Celebrating America's 250th and Dad's Improved Quality of Life

Howdy from hot, humid East Texas, where you feel as sticky as a Hot Shot No Pest Strip!  But I am grateful that we did not suffer from flooding like so many folks in other Texas counties.

It has been quite a while since I blogged, so I thought I would give you an update on Dad's cancer journey.  He just finished his third cycle of Padcev/Keytruda chemo/immuno- therapies.  Thankfully, he has not experienced any negative side effects.  On the contrary, some encouraging things have resulted!  Dad’s heart is back in normal rhythm after being in constant a-fib for 2+ years!  The pain in his abdominal/pelvic areas has lessened considerably.  So, pain is manageable with only his holistic remedies (wild lettuce tea, frankincense, and myrrh) and a rare Tylenol, all of which have been approved by his oncologist.

                                        

 

With pain reduced and managed better, Dad’s appetite has returned, so his weight has stabilized.  He has a lot more energy and has increased his activity level substantially.  He is sleeping better, which means Mom is too, though she still looks exhausted.  But that is attributable to the frustration and stress of dealing with providers whose staff are unfamiliar with/misunderstand the nuances of our faith-based health-sharing plan.  Combine that with the use of third-party billing companies, the required use of portals to communicate with providers, and language barriers that hinder proper communication when you finally reach a live agent, and you’ve got Mom spending hours on the phone while pulling out her hair—and her New Jersey attitude.

 

It is disgusting that the Hippocratic oath has been replaced with the hypocritic oath and that providing healthcare is no longer a vocation but only a job.  Many moons ago, healthcare was a non-profit business, operated predominantly by religious organizations.  Now it is a multi-billion-dollar industry, with the health of a patient secondary to making money.  We had a bad experience in 2017,

 (https://ramblingrvrat.blogspot.com/2017/11/)

but this one topped it.  We handed in our faith-based health plan card when Dad had his Emergency Room (ER) visit in Lake Havasu Regional Medical Center in AZ.  It was not until minutes before Dad was discharged in the wee hours of a Friday morning that we were informed that our health plan would not be accepted as payment, and we would need to pay out of pocket.  We were presented with an “estimate of charges”—which was over $20,000.  Oh, but out of the goodness of their hearts, they would cut that bill in half because we would be self-paying.  We had 7 calendar days (NOT business days, mind you) to pay it in full to qualify for another small discount.  If we opted to put it through our health plan and make the provider wait for payment, all discounts would be off the table, and we would be balance-billed for anything our plan did not cover.  So, feeling pressured with a damned-if-you-do, damned-if-you-don't scenario, Mom made the decision to pay the discounted cost personally and send the expense to our health-sharing plan for reimbursement.  In the long run, it turned out to be the most cost effective, even though out of the nearly $10,000 that we paid, our faith-based health plan deemed only $3,800 to be “reasonable and customary”.  We hold nothing against them for their determination.  It was obscene what the ER charged, even at the discounted rate.  Mom learned later that the hospital is owned by the providers who work there.  Yet, these same providers are NOT employees but instead contract workers provided through a third-party employer.  Guess that is their way of alleviating any conflict of interest.         

  

In between dealing with medical-related issues for Dad, Mom is in training. She is learning tasks that Dad would handle normally like monthly maintenance of our water softener, semi-annual water filter changes, and pumping fuel in my Rambling RV Rat Pack Rubicon.  I know the latter sounds trite.  However, Mom lived in New Jersey for 3/4 of her life, where it is UNLAWFUL to pump your own fuel!  Crazy, ain’t it!  One thing Mom realized she could not take on was filling the 40-pound propane tanks.  She is “strong like bull” and could probably get the tanks in and out of the Jeep.  But there was no way she would be able to lift a filled tank into the RV drawer. And while a local propane company will come into the RV Park for tank fills, they do not do so for small tanks.  So, she spent $2,000 purchasing and filling a 120-gallon tank delivered right to our site.  That’s enough propane for a couple of years, so we are all set! 

