Antone Lee Clark July 29,1954 - January 18, 2015 |
Wednesday, January 21, 2015
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.
Friday, January 9, 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!
Tuesday, January 6, 2015
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.
Saturday, December 20, 2014
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!
Tuesday, December 16, 2014
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.
Monday, December 8, 2014
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.
Friday, December 5, 2014
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.
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