Eclipse exceeded expectations in every way 

Who would go to a baseball game with fireworks after, the night before leaving vey early on a Great American Solar Eclipse trip? A busy family that had to squeeze in a family night on the only available night this month. Our local Reno Aces (AAA Arizona Diamondbacks) were playing the Sacramento River Cats (AAA San Francisco Giants). Andy’s allegiance was torn between the local beloved Aces and the AAA team for our beloved Giants.

We were seated on the home plate side of the Aces dugout. Andy went down there at the end of the game and asked if he could get a bat. He got one that was in the trash – he said the player tapped it on the ground and gave it to him and said it’s not broken. When we examined it later, it had two rectangular dings in it. Baseballs don’t make rectangular dings, so we realized this bat had probably been used to hit something in the dugout in anger.

Andy with his prize bat. The best souvenirs are free. My camera was still focused for fireworks, hence the blurry photo. 

When we got home, Andy said, ‘That was fun!”  We all had fun!

It turns out that fireworks were the perfect prelude to a truly amazing trip. Andy had to stay home for school, Cross Country practice and orchestra commitments. Our friends Erika, Paul, and Maddie from Eldorado Hills, California picked us up for the road trip to Idaho. We stopped for lunch at The Griddle in Winnemucca, where I ate breakfast every day when I was in Winnemucca for work 20 some odd years ago. Memories!

This car was parked next to us:

We didn’t yet realize that epic was the perfect word to describe our trip too.

When we got closer to Idaho, Erika, who grew up there, was amazed to to see a steady line of cars going north on a road where cars are usually few and far between.

We arrived at Erika’s parent’s beautiful home in Parma, Idaho, in time for dinner, which included fresh sweet corn picked right out the back door. After dinner we relaxed on their patio.

Bill and Pat with granddaughter Maddie walking between, armed with a salt gun to kill flies,
Stan and Paul
Erika and her dad

John and Thien arrived from Granite Bay, California after exploring Boise and having dinner there.

Maddie hung out inside, writing. A girl after my own heart.

Bill’s brother, who lives down the road, had gone to the family cabin for the Eclipse, so Pat and Bill went down the road to sleep so Stan and I could have their Master bedroom. This was incredibly kind of them.

But Bill was back the next morning, making huckleberry pancakes.
Thien and John had recently returned from New Zealand where their son Alex is spending a semester. While there, Thien found the butter she grew up with in Viet Nam. She said when she was a kid she didn’t know the butter was from New Zealand. She brought home 8 cans.

After breakfast, Bill, who was born and raised in Parma, took the guys on a scouting tour to pick out our viewing site for the total eclipse. Maddie helped her grandmother in the kitchen.

Pat, Erika, and Thien

After the guys got back, they worked on their eclipse viewing mechanisms.

Perfecting the projection screen.”We found the corona!”, notice the beer bottle.

Then we went for a great Sunday lunch at the Parma Ridge Winery.

We played musical chairs so we could talk with others in the group. I had been next to Maddie, conversing with her. Stan asked what was going on over there and this was my response: Maddie and I were whispering.

The beautiful view across the Treasure Valley

Erika bought John and Thien, and Stan and I, souvenir Eclipse wine glasses,

Thanks Erika, for the beautiful wine glasses to remind us of a wonderful trip with friends we love!

After lunch, Bill took us on a tour of the Parma farming areas. This area grows crops for seeds to sell.

This would be considered an abandoned field in Nevada, but here it is a field full of alfalfa seeds ready to be harvested next month. The sheds are for leaf cutter beehives.
Hops is a major crop in the area.
Bill teaching us all about hops.
Stan was so hoppy! He loves hoppy beer.

more teaching

It was so interesting to learn about seed farming from a true expert. As we headed back to Pat and Bill’s home, I said, “please keep driving. I love learnimg,”

When we got home, Erika saw in her news feed that Neil DeGraase Tyson looked for the place most likeley to have clear skies for viewing the total eclipse snd the best ice cream, and he was spotted in Boise ice cream shops. That made us feel good about our location.

The next day was the Great American Solar Eclipse. We left at 6 a.m. to try to beat the crowds. Traffic was light. We drove many miles on a dirt road to Paddock Valley Reservoir.

This turned out to be the perfect viewing spot. It was beautiful.

There was a group camping on the beach so we went to the boat ramp. We had a few hours before the event to get set up.

Paul getting solar binoculars ready. (photo by Erika Peters)

There was even a bathroom! A few other people trickled in, including a high school astronomy and geology teacher. Everyone in our area was from nearby in Idaho. Erika knew some of the families from growing up in Parma. It was a far cry from the masses of humanity I was expecting, and that’s a good thing. 

Our group, sans Maddie in the car, ready for the show.

The projection screen attracted lots of interest. I set my camera on auto on a tripod and captured different moments of the moon’s passage. I am glad the projection screen was in my photos.

A dad with two sons, checks out the projection screen
These people told their little girl that the circle on the projection screen was a cookie with a bite out of it. The sunspots that showed up on the projection were called raisins

(photo by Erika Peters)

The two minutes of totality can’t be described by words or photos. I will try, but you really need to go find your own total eclipse to fully understand. Google future total eclipses and plan it. 
First some pre totality notes:

  • I predicted that I would be the only silent one during totality. since I can’t speak.
  • We told everyone that you could take your solar glasses off during totality. A guy said, “Says who?” The answer was “NASA, and we believe them.”
  • A guy came by and asked John if he was the smartest guy in the group. He said, “I am pretty smart, but when I have questions, I ask him,” pointing at Stan. The guy then appointed Stan captain of the parking lot with the job of telling everyone when they could take their glasses off.

So then totality. Two unbelievable minutes. I was not quiet. I squealed and was giddy. John had goosebumps. The cows stopped mooing.

First I will share some photos of the show in the sky.

This is pretty much what we saw in the sky, looking up without glasses. (Photo by Ken Gephart)

This is my favorite raw photo because you can see solar flares. (photo by John Russell)

My auto exposed (long exposure) photo doesn’t give you the true light level. We could see light to the north and the south but the sky in the shadow was dark. It actually looked like late twilight.

When the sun came out from behind the moon, we were all high-fiving each other, as if we had achieved a victory. Stan said it was the best day in his nerd life since the first man on the moon. Most people left soon after totality, but the dad with the two boys went fishing. We hung around a little longer.

(photo by Maddie Peters)

Then we drove back to the Gotsch home via back roads, passing over the I84 freeway that was bumper to bumper. 

We made it back to the farm after the eclipse and had an adrenaline letdown. I was totally pampered by Maddie who gave me a pedicure.

Pedi by Maddie

And then the long drive home on Tuesday. This time John and Thien caravaned with us, and we stayed in radio contact. We all ate lunch at The Griddle.

In Winnemucca, we passed the giant Idaho potato. Erika was so excited she called her dad. She had never seen it before.

The Giant Idaho Potato in Reno. (photo by Elizabeth Cummings)

We had the perfect setup – Paul driving with Stan in shotgun seat, Erika and I in the back seat, and Maddie in the way back, watching movies or sleeping. Stan and Paul kept a conversation going between them, which left Erika and I to have a “whispered” Boogie Board conversation. It was a girlfriend pow wow and it was awesome.

It could not have been a nicer trip, thanks to the Gotschs, the Peters, and the Russells, and of course the sun and the moon. It was wonderful trip with people we love.

Party, Progess and Plans

Andy went backpacking with Boy Scouts from Mt. Rose Highway to Spooner Lake on the Tahoe Rim Trail. Both Stan and I would have loved to go along but our backpacking days are over. Thankfully one of the dads who went along took photos.


Photos by Shane Sykes

Andy had fun and he said it was beautiful – that is Lake Tahoe behind him. He left Saturday morning and got back Sunday afternoon.

We left Sunday morning and flew to Las Vegas for Stan’s dad’s birthday party. I was looking forward to no pat down going through security because I already had breakfast, and all my food was in my checked luggage. But I learned that my wireless keyboard and Boogie Board now count as electronics bigger than a cell phone that must be taken out. Maybe someday I can get through without the time consuming and personal space invading extra search.

When we arrived, Stan’s brother Scott and his granddaughter Lillee were already there from Grand Junction, Colorado. Cathy, Stan’s stepmom, and Lillee were in the pool.

