Stage 4 Thinking

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!

 

Collateral Damage

It's been a while since I've written here (that's a terrible way to open a blog post, isn't it?), so I'll take you back to the beginning for a quick refresher...

 

About four years ago, I sustained spinal compression fracture.   At time, we didn't know I had lung cancer that had already spread, or metastasized to my bones.  So the fracture was actually a good thing.  It caused us (It's not just me - M.A. has been taking on the emotional and logistical workload so that I can focus on the treatment) to get medical attention which revealed the cancer in time for us to take action.

 

The "action" has primarily been oral chemotherapy - powerful drug capsules that target my particular type of lung cancer (ALK+ non-small cell).  Without getting technical (to avoid being wrong), these drugs attack the cancerous cells to prevent them from metastasizing further.  The drug is designed to identify the cancerous cells by their' genetic structure.  It seeks out and destroys the cells comprised of said structure.

 

But cancer is an evil genius.  

 

Cancer is an insidious disease. When attacked by chemo, these cancer cells don't just shrivel up and die; they figure out that they're being targeted according to their genetic structure.  So, they do what any smart evil cell would do - they mutate, or change their structure so they will no longer be found (and destroyed) by the chemo drug.  

 

If you've read this blog before, you may be familiar with my cancer-treatment metaphor: "Going to the bullpen."  When the pitcher is no longer getting batters out, the manager puts a different pitcher into the game, before the other team - the "bad" guys - gets too far ahead.

 

Well, we use a similar tactic in ALK-positive non-small cell lung cancer.  When the chemo drug is no longer destroying the cancerous cells, the oncologist recommends replacing the chemo drug with a different one that the cancer cells won't recognize.  The new/different drug is intended to put us - the "good guys" - back in the lead.

 

The Battle isn't just black and white. 

With cancer, there are lots of battles within The Battle.  And many of these inner battles cause "collateral damage."

 

The summer of 2018 was a great summer.  With my own rowing scull, and a scenic salt water cove 90-seconds from the house, I was able to row almost whenever I wanted lot.  And early morning walks around The Cove were  opportunities to get philosophical while watching the sun rise. 

 

Ah, but all  this came at a cost.  While I was enjoying these experiences, my hips were working overtime (overtime, at least, for hips whose bones were covered in lesions, or "cancer scars".)  Walking and rowing at relatively moderate pace didn't feel  strenuous.  But my left hip quietly disagreed.  

 

It's not cancer, but its collateral damage caused by cancer.  

 

The moderate activity caused a hairline fracture that has become the literal pain in the ass.  Treatment is a steroid injection.  We'll know within about two weeks if its effective. If not, we'll move onto physical therapy.  

 

Challenges are not always clear black or white, or simple win-or-lose.  As we  successfully face challenges, there will often be collateral damage along the way.  I think it's our ability to expect, address and look beyond the collateral damage that enables us to sustain a clear vision to the positive outcome.

 

Thanks for reading.

 

Thanks to Cory Templeton for this great shot of Portland's Back Cove.  For more, go to Cory's Site.

 

Back at it.

Hey, I'm back.   It's been 5 months since I last wrote on this blog wall.   I'll offer both an apology and a  "you're welcome" for the absence.  Choose one.

 

It's not that nothing has happened since April 7.  There's always something kicking around in the mind and body of a cancer patient (and I dare say, more in the mind).   Cancer is an ugly monster that scares the hell out of us because we know that if it gets inside us, it can take our life away, and we don't know how to universally stop it. 

 

That's a very reasonable fear that can trigger a lot of unreasonable thinking.

 

The chemo drug I've been taking for the past 18 months continues to be an  effective treatment.  The cancer is still in my body, but it's been contained to specific areas, without growing or metastasizing.

 

I haven't become complacent in this good fortune, because I'm reminded of the cancer each time I stand for long periods, get out of a chair in the evening, or try to "go hard" while rowing, or even swimming.  The pain I'll feel at those times is a reliable reminder of my angry bones.  

