With Deep Sadness

It is with deep sadness that I write that Antone Clark passed away January 18, 2015. He passed from complications of amyloidosis. We thank you for reading and supporting him during his time of trails.

Antone Lee Clark
July 29,1954 - January 18, 2015

Keeping Up Apperances

At times the quest to deal with physical deterioration, especially for one as young and big as me, is to deal with appearances. 

When you’re over 6-5 and appear robust you should act accordingly, or so the social norm suggests.

Hyacinth Bucket from Keeping Up Appearances

After three-and-a-half years of heart deterioration that got to the point of discussions of heart valve replacement or an actual transplant, before treatment of my AL amyloidosis (which spurred all of the heart issues) took me a different route, I am especially in a tough place in the appearance process.

I qualify for special considerations like you can’t believe now.  It’s not that I would always want them----quite the opposite.  I have a handicap parking permit but have learned from sad experience that is hardly a remedy at all.   I now actively seek out electric carts if I go out shopping.  I can easily get in trouble without one. In some of the big boxes, I don’t go any further without them.  I simply can’t afford to pass out on a hard floor or have an incident that spurs a medical intervention, from people who wouldn’t have a clue of how to treat my situation.

It’s easier to get out with an electric cart than to cause panic, and end up on a gurney headed towards the back of an ambulance.

My eye opener occurred in the WinCo in Roy, Utah around Thanksgiving where the length of the store caught up with me and had me unable to recuperate by taking a knee. I was rescued by an astute store employee who quickly got me an electric cart and allowed me to sit down, function and finish my transactions, instead of taking an ambulance ride.  She literally saved me with her kind act but the incident was a tough lesson:  appearances or not, you need extra help!

The looks I get sometimes in stores, especially from the elderly would be hard to categorize, now that I seek out the carts.

Made me think of a British comedy, which I will watch when Cindy isn’t around called “Keeping Up Appearances.”

The well written tales involve an eccentric social climb Hyacinth Bucket who is determined to look for chances to climb the social ladder and portray herself as among the elite.  The stories are enriched by her interactions with a neighbor, a priest and a slovenly brother-in-law.  To add to the delight, Hyacinth’s discussions about her perfect son Sheridan, always bring an easy grin.

The show only had a five -year run but are so well written they still easily cause a laugh in me, as Hyacinth pushes the extremes with her attempt to appear to be something she isn’t.

I am a poor Hyacinth.  I don’t look like I should merit any special attention, even if medical reality suggests otherwise. 

The other day at Wal-Mart a clerk was kind enough to chase 50 yards to the other side of the store to get me a cart, so I could actually shop.  In doing so he pulled up just as an elderly woman, who looked to be in her 80s, went in search of a cart.  The cart was given to me and the nice clerk went in search of another.  The look from the elderly woman was classic.

What was a “healthy” looking male like me doing taking a cart?  Besides a look of loathing, her eyes seemed to convey the message she was female, old and doesn’t walk well. I found myself thinking---only momentarily---would you rather pick me up off the floor, or worry about your legs aching a little?

It took hit another level this week when I was in a Costco, following my wife with a cart, and a woman, who had served on the Farmington City Council and dealt with me for over a year or so, saw me and greeted me warmly.  Seeing the cart she asked innocently enough if I had just gone through knee replacement surgery. A short explanation and she understood.   Ironically, I was on the way home from a chemotherapy session. 

So I’m a work in progress.  I don’t want the appearance of being sick, or sickly or dying, but I still need the special considerations.  Hyacinth I could use some help keeping up with appearances!

Feeling the Effects of Dragon Poison

One of the big challenges of handling any significant challenge is to appropriately deal with expectations.

We often dot our path with self-created expectations of what should happen and when and are often disappointed and poorly prepared when things don’t turn out according to our schedule.  I have joked for several years privately, especially since the onset of heart problems, that I gave God a list of expectations---an agenda of sorts---but He seems unwilling to use my agenda for His roadmap of what has happened to me.  He is not allowing my spiritual immaturity to get in the way of grander eternal designs.

Enter the reality of dealing with AL amyloidosis, the unbeatable foe, and the methods currently being used to treat this problem.  Note I use the word treat, not cure.

Chemotherapy and stem cell transplants are the two phrases thrown around when the subject of dealing with my disease/cancer comes up.  Like many, I had expectations of what chemotherapy was going to be like. 