Stan’s dad, John, enjoying a visit with his sons, Scott and Stan.
Everyone listening to John.

John loves to talk and you can find out interesting things from him, like this family story I had not heard before: Stan’s grandfather was a pharmacist in Texas and he dated Bonnie of Bonnie and Clyde before she met Clyde. John said his dad had a photo of himself with Bonnie Parker and he thinks he now has it and will look for it. We are all lucky that Clyde came along and snatched Bonnie away because Mac moved on to Kansas and fell in love with Olive, who worked in his pharmacy, and Olive was the nicest person you could ever meet (Stan’s grandmother).

I took a little nap and then went in the pool with Lillers, as I call her. She is going into 4th grade. We had so much fun. There were wasps coming out of the bushes and Lillers would use the pool net to catch them and hold them under the water for a long time before they would drown. We devised a signal for wasp since I can’t talk. If I saw one I held up three fingers to make a W for wasp. She was quite good at catching them. She is a great swimmer and showed me some of her tricks. Then we played Ninja Warrior. There were two floats, two noodles, and two pool weights. She would have to run across moving floats or run across both floats and pick up the weights or jump over a noodle the long way on top of the floats. Another challenge was to jump into an oval formed by the two noodles. It was quite fun to play like that with a delightful girl. Love you Lillers!

The next morning, John’s birthday, we had to say goodbye to Scott and and Lillee, but not before family photos. Stan’s sister Terry had arrived the night before so at least all three kids were there on the morning of John’s birthday.

After they left to drive back to Colorado, Terry had a dental appointment so we dropped her off and John and Stan and I drove around delivering postcards from the hand delivery post office in the Galapagos. When we were in the Galapagos at the post office barrel, our guide took out the pile of postcards and read the destinations. We grabbed one from the Reno area and took 4 from the Vegas area knowing we would be visiting. It turns out the 4 cards were from the same family. At the first house the woman was painting her house and didn’t want her picture taken. She told us that 14 members of her family went on their Galapagos cruise on a small boat called the Darwin. She finally agreed to have her hand in the photo.

At the second one, I was prepared to talk, but no one was home.

We decided it would be better to leave the postcard sticking out under the door mat.

The last two postcards were for the same address. A teenage boy answered the door. When he heard why we were there he was excited and said, “Mom come here, our postcards from the Galapagos!” Mom came to the door and said, “We were just talking about how the people had to go each house to deliver the mail.” She was the sister of the house painter and would not be in the photo either but the teenage son was willing.

John said he enjoyed driving to parts of the town he had not seen before.  He also gave us a tour of the OLLI (Osher Lifelong Learning Institute), where he and Cathy spend a lot of time teaching. We finished our tour just in time to pick up Terry.

Party

That evening we went to Bahama Breeze for John’s 86th birthday party. About 30 of his friends attended. The restaurant was decorated very nicely with tropical art and seat covers with turtles, fish, or palm trees. The first thing Terry and I did was explore the place and take a selfie:

The birthday boy with his son and daughter.
Cathy and John at the conclusion of a very nice party.

Terry drove us to the airport for our 10 pm flight. I had a momentary panic when I couldn’t find my license. I finally found it in a pocket of my purse. Again I was hoping to sail through security without my food. I dutifully removed my wireless keyboard and Boogie Board. But in the arms up scanner they saw my necklace and the clasps on my bra, resulting in invasive pat down again! Our flight was delayed 45 minutes, meaning we arrived in Reno at midnight rather than 11:15. That meant that on Tuesday I was moving very slow. But it was totally worth it for the family love and fun.

Progress 

I have been waiting for the newly approved drug Radicava, which is already available. We finally made some progress – confirmed that I am in the system so the benefits investigation can start, got a call from the infusion supplier which is the same as my food supplier, and got a call from the Nurse Educator who will be working with me for the first 9 months on the drug. It may still be a few weeks before I start, but the ball is finally rolling.

Plans 

We will be traveling up to the total solar eclipse in SW Idaho or SE Oregon on Monday with dear friends. We will stay at my friend Erika’s parents’ house with Erika, Paul, their daughter Maddie, as well as John and Thien. Paul and John work for the company Stan retired from, but in the Sacramento area. We have all become very good friends. I look forward to meeting Erika’s parents and add them to my list of friends. All 3 families have high school or college boys not able to join us.

I am posting this on Friday instead of Monday because it is quite possible that cell phone networks will be overloaded with the hordes of people that flock to Total Eclipses. You can read about it here a week from Monday.

You flew you Lear Jet up to Nova Scotia, to see the total eclipse of the sun – from You’re so Vain by Carly Simon.

A Week of Love, Connection, Connections, and Hope

While Andy was at camp, Stan and I had a busy week of travel. But first, after Andy left on Sunday, we had a lot of visitors. Stan’s friend Marc from work stopped by to visit. Then my neighbor and friend Amanda stopped by for a visit. Thanks Amanda! We are lucky to have your family as neighbors.

Then Stan’s uncle Pete and his wife Mariana, from Corvallis, Oregon, visited. They were in town for the 150th anniversary of the two room old Huffaker School that is now at Bartley Ranch Regional Park. Pete and his sister Sally, Stan’s stepmom, both attended that school when it was at Huffaker Lane and South Virginia. We had a nice Italian dinner at Zozo’s with them.

We had not seen them in many years so it was great to reconnect.

Then Monday morning Stan and I took a 6:30 AM flight to LAX (Los Angeles). We saw this great Lexus while we waiting for our Uber.

“Sorry Dad”

We went for my screening appointment for the C9orf72 gene mutation biomarker study being conducted by Washington University in St. Louis, Missouri. Cedars-Sinai Medical Center in L.A. is the closest location to Reno for me to participate. We arrived at 8 and my appointment was not until 11 so we were able to have breakfast before getting our checked luggage. We Ubered to Cedars-Sinai even though we would be early. We had a nice chat with our Uber driver who was from Bogata, Colombia. His brother is a professional bike racer here in the U.S., so he had just watched the Tour de France like we had. He knew a lot about the successful Colombian riders in the Tour. He also did a good job of convincing us that we should visit Cartagena, Colombia, an old colonial city with many beautiful old buildings. He said Bogata is not safe, but it would be difficult for us at such high elevation too, since Stan and I both have lung issues. I still love Spanish so it was an enticing idea.

At Cedars-Sinai, I signed the consent papers for the study, which will look at the C9orf72 gene mutation for each ALS patient in the study to see if there are differences in the mutation that correlate with the way and the age the disease presents itself. I went through a detailed medical and family history, had my current ALS-FSR measured (a measure of disease progression by loss of functionality), I had blood drawn, and I had a neurological exam. Stan also had to fill out a questionnaire about me.

The gene mutation occurs as a repeat of part of the genetic code. If the repetitions are above a certain number the patient would eventually develop ALS or Frontal Temporal Dementia (FTD) or both if everyone lived to be 150. For those of us that were born with this mutation, it is believed that our bodies are able to overcome the damage the mutation causes until they can’t anymore, and then the disease manifests itself.

This study must be completed prior to clinical testing of antisense gene therapy, which could begin as early as 2018. They said that a spinal fluid test is optional. I volunteered because I want to help advance the science as quickly as possible, for my siblings, cousins, son, and niece and nephews. The spinal tap will be scheduled at a later date.

We were done in time to check into our hotel and walk to a nice lunch. Then Stan took a nap and I went to the pool and did my aqua fitness.

Then the next morning we had breakfast by the pool.

The plan after breakfast was to Uber to Orange County to visit with Lynne and Augie Nieto. Augie is Chairman of the Board of ALS TDI and Lynne is on the board too. We ordered Uber at our hotel and soon got a call from a driver who said she couldn’t get there due to a street closure for tree trimming. She asked us to walk two blocks to the other side of the tree trimming.

So we did. You can see our hotel in the picture – the big building two blocks away. Then Uber called to tell us the driver was at our hotel. Big Uber Fail! They sent another driver, who picked us up and drove us to our destination. She had all types of phone charging cords which was nice. My only complaint was either really bad shocks in the car or really bumpy highway or both, because it was difficult to knit on the hour plus ride. We arrived just after 11.

