Stage 4 Thinking

Cream was wagging my Coffee.

The best metaphor I can think of is coffee.

 

I used to drink my coffee with cream, or to be particular, with half-and-half.

 

When I stayed in a hotel with a coffee maker in my room, if there was only powdered creamer with the coffee, I'd go down to the hotel bar before I went to sleep (which meant getting dressed again), and ask the bartender for a small glass of half-and-half. 

 

Back in my room, I'd put the glass of cream in a bucket of ice to keep it from souring while I slept.  That's a lot of overhead.  There
were many times at home, after the family went to bed, that I'd realize we were out of cream.  So I'd get in the car, and drive to Cumberland Farms to buy a pint of half-and-half, so I'd have it for my morning coffee.

 

Looking back, I endured plenty of logistical tomfoolery for the sake of cream in my coffee.   It wasn't all so that I could drink cream; it was so that I could drink coffee. 

 

But the cream was in control.

 

The cream was calling the shots. 

 

The cream was wagging the coffee.

 

Until a recent night in Quebec City.  Our hotel room had a late-model Kurig machine, and great coffee pods, but no cream. And since it was a Canadian Holiday, the Bar and Restaurant were closed, along with every store in the area. There would be no cream in Canada that night, or the following morning.

 

When you understand that your time on earth may be more brief than you once imagined, you scrutinize your use of it, and you question the value of various activities and objects in your life. You don’t want to squander your time on pursuits that don't matter.  You think, and want to behave more like an essentialist.

 

You want to spend your time doing things that really matter; things that have an impact.  This often means removing from your life the things that don't matter, and don't create value or meaning.  This process of weeding the garden clarifies your vision and thinking, and creates more space for the things that do matter.  The danger in this is that it exposes the amount of your life that  you've expended time on too much non-essential clutter.

 

The essential pleasures I receive from coffee are the nutty flavor and the caffeine buzz.  The cream it turns out, was clutter.  And for a long time, that cream sucked up tens of thousands of tablespoons of my time and mental energy. I put cream in each of the 3 to 4 cups of coffee I had each day, because I did the day before that. And the day before that.  

 

It's  been 13 days since I've had cream in my coffee.  And now, I genuinely enjoy my coffee black.  I could have been enjoying black coffee for decades.  But I spent those decades chasing cream.  Non-essential cream.

 

There are other forms of cream in my life, and gradually, I'll remove them one by one to expose more of what's essential.

 

What's the half-and-half in your life?

 

Thanks for reading.

What's the main thing that makes us different from earthworms?

Have you ever intended to read a particular book, but never got around to buying?

 

And then after you bought it, never got around to reading it?

 

And after you started reading it, you never....

 

This weekend, I finally finished reading "Man's Search for  Meaning" by Viktor Frankl.   Within the book, Frankl describes his life as a prisoner in the Nazi death camps during WWII, observations of other prisoners and lessons for spiritual survival. 

 

There's a passage in the book that speaks to one of the key observations:

 

"We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread.  They may have been few in numbers, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms - to choose one's attitude in any given set of circumstances, to choose one's own way."

 

Frankl claimed that in the end, the sort of person the prisoner became was not the result of external factors within the camp (regular witness to death, loss of family members, beatings from work foreman, virtual starvation, squalor, sleep deprivation, etc.), but how the prisoner responded to those factors.  And that response is ultimately and entirely the choice of the individual.

 

23 Years ago, I read "The 7 Habits of Highly Effective People" by Stephen Covey.  Within the first chapter on Habit 1 ("Be Proactive"), there's a section with a lot of faded yellow highlighting, about our the freedom to choose.  

 

Covey explains that humans are unique within the animal kingdom, because unlike amoebas, earthworms, rattlesnakes and elephants, we humans have the ability to actually choose and decide what to think, what to do, what to say and how to behave, under any circumstances.  

 

He describes a gap between stimulus (external influence) and response (our behavior).   Within that "gap," we humans can exercise our will - independent of the stimulus - to respond in any manner we choose.

 

An external influence can be anything from a dirty look from a stranger, to unfair treatment by a coworker, a lost job, a cancer diagnosis, or even another blown save by the Red Sox bullpen.

 

Bad shit happens all the time (validated by the proliferation of T-shirts and bumper stickers).  But the good news is, according to Frankl and Covey, we get to choose how we respond to it.  