I was going to be hooked up to an IV, where a yellowish substance---a dragon poison of sorts---would flow into my body, which in turn would cause me to violently throw up all night long.   Since I have 15 weeks of chemo before doctors determine whether my body can handle stem cell treatments, the visual of being Rocky Balboa and being battered and wobbling around the ring came to mind.  Fifteen rounds of it. 

All chemos are not the same, not even close.  I was told from the onset mine would be milder and different.  How different I couldn’t have imagined.  I take special drugs in a very timely basis every Friday and then take 15 chemo pills and then go to Huntsman Cancer Institute for a second treatment, an injection in the stomach once a week.

The first week I had lunch at Huntsman as I waited on an injection into the stomach.  The injection is slow and steady, much like the one I had weekly with broken femurs, but really a pretty mild one.  I felt no immediate side effects on going home.

Week two got even better.  I had lunch and then a second helping of pizza as I waited for my injection.  I went home and then found chemo to be much like taking a 20-hour energy drink.  I didn’t go to sleep until 5:30 a.m. on Saturday morning, as my mind and heart raced.

My wife warned that the impact of chemo might be more cumulative than anything.  She was right.  Week three I went through the same routine, minus the lunch at Huntsman, and came home and found my body racing on a “speed” of sorts until 5 a.m. on Saturday.    Then a strange thing happened.  The chemo seemed to kick in and my defense shields went down and the amyloids went to town and seemed to attack the organs and nervous system without any limitations. 

Things got to the point Saturday night and Sunday morning that I had to crawl from bed to the bathroom to try and deal with the nausea, dizziness, chills and heart issues, among others.  It left me battered, but wiser for the experience.  I did throw up a few times, among other reactions.

Because I have now felt a new effect of the dragon poison, I can realistically say the stuff is also working.  That seems the only real important expectation of hope that is really important at this point.  After all, Rocky staggered a lot but was standing when the bell rang to end the bout.

Moving Soldiers to the Front Line

My wife is the consumate medical professional, so her words and advice caught me off guard.

Waiting to receive my first treatment of chemotherapy, she gave me some advice I wasn’t expecting.  This person, who so stresses the need to be exact in following medical procedures and disciplines, suggested I needed to actively employ psychology in initiating the battle, which chemo therapy would initiate against the abnormal protein chains my bone marrow is producing, as result of my AL amyloidosis.

Cindy suggested I visualize soldiers going to the front line in my crusade to battle this crippling disease.  She suggested I be pro-active in my crusade, rather than reactive.

I’ve learned from first hand experiences how important it is to use those visuals to help win the internal battles that go on within the human soul.  They make the difference between joy and sadness and being a victim or one who triumphs.

As I sat in the chair I worked on that visual.  Initially I thought of the soldiers in Babe & Toyland coming to the defense, but that visual seemed like little more than poor fantasy, so I mined deeper.

I found myself quoting the words of “Onward Christian Soliders” and then found more a compelling marching sequence that worked for me.

I am stirred significantly by the story and words behind “Battle Hymn of the Republic.”  This marching song associated with the Civil War was once filled with vulgar words and has been changed to be one of the most stirring songs ever, to suggest that right will always triumph over evil.

I love singing and hearing the base portion of that song that repeats “truth is marching, truth is marching.”

After years of playing the board game RISK, I realize moving my troops to the front line and attacking is better than simply sitting back and waiting for the enemy to strike. 

I could see my soldiers, with guns and bayonets, surging forward to attack and destroy those abnormal protein chains as they try to filter into the organs of my body.  I could feel the pulse of “truth is marching, truth is marching.”

I am ready for the battle!

A Death Sentence or an Opportunity?

The strategy session with doctors at the Huntsman Cancer Institute took on another dimension when the diagnosis of having AL amyloidosis came with another bit of news: a life expectancy.

My cancer specialist had very carefully taken me through the strategy.  We’ll attack the AL amyloidosis implementing a weekly session of chemotherapy for a three-month period, before we will see if my body is ready for stem cell transplants.  I didn’t come into the process with a very clear view of what that meant. Stem cell transplants usually come with a one month stay in the hospital and come with a mortality rate of 10-15 percent.  It is an option to highly consider, he said.

A doctor has to be careful not to raise expectations unnecessarily.  Mine did the best he could.  He pointed out there are options, but the reality is the life expectancy of the average AL amyloidosis patient is 18 months.