Lynne and Augie welcomed us to their beautiful house on a cliff over the Pacific Ocean. Augie has had ALS for 12 years. He started the fitness company that made Life Cycles. His Augie’s Quest raises millions for ALS TDI each year. We talked about fundraising we could do in Reno. Augie showed us the trailer for the new documentary about him, as well as a television news segment about him working with Project Walk, a group that works with spinal injury people to help them walk again. Augie is the first ALS patient they have worked with. He was able to walk his daughter down the aisle at her wedding, with some assistance. But even months before, that wasn’t imaginable. He worked out every day very hard to get to do that.

I told Augie that I like his song, Augie Nieto by Five for Fighting. The song ends with a quote from Augie: “It’s not the breaths you take, it’s how you breathe.” Beautiful. They liked my ALS SUCKS t-shirt. I said I like that it has a turtle on it because we are still ourselves inside our shells of ALS bodies.

They had a meeting at noon and we overlapped a bit so we met a lot of other very nice people.

Then we had a very nice spot to wait for our Uber ride back to LAX.

We thought it odd that were lifeguards so high up the cliff, but it turns out they were counselors for the Junior Lifeguard Camp for kids. Parents were coming to pick up their kids.

We arrived at LAX at about 3 PM and our Uber driver told us that we were smart to get there before 3 because traffic later is much heavier. He said that 2 out of 10 rides that he takes to LAX, the passengers miss their flight due to traffic.

This time we were changing planes in Las Vegas. We saw this sign at LAX.

Can someone from visitRenoTahoe.com please explain what demographic group you are targeting? It wasn’t mine, because I don’t get it.

Our flight out of LAX was delayed due to a crew delay. We ended up landing in Vegas when our next flight was due to depart. Tight connection. We rushed to the next gate and the gate attendant said, ‘The Macdonalds?” because we were the last two they were waiting for. He said they would wait for our bags too. Nice #Southwest. Even with this delay we arried in Reno on time.

Then we had two nights and one day at home. It was a day of recovery for me. Stan didn’t get to rest. He met a friend for breakfast, went to wound care (wounds on his legs don’t heal due to Prednisone), and had lunch with another friend. He rested in the afternoon. I went to 5:30 pm Aqua Fitness. It was a great class – we kneeled, sat, and stood on boards which is a great core workout.

On Thursday we drove to San Francisco to meet our friends Barb and Barry from Ottawa, Canada. Barb had visited us in Reno last fall. Barb was in San Francisco for a geriatic pharmaceutical convention which ended the day before. We checked into the Bed and Breakfast and then met Barb and Barry at the cocktails and hordeurves downstairs.

This was the first time we met Barry. We all had a great time. That night we ate at a Morroccan restaurant called Mourad that was very nice and had great food  (it looked and smelled great to me).

The beautiful wood at the entrance.

Then on Friday, we did a segway tour of the city. Barb said they had always made fun of the segway tourists, but secretly they wanted to try it!

We had great training, first right outside the segway tour place and then in a parking lot.

Stan was the first to try. That is our great Irish tour guide behind him.

We were in a group of 8, the 4 of us and a family of four with two teenagers. We all picked it up quickly. The change of balance is all in your feet so it seemed similar to regular downhill skiing. We stopped at a museum with arcade games from a hundred years ago and newer, along with the first photo op.

Here we are with Alcatraz in the background.

Then we went to the municipal pier, aka the Segway raceway. Stan really enjoyed this part.

Barb with Coit Tower in the background

We then went to the public parking lot by St. Francis Yacht Club where good pictures of the Golden Gate Bridge could be taken. It was partially fog covered.

The next stop was the Palace of Fine Arts. I had driven by countless times but never stopped. It was so beautiful.

And then, because our group all caught on quickly, we got to go up to the top of Lombard Street and ride down. This was a highlight for me – both the steep climb up and the winding ride down past all the beautiful houses and flowers. We were instructed to refer this as “chocolate” because not all the groups that left with us got to do that.

After the Segway Tour, we had an In N Out Burger lunch so Barb and Barry could experience the California icon. Then Stan and I headed back to the Bed and Breakfast to rest and Barb and Barry went to the Exploratorium.

That night we met Jen from ALS TDI and her husband Jimmy at a Thai restuarant. We had a lot of laughs. What a fun group.

The next morning, after a final breakfast together, we had to say goodbye. We were headed back to Reno and Barb and Barry planned to take the ferry to Sausalito and walk back over the Golden Gate Bridge. They would fly to back to Canada the next day.

My eyes are closed, oh well. It was a nice parting breakfast discussion, including when we could possibly meet again.

We drove back to Reno and got there just in time for Stan’s wound care appointment. Another close connection. After that we went home and saw Andy who had arrived home from camp. As if we hadn’t already done enough this week we went out to Animal Ark for their Cheetah Dash. Animal Ark is an animal refuge that takes injured or abused wild animals. A few times a year they invite people out to watch the cheetahs run. They have devised a very fast pulley system to pull the lure that the cheetahs chase. The fastest one we saw went 50 mph.

The best thing to come home to was our son.

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 
Rod
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.
Anita
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
Dislocation
Separation, condemnation…..
……desolation
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.


Traveling to some of my Happy Places 

Andy’s school year officially ended on June 13 when he played viola with his high school Chamber Orchestra at graduation. We wasted no time getting out of town! On the 14th we drove out to Miles End Lodge in Kingston in central NV for a two night stay. We brought the side by side and dirt bikes. Our friends Alice and Chuck and Steve and their friend Gary were out there too with dirt bikes for the guys. So Alice and I had fun taking turns driving the side by side up Kingston Canyon and down the other side. We had some fun water crossings.

We loved seeing everything so green after the abundant snow year.

Andy and Stan accompanied us on dirt bikes.

our group: Gary, Chuck, Alice, Ann, John, Steve, Stan, Andy

I love that place so much that we will be back in two weeks.

Then we left the next day in our motorhome for a trip to Portland, Oregon to visit my sister Catherine and her family. Andy and his cousin Sam would be taking a sailing class on the Wiillamate River. It was two days of long drives with beautiful views of snow covered volcanoes, including Mt. Shasta from the south, east, and  north! We camped the first night at Sunset Campground at Lake of the Woods.

It was the only reservation I could find on short notice and it worked out well. It was a great campground with a beautiful lake and a beautiful snow covered volcano, plus it was 45 minutes from the only entrance to Crater Lake National Park that was open because of snow removal continuing on most of the roads in the park. So after a lazy Father’s Day morning at the campground, we drove to the south entrance of Crater Lake National Park. There was a long line of vehicles waiting to turn in from both directions. We finally made it up to a ranger taking money standing in the road before the pay station. We asked if it would be reasonable to drive our motor home up to the rim with our tow vehicle and he said, “No problem, there is oversize vehicle parking up there.” So we drove up to the very crowded Rim Village – lunch time on Father’s Day with perfect weather. There were cars parked everywhere, including in all of the RV/Bus sites. So we waited for someone to leave. The problem was with 6 RV/bus sites that meant 12 cars and we would need to have two in the same site leave at the same time. When one car left I got out to save the place. Then another car left in another spot. So now I was saving two places. Then another motorhome arrived towing a Jeep. The couple was from California and they joined us in the effort to keep cars out of the RV sites. I had my Boogie Board and it was perfect!

I blocked cars from turning into the area and felt very powerful with my Boogie Board! There was one car I blocked from turning into an empty spot and they drove around and started to turn into an empty spot on the other side so I ran over there again with my sign (and the handkerchief in my mouth!) and held up the sign again. There were also plenty of people from other countries who looked like they didn’t know what my sign said so I had to point to a motorhome. It was actually kind of fun and definitely camaraderie with the other motorhome people. A third motor home had joined us in our effort. Even after we finally got parked I felt like I should stay out there all afternoon enforcing, but Stan pointed out that it was no longer our battle. He was right of course. Stan and Andy had sandwiches during the hour this took. But I still had to eat and I got to have lunch with a great view.

The lake was a mirror, and the snow was beautiful. More family photos:

It was worth the wait for such beauty. Andy also had fun shoe skiing down from the Rim Lodge roof.

