Two years ago an oncologist told me I had stage 4 melanoma and it appeared our traveling days, and indeed life as I know it, was at an end.
“And now I get to deliver the bad news,” said Kendra, the nurse practitioner as she led me back to the treatment center where I would spend an hour every three weeks getting a dose of immune therapy to rev up my immune system to attack cancer cells. “There’s no cure. You’ll have treatment for the rest of your life.”
Well, maybe not.
The full body scans I get every three months have shown near constant improvement. I don’t have new spots, some spots are gone and others have shrunk. The most I’d hoped for was to be able to stretch out my treatments to every six weeks.
On Thursday, Dr. Hashem Younes, always a chipper guy even when I’m sobbing in self pity in his office, said my last scan results were “awesome.”
He wants to see another scan and then, maybe, I can go off Keytruda. Sometimes the revved up immune system keeps working, he said.
That means no more scheduling life around treatments every three weeks.
There’s something oddly missing in the area where tornadoes six months apart in 2019 and 2020 touched down damaging hundreds of homes in Mississippi.
There are no FEMA trailers. You know those ubiquitous small gray trailers that pop up after natural disasters.
The Federal Emergency Management Agency opted not to provide trailers for people whose homes were damaged by the storms, Robby Lawson, the construction manager for Restore Jones County explained to us one day during a break from painting walls at The Glory House in Laurel, Mississippi.
Due to Covid, FEMA opted to have drones flyover homes to determine tornado damage. That means no FEMA inspector ever entered the houses to see the inside damage, like waterlogged walls, thus the cost of those repairs didn’t figure in FEMA’s calculations, he said.
The overall damage to the homes here didn’t meet FEMA’s cost threshold for providing trailers, Robby told us.
So instead, a year after the last big storm, we saw some families living in small camping trailers parked on land still strewn with storm debris.
We volunteer for NOMADS, a Methodist group. The official name is Nomads on a Mission Active in Divine Service. The joke is the acronym really means Nice Old Methodists Avoiding Deep Snow.
NOMADS travel from project to project in their RVs, spending one to three weeks, repairing homes after disasters or fixing up churches or camps.
Right now our RV is parked in the parking lot of the former Mississippi Baptist Bible Institute in Laurel, Jones County, Mississippi. We’re repairing homes damaged by the tornadoes.
As always here’s a deeper story here than me and Joe painting a few walls and ceilings.
This is rural Mississippi, the Pine Belt. At one point Midwestern lumber barons discovered the piney woods here. They moved to Laurel, building big houses.
Laurel was the yellow pine lumber capitol of the United States, but that was around a century ago. Now there is a big chicken processing company, a few other manufacturers and little else.
Jones county is home to about 68,000 people. Some 20 percent of them live below the poverty line and the median family income is $34,000. The median household income for the rest of the U.S. is $68,000.
The biggest attractions here are Erin and Ben Napier, the hosts of Home Town. The HGTV show follows Ben and Erin as they rehab historic homes, cute cottages and bungalows in this small Southern town.
The tourists Home Town attracts drive slowly through Laurel’s historic area looking at the houses. The women buy candles or Erin’s signature headbands at her Laurel Mercantile Shop. Men slip over to the Scotsman General Store and Woodshop to pay $53 for an heirloom hammer like the one Ben uses.
The tourists line up to eat at Pearl’s and the Bird Dog Café and then stand at the end of the couple’s driveway to catch a glimpse of Home Town celebrity.
Few of tourists pass by The Glory House, the 104 year-old house that served as a pilot to interest HGTV in Ben and Erin’s show. The Glory house was founded by Hope and Grant Staples.
The house is the headquarters for the Staples’ ministry of serving the community that includes a food bank, a Sunday worship service, children’s camps and community meals that regularly serve 400 neighbors in the park across the street from the house.
When the tornadoes struck, the team at Glory House swung into action. They set up six disaster centers over three counties coordinating with churches to offer meals, clothing, furniture, food and cleaning supplies to those who needed it.
In those first days Glory House served 26,000 meals to disaster victims, volunteers clearing debris and workers repairing the electrical lines. Hope and Grant coordinated with churches and restaurants every night to deliver hot meals to victims scattered among local hotels.
Then Jones County asked the Staples to step out to meet an even greater need. Could they coordinate the long-term rebuilding and repair of damaged homes here?
The couple prayed about it for a week before agreeing to create Restore Jones County. That’s the group Joe and I are working for.
Many homeowners had little or no insurance when the storms hit in 2019 and 2020. FEMA and the Mississippi Emergency Management Agency haven’t offered homeowners much cash either, Robby explained.