 

I've accepted the fact that my bones will always remind me that they're scarred from lesions.  So when the pain occurs, I acknowledge it, and move on.  But there are still times when I worry.

 

Here's an example:

(Backstory:  M.A. gave me a rowing scull for Fathers' Day, so I've been doing a lot of rowing this summer (rowing and swimming are the 2 sports that the "angry bones" can handle).)

 

In July, I began to feel a new pain in my left abdominal area, and grew concerned.   That's what happens - with any new  pain, particularly in the general area of the cancer, your paranoid mind tries to convince you that the cancer has begun to spread again.

 

I called the oncologist first.  They ran some imaging that did not reveal any cancerous activity in the area of the pain.  Next, I called the Orthopedic group that treated me for the various bone ailments brought on by the cancer.  They found nothing in the bones or muscles in the area.  The final stop was our General Practitioner - he diagnosed and treated something that needed to be treated.  But the bottom line:  My pain was not from the cancer.

 

Focus on your unique individual situation.

The point is this:  Cancer can put your mind into an unhealthy overdrive.  Sure, there's a lot to be  stressed about, but the stress can be managed through a clear understanding of the facts - your facts, not  the facts you find on Google.  Google facts tend to present a broad homogenized mathematically-averaged population

 

Know what you can control.

The other factor is control - understanding and accepting what's within your control.  Stressing about something that's beyond your control is a very unhealthy trap.  If you can't control something, acknowledge its presence, and move on.  You still have a life to live, and pissing away moments by worrying about something over which you have zero control is throwing away moments of  happiness, love, laughter and those other emotional elements that comprise a rich life.

 

 

But those are limitations I've accepted.  Like a rainy day, it can limit your plans, but you make adjustments, and somehow figure out how to get from the day, despite the foul weather.

 

A good friend of mine was recently diagnosed with a challenging form of cancer.  He begins treatment today.  He's studious and thoughtful, so I expect he'll learn quickly how to manage the experience effectively for himself and his family.

 

May his journey be as positive and enlightening as mine has been.   And every bit as successful.

 

Thanks for reading, and for offering your positive thoughts for my friend.

The Power of Peace of Mind

We all have stress in our lives.  And cancer throws more on the pile.  About 18 months after my diagnosis, I began meditating on a daily basis.

 

Prior to  that, mediation was in  my  "someday" pile.  A few close friends meditated, and I'd talked about  it  with each of  them, so it wasn’t  a foreign thing.  But I never really tried it until  I did.

 

But now that I’ve been doing it regularly for over a year, it's like drinking 8 glasses of water a day - regular meditation keeps my mind "emotionally hydrated."  

 

My experience has convinced me that the peace of mind gained from meditation is something that can improve anyone’s life - regardless of what’s causing their stress or anxiety.

 

Meditation (and M.A.) is helping me mentally deal with the cancer thing.  But meditation has been beneficial beyond dealing  with the stress from cancer.. 

 

The same emotional skills which meditation has given me to deal with the fact that I have cancer have proven equally effective in mitigating stress and anxiety in other areas of  living.

 

Meditation is one of those practices that I wish I’d started earlier in life.   But hey - I don’t stress about that - I’m just glad that I have it now.  

 

Thanks for reading!

 

(If you're curious, go to www.headspace.com It's easy  to  get started, easy to do, and  easy to  make  it  a part  of  your daily routine. )

The difference between disappointment and enthusiasm depends on your view.

Often, the problem isn't what happens to us, but how we respond  to what happens.

 

Swimming laps at the Y is a great example.  But first, a little "back story"...

 

My Prior rants described two ailments (spinal compression fracture, and persistent pain in my knees, thighs and hips) that have  prevented me from doing many of  the  physical activities that I've loved:  skiing,  running, cycling, hiking, and just about  anything  that put up-and-down pressure on the legs.

 

For a month, I pretty much stayed off my feet and out of  the gym to see if the leg pain would subside.  Most of it did.  So, the goal became finding a fitness regimen that would provide a thorough full-body aerobic and muscular workout, without pounding on my legs.

