What happens after an epic trip?

Back to normal life. How do I write about normal life after a trip like that? It took an amazingly long time for me to feel rested and back to normal – about a week. First of all I want to thank our friend Chuck who came over to remove snow while were gone. He texted us this photo:

So nice to have help while we are gone

Also thanks again to my dad for watering my plants and bringing in boxes. Also thank you to Stan’s dad, John, and step mom, Cathy, as well as my dad, John, and step mom, Anita, and friends, Adriana, Phil and Josh, for hosting our son, Andy, while we were gone so we could take an awesome 25th anniversary trip.

I will categorize this into:

  • Love
  • Connection
  • Hope
  • Uncategorized

Love

I had my Mic-key button and tube replaced because 3 months had gone by and the balloon that holds it in place usually leaks slowly and needs to be replaced 4 times a year for people who are active like me. I texted my awesome nurse practitioner. She said she would be happy to replace it.

Taking the fluid out of the balloon

Making sure the placement is correct 

My husband watched and in three months they will observe him changing it and after that we will be able to do it at home. (Categorized into Love because I love my nurse practitioner and I love my supportive husband).

We had arranged for Stan’s cousins Lisa and Dana to visit our niece Jonika in Hawaii. Lisa texted this awesome photo of Jonika and Ollie.

I love her Big Island earrings, and of course I love Jonika and Oliver even more
Stan’s cousin Lisa the day after she returned. She loved her trip.

We also got more snow which I love.

Beautiful orchid from my friend Hella next door

Andy was able to practice snowboarding down our driveway.

Andy snowboarding down our driveway
My rainchain getting full of snow

It’s great to have a teenager to help with shoveling. And a snow day – no school, so he has time to help.

Andy shoveling and footprints of raccoons. I had him shovel the walkway the night before to make it easier in the morning.

Here is a new photo of my rainchain. It is awesome even in winter. 

Connection 

Andy and I were invited to attend a rehearsal of the Reno Philharmonic Orchestra on a Saturday morning.

There were two visiting teenage soloists.

Conductor Laura working with the teenage soloists

It was nice to share this with Andy. The music was beautiful. It was interesting for Andy to see how a professional orchestra rehearsal goes. He was able to pick out the problems that the conductor pointed out to the orchestra before she even started speaking. He might make a good conductor someday.

I got back in touch with a dear old friend from a job I had over 25 years ago.

Loved getting together with Lisa!

My monthly shipment of formula food was delivered and I asked Andy to stomp on the pillows of packing air with me.

All the shipping pillows of air popped.

This will become a monthly ritual. It is pretty fun and loud.

We bought tickets for 5 basketball games at University of Nevada and went to the first one on Saturday January 21. It was a close game between our Wolf Pack team and the Fresno State Bulldogs. Sadly our team lost. Even with me “yelling” DEFENSE! With my phone text to speech app.

I thought I was helping but it didn’t workūüôÉ
Even though they lost it still was fun

Regular readers will remember the hand delivery post office in the Galapagos (ship passengers leave postcards with no postage and each new ship that comes through checks to see if any passengers can hand carry mail back home). We were finally able to deliver the one we carried back to the guy that wrote it at his firestation. We had tried before and no one was there.

It turns out we were on the same ship the week after him!

We had fun remembering the same itinerary with him.

How could we forget such a great trip!
How could we ever forget such a great trip?

I have also returned to aqua fitness 3 times a week. It feels good to be getting back in shape. Cousin Lisa went with me once and Stan goes once in a while plus my friend Alice goes regularly and I am getting to know some of the other regulars.

On the last Thursday of the month there is an ALS Support Group and this is the first time I went. Stan went with me too. It was great to meet new people in our area who have ALS and their caretakers.

Great people I can’t wait to get to know better.

The ALS Association’s Care Services Coordinator came up from Las Vegas. She is new, and has a nursing and social work background. I really liked her.

Hope

A friend of ours, who plays guitar at our favorite Mexican restaurant, called Stan when we were waiting for our flight out of Ecuador. He had heard that the son of the owner of another great Mexican restaurant in Reno had gone to Mexico for stem cell treatment for ALS and he had great results. Then when we got back Stan got a call from Freddy. He came over to tell us his story.

Freddy who got great results from stem cell treatment

He said he couldn’t swallow or talk and could hardly walk. He also had a lot of pain. And the day after treatment he said he could walk and talk and eat again and the pain was gone. He told us about all the treatments they gave him. That gave us hope.We emailed the doctor all my health records. And we haven’t heard back yet.

We checked ALSUNTANGLED and began to research stem cell treatment for ALS. Not everyone gets dramatic results like Freddy’s.

A week later we met Freddy and his wife Vera at a restaurant to learn more about his stem cell treatment.

We are going to meet with my local neurologist on Monday to see what he thinks.

Uncategorized 

Through all this I have a daily struggle with saliva in my mouth. I have a medicine that is a drop under my tongue and tastes horrible if it gets on my tongue. Sometimes it will make my mouth unbearably dry as in lips stick to teeth, other times the front of my mouth is full of saliva that I can’t move back to swallow. Stuffing one of my pretty napkins in my mouth helps but I know it is not attractive. I do realize this is a minor inconvenience I can live with, compared to what other people I know are going through.

Galapagos to Celebrate our 25th anniversary Part 3

‚ÄčThursday 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!

Galapagos to celebrate our 25th anniversary Part 1

On New Years Eve we flew to the Galapagos. We had to leave our bags outside our rooms at 5:30 am and be on the bus to the airport at 6:30 am. 

All smiles from Peggie, Jim and Stan on the very early bus to the airport.