After that we continued to Portland, arriving around 9 P.M. Because it was late, we decided to meet my sister and nephew at the sailing class at 9 A.M. the next day. We got all checked into our RV Park and got to bed.

On Monday we got Andy to the Willamette Sailing Club at 9:05 A.M. becasue of traffic. But he only missed a little bit of the Safety Introduction and he had done this camp before. Andy is sailing with the teens in Lasers and Sam is with the younger kids in Optis. We stayed through their swim tests. 

They had to don their life jackets in the water, but ony got them after telling a joke or a riddle.

Then my sister Cath, Stan and I went to a nearby Starbucks to chat. We looked up at the bulletin board and at first glance  it looled like it said Welcome to Stan Macdonald.

Actually it says Welcome to Starbucks on Macadam.

There is a climbing gym right in the same area so Andy and Sam spent parts of the afternoons climbling.

We had a nice bbq dinner on the new deck at Cathy and Rick’s house. This was in the waning twilight between 9 and 10 P.M.

On Tuesday Stan and I had a lazy morning, then met Cath and the boys for a Taco lunch then more climbing.  On Tuesday night we went to dinner at their Jewish Community Center – it smelled so good.

Cath, Rick, Sam, and Andy walked the few hilly blocks from their home to the center, while Stan and I drove.

Wednesday brought more of the same. The boys had plenty of wind for sailing and got to cover quite a bit of that lovely part of the Willamette River with bridges and an island. And then more climbing gym. On Wednesday night we got together with Stan’s cousins David and Dana and their families at a Cambodian Sports Bar. It was so much fun, and wonderful to connect with family we hadn’t seen in a long time.Almost the whole group, missing only Dana.

On Thursday, Rick, who is an Emergency Room doctor, was off work. I asked if it would be possible to go to Mt. St. Helens in Washington, about an hour and a half north of Portland. It turns out to be one of their favorite places. Could we do it in half a day, after sailing ended at noon? We decided we could because it was one of the longest daylight days of our year.

So the geology-loving part of me was fulfilled. I had been in Geology 101 at University of Illinois in May of 1980 when the big eruption occurred. It was REALLY cool at the time to have a professor explain the geology of an active volcano on the west coast of my own country. And now I got to see it!

It was another perfect weather day. We stopped at an overlook on the way up, and there was a guy there with a spotting scope focused on three elk.There are three elk on the right side of this photo on the little hill, but without the spotting scope we would not have known.

The wildflowers were beautiful.

We made it to the Johnston Observatory just in time for the last movie of the day.

 Cousins after the movie.

We attended the last ranger talk of the day, standing outside. It was time for me to do my meds, including grinding them. My sister was so kind that she got me a wheelchair to sit in during the talk so I could get meds done. The talk was given by a Forest Service Intern from Germany and his presentation was superb.No the man in the background is not standing on the table!

Then we walked up a trail that went up and around the hill on the left side of the photo.

There was a memorial for all the people who died on that Sunday morning in May 1980 when the volcano erupted.

This day ended with dinner at Lucky Dragon Chinese restaurant on the way back to Oregon. Rick’s fortune cookie said “You have great patience” which is true and he also has great patients (veterans). Stan’s fortune said “You will soon meet an old friend” which also was true.

On Friday I met my sister at the Hoyt Arboretum. She likes to hike there as often as she can. I met her after her hike and we found a shaded picnic table and sat and had a sisterly chat. It was nice to see that part of Portland. Then Cath showed me around downtown Portland, including this actual city park.

On Friday night, we went to a play. It was called The Pianist of Williston Lane and was a beautiful yet sad story of a woman saved by the kindertransport during the World War II holocaust which moved Jewish children to England, which is Rick’s mother’s story too. And after the play,  Ben and Jerry’s Ice Cream.

Then on Saturday, the day we had to leave, Cathy, Rick, and Sam came to our motorhome for brunch.

Then we headed south on I-5 and went to visit old friends in Trail, Oregon. 

Linda and David retired from Desert Research Institute 14 years ago and moved to Oregon and are now living on a beautiful farm.

Stan and David talked for hours about their shared technological and other interests. Andy helped Linda build a dam on the creek to make a swimming hole for their dogs. Linda and I talked about knitting and yarns. She spins her own yarn. They were wonderful hosts, and it was wonderful to catch up with old friends.

On the way home today we will meet another old friend in Klamath Falls.

These have been great trips of love and connection.

Beautiful Camping then the Best Laid Plans….

The publishing delay has ended. My blog is back!

On Memorial Day weekend we camped on our friends’ property in Plumas County. After so much snow this winter it was very green with lots of wildflowers.It was a relaxing weekend, with fun activities thrown in.Andy and Stan rode dirt bikes.

Jim and Peggie rode mountain bikes.Jim played music.And so did Steve and Gary.

Alice, our host, with Timmy 

Chuck, also host relaxing in camp. Many of us got a lot of reading done too.

Our motor home in the early morning light.

A pond that appeared after the big snow winter was fun for throwing rocks into.Peggie and I took a hike to see the wildflowers and all the green. We saw a couple of snow flowers.

It was very green, greener than most years.

Then we saw Andy riding by,followed by Stan.

Some of the beauty we saw.

We also hung out at Steve and Dianne’s cabin down the road.

Ian watching inquisitive Adi, his son.

Dianne with her grandson, Adi.

Ian playing his dad’s guitar, with dad Steve at his side.

We even got to have a fire, the first in many years. It was finally wet enough that the fire wasn’t going to risk starting a wild fire. My camera obviously focused on the flame.

All in all a weekend with good friends, good food (as I was told), and good relaxing and fun.

In the week that followed I got confirmation that I have the C9orf72 gene mutation that causes ALS – no surprise, considering that my mom had been confirmed to have it too. This now allows me to participate in research specifically for this gene mutation. This is what I feel I can do for my son and my niece and nephews and cousins. The researchers want to first see what the different forms of the mutation do to the outcome of the disease. Some people get ALS, some people get Frontal Temporal Dementia (FTD), and some people get both. There are also people with the mutation that get no disease at all. My family has a long history of dementia also. Getting the genetic confirmation has put into motion my enrollment in two studies, one in Los Angeles and one in San Francisco. It is exciting to be involved in research that could lead to a cure for this particular genetic form of the disease. The gene is dominant, meaning that offspring have 50% chance of inheriting the mutated gene.

On Wednesday, Andy had his Spring Orchestra Concert at school.Andy with his proud parents after the concert.

On Thursday, Andy stayed home from school, after throwing up in the middle of the night and most of the day. It was unfortunate timing – the week before final exams. He did go to school Friday, and Stan and I drove to San Francisco.

On Friday, I had my second botox injections in my parietal saliva glands. I had noticed the effect drop off in the last few weeks. The first dose did let me cut the dose of the saliva reducing medicine in half. This time they did a higher dose and both upper and lower part of the glands. As I write this I am already noticing that I can cut my dose of the medicine even more. 

Next came my ALS clinic visit. I first met with the speech therapist. She gave me some exercises to keep my TMJ muscles flexible so I can keep my mouth closed without effort. Then I met with nutrition and they were very happy that I am maintining my weight. I met with the respiratory therapist and she shared the results of my overnight pulse ox test, which were disconcerting. The results show that I am desatting (blood oxygen levels getting dangerously low) several times while sleeping, so much so that I am not getting any REM sleep. I do wake up a lot. No wonder I have had so much fatigue. I use a bipap, and this resulted in an order to increase my bipap pressures. We also found that I have vocal cord involvement impeding my forced vital capacity breathing tests. Air does not flow smoothly when I am making an effort. I met with Physical Therapy and my neurologist, this time Dr. Catherine Lomen-Hoerth, the director of the ALS clinic. There is no sign of progression to my limbs yet. Dr. Lomen-Hoerth hooked me up with the UCSF folks researching the C9orf72 gene mutation.

All in all, it was a good clinic visit. My disease is progressing, and I am uncomfortable at times (needing cough assist or dealing with saliva issues) but I still feel incredibly lucky to be able to self care this long.

