her situation. A housewife overwhelmed. Could she have planned ahead and just pulled a ready-dish out of the freezer. Maybe her choices were too ambitious in her effort to be special. What can we squeeze out of this passage about self-care?

Martha is a hero in the story for me. While Mary cozied at the feet of Jesus, from my reading sort of moon-faced muppet style, Martha "opened her home to him." Whatever her limitations. Whatever her vulnerability as her behavior is revealed, Martha opened her home in the midst of swirling questions and the danger of persecution for harboring this Jesus. Martha got Jesus in the door and may have wiped the dust from his feet. Jesus was traveling with the disciples but Martha let Jesus in. Face-to-face intimate with no t.v. nor radio blaring to believe we could get distracted from the people gathered there. The territory of letting in is what happens in this story because Martha doesn't hide behind a hostess mask. She bares the primordal and messy stuff of anger, jealously, frustration and betrayal. Martha shares her ground truth with Jesus. What does that tell you about what is fair in relationship with Jesus?

Martha doesn't stop there. She isn't done being real. Her brand of welcome is to marshal the guest. She complains. "My sister has left me to do the work by myself." Martha exhorts. "Tell her to help me!" Martha is honest enough to reveal where she is stuck. She trusted relationship with Jesus enough to rattle the cage and be herself right where she was at the moment.

I studied years in a spiritual direction internship to be able to notice, avoid and disentangle being triangulated. Jesus responds to the ploy for triangulation (take sides and get stuck in the middle) with love that is more than textbook perfect.

Jesus is able. Listen and watch what he does. Jesus does not play two ends against the middle. Jesus does not try to compliment the hostess nor further her case.

"Martha, Martha," Jesus calls her name twice. I can almost hear his voice speaking her name, inviting, non-threatening, accepting, calm and not willing to be used. "You are worried and upset about many things." Jesus heard Martha. He acknowledges and affirms that she has a lot on her plate. He does not discount her.

"But, only one thing is needed." What is that one thing Lord. We are now hanging on every word. "Mary has chosen what is better, and it will not be taken away from her.

The better is chosen and will not be taken away from her. I hear Jesus saying that when this meal is over it won't be like one more meal made, one more guest served, one more day gone by and the dishes washed in the sink before bed. Jesus promises that endless Ground Hog Day is a myth. What Mary demonstrates at the feet of Jesus is something that Martha can have too. Mary models the focus on relationship. No matter if she is in the dishpan, mowing the lawn or fighting cancer there is security and peace in relationship with Jesus.

Invite Jesus in. When you invite Jesus into your house be curious. What will you reveal and learn about yourself? . Beware the temptation of pushing Jesus around for your own purpose. He won't move past who he is. Being with Jesus, we have the great opportunity, privilege and call for being changed.

Back at the Mary and Martha house with Jesus inside, the action is quieting. I realize that I have tried to put myself in the place of Martha and Mary and tried to pysch out what is happening for them but now I'm wondering what can we learn about Jesus in this passage text? I have to read the text again and try and put myself inside the house too. Verse 38 says that Jesus and his disciples were on their way.... a woman named Martha opened her home to him." Opened her home to him. There is no crowd. Jesus is with the two women and the disciples are no where to be seen. Verse 39 reports that "Mary sat the the Lord's feet listening to what he said." I am drawn to sit at his feet also. Mary gives me room.

Prayer Request

Pray for graft. That Lynette's cells will find their way to their new home in me and get to work. As long as you are at it and if it isn't asking too much. I want a graft without a full body war. Host vs. Graft disease takes many forms and is grueling. Pray for graft and gracious welcome. Co-existence. Embrace. Love at first sight. Delirious recognition that my body is home and a good place to raise a family of more blood cells.

Henri Nouwan says that welcome is "making room for the other." We did not practice Nouwan holy hospitality when Lyn's marrow arrived in my body. We waited two days after transplant --until her T-cells showed themselves and infused mega doses of chemo to beat down her most agressive cells. After the carnage, we hope to let by-gones be by-gones. Can we get along famously, even though I wiped out her front line? Can her marrow trust me?

