How to extend love, hope, and care for those who are sick and who ask for your prayers when you are not religious

When I was six my little sister Beth came down with the flu one evening. She was pretty sick the next morning when I went to school, and the last memory I recall is of the doctor, having made a house call, pulling a tongue depressor out of her mouth with a long strand of mucous attached to it. Later that afternoon my father walked into my first grade classroom, picked me up from my desk, carried me to the car, and drove home without speaking a word. For the rest of the day my parents were unable to speak when I asked where Beth was. Days later, in an effort to comfort our whole family and help us accept Beth’s death, my Grandfather, a Lutheran minister, along with my Grandmother, told us Beth was so special that Jesus had called her up to sit by his side. When my Mother protested in angry tears, my Grandfather said that we had to accept God’s love and his will as an expression of that love.

I’m not sure if this was the moment that set me on a course toward agnosticism and ultimately atheism or not, but I never thought Leslie’s contracting cancer or our hope for her survival had anything to do with God, although I don’t think either of us ever doubted that love and hope between and among humans has powerful emotional and possibly physical healing potential. I never blamed God for her cancer, nor did I appeal to God for her recovery. I’m fairly certain Leslie did not either. But we do have friends who are religious who told us they were praying for her.

In the past year I’ve had a number of friends and relatives who have experienced health crises, and have asked me and others to pray for them. Of course I want to channel all the positive energy I can toward their survival, recovery, and good health, and send them my love and hope for the best. But I would be a hypocrite to let them believe I am appealing to God for a positive outcome. Each time I see a post, receive a note, or have a conversation wherein I am asked to pray for recovery from a serious health condition I am reminded of my Grandparents’ words, and the reasoning that follows. If I were religious, and if I accepted their words, then I would have to accept that God had a reason for inflicting Leslie with brain cancer, and similarly had intentionally given cancer to my friends and relatives, given that God is all knowing and all powerful. Therefore, in asking me to pray for recovery and cure, I am being asked to ask God to change his mind. Either this, or I would have to believe that God perhaps had not been paying attention or his powers had slipped when they contracted their diseases. But then, God is the creator of cancer, is he not?

My heart breaks for those I care about who are suffering and scared, and going through uncomfortable treatment with no guarantee of success. And I cannot hear about or watch what they’e going through without being thrown back to the fourteen months that Leslie went through. Most, I hope, have better prognoses than Leslie did, and are suffering from conditions for which medical science has developed much more effective treatments. A network of loving, caring, hopeful, well-wishing friends and relatives can only add to the odds of long-term survival and complete recovery. In the meantime, I won’t pray, but I will contribute to organizations that fund cancer research and provide support for patients and families of cancer survivors.

Pandemics and Protests

Sunday I was headed downtown on my bicycle to meet some friends and together we were going to head down to the demonstration protesting the brutal killing of George Floyd. On my way there I realized I forgot to put my mask in my jersey pocket and so thought better of joining a large crowd, given the risk of either contracting or spreading COVID-19. Instead I continued riding down the Cherry Creek Trail to Washington Park to ride a few laps before heading back home. It was a warm day and lots of people were out, and very few were wearing any facial protection. Recent reports dismissed the risk of contracting the virus while exercising outside, as opposed to standing shoulder to shoulder shouting or singing in a crowd, and the risk to cyclists and runners/joggers is deemed to be especially low. It was nice to see so many people being active, but it also creates a hazard on the trail. Walkers with headphones and earbuds don’t hear warnings from cyclists approaching from behind; inexperienced cyclists either don’t handle their bikes well or are inattentive; other cyclists who are used to less crowded conditions on the trail ride recklessly, not adapting their riding style to the more congested circumstances (I might be a bit guilty of this.).

Washington Park is home to the Eugene Field House. Built around 1875, this house was the home of the well-known journalist and writer Eugene Field, who was the managing editor of the Denver Tribune and lived in the house from 1881 to 1883. After Field moved to Chicago in 1883, the house fell into disrepair until a local group of preservationists convinced Margaret Brown to purchase the house and donate it to the City of Denver in 1927. As part of this preservation effort, the house was moved from its original site at 315 W. Colfax to its present location, where it has served as a branch of the Denver Public Library system and more recently as the headquarters for Park People (www.historycolorado.org).