 

According to Frankl, "in the final analysis it becomes clear that the sort of person the prisoner became was the result of an inner decision, and not the result of camp influences alone."

 

We get to choose how we respond to any situation. Obvious stuff, right? 

 

But how many of us actually do "pause" and choose the best responses, instead of just reacting,  throughout the course of a day?  I know I don't. 

 

But today's a new opportunity.

 

Thanks for reading!

 

 

What I learned by eating alone.

Have you ever wondered why some people seem to be happier than others?

How about an entire culture of people being happier than another culture?

I suspect there are a lot of reasons, but I think I discovered one of them on a recent trip France.

I was there for business, and spent the days in meetings with colleagues in a beautiful restored old building near the Louvre, and in the less grand, but very congenial confines of the company offices. On the final two nights, my American colleagues headed to the bright lights of the clubs in downtown Paris.

The cancer and chemo meds have taken a tool on my nocturnal stamina, so I opted out of the late nights in the city.  Instead, I explored the local neighborhood with its small restaurants and bistros that tourists would never find.

When you're by yourself, you have an opportunity to observe strangers and their behaviors, because you're not busy interacting with your own group. I walked around the neighborhoods, and watched the locals. I noticed how they're courteous, even when they were arguing.

The two guys at the small table two feet from mine were really going at it. But they didn't seem to be pushing their positions at each other; each was politely pleading the other to understand their point of view.  Despite their disagreement, they appeared as happy and as respectful with each other after the smoke cleared

And it wasn't just those two guys in Chez Poupett.

Throughout the week, through interactions in the office, and the restaurants and hotel, the bakeries and coffee shops, the metro and the streets, "respect for other people" seemed as much an ingredient of their culture as Merlot and art.

My favorite manifestation of this respect is the morning greeting in the office:  Each employee walks around the office, politely greet each of their coworkers before settling into their own work space.  They give the men a handshake and smile, and the women a kiss on each cheek.  These morning rounds can take time, that's not the point.  The point is to graciously show due regard for your colleagues.

So, what makes an entire culture of people happier than another culture? Respect may have something to do with it. And respect doesn't have to be legislated. It can be built into a culture on a voluntary basis.  In fact, that's the only way it works.

Life can be short. Show respect for strangers. Start now.

Merci d'avoir lu!

These drugs are incredible.

You should never want to take these drugs, but man, they're incredible.

The results from last week's "brain scan" MRI are excellent - there appear to be no new tumors on my right temporal lobe, and even better, the remnants of the tumors that were there six months ago look like the dead, withered weeds behind my garage.

It blows my mind how the small purple pills I swallow each morning can kill brain tumors.  Kudos to pharmaceutical research.  

The pills may cause a hangover of sore and swollen joints, but the high I get from knowing the tumors are gone (until they return) is worth any amount of pain in my knees.

These drugs are incredible.  They're incredibly incredible.

Thanks to those people in the pharma labs for making it happen.

And thank you for reading.

 

A Little Bit Like Russian Roulette

Tomorrow, it's back into the tube; time for another MRI.  The essential purpose of  these quarterly MRI's is to see if our current chemo treatment is still beating the cancer.

 

We know that at some point - just not exactly exactly when - the cancer will have figured out, through a rare evil of nature, how to mutate around our treatment.  We'll know it's happened, because new tumors will appear on the MRI images.

 

So every few months, the positive guy in me lies on his back inside one of those machines, "to make sure it hasn't happened yet."

 

And before I close my eyes (I like to settle into a relaxing alpha sleep during the process), the realist in me wonders, "Will this be the one?"

 

This cancer experience is a little bit like Russian Roulette.  We know that a future nap in the MRI cylinder will deliver loud, obnoxious, dangerous news.  We just don't know which nap it will be. 

 

And if by chance (or the rare evil of nature) it's tomorrow's nap, that's ok.  We've been down this road before, and there's a new drug waiting.  Let's move on, if need be.

 

Thanks for reading!

Life is often lived by the lesser of 2 evils.

When we switched to the new chemo pill, Lorlatinib in December, we knew there'd be side effects.  The most noticeable have been a stiff jaw (potentially causing slurred speech), increased cholesterol, and joint & muscle pain.

