The Nature of Hope

The Nature of Hope

Mike Stone

I love being fooled by a twist ending to a movie. I remember rolling off the couch in disbelief when it was revealed at the end of the Sixth Sense that – spoiler alert – Bruce Willis had been dead the whole time. And I could watch the last scene of Usual Suspects on a continuous loop, endlessly fascinated by the slow unfolding realization that the Kevin Spacey character is Keyser Soze.

According to cognitive scientist Vera Tobin, two phenomena help explain our vulnerability to being fooled. One is confirmation bias. This is the tendency to seek information that confirms what we already believe. If we believe someone is guilty of something, we will view every action that person takes through a lens of suspicion. More than likely, we will find the evidence we need to support our suspicion. To put it another way, confirmation bias means that you have to believe it to see it.

The other phenomenon is anchoring. This is the tendency to lean too heavily on the first piece of information we hear, failing to correct it even as we encounter new information. Research in psychology has shown that when confronted with information that runs counter to our held beliefs, our response is to become more hardened in our existing position. Once an expectation has been set in our minds, it takes more than objective facts to dislodge it.

These days, I find myself going over in my mind certain scenes from our last six months with Aaron. Like watching a movie for the second or third time, I now see those scenes very differently from how I experienced them in real time. Looking at pictures taken of Aaron during our last few days in Arizona, for example, it is obvious that he was in worse physical condition then than he was when we arrived six weeks earlier. Not only had he become frailer, I seemed to not notice that the tumor on the side of his head continued to get larger, despite the treatment he was undergoing.

On the surface, it is obvious now that my desire for Aaron to get better led to confirmation bias. Throughout those six months, I continued to seek out “evidence” that a cure was possible. I remember sitting in Arizona reading an article about the early promise of immunotherapy as a treatment for some cancers. Never mind the qualifications that it was working for some people, with certain cancers, at specific stages of the disease. All I needed was something to confirm my expectation of a cure for Aaron.

Anyone who has had the misfortune of a journey similar to ours will understand the strength of anchoring. The early news about Aaron’s condition was all positive. The tumor came out cleanly; there was no indication of cancerous cells in Aaron’s lymph nodes; and several treatment options were available. I remember the oncologist telling us that if plan A doesn’t work, we will move on to plans B, C and D. The anchor was set. From that point, as the news grew increasingly grim, I kept going back to, “but you said…”

Why is it that the clues to Aaron’s worsening condition that are so obvious in hindsight were missed in real time? Was I in denial? Was I delusional? Or was I simply too afraid to see things as they were? I believe now that what I was experiencing during those months was a mix of anxiety and fear, peppered with a bit of denial. Remarkably, I discovered myself relying on the countervailing force of hope as my means of coping.

For me, hope was that sweet spot of comfort somewhere between denial and despair. Despair is simply the absence of hope. Trust me: despair will kick hope’s ass every time if you let it into your head. Had I given in to the despair, life would have felt like an emotional freefall with no sense of where the bottom was. Mindfulness meditation and lots of self-talk were the only defenses I had against the slow and steady encroachment of despair.

And then there is denial. To the extent that despair can take you to dark places void of hope, denial can give you a false sense of hope. Maybe avoidance is a better word than denial. It is the difference between pretending something isn’t there (denial) and staying away from something you know is there (avoidance). The paradox is that hope sometimes requires a hearty dose of avoidance to sustain it. The problem is that false hope, borne of this avoidance, is inherently unstable. You simply can’t go on avoiding the truth when evidence is mounting right before your eyes, despite your confirmation bias.

What stands out to me most in hindsight is how we were able to sustain a sense of hope over those six months. The alternative treatments created the big HOPE, that “you never know” feeling that left the small crack in the door.  But hope in real time was experienced in smaller bits. In order to sustain the feeling of hope, we had to make our world smaller. We hoped for a good night of sleep for Aaron; we hoped that he would have a good day with his friends; we hoped that his back pain would subside for at least a little while; until in his final weeks we hoped that he would have the energy to get through the day.

What amazes me now is the depth of honesty and sincerity around the hope for these little things.  The reason is because it was all we had. Perhaps the greatest testament to the durability of hope came from Aaron the day before he died. He was tethered to an oxygen tank full-time. He had stopped eating. Atrophy had taken the muscle off of his bones. He was on a constant drip of fentanyl at a high dosage. His mobility was restricted to being picked up and moved between the hospital bed that we placed in the family room to the electronic recliner that we bought for him.