So there’s little money or manpower to rebuild damaged homes.
Restore is meant to fill that gap.
NOMADS and the Mennonite Disaster Service are providing teams of free labor to repair or rebuild homes from the ground up. Restore uses donations to buy materials.
The materials aren’t cheap.
There’s the price hikes you pay whenever there’s a natural disaster. The cost of hiring roofers has skyrocketed, for example.
There’s a shingles shortage. The cost of lumber has tripled. You can’t get a variety of plastic electrical boxes. (We don’t know if that last one is disaster, Covid or Chinese tariff related.)
In the last 10 months Restore has raised $200,000 to pay for materials. That falls far short of what’s needed.
Hope estimates Restore needs $500,000 to build just six houses from the ground up. That doesn’t include the money needed to replace water damaged ceilings and floors, for example, in the homes that are still standing.
So while people from California are buying up cute homes in Laurel with the hope of being on Ben and Erin’s show and tourists pour into the block-square downtown to buy antiques, there are people in Jones County living in camping trailers parked on property strewn with tornado debris.
I don’t have it. Joe doesn’t have it. No one we know has it.
The little virus causing so much havoc around the world has changed the way I deal with people and the things they touch.
Two weeks ago for the first time I grabbed an antiseptic wipe to wipe off the handle of the grocery cart in the Giant Eagle. I’d always thought people who did that were paranoid or silly. I’ve become one of them.
There were no large bottles of hand sanitizer on the grocery shelves. I bought a half dozen of the little ones you attach to your purse or backpack.
I read a lot of what I call apocalyptic literature where a virus, zombies or political upheaval turns the world upside down and puts us back in the stone age. I know how to prepare for the end of the world as we know it.
Two weeks ago I snuck in extra canned tuna into the grocery cart and told Joe we needed more canned veggies sneaking in those as well. I’m actually stocking up in case we get quarantined.
The following shopping trip Joe admitted that he’d been thinking the same way. We bought more canned veggies, a large bag of rice, noodles and extra spaghetti sauce. I haven’t added extra toilet paper to the list, but I have stocked up on cough syrup, Tylenol and tissues. We’ve made sure we have enough of our medications to last a month.
I stretch my long sleeves to cover my hands when I open doors in public bathrooms. I flush toilets by using my foot to karate kick the button or push the lever. (Don’t laugh, some of you do the same!)
I sing “This Land is Your Land” in my head when I wash my hands for 20 seconds.
This week we started bumping elbows with friends we meet at church.
Then there are the things I’m noticing about others such as how close we stand next to each other and strangers.
Grabbing a chai at Starbucks on the Ohio Turnpike I stood at least 6 feet away from the group ahead of me in line. I watched the barista push her hair off her forehead, scratch her nose and pour the tea into a cup before she handed it to me. The chai wasn’t contaminated, but I wondered what bugs her hands had left on the paper cup.
I’d never thought of that before.
When we arrived at a friend’s home for Sunday dinner, he went in for a big hug. I backed away and offered an elbow. He made a joke about it, then hugged me anyway. I stiffened.
Since Charley’s immune system is already compromised we’re trying to avoid her getting sick, Joe explained.
We’ll we’re not staying 6 feet away from each other, he replied with a laugh. I had already taken a couple of steps back bumping into the couch.
We’re not changing our other routines. I have a movie matinee date with a friend later this week. We’re still volunteering to serve community meals. We have tickets for the Empty Bowls fundraiser for the foodbank next Sunday.
We leave for Florida in our motorhome after my next treatment later this month to visit with friends and family, and do some disaster rebuilding with Nomads there.
I’m not paranoid about a virus, maybe a bit silly.
So, if you’re not my family, don’t expect a big hug when I see you. You’ll get a hearty elbow bump instead.
I look down at my freckled legs propped on the dashboard of our motorhome as Joe drives north from North Carolina where we’ve left our mission project early.
Which one of your betrayed me, I think. Who’s the little bugger that turned off his blockers to set cells free to grow anyway they want, also known as cancer.
I can hear them in my mind. The set free cells are giggling in high-pitched voices like the blue Cornish pixies in a Harry Potter movie.
In August while working on a project in Indiana, I felt a hard lump in my groin. It didn’t go away and I set up an appointment with my general doc in Pittsburgh. He set me up for an x-ray, CT scan, blood work and recommended I see a surgeon to get a biopsy.
I had a biopsy before we left for our next project in North Carolina. A week later, I got the results. Metastatic melanoma likely stage 3 or 4.
Some freckle or mole went rogue and its whacky cancer cells are now in three of my lymph nodes. And here we are back on the road again to Pittsburgh seeking doctors who can offer treatment.
