Kevin’s Story

Site created on November 16, 2017

Like many who get a serious disease, I never thought it would happen to me. Most of you know that I have been living with Multiple Sclerosis for almost a decade now. Somehow I figured that this would suffice on the health challenges front. I've learned a lot from living with it and the limitations MS brings. 


But I certainly never expected to get cancer. In early October 2017, I started having problems with my abdomen. At first, it felt just like indigestion, but then my stomach started distending. I was gaining a pound/day despite having trouble eating. I never knew just how vain I was until this happened! 


After a whole bunch of tests and visits to various doctors, it turned out that I had a somewhat rare and aggressive form a cancer called Signet Cell Adenocarcinoma of unknown origin. This basically means that we don't know where the primary tumor is, but are only seeing evidence of a metastasis in my G-I tract.  Thus my doctors have diagnosed this as a stage four cancer that likely cannot be cured. As I am only 47-years-old, this news was really shocking when I received it. 

So presumably you're here because our paths have crossed at some point. Given the outpouring of support I've received from all corners, it's simply impossible for me to respond to everyone in a timely way, especially as I go through treatment. I thought perhaps this website would be a good way for me to give regular updates on what is happening. I'll do my best to keep it updated. 


But, in providing regular updates, I'd also like to explore something else with you -- what it means to die well from a Christian perspective, for this is what I'm really seeking to learn in this chapter of my life. A few generations ago, people gave serious thought to this topic - and there's a vast literature on the subject going back centuries. I recognize that we live in a culture that celebrates youth and would rather do almost anything than discuss death. To some, this topic may sound depressing.  Let me guarantee that it's not. 


As it turns out, the key to "the art of dying" (as those in the medieval period called it) is first learning how to live well. The pursuit of character is central to this, but learning to love well is everything. This art of dying is what I'd like to explore in the coming weeks, months (and God willing) years on this site. 


What I'm trying to avoid is the very real temptation to "medicalize" death. This means turning over the decisions to the experts (my doctors) and not taking responsibility for my life. The tragedy is that modern dying tends to cut us off from the love of our various communities and to move God out of the picture in favor of the very tangible help medical science can bring. 


Yet, in my case, the wonders of modern medicine might keep me alive a little longer, but it can't teach to me how to live well. This is up to me to pursue. Is it possible to find joy and contentment in the midst of very real suffering? I hope that it is. The poet TS Eliot put it well: 

Of belonging to another, or to others, or to God/
The only wisdom we can hope to acquire/
Is the wisdom of humility: humility is endless.


And this is where the joy comes from -- finally stripping down the pretense and the defensive shields and simply finding joy in the daily delights (and hurts) of living. By dying to ourselves my hope is that we might all learn how to live a little bit better.  I can't think of anything more important to learn.  I'd be honored if you'd join me on this journey as I try to learn the art of dying well. 


Newest Update

Journal entry by Lorelee Dodge

The Romans Road


A couple days ago I read a short lesson plan that a friend had prepared.  At the bottom of the lesson plan printed in small font were two verses from Romans.  I read the verses and heard Kevin’s voice.  


For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord. 
(Romans 8:38-39, New King James Version.)


From 2005 to 2008, Kevin and I would end many days strolling around our neighborhood in Torrey Pines, California.  Early in this period, Kevin began to memorize the book of Romans.  During our walk Kevin would recite to me the chapters that he had learned up to that point.  Kevin was multi-tasking:  walking for exercise, reviewing what he had memorized, and keeping me company (or maybe it was my keeping him company?).  Our walk was not based on a set path through the neighborhood.  The length of our walk depended upon the number of chapters he had memorized.  We just kept walking until he had finished reciting his chapters.  


About six months after he had started memorizing Romans, he had it.  Kevin knew the book by heart.  And he could recite Romans in a 45-minute walk.  As you can imagine, speaking the entire book in 45 minutes means your mouth is motoring really fast. And if our walking pace had been as fast as his speaking pace, we would have been in great physical shape.


During this period Kevin was teaching a six-hour seminar on biblical financial principles.  From the first time he delivered the seminar, he did it from memory.  Kevin surmised that the seminar would be more powerful if he could deliver the material without notes which would allow him to better connect with the people in front of him.  He was right; but it was a risky strategy.  On several occasions when it was time to begin the seminar, Kevin couldn’t remember his opening paragraph.  And sometimes during the seminar, Kevin would be near the end of a particular point, but he couldn’t remember what came next.  Somehow, some way, he remembered in the nick of time.  In business speak, this was just-in-time delivery.


We spent many weekends traveling so Kevin could present his seminar on Saturdays.  I heard his seminar so many times, that believe it or not, it became comforting to me.  Whenever I heard him deliver any part of the seminar, I felt like I was coming home.  


