Thursday, April 29, 2010

T'was the Night Before Inpatient

What does one do the night before entering the hospital for transplant? I took Micala, Korrina, Kayla and Kathy out to dinner. Necessity dictated cheap and close. We walked from the Pete Gross House to a neighborhood grill. After dinner, as we stood at the curb walking home, the rain started. Sunset over the Olympic Mountains kept the sky bright. "There has got to be a rainbow," I said as I looked up to scout. There it was. In the eastern sky -- the big arch of promise.

It Can't Get Much Better Than This

"How are you young lady?" Dr. Petty asked as he walked in. That's a great question to ask as I am laying on an exam table with an IV in my left arm, surgical bonnet over my knitted head warmer,warming blanket over my knees and the anticipation of my heart being tunneled and juggler vein punctured to install a Hickman central line.
"I'm o.k.", I replied. I wasn't lying. "I don't want to be put to sleep for this procedure.'
"OK," said the Doc.
"What is your infection rate?" I asked.
"One percent. The lowest infection rate in the world."
A man named Hickman invented the Hickman central line catheter to the heart for blood draw and transfusion. He was in Seattle. Dr. Petty studied with Hickman and learned how to install the line from the one who invented it. Dr. Petty installed my Hickman. I stayed awake throughout the procedure and opted for a local rather than general anesthetic.
Sample of banter went like this:
Petty: I'll give you just ten more questions," he said to me.
Me: You are stingy. Usually a person gets twenty.
Petty: You get ten.
As we went along, he reminded me that he was counting!
Petty told a joke.
I didn't laugh. He wondered why?
Hilarity was in the operating room but I dared not laugh. Would the rising and falling of my chest with laughter complicate the procedure? I held as still as possible, chest up with a block of riser under my shoulders and neck turned toward the wall. 90 minutes of operation. At one point, what felt like Peter Rabbit thumping across my chest happened though I was so draped that I could not look. When I was asked to take a deep breath, I was awake to do it. Cutting, tunneling, stitching. Out with the Power Port and in with the Hickman. At one point, Dr. Petty said he was king of the room. At first I was concerned about Petty's take on his role until I recognized that Petty was not present to abuse his power but claim and use his potentate position to dictate and supervise the proceedings. "Would you like to see what it looks like?" he asked me at the conclusion of the operation. "Sure." He sat me up with one hand helping lift from behind my shoulders and his other hand taking mine. Beamed from the x-ray screen was the loop of central shaped like a robed body with head bowed in prayer. I went out of the operating room singing. Wouldn't have missed being awake for Hickman placement for the world.

Tuesday, April 27, 2010

Stay With the Boat

"I'm a good candidate for cancer and treatment," I keep telling myself and others.
A history of abuse taught me that being victim doesn't work. Paddling from the Arctic to Cape Horn taught me that quitting is not an option. Foster and adoptive parenting required transparency and team work. Ordination mandated dissection with the Board of Ordained Ministry, personal reflection and prayer.
Life experience can become a road block. When I am looking for what I already know, expecting and seeking the familiar, I get stuck. Ground Hog Day can not be operative.
The book titled "Follow Me," explores relationship with God in drawings and few words. A character is fishing in a boat. He hears the voice. "Follow me." He ignores the voice and continues fishing. "Follow me," says the voice. He ignores. The boat springs a leak. He plugs the leak with his toe. "Follow me." He continues to disregard the voice. The boat pops another leak. He plugs the second leak with his other foot. "Follow me." He gets angry. The boat sinks. "Get out of the boat," says the voice. Eventually, the man gets out of the boat and walks on water. The line drawings in the book lead the reader through the many expressions of the man leading to surrender. His figure is tip toeing in glee over a humped wave squiggle line across the end page. Both arms are out stretched as if he is tight roping.
When I received my diagnosis, I launched from my life and got out of the boat. April 26, I got back in a boat, paddling on Shilshore Bay and aiming the bow toward the Olympic Mountains instead of following shore. The day was holy. No doubt. Puget Sound glass calm. Chris Cunningham offered transportation, boat, paddle and companion. My clinic schedule cleared for a free morning. This was the only window of time available before my Hickman (central line) is put in tomorrow morning at 7:00 a.m. which makes the possibility of getting dunked not an option. On the water, I closed my eyes. Gulls stream over head. My kayak rides the inhale and exhale of God felt through gentle swells of salt water. The cradle rocks.
I was late for my blood draw appointment at 12:45 p.m. "Don't access my port" (takes too long, just poke). The tech tried the right arm. No draw. He started fishing. "Take it out," I instructed. Tried the other arm. No draw. Started fishing. No draw. I want someone else to help," I said. Paddling gave me the confidence to make the call with no apology. A woman came in and tapped life flow the first poke. I got out of the blood draw chair helped myself to juice -- I know where they stash the juice by now. I made the data conference, signed consent, went on for a lumbar puncture with chemo inject and capped the clinic afternoon in mammogram press.
Tonight I followed instructions and scrubbed in preparation for the Hickman tunnel to the heart. Meds down the hatch. "Stay with the boat." Before I could sleep, I distinctly heard the call. Every kayak instruction class I have ever been in says that when capsized, stay with the boat. A kayak paddle is going to the hospital with me.