We’re going to find that rogue freckle or mole and kill it and its little cell friends too.
Resistance to Donald Trump’s whacked out policies comes in all forms, including scarves.
It’s evident at the Fort Necessity National Battlefield in Farmington, Pa. The park commemorates the skirmishes that sparked the French and Indian War, which then ignited a world war.
As we entered the small visitor center, I noticed the National Park volunteer behind the counter was knitting a beautiful multi-colored scarf.
I’m a knitter. Knitting is a universal language. I’ve met knitters in Mexico, and even though I don’t speak Spanish, we exchanged knitting techniques.
Forget the historic battlefield. I immediately wanted to know what the volunteer was knitting, what kind of yarn she was using and what stitch.
I’m knitting a scarf with colors representing climate change, the volunteer explained. Volunteers across the country are knitting the scarves as part of a tapestry project to show visitors how climate change affects the national parks. The different colored yarns represent daily temperature for a year. Blue yarn represents cooler temperatures. Yellows, reds and oranges represent warmer days.
One scarf represents the year the park was founded and the other will be the current year, she explained. They’ll be displayed together so that people can easily see how the park’s climate has changed, she said.
That’s cool. A small act of resistance.
The resistance to the Trump, though, goes further.
Later Joe went back to buy a postcard at the small park gift shop. He got to talking to the volunteer again.
National Park rangers have long kept track of the weather statistics for their parks, she explained. The collected information was uploaded to the National Oceanic and Atmospheric Association’s databases, adding to the agency’s knowledge about the nation’s weather and climate.
Two weeks after Donald Trump took office rangers were ordered to stop tracking the climate, she said. They were told it wasn’t their job to collect information on the climate.
That’s when the volunteers stepped up. They now keep daily records. When the Climate Denier in Chief leaves office, the information will be dumped back into NOAA’s databases, she said.
Viva La Resistance! Whether it takes the form of a scarf or recording data for future generations.
Life off the grid isn’t all it’s cracked up to be.
We haven’t had
internet or cell phone service for much of the summer.
That means no chit chats on the phone with the grandkids. No checking the latest news on the internet. No tweets, no messages, no Sirius radio, no television. Off the grid.
It amazes me the
number of places where you can’t get a cell bar.
We didn’t have service in national forest in Michigan’s Upper Peninsula for a week, but I expected that. We’d drive for 20 minutes before seeing another car. Locals told us that AT&T had towers there. We have Verizon phones.
The lack of service
was the running joke at Camp Rivervale in Mitchell, Indiana, where we replaced
lights, painted and did other odd jobs on cabins as part of a three-week NOMADS project.
There are a lot of
tall trees on Rivervale’s property, which is surrounded by cornfields. The camp
caretakers told us that we couldn’t get service because the cell signals
couldn’t get through the trees. Huh?
I have another
Mitchell is a dead town. It’s claim to fame is that it was the home of Virgil “Gus” Grissom, a Gemini astronaut and the Carpenter school bus factory. The factory struggled for years before closing in 2001.
street has one café, three thrift stores and a lot of empty store fronts. It
appears residents are selling their junk to each other.
In other words,
there’s no reason for Verizon to invest in cell phone towers in the area. Who
would use them?
We found that you
might get a bar or two on the phone if you got up before 5 a.m. The service
died by 7 when everyone else got up and began making phone calls and getting on
From then on phones
dropped calls in mid-sentence and text messages telling us to break for lunch
arrived hours late. Forget email or trying to get a weather forecast.
I had no idea what
was going on in the world, which is a horror for a news junky.
So when my daughter
Colleen called one afternoon for her weekly chat I asked what was happening in
wants to buy Greenland.”
See what you miss
when you don’t have cell phone service.
Nikki spent her last
day doing the things she loved.
She rolled around on
her back on the grass in the sun. She chased balls, chewed on a stick, tried to
make a break for it and dug a hole in the soft dirt in North Adams, Mass.,where
we are parked for a volunteer project. She sat patiently for biscuits after her
walks and begged for pretzels after dinner.
Nikki was 12, or 13, or 14, no one is really sure of her age. She was old for a dog, but her death came suddenly. She died Monday morning with her pack around her on a frantic drive to an emergency vet clinic an hour away.
She joined our pack at 9 months old, when Joe fell in love with the all black dog with the ice blue eyes staring out at him from a cage in the Auburn animal shelter.
She was striking and people would cross streets to ask the name of her breed. Part lab, part husky, maybe shepherd, but definitely all hound. The kind of dog that wasn’t above nosing through a bit of street trash or rubbing herself in deer scat.
