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.

Remembering Leslie

It’s been more than 3 3/4 years since Leslie died, and close to 5 years since she was diagnosed with glioblastoma multiforme, a still-as-yet incurable form or brain cancer. I tell people how ironic her death was, given that her career involved health promotion and disease prevention and she lived what she taught through diet, exercise, and other habits that promoted good physical and mental well being. The lesson, I guess, is that we take control of the things we can and hope for the best with the things we can’t. I believe strongly that she lived life to the fullest and that her habits enabled her to do so. She is still a role model for me in that regard.

I have several objectives for starting this site. First, of course, is to pay tribute to Leslie and preserve her memory. I can never make people who did not know her aware of how special she was, but I hope that I can use this site to continue to celebrate how special she was with all those who knew and loved her. I also hope to use this site to continue to allow my feelings toward her and toward the forces that shortened her life to evolve. Many people I know say that everything happens for a reason. I do not believe that, but I do think we can create something meaningful out of tragedy. From grief we can find wisdom and compassion. Since Leslie died I have grown less patient with what I see as the nonsense of life, but I also feel more connected to people that I don’t know and with whom I otherwise would never think I had anything in common, knowing that that there is some kind of spiritual bond that connects all humans. Just as I am less patient with nonsense, I have found much greater meaning in many things that I used to take for granted in life.

Finally, if I get a little better at building this web site, I would like to use it to connect to charities that either meant something to Leslie or have come to mean something to me through what Leslie and I went through together. Among these are The American Cancer Society, The National Brain Tumor Society, World Bicycle Relief, and Doctors Without Borders. I’m not sure whether I’ve set this up yet to allow others to post comments or add pictures, but that is another goal of mine, so as the weeks pass I will be adding functionality to this site. Please stay tuned.