I'm thinking forgiveness inside my body in this place for me in this time.

Code Red

You would think they would tell us. There was no warning. I was in the hall saying goodbye to Kathy LeClair and all the doors locked down. Slammed like some Harry Potter spell. The air seemed to go out of the place. I hadn't realized how much light came through the corridor doors until they were shut. Strobe lights started flashing. A nurse told me to go into my room and shut the door. All the doors in the hall to all the rooms were shut. I know because I peeked out. "Code Red, floor 2, floor 3," the intercom repeated. A few minuets later, "Code Red, floor 2, floor 3, floor 4." The announcement told me the fire was getting closer to floor seven. I could hear siren outside. I picked up my bible and cell phone and was about to go out the end of the hall exit doors when a nurse came by. "I can walk out of here. I don't want to burn in my room. Tell me what is going on." "It's a drill," he said.

Walking After Midnight

About 2:00 a.m., I went for a walk on seven east. I carried my kayak paddle. Can't carry the paddle straight up like a staff because it wackes the exit signs. The end of the hall is not wide enough for a full pivot so I carry on the right, get to the wall, make the turn, transfer paddle and carry on the left. One lap and I was tuckered.

Silent Retreat

Can't talk. Pad by the bedside to write notes to nurse and doctor. Quit eating. Meds are coming I.V. Suction wand by the bed so I don't choke. Swallowing comes at a pain price. Predictable portion of process when the mouth and digestive lining is needing replenishing and there is nothing in the body to replenish the normally fast dividing cell fields. Condition called Mucasitis. When I'm quiet, my mouth and throat do not hurt. Best thing I can do is just be quiet. I love silent retreats. Helps me to listen.

Woman in High Heels

Blood draw results provide a window on the world of what is happening inside. When I was in Green Bay going through induction chemo, I got the image that my body was a woman in high heel stilettos walking on a raised median dividing the Champs Elysees in Paris. I have never been to the place but I imagine heavy traffic and the center line precarious. The oncologist worked a balance act trying to keep my body from falling into the on-coming or going traffic. My body fell into danger more than once with consequence.
At the University of Washington Hospital, the physicians have me just where they want me. Doc. Heather Cheng has a favorite saying "we're not going to chase it." Sneakers on the wide path. Traffic noise is absent.


Have you ever seen a 59-year-old, 5'7", 131 pound woman hover? I'm not dizzy and I'm not having an out-of-body experience but I feel that my body is hovering. My white blood cell count is not traceable. Total Neutrophils, Lymphocytes, Monocytes, Eosinophils, Basophils, Immature Granulocytes and a list that seems to take a full page reports "too few cells to evaluate." The killing worked. Pray and wait for the graft.

Tuesday, May 11, 2010

No Sneeze Zone

Healthy white blood counts are expected to be between 4.3 - 10.0. Today, my white blood count came in at 0.24 THOU/uL. The doctor says I'm right where he wants me. My capacity to make blood has been destroyed and now we wait for the graft. Don't sneeze.

Kathy LeClair

She is an Irish woman married to a French Canadian. The outcome of such a match is the exquisite freedom to laugh past a cordial ho ho and great sense of humor. Kathy is the only person I know who is so refreshed by Sunday go-to-meeting that her countenance chances. She is home churched. That is how I first met her. Bob Eldridge drove with me through a blizzard to her home in Two Rivers, Wisconsin for church. I had all six children with me. Kathy made room for us on her living room floor for the night. Her husband Gene brought out the legos.
I didn't know Kathy very well when she said she was coming to Seattle. She made her commitment, April 24 through June 1. Canceled a trip to Ireland to be with me. Parted from Gene to be with me and the girls.
Kathy has carried my bags, washed my clothes, tucked my girls in, shadowed me at appointments, learned to change the dressings. Taken bus, taxi, shuttle, hitch-hiked and walked to be by me in the hospital.
Kathy always carries the scriptures in her shoulder bag. I have never seen her without the good book alive in word, manner and deed. You may have heard about the hands of Christ. Kathy has the eyes of Christ. Kathy looks with mercy and shares the yoke.