Behind the Eugene Field House lies a quiet space where people come to enjoy the shade, beauty, and solitude of the Hazel Gates Woodruff Tribute Garden. You can commemorate a person, relationship, organization, or event with a personally inscribed brick paver.  Requests are processed and installed three times each year. The cost for an engraved paver is $100. (http://theparkpeople.org/What-We-Do/Park-Legacy-Program)

After Leslie died I purchased an engraved paver in Leslie’s memory, as did an anonymous friend of hers. I decided on my first lap around the park to stop and spend a few minutes in the quiet space alone, thinking about how much I miss and will always miss Leslie, how much my life has changed in the five years since she died, and how difficult a time she would have believing today’s state of affairs. I still cannot get on my bicycle, pick up my guitar, or go out onto our back patio without thinking of Leslie or wishing she was with me. I have met several wonderful women since losing Leslie and while I have recognized each for the unique and special individuals that they are, I may still unconsciously and unfairly project qualities of Leslie onto them in my mind, or create expectations for a new relationship that are unrealistic. I don’t really know. Leslie would be horrified to learn that Donald Trump is our president. She and I worked together to help get Obama elected in 2008 and really believed that our country was on a path toward true progressive reform after he took office. As a nurse whose most recent job was to promote wellness and lead teams on disease prevention she would be disappointed at our country’s response to the corona virus, but would no doubt be on the front lines combating the pandemic. She would be so disappointed at how divided our country is over race and social justice.

I completed my afternoon by riding back to Confluence Park on the Cherry Creek Trail, on around Sloan’s Lake and up to Crown Hill, thinking about the many privileges I have had in my life, including the privilege of still having my life, my health, my family, my friends, a sense of love, a desire to love again, the privilege of generally being treated fairly by our social justice and economic systems, and the tremendous luck I have had to be able to stay comfortable and safe during the pandemic. I continued to ride, pondering the responsibilities and obligations that come with these privileges and this luck.

Engraved Pavers
Engraved Pavers, Eugene Field House, Wash Park, Denver

When I got home I picked up my guitar and put a few chords together and began composing a song that I completed and recorded the next day. I know that throughout the labor movement, the civil rights movement, the anti-war movement, and since, music has helped motivate us and helped us vent our frustration. It might just be a selfish, vain indulgence for me to write and record these amateurish creations, but I will continue to do it. I hope by sharing them they make some difference.

Leslie would have been 62 today

Sixty-two years old is still very young, in my mind. I’ve been riding bicycles with a group of retired people this summer who are mostly that age and older, and all are fit, active, mentally sharp, and healthy. Of course, there are many people much younger who must live with chronic health conditions, and others who have not had the luxury to tend to the things that keep them healthy. I have said many times how ironic it is that Leslie’s field was health promotion and disease prevention, and she lived her work (sometimes to the annoyance of friends who hadn’t quite drunk the cool aid), and that in spite of her habits she was stricken with brain cancer at age fifty-six.

I carry Leslie’s memory with me always, and I always will. Not everyone understands this. Some people think I am hanging on to grief. That is not the case at all. My love for Leslie, and our relationship together, changed who I am. I would never want to deny that, or go back to who I was before I met her, or live without the gift of her memory. I recently had a relationship that ended, in part because the woman I was seeing kept waiting for me to “get over” losing Leslie. I am over losing her, but my time with her is a very big part of who I am. Anyone who is going to get to know me well is going to have to understand that part of me. I know anyone who has been in a truly loving relationship and has experienced the death of a partner will understand that. We don’t ever forget our parents after they die. They shape who we are. It is the same with a spouse we have loved. There is room in the heart for new love, but asking for it to replace the memory of someone you loved before who has died is to not understand.

I went to a charity event last night at a local brew pub. It was an auction of bicycle parts and accessories to benefit an organization that promotes cycling in low income communities. While there I encountered a colleague of Leslie’s from the VA, someone who had been a good friend of hers, whom I had not seen since her memorial service. I recognized him immediately and we enjoyed touching base, and it was an immediate reminder of how respected Leslie was professionally, and also how delightful she was to work with on a personal level. At the same event was another mutual friend who had paced Leslie when she ran her first marathon. He was an experienced and excellent runner, having completed many marathons in well under three hours. Leslie’s goal was to finish in under four hours, and this friend was sure he could keep a pace that would get her in under that mark (They succeeded). I was able to introduce both these men to each other at the event last night, and share a moment of remembrance on the eve of Leslie’s sixty-second birthday.

As I meet new people I come across some with qualities that are similar to those I admired in Leslie. When I meet women who cycle I think of all the times I chased Leslie up the road to the Sandia Crest or up Lookout Mountain. The women I see swimming or running make me think of her dedication to fitness and the hours she spent training for the sprint triathlons she entered. The people I meet through the acoustic music community in the Denver/Boulder area remind me of her playing the mandolin and fiddle, and the fun we had writing parody lyrics to old songs. I hear a lot of talk about various bluegrass festivals around Colorado and elsewhere, and remember Leslie’s account of running off to Telluride with her mandolin in one of the early years of that festival. And, of course, her love of nursing and her devotion to health care had so much to do with who she was and how she lived her life. And I will always think of her easy laugh, and her delight in being around the people she loved.

