Cruising Without a Stomach

I’ve never had much desire to go on a cruise and there are some things that have made it seem even less appealing such as occasionally having vertigo, occasionally getting seasick, and now having no stomach. My husband’s brother and sister-in-law, on the other hand, loved cruising and did it often. As they were nearing the end of their life, my husband started talking about using some of the inheritance money we would receive and doing a cruise in their memory. I couldn’t say “no”. On one of their cruises, they had received an upgrade to a Neptune Suite and Donna told Gary that she didn’t care if she had to wash dishes, that’s how they were cruising from then on. So, our plan was to cruise in a Neptune suite. My husband, Keith, even shared our plans with Gary and Donna before their death and they were very pleased to hear of our plans.

When Keith started talking about the cruise and doing the research, he was looking into Mediterranean cruises. I asked him why there and he started talking about all the ports. I told him all the ports were places we could go to on our own and that the only times I have been tempted by a cruise were when I saw pictures of Alaskan cruises, including those taken by Gary and Donna on their multiple trips. With Alaska, you can see places from the ship that you can’t see otherwise. Keith enjoys travel planning as a hobby and I usually just let him do it, often not knowing the details of where we’re going until we’re in the car on our way. But when I do offer input, he does listen, and he changed his course to planning an Alaskan cruise.

We started the conversation early in COVID, but wanted to wait till COVID “was over”. We were looking at going in May 2023, but it was January before Keith figured out exactly what he wanted to do and then it was no longer available, so we waited and went this year. The Holland America tour we ended up with went north from Vancouver with a week of land and then cruised south from Whittier, Alaska, for a week and ended back in Vancouver.

Day 1 – Friday, June 28, 2024 – Traveling from Kansas City to Vancouver

We flew into Vancouver a couple of days early. With a 1:50 flight out of Kansas City, we had planned to eat lunch at the airport, but didn’t allow enough time (still adjusting to the new KCI), so grabbed BBQ to go just before we boarded the plane. I’ve always enjoyed unsweetened iced tea, but it has 100% been my go-to drink post-gastrectomy. When flying, I look for bottles past security to get to take on the plane and then ask for a cup of ice during beverage service. I had checked a couple of places and they only had flavored or sweet tea. The BBQ place didn’t have tea in bottles either, but I was delighted to find they had it in the fountain. Knowing one cup wouldn’t be enough, I poured the tea into the Yeti cup I brought with me and got a refill. The only problem, there wasn’t room for the refill in the Yeti cup, so I was now balancing my carry-on, the food, and two drinks. I somehow survived without spilling and managed to eat the tasty burnt ends on the plane without making a huge mess. Success! I didn’t finish the overpriced burnt ends (airport pricing) but my husband finished them off after eating his meal, so no food was wasted.

Heading into Denver, we had quite a bit of turbulence and I wasn’t feeling great, but took a couple of tums and made it through. The landing was the roughest I recall ever experiencing. It was like the runway came faster than the pilot was expecting. My husband actually bumped his head on the seat in front of us.

I always pack lots of snacks when flying, making sure I have plenty even if we get delayed on the tarmac. It wasn’t until a year or so ago that I learned blue ice is permitted in carry-ons, as long as it is completely frozen. I have a small cooler bag that I put blue ice and cheese in. I can also fit one bottle of iced tea in it, if any had been available. Other snacks I pack include beef jerky, protein bars, and nuts. And of course, there’s the airline provided snacks. I don’t recall what all I ate, but I had enough to make it through. Even though we were a few minutes late leaving Denver, we arrived on time in Vancouver, landing at 6:19 local time. By the time we got our luggage and got to dinner, it was after 8, which meant it was after 10 Kansas City time.

By this time, it had been long enough since I had my last snack that I was hungry (yes, I experience hunger, it just feels different than it did when I had a stomach). Sometimes in the past I’ve had an issue where I’ve gotten too hungry and then basically couldn’t eat. Fortunately, 7 years post-gastrectomy, my body has adjusted more, and this wasn’t an issue. I was disappointed to learn that Canadians only do sweet tea and unsweet tea wasn’t an option.

After dinner, we went to the hotel room and were in bed by 10:30.

Day 2 - Saturday, June 29, 2024 - Vancouver (Chinatown, Gastown, and North Vancouver)

After breakfast at the hotel, we took the SkyTrain into town and then a bus into Chinatown. We arrived about 10:30 for an 11:00 Wok Around Chinatown tour. Since we had time to kill, we wandered around a little, but then about 10:50 tried to find where we were supposed to be and couldn’t find it. A couple of text messages and a phone call, and we finally met up with the guide and the rest of the group a little after 11. The four-hour tour included learning about Chinatown and eating along the way. I wasn’t quite sure how it was all going to work out because if we were eating every 20 minutes, for instance, I likely wouldn’t be able to eat that much or that often as I usually need an hour or so between times of eating. While the guide was going over the schedule at the lovely Dr. Sun Yat-Sen Classical Chinese Garden, we learned that the stops were going to include BBQ, a couple of bakeries for a surprise pastry (which turned out to be an apple tart), a lemon custard, and then finishing up with a dim sum lunch. We had not understood the dim sum to all be at one place, so that adjusted my expectations and also let me know that we weren’t getting a full lunch until likely after 2:00.

As always, I had snacks with me and as it was approaching 11:30, I had a debate with myself of whether to eat a snack or not as I still wasn’t clear on how long it would be to the first food stop. I decided to have a few nuts and I’m glad I did. We toured the garden and then had a first tea (hot tea) stop and then went down the road to Chinatown BBQ. We stayed outside while our tour guide went inside and then brought out two different types of roasted pork, one savory and one sweet BBQ. My snack had been light enough that I had no problem eating both pork dishes. It was just a sampling, so had no issue with being full.

The next stop was New Town bakery where the guide brought out delicious apple tarts. I wasn’t sure that I should, but I ate the whole thing and fortunately, didn’t regret it later. We then went to the Chinese museum. We didn’t have time to tour the museum, but the guide told us about the Chinese immigration to Canada, including that of his family.

Next stop was the Chinatown Story Telling Centre where we learned even more about early Chinese in Canada and learned that up until World War II, the Chinese were considered residents, not citizens and it wasn’t until after the War when some volunteered to fight for Canada that they were granted citizenship. A stop at an herbal medicine shop and then to The Boss bakery where we had the lemon custard. This time, I chose to just have a few bites of Keith’s.

After a brief stop at a shop that sells family worship supplies and explain that custom, we went to the oldest Chinese tea shop in Vancouver and sampled both hot tea and iced tea. The iced tea was flavored and sweetened with honey but wasn’t too bad. Thought about making a purchase, but the group was waiting, so I didn’t.

Next up was the Dim Sum lunch. Our guide had preordered 10-12 different dishes. I was able to sample all except the last one which came after I was already full. Some of the dishes were ones I have had previously when I’ve had Dim Sum and some were new.

After Chinatown, we went to Gastown and walked around, checking out various shops and the famous Steam Clock.

Since I have a need to drink between meals to stay hydrated, I pretty much carry a drink with me all the time. In the morning, it’s water and then I switch to tea at lunch. With not having unsweetened iced tea available, I made hot tea in the hotel room and refrigerated it overnight (using the bottle that I had managed to purchase in the Denver airport), so it was cold in the morning. I filled my Yeti cup with ice and water in the morning, and then when the water was gone, switched to the tea. That made it through most of the afternoon. I had run out of ice, but still had tea when I saw a Subway in the SkyTram station and asked if I could get some ice and was able to return my tea to iced tea. We took the SeaBus to North Vancouver for dinner.