Nikki was a gentle, faithful beast, a coward first class afraid of baby gates, the sound of keys or a newspaper, the stove, thunderstorms, fireworks, lakes, streams and the ocean.
Early on she was an escape artist, well known in the neighborhood for running out of any unlatched door, or when tethered in the backyard pulling on the steel cables so hard she broke them dragging the post behind her as she trotted happily up the street.
A clever girl, Nikki learned to roll on her back and rub the carabiner hooking her collar to the chain unhooking it to set her free. Once gone, Nikki would reappear two streets away hanging around the porch of a nice Chihuahua who was her friend.
Indoors, Nikki curled up behind Charley’s chair while she worked at home, watching for any movement that would indicate a walk was imminent. She slept on the floor at the foot of the bed, and kept up the practice in the motorhome.
Returning home from
work, the pack often found Nikki wearing a guilty look as she slowly slunk off
the couch as the car pulled into the driveway.
Nikki became a companion to Rusty and later Pocket, felines who tolerated her presence.
Nikki joined the pack on its adventures in rving enjoying sniffing new places, exploring the beach and mountains and meeting new people. She put up with traveling in the motorhome often trying to fit her 50-pound body onto Charley’s lap when the road was bumpy.
It was obvious this winter that age was beginning to take it’s toll on our Nik. Her walks were not so far, she tired easily and slept a lot more.
But on her last day, Nikki played with her pack, chasing sticks and balls, and rolling over for a belly rub.
When we pull into a new place one of the first things people notice about us is Nikki.
Nikki is our all black dog with sky blue eyes. Little kids ask if she’s a wolf. Adults will cross hot parking lots to ask us about her breed.
That’s easy. Nik is an all-American mutt, part lab, part husky, maybe a little shepherd, and all fraidy cat. She is a 50-pound lap dog, at least she would be if she could fit on your lap.
We were told she was nine months old when we rescued her from the pound. The trouble is Joe and I can’t agree when that was. Did we get her before 2005 or after? Either way the dog that used to pull my arm out of the socket on walks now is an old lady.
Before we went on the road people asked us if we would travel with our big dog. Of course! We never thought about leaving her behind, even if you have to be careful not to step on her in the middle of the night on the way to the bathroom,
On travel days Nik spends her time trying to crawl up on my lap or sitting on the floor between the two seats. If you drift into the rumble strips, Nik jumps up wanting to know what’s going on. Only wrapping her in a “thunder shirt” calms her down.
Once we park, Nik takes a walk around our new campground checking out the smells. Then she crawls under the motorhome for a nap.
Nik got a full check up before we left on the road. She’s a bit slim and a little gray around the muzzle. All in all, not bad for an old broad.
We were parked in a KOA in Lillian, Alabama on the Gulf Coast last week when we noticed Nikki wasn’t herself. She wasn’t eating or drinking much. She didn’t want to play with a tennis ball. She certainly didn’t want to walk very far and she panted, a lot. Was it the heat? Old age or something more?
The next morning Nik’s back legs wobbled and collapsed as we were encouraging her to drink.
My first thought was heart trouble. This is it we’ll be putting the old girl down soon.
Joe called three local vets before finding one able to see her at the Westside Animal Clinic over the border in Pensacola, Fla.
Our old girl gave a loud yelp when the doc touched her back haunches during the examination.
An x-ray and blood work later, showed that Nik is healthy, better than most dogs her age. But she has arthritis in her back. After a shot and pills for the pain we were on our way.
Nik still doesn’t pull your arm out of the socket on a walk. But, she chases balls again jumping to catch them in midair. If I let her go, the bunnies roaming the grounds of our latest stop in Dunedin, Fla., wouldn’t stand a chance.
Our old companion is feeling much better, and so are we.
As I write this I’m in a campground in the George Washington Jefferson National Forest in Virginia. Our home is parked in the middle of the Cave Mountain Lake Campground road where it died.
I keep reminding myself there’s joy in the journey, no matter what.
Originally I was going to write about the wonderful time we had in Pittsburgh. Joe’s veins are fixed and up to date. I had two teeth pulled and my jaw didn’t collapse.
We spent two holidays with my Uncle George and my cousins, which was great. We found a loving church near our apartment and settled in volunteering in Pittsburgh.
Last week Joe drove the motorhome to our Jayco dealer in Buffalo to have some warranty work done. Wednesday we waved goodbye to Western Pa. and headed south to the Virginia mountains.
Over seven hours of driving our rig performed well. There were no traffic tie ups, and except for Nikki, our big black lap spending her entire time shaking and trying to crawl onto my lap, it was an uneventful drive.