Ashes to Ashes, Dust to Dust, Lookout Mountain

Before Leslie had her surgery, she knew there was a chance she would not survive it. She asked that if she didn’t we would have her cremated and distribute her ashes at the top of Lookout Mountain, one of her favorite cycling spots. Luckily, her surgery went very well and she enjoyed another thirteen months of life. When she finally died she was cremated and her ashes were divided into three sets. One set was distributed at the base of the memorial tree that we planted along the eastern edge of Sloan’s Lake in Denver, a flowering crab apple tree that was made possible through a donation in Leslie’s name to “People for Parks.” (This was to fulfill a later request of hers.) Another set was distributed at the base of a red maple tree planted in Leslie’s memory in Vorheesville, NY, the town where she grew up. I also kept a small set, thinking that I would have a small vase, sculpture or some other piece of art made that would incorporate her ashes into pottery or glass. After more that four years I never had this done, and after reading through her diary posting that she made before her surgery, and being reminded of her wish to have her ashes spread on Lookout Mountain, I finally gave up on the idea of a piece of art, and decided that a resting place on Lookout Mountain would be most fitting for the set that I had kept.

Today was Denver’s “Bike to Work” day. I used to participate in this event every year, although it was just a formality for me, being a fairly regular bicycle commuter anyway. Since I’ve been retired, I’ve felt a bit left out by all the publicity in the weeks leading up to “Bike to Work” day. So today I decided it would be a good day to ride up to Lookout Mountain and distribute Leslie’s remaining ashes.

In the local news last night there was a story about a local hiking trail (not on Lookout Mountain) that had been closed due to mountain lion activity. I’ve seen bobcats in the wild but never mountain lions. It’s fairly common for trails to be closed temporarily in the fall due to rattlesnake activity and sometimes due to bears, but I had not ever heard of trail closures due to mountain lion activity. I went to sleep last night having made up my mind that I would carry out my plan this morning, and as I slept I dreamed that a mountain lion attacked me as I was kneeling and spreading the ashes. I awoke thinking that it would not be an entirely unfitting way for me to die. Then, this morning, about a mile from the top of Lookout Mountain, I passed a sign warning of recent mountain lion activity in the area and telling people how to deal with a confrontation with one. A little further up the road, I was startled as I rounded a corner by a buff-colored animal only a few feet to my right on the side of the road. It took me only a moment to realize it was a deer, not a mountain lion, but I’m sure it caused a jump in my already elevated heart rate.

I found a fitting spot to ceremoniously empty the pouch of ashes on the north side of the road that winds up to the Boettcher Mansion and the Nature Center and Preserve. It was a beautiful day to take a bike ride, and the mountain top was lush and green after an unusually wet spring. Today was the first day this year expected to reach a temperature of ninety degrees. I’m lucky to be able to do this ride during the week when the traffic on the road is light. Because the descent is full of turns cyclists can ride down a lot faster than cars can drive, and on weekends you will find many frustrated cyclists having to break behind slower cars on the way down the mountain. Today I was able to ride back down into Golden without a single car in front of me, imagining Leslie right with me the whole way down. Oh, how she loved flying down that mountain on her Trek Madone!

Sloan's Lake Memorial Tree
Sloan’s Lake Memorial Tree
Vorheesville, NY Memorial Tree
With friends Janet and Joseph Vertrees after riding up Lookout Mountain

Adding diary entries

After a lot of contemplation I decided to scan and upload Leslie’s diary entries starting with her writings from the time she was diagnosed through a very meaningful visit her brother and sister in law made to Denver for her 57th birthday. I don’t think there is anything that says more about her character than her own words describing her feelings about being diagnosed with a terminal disease and the way she coped with the medical visits and and her expression of the appreciation for the many people who made her final year as meaningful as it was. I’ve placed them into two separate pages. I’ve also added her account of our “Ride The Rockies” experiences in 2013, along with pictures.

Anniversaries

I remember reading or hearing that meteor showers occur annually because comet tails leave a residue of dust that sits in one location in space in the path of the Earth’s orbit. Each year at the same time the Earth passes through that dust, and as the larger particles of dust enter our atmosphere they burn up, causing meteors (shooting stars). Dates that trigger sad memories might somehow be similar. Yesterday (March 31st) was the four-year anniversary of Leslie’s death. While I tried not to dwell on it, I was clearly passing through some kind of emotional dust. In fact, the past 10 days have been like that, marking four years since Leslie was admitting to a hospice facility. Sometimes we’re not conscious of a particular date being the anniversary of a special event, even though we are aware of feeling “different” on a particular day. Wouldn’t it be curious if someday it was discovered that there was an actual physical component to memories? Anyway, yesterday has passed. More than dates, my memories and emotions are triggered by doing the things by myself now that Leslie and I loved doing together, and remembering how much she loved simple things that she can no longer enjoy: reaching the summit of a long climb on a bicycle; having an enthusiastic puppy run to her when she called; smiling at an infant and seeing the infant smile back; cooling the burn of green chile in her mouth with a sip of beer; arcing a smooth heel-side turn in six-inches of powder; seeing the first pelicans at Sloan’s Lake in the spring; seeing just about any good live musical performance; and so many more. When life gets difficult it is important to remember the people we have loved who are no longer living, and to remember the things they loved most about life that they can no longer enjoy. We owe it to them to find our own pleasure in the lives we have left.

