Stage 4 Thinking

Off To See The Lizard

Dear Readers, Friends, and Supporters,

It is with great sadness that we share the passing of our beloved father, husband, and author of this blog, Jim Watson, on October 2, 2020.

As many of you may be aware from his last few blog posts, Jim’s cancer metastasized aggressively in recent months. Despite the success of radiation to the metastasis in his shoulder and the temporary success of his old friend Lorlatinib at targeting the metastases in his liver, our father’s condition changed course and rapidly deteriorated in the past few weeks. He continued treatment and fought like hell until the very end.

There is no denying what anyone who has lost a loved one to cancer already knows: the loss is devastating and feels painfully unfair. Along with our pain, however, comes an overwhelming sense of gratitude—gratitude for the advances in cancer treatment that allowed our father to live with a Stage IV diagnosis for nearly six years, for the fact that those advances allowed our father to live a surprisingly normal life for more than five of those years, for the medical providers and caregivers who stuck with him at every step, for the endless support and love we have felt since Day 1 of his diagnosis and that we continue to feel even in his absence, for the contagious positivity and optimism our father exhibited throughout his entire battle with cancer, and for the gift that he was able to share the ups and downs of his journey with all of you through this blog.

Since the inception of this blog in February 2015, our father found comfort in sharing his story and connecting with others who have experienced, continue to experience, or have had loved-ones experience similar battles. It is our sincere hope that anybody who reads this blog will appreciate the lessons our father learned and shared in the same way that we do; he truly lived every day like it was his last and sought out silver-linings in even the darkest moments of his illness. To anyone reading this who may be fighting their own battle with cancer: we are inspired by your fight and your strength and we are here to support you should you ever need us.

Jim Watson was an amazing man who lived a fulfilling and loving life in spite of his disease. May we all approach life with the same strength, vulnerability, and enthusiasm as he did.

With love and gratitude,
Jim, M.A., and Shea Watson

Our father’s obituary can be found here.

The Dog Days & Proton Radiation

Where We Left Off

The last post described  the upper-body imaging process, and what we saw in the Brain MRI, Shoulder X-Rays, and Back MRI.  What the post didn't do, was drag you through the radiation treatment.  That's what we'll do here.  But let me warn you - it's not a pretty process.

 

How about a Quick Word about the Weather First?

 

I'm about to describe an uncomfortable treatment process.  For full context, this occurred during our most hot and humid days of the summer, when COVID-19 regulations were in full force and draconian entrance policies at the Radiation Treatment location compounded to create the most uncomfortable patient experience we've endured during the five-and-a-half year journey.

 

Oh, we got through it, by the way!

 

 

The External Photon Radiation

The first thing to know about External Photon Radiation Therapy is that is that it is not a comfortable process. In fact, it is downright uncomfortable, if not painful. 

Each cycle doesn't last much longer than 15 minutes, but it is 15 minutes of physical, mental and emotional torture.

 

The Treatment Schedule

Most people have treatment once a day, Monday through Friday. The number of treatments vary from person to person based on details about your cancer, such as the type and stage of the cancer and the size and location of the tumors.   Being a garden-variety guy, I had ten treatments over ten consecutive weekdays, which is fairly standard.  

 

Now that I've lulled you into a state of normalcy, I'll wake you up with the violent truth.

 

A Vicious Process (Stay Still, or Else!)

There are two things to know about Proton Radiation:

1. It is a very uncomfortable process.
2. If you move, you must start all over again.

 

Throughout the entire process, you must remain entirely still.  My technician warned me that if I attempted the slightest twitch to adjust my comfort, we'd (I) would have to begin the process from the start.  And keep on doing it until we got it right.

 

So in additional to the experience of physical pain, Radiation Therapy becomes a  form of cruel psychological torture.

 

Forget About Comfort.

Since the Radiation process is all about preventing motion (and thereby comfort) 99% of the chamber's design focuses on physical restraint.  To liken the entire experience to that of a medieval torture chamber would not be off the mark. There's a reason that the National Cancer Institute posts this video on its website.  The video teaches you how to relax your body to minimize the  pain and discomfort during radiation therapy.