We pulled off I-81 and onto some back roads that took us through Buena Vista and headed for the Cave Mountain Lake Campground run by the U.S. Forest Service. The plan was to do a couple of days rustic camping before heading to the Smokies and eventually Baton Rouge where we are scheduled to help rebuild houses that were damaged in a flood.
We pulled into the campground and easily found our site. We were talking about unhooking the Mini Cooper and backing the rig in when Joe put the vehicle in park. Or I should say, he tried to put the vehicle in park.
The gear shift wouldn’t move. Joe shut off the engine. Tried to put it in park again. Now the engine wouldn’t turn on. We were stuck in the middle of the campground’s road.
Oh, and did I mention the mountain campground is rustic with a lovely rushing creek, beautiful trees, birds chirping, and no cell phone service whatsoever?
Lucky for us the camp hosts have a landline, for local calls only.
You may well ask where’s the joy. You’re stuck in a park with a disabled motorhome waiting for a tow that’s going to cost who knows what to take who knows how long to fix whatever.
If we hadn’t been stuck I wouldn’t have spent a wonderful evening chatting with Alison a New Englander who moved to Winchester, Va. , two years ago. She’s trying to understand Southern culture and visiting the parks in her new state. She’s also a mother reveling in her daughter’s college adventures while aching for a stepson who recently died after years of battling a drug addiction.
We wouldn’t have met Joan and her dog Todd, the camp host with a dry sense of humor that let Joe use her landline. I think Joe now owes her three dinners, maybe more, for her kindness.
And we wouldn’t have met Tom and Debbie, two more camp hosts who spent an hour keeping me company while Joe negotiated wreckers and Ford dealers. We spoke about RVs, the granddaughter they’re raised and life in general.
They all brought us joy amid a break in the journey.
As for the rig, well after being stuck almost 24 hours in the middle of the road and multiple phone calls to Ford dealers within a 100 mile radius who wouldn’t repair the engine, Joe finally found someone to tow and fix the rig. But first, the owner suggested he send out a mechanic to see if the problem could be fixed on site.
Roger from Auto Towing & Repair in Lexington showed up about 40 minutes later. He looked under the rig, moved the gears some and then removed the dashboard panel. A cable that connected the gear shift to the transmission had jiggled loose.
Roger reconnected the cable and then put a twist tie around it to keep it from jiggling out again. It was a ten minute repair.
We had expected to spend our winter exploring southern Texas and Arizona, but God had other plans.
A minor medical procedure on Joe’s legs has forced us to spend the winter in Pittsburgh. But that doesn’t mean we’ve given up exploring.
Currently we’re living like college students above a store front on Warrington Avenue in the Allentown neighborhood of Pittsburgh.
Because we live upstairs, we can’t just tie Nikki out like we would in a motorhome. That means at least four times a day Joe takes the dog out for a walk in the neighborhood. Nik’s a great ambassador. People who won’t look up when you pass by will stop us to talk about our blue-eyed dog.
On his daily walks Joe found two really cool buildings.
On one of his walks Joe noticed was a two-story brick building and tower up on a hill a couple of blocks away. Climbing the hill for a closer look he found the 1909 Beltzhoover Sub-District School.
The Beltzhoover Sub-District School was built in 1909 and is on the National Register of Historic Places.
The building was used as a school until sometime in the 2000s and is now for sale. It’s an impressive building that’s on the National Register of Historic Places. We don’t know why it was placed on the register. Did someone famous go there? Was it designed by a well-known architect? Information about the school is not yet digitized on the federal government’s website.
While researching the school, a story in the Tribune about one of the six oldest houses in Pittsburgh popped up. It’s a little field stone house near us on Climax Street.
The building dates to 1794 when German immigrant Melchoir Beltzhoover, who bought 248 hilltop acres on what was then the western frontier and built a house on his farm. There’s a Facebook page that explains a lot about Beltzhoover, his family, business and how he came to Pittsburgh.
The front of the building on Climax Street looks like a 1900s store front that was later converted to housing. The vacant lots beside it are weedy and overgrown. The store front is attached to the two-story field stone building. The news story says someone from Baltimore bought the building and land for $20,000, but he hasn’t done anything with it.
It’s not likely anything will be done to the building. Beltzhoover is not a prosperous area by any means. The properties around the homestead are run down or abandoned and that area of the city hasn’t drawn developers to redevelop properties like the South Side, the Mexican War Streets or Lawrenceville.
The Beltzhoover homestead sets me to dreaming. What would I do if I had the money to return that old house to its former glory? And what else lies undiscovered in this neighborhood?