End of Life Choices

I was inspired to write this post after hearing an interview with a representative from Compassion & Choices on Colorado Public Radio this morning. The program interviewed a man whose wife, stricken with a terminal illness, had chosen to ingest medication to end her own life. In 2016 Colorado voters passed proposition 106 which made this practice legal. In 2015, when Leslie died, this option was not available to her, but had it been, there is a good chance she would have chosen to exercise it, although by the time she would have wanted to make that choice she might not have been able to do it.

Today marks the 4-year anniversary of my having to decide to admit Leslie to a hospice facility. She had wanted very much to die at home, and I was committed to honoring her desire. We had enrolled her in the home hospice services of SCL Health and had been getting regular home visits from a nurse who had given me instructions on pain management and how to administer the many medications that had been prescribed by Leslie’s palliative care physician. Up until about the last month of her life her pain had been fairly manageable. She remained active, lucid, and in good spirits. Early in March of 2015, however, I was giving her regular pain medications, and she began having vision disturbances that she didn’t understand and couldn’t really describe. My best guess is that it seemed as though she was viewing the world through a prism, with images reflected above and below what she was actually seeing. So that she could be outside as much as possible, we rented a wheelchair for outings to the park across the street and walks around Sloan’s Lake. We were lucky to have an exceptional string of warm weather.

Knowing that these changes in Leslie’s health were not good signs, Leslie’s brothers and her son came to spend several days with us, and with their arrival her spirits and well being in general received a boost. They all left for the airport early Sunday afternoon and Leslie took a long nap. She awoke early in the evening in quite a bit of distress that was not relieved by the pain medication I had at hand. Although she was awake, she was very agitated and not really coherent. I phoned in for a stronger prescription, but in spite of my best efforts I could not get her pain under control. By late the next morning, a Monday, and on the advice of the hospice nurse, I admitted her to the Collier Hospice facility, where they struggled until late that evening to bring her pain under control.

I’m reflecting on these circumstances now because neither Leslie nor I were prepared for how suddenly or how severely here decline would be. I thought the medication I had would be adequate for managing her pain, and I naively thought there would be a predictable, linear progression from poor health to death. This is important for people who have terminal illnesses and think they may want to ingest life-ending medication at some point. From what I understand, the law requires that the patient must self ingest these medications. In Leslie’s case, by the time she would have wanted to do so, she would not have been capable of taking the medication her self. If we had known how quickly her decline would have been once her vision disturbances had set in (and subsequently had been told that an MRI revealed her cancer had spread to her leptomeninges), perhaps she would have chosen, had it been legal at the time, to end her life while her son and brothers were still her. And, had it been legal at the time, maybe the hospice nurse and/or the palliative care physician could have counseled her to do so to avoid her subsequent suffering.

At one point while the hospice staff was struggling to bring Leslie’s pain under control one of the practitioners asked for my consent to sedate her if necessary. I gladly agreed, not fully understanding the implications. Eventually sedation was not needed and Leslie’ pain seemed to subside. She appeared to be resting comfortably, but she never spoke another word for her remaining eight days of life, having slipped into somewhat of a comatose state without sedation. I later learned that the practitioner was hesitant to sedate her because sedation causes unconsciousness but it is not clear whether it completely eases pain. It is an awful thought to imaging experiencing pain while being unconscious.

Lukas, Leslie’s son, came back up from Albuquerque after I told him that she had been admitted to the hospice facility and was not likely to regain consciousness. Several of us had been in the room with Leslie for hours, and in my case several days, without seeing any response from her, when Lukas came in the room. Although she did not speak, she clearly reacted to his presence, which was noticed by all who were there.

I am very sorry that in the end I was not better prepared to ease Leslie’s transition into death. I don’t really know if there is any other way things could have played out. Leslie always accepted that glioblastoma was not survivable, but she also believed that she would be among the 1 in 10,000 that enjoyed 5 years of good health post diagnosis. Even after her steep, dramatic decline, I never heard her express fear of death or self pity. She only worried about how her death would affect those who loved her after she was gone. And even in pain she wanted to live, so this makes me wonder if, even if it had been legal at the time, she would have chosen to take life-ending medication. I will never know.

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.