Kayla had a talk with her stuffed animal. She came out of the huddle saying "Lily wants to stay here (hospital) with you."
"How can that be?" I objected. "When Lily first came I left her in the plastic shopping bag in the second drawer of the bedside table. She waited for you."
"Mom, Lily wants to stay right here with you."
So, the littlest (7-year-old) daughter makes the big gift. Takes my gift to her and hands it back. Names the soft stuffed carmel pug Lily, hand letters a collar for the dog from hospital supplies and writes our Washington Island telephone number on the band in case of loss.
Scratch behind the ears. Nose to nose. My hand on Lily's soft fur. We sleep in the locked down ward when lights go out.

Hippa Laws Bah Humbug

David (yes, his real name and he should know because the nurses come around frequently reading from our arm bracelets printed with name and birthday and asking if it is still true) lives in the lead-lined room at the end of the hall. No body can touch him. When his wife comes to see him, she sits outside the lead shield that bars the door and visits from a folding chair against the farthest-away-from-David's door wall in the hall, as far away as a body can sit and still be inside the building. Pregnant nurses aren't allowed to tend. David isn't allowed out.
I couldn't sleep last night. Went walking about 3:00 a.m. and wondered if David was up and would call out in his cheery Brit voice, "And, how are you dear?" In his darkened room, David was sitting on the side of his bed, David asked just that. "And, how are you dear?" "I can't sleep," I admitted. "Chemo is no walk in the park," he replied. "How 'bout you?" I asked. David cursed his headache. "Did you call the nurse?" "She hasn't come," he replied.
From my perspective, it is possible that David was hurting so much that he may not have known if he had called for help or not.
I walked to the front desk and made my report for David. Then, I was able to sleep.

Monday, May 10, 2010

Mothers Day

Cyclophophamide, Mesna, saline, anti-nausea some drug or another and anxiety. One could think the worst until Micala, Korrina and Kayla arrived with hand made paper flowers. They stood together at the window in Room 7212 and serenaded me with Taylor Swift "You Belong with Me," "Baby" by Justin Beaver, "Exceptional" by JoJo, Party in the USA by Miley Cyrus. The grand finale was "One Time" by Justin Beaver: "Your world is my world, your fight is my fight, I love girl, girl, I love you. My breathe is your breath, your hurt is my hurt... always making time for you.... Girl, love, girl I love you. " Happy Happy Mother's Day.

Sunday, May 9, 2010

Birthday Boy

Shammond's birthday was yesterday. He is with dad on Washington Island. Joe tells me that Shammond made his own birthday cake, created and sent his own birthday invitations to friends, and made lunch to take. "Do you need any help?" dad asked. "I can handle it," said Shammond.

A newly minted 11-year-old who can handle it. Sounds sad to me. Where is mom when a fuss needs to be made? Who cuddled? I called on the phone and sang Happy Birthday. "Now, let's see, you are twenty-five years old today, right?" Wrong joke. I could hear it in his voice. Mom may be able to miss the birthday but she had better remember how old he is. No laughing matter.