Seemed like little he said meant much after that.

My initial reaction was to remember my late friend, Gordon Daley, who was given a one-year timeframe when he became a patient at Huntsman, suffering the effects of Agent Orange.  He lived for 10 years before his body simply gave out.

The second is to realize what that general news really means.  It is an opportunity to seize the day, to put higher value on each day and to get one’s life in order. I see it as an opportunity to live, more than a preparation to die.  I don’t want to be victimized by news, I want to be liberated for however long the time left is.

From experience, I have seen the difference attitude can make in the value of life and the process.  It brought to mind the dignity I thought my mother always lived with and others I have greatly admired.

One of those people is the late LDS leader, Neal A. Maxwell, who died of cancer urging us all the while to endure to the end well.

He put it this way: “At the center of our agency is our freedom to form a healthy attitude towards whatever circumstance we are placed in!  Those, for instance, who stretch themselves in service---though laced with limiting diseases---are often the healthiest among us.  The Spirit can drive the flesh beyond where the body first agrees to go.” (Deposition, pp. 30-31.)

So I chose to seize the day, to seize the moment, to see value in what lies ahead.

Given an eternal perspective, how we live matters a lot more to God and others than how we die, or when we are called home.

Finding Hope in a Hopeless Situation

In battling a disease, for which there is no cure, I find myself facing an ethical dilemma.

What is the value of battling or fighting a battle I will eventually lose?  At what point does it become better to gracefully wave a white flag and to gracefully exit, than to simply rack up debt and encumber my wife and family?

What is the basis of hope?

It’s not a question I have passed over lightly.  It goes to the core of why I want to live and what I hope to accomplish.

I approach this battle with great hope.  The basis of my hope is purely spiritual.  It is not based on a whimsical fantasy.  I believe I can partner with God in this walk/battle.

Mormon theology gives a much detailed version of a pre-existent life as spirits before we were born on earth, than is found in the Bible, and also lists in greater detail what happens when the spirit and body split at the time of death and the place where the spirit goes until the time of the resurrection.

Thus overly frenzied worries about death are not something that occupy a lot of my time.  I do not fear death in the least.

From a professional standpoint I have interviewed people who have had after-death experiences, including my brother, and found great meaning in those descriptions, and even a greater basis for my confidence that the answer that Job raised in the Old Testament  “if a man die, shall he live again?” has a very simple answer: yes.  I will welcome the chance to reunite with my Mom, sister and other loved ones at the appropriate time.

In the meantime, I know it matters in the eternal scheme of things how I handle my challenges.  While my flesh may deteriorate within, I know this situation is only temporary and that there is so much to look forward to.  Life has meaning and how we treat others and make decisions matters.  We matter to God.

Christ is the basis of hope. To understand that is to get to the core of what really matters in life.  It didn’t take cancer for me to grasp that, though it is comforting to know as I battle to make the most of my time here.

Slow It Down and Savor The Experience

The late baseball slugger Ted Williams was well known for his extraordinary focus while at the plate during his Hall of Fame playing days.  The claim was that he was so zoned into the small things that things slowed down for him to the point he could see the seams on a baseball, even if it was being thrown at him at over 90 miles an hour.

The great Ted Williams

During my sports journalism career, I heard the same thing said about great athletes in other sports.  The game in essence slowed down for them, despite its fast pace, so they could decisively make the key cut or move that spelled the difference between a great play and winning and the routine.

During my first extended visit to the Huntsman Cancer Institute in Salt Lake City, the feel of the facility was different right from the beginning.  The waiting rooms are set up differently, in some cases with unfinished jigsaw puzzles on tables outside, for patients who apparently are there for some time, to a phlebotomist being on a first name basis with an older woman, from whom she was drawing blood.

The Huntsman Cancer Institute in Salt Lake City, Utah.

Strangely, it felt to me as if they had taken the clock out of healthcare and tried to establish a different model.  Another young mother with two children talked about talking radiation treatments in an environment she described as a “spa” not a hospital.

The visit seemed to echo the need for me to slow it down as well.  It’s time to deal with what really matters most, not with things of little significance. 

In doing so, perhaps  I can see the small things in life better than I have ever before.  My neighbor Kathy Daley, whose husband was a patient for 10 years at Huntsman, said I am going down a unique road where there will be sacred experiences between God and I, which in essence will sharpen my focus on what matters most.