After a 1 and 1/2 hours flight we were in the Galapagos. It was pretty exciting to be at such a special place. We had a little time to wander around and I saw my first iguana.

We took a zodiac to get to the ship. On the way to our ship we passed one that used to belong to the King of Morocco and Grace Kelly. It is called Grace and now is a tour boat.

Then we arrived at our ship.

We got to our room before our bags. Our room had a lovely holiday decoration on the door. Every cabin had a different one.

Then we attended an orientation meeting after which our bags were in our cabin.We got unpacked and I found that my bipap electronic connection had been smashed on the airplane or transfers. I checked to see if the doctor had a replacement. She didn’t, but she called the electrician who said he could fix it in ten minutes. He did fix the smashed part but because a pin had fallen out it still wouldn’t work.

Then we had an excursion back to the capital city of the Galapagos which has a long name but everyone calls it Cristobal. I had to talk Stan into coming because he was so exhausted. It was New Years Eve and our naturalist guide Antonio on our zodiac told us about the Ecuadorian New Years celebration. 

Our naturalist guide Antonio telling about the New Years Eve celebration in Ecuador next to a sea lion who decided to nap on a bench.

For the New Years Eve celebration, people make what they call puppets out of paper mache that look like their loved ones who died in 2016, and then they set them on fire at midnight. There were a lot of them and even some men dressed as widows wailing their grief.

I saw this one and several others in wheelchairs. There was supposed to be hike on this day, but because it was New Years Eve the places we were supposed to go were closed. I was a bit disappointed, but we did see some cool things around town. And our guide told us we were lucky to be in town for New Years Eve.

Another wheelchair puppet, the sign on the wheel says 35 countries, so this was an adventurous person.
Rotisserie chickens in front of closed store. Probably getting ready for the big night.
A fountain on the waterfront with a map of the Galapagos

We got back to the ship on the zodiacs again.

Approaching our ship around sunset.
Jim and Peggie in the zodiac with the sun getting ready to set
My sweet husband and me with the sun behind us

By the time we got back to the ship I was felling pretty sad. Stan’s exhaustion and my broken bipap made me feel like this trip wouldn’t be what I expected. The wheelchairs, plus the college girl I sat next to at lunch who her mom called very adventurous (as in sky diving and bungee jumping) all made me think about what I am losing with my ALS. I have been adventurous (not quite like that gal at lunch) and I was making the mistake of anticipating the progress of my disease. But I was so sad, and this is the only picture of me barely smiling.

But grieving is an important thing to do and I realize it’s part of life to lose your physical abilities. And the grieving made me realize that the Ecuadorian New Years Eve celebration makes sense. Grieve about what happened in the last year and then move on.

I didn’t feel like going to the New Years Eve party on our ship so instead Stan and I visited the bridge.

The bridge on our ship facing the Capitol of the Galapagos (we were anchored)

They actually offered rides into town for the midnight celebration  (last zodiac ride back to the ship at 2 am) as well as burning a few little puppets on the ship at midnight. But we were exhausted after two very early mornings and hit the sack. Stan let me use his bipap, saying he breathes better at sea level. So kind of him. I hope that he really was breathing better.‚̧

New Years Day was much nicer. I realized that I can focus on the present which is pretty damn good.

The view from our cabin window on the first day of 2017

I started the day eating breakfast on the sundeck so I could begin my gravity feed early be ready for the day’s events.

My New Years Day breakfast view

We went to a beautiful beach with very fine sand. I wanted to try snorkeling from the beach rather than deep water because I haven’t tried it since my diagnosis. I tried it out and was fine until I tried a dive. Instead of clearing my snorkel when I came up I swallowed sea water. Luckily I didn’t aspirate. It scared me so much that I went back to the beach and Stan paired up with two other people to continue snorkeling. It was a nice beach and I relaxed for awhile. I watched kids playing in the water.

Then I had a visitor.

The animals here are not afraid of people because there is no hunting. I took a walk and found something really cool.

It’s a baby whale skeleton and I couldn’t wait to tell the people sitting next to me. Stan was coming out of the water too.

Part of a family from Florida who I told about the skeleton with Stan

I know I am not the first person to see it but it felt cool to be the first person from our ship to see it!

Then in the afternoon we did a 1 3/4 mile hike around Punta Suarez on Espa√Īola Island. The hike was mostly on boulders and it was good to have a walking stick. We saw many colorful iguanas, sea lions and mama and baby sea lions, as well as one type of booby bird and babies in the nest, and albatross adults as well as those trying to learn how to fly.

A baby Nazca Booby
This Galapagos Hawk is the only predator on the island. He will attack baby birds when mom is off getting food.

Of course lots of photos were taken

The ultimate destination was a blow hole that water blows out of when the tide is right.

At the New Years dinner I didn’t feel well and left when I was done eating. I spent some time in our cabin and decided to go up to the bridge to be able to see something and get my motion sickness (if that’s what it was) to go away. They let me go out on the foredeck and I was able to watch a lighthouse which helped. I also was treated to birds fishing and lots of action in the water. I started to feel better and went to the lounge for a presentation on photography by Antonio, who has had photos published in National Geographic. I got there just in time to hear what he was saying about how to compose good pictures.

The next morning was beautiful and we got up early for a photo exhibition walk.

We got excellent instruction from Antonio. 

Here are a few of the photos from that walk.

Now you should see better pictures in my blog because this is the first time I have taken any photo classes. 

And I that is the end of chapter 1 of our trip. I thought I would have more time to write, but there was so much to do and so many wonderful people to meet and talk with on our boat. Stay tuned for more next week.