Saturday, July 02, 2016

Deforestation #1 – Here we go!

Hi Folks,

Looking back at the days coming up to and including my first infusion, I have focused deeply on the tactical (logistics of wrapping up work, thinking thru the impact of finances, etc.) not the intergalactic (cancer, perhaps?).  There was just too much to do for the distraction of fear right now; as a single dad, my boys in particular were my greater concern. Clarifying and prepping for treatment was the best course of action.

And divulging my thoughts? Initially that was a nutty notion. I am pretty private about things. But I do have a variety of notions, poorly formed, swirling around in my head.

Here are some thoughts as I went into infusion #1…


I really do have cancer, eh? Some part of my has been in denial, perhaps in part due to how long it took to know what I had. To a limited degree, the realization has made me ponder what I have done, not done and the overall trajectory of events in the past 5 decades. And the value of urgency. All too often, I have mixed together status, wealth and experiences. I have never been in a deep rush to acquire the former two, but in the process have many times bundled in the latter also, despite the fact that I deeply value the latter. The question is will I act on what I will have learned from this journey? Some people know that time is fleeting, that at any point their time may expire, and therefore make a move now.

Concentric waves of shock. The initial news from the ENT surgeon had little impact on myself. Partly from reading The Emperor of All Maladies, and partly due to incidences of cancer in my extended family and network of friends, I had logically painted myself into the notion that if this thing in my throat was not bacterial or viral, it was some manner of cancer. Sharing this with mom, dad, Susan and Cindy was must less difficult than I had expected. So too, telling Paul and Sidd. Perhaps I saw the need to be steady in their presence.

But for some mystifying reason, telling colleagues and friends just about split me in two. And I still don't know why.

Scott was the first colleague. At a number of points along the discussion, I had to stop talking so as to quell this intense wave of emotion. As if it was a person sprinting towards me, I could see that crying hurtling towards me as I continued to speak… 3 seconds from impact, 2 seconds, 1 second…. Silence halted this intruder. I don't know why my emotions reacted like a volcano undergoing electric shock, nor why I did not want others to witness this. Both were personal mysteries. The same reaction occurred with the 2nd, 3rd and 4th person I spoke to. Yet each iteration had a lesser effect on me, to be clear. Perhaps when I told my immediate family it had not yet sunk in to my own persona, or my desire that it land gently with them gave me no choice than to subjugate my feelings. Or I "felt safe" with the first friends I informed, unbounding my clearly cantankerous emotions.

I still marvel at how Scott was instantly empathetic that I was about to discover my own news would be personally cataclysmic. He remained still, listened and then shifted into gently, peacefully sharing advice that was crystal clear. He and that call were a gift.

Words of genuine warmth.  After crafting a gameplan, I realized the need to tell immediate colleagues of my impending departure to ensure a smooth transition. I do think I shocked them ( it has sunk in for me, but was or still will be news to them ). I was surprised by their positive & bullish comments back to me. It has made me much more aware of the blessing to have a remarkable cohort of colleagues.

The more I learned, the more bullish I felt… For nearly a month I had not gained clarity on the nature of the cancer nor what the risk level. This had forced a mental exercise of ignoring all possibilities - - good and bad - - until I heard more. Now that it's clear that it is two locations near each other, that they were still pretty manageable in size, that I have access to a drug trial that sound less esoteric and more about adding firepower, that my oncologist is both smart, open and likes photography also :) I am frankly more bullish. Coming out of the discussions with Dr. Shustov and my former boss Dennis Reilly, I felt confident that I can beat this. God willing, to be clear.

Bullish can bring bad tendencies. One chronic failure that recurs is opting to go it alone as the first option. When mom and dad strongly suggested that people join me for the infusion cycles, frankly I was scratching my head. Until then, I was not sure why I needed help from other people. Perhaps the separation had forced me to live much more on my own for a couple of years and now it was more force of habit. Just drive in, get the meds, drive out, right. But given how the first round went, I am deeply grateful that my parents prevailed and my mom's younger sister, Regina (we call her Regi Auntie) and then my mom's younger brother Mathew (Machayan) came in to assist. In dozens of ways large and small, they were irreplaceable.

Why the surprise that life is more finite than planned? Given the advances in medicine, diet, exercise and mindfulness, for many years I have had the target age of 120 for myself before I conk out. (Ray Kurzweil has been gushing about what's coming in the next 30 years - all you have to do is not die.) And by 120, Paul will be 80 and I will see how his kids and Sidd's kids are faring. But now, I realize such a target is, well, nothing more than a target. What am I doing today to make it great, in case it is my last?