 

Day 3 – Sunday, June 30, 2024 – Vancouver

The land portion of our Holland America tour officially started on Sunday, but all that meant was we had to change hotels. The new hotel was at the airport, so we delivered our luggage to the hotel in the morning and then went back into the city on the SkyTrain. We rode the aqua bus along False Creek, explored the shore, and then ended up at Granville Island where we visited the shops in the Public Market and the Artisan District. We went to a seafood restaurant for dinner and shared a lobster tail, jumbo prawns, oysters, ahi tuna poke, 1/2 Dungeness crab and potatoes. My husband, of course, ate the majority, but I sampled everything except the oysters and the ahi tuna poke, neither of which I care for.

 

Day 4 – Monday, July 1, 2024

Being at the airport hotel, it didn’t make sense to go into town to do anything Monday morning even though our flight wasn’t until almost 2:00. We had to have our checked luggage ready to be picked up at 9am and then we just hung out in the room until about 11 at which time we headed over to check in. It was a long walk through all the airlines and we didn’t think we were ever going to get to Air North, but we finally did. Keith had read very good things about a restaurant in the airport so our plan was to go there for lunch, but it turns out it is in the international terminal which we couldn’t access, so we settled on a pub in our terminal. There was a couple and sister from our group that we had talked to as we were checking in that were sitting at a large table and they invited us to join them. Food wasn’t spectacular but sufficient.

The flight to Whitehorse in the Yukon was about 2 ½ hours. A little into the flight, I decided it was snack time and had one of my protein bars. Shortly after I finished it, they came through with complimentary sandwiches. It’s been a long time since I was served more than just a little snack on a plane and especially wasn’t expecting a sandwich at 3:00 in the afternoon. If I had known it was coming, I would have held off on the protein bar, but was able to eat a lot of it (especially the meat and cheese). It was followed by a warm chocolate chip cookie which I could manage only a few bites of. We were only in Whitehorse long enough to go to the bathroom and get some instruction before turning around and loading the plane for the 1-ish hour flight to Dawson City.

After we checked into our room in Dawson City, we made our way to a Jamaican restaurant that had only been open a few months. Keith likes Jamaican food more than I do, but it wasn’t bad. Many of the restaurants that we might have chosen to go to were closed on Monday.

We were sad to learn that a wildfire had broken out on Sunday in Denali National Park, right across the river from the hotel where we were scheduled to stay Wednesday and Thursday nights. As part of fighting the fire, they had cut power and water to the hotel. I can’t imagine what it was like for the people that were there; apparently, they were using port-a-potties and the restrooms on the bus. Not sure what they were doing for food with no electricity and no water. We were hopeful that it would reopen by Wednesday, but suspecting that it wouldn’t.

 

Day 5 – Tuesday, July 2, 2024 – Dawson City

Dawson City is a town of less than 1,500 in the Yukon. It feels like you are stepping back in time with the buildings mostly being unchanged from the time of the Klondike Gold Rush in the late 1800s. The only paved road is the main highway, the rest are dirt roads and there are boardwalks instead of sidewalks. With light rain on and off, we had to be careful to avoid the mud and water holes, especially where the boardwalks were missing. We rode the ferry across the Yukon River and at the urging of one of the workers, stepped off so we could say we were at mile marker 0 on the Top of the World Highway. We walked around checking out the town and joined our group for a tour of Klondike Mining Company Dredge No. 4, the largest wooden hulled bucket lined dredge in North America, which was in use 1912-1959.

After dinner, we joined four other members of our tour group at the popular cancan show at Diamond Tooth Gerties Gambling Hall. It was fun getting to know other members of our group better. With over 20 hours of daylight, we walked around the town a little more before heading back to the hotel.

 

Day 6 – Wednesday, July 3, 2024 – Fairbanks, Alaska

This is the day we were supposed to fly to Fairbanks and then take a bus to Denali. We had learned on Tuesday that we would be spending the time originally scheduled in Denali in Fairbanks instead. Obviously disappointed, but what we had been expecting ever since we heard about the fire.

This was the earliest start to the day to this point of the trip. I’m not a morning person, so I wasn’t thrilled that we had to have our luggage set out by 7am. Because there’s not a terminal at the airport, we checked in with the airline representatives at the hotel. By 8am, we were on the bus to the airport. Since we were flying from Dawson City to Fairbanks, Alaska, this was an international flight. Security was done by manually inspecting our carry-on bags on a folding table and quickly scanning us with handheld wands. Many of the airline/airport employees had multiple jobs as we saw the same people checking us in at the hotel, doing security, and guiding the airplane on the ground.

We were to our hotel in Fairbanks by 11am, ate lunch in the hotel restaurant, and then took the shuttle to Pioneer Park, which opened in 1967 to celebrate the centennial of the Alaska Purchase. It looked like a nearly 50-year-old park that could use some tender loving care but was still enjoyable. The thing I found the most interesting was The Harding Car which was the train car President Harding rode in when he came to Alaska in 1923 to drive the Golden Spike for the Alaska Railroad.

One of the things that we had been looking forward to, as well as time at Denali National Park, was an excursion from Denali, flying north of the Arctic Circle to Coldfoot, Alaska, home to the world's northernmost truck stop. When our plans got changed, Keith was able to get us rebooked on the same excursion out of Fairbanks Wednesday evening. Wednesday afternoon, we got a phone call that because of the weather, they couldn’t fly into Coldfoot. They had a flight earlier in the day that couldn’t land and had to turn back. They then offered us a flight to Fort Yukon, Alaska, a native community, still north of the Arctic Circle, so we took it. There was no truck stop or place to buy souvenirs, but we were greeted by a local woman who took us on a tour around town. Fort Yukon (Gwichyaa Zhee in the Gwich'in language), with a population of less than 500, is far from any highway and over 100 river miles from “civilization”. The residents are largely self-sufficient as it is so expensive to have anything shipped in. We stopped outside our guide’s parent’s house where we were greeted by her father and her four-year-old son. Both were a delight as her father shared more about their family history, and her son was a 4-year-old giving everyone a hug and making you smile.

 

Day 7 – Thursday, July 4, 2024 – Fairbanks, Alaska

We found out the night before that Holland America had put together a free all-day excursion to try to make up for the itinerary change. It was going to include gold panning, lunch, and a riverboat ride. However, there would not be a refund if we had already booked another excursion (which we had) and the meet time was 9:30 which was earlier than we wanted to do with our late night the night before, so we stuck with our original plan. I slept in and didn’t get up until almost 10. I felt well-rested when I got up and was glad I let myself sleep late. I decided to skip breakfast (most days I’ve had a pack of granola bars) and we headed to lunch a little after 11.