We finished at the clinic at about 5 P.M. and we walked to dinner about 5 blocks to a brew pub called Social. We had big plans for the weekend ahead. Our son Andy had driven to the Sacramento area after school to our friends the Peters’ house. Then he rode with them to San Jose, where we met them about 8 pm. Andy was running in the San Jose Giants race at 7:30 Saturday morning. Erika was going to run too, but couldn’t due to injury. Then on Saturday afternoon we were going to Oakland to watch the A’s vs Washington Nationals baseball game, and on Sunday the Young Faces of ALS National Corntoss challenge in Piedmont – Andy and Stan were a team, as were David and Paul. 

Saturday morning arrived with Stan throwing up at 5 am. Erika, along with her daughter Maddie and Maddie’s cousin Jacqueline, took Andy to the San Jose Giants stadium for the race. I stayed at the hotel to help Stan. I also had to go to CVS to get some medications he forgot to bring. Erika texted photos (thanks girlfriend!)

Andy, ready to race 5 miles.

After the 5 mile race with his medal and Madison Bumgarner bobblehead. He got second in his age group. Not bad after being sick two days before!

Then Andy went to the A’s game with the Peters and Paul’s dad. I stayed at the hotel and relaxed, with the A’s game on TV on mute, listening to Stan talk like a pirate he was so miserable. (Lots of Argh Matey and You Scurvy Dog, as you can imagine.) I was reading a book about Captain Cook so the language fit right in. He threw up until noon and had diarrhea too. The lucky ones at the baseball game saw an exciting one with lots of home runs.

Stan was not getting better so I texted our friend Peggie, who is a cardiac nurse practitioner. She recommended the emergency room for fluids. I could not convince him to get up. When everyone got back from the baseball game, I asked Paul to come help. He was able to help Stan get dressed and out of bed, and the hotel brought a wheelchair. We left the kids at the pool, and drove to the closest emergency room.The kids also had permission to order room service dinner and watch a movie.

We went to Santa Clara Valley Hospital and there was construction at the ER entrance.Paul had to go in and get a wheelchair for Stan.

The Emergency Room in San Jose was an interesting place to be on a Saturday evening. It was really busy. Stan was triaged and then we waited. They took him for an x ray and then he had an EKG. Then more waiting. He became delerious, with his eyes not focusing and trouble keeping them open. Paul talked to the Physician’s Assistant in charge of ER intake, saying that we were more concerned about him now than we were when we came in. This bumped him up in triage. He was brought to a cubby behind the checkin and they took his vitals. I wrote on my boogie board, “He needs fluids STAT” and showed it to the PA and he responded right away. An IV was started and they gave him anti nausea meds. He was finally moved to an ER room. At 1:30 in the morning they decided to admit him. I texted Erika, and the angel she is, she came and got me.

I can’t thank Paul and Erika enough. Without their help it would have been a nightmare. On Sunday morning Stan was still in the ER. We were in the San Jose Hilton and Apple’s Developers Conference was starting the next day at the convention center connected to the hotel, so there was no way we could extend our stay. Erika took Andy to see Stan, while I stayed back at the hotel and packed everything up. I checked out and gave Andy’s bag to Paul who was hanging out with the kids in their hotel room. Andy would ride back to Sacramento with them, so he could drive home for school the next day. Andy and Erika had returned to the hotel, so Andy rode back to the hospital with me. Erika would pick him up there. By now Stan had been moved to a room. I was glad Andy was with me because it was a maze to find his room. 

We had to bow out of the Corntoss Challenge. I want to thank all of our donors, and I am sorry we could not participate.

  • Kathryn Maple Whitten
  • Joyce and Vince Zodiaco
  • Sam and Karen Hancock
  • Haley Mruz and Drew Sheehy
  • Steve and Dianne Lintz
  • Our biggest challengers (the Peters) 
  • The Silvola’s (my second cousin’s family)
  • Our Connecticut cousins
  • Barb Farrell
  • John and Anita Saunders
  • Pete and Jenna Saunders
  • Tim and Joannie Montagne
  • Alice, Chuck and Rita Hilsabeck
  • Marc Corrado

You all helped us raise over $1000 for ALS TDI, the nonprofit company that has a very promising ALS drug in the pipeline – truly awesome friends and family.

When I got in to see Stan, they were talking about releasing him. Erika texted that she was taking the kids to lunch and she would pick up Andy. Then I sat with Stan for the long wait for discharge. And a long wait it was. Andy went to a park after lunch.

We decided that Andy should head back to Sacramento with the Peters, so he could be sure to get home for school the next day. I texted my neighbor Hella, asking if Andy could stay with them (he doesn’t like to stay alone because he sleeps through his alarm). Hella’s reply was “Sure!!” It’s a good thing we made those arrangements because Stan was not released until 7 pm. I was exhausted from not enough sleep and Stan was not feeeling that great so we only drove a half hour and spent the night in Pleasanton. Then we drove home Monday – still a rather difficult drive because Stan still felt ill and I was too sleepy to help. But we made it home safely, arriving just after Andy got home from school.

Andy finished school this week, and after four days of finals, a very busy weekend before, and illness, he pulled off the grades he had set as his goal – all A’s and B’s. We are very proud.

This week we also got a new Polaris side by side so I won’t have to stay home when the boys go out on their dirtbikes.

Busy busy busy and not all as planned but it worked out in the end. Lots of love, connection and hope. And I did remember a dream last night so I am having REM sleep. And best of all, I avoided the stomach virus!

Alphabet Soup (the last two weeks)

 

 Clipart from http://www.shutterstock.com
    • A is for Aria, my friend with advanced cancer. We had a nice visit and were able to give each other resources and realized that we both think alike because our days are numbered. It is a wonderful friendship.
    • B is for bloodwork which I tried to get done for my genetic testing on Wednesday but I was too late to have the sample shipped that day. Now I will go back Tuesday, first thing in the morning. It can’t be shipped later than Wednesday so it can be processed before the weekend.
    • C is for crash, as in dirt bike. Stan went out riding with his friend Chuck and crashed and landed on his head. He was worried about his middle back. We were at the ER until 11:30 P.M. on a school night. The CT scan showed no breaks and the doc said, “You bounced good.” Thank you helmet and body armor.
    • D is for dentist appointment at which I found out I have more plaque and tartar because I don’t chew anymore. So my dental cleanings will take longer now.
    • E is for Easter brunch at Rapscallion with my dad and step mom, Anita, and my step brother Brian. Stan’s feet were too sore from all the walking the day before (See and ) so he was not able to join us.
    • F is for Fest, as in uke fest at the Nugget in Sparks. It has become an annual event for us because Stan’s mother and aunt both play ukulele and they stay at the Nugget for this fest each year. Our tradition is to have lunch at noon on Saturday at the Oyster Bar, then go wander around the uke fest.
       Stan and his mom toasting with water.
       Andy with his Grandma Sharon
       Our good friends Chuck and Alice joined us this year. Chuck is a uke player and a big uke fan.

      Sharon trying out a pretty ukulele at the Uke Fest

    • G is for G tube: my awesome nurse practitioner supervised Stan changing my feeding tube so now we will be able to do it at home every three months.
    • H is for Honda airbag recall.Our Honda Ridgeline had to go to the dealer for recall work on the airbags, meaning Andy had to ride the bus to and from school for a couple of days.
    • I is for invitations sent out for upcoming events.
    • J is for journey, as in Captain Cook’s explorations, which I am reading about in an awesome book called Blue Latitudes.
    • K is for K, as in potassium, which Stan found out from his bloodwork in the ER that his level was perilously low, so now he is on a higher potassium supplement and he is making an effort to eat more potassium rich food.
    • L is for license, as in driver’s license, or Real ID, which will be required for domestic flights in about three years. My driver’s license was due to expire in June but I got it renewed to a Real ID this week.
    • M is for music, as in piano which I play most days, and as in Bruce Springsteen’s memoir Born to Run, which I am also reading.
    • N is for new shoes for aqua fitness which will support my feet better.
    • O is for objects decluttered, which I continue to do by filling all my monthly food supply boxes with giveaways and donating them to the Big Brothers and Big Sisters thrift store.
    • P is for Peters, our good friends who came out to cheer Andy on  (See R).We went out for lunch with them too.
    • Q is for Quiet, which I often long for and sometimes find.
    • R is for Race, as in Andy’s first 10K (6.2 miles) running race. He did the San Francisco Giants Sacramento Race at the Sacramento River Cats stadium  (SF Giants AAA team).
       The San Francisco Giants Easter Bunny before the start
       Our view of the finish line 
       Andy’s finishing kick, on the right with the red socks. He managed to catch the guy in black right at the finish line. The other runners in the photo were finishing the 5K race.
       The runner after his great race.
       Andy with his post race runners’ snacks and his buddies Maddie and David.