Kevin quoted Romans 8:38-39 during one high point of the seminar.  Those two verses contain drama; they are comprised of phrases that build on each other in successive waves.  For a person who was in glee club during high school, this was an open invitation to ham it up.  Consequently, Kevin became exuberant when he recited Romans 8:38-39 – he wove his arms, jumped back and forth across the podium, and increased the cadence of his voice.  It seemed like he was being propelled somewhere.  And if you’ve seen Kevin teach, you know what I’m talking about.  After the seminar people often remarked how much they enjoyed Kevin’s enthusiasm.  But I think his enthusiasm was less about the financial material that he was teaching, and more about the love that Kevin believed God has for each one of us.  Now when I read Romans 8:38-39 I see in my mind’s eye the exuberant Kevin at the seminar - and I hear his voice.  


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Hospice Selection


Soon after we received Kevin’s diagnoses of stage four adenocarcinoma, Kevin and I began to investigate hospice.  We didn’t have a particular process in mind when we started looking into hospice.  We just made it up as we went along.  The description below is what we did to find the hospice provider that we ended up using for Kevin.


Our process can be boiled down into six steps.  Step one: call Kevin’s dad.  Trained as an ordained minister, Kevin’s dad worked as a pastor for the Presbyterian church and later served as a chaplain for hospice.  Kevin thought his dad was particularly gifted by an ability to assist people during their final months.  Over the years, Kevin jokingly referred to his dad as “Dr. Death.”  Kevin’s dad was invaluable for us.  We talked with him about what he had observed working in a large hospice system and we tried to glean some general principles for our circumstances. 


Our second step was to search the Medicare database to obtain a list of hospice providers in our area.  Medicare keeps a list of hospice agencies that can be narrowed by region (https://www.medicare.gov/hospicecompare/#).  In addition, the Medicare list compares hospice providers by various criteria (e.g., getting timely help; obtaining sufficient help for symptom management; and communicating with family).  Friends of and relatives of patients who had been enrolled in hospice provided the underlying data.  Medicare also provides national averages.  Furthermore, the data includes self-reported analyses of each hospice agency’s process for accepting new patients (e.g., whether the hospice agency: a) asked patients for their treatment preferences; b) checked for shortness of breath; and c) offered a bowel regimen to patients taking opiods).


Our search of the Medicare database for the Dallas region returned 176 hospice agencies.  Of these, only 11 were non-profit agencies.  Although for-profit models have certain benefits and are more likely to use resources efficiently, we wanted a non-profit model.  Our concern was that a profit motive may be a limiting factor in a hospice provider’s facilities or staff.  And while there may be many excellent for-profit hospice agencies, Kevin and I wanted to remove profit from the equation and we investigated only non-profit hospice providers. 


Step three: ask for recommendations.  We asked our oncologist which hospice agencies his patients had used.  We asked our palliative care team which hospice providers they typically refer people to and why.  And when Kevin was in the hospital, we asked the internists on our floor which hospice agencies they liked.  We also asked friends who had personal experience with local hospice providers.  We kept asking and we wrote down what people said.


Our fourth step was to narrow our list to include only those hospice agencies that had an in-patient facility.  Kevin didn’t want to die at home because Kevin knew that his death could be medically complicated.  He wanted an expert team around him to make sure that whatever could be done for him was being done.  He didn’t want to be in a crisis at home (with just me) and have to wait for someone to show up to help him.  We had already had plenty of days when it was just the two of us at home and we were waiting on a medical team to get back with us – to tell us what to do – to tell us what was next.  We didn’t want to go through that again.  We wanted help.


Step five was visiting the hospice in-patient facilities.  Our story is Goldilocks and the Three Bears.  The first facility was too far away.  The commute back and forth from home to the hospice facility would have been painful.  The second facility was too small.  The in-patient rooms were small hospital rooms; I looked for the charm but couldn’t find it.  The third facility was just right.  The patient rooms were large, new and beautiful; I thought I was in a resort.  The rooms included a couch that became a queen size bed should I need it.  Each room had French doors that opened onto a patio overlooking a lake, with two fountains, plenty of green space, ducks and Canadian Geese to boot.  Was I in Disneyland? 


For our last step, we set up a meeting with the medical director of the hospice facility that we preferred.  We wanted to get a sense for his priorities as a medical provider. We also wanted to better understand what contingencies would be available if Kevin needed additional medical help that was beyond the capability of the in-patient hospice facility.  Finally, we wanted to establish a relationship with the medical director so that if and when we needed to reach out to him, we knew who we were calling. 


We were lucky to find the hospice agency that walked with us during Kevin’s final weeks.  When you’re under the extreme stress of end-of-life stress, the medical staff around you can make all the difference.  The professionals that took care of us, the quality of the facility, and the staff’s willingness to do whatever could be done for Kevin made a positive difference for Kevin and for me.  But hospice was not perfect; there were gaps that had to be addressed.  And in the end Kevin decided to leave the in-patient facility and to die at home, but that is jumping ahead and will be addressed later in the story. 


 

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