Wednesday, June 9, 2010

Divine Intervention

Would you believe that the first question on my list when meeting with the tan (my assigned color designation) team yesterday was "I want someone to check the original slides from my bone marrow biopsy. There are so many things are are being done differently here in Seattle. You knew to give me Mesna which protected my bladder through chemo. In Green Bay, my bladder became incontinent through treatment because no Mesna was given. You knew to give me Ursodiol to protect my liver. In Green Bay, I became jaundiced, my eyes turned yellow and the doctor confirmed drug induced liver damage because no Ursodiol was mentioned nor given. I heard that I had e-coli in the blood when the ambulance took me to Green Bay on Nov. 9. Maybe it was the blood infection that was really happening and this leukemia stuff was all a mistake. Even here at the University of Washington Hospital, there was a day when a nurse came in and said that one of my blood tests showed rods so a specialized antibiotic had to be started immediately and then later the same day, a different nurse came in and said the blood test showed no rods and the antibiotic was stopped. This is not denial, I just want to make sure that I really have or had Acute Lymphoblastic Leukemia."
Pat, the tan team nurse, didn't flinch. She went to the computer and pulled up my charts and started printing off the surgical pathology report. She handed it to me before I left. I carried the pages with me that afternoon to the bone marrow aspiration and biopsy center and asked for interpretation. Following is a portion of what I heard as the medical words were interpreted into lay language;

Just how sick were you? 80 to 90% of your bone marrow and the bone was so full of cancer that the cancer cells were freely circulating in your blood showing marked pancytopenia which means that the cancer had over taken the blood cell making capacity for red blood cells, white blood cells, platelets and the generation of the healthy blood you needed to survive. The e-coli and other infections probably came in because the immune system was so depressed by the abundance of cancer in your system. The diagnosis is Acute B-cell lymphoblastic leukemia.

"How were you diagnosed?" asked the biopsy tech.

I started feeling tired in summer. I quit my habit of getting up in the mornings while my kids were still sleeping to paddle. In September, I had a physical at the Washington Island Clinic with a blood test that told me my cholesterol was fine. Now I know they didn't run a CBC that would have given us the blood look. By October, I was laying down most of the day and having a very hard time getting up. I returned to the clinic and told them about my fatigue. The media were in a frenzy about H1N1. "It's viral," I was told. "There is nothing we can do. Gut it out." Woe to anyone who tells even an aging athlete to "gut it out." We do. I returned to the clinic twice more and called them too. It's viral, there is nothing we can do. Gut it out," I heard repeated. I did. When I flew to the American Canoe Association Annual Instructor training to present as the key note speaker, I had to lay down on the floor in the back of the auditorium with my head on my lap top until the introduction for me was made and it was my turn at the podium. I got up and gave my power point presentation, then retreated to my room. The next day, when it came time to go to the airport, I was too weak to leave the hotel. I held up in the hotel for two days before I had the energy to get on plane for home. On October 31, I catered a wedding at Bread & Water. Friends helped me. I was slugg-like. November 8, I went to the Sturgeon Bay, Door County Memorial Hospital and said "Now I'm short of breath." "You have been laying around too long, go take a walk," I was told by the clinician. I drove home and stopped at the grocery store on the way back on Island. The next day, Joe intervened and saved my life. He took me to the emergency room saying that all that night I had slept in a sub-human like ball making noises that no human should have to make. I remember getting in the car and covering myself with a coat. "I was just there at the hospital yesterday," I protested. At the emergency room door, I was put into a wheel chair. The attending was a paddler who had been at the Washington Island Canoe and Kayak Event in June. He was one of the marathon racers. He knew me by name and took a blood test. Upon arrival, my hemoglobin was 3.7. HCT which I believe is Hematocrit was 16.4, White blood cell count, 0.9 and platelets were 13. The regional oncologist from Green Bay just happened to be at the Door County Memorial Hospital that day and came in to see me. He made the order for an ambulance to take me to St. Vincent Hospital in Green Bay. At 7:00 p.m. that night, he came into my hospital room to take my first bone marrow biopsy. By Thursday, November 12, the results were back. Acute Lymphoblastic Leukemia. Induction chemotherapy started Friday, November 13.

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