 

 

It is so encouraging to see Dad more like his normal self.  We won't know definitively how effective treatments really have been until his next scans in early September.  But we are grateful in the meantime for his improved quality of life, and we are taking part in more of our regular activities like line dancing and pickleball in Cold Spring, TX, though significantly less often (and with less intensity) than we once did.  We have continued our weekly commitment volunteering at the Mannafest Food Pantry.  Dad has been attending his Masonic Lodge meetings consistently and is getting more involved, now serving as “Tiler”.  Though Mom supports Dad in all his efforts, she is not a fan of fraternal organizations.  So, she refuses to join the Eastern Star (his Masonic Lodge’s all-female auxiliary).  Instead, she helps the FAITH Military Support Group with assembling monthly care packages for members of the armed forces stationed throughout the world.    

 

Dad's installation ceremony for new Masonic Lodge officers.

Mom on the assembly line for military care packages.

We have been participating in more activities within our RV Park, too, including potlucks and the golf cart parade to celebrate our country’s 250^th Independence Day.

Luau-themed potluck at the Park Clubhouse...

...was enjoyed by all.

Dad got out his jumbo flag for the USA 250th!

Speaking of July 4th, we enjoyed viewing the newly-released movie, Young Washington.   The theater was packed, with us snagging 3 of the last 6 seats, albeit in the cranked neck section (first row).  We also participated in the holiday festivities at Livingston’s Pedigo Park, which included music, vendors, bounce houses and other kiddie activities.  Mom and Dad helped at the FAITH Military Support Group table, which accepted donations for the hot diggity dogs they served.  That evening we visited Lake Life Brewery which featured musical entertainment by a talented young local artist, Anthony Walls, and some great fireworks along the waterfront.  We are thankful that the holiday was safe and enjoyable for us.  Hope it was for you, too.  And I pray that we can all put aside political differences to realize that despite our country’s flaws, we are blessed to live in the United States of America.

 

What fun I had on this slide!

We have taken some fun day trips when Dad is not scheduled for any cancer treatments/doctor appointments, which I will tell you about in my next blog.

 

Lastly, I would be remiss if I didn’t take a moment to express my gratitude and that of my parents to all of you who reached out, whether through a FB or blog post, phone call, or text, to offer words of encouragement, to lift up prayers, or to send a virtual hug.  We truly appreciate your kindness and moral support.

 

The Start of a Different Journey Along a Road That NO ONE Wants to Travel

It has been quite a while since I last blogged.  Usually, it is because we are having too much fun on our RV adventures to stop and take the time to write about them.  Sadly, this is not the case now.  In the blink of an eye, our lives have changed dramatically.  Our wheels are not rolling, all our campground reservations have been canceled, and our travel plans have been put on hold indefinitely.  Instead, we are on a different kind of journey, a road upon which no one ever wants to travel.

 

It started back in March, when we went to enjoy a relaxing day at Lake Havasu, AZ.  Instead, we ended up in the Emergency Room at Havasu Regional Medical Center with Dad suffering excruciating pain on the left side of his back and abdomen.   We thought perhaps he had kidney stones.  But the CT scan indicated much grimmer news, and the ER doctor urged us to return home to TX immediately to seek medical attention.

 

We called the very next day to schedule a consult with a highly recommended urologist in Kingwood, TX and were grateful to get an appointment within 3.5 weeks (originally we were scheduled 6 weeks out!).  But upon examination and review of the ER CT scan, this urologist deemed Dad’s condition was too severe and outside the scope of his services.  He referred us to Baylor College of Medicine (BCM) in Houston and Dr. Seth Lerner, BCM’s top urologist, stating that with 30+ years of experience practicing medicine, Dr. Lerner “wrote the textbook” on Dad’s condition.

 

Surprisingly, we got an appointment just 2 days later for a consult with Dr. Lerner.  After a PET scan, Dad was scheduled for a cystoscopy and transurethral resection which were performed on an outpatient basis.  Dad lost quite a bit of blood, so he was admitted to Baylor/CHI/St. Luke’s for observation.  He was sent home with a Foley catheter/bag for Mom to administer maintenance/care before it was removed a week later.