I have often joked that I have two speeds, fast and extra fast.  As a consequence getting things done in a timely fashion has been extraordinarily important to me professionally and personally.  I suspect I have been so cued in on those things that I have been painful to those around me, especially my wife and children.

Walking now in uncharted territory against a foe I may learn to deal with, but never conquer, it’s time to change and slow things down: to enjoy each sunset, the smell of a simple flower, the smile and joy of a child and the simple wonders of this magnificent mortal experience. It is to see anew that the miracles of God are in the small details.

I suspect there will be pain and difficult moments, but that shouldn’t diminish the ability to enjoy the small things, it should only enhance it. 

Laughing My Way Through a Crisis: The Power of Humor

There is a healing power in humor.  I have experienced it from two different vantage points and hope it will be a key element in my battle to confront amyloidosis.

My son Nathan holding Melissa, Bryan and Sarah

I owe my first big lesson to a pair of blind people in the most difficult of circumstances.

It was October of 1988.  On Oct. 7 in the very early morning my wife had given birth to triplets---two girls and a boy---born six weeks early.  I didn’t realize this miracle would come with such a mixed bag of experiences going forward.

Because they were early, each of the kids took their times growing and getting to the point of coming home.  On a personal level, after taking two weeks off for the birth, I had come back to work as the managing editor of a small Upstate New York daily newspaper only to be let go the day I came back.

But life goes on and while we may not navigate every difficult situation well, we press ahead doing the best we can.  Near the end of the month all of the kids had come home for a day, before more trouble came up.

One of the girls, Sarah, was not breathing well.  I took her to the local emergency room and was blessed---a term I used without embarrassment---that the pediatrician who came to attend her was skilled in her unique case, acted to stabilize her as much as possible, and then began to make plans for her to go to a higher level neonatal intensive care unit (NICU) about 80 miles away in Syracuse.

By the time, she was ready for transport it was probably 10:30 p.m.  In my scramble to accompany my child I too was poorly prepared.  A gracious LDS missionary gave me money for the toll roads and I drove my old station wagon onto the Thruway to find another challenge.  My alternator was dead and my battery died each time I turned on lights or the radio.

Borrowing something I had seen in my days as a missionary in Uruguay South America, I took the whacky tact of driving without lights as much as possible, borrowing light from other cars on the highway to make it to Syracuse and Upstate Medical Center, minutes after my daughter.

Emotionally strung out---as a crisis can cause---I then went to the waiting room of that NICU and waited as doctors worked to address my daughter’s health concerns.  I was blessed in that room to sit next to two blind people.

In engaging with me in conversation they spoke of humor and its importance in dealing with crisis and its medicinal power.  They not only shared the lesson, they began to share stories and to laugh with great enthusiasm at each funny tale.  One I still remember more than two decades later.  On a train to Philadelphia, one told of going back to the bathroom on a train, or at least they assumed the bathroom was there.

The humor lifted the dark cloud and allowed me to smile, feel light hearted for a moment, and to be more energized.  It was a key lesson at a critical time.

Years later, in moving my family from New York to Utah, I found the need to add to that chapter in Iowa, when a man crossed the median in front of the van I was driving and hit me head on.  He died instantly, and by all police accounts I should have too.  However, with miracles from heaven, my badly beaten up body, two broken femurs, two mangled lower legs, every rib broken from a steering wheel that wrapped around my chest, and a punctured lung, among other injuries later, I was cut out of the vehicle by the Jaws of Life and flown by helicopter to a Des Moines Hospital.  Doctors did their best to piece me together.

Fixing the body is one thing, fixing the spirit quite another.  Surrounded by love, faith and some timely humor, I began the slow miracle back one hour, one test and one day at a time.  Legs that would never be able to walk again now walk and function.  My body was pieced back together.

Thanks to more important things, my spirit was revived as well.

I hope I find plenty to cause me to laugh as I now embark on a journey that will require me to slow things down to one test, one day, or one issue at a time.  I am sure there are unpleasant hurdles in front of me.  It is a road I know.  I hope to smile and laugh along the road often.

“You’re Not Crazy After All”

As she read the symptoms and details, the picture and statement seemed to come clearly.I could finally say to myself:

“You’re not crazy after all.”