For lunch I had a crab burger (crab cake on a bun) and Keith had reindeer sausage. Both were good. Then we headed back to the hotel where our guide picked us up for the excursion. It was only us and a boy with his grandparents. I enjoyed the boy’s excitement around everything and asking lots of questions. The guide was great with him. We went to the University of Alaska Museum of the North, a culture and history museum, and then on to the University of Alaska Large Animal Research Station, my favorite part of the day. We saw musk ox, the only animal that is still around and not changed since the ice age, up close. We also saw reindeer, but the guide wasn’t able to get them to come as close for viewing. Final stop was North Pole, Alaska, and the Santa Claus House, a year-around Christmas store with Santa. As expected, they get lots of mail addressed to Santa and answer them with a North Pole postmark. The kid with us was pretty excited to go there.

Day 8 - Friday, July 5, 2024

It wasn’t until Thursday afternoon after our excursion that we found out how we were getting from Fairbanks to Anchorage since we weren’t supposed to be in Fairbanks. We were supposed to be in Denali and taking the train from Denali. The good news was that the rail service had reopened and we were able to take the train from Cantwell Station (a little south of Denali) to Anchorage. The bad news is we had to be in the lobby of the hotel, with our luggage, at 5:30 a.m. to board a bus for a 3 hour ride as we needed to be at Cantwell Station by 9:30 to make sure we were there when the train arrived. The train arrived about 9:50 and we were on our way for the 7-hour train ride to Anchorage by 10:00.

There were two domed cars on the train, each seated 88 passengers. Since it was the first trip with passengers after the railroad had reopened, our group of 41 were the only ones on the train and were split between the two cars, so we had lots of room to move around and could easily move from side to side to have the best view. The picture taking wasn’t as great as it could have been as it was raining part of the time, so we were dealing with water on the windows. We did have the back car, so we were able to step out on the platform to take pictures from three directions and not deal with the windows, but did have to battle the wind.

We had lunch on the train. Each train car had a full kitchen downstairs under the domed car. I had a BLTO (onion) with lots of bacon. I had brought plenty of snacks with me, but thought the salmon dip on the menu looked good, so ordered that later in the afternoon as my snack.

 

Day 9 - Saturday, July 6, 2024 – Anchorage, Alaska

We took a trolley around Anchorage in the morning and learned a little about its history, and specifically the 1964 earthquake.  We went to Earthquake Park where we stood on the fault line and you could actually see the ripples left behind from the earthquake. There are still homes underneath the ground that were sucked into the earth.

For lunch, we shared a 3 item appetizer with garlic shrimp, calamari, and salmon dip. After lunch, we took a shuttle to the Native American Heritage Center. They had some nice exhibits and we were quite impressed that the natives demonstrating the dancing were all young people, some still in high school. We also spent quite a bit of time wandering around shops today.

For supper, we split a pound of Alaskan King Crab legs. We had seen them on the menu other places for $100-$130 for one to one and a half pounds. The $80 price tonight seemed like a bargain. It wasn’t until we placed the order that I realized I’m not sure that I’ve ever had them before, being much more familiar with snow crab, I basically ate one of the four pieces (although it was one of the two bigger ones) and Keith ate the rest. I did enjoy it.

 

Day 10 – Sunday, July 7, 2024 – Boarded Ship

On Sunday, we took a train from Anchorage to Whittier where we would catch the cruise ship, Nieuw Amsterdam. We had to report to the hotel lobby at 11:30 a.m. for a 11:45 departure by bus to the train station. The 2-3 hour train to Whittier was scheduled for a 12:45 departure. This schedule made figuring out lunch a bit of a challenge. We could get lunch or a snack on the train, but knew it would be a late lunch. We opted to eat a big late breakfast before boarding the train. In the interest of time and convenience, we ate breakfast at the hotel which was too expensive for a not very good breakfast buffet, but it was food that should succeed in holding us over.

While it was another glass domed train, on this train, the seats were at tables as opposed to the earlier train we had taken. We also had assigned seating; I was glad we were headed forward instead of backward. The train was late, so we didn’t depart until after 1:00. I decided to order the Alaska smoked salmon chowder in a bread bowl. The service/kitchen was very slow, unlike what it had been on our previous train ride. I didn’t eat a snack because I had ordered lunch. It was getting close to 2:30 and still no chowder. They were actually starting to come through with tickets for beverages and asking people to close out their tabs so they would be done before arriving at our destination. They weren’t delivering the ones with food that hadn’t been delivered because they didn’t want us to pay for something we didn’t have, but that told me I wasn’t the only one wondering if it was going to arrive. I was getting hungry. I was thinking very seriously about going ahead and having a snack I had brought, but wasn’t sure if I should or not. About that time, fortunately before I got a snack out, the chowder finally arrived. I’m glad I hadn’t eaten the snack as I wouldn’t have been able to eat the chowder if I had. It was good; not necessarily worth the wait.

Less than an hour later, we arrived at our ship. Going through security went smoothly. I wasn’t allowed to take my bottle of tea onto the ship, but I was able to pour it into my Yeti cup. The concern was the plastic bottle, not the liquid. That just meant I only had one bottle to refill for the rest of the trip instead of two as I had also packed one in my checked luggage. The information we had been sent said that any food taken on board the ship (both initially and returning from ports) had to be factory sealed. I had spent quite a bit of time before the trip evaluating my snacks and figuring out what I had to do to be able to have snacks during the land portion of the trip, unopened packages when we boarded the ship, ziplock bags to put them in for an excursion, but not putting too much in because I wouldn’t be able to bring it back on to the ship, etc. That was all wasted stress as I didn’t make a point of discarding any open packages from the first week of travel and I was never questioned about any of them, both in my carry-on and in my checked luggage. I presume that doesn’t mean it wouldn’t be different a different time, but on this trip, it was a non-issue.

As I said before, we had a Neptune suite which was a nice roomy suite with a large balcony. There were some special perks that came with the Neptune suite, the best of which was the Neptune Lounge which was right across the hall from our room. They cycled through about three menus of snacks (morning, afternoon, and evening) so there was always food available. We probably could have made a meal of the offerings there, but we never did. It did work well for many of my snacks. And the best part was there was always unsweetened iced tea in the afternoon and evening!

We ate dinner in the main dining room (which we did most nights). One of the additional perks of the Neptune Suite was priority seating, so we never had to wait and always were seated at a nice table fairly close to the windows. When you ordered, you ordered everything at once, including dessert. They expected each person to order an appetizer, entrée, and dessert. That is obviously too much food for me, but I decided since we were paying for it anyway (meals are included), I might as well get my own appetizer and dessert even though I may only eat a few bites. Keith and I both got to sample two desserts instead of having to agree and share one like we usually do. This first night, I had French onion soup and rainbow trout.  We had chocolate fudge brownie cheesecake and a hot fudge sundae for dessert. It was fun to have a couple of bites of each. Room service was also included, and I ordered cheese and nuts one evening for a snack.

 

Day 11 – Monday, July 8, 2024 – Hubbard Glacier

Today was spent at sea, cruising south. We arrived at Yakutat Bay, home to Hubbard Glacier late afternoon. Knowing the cruise ship wasn’t allowed near this Glacier, we booked an excursion where we got on a smaller boat and were allowed within about a half mile of the glacier. One of the few glaciers that is still advancing, Hubbard Glacier is 6 miles wide and 400’ high. Because of the size, it felt we were closer than we were. While we were there, the glacier was very active. We saw (and heard) several calvings, where ice falls from the glacier into the water.

 

Day 12 – Tuesday, July 9, 2024 – Glacier Bay

We spent much of the day in Glacier Bay. Although there are more glaciers here, they were not active like Hubbard was and we were farther away, so they weren’t near as interesting. We did also see a few whales, but I never got a good luck at them.