 

The scan/procedures provided confirmation of Dad’s diagnosis: Stage 3b, muscle invasive bladder cancer, with several metastasized lymph nodes.  

 

I feel like I got sucker- and gut- punched at the same time.  It is surreal to hear the word “cancer” to describe Dad’s condition. Cancer does not run in my human paternal OR maternal families.  And, ironically, Dad has never been a smoker nor ever had excessive exposure to chemicals, the two groups who are considered high-risk for bladder cancer.

 

We met earlier this week with the BCM oncology team.  They spent over an hour imparting information and answering our many questions.  There was no sugar-coating Dad’s condition.  They cannot cure his cancer, but they will pursue controlling it aggressively.  He will begin 4 cycles of combination enfortumab-vedotin chemotherapy/Keytruda immunotherapy, a muscle-invasive bladder cancer protocol approved by the FDA in November 2025 which has produced encouraging outcomes.   Thereafter, his bladder must be removed, and a neo bladder from a section of his small intestine must be created.  Unlike many medical doctors, the oncology team is not opposed to Dad partaking of some natural/holistic remedies which our wonderful friends, Stephanie and Curtis, have been instrumental in sharing.  For instance, he has been applying frankincense and myrrh to his abdomen area to assist with inflammation and to possibly kill cancer cells.  We have added many antioxidant/health-benefitting foods to his diet.  And he is drinking tea brewed from wild lettuce for pain management with no interference with his heart medications.

 

It has been so difficult to see Dad, who conquers all tasks with vigor and gusto, exhibit such a lack of energy and be in such discomfort/pain.  Furthermore, it breaks my heart to watch the emotional toll this has taken on my parents.    Dad may be the stronger one physically, but we always have relied on Mom to be our emotional pillar.  My beloved human Grandma always called Mom the family’s “Rock of Gibraltar”.  But I notice that the “Rock” now has many visible fissures and cracks.  She returns from her walks with a tear-streaked face.

 

If only I could wave a wand to repair our crushed spirits, piece together our shattered dreams, and cure Dad of his cancer, which comes with a 5-year survival rate of just 35%.   But I know only God has the power to relieve us of our burdens.  I know that every day my family is together is a gift from God, for none of us is guaranteed a “tomorrow”.  I do believe in miracles, and I know God answers prayers.   I just hope he hears the small voice of Rambling RV Rat through the roar of all the other people in this world who need his mercy and grace.

 

Though no easy feat when you feel like a guillotine is hovering overhead, Mom strived to return normalcy to our lives, particularly when we were awaiting physician consultations.

   

We had a somber trip home from AZ to TX. 

For Easter, we attended a beautifully-performed Easter Cantata, and we assisted in the delivery of plants to area shut-ins and seniors.  It was a heartwarming experience.  And I realized that sometimes the simplest gifts are the ones that bring the most happiness to folks.

The Easter Cantata at First Methodist Church.

Plant Delivery Volunteers.

We enjoyed Mom's lasagna Easter Dinner (Dad still had an appetite then).  And, we celebrated my birthday--or more accurately the anniversary of my rescue from the toy store so many years ago, which you can read about here:  https://www.blogger.com/blog/post/edit/741635452 7052845038/7395047688811937612

Having to forfeit pickleball and line dancing for less physical activities, we went to a couple of movies over these last few months and attended a Spring bell choir concert.

Known as the  "Ding-A-Lings", this is one talented group of bell ringers!

Despite Dad’s physical limitations/reduced capacities (he cannot lift more than 10 pounds for 6 weeks after his urethral transection, during which stents had to be implanted because the tumor is blocking the kidney-bladder connectors), we returned to volunteering at Mannafest Food Pantry, albeit for shorter shifts and more passive tasks.

