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.

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

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.