For our time in Glacier Bay National Park, we were joined on the ship by park rangers, an Alaska Native Voices Cultural Ambassador, and Alaska Geographic representatives who brought books, maps and items to sell. The only thing I bought was a couple of postcards.

 

Day 13 – Wednesday, July 10, 2024 – Skagway, Alaska

We arrived in Skagway overnight and had to get up early for a 7:30 a.m. excursion. This was a day I was thankful I had brought granola bars with me as I didn’t want to take the extra time to have breakfast on the ship, but instead just eat on the way to our destination. The dock in Skagway isn’t open to the public because of mudslides, so we left the ship via a tender boat and then took a bus to our White Pass Rail & Klondike Highway excursion. We rode a narrow gauge train on tracks which were laid in 1898 during the Klondike Gold Rush to White Pass and into the Canadian Yukon. Once again, it was rainy and foggy and much of the time the “beautiful canyon” was full of fog. The little glimpses we did see looked nice. We then took a bus back down to Skagway. We walked around town the rest of our time, including having lunch, sharing fish and chips and one king crab leg. It was another town, like Dawson City, that made you feel like you were back in time to the 1800s and the time of the gold rush.

 

Day 14 – Thursday, July 11, 2024 – Juneau, Alaska

We had a later excursion time than yesterday, so had breakfast on the ship before disembarking for our excursion which was a float plane ride over the Juneau Icefield. We saw several glaciers from the air, but since it was another cloudy day, many of the pictures look like they were taken in black and white, but it was still cool to see from the air.

For lunch, I decided to take a break from the seafood I was having nearly every meal, but still get something I can’t get at home, and enjoyed a reindeer sausage corn dog. It was pretty good. After lunch we checked out the Alaska State Capitol building (we had visited the Hawaii Capitol last year, so it seemed fitting to see the Alaska one too). We then rode the Goldbelt Tram up 1,800 feet which gave a nice view of Juneau.

We ate supper back on the ship. Our cruise package included one specialty dining experience and we had selected to have it tonight at the Pinnacle Grille. This is one of the meals when I had to get over wasting food and just enjoy the experience and the food in small portions. I had a few spoonfuls of lobster bisque, a tasting of Keith’s Clothesline Candied Bacon, and a small filet and lobster tail for my entree. At home, I would have just eaten one and taken the other for lunch the next day, but here I had a few bites of each. I finished the meal with a few bites of my Key lime pie and of Keith’s chocolate souffle.

 

Day 15 – Friday, July 12, 2024 – Ketchikan, Alaska

We were due in Ketchikan at 11 and had an excursion at 12:15, so we went to the buffet when it opened at 11 for an early lunch. They were slow opening and we impatiently waited along with many other passengers. After about 15 minutes, the people on our side of the ship learned that a portion of the buffet on the opposite side of the deck was open and had been for some time. So, we all went over there to get our food.

The Bear Encounter by Land and Sea excursion was the one I was most looking forward to, but also the one we were the most concerned about. It was a 4-5 hour excursion and the website said, “Bears have an acute sense of smell; do not wear strong scent or bring food of any kind.” Even though the website also said a light snack was included, we weren’t sure when the snack would be, if it would be the right type of food for me, and if it would be enough to satisfy my needs over that long of period. While I’m usually comfortable sneaking food in where not “allowed”, I don’t have that same comfort level when bears are involved. My husband, being the great planner and very concerned about me, took it upon himself and had multiple conversations with the cruise company who also talked to the excursion company both before and during the cruise. The excursion involved a 40 minute bus ride, followed by an hour long boat ride to the place where we would then walk down a path to see black bears. We were told we could take food on the bus and boat and then we could leave our bag on the boat for the hour or so spent at Neets Bay Bear Observatory, so we decided to go ahead and do the encounter.

When we were getting ready to get off the boat, we learned that boat was leaving us and another boat would be coming to pick us up when we were done at the observation area, but the guide assured us that bringing our bags and snacks on the trail was no problem. So basically, all that worry for nothing!

As we walked the trail to Neets Bay Hatchery and the observation area, the guide pointed out scratches on the trees that were from bears. We had heard that groups weren’t seeing bears because the salmon weren’t spawning yet and that’s what attracts the bears. We waited about an hour and didn’t see anything besides bald eagles and some other birds when some in our group saw a bear. Keith looked and saw just a glimpse before it went back into the woods, by the time I looked, it was gone. And then 10 minutes later, it was time to go.

We figured our group had seen just enough to not get the $100 credit they give if you don’t see a bear because they are that confident you will see one. We were pleased to find out we each received the credit after all. It didn’t change the disappointment in not seeing them, but at least we got a small compensation for our 5 hours spent to see no bear.

When we got back on the boat, we were given the provided snack of a choice of a selection of salty snacks, along with a bottle of water. I’m glad I had brought my own snack which I ate part of on the way.

When we got back to town, we wandered around Ketchikan a little and checked out Creek Street before getting back on the ship.

 

Day 16 – Saturday, July 13, 2024 – Cruising the Inside Passage

Today was spent on the water, cruising the inside passage, We did see one thing we hadn’t seen the entire trip…the sun! The water actually looked blue today, the rest of the trip it had been basically gray. We spent quite a bit of time on the bow looking for humpback whales and orcas. There was definitely activity, but I didn’t get any good looks.

We went to one of the other premium dining restaurants for supper as we had some nonrefundable ship credits to use up.

 

Day 17 – Sunday, July 14, 2024 – Vancouver

We arrived at the port in Vancouver early in the morning and had to be off the ship by 9 am, so no sleeping in. Rather than taking the time to go to a restaurant for breakfast and have to get up that much earlier, we chose to have room service delivered to the room.

After disembarking the ship, we headed to the Vancouver Aquarium where we enjoyed a sea lion show and other animals.

 

Day 18 – Monday, July 15, 2024 – Traveling home

With a flight scheduled to depart Vancouver at 12:40 pm, we didn’t do anything besides have breakfast and go to the airport Monday morning. We thought today we would be able to have lunch at the place at the airport that Keith had wanted to at the beginning of the trip, only to learn that flights to the US are out of their own terminal instead of the International Terminal. So, we ate standard airport food.

We were supposed to arrive in Denver at 4:38 pm and Kansas City at 8:43 pm. Our flight left Vancouver on time, but when we got to Denver, we had to circle the airport as it was closed for weather. The pilot warned us that we may have to divert to a different airport as we had a limited amount of fuel. And sure enough, a few minutes later, we were on our way to Rapid City, South Dakota. The Denver airport reopened about the time we landed in Rapid City, but by this time, our flight crew had reached their limit, so couldn’t return the plane to Denver. We had to disembark in Rapid City and wait for a new crew to arrive from Denver. But, before we could go to a gate, they had to call in airport employees that had already went home for the day, so we got to sit on the plane. When we finally got off, we were thrilled that the one restaurant in the airport was open, so we could get something for supper. I’m not sure, but I think they may have also been called in to reopen. With very limited staff, they did a good job of trying to keep up with all the business. Unanticipated instances like this is why I overpack snacks while flying, but the reality is I hadn’t overpacked for this trip home as much as I probably should have. If we hadn’t been able to get off the plane or if the restaurant hadn’t been open, I think I would have been in distress mode, but fortunately that didn’t happen. We finally had a new plane and were headed back to Denver. We landed about midnight. The motel shuttle had stopped running for the day, so we had to get a taxi. We got to our motel room about 1 am, with no toiletries or clean clothes for the next day.