That morning, Aaron had a particularly difficult time getting comfortable in the bed. I went to the medical supply store and purchased a wedge-shaped pillow to put under his legs, thinking it would relieve some of the discomfort. I returned with the pillow, hopeful (that word again) that it would work. To everyone’s delight, the pillow did the trick. With Aaron’s fate outside of our control, we did the one thing we could do. In that moment, we all felt good.

It was at that moment that Aaron informed me that while I was gone to the medical supply store, he and his mom talked about having a physical therapist come in and help him regain some strength. Imagine that. Twenty-four hours from death and Aaron was focused on what he could do next. Did Aaron really believe that he could get stronger? That is beside the point. Aaron never abandoned hope that there was a next step he could take to squeeze out as much life as possible, regardless of the eventual outcome.

We were told in October of 2016 that Aaron’s cancer had progressed and that the only remaining treatment had a 10% chance of working. The only way to respond was to live every moment fully by focusing only on those things that mattered in that moment. We did what we could do, we thought what we needed to think, and we felt what we needed to feel to make that moment the most important one in our lives. For us, hope meant living fully in the 10% we were given.

That, my friends is the nature of hope

And Now This

I am a strong and proud seven on the Enneagram. If you don’t anything about the Enneagram, just know that a seven’s greatest fear is feeling constrained by a lack of options. As a seven, my energy comes from anticipation of events that I believe will be more exciting, enriching, or pleasurable than what appears to be occurring in the given moment. I call it borrowing energy from the future. Not having something exciting to think about is the mental equivalent of being trapped in an elevator.

As I approach the age of 60, I am coming to terms with some harsh realities. First, I am as good at playing the guitar as I will ever be. This is due in part to the fact that I didn’t begin playing until I was thirty-nine. But the real limitation is simply lack of innate talent and my unwillingness to spend every spare moment trying to get the most out what ability I have. I can strum chords in time and play a few classic licks, but otherwise I am just your average guitar player coming to grips with his own mediocrity.

Likewise, I now accept that I am as good at golf as I will ever be. Even though I began playing golf at a much younger age than when I first picked up a guitar, the curse of mediocrity is the same. There simply aren’t enough hours in a day for me to put in the practice necessary to become a better golfer to a significant degree. Even if the hours were available, my inability to stay focused on one solitary task for a long time (I am a seven, remember) removes any glimmer of hope for improvement.

And, most difficult of all, I have given up on the fantasy of being discovered by someone who has been waiting for someone just like me to come along. I don’t have a clear scenario in my mind of who that someone is and what he or she might be waiting for; I just assumed that I would be the answer. It is clear to me now that, to use a common phrase, it just ain’t happenin’.

So here I sit, thirty years removed from the start of my professional career and only ten to fifteen years away from its completion. Let me be clear: I love where I am in my life. My relationship with LouAnn is stronger than ever (the secret: never stop doing fun things together); I work for myself doing what I love; and we have managed to surround ourselves with a group of loving, caring, and kind friends.

I still get excited about what lies ahead for me. This is probably due to the fact that some of what I consider to be my personal highlights occurred later in my life. I started my own consulting company at age 44; I played in my first rock band (mostly strumming chords) at age 54; I wrote a book at age 55; and I sang solo in a coffee shop at age 56. Not too shabby.

What I experience now is a more tempered kind of anticipation than before. I understand that the big rocks that make up my life are firmly in place. While there is still a sense of intrigue about what kinds of experiences will fill up the space between those big rocks, the youthful exuberance that leads one to believe they can be a rock star, a scratch golfer or a world-renowned consultant has rightfully dissipated.

And now this, grieving the loss of my 18-year-old son to a disease that is obscene in its level of brutality to the human body and damaging to the emotions of those who go on living.

I have learned two important lessons about grief. First, grief isn’t just another glass of water dumped into the emotional bucket, something else to make room for. Grief is more like a drop of food coloring added to the bucket: it changes everything. Like the water in the bucket, my emotional chemistry has been altered permanently. Everything looks and feels different than it did before. It would be easier to remove the coloring from the water than it would be to return to the way I used to experience the world.