 

 

What's the Point of Radiation Again? 

With all this talk about pain and discomfort, it can be easy to forget why we subjected ourselves to this experience.  Truthfully, that's the most import part of this post, so let's jump in (but don't move too much!).

 

The last round of imaging showed that our cancer had metastasized again, this time with new tumors in the shoulders, and a thumb-sized one next to the spine.  The Proton Radiation was intended get rid of those tumors, and stop the further spread of our cancer.

 

(A Side Note of Good News: Tumors that are close to the spine (ours was) can cause neurological damage.  Our did not!!!)

 

How Proton Therapy Works (If you Really Want to Know...)

A machine called a synchronous or cyclotron speeds up protons. The high speed of the protons creates high energy. This energy makes the protons travel to the desired depth in the body. The protons then give the targeted radiation dose in the tumor.

With proton therapy, there is less radiation dose outside of the tumor. In regular radiation therapy, x-rays continue to give radiation doses as they leave the person's body. This means that radiation damages nearby healthy tissues, possibly causing side effects.

 

All's Well That End's Well... So Far....

The point of all this treatment and discomfort is to put me back together, and put us back together so that we can live life (nearly as) fully and even more happily than we did before we had cancer. 

 

While new bumps continue to appear, we're finding that those bumps give us the strength to continue the journey.  Yes, that sounds cliche, but cliche's become cliche's for a reason.

 

As for the most recent Proton Radiation with it's pain and discomfort, all of the tumors appear to have been eliminated, so the pain is just a hot summer memory.

 

Beaches, Barbecues & MRI's

Summer weekends are normally spent relaxing on beaches or around backyard barbecues.  Hopefully that was the case for most of you.

 

No so for M.A. and me, especially during the month of July.  We spent much of that leisure time at the MRI, CT and X-Ray imaging machines at Maine Medical Center trying to understand the progression of our cancer. Here's what we learned from the imaging during one week in July...

 

Monday was an above-the-neck MRI.   

 
Over this 5+ year journey, we've had dozens of above-the-neck MRI scans to check for the spread of cancer to the eyes, brain and other areas above the neck. 

 

Those scans have identified new cancer in the temporal lobe and the right frontal lobe of the brain twice, and the retinas of the eyes, twice.

 

This July's scans revealed no additional metastasis.  That's good news!

 

Wednesday was  shoulder X-rays.

 

For the first time, I've been experiencing pain in my shoulders, and  X-rays revealed new cancer where there was none before. Or in the words of the radiologist:

 

"The image reveals a new osseous metastatic disease." 

 

That means we have a new tumor on the scapula bone of the shoulder. 

 

While the actual data wasn't good, there's always a silver lining -  the tumor could be eliminated through a relatively easy procedure -  radiation therapy, which I'll explain more in a minute. 

 

 

Friday was a mid-back MRI.

 

One of the greatest areas of pain during that month of July was in the middle of my back.  That Friday's MRI results showed a tumor measuring 2cm X 5cm to the right of the T6 and T7 vertebrae in my thoracic spine (see the diagram to the right if you're curious for more.)

 

While the cancer spread to the back in the form of a fairly large (the size of the end of your pinky finger) tumor, there were two silver linings to this dark metastasis:

 

Silver Lining #1: Tumors in and around the spinal column can cause nerve damage.  This tumor is just far enough from the spinal column to not cause any neurological damage.  

 

Silver Lining #2:  

The tumor was easily treatable, through radiation therapy.  At high doses, radiation therapy kills cancer cells or slows their growth by damaging their DNA. Cancer cells whose DNA is damaged beyond repair stop dividing or die. When the damaged cells die, they are broken down and removed by the body.    

 

Where do we go from Here?

That week's scans have shown us that the cancer hadn't quit.   At five years, six months and 11 days after our original diagnosis, we'd have hoped to have beaten the cancer by then.  But that's not how it works when there is no cure for the disease that's inhabited your body. 

