On Passing Notes and Other Reflections

Communication is something close to my heart. Even prior to kindergarten, conversing with others was enjoyable. Anyone remember report card “citizenship” grades? At Sierra Madre Elementary School, citizenship grades were a big deal and never slipped through the cracks. My teachers persistently marked my report cards with a “C” or “C-” in citizenship for talking during class when I was supposed to be quiet. All that did was encourage me to go underground by passing notes to classmates!

Trying to suppress a talkative person is, in some ways, like trying to tame the mighty Mississippi River. On one memorable November afternoon in 2011, while Jon and I stood on a bluff in Natchez, Mississippi, overlooking the Mississippi River, we met a keen man in his mid to late 80s. From birth, he had lived in a very big, yellow, wood frame house situated directly behind us on the bluff. He eagerly shared his insights about the River, including recurrent extensive efforts by the United States Army Corps of Engineers to redirect the river at specific bends. Based on his broad knowledge, he was convinced the River outsmarts even the most ingenious engineers . . . deliberately choosing its own path. But the engineers haven’t given up—they keep trying to force the River to comply with their will.

Continue reading “On Passing Notes and Other Reflections”

Oh, the irony of the reality of ALS

As pointed out in previous posts, bloodhounds follow the scent trail that matches the scent on the article used to begin the “hunt.” The bloodhound cannot differentiate whether the scent article originated from a convicted felon, a college professor, a lost child, a swim coach, or Mayor Joe from Big City, USA. Nor does the bloodhound care about the subject’s sex, socioeconomic position, religious affiliation, or ethnic background. The bloodhound’s only goal—find the person who matches the scent. Period.

On an entirely different front, ALS operates on much the same principles. Go after a person with no regard to his or her level of education, annual income, marital status, age, etc.

The grim reality of this hit home again the day before Christmas, when a letter dated December 17, 2019, arrived from UCSF’s Catherine Lomen-Hoerth, MD PhD. You’ll read that Dr. Lomen-Hoerth was mentored by Richard K. Olney, MD, at UCSF. Dr. Olney was diagnosed with and ultimately succumbed to ALS. Additionally, another very devoted, brilliant UCSF researcher—Rahul Desikan, MD PhD, committed to the research of neurological diseases—was also diagnosed with fast-progressing ALS and passed away in July of 2019.

One of my intended purposes for Hound by the Sea is to help increase awareness about a disease that is not well known nor well understood and for which no cure has yet to be discovered. 

Please Note:  The link to Dr. Lomen-Hoerth’s letter is not an indirect appeal for your monetary support for UCSF’s ALS Center. Dr. Lomen-Hoerth happens to be the neurologist who ultimately put a name on my ailment, and her letter is provided here as a means to provide additional insight concerning ALS.

UCSF ALS Center’s Founding Director Dies of the Disease He Studied

Colleagues Mourn Loss of Rahul Desikan, 41, to ALS

Day Twenty-Eight

In my December 10 blog post “Pain is there for a reason,”  I wrote:

We’d appreciate your prayers for complete healing around the stoma and minimal to no side effects from the strong antibiotic.

Early Tuesday morning I took my 28th and final dose of the antibiotic—no major problems! We went for a recheck yesterday afternoon, and the nurse practitioner said the area surrounding the stoma looks good. In the event there are any flare-ups, she put in a standing order for a home health wound care nurse to come take care of it.

After several intermittent days of considerable pain, we appear to be on the road to healing and recovery. Today marks 28 days since the insertion of my MIC-KEY. As one of our daughters said, “It’s been a wild ride . . .”

We appreciate you and your prayers!

Life is in the details!

SNOWFLAKES! Purportedly, no two alike. It takes a Mastermind to first of all devise such intricacies and then . . . own the Supreme intelligence to put the conceptual design in motion.

From Science: How Stuff Works

The next time you’re catching one with your tongue, you might stop to consider the long and arduous plight of the snowflake. Those delicate and intricate crystals have traveled many miles before they plummet to the ground alongside their trillions of cousins. And although they fly in multitudes, the word on the snow-slicked street is that no two of those little flakes are alike. Can every snowflake really be different?

The short answer is yes, snowflakes really are different from one another. You might find some that are exceedingly similar (particularly at the beginning of a flake’s development) but fully formed snowflakes are indeed structurally different, if only by tiniest of degrees.

Is every snowflake actually unique?

Continue reading “Life is in the details!”

Catch the Wind!

LOVE this. Hope you enjoy it, too. ❤️

General Electric is not likely to reimburse me for endorsing their name . . . but they probably should. 😉 Ever since GE’s 2006 release of this TV ad promoting wind energy, I’ve been captivated. Imagine capturing that much wind in a single wide-mouth glass jar! After securing the lid, the young lad traveled purposefully by foot, rail, and motorcycle sidecar all the way back to his great-grandfather’s birthday party—arriving in the nick of time—precious wind still tightly sealed inside his prize jar. Anywhere along his journey, the boy could have met with peril resulting in a loosened lid or shattered jar. The “surprise” gift would have been forever ruined! 

