As it became more and more apparent during October 2009 that the last course of Avastin wasn’t working, Laura worried about Anne Mei and me after she was gone. From her bed Laura could see the split rail fence that surrounded the part of our property closest to the house. Some of the rails had become moldy and weathered. A few had even disintegrated to the point that they fell out. I had replaced a number of rails in other parts of the fence, but not the ones outside Laura’s window. I had bought replacement rails, but work, treatment, Anne Mei, and my natural tendency to procrastinate meant that these replacements just sat for weeks in the garage. Finally, on the afternoon I was off for Election Day, I fixed the fence outside our bedroom window. Laura stayed out with me until it was done. Fortunately it was a sunny November day. Even it hadn’t been, she probably would still have supervised the work. Afterwards, she felt quite relieved that she was not going to leave Anne Mei and me with a falling down fence.
The next day the oncologist looked at the latest MRI and stopped the Avastin infusions. He told Laura that her options were to start an older chemo with him or to find a clinical trial somewhere else. Laura made a face at the idea of going back to something that had already been proven not to work. The oncologist gave me a website address where I could search for a clinical trial, without any help or guidance from him. The last kiss-off.
I spent the next two days on the computer and on the phone in our upstairs office. Laura sat behind me in an old, easy chair. Because the room was cold, I put two heavy wool blankets over her, with an electric heating pad under the blankets. The easy chair had wide, flat armrests where Laura could put her mug of tea. Sometimes she dozed. Mostly she listened. After listening to one of my calls trying to get through the bureaucrats at a hospital in New York, she said, “You’re doing this for me.” There was a tone of amazement in her voice, astonishment that I would keep working to get her treatment, even though we both weren't sure that more treatment would do any good. At least at that moment she told me that she knew how much I loved her.
Or that’s what I told myself.
I had the sense that Laura entered the clinical trial more for me, more so that my efforts would not be in vain, than with any belief or hope that the outcome would change. These efforts pleased her, and it pleased her to comfort me by going along with my quixotic quest.
I was able to arrange for Laura to visit the National Cancer Institute the following week to discuss potential clinical trials. In all, we traveled to NCI three times. Each trip had its own story.
For the first consultation on Friday the 13th in November, we planned to drive down the day before and stay in a hotel in Bethesda near NCI. During the week before, however, Laura developed two painful ingrown toenails. We were getting into her Honda CRV to go to the podiatrist when I discovered that it had a flat tire. I could have just changed the tire, but I didn’t want to drive down to Maryland with no spare. We took our older Accord to the podiatrist. Then I tried to get the flat on the CRV fixed before we needed to leave. Every place I went to was backed up. We would have had to wait for hours to get the CRV back. If we waited too long, we’d hit the D.C. evening rush hour. I decided to take the Accord, even though it was older and smaller. Now we had to deal with driving rain all the way through New Jersey, Delaware, and Maryland. Fortunately Laura slept through most of the trip, even through the near collision when some idiot suddenly pulled out in front of me as I was doing 70 mph in the third lane despite the poor visibility and rain-slicked roadway. I thanked any number of saints, angels, and bodhisattvas when the anti-lock brakes worked.
Our main reaction to meeting the doctors and nurses at NCI was “We’re not in Kansas any more.” For researchers, they were the most caring and most informative cancer specialists we had met so far, with the exception of a few nurses at the big city medical complex that had been treating Laura. The chief of the Neuro-Oncology Branch of the National Cancer Institute gave us the first clear and complete explanation of what glioblastoma multiforme had been doing inside Laura's head. Whatever the outcome of this clinical trial, we felt good about coming to NCI.
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Not right, nor orderly.Non-Fiction
The phrase "not right, nor orderly" comes from John Donne's poem, "An Anatomie of the World," written on the first anniversary of "the untimely death of Mistress Elizabeth Drury," the 14 year old daughter of his patron, Sir Robert Drury. The poet u...