Second, there is no finish line when it comes to grief. There is only the rest of your life to live to the fullest. For me, that requires that I remain vigilant in my battle with a spiritual and emotional DNA that leads me to look forward in search of what’s next. I am committed to my Enneagram task of learning to stay in the moment. To this end, I have done extensive reading on mindfulness and meditation and can at least recognize it when I start to go to that place of my own making in my head.

Clearly, I am a work in progress. But rule #1 is that I will be kind to myself along the way. This is hard stuff, trying to stay in the moment after an entire life looking forward. Not only is the final destination of the emotional journey unknown, it is unknowable. However, what I do know is that my life will continue to move forward in mostly predictable ways, punctuated with unexpected moments of sorrow and happiness, despair and joy. Such is the nature of life. And of grief.

Aaron's Story - From the Beginning

Aaron was your typical 16 year old – he loved sports, played the drums in a band and was working as an umpire. In June 2015, he told us that he thought his wisdom teeth were coming in as he was having pain in his jaw. Being the good mom that I am - I said, “No, they aren’t-you are too young.” Aaron insisted that something was going on so we went to the dentist and then an oral surgeon, who did a biopsy. One week later, he was diagnosed with Sclerosing Rhabdomyosarcoma -a very rare sub group of Rhabdomyosarcoma. Our world was turned upside down – we have a kid with cancer. 
There are no words – it is surreal.

We live in Fort Wayne Indiana so we had to decide where to seek surgery and medical treatment – we choose Chicago. The next day we traveled to Chicago to meet the surgeon who would do his surgery, she was very confident in her ability to get the entire tumor and in her team to rebuild his jaw. It was a moment of relief in the midst of this surreal experience happening to our son.

The scan of Aaron's tumor
from the top

The next couple of weeks were spent getting scans, blood work, and making arrangements to be in Chicago for a couple of weeks. It gave us time to digest the news. We took our cues from Aaron and his great sense of humor. One day, he was asked to cut the grass and of course the reply is, "I can't cut the grass - I have cancer!" Seriously-that was not going to fly - he cut the grass!




In August of 2015, he underwent the extensive surgery to remove the tumor. In order to get to the tumor they had to remove part of his jaw which was rebuilt with his fibula. He spent 10 days in the hospital following surgery. He had to return for a second skin graft on his leg to aid in the healing process. It was a grueling recovery but he handled it like a pro - always making jokes and laughing at every opportunity. Surgery was a success, clear margins and no signs of cancer.

By November of 2015 he was healed enough to begin a 40 week chemo regimen. Chemo began with a rough start and by week 4 he ended up in the hospital for 4 weeks due to complications from chemo. After the 4 week hospital stay, we decided that the travel back and forth to Chicago was getting too difficult for Aaron – we needed to be closer to home. We transferred his care to the pediatric oncologist in Fort Wayne. The Chicago doctors would continue to be involved but all treatment would be in Fort Wayne.



Scans were done again– no signs of cancer. Aaron had chemo treatments  every week and was such a good sport -always joking and laughing with the nurses. His friends would come up to the hospital and they would have pizza and play video games. Aaron’s room
was the party room.



Aaron began to have pain in his arm in June 2016 – scans showed that he had a tumor on his humorous and pelvic bone – biopsy confirmed that the Sclerosing
Rhabdomyosarcoma had returned. He was a few weeks shy of completing chemo. It was discouraging as he was getting ready to start his senior year of high school. Once again, he handled it like a pro saying, "What do I need to do?" He began a different chemo regimen that is designed for relapse patients. The hope at this point was to stop the cancer spigot and slow down the growth of the current tumors. In August of 2016, we noticed a swelling on the side of his temple and of course our worst fears are confirmed– another tumor. By this time we are beginning to predict the scan news by the look on the doctor’s face as he walks in the door.

The next option for Aaron was a clinical trial using an immunotherapy drug. This was not without obstacles as he developed a pneumothorax which required a hospital stay. After one cycle, scans showed more tumors. He was taken out of the clinical trial. Aaron’s standard response each time we hear that there are more tumors is – “OK, let’s move on to the next option”. His next option was a targeted drug which he began in October 2016. We were told that this is the last option as his cancer keeps figuring out ways to continue to spread. This was the hardest news as Aaron could no longer say – what’s next? 

