A Step Back in Time, then a Giant Leap Forward

On a beautiful Saturday in October, we did something we have wanted to do for a long time. We rode the V&T Railway roundtrip from Carson City to Virginia City with friends.

There were plenty of characters dressed up to take us back over 150 years.

It was fun to look for wild horses and old mining facilities and it was also interesting to imagine traveling across the country by steam train.

A dog’s tail and leash between the seat and the back of the seat.

Andy met us in Virginia City because he had to go to cross country practice. We got him a one way ticket for the ride back.

Our gang with St. Mary’s in the Mountains Church in the background: Rita, Maddie, Paul, Alice, Andy, Stan, Chuck, and David
The steam engine chugging away after dropping us off. Photo credit Andy Macdonald
4th Ward School. Photo credit Andy Macdonald

We hiked uphill to lunch at Cafe del Rio. There was a zombie group scavenger hunt going on so it was nice to be on the south side of town. Most of the competitors were in costume but not many looked like zombies. There were a lot of people running around though. After lunch we toured the Chollar Mine. The guide had interesting facts about the mining industry in Virginia City since the 1860’s.

Paul and Maddie in front of the mine entrance. Photo credit Andy Macdonald

After the mine tour, Stan and I had had enough walking and I had enough pollen, so we walked back and sat in the train car with all the other old tired folks.ūüėē The rest of the group hiked back up to C Street for ice cream. 

Andy enjoyed the train ride back down to Carson City. When we got back to Carson we all parted ways and Andy rode with us to drive back up to Virginia City to get his truck. Even with my allergies it was a really fun day.

Now we will stop in present day for a moment. It was time for my three month feeding tube change and my sweet and funny husband changed it for me.

Now the giant leap into the future: I finally started the first new drug for ALS in 20 years. I call this a giant leap into the future because there are so many promising new drugs in trial or close to trial, so future ALS patients should have treatment options.

Radicava in my hands finally! Photo credit Alice Hilsabeck

We got approved to start home infusions with only one training session because Stan was an EMT. And our friend Alice is a retired nurse and she is willing to be the backup.

Five days of Radicava that would be coming home with us.
I am so lucky to have my wonderful husband and friend willing to help with this.

Our Option Care nurse, Pamela, was an excellent trainer. She explained everything and instructed us in the need for sterility since the drug is going into my Vena Cava through my port. She placed the infusion needle in my port and I was ready to go. Stan learned how to do the infusion.

This and all remaining photos credit Alice Hilsabeck

I am so happy to finally be on this drug. The reported 30 % reduction in progression of ALS is huge. The only other drug for ALS available before this only extends life for a few months. 

For all United States ALS patients still waiting to start, I recommend that you be your own advocate. Call your nurse educator. Call Searchlight Patient Support and ask for your patient ID number and your case number. Then ask to talk to your case manager for the status of your approval. You also may have to call your insurance company, your neurologist’s office, and the infusion company. Make sure that you tell everyone that every day makes a difference in this disease. The local infusion company wanted me to wait until next Wednesday to start three required days of training. But we asked if there was any way to start sooner, for instance, could I come in to their facility? And the answer  was, “Yes, tomorrow.” Woo hoo! The pharmacist did call Stan to talk with him and verify his training. 

Love of friends and family, connection with friends, family, and medical professionals, and hope that this drug will allow me to see my son become a man and allow me to be around for the next ALS drug that comes along –  potentially halting or reversing the disease. Let’s hope.


Central Nevada Fun and Not So Fun Fires

To recap from last week’s blog: we left on my birthday to drive to Miles End B and B Lodge in Kingston, Nevada. When we arrived my dad and stepmom were already there as was Rod, Ann the proprietor’s brother and also Stan’s friend from childhood. We had a nice dinner at the Friday night social gathering where John sells his wonderful food and neighbors gather to enjoy each other.

Andy and my dad
Stan and Anita, my stepmom 
Birthday girl with father and husband. My eyes were irritated from my meds, so they were closed in most photos.
Anita and me
Our host and friend,  John
Our other host and friend, Ann

Our friends, the Peters, arrived later, having driven from the Sacramento area.

On Saturday, we decided to go up Kingston Canyon to Groves Lake for lunch.

We found a nice grassy slope, perfect for picnic and swimming.
My dad, the big city guy, braving the wilds of central Nevada.
Only Andy and Maddie braved the cold water

Stan and Paul and our lunch view

Stan and Rod

The kids rode our RZR side by side aka the dust mobile down the canyon.

Photo credit John Saunders
Dusty faces, photo credit John Saunders

I enjoy riding and driving the RZR side by side too, although the dust really irritates me because I can’t cough. We started using dust masks this trip. They helped.