 

But let's look at it another way - a positive way, from the actual statistics:

 

Based on the date of our original diagnosis (January 15,  2015) and average survival date for 50+ year-olds with non-small cell lung cancer,  our last opportunity for a beach day or barbecue would have been January 14, 2020.  And weather-wise, January beach days aren't a big draw in Maine.

 

204 Days in the Bonus and Counting...

Yet here we are, 204 days past the 5-year mortality date, still gracefully fighting the battle.  And if you're not out on the field fighting the battle, you can win the battle.  

 

Thanks for reading.

 

 

 

 

Thoughts on Meditation

Anxiety can get in the way of a good time.  Because we let it.  

 

When Happy Hour isn't Happy

Have you ever been to a happy hour and not felt happy?  You're standing among friends with beverages in hand on a sunny outdoor deck.  The right music is playing in the background, and the moment smacks of happiness. 

 

But you're not happy because your mind isn't in the moment with the sunshine, your friends and the music.  Instead, your mind is focused on an email that your boss sent you that morning.  You've allowed your mind to drag you back to a moment that may not even matter. 

 

If the email does matter, there is nothing you can do about it in the present moment anyway.  But still, you're worried about, and that worry is spoiling the good time that you could be having.

 

 

Too often, we allow external thoughts to hijack our consciousness, and prevent us from experiencing the moment we're in.   

 

Cancer's Buffet of Dark Thoughts

One of many things I've learned through five and half years battling cancer is that the disease offers an "all-you-can think-about" buffet of dark thoughts.  Here're three of those thoughts from the past 10 days.  Some are repeats, and some are originals...

  

• I've been experiencing pain my shoulder for the two weeks, so we're doing diagnostic imaging  next week to determine the cause of the pain.  What if  the pain is  is caused by new metastases?  
• If  there is new metastases, does that mean that we've squandered three precious months of opportunity to slay the beast by using an ineffective treatment?  
• Can this be the start of a downward spiral toward becoming a statistic?"

Notice how each of those thoughts contain phrases that make the thoughts uncertainties?  Phrases like "What if" and "Does that mean" and "Can this be?"

The point is that we can allow ourselves to be seduced into a state of doom and gloom, if we don't have a way to filter out those dark thoughts.

 

 

The Great Discovery of Mindfulness

When I was first diagnosed with cancer, a friend recommended that I try meditation to manage the imminent anxieties that come with cancer.  Hearing about meditation's inherent ability to control one's consciousness made me curious.  

 

I'm a certified master procrastinator, so I didn't try it until two years after my friend recommended it.  

 

Meditation enables you to control your state of mind by "boxing out" thoughts that attempt to wander in.  And if you can prevent thoughts from entering your mind, you're controlling your state of mind, and how you experience each moment.   

 

That's the essence of mindfulness.  So how exactly do you do that in the  21st century?

 

There's an App for that.

Effective meditation - doing it so that it actually works - is a very nuanced process that can be difficult to figure out on your own.  At least it was for me.   I found it very helpful to have someone (or the voice of someone) guide me through the process. 

 

In the 21st century we're in, that "someone" is often a virtual someone, through an app on your phone. There are plenty of good meditation apps available.  The one I happen to use is called "Headspace."

 

Like any new skill, meditation takes regular practice to be effective, as in every day. My sessions have lasted anywhere from five minutes to a half hour, depending on what else I have going on in my world that day.  The more you do it, the better it works.  It might only be 5 - 10 minutes each day (though more is better), but doing it regularly is what made it work - for me.  Your mileage my vary.

 

Unplug Your Monkey Brain

If left alone to operate as they choose, our brains can behave in primitive ways, causing us to become the kind of person that we wouldn't invite into our own dinner parties.

 

(Recall Graucho Marx' remark upon being denied access to a particular social club: "I wouldn't want to join a club that accepted people like me anyway.")

 

Regular meditation has enabled me to prevent negative thoughts from entering my mind in the first pace, and if they do get past the gatekeeper, giving me the ability to snub them out before they "metastasize." 

 

By having greater control over my consciousness, I'm able to better focus on where I am, and what I'm doing at the moment.  

 

I wish I started sooner.