Line Upon the Map

He drew a line upon the map and he said "Valerie look at that," its the Two Continent Journey. Paddling from the Arctic Ocean to Cape Horn began as Verlen dared to ink ballpoint pen red connecting waterways in the Western Hemisphere. Vision on paper. I needed a visual cue for transplant.
The day after I arrived in Room 7212, I walked to the front desk on the 7th floor and asked Robert, the go-to-guy, for blank paper, markers and tape. Two shades of a blue and a black were the only colors he had to offer. Perfect. I used the blues to make waves along the horizontal bottom of each page. Child-like, stick-figure waves. While I drew humps from one page to the next, left to right, I corrected myself from making the humps too humpy (perhaps that would signal a rocky road). As I drew waves on twenty-five pages, I intentionally softened each amplitude from erupting to tranquil while still flowing and not flat-lined. Above the bottom border of waves on each page was a blank space. For three pages of waves, we didn't need a filler in the blank space. Just wave began the visual concept of what had come before, what was flowing in to my arrival. On panel four, I wrote "-7 -6 -5 -4 -3 -2 -1" filling the blank space above the wave with numbers. The blank space on panel five became a large two-toned blue heart riding the waves with "Day 0" penned in the center of the heart. Panel six reads "1 2 3 4 5 6 7 8." Panel seven reads "9 10 11 12 13 14" (penned) above the waves. The hundred-day count continues page after page, wave after wave. The pages are taped at the top of the room walls, butted against the ceiling, beginning over the window and heading toward the door at the other side of the room. Twenty-five 81/2 x 11 horizontal sheets over lap into a long continuum.........97 98 99 then 100 written in big letters, riding a wave on its own page. The art project doesn't stop with the number 100. Two more pages of waves with blank space above continue the map over and out the door. The continuum is honored. The where do we go from here is acknowledged.
I look up at the chart every day. Today is day 3. 97 more to go. Dr. Collins referred to the chart when he came into the room the first week. The chart is a reference point for where we are going.
Thank you Chris, for coming in and taping the map higher than my height and giving me something to reach for and live into. Do I want to cross off the days as they are finished? No, don't want to negate one day. God's grace gives each one.

Fons meets Sweet

Leonard Sweet came by to visit yesterday evening for exactly one hour. No socks. On his feet no socks looked unobjectionable. I don't think he was making a fashion statement. No socks on Len looks like the closest thing to bare feet in sandles on the dusty road.
He cared enough to come. To visit the sick. He talked and listened. It was as if he had come and we were spreading a picnic. Then, before he left, his prayer gathered the pieces of our conversation up into the whole cloth as if he were taking the picnic table cloth from all the ends until all the dishes, utensils, crumbs and morsels were encapsuled in the fabric bundle and handed over to God.
Len taught me sign language. The finger placement and movements for "united," are finger to thumb on each hand, right hand locking circle with left hand, then rotating the two-handed clasp as if stirring the pot. Len motioned "Methodist," by rubbing both hands, palms flat, together. Even without saying, the motion speaks "oh boy, oh boy, almost here, here it comes" anticipation. A fire of enthusiasm starts with the rubbing of palms. The enthusiasm in me has not quit. I rub my palms with glee and am reminded of the spirit kindled.

The Montlake Cut

Crew teams are sliding past on the Montlake Cut. I see them out the window. Working together. There is a voice inside me that I had best get out so I can get past it. Rescue me. Joe, stop holding the fort and hold me. Joe, stop planting flowers and plant kisses on me. Mom, come by my bed like you did when I was a little kid, bring the 7-up and sit here by me.

Saturday, May 8, 2010

Rocky Roads Paved With Prayer

Day 2, today. Called a "rest" day in the protocol. Day 3 and Day 4 includes 50 mg/kg/day Cyclophosphamide. Total Cyclophosphamide = 100 mg/kg. The purpose of Cyclophosphamide is to minimize Graft vs. Host desease -- basically reign in Lynette's T-cells before they search and destroy my body. While the Day - 6, -5, -4 and -3 lethal doses of Fludarabine and Buslfan destroyed the capacity of my body to make blood, the blood I have in my body is still circulating. The anti-bodies in my blood were low enough at time of transplant to make no fight with the mis-match of blood type coming in.

My counts will continue to drop. As counts drop, chance of infection increases.

In one form (Stage 1-4) my G.I. system will experience sores and ulcers, patients are fed with tubes, receive medications through I.V. and live with a pain pump for a time. Worst case is breathing constraint which in rare cases necessitates a breathing tube.

A waiting period continues until the graft takes hold and counts began to rise. When counts rise the concern becomes Graft vs. Host disease which takes many forms.

We have come a long way and have a long way to go.

Please include me in your prayers. As I write this, I want to stand on my hospital bed in Room 7212 and yell as loud as I can "call every prayer chain you know. Contact the prayer warriors. Mention my need to your neighbor on the street." If Paul Revere were present and the horse pounding the dirt, I would offer a bucket of water for the steed, then slap the four-legged's rump and yell "go as fast as you can, spread the word." Pray because my life depends upon it.