More than three-and-a-half years into the odyssey of battling heart problems and an odd assortment of issues ranging from dryness, dizziness to bruises that never heal, the pieces seemed to fit into an understandable puzzle.   All those things I have been telling doctors that seemed to go unheeded, for the most part, and sometimes just ignored, now fit into the puzzle.

Biopsy results from a colonoscopy that I had just a day before I began seeing a cardiac surgeon had yielded a surprising result. They found some polyps in their probe into my colon---five to be exact---one large enough to raise some eyebrows and force them under a microscope for further review.

I got an almost frantic call from a doctor saying it appears as though I have an amyloid.  Had never heard the term and the strangeness of the prognosis seemed of relative unimportance to me.  After all, I was preparing or in a waiting game, to deal with much more significant issues----specifically leaky heart valves and the real possibility of significant heart surgery.  I was in a life-changing process, so what’s the big worry about something I’ve never heard of?

In searching for details about an amyloid, Goggle had yielded little that meant anything or translated into something discernible. Yes, it’s rare, very rare, and has something to do with proteins in the bone marrow.  What’s the big deal?

A few days passed.

My case was referred to the Huntsman Cancer Institute, a specialized hospital for cancer research near the University of Utah Hospital, where some rare cancer issues are dealt with.  My late friend Gordon Daley had been a regular there for 10 years, before the effects of Agent Orange had led to the end of his physical life.  My cousin’s son, Derek Maxfield, had also undergone leukemia treatments as a boy and grown up and now is one of the state’s most successful businessmen.  Derek and Gordon inspired me, but their courage was something I could admire from afar.

I have great respect for Jon Huntsman Sr. and his donation to this hospital for those rare cases.  But I would only write about such things as a journalist, never having to worry beyond that.  It is a hospital I would never have to visit as a patient.

After the Huntsman Institute called a second time, my wife Cindy, a very skilled nurse manager who supervises nurses at the Neo-Natal Intensive Care Unit (NICU) at the University of Utah Hospital,
went to the Mayo Clinic online for further details.
The Mayo Clinic’s explanation of amyloid, shed light, and seemed like it profiled things in a way, nothing ever had before.  To use a phrase key to my Mormon faith, it was revelatory.  It was as if the heavens had opened and there was light and understanding. 

Signs and symptoms of amyloidosis may include:

• Swelling of your ankles and legs.  I sometimes have indentations in my legs of two inches after wearing socks.

• Severe fatigue and weakness.  Yes that short walk of 20 yards is hard and I deserve to have a handicap sticker and park close to the door of the store, despite how healthy I may appear.

• Shortness of breath.  I’m really not in that poor a shape.  I used to be able to run miles.

• Numbness, tingling or pain in your hands or feet, especially pain in your wrist (carpal tunnel syndrome).  No that numbness in my feet isn’t due to sitting wrong.

• Diarrhea, possibly with blood, or constipation.  Hardest symptom sometimes to deal with.  Always on guard in public, always.

• Feeling full quickly when eating and significant weight loss.  Those 10-15 pound weight swings in two days do have an explanation and it isn’t because of some miraculous fat burning pill.

• An enlarged tongue.  Nothing quite as awkward as dealing with dry mouth, when it comes on with little warning, when you interview others for a living.  Lifesavers in the pocket to generate saliva are always needed.

• Skin changes, such as thickening or easy bruising, and purplish patches around the eyes.  Some days my skin is drier than the Sahara and all that purple isn’t just because I take a baby aspirin every day.

• An irregular heartbeat.  Easiest symptom to profile.

• Difficulty swallowing.  Now I know why I’ve almost choked on rice twice in the past few weeks and sometimes get three bites into a meal, before I have to stop.

As Cindy read further, about how amyloidosis can impact the heart and then the nervous system, I thought she was reading from my medical chart.

She then read about how the disease can impact the nervous system.  It was the best explanation I could have given to those bothersome questions doctors ask about symptoms and what is going on.

Again the information was a breath of fresh air.
 
Descriptions of how the disease attacks the organs and a wide range of treatment options from chemotherapy to stem cell transplants, still could not take away the comfort of feeling like things fit, like there is a pattern I can deal with and understand.  Even its link to Alzheimer’s in some cases does not change that feeling.

So I begin this walk into the darkness of an unknown disease, and potential ways to treat and deal with it, recognizing there is no known cure, but feeling much better about myself and sure I can deal with lies ahead, with God’s help.

I’m not crazy after all.