Stage 4 Thinking

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!

 

Looking Back and Moving Forward

Thanks to David Stimac Photography for this inspiring image of contrasting life within the stillness left by storm.

 

At this time of year, we tend to look back over the past 12 months and think about where we've been, what we've done, and what the next year is likely to bring.  Or better yet, what we want the next year to bring.

 

Yesterday afternoon, M.A. and I met with our oncologist for a routine consultation.  (Actually, there's not much "routine" about a cancer consultation. Perhaps I meant "regularly scheduled," but I didn't take the time to edit, because I'm in a hurry to go out and snow-blow the driveway before it freezes.)

 

The oncologist's primary message yesterday was that last week's clean MRI of the brain was a good sign.  As the brain goes, so goes the rest of the body.  In other words, if the brain scans showed no sign of cancer, it's likely that the cancer has stabilized within the body.  

 

But just to be sure, we have another PET scan scheduled for January 5.  But we're optimistic.  And why not?  As I've said before, there is little scientific evidence to  support the idea that worry heals.

 

So, this holiday season, I'm looking back over not just the past 12 months, but the past 36, from when the cancer began.  It started out as a turbulent journey, but lately the sailing has been smooth.  And it looks to be smooth into the year ahead. 

 

I'm feeling good, and grateful for it.  And grateful for your attention, thoughts and prayers.  Now, if you'll excuse me, I've gotta get to that snow before it freezes.

 

Happy Holidays, and thanks for reading.

 

 

Another Day, Another Scan

This morning at 10am, I'll be going into the imaging center at Mercy Hospital's Fore River Campus to have my head scanned, via MRI.

They'll be looking for lesions on the brain, and tumors on my retinas. 

The scans will most likely reveal nothing.  Well, not nothing - there are billions of active cells up there - really! -  but no lesions or tumors.

That's the way these scans have typically gone in the past.  They're a precautionary tactic intended to identify small, potential problems before they become bigger, active problems.

This scan is not one of the routine quarterly scans, though.  

I told my oncologist - not M.A., but the one with the one with the M.D. after his name (but I did tell M.A. too, in case you're wondering) - that I've been experiencing some mild headaches lately, and that my vision is less sharp.  So, he ordered the Scans.

Personally, I think the headaches may be caused by the constant parade of cartoon characters that have the power to shape the future. 

The blurry vision?  Blame that on age, screen time, or even some over-hopped unfiltered Double IPA's.

Stay tuned - I'll let you know how things go.

And as always, thanks for reading.

(Update, 6 hours after the Scan:  Our oncologist's office called to tell me that the scan was negative, as in everything is OK - great news headed into the weekend!)

 

Thankful

I'm thankful for beating the odds.

I'm thankful for M.A.'s constant love and support.

I'm thankful for children who make me proud every moment of every day.

 
I'm thankful for siblings who've given me memories and lessons for growing, learning and navigating life.

I'm thankful for friends who support me, despite my moody moments.

I'm thankful for colleagues who appreciate my effort, passion and quirks.

 

I'm thankful for the dedication of those whose research has lead to targeted chemotherapy treatments.

I'm thankful for cancer patients before me, who inspired the research lead to the creation of my treatments.

I'm thankful for the opportunity to contribute data to support the creation of more effective treatments, for future patients.

 

I'm thankful for seeing physical setbacks as opportunities for recreation.

I'm thankful for seeing illness not as illness, but as an opportunity to grow resilient and evolve into a better person.

I'm thankful for your taking the time to read my rantings.

 

I can go on, but we have guests arriving soon, so I'll stop here.

And for that, we can all be thankful!

The 3 Stages of Change

One of the challenges of living with cancer is having to adjust your lifestyle.  The effects of cancer prevent you from participating in activities that were formerly part of your daily routine.  They also force you to cut back on other activities that contributed to your enjoyment of life.   

 

Losing those activities is a significant change.  It forces you into uncomfortable adjustments.

 

Enduring Change

 

Before talking too far about how change impacts the patient, I want to clarify something:

 

Many of the cancer-related changes impact people beyond the patient.  They impact the patient's family, friends and coworkers. 

 

For instance, M.A. has taken on more cancer-related anxiety and caring than I.  She's had to tolerate my (grumpy) attitude caused by my not exercising.  And she's tolerated my quirky sleep schedule.  She's endured a lot of change.

 

And enduring change is a challenge.  The change hits you every day with feelings of void and frustration.

 

Accepting Change 

 

Endurance implies a finish line.  And the finish line is where the discomfort ends, and the return to "normal" begins again.  Endurance means pushing yourself through the discomfort until you reach that finish line. 

 

And once you get there, you celebrate the victory of having outlasted the discomfort brought on by the change.  Then life returns to normal.

 

But what if there is no finish line, and return to "normal?"

 

A greater challenge than enduring change is accepting the change.  Accepting is when you acknowledge that there's no finish line and that yesterday's "normal" won't return.

 

Last week, I met with an orthopedic surgeon who's been monitoring the compression fracture in my spine.  For the first 24 months of treatment (bone strengtheners and reduction in physical activity), there was noticeable healing.  

 

My optimistic self assumed the healing would continue, and in time I could start skiing again and putting in full workouts at the gym.  But the images from the recent CT & PET scans said otherwise.  

 

The fracture is still very much a fracture, and the surgeon believes the healing has stopped.  This means I'll have to live with a very delicate spine, and treat it accordingly.  It means there's little chance I'll ski or engage in hard-core sweaty workouts again.  

 

So far, accepting the change is more challenging than enduring  the change.  But I'll get there.  I know that because I see other cancer patients in the oncologist's office, and they're facing changes that far more extreme than mine.  Seeing them, and imagining what they're going through causes me to think, "Who the hell am I to complain about the changes I've endured?!"

 

Harnessing Change

 

Back in college, I remember riding a chairlift up Vermont's Mt. Ellen with an older gentleman.  I don't remember the entire conversation, but I do remember him telling me,  "In every problem, there's an opportunity."  

 

That seemed profound at the time.  (Though the threshold for profundity and wisdom isn't particularly high for most 21-year-old males.)

 

I'm accepting the reality that I probably won't ski again, nor do many of the physical activities that I've loved doing throughout my life.  But stopping at acceptance won't be enough.  There's a void now, and a gut feeling that the void should be filled with something.  Something positive.   Otherwise, the void becomes a psychological cancer of its own.

 

We need to take it a step further; we need to fill the void with a new passion; something productive; something that's emotionally fulfilling.

 

I don't know what that is, but I'll figure it out.