Three years into my meditation practice, my only regret is not having started earlier in life.  After all, it's been around for thousands of years, and I've only been around for the last 60, so there's been plenty of opportunity for me to start meditating sooner, and enjoy more moments of my life.

 

But I'm not going to dwell on missed opportunity.  In fact, I'm going to filter all thoughts of regret out of my mind, because I can.  Meditation has taught me how to do that.

 

And the cool thing is, you don't have to have cancer to meditate; anyone can enjoy the benefits of meditation.  All you need to do is block out a few minutes each day to do it  Then do it!

 

Thanks for reading.

 

Do you want to be happier? Then change your expectations.

About 17 years ago, I planned a weekend family camping trip, but I didn't check the weather forecast.  Fortunately, M.A. did.

As I packed the kayaks, Frisbees and other outdoor essentials, M.A. presciently packed inside-the-tent games, playing cards, and food that didn't require cooking.

Friday night anticipation

After pitching the tent on Friday night, making S'mores and telling stories around the campfire, my excitement for camping shot off the charts.  We then slipped into our sleeping bags, and went to sleep.

I awoke Saturday morning to the rat-a-tata-tata-tat of rain on the tent. Friday night's anticipation was washed away.

When it came time for breakfast, I'd never been so happy to see a box of Nature Valley Granola Bars, because I didn't have to go out in the rain for food.

After a few rounds of the granola bars and a few games of Yahtzee, I realized that we were having genuine family fun, despite the rain.

It wasn't the outdoor fair-weather fun I'd originally expected.  But once I accepted the rain as part of our weekend, I knew we could still have fun.

Fast forward to the present.

Six years after we packed up that soggy tent and headed back to Portland, M.A. and I had the first of many meetings with our oncologist.  He explained how life would be different living with lung cancer.  Then he asked me if I planned to continue working.

It never occurred that not working could, would or should be an option.  Work gives our lives meaning, so I thought that removing work from my routine would reduce me to a full-time cancer patient.  And that was neither whom nor what I wanted to be.

Time to re-set

Five and a half years after that conversation, and after subsequent encouragement from friends, family and the same oncologist, I've acquiesced. Since early July, I've been on 8 to 12 weeks of leave from work.

The original intent of the leave was to provide a physical and mental re-set. Before the scheduled leave, I'd been taking a couple naps each day to offset my physical fatigue.  While on leave, my plan was to replace time spent working with time reading, writing and other mindful activities.  

A large part of the reset was to come from daily sculling on the Back Cove.  I no longer have the strength or stamina to break a sweat in dry air, but rowing still provides the thrill of being out on the water, inhaling the salt air and propelling a single scull with my own mind and body.  It's a zen-like experience.

Things change in ways we least expect.

A plan is but a plan.  A few weeks before the start of the leave, we learned that the cancer had spread, and we'd need to shift into a more aggressive chemo regimen. I was experiencing more pain, and near constant fatigue.

I became too tired to even read or write as much according to the plan.  And the level of pain in my lower back and abdomen combined with the near-constant fatigue has kept me mostly off the water.  And that sucks.

When you can't do what you'd plan to do, you become easily frustrated, and unhappy.

Inspect what you expect.

The key to staying happy when things don't go according to plan, is to re-calibrate your expectations.  Under the new circumstances, I'll be happy to get on the water once or twice a week. I won't read as much, and I won't write as much. But mindful thinking and breathing with your eyes closed is better than other alternatives.

And perhaps best of all, I'll spend more time with our son (who has returned to Maine for the summer) and our daughter.  We'll have the entire family in Portland for the summer. And who knows.... we may pitch a tent in the backyard when the forecast calls for rain, and crawl inside to eat granola an play Yahtzee.

Happiness is hinged to your expectations.

I may not be doing the things I originally looked forward to doing this summer, but that's okay. Since I've reset my expectations to align with my new reality, I'll still be happy.

It's not a matter of lowering the bar. It's a matter of re-aligning the bar. And that's something we should all consider doing more often, as the situations around us change.

Thanks for reading!

