Impatience is an Argument with Reality

My new friend Bernie Koehrsen posted this the other day. He ran across it reading a book about patience. In the book, there was this quote:

“Impatience is an argument with reality”

Several people responded to that, and felt a connection. I assume these people have been frustrated, and later learned that the “rock” they were pushing uphill, the thing that frustrated them, turned out to be the Universe and not some person, or rule. In hindsight, it was never something they could have influenced.

Stay with me… I bet some of the salmon swimming upstream are really frustrated by those waterfalls. while others are having fun. Some of them are probably competition-Salmon, trying to outdo each other, to see which one does the best leap. 20% are griping about the whole thing. Likely talking about the old days when the falls were higher or the water was colder. When bears were bears and fish were men, or something.

Arguing with reality reminds me of the futility of griping. If your lot is to swim, you should learn to love the leaping.

Personally, I think cancer taught me this lesson. I know that seems like a tangent but, again, stay with me.

Sitting in an exam room on the 14th floor of a hospital in downtown Philadelphia, an intensely earnest genetic counselor shared with me, and my wife, that my cancer was likely “terminal”, her word. She showed me a scatterplot diagram illustrating the disease outcomes for a thousand or so patients in my cohort, people with the same type tumor according to the tumor’s DNA . The dots were all deaths, dates on the chart indicating how long after diagnosis.

In the moment, the dots looked like a murmuration, where birds fly in a tight group all together, with a leading edge and a stream of dots tapering off. Not many people died right away so, left to right, there were only a few dots on the left but they grew in density moving to the right, sort of like the pattern the birds make. Before twelve months, on the chart, there were only a few. Twelve to twenty-four months, there were dozens. Twenty-four to thirty-six months, the dots melt together into clumps. Thirty-six to Forty-eight months still dense but starting to taper off. Then, four years and out, there are fewer dots than in the first year.

The counsellor struggled to tell me that meant, based on the experience of the people in the cohort, I was not going to live more than about forty months, most likely less. Things changed for me and my family that day, but it took months of therapy to make sense of it.

In 2008, after ten years in business, the other founding partner at my company retired and I became CEO as well as President. So, in 2011, I had been in charge for three years and my company had just launched a new software product. It was a huge deal and cost millions to execute. I had speaking engagements all over the country on the schedule including a high-profile panel discussion at the Clareity MLS Executive Conference in Scottsdale AZ. Plus, my wife was scheduled to go with me. Since we were going to be empty nesters in the fall when our second daughter went to college, there were big plans.

But, life had other plans. After the diagnosis, I went back to the hotel and started making calls to my team telling them I could not make it. I suggested we push back our release plans and cancel the trips. My daughter called and said she was reconsidering going off for college and staying home.

Instead of cancelling everything, my team stepped in and did all the work stuff with confidence and ability. Several stepped into senior roles, maybe a little early, and are still killing it out there in the world, including my brother. Amazing, good things came of it.

I had to focus on setting my family up for success after I was gone, and maybe even surviving although the odds were very low. I went on to get two kinds of chemo, plaque radiation behind the eye, lots of lasers, three surgeries; basically everything they could throw at it and I lived. And the kid went to college and, so far at least, everyone lived happily.

I did not learn patience easily, and I still struggle. But I did learn this huge take-away: the universe does not care about my expectations. After all of this, I made a list of things that are most important to me. When I was finished, I found that I personally did not make the list. Everything on the list was about someone else and all of it is more important than me: my wife’s happiness, even her future relationships if I don’t make it. My daughters’ futures, my granddaughter’s happiness, leaving the place better than I found it, supporting people who need a hand, I mean, those things will last and I won’t. None of us will.

Ocular Melanoma, Five Years Out

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This is Deadly, We’re Sorry

So they started by saying “This is deadly, we’re sorry.”  Five years ago today, February 23rd 2011 is a day that forever changed my life, for the better. I will retell the story briefly, so I can guide others to survival and also have the opportunity to thank a few amazing people who helped me along the way.

First. On the fateful Wednesday February 23rd, I went to see Dr John Cox for a routine eye exam. I was experiencing what I describe as “looking up from underwater” out of the corner of my  right field of vision. John was sure what I had, he told me it was cancer and sent me immediately to the next step, an Ophthalmologist/Retina Specialist.

So on the same morning that I went to see John, I was sent over to Dr Jim Byrne, a family friend, who happened to be off that day. John and I called Jim and he met me at his office anyway. After a few minutes looking at the tumor, Jim confirmed the diagnosis and said I needed to go to Birmingham or Vanderbilt, my choice. He said they would likely refer me on to another center, probably Wills in Philadelphia. Jim also asked me that day what I was afraid about the most. I told him that was an easy one, the loss of contact with my loving family, and the waiting for test results. He told me that Doctors have a name for that period between the scan and the results. It’s called “life”. You can choose to spend those hours or days however you choose, the outcome does not change those days. It was excellent advice.

Next was a visit to Dr Paul Sternberg at Vanderbilt Hospital the next day, Thursday. Dr Sternberg is a wonderful guy and he spent lots of time with me. At the end of the tests he told me to go back home and get a chest x-ray, a liver MRI and bloodwork to see if the cancer had already metastasized into the body. If it was they would recommend a different course of treatment since melanoma mets is universally fatal. Dr Sternberg also said that sometimes a doctor’s best course of action is a good referral.  Due to the seriousness of my case he recommended Wills Eye in Philadelphia as Dr Byrne had expected.

High Scanxiety

The next day was high-scanxiety Friday as my doctor, Ramann Nallamala, scheduled the tests. By mid-afternoon we were cleared for the trip to Philadelphia after a very tense and stressful period of “life” as Dr Byrne called it. By Sunday night we were in Philadelphia preparing for our appointment at Wills the next morning.

Monday morning February 28th we met with The Doctors Shields, the team of Jerry and Carol that wrote the textbook on treating eye cancer, literally.  They were professional and reassuring and deeply knowledgeable about their field. Being there gave me a comfort I can’t explain but it was empowering and timely. They told me to come back the next day for more measurements and to plan on two surgeries: one Thursday to install a radioactive plaque opposite the tumor inside my eyeball, and another one the following Monday to remove it.

After surgery we went home and tried to get back to life in the new normal. To help with local emergencies should they arise I reached out to a local oncologist and old family friend to help me schedule tests etc. Dr. Marshall Schreeder at Clearview Cancer has since helped me navigate treatment, he’s wonderful and I love his whole family.

70% Chance of Death from Metastatic Melanoma

Three months later we went back to Wills to receive the results of the genomic testing. Those results indicated that I had a 70% chance of metastatic spread and death from the disease within 48 months. That was the roughest news we received during the whole treatment period but it put us on a path of aggressive treatment to which I credit my survival.

That treatment included Avastin shots into the eyeball, one every three months for two years. In year two I also started on oral chemo called SUTENT prescribed by my Medical Oncologist at Thomas Jefferson Dr Takami Sato. Sr Sato is a rockstar in the treatment of metastatic melanoma and a great guy too. Also, to finish treating the tumor after plaque radiation I had TTT (Transpupillary thermotherapy), a laser beam aimed through your pupil to burn tissue on the back of the eye. Together these treatments have beaten the odds, I am still alive and not metastatic, and I have 20/40 vision in the “bad” eye. Amaxing.

So, after all of that, I am 60 months out today from diagnosis. Drs Cox, Byrne, Sternberg, Nallamala, Shields, Shields, Sato, and Schreeder have formed the dream team for me and I thank them so much for my site and my life.