"I feel so good," Why does my gratitude sound like protest? "Why can't we just believe the cancer is over." I had the evidence -- Last night, I walked from the Pete Gross House to the Space Needle." Chemo was pulled the day after Easter. Bone marrow biopsy and aspirations are clear of detectable cancer. Spinal fluid from lumbar puncture is clear. My body has been bathed in prayer. God's miracles have blessed me over a life time. The miracle could be operative now.
"Of course, you have a choice. All transplants are optional," the doctor said on our first meeting at the Seattle Cancer Care Alliance, April 16.
I re-thought through this again. Two weeks of intensive, some invasion tests. Between my body inspections, I met and talked with a woman who had endured transplant yet the cancer came back. One completed transplant was packing his car to return home. One on his second transplant. The 20 - 25% of those who don't survive transplant spoke as loud as the ones I met face to face.
April 25, I read through the final results of the International ALL Trial (MRC UKALL XII/ECG E2993) one more time. Though all the clinical and scientific language did not make sense to me, the last paragraph was unmistakable: "Sibling donor allogeneic transplantation is the treatment of choice for adults with standard-risk Acute Lymphoblastic Leukemia, (ALL) in remission providing the greatest chance for a long-term survival. "
"Did you bring the consent form," Paul McDonnell, M.D. asked at our Monday, April 26, 2010, data conference?
"I can't find it," I confessed.
"Here it is," he offered, after looking through my stack of papers.
"But it says 'research clinical trial, I didn't know this was it" I explained.
"They all are (research)," he said. "Sign here." I did.
The doctor was tidying the pages to insert in his file when I stopped him.
"There is a place for you to sign too," I dared. My consent was no empty, one-sided ritual. "I want to watch you sign." He did. I needed his commitment. We shook hands.
Thursday, I go inpatient. We will begin the take-down. Two drugs to search and destroy my capacity to make blood. We eradicate my immune system. One of the two drugs is nick named "liquid radiation" by one attending physician. An additional drug is used to suppress seizures since one of the side effects of the first two meds is seizure. Blood tests every four hours to monitor.
I expect the hospital room to be cozy. Hope for a view. I covet your prayers.

Sunday, April 25, 2010

More like Jesus

I was in the living room at my parent's house in Houston when my mother handed me the blue Tiffany box. Though it was over twenty years ago, I still remember standing with her and accepting the gift. The red chair with well-worn cushions where my dad always sat was beside me but he wasn't sitting. Dad was standing behind my mother, looking over her shoulder, watching me open the box. Past the white ribbon, under cover and nestled in a blue pouch was a solid silver dolphin, body perfectly formed back to front, arched with tail swish and nosed through a gold ring. The ring was solid gold and perfectly formed as if one could remove the ring and put it on a finger as a bride but the dolphin is the one who had the prize and the ring could not loose.
Of course, I must have said thank you, possibly cried. Instantly, I recognized the pose of achievement. Why wouldn't I see it? I was paddling from the Arctic Ocean to Cape Horn headed for the golden ring. I don't remember other details of the gifting but I do remember a gentle tussle with my mother. "I'm wearing it," I announced. "But it might get hurt," she admonished. "Mom, I'm paddling to Cape Horn," I reminded. "If the dolphin is ruined, so am I."
I paddled the South Atlantic, into Terra del Fuegro, the Beagle Channel with the Tiffany dolphin pinned to my coat. Did my mother know what I only learned today? The dolphin is the totem mammal for the healing professions and ministry. A mother's anointing and confirmation of my call to ministry. At the time, I did not know the spiritual significance of the image. I only saw the dolphin making it look easy while striving, straining, reaching and achieving the golden ring.
So, twenty plus years pass and I have six adopted children. The dolphin rests in my top drawer. One day, I come into my bedroom on the second floor and find a 1/4 inch post of yellow metal on the floor. There were several bits of goldish junk on the carpet and another small piece caught between two floor boards beneath the door. "Someone could hurt a bare foot," I thought as I carefully picked up the debris and threw it away. A few weeks later, I found the dolphin without the ring. There was no doubt in my mind that the pieces and bits had been the ring. One of our children vandalized the gift. I wondered which one of the bunch took my husband's tools ripped and pry ed apart the dolphin's prize and mine.
Working through cancer, it seems to me that the child -- the one never named, the one who would not admit nor accept responsibility set the dolphin free. No longer would the dolphin seek to perform. The dolphin is without necklace, naked, wild and free.