Now backtrack over two thousand years and envision the love, care, and meticulous planning of every detail for the birth of baby Jesus. He was protected and guarded by His heavenly Father as Mary and Joseph searched for a safe place for Mary to give birth to the King of kings and Lord of lords. Herod was out to annihilate Him . . . never happened!

Someone once exclaimed, “None of us are getting out of here alive.” That being said, I can surely trust my heavenly Father today with my life. After all, He arranged for my birth, loves me, has always taken care of me . . . and even now, He has everything under control. Helps take away the worry and fretting. This world is not my home . . . I’m just passing through! 

Pain is there for a reason

 

Merriam-Webster’s online dictionary:

A localized or generalized unpleasant bodily sensation or complex of sensations that causes mild to severe physical discomfort and emotional distress and typically results from bodily disorder (such as injury or disease)

Wordsmyth.net:

Physical distress or discomfort that is usually caused by injury or illness and is the nervous system’s means of signaling to the brain that something is wrong.

Leslie:

Extreme discomfort around the area of the stoma where the G-tube was surgically inserted resulting in severe stabbing sensations and sleepless nights.

My Central Coast Palliative Care RN checked the MIC-KEY yesterday and instructed Jon to take me to French Hospital Emergency Room. My pain level was right around where the needle points on the image above. After making a phone call, the RN learned that the interventional radiologist who surgically inserted my G-tube on November 21 would be on call at French Hospital all day yesterday. We arrived at noon. It was determined a CT scan with contrast was needed. Because there’s only one CT machine at French Hospital, I had to wait my turn—as in 3.75 hours! My interventional radiologist saw nothing on the CT scan that would contribute to my severe discomfort. However, she noted the redness, swelling, and acute sensitivity around the stoma area may be indicative of cellulitis. I was sent home at 6:00 p.m. with an antibiotic prescription for seven days, 4X times daily. So grateful for our Rexall  pharmacist putting that prescription in suspension for me this morning so I can take it orally without issue—pills are increasingly a choking hazard.

We are quite tired today but very thankful to be in the comfort of our own home. We’d appreciate your prayers for complete healing around the stoma and minimal to no side effects from the strong antibiotic.

 

Everything you never wanted to know . . .

It occurred to me that most of you are—like I once was—totally unaware of the myriad of processes involved in “simply” swallowing. Around this time in 2018, a registered dietitian at Forbes Norris ALS Clinic in San Francisco shared an informative two-page printout titled “Swallowing Tips” (attached below for you).

Things have progressed since the dietician put x’s in some of the boxes. For example:

“Drink with a straw. This keeps your chin tucked and helps you control how much liquid you are taking in each sip.”

Drinking with a straw is no longer an option for me. The muscles controlling my lips have weakened, and I am not able to achieve the necessary suction to suck from a straw. Sad reality . . . I can no longer smooch Jon nor kiss our dogs. 😙

As referenced in my November 14 “Counting our many blessings . . .” post:

Something as seemingly insignificant as [chewing and swallowing] shouldn’t be taken for granted. 

Life is fleeting . . .

Occasionally while driving, I have been faced with the need to abruptly apply the breaks to prevent a calamity. More often, I have time to come to a complete stop in a slower, more controlled manner. For reasons unknown to me, God is affording me time to plan and prepare for my exit from this world with a heart full of gratitude to Him for so many blessings.

We’ve had friends with no previously identified health issues who were suddenly taken without warning. I’m thinking of three individuals—two were women—one had two young children, the other had two young adult daughters. The third was a hard-working, loving husband and doting father of four daughters—one still an infant. In each case, these wonderful people were snatched away in their prime. Friends and family were in total shock and disbelief.

A wonderfully astute and affirming friend who once taught my Gregg Shorthand class at Pasadena High School was soon approaching her hundredth year. During a memorable phone conversation about five years ago, she remarked, “Leslie, all of my contemporaries are gone.” Her statement caused me pause . . . I still have friends who care. What would it be like if all my friends were gone? It brought me face to face with how quickly time passes.

Even though I realize life is fragile and brief, it never occurred to me that mine could be cut short due to a progressive, degenerative disease. At times it seems as though I’m peering down on my life from above . . . like it’s not really me who has been diagnosed with a serious illness. The only word that fits is . . . surreal. 

These verses from the New Testament book of James have helped guide my life. Perhaps they will speak to you, too.

James 4:13-16  (Living Bible)
Look here, you people who say, “Today or tomorrow we are going to such and such a town, stay there a year, and open up a profitable business.” How do you know what is going to happen tomorrow? For the length of your lives is as uncertain as the morning fog—now you see it; soon it is gone. What you ought to say is, “If the Lord wants us to, we shall live and do this or that.” Otherwise you will be bragging about your own plans, and such self-confidence never pleases God.

Reportedly once seen on a graveyard headstone . . .

“I told you I was sick!”