The nurse came in while I am writing this. After taking my vital signs, she asked "is there anything I can get for you?" I was blogging for prayer so I didn't ask her for crackers or ice. "Prayer, " I said. "Would you like me to call a chaplain?" she asked. "Yes, for tomorrow morning." "Thank you."

I can help (in prayer) too. You (I'm not just asking others to do it for me) don't have to do it all. "I pray for sufficient courage and stamina to survive the coming trial and I pray for mercy. Heal me Jehovah. Hide me 'neath your wings until the death angel passes by. Be my dwelling place. As I am changed throughout treatment, lead me to be faithful. " I dare not say "teach me to be faithful, least the lesson be too hard for me to bare. Lead me. I will follow." Amen.

Friday, May 7, 2010

Cue The Cello

Susan W. holds me in the Light."
Marianne announces her presentation of "Why We Quilt" in Lansing, as a fund raiser for transplant-related costs.
Susan R. sends CD player, music and angel rock, plus coaching wisdom for staying in the game.
Alison models healing and practices prayer and dreams for my behalf.
Kathy L. cooks for Micala, Korrina and Kayla and tucks them in at night in rented beds.
Kathy G. brings the girls to see me in Room 7212 at the hospital.
Beth takes the girls to dinner.
Mark photographs the girls and decorates my hospital room with smiling images.
Corrine brings and serves communion.
Karen brings books.
Debbie brings her knitting.
Chris delivered the kayak paddle.
Lee, Chuck, Ric, Mark, Joe, Len and Susan serve as ministry advisory board.
Joseph L. takes care of Shammond, Steve and Joshua, holds the fort and plants flowers.
Carol, Connie and Bonnie prepare for paddlers for Year II Island event.
Estelle calls to sing and say healing prayers.
Lynette offered her body to be drilled.
Doctor Heather Chang harvested the perfect HLM tissue type related match.
Erika, RN, pumped my central line with drugs to prepare my body to welcome the infusion.
Someone handed me the warm bags of unprocessed bone marrow brought to light.
I held one of the bags to my cheek and cried.
Lynette gave the life giving gift.
Kathy and SCCA chaplain engaged in the blessing of the stem cells.
Erika hung the four bags of blood on the IV pole/transom and began the drip.
Jackie chose this perfect timing to sit in the hall outside my open door and play her cello.
Nurses came by with a birthday card for me on this my new birthday.
Jackie quit Bach for a moment and played Happy Birthday on her cello.
Valerie had cookies and ice cream before the party was finished.
Erika returned to the room every 15 minutes after each new bag was accessed to take vitals.
A nurse came into my room every hour for the 14 hours of infusion to record my vital signs.
Infusion of transplant took about 14 hours.
1,688 ml of Lynette's marrow was received through my central line into my body.
This birthday girl is a lucky duck.

Thursday, May 6, 2010

Blessing of Stem Cells

Blessing of Stem Cells for Valerie Fons on this 6th Day of May, 2010
University of Washington Medicine & Seattle Cancer Care Alliance, Seattle, Washington

Stem Cell Blessing

We gather today to celebrate a new beginning
a time of special grace for Valerie
and for those she holds dear in her heart.
We have come to give thanks for the
Gift of these cells which have been given by her sister
Lynette Kay Fons, for the gift of life
and for all the ways in which Valerie has
already been healed and blessed.
We have come to ask that these Stem cells
be blessed by your holy tenderness and compassion.

Let us pray. God of Abraham, by your mercy and the power, we ask you to bless these Stem Cells.

Lord, hear our prayer
Infuse them with your strength.
Lord, hear our prayer
Infuse them with your consolation.
Lord, hear our prayer.
Let them heal all in Valerie that is in need of healing.
Lord, hear our prayer.
That each cell may be filled with forgiveness.
Lord, hear our prayer.
That each cell may be filled with hope.
Lord, hear our prayer.
That each cell may be filled with surrender.
Lord, hear our prayer.
That each cell may kindle the fire of your love in her.
Lord, hear our prayer.
That Valerie may love you with all of her heart, mind and strength.
Lord, hear our prayer.
Lord have mercy on us, in the name of your son Jesus Christ.
Lord, hear our prayer.


