From First Symptoms to Diagnosis

On October 26th, 2013, a typical, beautiful, sunny Denver autumn afternoon, Leslie and I walked up to a Halloween street fair on 32nd Avenue to meet Alison, Sam, and Ainsley. Ainsley was dressed as Jessie from “Toy Story”, and Alison was eight months pregnant with Elliot. We had been there for an hour or so when I looked around and didn’t see Leslie. After searching for a few minutes I found her wandering a bit disoriented through the crowd. We talked for a few minutes and she seemed OK but a little distracted, so we decided to walk back home. I had to point out curbs and intersections to her, but after she took a long nap she seemed fine. She had no more episodes for the rest of the year.

Some time in January Leslie casually mentioned that lately she had been bumping into walls and doorways on her left side that she had not been noticing as she passed them. She’d had Lasik surgery the previous year, and she wondered if she might need to see the ophthalmologist because perhaps she needed further vision correction. When she continued to bump into things she made an appointment. The ophthalmologist, on February 3rd, found that she had almost completely lost her left field of vision with both eyes, so he immediately referred her to a neurologist. This was a Monday. On Thursday, the day before her scheduled MRI, we agreed to meet for dinner at a local restaurant after work. We enjoyed our dinner and joked about the good news we anticipated getting the next day.

After dinner we drove home separately, but I became concerned when, twenty minutes after I arrived, she still had not. When Leslie finally pulled into the garage she was unaware that she swiped the left side of her car against the garage entrance, but came into the house concerned that she had gotten disoriented driving home and had found herself several miles out of her way before correcting her route.

The next day, after the MRI, we were told that Leslie had a brain tumor that was most likely a glioblastoma (GBM), and would require surgery. A biopsy would tell for certain if her tumor was indeed GBM or, less likely, a tumor that had metastasized from a primary malignancy somewhere else. The neurosurgeon told us that the second scenario would offer slightly more hope, since it would be more treatable than a GBM. In the mean time, we did our best to carry on as usual.

We looked into several clinical trials on the assumption that the diagnosis would be GBM – some that we researched on our own and quite a few that were forwarded to us by Deb, Leslie’s sister in law. Leslie determined that none looked very promising, and all looked like she would have to sacrifice her quality of life to be a subject in an experiment that would not really benefit her. She opted for the current standard of care/best practice that Kaiser Permanente Colorado offered.

We had previously bought tickets to see Midori perform with the Colorado Symphony on February 14th, the following Friday. Neither of us wanted to go, but we hoped that hearing her perform Mendelssohn’s Concerto in E Minor and the Romance from Wagner’s Tristan and Isolde might be a way to try to momentarily escape what we really could not. I’m sure the performance was wonderful, but it did not soothe either of our troubled souls that night.

Leslie’s brother, Mike, flew out from Albany, NY to be near Leslie when she underwent surgery on February 24th. Todd Crawford was Leslie’s neurosurgeon. The procedure went well, but he did confirm that her tumor was a GBM. Mike provided great comfort, moral support, and humor, and helped set Leslie on course for a great recovery and subsequent year of good health and happiness.

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