 

Day 19 – Tuesday, July 16, 2024 - Traveling Home Day 2

It was a short night as we had to be on the motel shuttle back to the airport at 7:30 am for our rescheduled flight. Everything was on schedule today. My eldest had been going to pick us up at the airport on Monday night, but couldn’t get off work to do so on Tuesday. When we were getting ready to leave Rapid City Monday night, I had posted on Facebook about our flight adventures and asked if anyone wanted to pick us up and one of our friends volunteered, so we didn’t have to take a taxi home from the airport. It felt good to be home when we finally got there.

7th Anniversary

Today marks 7 years since my total gastrectomy. I haven't posted in a year and for the last few years, I've only posted once or twice a year. What that mainly means is that I'm doing great, living a normal life, so much better than I ever envisioned with this life without a stomach.

It's been since my 3rd annniversary since I talked about weight. For people that are contemplating this surgery or recently had a TG, there are always questions around weight: How much did you lose? When did you stablize? Did you gain weight back? etc. etc. As with everything, each person is different, but I thought it might help to summarize the weight changes here and give an update of what has happened over the last four years.

As I've shared before, I went into surgery overweight at 243, so weight loss for me was a fringe benefit of the surgery. I dropped to 230 basically immediately after surgery and continued to lose weight pretty rapidly for 9 months. In November, I started to stablize around 170, but then in December and Janaury started to lose again. Mid-late January (getting close to a year after surgery), I stabilized again around 161-164. After a few months at that weight, I dropped down under 160 pounds in late April (2018 - 14 months after TG). I stayed around 155-157 for about a year from July 2018 to August 2019 when I started gaining.

I was very happy with my weight in the 150s and 160s. When I first started gaining (just over 2 1/2 years after surgery) and went back to the 160s in October 2019, I was OK with that, but unfortunately, I kept gaining. In March 2021, I crossed over into the 170s which I was less OK with, but OK, then a year ago, in February 2023, I crossed into the 180s which is where I am now. It's still better than where I was before the surgery, but I would be happier at 10-20 pounds less than the 185 I am now. The probem is, I've never been good at losing weight (except by having at TG). My even bigger concern is continuing to gain weight. I really don't want to do that.

It's amazing that you can gain weight and be overweight without a stomach. Now to see if I can figure out a way and actually have the drive to lose weight so I don't end up a place I don't really want to be. If I don't lose, I will be OK with that, but if I cross over 190 or worse yet, over 200, I will not be OK with that. I need to reverse this trend.

6th Anniversary and Facebook Memories

6 years ago today, I was laying in a hospital bed at MD Anderson, totally out of it, having had my stomach removed the day before. Last year, around my 5th anniversary, I enjoyed all of the Facebook memories that popped up. There were posts from me as I was anticipating the surgery,from my husband giving updates during surgery and after, and then from me again when I was finally with it enough to post myself. I thought it would be helpful for me as I reflect back and for others who are contemplating the surgery and wonder what lies ahead to put those memories together here in one place.

Me - February 7, 2017, 8:04 AM

Two weeks from today I embark on the scariest journey of my life. When I was diagnosed with breast cancer in April 2015, I had genetic testing done. I tested positive for a very rare gene mutation, CDH1. While it is affiliated with breast cancer, it has an extremely high correlation with Hereditary Diffuse Gastric Cancer, cancer that forms in the lining of your stomach and is undetectable until stage 4 or 5 and it is too late. The only recommended course of treatment is to have a Prophylactic Total Gastrectomy, ie have your stomach removed as a preventive measure. After much research and agonizing, I have decided to have this surgery completed at MD Anderson in Houston on February 21. I appreciate your prayers for a smooth surgery, uneventful and swift recovery and for a lifetime of learning to live a normal life without a stomach, it can and has been done.

Me - February 18, 2017, 8:11 AM

Sitting in our condo on Padre Island, looking out over the Gulf of Mexico. Flew down to Houston on Wednesday. Had pre-op appointments at MD Anderson on Thursday, Came down to Padre Island/Corpus Christi for the weekend. Will return to Houston on Monday and hope to have surgery on Tuesday. Right now things are uncertain. Started having what I thought were allergy symptoms late Monday, was really bad Tuesday and Wednesday, making the flight miserable. Hoped it was allergies and the allergens wouldn't be present in Texas. Am better, but still congested and coughing. Definitely not the flu but likely a cold and if I don't get this whipped in the next 3 days, it may delay surgery They have this thing about you being healthy and being able to breathe going into surgery.

Me - February 20, 2017, 6:12 PM

The good news is I think I am feeling well enough that surgery will happen tomorrow. The bad news is I think I am feeling well enough that surgery will happen tomorrow. Thank you to everyone for your continued prayers. We report to the MD Anderson OR tomorrow at 5:15am. Surgery should begin around 7:30am.

Keith Stokes (my husband) - February 21, 2017, 7:17 AM

Linda just went back to surgery. The first update will be at 10, then every 2 hours.

Keith - February 21, 2017, 10:57 AM

About 40 minutes ago, I was told the surgery was complete and the doctor would see me soon. Still waiting.

Keith - February 21, 2017, 2:51 PM

Just saw the surgeon. She will be starting to wake in about 20 minutes and I may be able to see her in about an hour and a half. He said that all went well. Nothing looked bad but the type of pathology they will do will take about a week.

Keith - February 22, 2017, 8:51 PM

Linda's heart rate is rapid, but it isn't bothering her beyond the annoying alarms. We moved floors so they can monitor telemetry continuously. They took x-rays and blood for tests. The heart rate has not responded to drugs so far.

Linda still sleeps as much as they will let her, but I told her of the KU victory.

Keith - February 23, 2017, 1:25 PM

Linda's heart rate has behaved today.

On her most recent walk, she took 2 of the very short laps for the first time. She has fewer tubes and is more comfortable.

Keith - February 24, 2017, 12:37 PM

Linda is progressing and will try to walk and sit up more today.

She is now permitted a tiny amount of clear liquid and hasn't wanted more.

She has tulips from her sister in law and appreciates them, but there is no need for others. There is little room and we probably have at least one more room change ahead.

Keith - February 25, 2017, 9:40 PM

Progress is very slow. Linda still sleeps often, but was up for 5 short walks today and would take more, but for the hassles of being in the hospital. The doctors seem to think that her progress is normal.

This was the second day of liquid diet. The quantity permitted is very small, but Linda does not appear to mind the quantity. I think she will move to soft food sometime tomorrow.

Me - February 27, 2017, 5:58 PM

Thank you to everyone for the continued prayers and concern. It's hard to believe it's been almost a week since surgery. It's been an adventure. Surgery went well and as expected. I've had some issues with temporary high heart rates and low oxygen levels, but nothing has been severe and we continue to work on getting it all under control. Had nothing to eat or drink Tuesday, Wednesday, or Thursday. Friday and Saturday was on a clear liquid diet of 240cc every 8 hours. That's not very much. Was moved to mechanical soft diet on Sunday. Was frustrated over the weekend because even though I was given the go ahead to eat, had no direction as to what I should really be doing since the dietitians don't work over the weekend, made even more complicated because the heart issues had me being on the telemetry floor instead of the normal floor I would have been on with this type of surgery where the nurses understood a little better what surgery I had done and what my needs were.