 

For Memorial Day Weekend, we attended a ceremony in Lufkin, TX, we participated in placing flags on the graves of local heroes who made the ultimate sacrifice for their Nation, and we stood for a local Korean War hero finally brought “home”.  The rain didn’t stop us from arriving at 7 a.m. on opening day for picking at C&M Blueberry Farm in Livingston.

Ceremony at Gibson Funeral Home in Lufkin, TX.

 

As members of the Southeast TX Patriot Guard Riders, we participated in placing flags on graves of local heroes...

...visited with the Gold Star family of KIA PFC Stuart Moore... 

...and stood for the "Coming Home" Procession of Korean War MIA CPL Orestus Stewart.

 Great family farm and delicious berries at C&M! 

 

To commemorate a milestone wedding anniversary for my parents, we visited Livingston Lake State Park.  It was a far cry from the celebration they anticipated.  But it was reminiscent of one of their first dates.

Enjoying nature, even if it is only in our hometown instead of in a National Park, provides us all with some solace, serenity, and spirituality.

 

One thing I learned from this entire ordeal is that full-time RVing makes a medical emergency so much more difficult.  So, we are grateful that Mom always planned for “what ifs”.  Hence, we have this long-term leased lot on which to stay here in Livingston.

We are blessed with the prayers of family and friends, and we value the camaraderie of our fellow members of the Escapees RV Club.

 

March Madness – It Ain’t Just About Basketball Here in Quartzsite, Arizona

March weather is known to “come in like a lion”.  Nay, nay I say!  This year in Quartzsite, the temperature on March 1 was 94F degrees!  But we were going to another “Howling at the Moon” festival in Yuma come hell or high water (and with the 97F temps in Yuma, we were getting close to the dry heat of hell!).  As we drove South on AZ-95 to Yuma, we noticed an exodus of RVs heading north seeking cooler temperatures.

 

The heat wave continued the next day for our Quartzsite line dancing extravaganza known as March Madness, where line dancers from neighboring areas join our Quartzsite group for an entire day of dance and fellowship.  It was the 22^nd Annual and the final one at which our long-time Instructor Vee would be at the helm.  We are grateful for her years of devotion, for the laughter, and for instilling that the only important thing about line dancing is “to have fun!”.  Though Vee is departing, line dancing will continue in Quartzsite with our new instructors Julie, Cheryl, and Diane.  So grateful they have stepped up to the plate to fill the void.  We also are fortunate to have Jody and Ken, wonderful instructors at the Desert Gold RV Park in Brenda, who always welcome us at their classes.

The Quartzsite Line Dancers.

Ken, Jody and the Brenda Line Dancers always welcome us when we pop in for an extra lesson.

All our dance instructors!

My favorite...

...March Madness participants!

Catherine presented departing Instructor Vee with a gorgeous handmade quilt consisting of all our annual Mad Madness t-shirt designs.  Truly a labor of love!

Not only did we experience high temperatures, but we had many days with ferocious winds during March.  I’ve got dust stuck in places you wouldn’t think possible!

 

Fortunately, we had only a light, cool breeze to accompany the hot weather on the day my family held my Rambling RV Rat Desert Party.  Pretty much every year we have been in Quartzsite (this was our 11^th) we have hosted a get-together.  This year included 28 dance friends, pickleball buddies, and desert neighbors.  Mom cooked up several entrees, (sausage/peppers, nacho skillet, chicken/rice) along with several salads (couscous, pasta, broccoli), and baked up a storm with foods that could accommodate most people’s dietary needs.  She may not be the best chef, but I am happy to report she maintained her record of never poisoning anybody!

 

The aerial view of the gang!

The aftermath of the party.  This is Round 3 of dishes that Mom had to wash!

After our desert party, many of us attended the final Skyhawk Dance at the Senior Center.

We used my self-portrait as directional signage for reaching our desert abode.

Speaking of signage, over the last 6 years I created 6 rock art self portraits along Old Yuma Road, representing 1 for each year of being in Tyson Wash LTVA.  Happily, they have remained intact!  Let me know if you locate them! 