 

Swimming's the answer!

 

Swimming isn't entirely new to me.  In fact, I  used to swim regularly - not because I liked it, but because it was like "homework" for competing in triathlons.  I  you didn't do regular swim  workouts, well, you'd  pay dearly.  I did it, but I didn't look forward to it.

 

But swimming is different now that it was then. 

 

The pool's the same, the  equipment is mostly the same (though thankfully, men's  swim suits are longer in 2018) , the smell of chlorine hasn't changed, and the water is still the same temperature at 6 o'clock in the morning today as it was at 6 o'clock in the morning 15 years ago.

 

What's different now is the way I look at  swimming. 

 

I figured out (with help of friends and a little research) how to  make it more interesting.   I've added variation.  For example, I never felt like swimming did much for the legs.  But then a couple weeks ago,  M.A. gave me a cool pair of kick fins.   They give the legs a good burn, but without the pain I'd get from activities like cycling or a session on the elliptical trainer.  

 

There's a lot of newness to this old sport.  But again, the sport hasn't changed.  My approach to it has.  And that's what's made it new.

 

The disappointment and self-pity perpetuated by something that I could no longer do has been replaced by enthusiasm for something that I can do.   And that's made a huge difference.

 

A Life Lesson through the Loss of a Friend

It's been said that the quality of our lives is determined by the quality of our relationships.

Do we give all our relationships the attention they deserve?

 

One of my best friends from high school died unexpectedly earlier this month.

The last time I saw him was 2001.  Our next conversation - and our last - was in 2015.  He called me after learning that I had lung cancer.  

 

At his memorial service, there was a montage of photos depicting his life, and through the other people in each of those pictures, his relationships.   There were a few photos in which he and I were smiling, laughing and up to God-knows-what.  We had a lot of fun.  We spent a lot of time together.  We attended each others' weddings.  Then geography and the changes brought on by adulthood crowded out our friendship.  

 

My lack of initiative to pick up the phone or plan an extra stop-off on a family vacation made the geography greater than it was.  The more I think about it, the root cause of many fading friendships is the same as the root cause of most lost opportunities in life.  It's procrastination.

 

"Today is too busy.  I'll call tomorrow."   

"It'll be a hassle to squeeze a half-day side trip into next week's business trip through New  York; I'll see him next time I'm in the area, instead."

 

The trip to attend his memorial services caused me to realize how easy it would have been, to see him sooner.

 

 

How I Survived 5 Days in France without a Cell Phone

 

 

Have you ever gone someplace, and realized you didn't have your phone?  That's an "Oh, Sh-- moment" for most of us. 

 

It certainly was form me last Tuesday afternoon, as I was headed to the airport for a 5-day business trip to Paris.  

 

Yeah, yeah, I hear you ...  "How the heck do you forget your phone when you're leaving home for a week?!?"  Just ask me sometime, and I'll gladly tell you.  (It can happen to anyone over the age of 31.)

 

But like the stranger in the chairlift told me nearly 40 years ago,  in every problem, there's an equal or greater opportunity.  Once I performed a little mental triage, I was in a better position to enjoy life without my cell phone.  Seriously.

 

 

Stay with me for another minute, and you'll see.  But first, let's walk through that triage process...

 

Managing the Mental Crisis

Once I was sure that I  didn't have my phone (e.g. is wasn't on silent and tucked inside by briefcase), I methodically evaluated the degree of damage, and devised a contingency plan.  It went something like this:

 

What functions do I perform on my phone? 

I call M.A. and work colleagues, do email, access documents in DropBox, read the news, take photos, read and post to social media, check the weather, request an Uber, navigate via GPS and online subway maps, text with Jim & Shea, log stuff in Evernote, and more.  Yup, there's a whole lot of stuff that I do with my phone when I travel.

 

How many of those functions will be essential for this trip?  