Friday Afternoon Biopsy

Friday afternoon, I was lying on my back as a radiologist inserted a probe beneath my rib cage and into my liver.  With the probe firmly in place, he inserted another instrument inside it that would allow him to scrape a small sample of a tumor, and the surrounding healthy liver tissue.

 

He did this five times, in order to gather enough tissue to obtain a genomic profile of my liver, and the tumors inside it.

 

The profile will help to answer two questions:

 

1. Can my liver withstand a severe side effect of Avastin? 
   There are currently two drugs in my chemo cocktail.  We want to add a third drug starting July 14 - Avastin.  But like most chemotherapy drugs, Avastin is not without side effects, and one of the more serious ones internal bleeding. 
   
   If my genomic profile indicates that I'll be susceptible to internal bleeding, we'll have to scratch Avastin from the plan, and find an alternative.

 

2. Another card to play? 
   The genomic profile will also help determine if I'm a possible candidate for certain trail drugs.  In cancer and in baseball, there are advantages to having multiple pitches to throw in tight situations. 
   
   When a pitcher learns to throw a new pitch (e.g. a split-finger fastball) to complement his fastball/curve ball/change-up repertoire, he has another option to use, to get a batter out.  Options are good, in baseball and cancer.  

 

There are a lot of reasons to want to add Avastin to the mix.  Certainly it will increase our chances of beating the cancer.  But it will also reduce our household expenses on hair grooming products and services.

 

We expect to have the results of the biopsy within a few days of this post.  Until then, I'm going to listen to some '80's music, and watch my hair grow!  ;-)

 

Thanks for reading.

 

(Click on the image below, to enjoy classic 80's rock, as performed by guys with classic '80's hair.)

It's Time to Take a Break.

We've been riding this roller coaster for more than five years, and it's time to get off.  I don't mean "get off for good."  No, we can't control that.  That's largely in the hands of medical science, biological chance and spiritual forces.

 

Hitting the Pause Button

I'm talking about taking the next two or three months off to catch my breath, reflect on where we've been, where we may be headed, and what we're going to do along the way.  This means not working for the next few months (and saying a big thanks to my employer for making this time off possible).

 

Sunrise over the Back Cove in Portland, Maine June 27, 2020, 5:01 am

I'm talking about taking time to clear my mind and gain a fresh perspective on my life, where it's going, and what I'd like to accomplish during however much time I have remaining.

 

What's the Purpose of Life?

When we ask ourselves what we'd like to accomplish in our lifetimes, it begs the question, "What is the purpose of life?;  "What are we supposed to do with our time on earth, and why?"  

 

I don't know the answer to those questions.  And that's one of the ironies of life - you get one shot, but you can't draw upon your experience - at least not you own experience.   But we're free to draw upon the insights of other people, so that's what I'll do...

 

I happen to like Dr. Steven Covey's answer to the question, because it's simple and it makes sense to me.  And I do love alliteration.  According to Dr. Covey, purpose of life is to live, to love, to learn and to leave a legacy.

Looking Back and Thinking Forward

During the past 60 years, or as I like to say, during my first 60 years, I've had the good fortune to enjoy many life experiences, and to love a woman who has exceeded all my hopes and expectations of what a life partner should be.    We've also been fortunate to raise two smart, creative, beautiful and witty children, and watch them begin to evolve into the adults they're wired to become. 

 

Yes, I feel I've been fortunate - damned fortunate.

 

Feeling that that I've already fulfilled two of Dr. Covey's four tenets of a life well-lived lived (please understand that I intend to continue pursuing both), I'd like to focus here on the other two:  learning, and leaving a legacy.

 

On Learning

The ability to learn is uniquely human.  While other animals have some capacity to learn, they cannot learn as deeply, or on such a variety of subjects of their own choosing, the way we humans can.  Personally, I'm fascinated by that.  There's so much that I would still like to learn.  Call it the curse of a liberal arts education. 

 

I plan to read a lot during my break; read about history, read about technology and read about the origins and evolution of Traditional Chinese Medicine and about education and sociology.  

I also plan to write a lot during my break. That writing, along with our children, will become my legacy.

 

What's a Legacy?

