Two years later

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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.

But then…

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.

Praise God!

Why I wanted to be Uncle George

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They laid my Uncle George to rest today with full military honors and a button box band.

It’s the way he would have wanted it.

I’ve often told people I wanted to grow up to be Uncle George.

George Unger met Ellen Stevick, my dad’s youngest sister, at a wedding. That night he told his mom she was the girl he was going to marry.  They were married for 46 years and had four children.

I knew Uncle George the best out of all my Stevick aunts and uncles, probably because he was around the longest. The Stevicks were a large family of four boys and three girls who all died relatively young, many before retirement age. George outlived them all enjoying life more each year.

My first memory of Uncle George was when I was 12. I spent a week at his house visiting my cousin Joy. Joy and I are a month apart in age. We laugh at the same things. She gets my jokes. My husband says we’re each one half of the same brain.

That week Uncle George had a glass of wine with dinner. I thought it was the most sophisticated thing I’d ever seen. When my dad wanted a beer he went to the Churchill Valley Lounge.

While other couples bounced their way though polkas at family weddings, George and Ellen were elegant dancers, a polka Fred Astaire and Ginger Rogers. After she died in 1997, he held a picnic every year to celebrate her life.

Uncle George owned a vending machine business in the 1960s at first using his Volkswagen Beetle for deliveries. By the 1970s, he was also selling recreational vehicles.

He was the first person I ever saw using a Blackberry long before I stood next to Hillary Clinton’s aides tapping away on them during a rally in Central New York.

I never discussed politics with Uncle George. He certainly knew where I stood, however, and on my birthday he handed me a $3 bill with Hillary’s picture on it. Cracked me up!

George owned a Cadillac and a Smart Car. He fell in love with motor scooters, driving his kids to distraction whenever they learned where he had been on his rides. He bought his last one about two years ago to celebrate a good medical report.

He baked bread and made his own wine, freely giving both away.

George played the button box accordion practicing at all hours, holding jam sessions with his buddies in the barn and playing polka masses.

Musicians playing the button box for Uncle George

The Ungers always had a dog around the house, a series of collies or golden retrievers who greeted you as you got out of the car. The last was Lucy, a golden doodle who bounded after Uncle George when he drove his Gator, robe flapping in the wind, up the steep driveway to get the morning paper.

In January, Uncle George turned 89. He had slowed down. Cancer gnawed his bones. His ribs cracked. It hurt to breathe. He went to the hospital.

A couple weeks ago, Uncle George returned home.  His children, Kevin, Joy, Jill and Heidi, and the grandchildren took turns watching over him. Lucy stayed by his side.

At about dawn on May 6, he died.

Today my Uncle George was buried in the National Cemetery of the Alleghenies. He picked a plot there because he told me he liked the view.  There were full military honors, with a gun salute.

Oh, and a button band played at the funeral home before the service.

When I grow up, I want to be Uncle George.

Military honors

Pool and virus

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Pool table in our apartment lobby

This pool table reminds me of my favorite Stephen King novel, The Stand.

The ball on the table hasn’t moved in almost a month.

 Long before any government said we shouldn’t hang out together, our apartment building banned people from its common spaces to stop the spread of the virus. Not that we hung out all that much anyway, but a round of eight ball might ease our boredom in the afternoon.

Here’s why that lonely cue ball reminds me of The Stand.

In the novel the Army sets off a pandemic that kills almost everyone when a bioweapon flu called Captain Trips escapes the lab. One solider panics, escaping as the gates are closing to seal the facility. He carries the virus into the world. That sets up a good guys versus bad guys scenario that is typical of King’s novels.

In an early scene, one of the last people left alive in the Army lab is sitting in his office looking at images on the surveillance cameras of the cafeteria where a man has died face down in his now congealing soup. The flu has stopped normal life and nothing will ever be the same for the novel’s characters.

As we walk across the lobby bridge to head up to our apartment after our daily walk, I always look down at that ball on the pool table. It’s become my congealing bowl of soup.

We’re not in a King novel. There’s no battle between good and evil with the good guy winning in the end. There’s only washing our hands, staying away from other people and waiting it out.