 

There's no medicinal treatment for the stiff jaw, and in fact, plenty of people hoped that would cure my verbosity (they were most indubitably wrong).  I began taking a Statin to lower my cholesterol down to a near-normal level.  And it worked, but not without the side effect of exacerbating the joint and muscle pain, especially in my knees and lower legs. 

 

The Mayo Clinic lists 7 of these Statins. When the one you're taking causes adverse reactions like pain, you switch to one of the other 6.  But we can't do that, because the other 6 have known negative interactions with Lorlatinib.

 

So starting today, we're stopping the Statins.  Not a lesser dose (we tried that, and it didn't work), but none at all.

 

If the pain goes away, we'll know the Statins were the culprit.  We'll keep an eye on the cholesterol level, and having successfully exorcised the pain from my body, we'll celebrate with a big party at our house. Lots of hazy double IPA's and exotic martinis.  And an eclectic mix of music that will keep everybody dancing late into the night. That's what you do, what the pain goes away, right?

 

If the the pain stays, we'll know it's caused by Lorlatinib. 

And that's when we put the pain in perspective by asking the question, "Which is worse - cancerous tumors on your brain, or uncomfortable pain in your legs?"

 

I'll take the pain any day.  Simply having that choice is cause for celebration.  So, let's have the party.  And let's dance.

 

Because we can.

I wish I stopped at The White Horse Tavern.

I just finished lunch with a group of clients and coworkers  in downtown Manhattan.   My next appointment was a few hours' drive away in Pennsylvania.  I had plenty of time to get there. 

 

But I've been late to appointments in the past, when I had "plenty of time to get there."   So about ten years ago, I invented this business travel maxim:  Go to your next destination as soon as you can, to avoid any problems that might make you late.

 

I picked up my rental car, and began driving west on 11th Street, toward the West Side Highway.  I made seven consecutive green lights, and was still in motion.  Now, if you've ever driven in Manhattan, you know that seven straight green lights happens about once in a millennium - and less often on cross-streets. 

 

Coming up at the next intersection was the White Horse Tavern, straight from the 1800's.  The "Horse" is a place where literary icons and longshoremen drank together, and co-existed in near-perfect harmony.

 

Patrons have included Bob Dylan, Dylan Thomas, Jim Morrison, Hunter S. Thompson and Jack Kerouac - the founder of the "hippie" movement.  In fact, Kerouac was thrown of the Horse more than once.  So when you come upon a place like that, you have to stop, right?  C'mon, even if it's just one beer?

 

But I was making the green lights - I couldn't stop.   I was sucked into the northbound vortex of the West Side Highway before I knew what happened.  And by the time I was in the Holland Tunnel, I was feeling the remorse.  I'd realized I made a mistake.

 

If I was back in New York again, under the same circumstances, I'd have turned left onto Hudson Street, found a place to park, walked inside, breathed a few times to take it all in, and ordered a beer. 

 

No, in fact I would have first called my college friend who works in mid-town, and told him I was coming to get him, and that he should take the afternoon off.  Then, he and I would drive back down to Hudson Street, and spend what would inevitably be a memorable afternoon in a historic place with a cold beer. 

 

I don't know about you, but I need to do a better job of living in the moment.  There will always be green lights.  But it's the stuff between the lights that has the meaning.

 

A Shout-out to Jimmy V!

I feel like  the luckiest guy on earth.  We were diagnosed with stage 4 lung cancer over four years ago, and I'm standing here at my desk, writing about it.  

Just 3 months ago, the cancer metastasized to above  the neck for the second time in those four years.  The first time it happened, a then-new chemo drug called Ceritinib erased the tumors within 30 days.  We'd felt like we dodged a bullet.

When this new set of tumors was identified last November, I immediately switched treatments to another drug - Lorlatanib. So far, the Lorlatinib has erased three of the six tumors, and reduced the size of the remaining three.  We fully expect those too to be completely gone by the time I have my next scan.

These "miracle pills" don't just happen, of course.  They're the result of years of research.  And that research has been going on for a long time.  I was reminded of the research, and the people behind it, when I received a text message from our son this earlier this week.

The video he was sending is of an event that I remember watching happen live. 

The video of course, is of the late legendary basketball coach from North Carolina State, Jim Valvano.   Valvano gave what what I consider one of the most inspirational speeches of my lifetime, when he received an ESPY Award for courage, 25 years ago this week. 