       After the race in the parking lot with my dear friend Erika

       After the race in the parking lot with my wonderful husband 
    • S is for sloth, as in my 16-year-old son who will stop mid action and stare into space, especially in the morning.I called him sloth last Monday morning when he froze, as I regularly do. Then I told him we could go to the Sacramento Zoo after his race on Saturday to see the sloth (See Z). Stan, who was reading the morning comics, said “Come look at Zits! (a comic strip about a teenage boy)” and this was the comic: (!)
    • T is for taxes, due April 18, so I got them all ready to mail on Tuesday.
    • U is for Urban Roots, our local organization that educates children on where their food comes from. They teach planting, harvesting, and preparing food that is grown. They donated $500 to the Meg Saunders Macdonald Community Garden, and I was asked to accept the check.

       With Tammy Freeman, the force behind the creation of the garden, and some early spring onions.
    • V is for vicarious adventure from reading a blog about an Australian woman attempting to circumnavigate Antarctica solo, a very exciting read. https://Lisablairsailstheworld.com/blog
    • W is for Wellness and Art, a monthly class for cancer patients at the Nevada Museum of Art, which Aria told me about, and which I tried. They didn’t send me away because I don’t have cancer, which is nice because as Aria says, “We all think the same.” The class starts and ends with mindfulness guidance. We decorated eggs using bleeding tissue paper and water or watered down Elmer’s glue.
       The torn tissue paper colors we had to work with 

       My decorated eggs, three done with water and tissue paper peeled off, and one made watered down Elmer’s glue and the tissue paper left on. All were covered with decoupage to make them shiny.
    • X is for Xylitol, an artificial sweetener that attacks the microbes on your teeth and helps prevent cavities. It also promotes saliva production so I can’t handle much of it anymore, but I do use Theramints (by 3M) to rub on the back of my tongue after burning reflux.
    • Y is for Yard Work, as in pruned my rosebush, which was given to me by my step mom,  Anita when my daughter Anna was born too early and died. I promise a photo of its beautiful roses when it blooms.
    • Z is for Zoo where we first went to see the sloth. 
 My son, the sloth, and his animal counterpart 😃

And then we covered the rest of the zoo too.

A,B,C, as easy as 1,2,3, two weeks have passed.

Surf’s up, our “grandson” is wonderful, Hawaii’s the life for me

Having booked our trip only two weeks before (after a much needed phone call between Jonika and Andy) we flew to Hawaii on Friday March 24, for the second half of Andy’s spring break. Our niece, Jonika, who lived with us from age 11 to 15, now lives in Kona on the Big Island with her man Chris and her beautiful 8 month old son Oliver (our “grandson”). Jonika and Andy are very close despite the 14 years between them.

Just like on the flight to Panama for our Galapagos trip, I threw up after “eating”my normal two can dinner through my g tube on the flight from Los Angeles to Kona. This time I made it to the bathroom. I think it’s caused by inactivity and maybe the anti diarrhea pills I take prophactily when I fly. I guess I have finally learned I will have to pace my eating differently when flying.

The time change to Hawaii this time of year is 3 hours. We arrived at 7:30 pm and picked up our rental car, then Jonika and Ollie met us at the condo. By the time I tried to sleep I had been up about 21 hours. But when I laid down, I felt like I was going to choke on my tongue. I got up and put some of my saliva reducing medication in my grinder and took that in through my tube. I Googled to see if this was a symptom of bulbar ALS and found that it can be a symptom of Gastrointestinal Reflux. Since my throat muscles don’t work well, some of my acidic vomit stays in my esophagus after vomiting, burning the whole time. So I apparently had a swollen esophagus. That helped me get to sleep but I was low energy the next day.

Life in Hawaii is fairly low energy so all was good. We went to Jonika’s house and hung out with cute little Ollie.

Lunch was huli chicken salad. Chris was able to come home from work for lunch. Then we went to a grassy beach park that we love.

Nakey keiki with his mama and auntie

Andy had fun swimming with goggles looking at colorful fish and climbing into lava tide pools to soak. We tried to go to Costco (rather a long drive from where we were staying) to stock up, but they had already closed. By the time we were back and ready for dinner, Jonika had already put Ollie to bed. So just Stan, Andy, and I went went to the pizza place in the shopping center nearby.

Andy kept up with his training plan for his April 15 10K and enjoyed his runs along Ali’i Drive. I was envious.

On Sunday Jonika and Ollie came over  (Chris was working again) and we swam in the pool across the parking lot. Jonika and Stan had made some poke (fresh ahi tuna with lime, soy sauce, sesame oil, and avocado) which I understand was wonderful. We had lunch at the pool.

After the pool Andy took me to see the Ocean Pool and the awesome waves on the cliffs.

Dreaming about his first surfing lesson the next day. We heard there were high surf warnings for Sunday afternoon and Monday morning. We were lucky to see the cool waves in these conditions.

Then we finally did our Costco run. On Sunday night we celebrated Jonika’s birthday which was earlier in March. We went to a lovely Italian restaurant on the water called Mi’s. I was not feeling well because of saliva in my throat causing a gag reflex. I did manage to ingest my 2 can dinner. I went to the railing and looked at the ocean for awhile (memories of the night of New Years Day in the Galapagos, not feeling well, watching the ocean). My anti saliva medication finally kicked in by dessert. I slept better that night.

Monday morning Andy had his first surfing lesson. It was delayed two hours so the instructor could catch the big waves. Jonika had gone to work but Chris was off and we had time to go swim in the ocean pool and watch the big waves. Chris had his GoPro and got a video of Stan scaring Ollie in the pool that reminded Jonika and me of Stan scaring us on a kayak trip to the Cook Monument on our Big Island fall break trip when Jonika was 11.

In the surf lesson Andy picked it up right away  (all that skateboarding paid off).

He was standing up during most of the lesson. Chris, Ollie’s dad, had a surfing lesson too. Stan and I babysat on the beach and let Ollie get all sandy, much to Jonika’s chagrin (she hates sand).

Daddy with sandy Ollie

We ate dinner at Rebel Kitchen and while Andy was using my phone to video Ollie, he happened to catch Jonika’s rant about the sand perfectly:  “So this man,” (pointing at Chris), “hands me my beautiful baby boy and I notice there is sand in his nose, and in his ears! So I say ok we’re going to take a bath. Then I notice it’s even in his belly button!” We love you Jonika!

I got to hold Ollie after I was done “eating”.

Andy loved surfing so much and he loves Ollie so much. So first thing Tuesday morning I booked a visit to University of Hawaii, Hilo for Wednesday afternoon, since we had planned to visit the Hawaii Volcano National Park on Wednesday and we would be close to Hilo. I would love to have Andy go there because he would have loving family two hours away. 

On Tuesday we had a lazy morning and then we got to hang with Ollie and Chris for lunch at our condo. Then Chris left for work and we played with Ollie. Then Jonika came over after work but left for a meeting so we babysat again. No complaints. We love him!

Who wouldn’t love this kid?

How I used to talk:

How I talk now:

I wish this was how I talk but it really is mostly vowels that come out now.

Ollie loves me because we speak the same language. He says,  A, and I say, A. And I can match everything he says perfectly, which he finds fascinating. 

Andy and I walked down to the closest beach to check it out. 

He really wanted to boogie board but it was high tide with big waves on a rocky steep beach. I explained the physics of undertow and he decided not to try it.

Tuesday dinner was steak and veggie stir fry made by Stan and Jonika at our condo. Chris joined us after work.

On Wednesday we got up and out by 7:15 to drive up to Hawaii Volcanos National Park. First we visited steam vents.

Kīlauea’s steaming crater in the caldera

Then we had lunch at the Volcano House. It was raining then, so we timed it right. Andy tried the Hawaii Sampler plate.

The caldera and steaming crater through the rain from our lunch table. 
Beautiful Koa wood oars
Andy, sitting in a $7000 Koa wood rocking chair in the Volcano House.