King’s novels always show the resilience of people. We’re experiencing that resilience with neighbors bringing food to neighbors, calling each other and saying Hi to strangers on the street from six feet away. We will get through this without a battle to end our novel. Just diligence. Normal life will return.

By the way, the ball moved last night.

Coronavirus comes to the Hannagans

Tissues in search of a nose

The coronavirus has hit the Hannagans.

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.

Feeling grateful

The West Penn Hospital parking bridge is strung with green garland, red bows and lights. It’s cheery.

Joe and I gasped at the same time the first time we saw it.

We cross that bridge …a lot.

West Penn is home to the Mellon Cancer Pavilion and where my cancer doc is located. I have metastatic malignant melanoma. Stage 4 skin cancer. There’s no cure for it.  There’s only keeping it at bay with treatments every 21 days to kick start my immune system.

I haven’t written in a while because I was terrifically depressed.

When I was first diagnosed, every night I lay next to Joe in bed and cried. Sad sobs, telling him I didn’t want to leave him. And how selfish me didn’t want him to be alone, but didn’t want him to take up with another woman either after I died.

(He is a catch. Devoted husband, father and grandfather who has supported me twice through cancer and still brings me tea every morning. I am spoiled.)

The first time I attended church I cried. The lady behind me handed me a pack of tissues during the service. I’m not angry at God or even questioning my condition. I’m just sad that I’m going  through it and sad for losing the life I had planned. Sad for my family.

Friends have sent me wonderful cards and best wishes. It’s nice to know people care.

Over the course of the month, really after my first infusion, my outlook lifted. I feel like something is being done. I have a slight rash, which the doc says occurs 90 percent of the time when the therapy is working.

I’m happier. I look forward to our changed future.

We’re stationary. We live in a one-bedroom apartment in a converted school in Pittsburgh. There’s a pool table in the lobby. Joe keeps making jokes about walking the halls wanting to tell students to get back to class.

The apartment is HUGE compared to the motorhome. One bedroom with big classroom sized windows and a dishwasher.

The future doesn’t include living full time in our motorhome, but we still plan to travel in it between treatments.

We can walk to the grocery, a really good bakery, restaurants, the drugstore, our bank and our church. We’re a mile from our daughter. We saw fireworks from the building’s rooftop on Light Up Night in Pittsburgh.

We’re still volunteering, just not traveling the country to do it. We hooked back up with the church we attended last year and volunteer with their community meals and food pantry. We fold clothes for the clothes closet. We painted the stage ceiling.

I love their vision: Love God, Love People and Do Something About it.

When the homeless shelter on Smithfield Street reopens we will volunteer there again too.

Joe’s back climbing at the rock climbing gym and I’m doing yoga there. We take long walks overlooking Pittsburgh. I plan to run a 5k in the spring.

And in July we’re taking the whole family, eight of us, to Hawaii.

I’ve decided not to put off the things I’ve always wanted to do. If I’m going to have a shorter life span, then I’d better get crackin. There are places to go and people to meet.

In the meantime, I’ll cross the West Penn Hospital parking bridge at least twice a month. I wonder if they decorate it for Easter?

Treason

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.

The episode where we break down

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. repair

 

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.

Ten minutes and $120. Joe also gave him a tip.

Roger brought us joy, and a twist tie.

 

 

 

 

 

Why I was staring into the men’s room

head

 

Whenever Joe and I go to a national park I always ask a ranger what I should go see. What is something cool that most people miss?

That question lead me and my cousin Joy to poke our heads into the men’s room of The Duquesne Club in Pittsburgh.

The Duquesne Club is a private club founded in 1873 by industrialists like Andrew Carnegie as an exclusive men’s club. The building on Sixth Avenue opened in 1890 and the club didn’t admit women until nearly a century later. It currently has 2,400 to 2,700 members, according to the concierge I spoke with.

You have to be invited to join. My invite must be lost in the mail, or my spam folder.

My cousin Joy and her husband Scott, however, got an invitation to an event put on by their financial adviser. I jumped at the chance when they asked Joe and I to tag along.

Joy and Scott
Joy and Scott snuck into the “Members Only” lounge at the Duquesne Club.

 

The event was fun, two comedians, drinks and hors d’oeuvres. No sales pitch. Better yet, afterwards we were free to roam around the exclusive club with its walls filled with original art, including some Frederic Remington sculptures, and beautiful antiques.