Breath of the living God, fall afresh on her
Breath of the Living God, fall afresh on her
Heal....Her...Mold...her. Melt...her...Bless...her
Breath of the Living God, fall afresh on her.

Closing Prayer:

Lord we offer up to your hands any fear or anxiety that Valerie or any of her loved ones may be feeling. Take that fear Lord, and in its place fill Valerie with your peace, the peace that the world can not give. Protect her from fear and anxiety and let her whole body bathe in your healing arms.

We pray in gratitude for the gift of these stem cells. We pray in gratitude and ask for blessings for all the staff who have or will be part of her care.

O Lord, look upon your daughter and servant Valerie. touch her with your embrace. That she may have the grace to bear this cross, to bear whatever pain or discomfort may come. That it may sanctify her. That is may bear fruit. That in it your name may be praised and glorified.



In 1988, I was evacuated from Ushuaia, Chile, to Houston, Texas, after suffering a head injury when crashing in the surf off the coast of Argentina in the south Atlantic. Following a neurological examination and head x-rays, the doctor said "Quit the trip." The following excerpt is copied from my paddling narrative from the Arctic Ocean to Cape Horn (1986-1989). I was faced with a decision. Would I return to the expedition route or stop?

.,....The Cape Horn vision had been etched into me for the past 20,000 miles.
My parents were worried about loosing me. The pain of my indecision was not the fear of dying. Before the expedition started, I had come to terms with the possibility of not making it back alive. Even in the familiar home of my parents, so much of life as I knew it was already gone. The expedition was the practice of dying and becoming reborn. Paddling from the Arctic ocean to Cape Horn was intense engagement in the struggle which consisted of "Hit the wall, then push body and emotions past the wall." My canoe remained constant while I felt like a battering ram, too stunned to grasp the promise of a broken seed overcome by growth.
My attitude was a big factor in my decision. Call it stubborn but I could not give up. I have heard people say death is a letting go of life but I don't believe them. Perhaps there is comfort in sitting by the bedside of a loved one and saying, "You can go now." But I want my advocates to cheer me to the finish. I want to meet death by not giving up or letting go. Without knowing all the answers, I want to keep hanging on and giving all until the passage is granted. I want to welcome death rather than submit to it.

Blessing Service for Valerie Fons - May 4, 2010

For the Dying of One Immune System in Preparation to Receive New Life, SCCA Chaplain Jennifer offering and presiding.

Opening Prayer

Words of Commendation
Valerie has prepared for this day, and with the help for the medical practices and treatments, she is here to give thanks for and say goodbye to her immune system.
God of Compassion and Love, You have breathed into Valerie the breath of life and have given her the exercise of her mind and will. In her frailty, she surrenders all life to you from whom it came, trusting in your gracious promises through Jesus Christ our Lord.

Prayer of Thanksgiving
Together we thank you for the many blessings her immune system has allowed in her life.

For her many years of energy and health,
We give you thanks, Lord.
For her essence and ability to survive in the face of great adversity,
We give you thanks, Lord..
For her strength to travel far and wide, to raise children, and serve in ministry,
We give you thanks, Lord.
For all you have done in and through Valerie,
We give you thanks, Lord. Amen.

Scripture Reading:
For new life to have space to grow, sometimes significant changes must take place. Jesus spoke of this using the analogy of old and new wineskins. He says this in Matthew 9:17. Neither is new wine put into old wineskins; otherwise, the skins burst, and the wine is spilled, and the skins are destroyed; but new wine is put into fresh wineskins, and so both are preserved.
In order to receive and hold new wine, new wineskins are required. In this case, in order for Valerie to receive new life in the form of physical health, a new immune system is required.

