Here is installment 10 of 11 from An Unexpected Journey. This was originally posted as a Facebook update on August 15, 2015 to keep friends and family up-to-date and entertained. At the encouragement of many, I’m re-posting so people I am not connected to on Facebook will have access to the journal entries.
Of all the updates I’ve posted since this journey began, this is the most personal and emotionally charged. It’s also the one I’ve thought about the longest. Much like an actual birth, the ideas in my mind seem to have a gestation period. Strangely, they aren’t always fully formed until the birth itself—that moment I gather the courage and focus to put my thoughts in writing. This chapter is a prime example because, aside from a few vague ideas, I’m less certain about the eventual content and structure of this than about anything I’ve ever written.
Until this week, I had envisioned the birth of these words taking place after the results of next Friday’s robotic removal of my thymus gland—or whatever in my chest is lighting up the PET scan. But I suspect the uncertainty has been weighing on me more than the situation, on its own, probably deserves. As a result, much like a newborn baby, the thoughts and feelings are arriving on their own schedule.
In the last update, I wrote about the opportunity I’ve been given to experience and redefine who I am in the face of uncertainty. At the moment, this uncertainty is driven by a prognosis that remains a mystery. By the time I get the results, I will have spent three weeks with an unknown outcome looming in the forefront of my conscious and unconscious mind.
The Emotional Journey
For the most part, I am doing better than I did during the similar period of uncertainty I faced between the discovery of the tumors and the definitive diagnosis and treatment plan. I’ve been far from perfect, but I’ve had some success being less short-tempered. Nevertheless, this is bothering me more than I want to admit. The experience is odd because I have every reason to be optimistic. Dr. Gordon, the oncologist, is 95% confident the active area on the PET scan is not abnormal. His calm, matter-of-fact confidence would give even the most pessimistic person reason to celebrate.
Perhaps it’s the time I spent studying the markets and working in the bond options pits at the Chicago Board of Trade, but I’ve been having trouble shaking the idea that events with a small probability happen with a higher frequency than statistics would predict. It’s slightly more complicated in this case because even though the odds are better, the stakes are higher. In the unlikely event that even a small part of the tumor is still there, the next step isn’t more chemo; it’s either radiation—a possibility neither Dr. Gordon nor I are fans of—or a bone marrow transplant.
The degree of difficulty either would add to the equation makes me shudder.
The highly optimistic part of me is hesitant to verbalize this possibility simply because I don’t want people thinking about it. If I’ve learned anything from this journey it’s the power of collective, focused, and positive thought. With that in mind, my intention is not to get people to visualize more intense treatments when I’d rather they visualize a confirmation that I’ve been cured.
So why did I mention this?
Two reasons. First, it would be disingenuous to pretend the possibility of a less-than-optimal outcome doesn’t exist. Second, it explains why “I’m very optimistic. And slightly scared.” is the honest answer to the question, “How are you doing?”
Honesty is important and not inconsistent with an overall positive attitude.
A More Challenging Question
For most of this journey, I’ve seen the tumors as a gift that continues to bring lessons, exponential personal growth, and an outpouring of love and support I could never have predicted. From this perspective, I feel like the luckiest, happiest guy on earth. That feeling provides a nice answer to the question, “What did you get out of this experience?” However, it doesn’t address the deeper question that has been on my mind from the beginning:
“Why and how did the tumors develop in the first place?”
Knowing that risk factors exist for certain types of tumors, I casually asked Dr. Gordon and his nurse, Betsy, what causes lymphoma. I remember the conversation vividly because both of our reactions took me by surprise. Betsy instantly and insistently replied, “You didn’t cause these!”
The investigative reporter in me had asked the question out of genuine curiosity with no particular agenda in mind, yet Betsy answered as if I had asked “What did I do to cause these tumors?”
As Betsy went on to say that little is known about what triggers lymphoma, I experienced an unexpectedly strong, gut level disagreement with her contention that I was somehow blameless. I didn’t know why, but I knew on a deep, soul level that wasn’t completely true.
This is the heart of the issue I’ve been grappling with for months. Before I explain my thinking, however, it is important to share a few key points that will make more sense as I reveal more of the story.
- What follows is my belief about my situation and only my situation. If it helps people understand their own challenges at a deeper level, that’s great. What I have to say may not apply to anyone else. Nor does it have to.
- In no way should this discussion be viewed as me blaming myself in a self-flagellating sort of way. Nor am I feeling sorry for myself. Instead, this is about owning and being accountable for the way I chose to experience life.
- Finally, and perhaps most important, I am not blaming anyone else for my situation. Life, by its very nature, involves interacting with people who don’t always make the choices we wish they made. That doesn’t make them wrong. Most of the unhappiness on this planet is caused by trying to change the behavior of someone else. For this reason, I do my best to allow people to be who they are without any pressure from me. But that doesn’t mean I’ll always be happy about it. Therein lies the lesson.
Our Minds and Our Health
The connection between what we think and what we experience from a heath standpoint is well-known although not necessarily universally appreciated or accepted.
I certainly can’t attribute every illness or injury to my state of mind, nor is it necessary. However, having recognized certain patterns over the years, I’ve found it helpful to consider the possibility whenever I am faced with a health issue because our bodies can be very literal. For example, lower back pain is almost always a sign that I am concerned about money and may be slipping into a scarcity mentality. In other words, it isn’t unusual to experience stiffness and pain in the part of my body that plays a key role in overall stability when my mind raises questions about my financial stability.
Similarly, congestion is a warning sign that often appears when I avoid initiating important conversations. The words I need to speak are literally trapped and show up in the form of congestion. While I don’t particularly enjoy this symptom, I do appreciate having an internal warning system that encourages me to think about concerns I should express rather than repress.