A legacy is more than something that you leave behind after you're gone.  A legacy is often thought of as the thing by which you'll be remembered.  But it can be more than just a memory; it can be something that others value for reasons of their own choosing. 

 

A good legacy can  contribute to and enrich the lives of others in some utilitarian, aesthetic, educational or financial way.

 

If I take inventory of what I've acquired during my lifetime, it's learning and experience that most come to mind.  Through writing, I'd like to share some of what I've learned so others can learn it more efficiently, and skip the trial-and-error process.

 

I'll write it.  Nobody may ever read it, but it'll be there if they so choose.  And to those who do, I'll simply say what I always say...

 

Thanks for reading.

 

 

Another Turn in the Road

Have you ever planned a road trip that didn't meet your expectations of joy and adventure, because of sudden changes to your travel plan?  

 

Changes can spoil the experience - or not - depending on your viewpoint.

 

You can fixate on where you're going, or you can fixate on how you're going to get there.  If you stay focused on the destination, you're more likely to experience that joy and adventure despite the disappointing detours.

 

Focus on the Destination, not the Route

Over five years ago, we began this journey to beat cancer.  Our navigational app, or GPS has been the quarterly scans from my head down to my hips - MRI's, CT Scans and PET scans. 

 

Recently, those scans have been spotting hazards that have caused us to re-route.  

 

Big re-routes can be frustrating.   You may have planned your trip in detail along the fastest, most reliable route.  You see sunshine in the forecast.   

 

The road you chose had rest stops every 30 miles or so with healthy food options (if you're into that), coffee shops emanating a fresh-roast aroma, and plenty of big clean restrooms with no lines.  You even compiled a playlist with music and podcasts to enhance the joy of the journey.  

 

You strap in, adjust the volume on your playlist, and everything is going smoothly.  You're feeling good.

 

 

Re-routing

Then a couple hours from home, your navigational app interrupts your playlist.  It's suggesting a re-route. 

 

That's what happened to us last week on our journey to beat cancer. The CT scan found some new road hazards, causing our oncologist to recommend some significant changes to the plan.

 

Our final destination - cancer-free living - remains the same.  We're just going to have to  take a different route to get there.  

 

The new route may not have those rest stops with healthy food, aromatic coffee and spacious restrooms.  Instead, we may have to seek out random convenience stores that keep yesterday's pizza slices under a heat lamp, and have a single small restroom with a line of fellow travelers in front of us, that makes us contemplate holding it in for another few miles.

 

Is Joy in the Journey or the Destination?

It's been said the joy in life lies in the journey rather than the destination.  Cancer changes that.  There's little joy in the journey itself (aside from the love and caring from family, friends and colleagues).  Instead, the joy lies in positive anticipation of reaching the destination, supported by a willingness to be flexible along the  journey.  

 

The "hazards" identified by last week's CT scan are new tumors in my liver, and enlarged lymph nodes along the arteries above and below my kidneys.  The good news though (you always have to find or fabricate some!) is that the plearual effusion has stabilized and for now, doesn't have to be drained.  

 

 

Nine New Tumors in the Liver

Those road hazards in the liver  are nine new tumors.  Or, to quote from the radiologist's written analysis, "Unfortunately, the patient has developed multiple new low-density lesions throughout the liver... These most likely represent new metastases."

 

(Side note:  I found it interesting that the radiologist revealed his humanity by using the word "Unfortunately."  These scan analysis are typically written in a purely scientific manner devoid of any empathy or emotion.  But this time was different. 

 

It's comforting to know that our scans are being analyzed by a flesh-and-blood fellow human instead of a heartless algorithm.  While I'm all for the thoroughness of artificial intelligence and machine learning that will eventually interpret these images, the human in me appreciates the genuine compassion that can only come from a fellow homo-sapien.)

 

Big Fat Swollen Lymph Nodes

That word, "unfortunately" appeared a second time in the analysis, where the radiologist describes the enlarged lymph nodes.  I'll spare you his arcane details. 

 

Essentially, several lymph nodes have increased  significantly in size since the April 10 scan.  Lager lymph nodes in a cancer patient typically indicate that the cancer is working harder to multiply.  And when cancer wants to multiply, it usually finds a way if we don't take steps to stop it.