I was going to an annual company meeting, and all my colleagues would be there.  So, I'd only need to make calls to M.A.   I had my laptop, so I could use it for email.  I'd still need to access local transportation (the Uber, GPS, subway maps).

 

How many of those essential functions could I perform without my phone? (100%).

When I needed (or wanted) to make a call, I could use a colleague's phone.  Even most strangers will gladly help a person in phone need.  We often overlook that.  

 

In situations where I'd normally order an Uber or Lyft, I could hail a taxi.  Yes, taxis still exist, and you can order one just by waving your arm.

 

And when I'd need to get around the Paris subway system, I could use a paper map. It might require a bit more mental navigational energy, but as my mother used to say, "Make a game out of it."  

 

It would be like orienteering.  There's nothing wrong with stretching your mental muscles now and then.

 

What I Learned from the Disconnected Experience

 

Living without conveniences can make us more resourceful.  

Our lives have become so digitized that we rely on our phones for nearly everything but personal hygiene (though there's probably an app for that).

 

Navigating the past six days without the convenience of my cell  phone caused me think more creatively in accomplishing small tasks that I'd normally manage through an app on my phone.  

 

And there was something fulfilling about living in the late 20th century again.  Being forced to regularly overcome 21st century inconveniences can make us more resourceful, and better at solving problems.

 

Shutting off the fire hose requires you to think more.

I did a lot of "meaningful thinking" the past five days.  When you don't have your phone, your access to information feels cut off.  With less information flowing into your mind, there's suddenly a mental void that needs to be filled.  And that's where the opportunity happens.

 

We get to decide what content will fill the void.  

And in that fleeting moment of choice, we can pause to identify our priorities.  Our time is limited, yet we spend so much of it pre-occupied with things that really don't matter.  When I had to "think about what to think about," I did so with greater intention, and a greater sense of purpose.

 

When your fast-thinking mind screams about a crisis, ask your slow-thinking mind, "What's the worse thing that can happen?"

 

We often allow ourselves to go into crisis mode what there really isn't a crisis.  By taking a moment to assess the real situation, we can identify the true problem.  And the act of thinking through solutions can leave us better prepared to handle the next crisis.  That is, if it really is a crisis at all.

 

Thanks for reading!

A Big Barrier to Health Care: Location, Location, Location

Thanks to the Portland Press Herald, for showing it like it is when snow falls on the Turnpike. 

 

 

Friday's PET Scan has been postponed to Monday.   Not because there 15 inches of new snow in our driveway Friday morning (my John Deere snowblower kicks ass.).  And not because the staff at Mercy Hospital didn't make it into work (they're Mainers; they're used to getting where they need to go, and some say this storm was only a winter warm-up).

 

The Scan was rescheduled because the PET scanning equipment couldn't make the drive from Massachusetts to Maine.  No, PET scanners don't drive, but stay with me for a minute...

 

Most hospitals don't have PET scanning equipment.  They're only found in major cancer hospitals like the Mayo Clinic, or Dana Farber.  But enterprising companies like Alliance Health Care  take the PET scanners to the patients who are located far from the major hospitals.  And that's an advancement in health care.

 

Too many people suffer poor health, or worse, because the patient's location makes treatment inaccessible   This is often from the lack of distribution systems to get the "care" where it needs to be.  

 

A great example of "pragmatic care distribution" is the delivery of mosquito nets to remote rural areas in Africa.   With support from UNICEF, about 44,000 mosquito nets were distributed in communities and health facilities across Angola’s Bengo Province during one month in 2016.  These nets were preventive treatment for 44,000 people who desperately needed it.  Getting treatment to the point of need is a huge barrier in health care.

 

So, we're grateful for service providers like Alliance Health Care.  Instead of investing an entire day to travel to Boston and back, I can drive 5 easy miles to the mobile PET scan facility at Mercy Hospital in Portland.  There have been a lot of advancements in health care and cancer treatment in the past decade, and it's easy to take some of them for granted.  

 

Sometimes it takes a snowstorm to remind us how lucky we really are.

 

Thanks for reading!