Today has been much better as I've got direction from a dietitian, got switched to a post gastric surgery diet that I was supposed to be on yesterday instead of the one I was on, and got up and walked a lot. Even went to the beauty shop and had my hair washed.Yesterday I was getting mixed signals on everything, including walking. They are talking that I could be released from the hospital as early as tomorrow. We'll see. Will then still be in Houston for at least a few days before returning to KC.

Me - February 28, 2017, 3:23 PM

Got out of hospital this morning. Am at hotel (connected to hospital). Will visit doctor and nutritionist in office on Thursday to evaluate if we come home Saturday or if it's an additional week.

Me - March 1, 2017, 11:41 AM

Yesterday was an adventure on so many levels!

I got released from the hospital a little after 11:00, beginning the adventure of figuring out how to live and eat without a stomach...on my own! I'm supposed to eat something every 2-3 hours, so it was basically time to eat. 6 pages of post-op diet guidelines in hand, we explored all the food options at the hotel, including a small store and a "grab-and-go". Settled on a few chunks of watermelon and some cheddar cheese. Then headed to the nearest grocery store. Was hoping Keith could push me in a wheelchair, but they only had scooters. If you've never used one of those things before, they are an adventure in and of themselves. Added to it, the grocery store was in the midst of a major remodel and had boxes and stuff all over the store as they were reshelving and such. It was an obstacle course to navigate through. With diet guidelines still in hand, we read labels and compared items like I've never done before, It probably took us an hour in the store and we spent less that $50. Spent the afternoon trying to consume something every two hours. Had trouble keeping much of it down. Had not had trouble with this in the hospital. Reevaluated early evening using the food diary I'd been keeping all day and realized the solid foods were staying down, but liquids were causing more problems. Water seemed to be fine, but not really anything else. They encourage protein shakes and such to fill gaps between meals. I was trying them and some other beverages to keep hydrated, but that part just wasn't going well. I think I was pushing myself too hard and trying to do too much. I've backed off and am doing much better.

The adventure last night was trying to sleep. I found the bed at the hotel EXTREMELY uncomfortable! It is super soft and I just couldn't sleep. Tried moving to chair in the middle of the night, but it wasn't a chair designed for sleeping. Finally woke Keith and traded sides of the bed and slept a little better, but not much. Am exploring other options today.

Me - March 2, 2017, 8:50 AM

Had a bed board under the mattress last night. Slept much better! Follow-up with doctors today. Will know in a few hours if we get to return to KC soon.

Me - March 2, 2017, 6:54 PM

March 2, 2007 - It was about 9:20am when I got the call that changed my life forever. That's the day my husband and the father of my two wonderful children, Jesi Lipp and Mary Clow, died. We've been through so much since then. 4 graduations, 3 weddings, 1 divorce, and so much more. I love my children so much. It is hard to be away from them today. I want to wrap my arms around them, but I can't because here I am on March 2, 2017 embarking on another journey that will change my life forever. I had the follow-up with the doctor and nutritionist today. He can't decide whether to let me go home on Saturday or not. A couple of the blood counts are not quite where he would like for them to be. Will have another blood test tomorrow and then decide. So much uncertainty, so much unknown about this future without a stomach. So much like 10 years ago when I didn't know how I was going to keep going, but knew I had to. For myself and for my children. I now also have a wonderful husband and son-in-law, and ex-son-in-law. They have all played such an important role also. Thank you to everyone who has helped us get through the last 10 years and who will be along on the journey for the next 10.

Me - March 3, 2017, 3:47 PM

I GET TO GO HOME TOMORROW!!!

Me - March 3, 2017, 7:53 PM

After eating every "meal" since being released from the hospital in the hotel room or at the "grab-and-go" at the hotel, we tried the hotel restaurant last night. Keith ordered an entre and I ate just a very few bites of his meal. With success then, we decided to venture out tonight and do the same thing at a real restaurant. It went well. Feeling good about this. Wasn't expecting to do so only 3 days after being released from the hospital. It was nice for Keith to be able to have something other than hotel/hospital food.

Me - March 4, 2017, 1:55 PM

GOOD TO BE HOME!

Me - March 9, 2017, 9:30 PM

I'm supposed to walk 6 times a day. I just walked all the way around Rose's pond, without stopping, for the first time since surgery. It's getting cold and windy out there....I think that gave me extra motivation.

Colonoscopy

A week ago today, I had a colonoscopy, the third one I've had, the first one post-gastrectomy. The prep for colonoscopies is never fun, but I was even more nervous about this one. I was concerned about being able to drink the amount of liquid required and being able to tolerate the amount of sugar that is common in prep.

My first colonoscopy was in 2012. At that time, they said I didn't need another one for 7-10 years, but when I was diagnosed with CDH1 in 2015, my doctor ordered a colonoscopy and endoscopy because of the mutation. Protocol was to do 30 biopsies, the gastroenterologist did 3. He apparently missed the whole point of doing the endoscopy! A few years later, I received a letter that he was quitting his practice. I wouldn't have used him again anyway, so it didn't matter. Because they found polyps during that colonoscopy in 2015, I was supposed to have the next one in 5-7 years.

I decided I had put it off as long as I should and I needed to go ahead and get it done, even though it made me anxious. I explained my anxiety to my primary care physician and she recommended a gastroenterologist that she thought would be good and suggested I have a consult with him before scheduling the procedure.

I was pleased when I visited with Dr. Alsop in April. He had looked at my chart, knew about the gastrectomy and CDH1 and went through the various types of prep that can be done and suggested using Suprep which is a split prep. You do part of it the night before and part of it the morning of. That seemed like it would address some of my concerns regarding the volume of liquid. The biggest down side was having to get up to do the morning prep 6 hours before the procedure. They only do them in the morning, so I wanted the last possible time of arriving at 10:30 for a 11:30 procedure. Between that and the fact that this doctor is only at the location nearest me one day a week, the procedure was scheduled over 3 months out, but I was in no hurry.

Suprep is a prescription. It has two 6 oz bottles. You do the typical clear liquids the day before and then at 3:00, pour one bottle into a provided cup and fill it with water to the 16 oz line. It took me at least 20 minutes to get that down because of the nasty taste. But then you follow it with two 16 oz glasses of water that you are supposed to drink within one hour after drinking the Suprep mixture. I had no problem getting them down within the hour.

I had to go to three stores to get the clear liquids I wanted. You can't do red, orange, or purple. The first grocery store had no popsicles that weren't red, orange, or purple. I got lemon Jello (I was going to do lime, but they didn't have any). The instructions said I could have liquid Boost or Ensure (no substitutions) until 3:00. I don't usually like the premade protein drinks, but thought I should probably give it a try to get some protein in my system. The grocery store didn't have either, but the drug store had several different ones. I ended up getting Boost Women which I had never had before. I chose it because it only had 4 grams of sugar. It had 15 grams of protein. That was a much lower sugar count than most of the protein drinks. I had one in the morning for breakfast and another around lunch time. I don't recall now for sure, but I think I ended up having 3 of them before 3:00. They actually don't taste bad at all. I may get them again sometime. At the second grocery store, I found Halo lime popsicles. Not only are they not red, orange, or purple, but they only have 5 grams of sugar and taste pretty good. Add to that my regular iced tea that I always drink anyway, and I was set for my clear liquid diet. Thursday was not near as difficult as I had feared it would be.