 

Re-routing with a new Chemo Treatment

Since the cancer has spread, we're changing the chemo meds to  Paclitaxel, Bevacizumab and Carboplatin.   Carboplatin was included in the first round of chemo from January through March, but later removed because it was causing too much nausea.  That's the comforting side of chemo treatment - it balances efficacy with quality of life.

 

Stay Agile and Expect Change

Always expect change - sometimes drastic change.  Then when it happens, it's easier to deal with, and most important, it won't erode the positive outlook that's so important.  

 

There's always a chance we'll get stuck in traffic, and we won't always be able to get a latte the way we like it.  But if we stay willing to change our route to reach our destination, we'll be more likely to experience peace of mind, and prevail.

 

Thanks for reading.

 

 

 

 

 

Waiting in Limbo - or not.

Have you ever drained a bathtub, only to have it mysteriously fill up again so that you'd have to drain it again, before it fills up again, and before you drain it again?

Wouldn't you want to know what's causing the tub to keep filling up?

 

In the May 22 post, I described how 1.5 liters of fluid was removed from the space around my lung; a condition known as a pleural effusion.  It was the fourth time in 3 months that that amount of the fluid had been removed from my chest. 

 

But even after the procedure, another 1.5 still remained.  That was removed the following Thursday.  Expectations were that I'd be breathing easily with little to no discomfort by the weekend.

 

What's that quote about keeping your expectations low to avoid disappointment?

 

Anyway, the following Monday, my breathing was shallow, and painful.  We took some X-rays to see what was going on, and sure enough, the pleura that was emptied on Thursday was no longer empty on Monday.   Over the course of the weekend, another liter of fluid had accumulated in the area around my lung.   

 

Now, there was a time in life when it may have been perfectly reasonable to wake up after a weekend to find a liter of weird stinky fluid sloshing around inside my abdomen.  But my lifestyle has mostly evolved since those days.

 

The mystery continues.  

What's causing the fluid to keep coming back?  We don't know.  But we'll find out.  Finding out will help us determine if we need to change our overall cancer treatment.  The way to find out is through imaging - images that will highlight the location of active cancer cells around the lung,  and how fast they're growing.  

 

PET Scans are really good at providing clues in  situations like this.  If you read the April 17 Post "Keeping Score in the Battle Against Cancer,"  you know that PET Scans are the gold standard if you should ever want to measure the location and avidity of cellular activity in your abdomen.  So, the plan was to get another PET Scan. 

 

A Short Rant about our Health Care System

The oncologist thinks a PET Scan is the best path forward.  And the doctor knows best, right? But due to the current structure and philosophy of the health care system in our great industrialized country, our insurance companies would not pay for the expensive effective PET Scan, because I had one  as recently as April 10.   They will gladly pay for the CT Scan and if that fails to inform us, they'll consider anteing up for a PET scan.  We know we need a microscope to see the level of detail required to make the best decisions about treatment going forward. But he insurance company insists that we use a magnifying glass first.  

 

Meanwhile, another couple weeks will likely pass as we wait for the approval and scheduling of the PET Scan.  That's another couple weeks for the cancer to do its thing, before we'll know if or how we should alter the treatment (different drugs, different doses, different frequency, etc.)

 

Next Steps & Some Good Stuff

In the meantime, I'll be relaxing in the chemo recliner on June 15, for the fourth and final session of this second round.  On June 16, it's into the tube for the CT scan.

 

On another positive note, acupuncture resumed last week!  I began getting regular acupuncture treatments  last September, and it's proven to be one of the most effective treatments for pain, fatigue and anxiety that I've  experienced in my 60 years so far. 

 

So losing access to regular acupuncture treatments for a long three months during the Covid shutdown was  like not having morning coffee for 3 months.  You definitely miss it while you don't have it, but you don't realize how much you missed it, until you have it back again.   It's good to be back.

 

Portland's Back Cove with the Eastern Prom in the background.