This is not my father's healthcare - it's pretty impersonal... My dad is a retired Board-certified general surgeon. At his retirement, a host of his patients joined with nothing but regret that he was wrapping up - grown men had tears in their eyes. That is my benchmark when I think of medical care.

My venture into cancer treatment was a 3 point landing - the first two were on the bumpy side due to the same dismaying behavior. The ENT surgeon Dr. Heydt called to confirm initial tests indicate lymphoma, and then shared that she had referred me to a "Dr. Dean" - - but when I simply asked for the first name, she pulled up a blank. "I don't know his first name" was the answer. So perhaps "Dr. Dean" was simply a girl or guy on a list? I can understand if it's a recommendation for a burger joint, but an oncologist?

As puzzling is this occurred AGAIN in meeting with Dr. Dean (I did learn his first name). He was referring me to a lymphoma specialist, and said, "yes I spoke to a Dr. Shustov at SCCA." When I asked for the full name, he looked at his iPhone, then his laptop, hesitated, then scratched out something on a Post It note. "My nurse will get the direct number." Later, she frowned when looking at the name on the notepad and the SCCA web site, finally saying, "just call their general number and they will connect you." Why the confusion: Dr. Dean wrote down "Andrew Shuster" instead of "Andrei Shustov" - is this how the rest of the journey will be?

…And healthcare can be pretty discombobulated. My pathology reports took nearly 4 weeks - just think of not knowing what is really going on for a month. Even Shustov was puzzled. "This is why we prefer to do everything here - it's all in one system, we know who to call, things keep moving." Each time I called Dr. Heydt's office the response was the same - - we don't have an ETA. So I finally decided to visit in person, and in typical fashion, one harried looking person clearly resolved many matters in the office. She took charge. Literally in 15 mins, two phone calls and one fax later, we learned the specimen from my tonsils went to a second lab but without Dr. Heydt's name on the order, so it was sitting there. For 12 days. Nice.

We question bad news, but never good news. Why?  People challenge God when calamity strikes (that seems human and reasonable) but I find we don’t do the same over the blessings granted to us. For example, “Why did you give me the chance to work with these ridiculously amazing people?” "Why did I wind up with two great sisters?" "My parents are remarkable. Why me?" Every blessing is a mystery yet we have no issue taking them without scratching our small heads and asking why and how that came about, no?

Worst-case mapping. One habit since about the age of 16: when something worries me I think of the very worst outcome I can. For some odd reason it calms me down. And clarifies what I may need to do soon and for the longer term. My current worst case scenario is somewhat straightforward: the treatment fails, there is follow-up which hobbles along and I pass away. Suddenly I became aware my real worry is for the boys along two dimensions important to myself: constructive engagement as they grow and develop; connection to my side of the extended family. I fear both will diminish if they spend all their time with their mom (to whom I am separated). She is not nearly as engaged in their lives as I am - - no interest in their hobbies and extracurriculars. To add to this, she has methodically and purposefully disconnected from both her own extended family and most certainly from mine. That's a shame as my mom is from a family of 7 kids, my dad of 14, and that results in literally scores of interesting cousins and a host of colorful aunts and uncles. They would mostly vanish at least until the boys are no longer minors. Hmmm… yet this clarity of what's bugging me does erase some of my angst.

The good outstrips the bad. I have been loosely summing up aspects of my life into "goodness" and "badness." Without even really putting much rigor into it (so many things to do right now) I can see that goodness is way, way out in front. I have been dealt many great hands, if I choose to look across many of them at the same time. For me, it's as if I have boxed the cancer into a smaller, more confined space.

I have certainly been in the midst of refined beings. One great treasure plopped into my lap is that I have been able to spend time with people who are unfathomably remarkable, beginning with my mom and dad. One is lucky to get lunch with folks like them, let alone a lifetime. It has made the quote below by Chardin come to life, many, many times.

In Closing, Some Quotes from Broader Minds

Teilhard de Chardin, Jesuit priest and idealist philosopher
We are not human beings having a spiritual experience.
We are spiritual beings having a human experience.

Mahatma Gandhi
Live as if you were to die tomorrow.
Learn as if you were to live forever.

It is just the beginning of what will be another amazing, sunny summer. Do get out and immerse yourself in it.


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