We chose to not sit around and wait to see if the targeted drug would work - we took to the internet and our loving and supportive network of friends and family. We learned of a center in Scottsdale AZ that works to get patients own immune system to attack the cancer. It was an alternative treatment which included an array of supplements. As soon as we did our research from home, Mike and Aaron flew out to Arizona to check it out. They were extremely encouraged so they stayed to begin the treatment. I flew out a few days later to join them. Sam joined us when his class schedule at Purdue allowed. Aaron went to the clinic everyday for treatment and he continued to take the targeted drug. We were in Arizona for about 5 weeks. all possible due to our wonderful support system. They started a go fund me to help with expenses, took care of things at home and provided support and love from afar.

Scans were done again January 6, 2016 and we see that familiar look –cancer has spread – no more options from the medical community. Once again, our network of friends stepped in and shared with us another alternative treatment. We checked it out and decided to go with it! Aaron did this treatment at home. It gave him renewed hope and encouragement. We choose to follow our own path and live every day to the fullest.


Aaron continued to work hard to reach his goal of graduating from high school. Unfortunately the
cancer had other plans. On February 20th he was admitted to Hospice home with pneumonia - we were told to call his loved ones for their final goodbye. Aaron had other plans. He battled back to reach his goal of going home. 

I remember when Aaron was a small child and I would wake him for daycare in the morning- his standard response was, "I am not done yet". He was not done yet. He went home on March 1st. We had the support of Hospice and our loving support system of friends and family. He was very weak but kept a smile on his face and kept up the good fight. Then on the morning of March 12th - he woke up early saying, "Mom, I am awake!" This was not normal. He fell back asleep and woke up again uttering the same words, "Mom, I am awake!" Then he says, "something is not right today - what is going on?" I took his hand and reassured him that he was fine but I knew in my heart that it was not right. He was with us but he was also with his grandpa, Aunt BerBer and cousin Melanie who had all passed away before him. We called Hospice and they sent a nurse - Mike and I decided he needed to be back at Hospice. Aaron's next words were, "I need to go to Hospice and now! I also need to go in an ambulance. When will they be here?" We summoned our close friends who met us and the ambulance at Hospice. Our friends got to hold his hand and tell him that he is loved. As soon as it was just Mike, Sam, and I in the room - Aaron took his last breath and peacefully went to heaven.

Aaron lived his 18 years of life with grace, dignity and laughter. He made an impact on everyone he came in contact with. He did not achieve his goal of graduating from high school but he achieved far more with his gift of laughter, friendship and love. He will be greatly missed.

I love you Aaron!

Mom

We've Got This!

Aaron always had things under control. Or, so he tried to convince us. “Aaron, have you finished your homework?…have you cleaned your room?…have you made arrangements to get to practice tomorrow? And so on. No matter the question, his response was the same: “I’ve got this.” In other words, he had the situation under control. Presumably, this meant he had thought it through carefully; he knew what needed to be done; and he knew how to get it done. Or not.

In truth, Aaron improvised his way through life. There is great skill in improvisation. It doesn’t mean that you make things up as you go. Rather, good improv is based on self-awareness, timing and anticipation. When Aaron said I’ve got this, what he was really saying was, “Don’t worry. I’ll figure it out.” Usually, he did indeed figure it out.

When we decided to start writing and sharing about our cancer experience, there was no doubt whatsoever what our title would be: We’ve Got This. Like Aaron, we don’t mean to suggest that we have things figured out. To the contrary. There is no figuring out how to deal with the death of a teenager. But we improvise. And, yes, we do make it up as we go sometimes. But, like Aaron, we know that we will do what we need to do to keep moving forward. For us, writing and sharing our story helps us move forward.

The decision to start this blog is both selfish and selfless. The selfish part comes from the fact that it is good for us to talk about Aaron and our grief experience. We learned early on that there is no pre-approved way to grieve. This is why we are forced to improvise. The selfless part is that we share our story in the hopes that it might help someone else realize that they are not crazy or that they are not alone as they experience the wide range of emotion that is the essence of grief. Yes, grief entails sadness. But grief is also about finding peace, experiencing joy, and finding ways to keep Aaron’s spirit alive in our own lives.

We will keep writing as long as we have something to share. Take from it what you need and leave the rest behind. Let us know if you have thoughts, comments, or reactions to what you read.

With love,

Mike, LouAnn and Sam