After lunch we went through Thurston’s Lava tube.

Then we visited Hilo and the University of Hawaii, Hilo.

We had a lovely tour from a senior soccer player, who truly loves her school.

And there was a lot to love – 15 students per class, all professor taught classes, mostly hands on learning (example: Statistics is taught on a boat out at sea.) The small school is like a family. There were beautiful trees,

Some of the dorms

and the only Olympic sized pool on the island.

They even have massage week the week before finals! Andy was partially sold when we left.

The 4 boys at dinner on Wednesday.

On Thursday we went on a snorkel trip on the Body Glove boat. Jonika and Chris met while working at Body Glove.

They announced a scuba diving opportunity and Andy was eager to try.

He loved it and scuba diving further cemented the possibility of college in Hilo.  Stan, Jonika, and I snorkeled and I was happy because I did not swallow any sea water (two of my tries in the Galapagos resulted in big gulps which scared me). The nose purge mask and splash preventer on the snorkel helped. We saw lots colorful fish and a coral arch. Andy saw eels and starfish on his dive. Andy also said he wants to work on the Body Glove boat so I made sure that he saw how hard they worked.

Andy and Jonika enjoyed the slide and Jonika jumped off the top deck after waiting in line with all the little kids (she had never done that in the four years she worked on the boat). Andy had borrowed a rash guard from Chris and it was the uniform of the crew so they kept teasing him by trying to put him to work.

Thursday afternoon Jonika’s friend Hope came over. Stan and Andy and Hope and Jonika went to the ocean pool and I happily volunteered to babysit.

Stan the fan man, as we called him, in his favorite place in front of the fan (he does not do humidity well)

Thursday dinner was grilled steak and potatoes and asperaragus at our condo with taro for Ollie.

On Friday morning we had to pack up and be out of our condo by 11 a.m., although our flight was not until 10:30 p.m. We hung out at Jonika’s again.

We had lunch with Chris at Annie’s, one of my favorite places because of their breezy lanai, and then had to say goodbye to him when he went to work. Back at Jonika’s, Andy went for a run around the coffee farm and up the steep road that Jonika lives on. Then he wanted more beach time and Stan and Jonika were game and I again happily agreed to babysit.

Ollie loves Roxy’s bed, just like Andy used to love his Grandpa’s dog beds.

It was a wonderful week of love, connection, and hope. It ended too soon, but this wall hanging in Jonika’s house says it all:

We counted really high this week!

Galapagos to Celebrate our 25th anniversary Part 3

​Thursday morning we were at Bartolome` Islet and departed early (6:15 am) for a hike to the top of the Islet. Jim, Peggie, and I all made the trek.

This guy swam by before we loaded the zodiacs
The entire walk was on boardwalk and stairs. I was huffing and puffing on the climbs but recovered well when we took breaks.
Our guide Juan Carlos
Beautiful cacti on this islet
Later that morning we snorkeled around the pinnacle below
My early morning hiking buddies

My sister Beth had recommended the movie Master and Commander starring Russell Crowe because it ends in the Galapagos. We watched it the night before we left Reno. It was filmed  on this island. Juan Carlos said he was working for a different company when he saw them filming – about 70 people he said: cameras, makeup, retake after retake. The ships in the movie were filmed in Baja, California. I enjoyed the movie even though it was about war between the English and French in the 1800’s.

We snorkeled out to the pinnacle

My favorite thing I saw on this snorkel trip was a brilliant blue star fish.

After snorkeling I went on a glass bottom boat ride.

A close up of part of the pinnacle

There were a lot of kids on the boat. I was impressed by how much they learned this week. They could identify everything! But the highlight for me was above the water.

Galapagos penguins! Jim and Peggie got far enough around the pinnacle snorkeling that they saw these guys swimming looking for those little silver fish.

The day before the kids had received zodiac driving lessons.

This young zodiac captain was very professional!

Early afternoon I got some photo critique from Antonio. Many of my photos from the giant lizard walk were over exposed. The phone’s camera guesses what the exposure setting should be and it is not always correct. And some of my photos should have been close ups.  We later discovered the pro mode on my S7 where I can adjust exposure among other things. Also post processing is easy on my phone.

At 5 pm I went on a zodiac ride to Sombrero Chino  (ChineseHat).

I love pelicans!

A safe place for a nap

Headed back to our ship

That night we had a barbecue dinner on deck.

They turned off the lights at one point and a naturalist pointed out features of the night sky with a green laser.

This map shows our progress to this point. Overnight we would cross the equator to visit a small caldera.

Then Friday, our last full day. Our ship had crossed the equator over night and was in a small caldera called Genovesa.

Many photographers were up for the sunrise

Friday’s events on the bulletin board. I like the cartoon. All creatures think “Eat, survive, reproduce” and only humans think “What’s it all about?”

Stan and I went to Darwin Bay Beach first. We were not able to do the lava part of the hike because of high tide. But birds were abundant.

Jason was our naturalist on this hike

When we got back to the ship, Jim and Peggie who had gone on the other hike said it was very hot. So we decided to skip it in the afternoon. We did go on the deep water snorkeling trip. I thought it would  be cool to snorkel in a caldera. A highlight was a turtle swimming down below us. Stan noticed that I had water in my snorkel and when he tried to help me clear it I swallowed sea water again. I immediately waved my arm and the zodiac picked me up. Stan, Peggie, and Jim got out then too. There was an adventurous older couple with us. I had sat next to the man on the zodiac coming back from the beach another day and I asked him how it was using charades and when I pointed to my fins he said, “I couldn’t use them.”  He was obviously disappointed. When we jumped in the water from the zodiac he immediately wanted to get out. Then his wife went snorkeling with Stan and me. I was very impressed by their courage. We found we had a love for skiing in common and that’s what we talked about all the way back to the ship. 

We spent some time packing up. We discovered that I only had enough food to last through the next day (Saturday). This caused some alarm since I wouldn’t be home until Monday. I asked the doctor if we would be able to find Ensure in Guayacil. She said yes and told me to ask at the hotel. 

We had the opportunity to share our 10 favorite photos with Antonio and he would put together a slideshow for our last night on the boat. It was difficult to upload from my phone. We had to insert an SD card and put the photos on it. My McGyver husband used my earring to open my phone. I brought the SD card up to Antonio in the library where he was uploading. He looked through my photos and actually picked 18 of them. That made me feel so good.

For our last Galapagos sunset we were up on deck and it was beautiful. 

One of my photos in the slideshow

After dinner we, along with many other guests, went to the bridge for our 2nd crossing of the equator. It was like a new year’s eve count down as we watched the latitude count down on the GPS meter.

Then the next day we reluctantly disembarked. 

The youngest guest, Hazel, didn’t want to leave either

We had a nice flight to Guayaquil and checked into our hotel. It was midafternoon so we had time to go out and look for food for me. We asked the concierge where we could find liquid nutrition. He told us there was a pharmacy three blocks away and it would be fine for us to walk. I got one of my favorite photos on this walk. 

There were plenty of liquid nutrition choices  on the shelves at the pharmacy but we had to ask the pharmacist for 1.5 calories per ml and he had two four packs in back. Perfect! 

We had dinner at the hotel’s steak house again.  On Sunday, we had a relaxing morning with a noon shuttle to the airport .

Jim and Peggie walking around, waiting for our flight to Panama City
Pretty coffee cups in a store window

On our flight to Panama City, we sat with a young  woman  in her twenties who told us she was from Guayacil but now lives in Toronto. She had never been to the Galapagos so I showed her some of my pictures, which she loved. 

In Panama City we only had about 45 minutes before our flight to Las Vegas. I hurried to the gate so I would have time to eat lunch (we were trying to get back on Pacific time). Of course it was almost the farthest gate. Even though we had already gone through security everyone flying to the United States had to go through security at the gate, shoes off and all. The gate area was way too small for the number of passengers.  I was lucky to find a guitar leaning on a chair. I asked it’s owner if I could use that chair and he graciously moved his guitar. He was a veterinary student returning from a veterinary mission to Nicaragua. We had a nice chat. I was able to finish my lunch.  Stan, Peggie, and Jim all ate outside the gate and they made it to the gate on time. 