 

That’s Joy standing beneath a painting of Cousin Andrew.

Joy and I stopped by the front desk near the revolving front door where a doorman dressed in a black coat and bowler stood outside on the sidewalk. We peppered the concierge with questions about the art work and the people who’ve stayed overnight in its 42 hotel rooms.

So what’s the one thing we shouldn’t miss? I asked.

The first floor men’s room, she replied. The concierge explained that the men’s room is huge.

It was a men’s club for a century before it opened membership to women. The room is now a little smaller after renovations to install a women’s room. After weddings you’ll find the brides and bridesmaids in the men’s room looking around, she said. Just get your husband to go in and open the door wide, she said.

Joy and I had to go to the men’s room. Forget the tired husbands, our aching feet in high heels, we had to see this plumbing wonder.

Down the oak paneled hall, past the billiard room, across from a large glassed in dining area was the magic door marked “Gentlemen.”

Scott pushed open the door and held it wide.

It was the largest men’s room I’d ever seen. To the left was a shoeshine bench, rows of sinks stood along that wall. The entire room was done in marble.

But don’t ask me about the urinals, I didn’t look to the right.

Joe was unimpressed. “It was big and marble.”

mens room
The men’s room at the Duquesne Club.

 

 

 

 

 

 

 

 

 

 

Undiscovered Pittsburgh

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 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.

old house pix

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.

old house front
Beltzhoover homestead

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?

 

 

“Classical Gas”

 

3708CGTX

As I write this in the kitchen of our Pittsburgh apartment I hear “Classical Gas” playing over and over in the living room. It’s the music Blue Cross and Blue Shield of Central New York plays while you’re waiting on the phone.

Da, da, da, da dah. The classic opening notes play over and over.

Waiting. That’s what we’ve been doing since December when Joe visited a vein clinic while we were in da’Burgh visiting family. The plan was to get those varicose veins taken care of and then head south in the motorhome for the winter.

Quick catch up. The vein doc grounded Joe from driving long hours in the motorhome until he could fix the veins. A blood clot could form and go to his heart, the doc said.

Da, da, da, da dah. “Thank you for holding. Please stay on the line for the next available representative.”

Even though two docs say Joe needs the minor surgery, the insurance company forces patients to wear a compression stocking for 12 weeks before the company will approve surgery.

The 12 weeks was up Feb. 27. Joe sees the doc to schedule surgery. Not so fast. The nurse tells us the insurance company will take four to six weeks to get approval for a minor surgery that could have been done three months ago.

Joe calls the insurance company the next morning and immediately is put in hold hell.

Da, da, da, da dah. The first three bars of the music plays. Again.

I learned to play “Classical Gas” on the guitar in high school. It was the height of my guitar training. I was proud of myself for learning to play it. I’m beginning to hate this song.

A representative comes on the line. Joe explains our plight. We have places to go, people to see, volunteering to do. Can Blue Cross expedite the approval process?

Nope, the representative says firmly. You have to wait four to six weeks before we will approve it.

May I speak with your supervisor? he asks politely. He’s more polite than I would have been. I’ve been known to become “Mrs. Hannagan” my Hyde personality when I get frustrated with annoying clerks.

The music comes back on. “Please continue to hold. We will be with you momentarily.”

The moments stretch out to minutes, tick on to quarters of an hour.

The supervisor comes on the phone. You need all the diagnosis codes before we can approve anything, she says. An obvious ploy to get this annoying customer off the phone.

“I have those,” says Joe as she continues to speak over him. “I got them from the doctor to expedite the process,” he says, again very politely.

Da, da, da, da dah. More music as this rep speaks to HER boss.

You’d think they’d allow the rest of the song to play as long as you have to wait. Or maybe switch up songs to something more fun. “Best Day of My Life” by the American Authors comes to mind.

The supervisor returns to the line.

The insurance company can expedite the process, she says. But, you can’t give us the diagnosis codes. We can only take them from the doctor’s office.

Forty-five minutes, and two representatives later, Joe is closer to getting approval for surgery.

He calls the vein clinic where he gets a person on the phone right away. We’re sorry the person who submits information to the insurance company won’t be in until Monday.

I wonder what music the vein clinic’s telephone system will play?