We had some wonderful aerial views during March: double rainbows, the after-effects of a SpaceX launch, and writers in the sky.  And I just love witnessing the beautiful Arizona sunrises and sunsets, the masterful work of our Creator.

First the rainstorm.

Then the gorgeous double rainbow!

 

The sky after a SpaceX launch.

"Q" with an arrow pointing toward town, created by a skywriter.

Sunrise...

...Sunset, swiftly fly by the days.

Dad was busy with several projects this month.  He installed a new convention oven/microwave (our original one was not keeping temperature).  He re-sanded and re-stained the interior steps up to the bedroom (Klutzy Mom dropped cans too many times on the old steps, creating knicks/craters).  Dad also installed new running boards on my Rambling RV Rat Pack Rubicon, which also received a new windshield to replace the one damaged from a rock that kicked up while ON-road.   We had Shade Pro install some new slide toppers on Suite Retreat, too.

 

Getting packages from Amazon this year was more challenging than in prior years.  With Amazon, you have no idea what shipper will be used.  There is no option to select a shipping preference.     Moon Mountain Mail here in Quartzsite can accept packages shipped via FedEx and UPS for non-mail service folks for a fee of $5/package.  But they no longer can receive anything shipped via USPS unless you have a “mailbox” at their facility.    Fortunately, friend Marlys was a Godsend and allowed us to ship to her Moon Mountain address.

We have derived immense enjoyment from watching the activity at our bird feeders!  Sparrows, mourning doves, and Gambel Quail all have come to the 24-hour buffet.  Even a couple of ground squirrels have been regular patrons at the feeders.  They climb the pole, hop on board the feeders, and kick seeds out to the ground.  They are so very thoughtful and accommodating to the desert mice who come out at night to partake, too.  The whole gang loves when it is windy--we take the feeders off the pole and place them on the ground to protect them from being damaged.

We heard the howl of coyotes a few times here in Tyson Wash LTVA, but not nearly as often as we did our first 5 years when we set up at LaPosa South LTVA.    Similarly, in Tyson Wash LTVA we see few Gila woodpeckers (though we do hear them call out as they fly by), and jackrabbit visits are not as common as they were in LaPosa South LTVA (though I have uncovered plenty of evidence of their existence here in Tyson Wash LTVA!)

 

Some bunnies have been busy, busy, busy!

I always keep my eyes peeled for wildlife surprises.  And I spotted this nest below a nearby bush!

We did some motorcycle riding to the California side of the Colorado River for our annual Burro Palooza viewing.  (The burros were quite friendly--maybe they remembered me from other years!  I am sure they don’t see stuffed rats too often!)  Then, we drove over Parker Dam and continued up Highway-95 to take in the views of Lake Havasu.     

Skull Rock.

We also went for our annual visit to Celia’s Rainbow Garden, a tribute to the daughter of Joanne and the late Paul Winer (known as the “Naked Bookseller”).  Celia succumbed at age 8 to a viral infection that attacked her heart.  I just love seeing the desert flora come alive!

Unbeknownst to us beforehand, a Heroes Day Ceremony was ongoing at the Garden.  Sadly, this was another poorly attended local event due to a lack of publicity (like the Valentine’s Day Dance we attended in February).  We walked over to participate, rounding out the attendees to a dozen.   But not one of us were first responders for whom the event was honoring.   It amazes me how we have so many digital options for promoting events (not to mention the old-school way of posting flyers), and yet communication still lacks.

 

Each year Quartzsite empties out earlier and earlier.  But nothing clears out the LTVAs as quickly as nearly a week’s worth of projected temperatures of 95-110F degrees.  As for me, I am just going to lighten up and head on over to the clothing-optional “Magic Circle” in LaPosa South.  

Speaking of Paul Winer earlier, I found this photo from 2016!   Mom photographed Dad and me with him outside his bookstore.   You can see quite clearly why he was called "The Naked Bookseller".  

"N" is for Nudists, and this Rambling RV Rat has just joined their ranks.

 Talk to you again soon!