On the flight to Vegas we sat next to a nice woman from Peru who now lives in Vegas. It had been a very long day for us. Twice I lost my syringe and tube and had to look under the seats and all through my carry on bag. I am attributing all that to the long day, not to dementia. I had a nice Boogie Board conversation in Spanish with the nice Peruvian woman.

We arrived in Vegas at 10:30 pm. We got through customs quickly. Then we went to a surprisingly empty luggage pickup area. We got our bags and said goodbye to Jim and Peggie. Stan’s dad picked us up and we went to his house only to find my car’s battery completely dead. So Stan’s dad drove us to the RV park where we found that our propane had run out and everything in the fridge was spoiled. Plus there was no heat.  So back to Grandpa’s we went. We helped him put clean sheets on the guest bed.  And finally got to sleep. I flew home the next morning (without my phone which I had left in Stan’s dad’s car). It was the first time I fell asleep before takeoff -definitely not enough sleep last night. I was greeted by my son and my dad.

Stan stayed in Vegas and got me a new car battery and propane for the motorhome. He also found 6 cans of my food in the closet that we should have packed. He started driving toward home and camped for the night in the Amorgosa Valley and continued driving on US95 the next morning, only to be stopped in Hawthorne because of a rockslide above Walker Lake. After waiting an hour he decided to turn around and take a different route that would add 2 hours to his drive. It was hard for me to be without my phone for about 40 hours. Texting is now my main form of communication, along with the text to voice app on my phone. He finally made it home at 6 pm. 

All in all, an epic trip.

With lasting memories for sure! Because my new teenage friend, Fiorella, from the school tour already emailed me another photo and when I asked her to remind me which one was her, she sent me this:

Martina, Meg, Mel, Kath, Fiorella, and Shani’

I replied thank you and sent her a photo of my icy rain chain with happy January wishes from up north.

She is also emailing Andy in Spanish to help him with his first year of Spanish. Such a nice girl! I am so glad I met her and hope she will be able to visit us someday.

Galapagos to Celebrate our 25th Anniversary Part 2

After our early morning photo session on Floriana Island Monday, Stan and I decided that a relaxing morning on the boat sounded better than deep water snorkeling or zodiac rides. We did relax. We had discussed the fact that I was not doing well in the evenings. I had weaned myself off Zoloft under my doctor’s care in December and it was becoming apparent I needed it again. (No stigma about talking about this, paging Carrie Fisher/Princess Leia!). We went to see the ship doctor and she said she would see if she could get me some Zoloft the next day when we visit the biggest town in the Galapagos, since my primary doctor had said I could go back on it if I needed it. I also was treated to an Iguana Salt Scrub followed by a massage in the spa. Ahh, so nice. In the afternoon we had signed up for kayaking and that was a highlight but I did not bring my phone for photos. It was raining lightly but we went through some beautiful back waters between lava ridges.There were so many sea turtles! There were some young girls on this kayak outing – the youngest almost 5 years old. It was fun to hear their excitement. They counted the heads popping up – 14, 15, there’s another one! The shores and bushes were full of birds. After the kayaking we went to the Post Office Barrel on Floriana Island. It is a very cool tradition to have ship travelers hand carry mail as it was done in the olden days. Some of our group read the destinations on the addresses to see if they were near any of us. We picked up one from Sparks, Nevada and about four from Las Vegas and Henderson which we can deliver the next time we visit Stan’s dad. We left a postcard for Andy and it will be interesting to see how long it takes to get home.

On Tuesday, the ship had moved to Santa Cruz, the most human populated town in the Galapagos. We still wanted to save our energy for later in the day, so we skipped the early morning trip to the Charles Darwin Center. Our wonderful housekeeping person Gladys could only speak Spanish. I enjoyed Boogie Board conversations in Spanish with her. I had torn my skirt in Guayacil getting ready for our anniversary dinner. Gladys told me that on Tuesday she could have it sewn in town. I sent it to laundry with a note about the repair request.

We got to town about 10:15 and had a little time to walk around.

Then we ran into Jim and Peggie who had gone to the Darwin Research Center.

We were all to meet at The Rock, a bar, at 10:30 to catch buses to various activities. Jim, Peggie, and Stan were going to ride bicycles to a cane sugar plantation. I chose to visit a school.

The bicyclists getting ready to go
Stan and I hugging before parting ways

I visited the only private school in the Galapagos. We had been asked to bring books for their open air library. They had an Amazon wish list we could choose from.

Their library has grown from 400 to 4000 books in a year, since partnering with National Geographic and Lindblad.

I had 5 girls as tour guides. They were my son Andy’s age. They spoke English very well and were not allowed to speak Spanish with me. At this bilingual school, grade levels are based on English proficiency.

My guides

Their school garden that was flooded out in the last El Nino

My tour guides with me in their classroom. They were excited to use the word selfie in English for the first time.

My guides explained that they couldn’t use their phones at school because they didn’t work. I explained that we call that “no service”. They had to explain to their principal what they had learned about me. I showed them a photo of Andy.

The principal said they love blond boys. They said, “He plays the violin?” When I said, “It’s a viola, a little bigger than a violin.” They thought “little bigger” sounded funny! 

They have a nice computer lab

so I told them they could look up ALS to learn about my disease. They also want to email me to practice English.

I missed the sugar cane plant, but we all met up at a nice restaurant for lunch, Aqualarre, before going to see the giant tortoises.

The resident dog at the restaurant

And then, the Giant tortoises.

Giant Tortoise eating grass
Jim and Peggie looking at their photos
Stan photographing Giant Tortoise dung. I am glad I took advantage of the tall boots they provided. That was some sticky mud.

After the Giant Tortoises we were bussed back to town and had the option of staying in town to shop but we went back to the ship because we were tired. I ran into the doctor on the stairs and she gave me three Zoloft tablets, enough to start out with a half dose for 6 nights. Then I would be home to start back on full dose. Our laundry came back and my skirt was still torn. I went to the back deck to ask in Spanish if it was still possible to take it to town to have it sewn. The guys working back there went to find the hotel manager Roberto and I showed him my copy of the laundry bill where I said the skirt needs to be sewn in town. I told him Gladys said it could be done on Tuesday. I asked if it was still possible. He said he would go find Gladys. It was already after 4 but I got it back by 6 all fixed. Such nice service from every worker on the boat!

That night at dinner a band came in and sang happy birthday to a guest.

Then after dinner they played in the lounge and even some Ecuadorian dancers came in.

They got guests to come up to dance and I was one of them reluctantly. But it was fun. They made a train around the room and then we got in a circle and two people danced in the middle, then two others, etc. Then we crossed our arms and held hands and went into a tight circle in the middle and back out. I loved the skirts with the Galapagos pictures on them!

On Wednesday morning Stan and I had time to visit the bridge before breakfast.

Then after breakfast we went to Cerro Dragon for a hike to see land iguanas.

It was quite hot, even in the early morning 

We did see this guy as well as some others. They hang out under cactus waiting for something to fall. They can eat any part of the cactus. There are 15 species of prickly pear cactus on the Galapagos Islands. The cacti in this area have sharp spines but on other islands the spines are soft like hair because there are no iguanas on their island so they don’t have to use the spines in defense.

The molt of a crab, not a live crab

Then back to the ship. Stan got overheated on the hike so he opted to stay on board, but I went to the beach to try snorkeling again. I paired up with an older couple who were new to snorkeling. I saw a huge school of small silver fish, only about an inch in length. They swam by me and kept coming and coming. I later heard that these fish are what the penguins eat. After snorkeling I sat on the beach and talked with other nice folks from the ship. There was even some yoga going on.

After lunch we went on a zodiac ride and saw our first blue footed booby.

Then we had a presentation on Oceanography 101

Oceanography includes many other sciences: geology, geography, chemistry, biology, physics, astronomy
Ocean currents world wide
The oceanographic naturalist Jason is a Giant’s fan

This presentation was followed by a talk about things that Darwin missed. Here is a picture of every finch. 

The famous finches, plus new ones that were discovered

Thursday morning we were at Bartolome` Islet and departed early (6:15 am) for a hike to the top of the Islet. Jim, Peggie, and I all made the trek. Tune in next week for the rest of the story!