I did have one time in the middle of the night that I threw up a little. I don't know what caused it. It was long enough after the prep that I wasn't concerned about it affecting it. I had also bought some apple juice which I didn't use on Thursday. I did have a little bit then, just to help soothe my throat. I'm not a morning person, so getting up at 5am to do the second half of the prep wasn't fun. But I again managed to get the Suprep down, this time taking closer to 30 minutes and followed it up with the two glasses of water with no problems. Not being able to have anything to drink after that was somewhat of a struggle as I am always drinking between meals to stay hydrated, that 5 hours between prep and the procedure was a long time to not have anything to drink, but I managed.

The best news of all was that I didn't have any polyps or other abnormalities so I don't have to have another colonoscopy for 10 years! But I now know that when I have one, I'll be OK and I will be scheduling it with Dr. Alsop again (hopefully, he's still around).

5th Anniversary

Today is my 5th TGversary. I had my stomach removed 5 years ago today.

It's been awhile since I've posted. I post less when I am doing great. 5 years seems like such a major milestone. I definitely wanted to post.

5 years ago I had so much fear and anxiety. I had no idea what my new life was going to be like. 5 years later, I can say life is good. It's actually been so much better than I could have ever anticipated. I won't lie and say it hasn't been without its challenges, but I have found a new normal...which is really close to the old normal. If someone meets me today, they have no idea I don't have a stomach. I do all of the things I did before.

I recently became a grandmother for the first time. My granddaughter will think it's normal for her grandma to not have a stomach, she won't know any differently. I'm so glad I will be around to enjoy her. And I am even more delighted that she will not have to worry about this horrible gene mutation. Her mother tested negative. My other daughter tested positive, but it unlikely to have biological children. So this is the end of the line. I don't have to worry about passing on the CDH1 gene mutation to my descendants. That is the best news of all!

Let's Talk Dessert

 Let’s talk dessert. Valentine’s Day seems like a good day to do that.

 Leading up to my gastrectomy there were so many uncertainties. No one could provide a list of foods you would and would not be able to eat after surgery as it varied person to person. Dessert was one of the biggest unknowns. Having no idea whether I would ever be able to eat sweets again, I tried to make up for it the months before surgery, having dessert with virtually every meal. I figured if I wasn’t going to be able to eat them again, I was definitely going to enjoy them now and I didn’t care how much weight I gained. I was going to quickly lose it anyway.

 I am thrilled that I can still eat dessert. It’s often just a few bites, but I still enjoy sweets. I get to enjoy the wonderful taste and am usually satisfied with just a few bites, but sometimes it’s nice to be able to have a whole dessert. A couple of years ago, I made a favorite dessert for a time we were having some friends over. It’s one I’ve made for years. I made a couple of variations to make it better for me, but was still surprised when I find myself eating the whole thing. Usually my body tells me when to stop, but it didn’t. I wondered if I was going to regret it later, but I didn’t. I’ve now made it several times, and I’m almost always able to eat a whole slice of my Frozen Strawberry Yogurt Pie. It’s quick and simple to make: mix together one 8 oz. tub of thawed cool whip, 3 8 oz. containers Greek strawberry yogurt, and 1 14 oz. container of sliced frozen strawberries. Spoon into a graham cracker crust and freeze. Most people enjoy it best if thawed for awhile before serving, although I also enjoy it frozen. The only changes I’ve made from the original recipe is substituting regular yogurt for Greek yogurt and using unsweetened strawberries instead of sweetened strawberries.

 I don’t usually worry about grams of protein or calories or anything, but I have tried to calculate for those that do. The counts will vary a little based upon the brand of Greek yogurt, etc., but cutting the pie into 8 slices, each slice is approximately 240 calories, 16 grams of sugar, and 6 grams of protein.

 Having discovered that I can eat a whole slice of this pie, it got me curious if there were similar ones that I could eat as well.  I found one that I modified a little, but also enjoy: Cream cheese chocolate Peanut Butter Pie. Combine 8 oz. thawed Cool Whip, 2 8 oz. packages cream cheese, 1 cup peanut butter, 1/2 cup chocolate chips, and 1/2 cup peanut butter chips. Spoon into a chocolate cookie pie crust. Refrigerate. If cut into 8 slices, each slice is approximately 700 calories, 32 grams of sugar and 15 grams of protein. This one does have more calories and more sugar, but also more protein. Since it is quite a bit richer, I usually actually cut it into 12 slices. I can usually eat 1/12. I often can’t eat 1/8.

I continue to look for other desserts with high protein and low sugar, but these are definitely the best I have found so far. The great thing is that as well as me getting to enjoy a whole dessert, my friends and family like them too.

 Happy Valentines Day!

CDH1 and COVID-19

2020 has been a year of graduations, not the high school and college graduation ceremonies that have been canceled, postponed, or made virtual, but leaving behind all things related to my cancer…except those that can’t be left behind (like not having a stomach).

This whole journey started in April 2015 when I was diagnosed with breast cancer. That May I found out I was positive for CDH1.  I had a double mastectomy in June 2015 and then a total gastrectomy in February 2017. That’s the background info. Now to the graduations. I’ve already written about my follow-up at MD Anderson in January of this year. At that appointment, Dr. Mansfield said I didn’t need to come back and see him anymore, that I could be monitored annually by my primary physician. Graduation #1.

Next up was the oncologist in June.  I was actually hoping I could skip that appointment, but I’ve always been one that if a doctor wants to see me, I go. This was my third oncologist in five years. I was going to the same cancer center, but the previous two doctors had left for one reason or another. My breast cancer was ductal carcinoma hormone-receptive positive, so I was prescribed a hormone blocker, letrozole, for five years. I had always assumed that once the five years was up, I’d be done with the oncologist. Since five years would be in June and I had enough drugs to get me through till past then, I called the office and spoke with the nurse to see if I needed to bother keeping my appointment. My breast surgeon who I saw in April, and will continue to see, actually suggested this. The nurse checked with the oncologist and he said he still wanted to see me, so I went. I met my third oncologist, he didn’t do any bloodwork or anything, we just chatted, and he released me. I don’t need to follow-up with him anymore. I did like him, and I did appreciate something he said. He said he would still be my doctor and was still part of my medical team, even if I wasn’t seeing him and that if I ever needed him, feel free to give him a call. I don’t expect to need him, but I still appreciated that sentiment. Graduation #2.

The oncologist told me to finish the prescription I had and then stop taking the letrozole. Since I was receiving a 90 day mail order prescription, that actually lasted me quite awhile. I just finally took the last pill a week ago. Graduation #3. The only regular medication I now take are vitamins.

As well as documenting my CDH1 journey, I feel compelled at this time to document the COVID-19 journey that we are all on and this blog seems as good of place as any to do that. This isn’t so much for those reading it now but more for the memories later of what we went through and for future generations that will read about 2020 in history books. I’m sure you, like me, never believed that we would be living in a global pandemic.

March started out normal enough. My Kansas Jayhawks were ranked #1 and were most people’s favorite to be National Champions. We were Big 12 Conference Champions again (after ending the 14 year streak the previous year) and were looking forward to the Big 12 Conference tournament and the NCAA tournament.