Another Lesson from the Tumors
In the case of the tumors, the situation is a bit more complicated. In an earlier update, I wrote about my neck related fears and why I wasn’t surprised the tumors were discovered there first. Given my fear of choking, the pressure on the front of my throat made me wonder how the tumors would impact my breathing. The way the tumors surrounded and put pressure near my voice box, I also spent the first few days wondering if there was a connection to communication—perhaps a more advanced form of congestion.
The first CT scan told a markedly different story. The tumor that bulged out above my collar bone was only the tip of a much bigger mass centered in my chest. The largest tumor, which wasn’t visible until we looked deeper, was sitting right on my heart. The symbolism of that didn’t escape me. In a real sense, the scan gave me a rare glimpse of a much deeper emotional issue of which communication was only a part.
As I pieced together the signs, it wasn’t difficult to understand what my intuition leads me to believe happened in this case. Given the heart connection, it probably won’t come as a surprise that there was a woman involved.
The discovery of the tumors corresponded almost exactly with the one-year anniversary of the last time I had seen a woman with whom I had been in a brief, but particularly promising relationship.
When I first saw her by the campfire on a beach during a scuba trip, I was drawn by her incredibly peaceful energy. She was one of the most beautiful women I’d ever seen. As she shared her passion for travel and her adventures living in South Africa, I knew she was someone I wanted to know better.
Since we were on separate boats during the one-week excursion, we didn’t see each other again until the end of the week when I invited her and her friend, Amanda, to join our group for dinner. To my surprise, a few friends who saw the pictures from our group outing spontaneously commented that we looked like a couple who had been together for a long time.
She and I stayed in touch sporadically after the trip, but didn’t see each other again until seven or eight months later when she stopped in Chicago on her way to Thailand. A few weeks after her return, we made plans to go diving in Cozumel.
As fellow divers, I knew we’d have fun, but never expected the connection we actually experienced. I’ve dated enough people to know I didn’t imagine it. I can still hear the sweetness in her voice during one of my trips to Cleveland when she said, “It doesn’t feel like you are visiting. It feels like you belong here.”
From the start, she expressed her intention to move to Thailand to become a scuba instructor—a move I supported fully. One look at her doubly-thick passport was all the evidence I needed to know that her eyes and heart were always fixed on the next adventure. I knew I’d be sad to see her go, but standing in the way of her dreams was furthest from my mind. To my delight, on three different occasions she asked if I’d ever consider living overseas. All signs seemed to point to our mutual desire to leave the door open and explore the possibilities.
Unfortunately, during my last visit, she was emotionally closed from the minute I arrived. Aside from sharing at a little about her pattern of getting involved in relationships before she made one of her transitions out of the country, she wasn’t particularly open. She was in such a difficult place emotionally that we decided collectively that it would be best for me to return home. However, the following morning when I called United, she grabbed my arm and said, “Wait! Don’t go. Maybe I can work through this.”
Willing to give it a shot, we decided to postpone my return until the following day.
That night, we had a great sushi dinner followed by a trip to Jeni’s, an ice cream shop in Chagrin Falls. For a few hours, the woman who captured my heart had returned.
Later, as I listened to the lifelong difficulties she faced with commitment and the timing of her overseas adventures, I admired her honesty and found myself quietly astonished by my own reaction. We were engaged in what was, objectively, one of the most unpleasant conversations in recent memory, yet as we held each other, there was nowhere else in the world I would rather have been.
Unfortunately, she continued to shut down emotionally.
This was one of the most challenging situations I’ve ever encountered. It’s not like I was rushing to engagement. Far from it. In fact, I doubt I would have let myself get so involved if she hadn’t been the one to start with loving comments like, “We make a great team.”
I did my best to make it clear that the outward signs society deems meaningful—cars, houses, and kids—weren’t particularly important. Whether we found ourselves thousands of miles apart or creating a home together didn’t matter as much as honoring a soul connection and a willingness to remain open to wherever that might lead.
Despite my disappointment and frustration with the way our last visit started and ended, I later expressed my gratitude for the lesson she unknowingly taught me. As strange as it sounds given the short duration of our relationship, she made me realize I could not only commit to someone, but do so happily, completely, and without reservation. It was a knowing reinforced at a deep soul level every time I held her hand, looked into her eyes, or thought about her.
Having no intention or desire to pressure her, I gave her all the space she needed. Of course, I hoped she would re-emerge at some point, but she chose not to.
I can’t explain why she impacted me the way she did. In any case, the lack of closure contributed to an ongoing level of uncertainty, disappointment, and sadness. As the one-year anniversary of our last contact approached, feelings of disappointment mixed with a dose of frustration bubbled to the surface. I did my best to hold onto the happy memories and gratitude, but it didn’t always work.
In light of what felt like a year-long emotional circling of the drain, it isn’t at all surprising that I had unknowingly and energetically created an environment in which the lymphoma took hold and began to thrive. Aggressively.
It’s also no surprise the largest tumor started closest to my heart.
Am I saying this was the only factor? Absolutely not. If that were the case, we’d all have gigantic tumors. Instead, I think of it as a contributing factor that operated as a warning sign in the same way congestion and lower back pain shows up in my body. What is true for me is that intensity of the physical manifestation often mirrors the intensity of the underlying feelings. That is certainly true in this case.
Again, I don’t blame her for any of this. How I respond to the circumstances of my life is solely my responsibility. It does, however, remind me of the vital role my thoughts play in my overall well being.
I may be a slow learner, but thanks to the tumors, I finally got the message.
© Rob Sullivan Productions, Inc.