Back on the Water

The rowing scull is down from the garage rafters, and poised on the rack at the end of the driveway.  It should be gracing the salty tidal waters of Portland's Back Cove within the next week.  I won't be rowing particularly hard or fast, but that's not the point.  The point is to get outside into the fresh air, and do something that makes you happy.  Get the blood flowing, even if it's just a little.  Enjoy the scenery.  

 

It's summertime on the coast of Maine, so what can be better than this?   We may not like waiting in Limbo for answers to questions about malignant pleural effusions, but the good news is we have other happier things to occupy our minds, bodies and spirits. 

 

The information will eventuality arrive, and we'll take the action we need to take.  But in the meantime, there's a lot of good stuff going on, so let's enjoy it.  After all, isn't that what life should be all about?

 

Thanks for reading.

 

 

It's ok to be Vulnerable

About 38 years ago, I volunteered to carry a keg of Genesee Cream Ale up three flights of stairs, and down the hall to a friend's apartment.  My friend had a broken leg, so carrying the keg for him felt like the natural thing to do.

 

Hauling the keg up the first flight of stairs was easy, though uncomfortable.

 

It got a little heavier on the second flight, but I kept on going despite the burden.

 

But by the time I got to third floor landing, the keg was heavier than I could handle, so I stopped to put it down onto the dark green carpet that looked like it hadn't been cleaned since it was installed a decade prior.

 

I sat on top of the keg to catch my breath.  What first seemed like the natural thing to do had become more than I could handle.  I needed a break.

 

Positivity has been a challenge lately.

 

About five and a half years ago, when we first learned about the cancer, I vowed to stay positive.  It seemed like the natural thing to do.  But lately, staying positive has become a heavy load.

 

Covid makes everything heavier.

Covid has created new burdens for all of us.  Everyday living has become heavier.  And the burdens we were carrying before Covid have become a lot more noticeable, and a lot less bearable, when compounded by Covid. 

 

We're all social animals, and most of us crave interaction with other humans.  Covid's shelter-in-place has taken that away.

 

And nobody knows how long Covid will last.  That uncertainty throws more weight onto the anxiety scale.

 

Covid + Cancer = WTF

But it's not just the Covid that makes it more difficult to carry a positive outlook.  Lately, the cancer has been messing with me too.

 

I had my fourth thorecentisis last week, to relieve the pressure on my left lung caused by a  pleural effusion.  Just like the first three thorecentisises, the machine sucked a full liter and a half (the maximum amount that considered "safe" to remove during a single procedure) of that cancerous spewage from my aching abdomen. 

 

And after those first three times, the pressure on the lung was relieved, and I found it easier to breath, laugh and bend down to tie my shoes (not a huge benefit, since I normally wear Crocs, and as any footwear aficionado knows, Crocs don't have laces).

 

But this fourth thorecentisis was different.  It didn't relieve the pain because there still remained  another 1.5 liters of the fluid in my chest.  So we're headed back to the pump next Thursday to finish the job.  But the big question is "why so much more fluid, so soon?" 

 

Why does the cancer, that was supposed to be shrinking, continue to spew this fluid at a rate faster than before?

 

Then there's the new metastisis in my lower back, that snuck its way into the otherwise positive PET scan from April:

 

"There has however been interval increase in FDG avidity associated with a metastatic lesion at the junction of the right L3 transverse process and pedicle, in which location SUV max presently measures 8.0, previously 3.8. There is a new intensely FDG avid lesion seen posteriorly within the L2 vertebral body with SUV max of 11.6. Metastatic lesions affecting the posterior left sixth and seventh ribs have increased in FDG avidity."

 

Why do I continue to have these plerural effusions, and new metastisis?  It's like the cancer is trying to outlast me. 

 

Ideas like that have been haunting me in the middle of the night, and causing anxiety during the day.  It's like my brain is getting tired after five and a half years of carrying positive thoughts (to prevent negative thoughts from creeping in).

 

It feels like it's time to take a break. It's my party, and I can be  vulnerable if I want to. 

 

After all, being vulnerable is an essential human trait.   Just like social interaction, and carrying kegs upstairs.

 

Thanks for reading.