It was within that speech that he announced the founding of the Jimmy V Foundation for Cancer Research.  25 years later, a lot of research has been done.  And 25 years later, I'm standing here at my desk looking outside on this sunny March afternoon, in large part because of that research. 

I takes a lot to overcome cancer, and no single factor can do it alone.  But this week, with this video, on the eve of March Madness, let's give a shout-out to Jimmy V!

 

3 Weeks and Feeling Good

Today marks day 22 on Loralatinib, the ALK Inhibitor / oral chemo med that I'm now taking, since we discovered the presence of new (presumably cancerous) tumors on my right temporal lobe.

 

Yup, I just typed "presumably cancerous" with no more angst than if I were typing "presumably partly cloudy."  Excuse me if I come accross as being too cavalier for a cancer patient.  But this placid state of mind underscores the good fortune that I've had along the way. 

 

The good fortune has been comprised of progressive pharmaceutical science, two great oncologists (the second of whom absorbs all the anxiety before it has a chance to reach me), love and caring from family and friends, and a daily spiritual diet of Stoic reading, meditation and India Pale Ale.

 

As for the progress of the Loralatinib, my instincts tell me it's working well, since the headaches have subsided, and the negative side effects are no worse than those caused by the alectinib.

 

We have a consult with the other oncologist on Thursday, and I'll report back from there.

 

Thanks for reading.

Back to the Bullpen

You've heard the story before (I have a high propensity to repeat myself- thanks to my father).  The targeted chemo medications I've been taking work well, until they don't work at all. 

 

With my type of cancer (ALK+ non-small cell lung cancer), the cancer cells constantly work to "crack the code" of the medication fighting them.  The "code" is the medication's "targeting mechanism" that enables it to identify and destroy this specific type of cancer cell.

 

After the cancer "cracks the code," it mutates (changes its own cellular structure) so the drug is no longer effective in fighting the cancer. It's as though the cancer cells were blue, and the medication was designed to target blue cells, the cancer figures that out, and turns its cells green.   The medication continues to target blue cells, so once the cancer cells turn green, the medication is no longer effective.

 

Once the medication can't stop the cancer, ithe cancer can resume doing its job - metastasizing throughout the body. With our type of cancer treatment, the key is to find out as soon as possible after that meds stop working.  It's kind of like a game of roulette.

 

 

How to win at cancer roulette

My body is scanned from head toe every three months to determine if there's any new cancer.  If new cancer appears, it means our current chemo drug is no longer stopping the cancer. 

 

This means it's time to start taking a new drug as soon as possible.  Or in baseball parlance, it's time to yank the pitcher, and go to the bullpen for another pitcher who can keep the cancer from getting on base.  But while there's no time clock in baseball (baseball fans across American would love to see  this change, to speed up the game!), there is one in cancer treatment.

 

Keeping cancer off base

Once new cancer activity is detected, it's important to get on the new drug as soon as possible in order to limit the time the cancer has to metastasize.

 

The most recent scan revealed new tumors - the first in nearly two years. There are five tumors appear on the right temporal lobe and frontal lobe of my brain.  That's the bad news.

 

The Good News

The good news is that there are currently two new drugs that didn't exist (at least, not in their current FDA-approved state) the last time tumors appeared on my brain.  That's when we made a quick change from Crizotinib (chemo drug 1) to Ceritinib (drug 2).  Within six weeks of starting Ceritinib, the brain tumors were gone.

 

A lab in California is currently analyzing my DNA to determine which of the two new drugs will be most effective in treating the cancer.  We'll have that decision in about 10 days.

 

An Early Christmas Present

But in the meantime, we'll be taking Lorlatinib because we need to take something to stop the  cancer in my brain from spreading.  UPS is scheduled to deliver my first monthly supply of Lorlatinib today - call it a Christmas present, a few days early.

 

So fear not - between the medication (which has proven effective at each step during the past four years), the knowledge of our oncology team (including M.A.), and the love and support of family, friends, colleagues and  positive spiritual energies, I have full faith that we're on course to stay ahead of the cancer.

 

Onward

And if on the off chance that one of the two new drugs is not effective, there's still  another pitcher, er, ALK-positive drug in the bullpen.  Let's play ball, and continue to beat this thing!!!

 

Merry Christmas, and thanks for reading!