My dad and Anita left the next morning, Sunday. While Rod went for a hike, the Peters and the Macdonalds decided to do a dirt bike and side by side ride on a pole line road in Big Smoky Valley. A couple of us took the truck to Carvers for gas, and met the others where the pole line road met a well graded road.

After lunch in this spot, we decided to head back to Miles End for a relaxing afternoon.

Andy did some fishing, and I got to take a nap. We had a wonderful dinner, as always. 

Andy wanted to try some Painting the Night with Light photos of the old mill in Kingston (inspired by the Nevada Magazine photo seminar the week before). Erika, Maddie, and I went along. After two dead camera batteries  (poor planning on my part) we decided that Andy would have to scope it out in the daylight first anyway.

The next morning, Rod left to drive home to Carson City. The Macdonalds and Peters drove to Diana’s Punch Bowl in Monitor Valley to try cooking hot dogs in the near boiling water.

Diana’s Punch Bowl from the highway
Andy and Maddie looking over the edge
Erika, Andy, and Stan getting the hot dogs ready.
Casting into the Punch Bowl
A hot dog entering the water. That’s vegetation sticking out above it, not the fishing pole
Since this was an experiment, the Peters brought their Hibachi grill as a back up

We wished we had brought a thermometer to get the water temperature because the hot dogs were warm, but not hot. Our own Mythbusters episode without some key measurements! Thank you to #travelnevada for this fun idea!

After lunch, the Peters headed for Highway 50 to go home, and we headed over Peet’s Summit, back to Miles End. When we got back, our friends Chuck and Alice had arrived and were all checked in. Andy checked out the mill in the daylight and did some more fishing. The rest of us relaxed.

We had another wonderful dinner and Ann and John relaxed with us afterward.

I was not feeling well, so Stan took Andy out to help with his nighttime mill photos. They had fun and got some photos that Andy can layer in Photoshop.

The next day was 4th of July and we all drove about 60 miles to Belmont, Nevada for their old-fashioned 4th of July celebration. Even Ann and John took the day off. Belmont’s 4th of July included a parade, a bbq lunch, and old-fashioned games like sack races and 3 legged races and running races, as well as an art sale in the Historic Belmont Courthouse.

A military kazoo band led the parade

The parade included kids on decorated bicycles, lots of decorated side by sides, and even he who shall not be named and Melania were there!

The parade ended with a float that had a tribute to a fallen soldier.

All gave some, some gave all
All gave some, some gave all

When the last float reached the reviewing stand, the announcer read the names and locations of all the Nye County natives who are active in the military. Then a giant flag was unfurled and everyone got to hold it.

The theme songs of the Army, Navy, Air Force, Marines, and Coast Guard were sung. We all had song sheets with the words. After the songs, a moving Civil War story about the origin of the song Taps was read and Taps was played. Then it was time to properly fold the flag. All the veterans and Boy Scout Andy knew how to fold it.

This little cutie had painted her own flag on the front of her mini RZR on the back of her parents’ RZR side by side

Andy got 2nd place in an age group running race.

His prize was a dollar coin and a lollipop

The sack races were very cute.

The Historic Belmont Courthouse

On the way back to Kingston, Andy got to try some bouldering.

And then we had a scare on the drive back.

A fire that appeared to be in Kingston Canyon
Photo Credit Alice Hilsabeck
Photo Credit Alice Hilsabeck

It wasn’t until we got very close to Kingston that we could see it was north of Kingston by several miles. Ann is part of the Kingston Fire Department so she had to gear up and head to the fire. The rest of us loaded up dirt bikes and the side by side and our suitcases in case of evacuation. But with very little wind, the fire was under control after about 5 hours. So Ann was back to join us for dinner. She served red white and blue sundaes for the holiday dessert.

Chuck and Alice with their patriotic sundaes
Stan and Ann, friends for over 50 years
Saying goodbye to John
And to our favorite dog, Zee

After saying goodbye to our friends, we drove home on July 5, passing three other fires. We drove through the lower Truckee River canyon seeing flames near the road. Right after we went through they shut down the road, and it didn’t open again until 2:30 A.M.

As I write this, there are fires in California, Nevada, Arizona, Colorado, Montana, and British Columbia. Some of the lyrics from U2’s Bad seem somehow approriate:

This desperation
Separation, condemnation…..
Let it go

From U2’s song Bad

As we drove toward Kingston, we thought that everything we had there was replaceable. But we also thought of all the people and animals up the canyon. So many people across the west are being desperately dislocated And separated from everything they own, and all that will be left is desolation. And though it’s extremely difficult, you have to let it go.

Just like ALS. You can’t fight the progression and in the end, you have to let it all go. And more from Bad: I’m not sleeping. (Yelled:) I’M WIDE AWAKE. I am going to live with this disease, and LIVE until I die.

I have ALS, ALS doesn’t have me. 

– Andre Williams, Jr.