Litany for the Dying Immune System:
Leader: Word of God, we affirm that you are the beginning and the end of all life.
All: Risen Lord, help us to trust in your promise of life everlasting.
Leader: Lord God, you have promised that our lives will be changed and transformed.
All: Good Shepherd, death in any form is hard to accept,l but help us to understand that life;s journey leads to you.
Leader: Source of all goodness, we give you thanks for the blessing that you bestowed upon Valerie through her immune system.
All: Gracious God help us to remember the blessings of her immune system, and prepare her to let her immune system go free.
Leader: God of all Creation, strengthen her as she releases this immune system today.
All: Merciful Lord, help Valerie to accept this parting and to trust in the promises of new life.
Leader: Now, may your immune system go in peace.
All: Amen. We believe in your Word and the eternal life you have promised to us. We pray that we may trust in these promises today and always.

Scripture Reading: Revelation 21: 1-5a
Then I saw a new heaven and a new earth; for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, the new Jerusalem, coming down out of heaven from God, prepared as a bridge adorned for her husband. And I heard a loud voice from the throne saying,
"See, the home of God is among mortals.
he will dwell with them;
they will be God's peoples,
and God himself will be with them;
God will wipe every tear from their eyes.
Death will be no more;
mourning and crying and pain will be no more,
for the first things have passed away,'
And the one who was seated on the throne said, "See, I am making all things new."

Closing Prayer: For hope, openness, and endurance on the journey.

Prayer Requests for May 6, Day 0

. Gracious receiving of Lynette's stem cells and welcome within my body.
. Lynette's full and speedy recovery from the rigors of donating a quart of her bone marrow.
. May the protocol and regime chosen for my body work for healing.
. Sufficient courage throughout this time of challenge.
. Support and accountability to see beyond my condition and self interest.
. Deepening relationship with God, me and others including you dear one.
. Comfort and care for the care givers.
. Protection and care for our family.
. Peace on earth.

Boring and Uneventful

"That's the way we like it," the nurse explained. "Boring and uneventful."
"You have to know that I'm not that kind of a person," I replied.
The hospital speaker erupted. "Code blue room 5..." "Code blue room 5..." "Code blue room 5...." "Dr. Kincaid call ....... S.T.A.T." "Dr. Kincaid call ... .... S.T.A.T." The announcement repeated several more times.

Wednesday, May 5, 2010

Major Mis-Match

My right knee buckled while walking in the hall last night. I didn't fall but I felt it. My experience from St. Vincent during induction taught me that I need to listen to my body and appreciate the condition of my muscles as they decondition through hospitalization. I reported the incident. I'm now on "watch." Can't walk without a nurse or trained companion. This cramps my style because nurses don't always have time for a walk. I'll try to be persistent. It isn't easy with decreasing blood counts that wear me out. The labs are one indication. Another tip off is the increased heart rate. I came into hospital with a pulse at about 70. Through the chemo treatment I remained about 80 - 85. Now, I'm into the 95+ because the heart has to work harder with lowering counts. We have just started as we head for maximum bottom before transfusion. So, I wake up this afternoon. The nurse is at bedside taking vitals and I tell her what I am experiencing. "This is all to be expected," she explains. "Well, tell me more about what to expect," I encourage. "You told me it would be a busy day tomorrow," I continue. "What's on the agenda? Talk to me about Day 0."
"You will have your weekly chest x-ray and a change of dressing on your central line. You are really lucky that you have a perfect match with your sister. Only about 1 in 25% are matched and the related donor results are so much better than unrelated," she explained. "What do you do about me being O+ and Lyn is A+?" I ask. "That is a major mis-match," she explains.
"What do you mean a mis-match," I demand.
"It is just going in," she continues. "I've never done a major mis-match on blood type but other nurses have and the doctor's orders will be followed."
"Why didn't someone tell me? I thought I was a perfect match with my sister. This is the first I've heard major mis-match." I say.
"The mis-match is just going in. Every one is so different with what information they want. We forget because we do this all the time," she explains.
"Well, I'm not going to do this all the time," I say. "I've had blood transfusions with Tylenol and benedril before, what else?"
"Possibly hydrocordisone. The doctor will write the orders. I haven't seen the orders yet.
"I really want to know information -- put that on the chart."
People are praying for me and want to know what to pray for, how to pray. I want to pray and prepare myself to receive that which is not usual and potentially dangerous." My O+ is the universal donor but now my universal donor -- giving to others is being asked to receive the gift of life from another. I want to accept.