My best friend from college had ancestors from Fredonia, Kansas, the same small town in southeast Kansas that my parents were originally from, that I’ve had family in for generations, and where I still have family living. We had talked since college about going down there and never had. The last time we were together, we had decided that we were going to do it over her spring break this year. She had information about where the farm was near Altoona, cemeteries in Altoona and Fredonia she wanted to visit, and then we were going to do research at the Wilson County Historical Society museum in Fredonia. She is a professor at the University of South Dakota and her spring break was the week of March 9. We decided to go down Tuesday morning and spend the night, coming back Wednesday afternoon.

We had a great time. It was fun to get away and spend time together. She learned some information about her ancestors. In doing the research, I also came across names in my family tree multiple times and the trip reignited the love of genealogy in me. It was a great trip all the way around, but the best part was just spending time together. Little did I know how soon and how much things were about to change.

 Before our trip there had been some news about this coronavirus that had started in China and there were a few cases in the US, especially in Seattle, California, and New York, but nothing close to the Midwest. As a Department Chair, my friend started receiving texts on Tuesday about being prepared for possible online learning after spring break. That was my first indication that maybe this was turning into something bigger than we had initially thought. Then, just before the first games in the Big 12 tournament Wednesday night, the Big 12 announced that the games starting on Thursday would proceed, but with no fans in attendance. Then on Thursday, just before the games were to begin, they canceled the tournament all together. Many other conferences did the same thing, some in the middle of a game. Later Thursday, the NCAA also canceled the NCAA tournament meaning the Jayhawks would not be able to compete for the National Championship they were favored to win. Disappointing for sure, but this was the reality check that this virus, now called COVID-19, was much bigger than we had realized. The World Health Organization declared it a pandemic on Wednesday and a national emergency was declared on Friday, March 13.

When I returned to work at the church on Thursday, everything went quickly into COVID-19 mode. At first things seemed normal, but that all started rapidly changing. Every hour was like a day with things changing so fast, including the changes in sports mentioned above. My email inbox started filling with articles about the coronavirus and how to prepare. We had a funeral scheduled for the following Monday. The family had come to town to meet with the pastor to make final plans. They ended up deciding to postpone the funeral as they had family traveling from Seattle and other areas more affected. They thought they would wait till June when it would all be behind us. (It is now August and we haven’t yet scheduled the funeral.) We had a youth group from Oklahoma planning on coming to Kansas City and staying at the church for a week of mission the following week. Early Thursday afternoon, I had an email they were still coming. By late afternoon, they had canceled. That’s how rapidly things were changing.

We still had in-person worship on Sunday, March 15, although some area churches didn’t. We did make modifications such as no Passing of the Peace, etc. Our attendance was half what a typical Sunday would be. By Monday, the decision had been made to cancel all in-person meetings, events, and worship at the church, so much of my time was spent getting that communicated to our members and other groups that use the building, as well as assisting with plans for online worship the following week. The original plan was to keep the church office open.

That changed over the weekend when Johnson County declared a Stay-at-Home order effective Tuesday, March 24, followed by the State of Kansas on March 30. We had one day in the office on Monday to prepare to work from home. I did occasionally go into the office to collect mail and other needed items as well as to do some essential work that couldn’t be done from home. That continued until May 11 when the Stay-at-Home order was lifted and the church office reopened.

When everything was being shut down in March, we thought it was all temporary and things would return to normal soon, at least by May or June. The more time went on, the more we discovered that life wasn’t returning to normal anytime soon. Things started reopening, not because anything was better, but because there was pressure to open the economy. We had to make adjustments and find the “new normal” – social distancing, wearing masks, all these were part of the new normal. No one knows when, or if, life will return to what we think of as normal.

While we couldn’t have in-person worship, we developed other ways to reach the congregation, mainly though email and social media. One of the things we did was send out a daily devotion via email and it was also posted on Facebook.

When I reflected on the devotion I would write, I realized life being uncertain and developing a “new normal” was something I was familiar with. When I was facing my gastrectomy a little over 3 years ago, life on the other side was very uncertain. I knew things would never be “normal” again and didn’t really know what the “new normal” would look like. Sounds a little like how many of us have felt the last 5 months. Life on the other side of COVID-19 is uncertain. We’re not sure that our life will ever be “normal” again and are wondering what the “new normal” will look like.

We returned to in-person worship on June 21. It has very little resemblance to worship before COVID-19. In the summer, we always have Worship in the Park, an 8:00am outdoor worship service. It has been the most popular worship service this year. It had 51 people the first week and has consistently had in the 30s or 40s, a significant increase over last year’s numbers. The two worship services in the sanctuary have each been having less than 20 people, that’s 1/3 to 1/4 the number pre-COVID. People are obviously more comfortable worshiping outside than inside.

The two sanctuary services are also live streamed. Congregational singing is not allowed at any of the worship services, the hymns are sung by a soloist or a small group of no more than 3. At the park, people are asked to allow at least 6 feet between parties and they usually allow even more. In the sanctuary, every other pew is roped off and families are spaced out. Many churches have made the news by being a place the virus has spread. We don’t want to make the news.

We are living in a time I never thought I would experience in my lifetime. I still have a hard time believing it, but here we are. We do what we can to be cautious and stay safe, while not being fearful. In his sermon last Sunday, our pastor talked about the difference between caution and fear. The scripture was Matthew 14:22-33, the story of Jesus walking on the water and how Peter got out of the boat with faith, but then started to sink when fear overcame him. We need to remember during this crazy time we find ourselves in that God always walks beside us and guides us, if only we let him.

We don’t know when this will all end, probably not till after there’s a vaccine, which could be a year yet. In the meantime, we try to figure out what the new normal is and to stay safe and healthy. That is my prayer for anyone reading this blog.

3rd Anniversary

Happy 3rd Total Gastrectomy Anniversary to me!

It was 3 years ago that I had my stomach removed and my life was forever changed....but not as much as I feared it would be.  Going into the surgery, I really had no idea what to expect.  I had talked to one person that had had the surgery, had read several blogs, and done other research online.  I hadn't yet found the CDH1 facebook group (which I would highly recommend to anyone with this gene mutation.)  One thing that I did learn from what I had read was that everyone's experience was unique.  What worked for one person didn't necessarily work for another one.  No one could give me a list of foods that I could and couldn't eat.  It would all be trial and error.  This was one of the scariest parts.  I didn't know if there were foods that I would never eat again.

I've been fortunate.  I don't know if it's because I had a great surgeon or because I did something right in my recovery or if I was just lucky, but I am in a better place than I ever dreamed I would be.  I didn't get here overnight, but I can now eat pretty much anything I want to.  There are some things I choose not to eat a lot of because I don't want to fill up on things such as salad, bread, etc.  I focus on protein. But I do eat the other things also.  The main thing that I really have to watch is sweets, but I do get to eat candy and dessert...just in small quantities.  That's one of the things I wasn't sure if I would ever eat again.  But when you only get to eat a few bites of dessert or one piece of candy, you actually cherish it and enjoy it more.  I'll post another blog about dessert and a couple of desserts I have found I can eat a whole piece of soon.

The other place I have made adjustments is in beverages.  I've always loved unsweetened iced tea and drank a lot of it.  Prior to gastrectomy, I would also drink Coke.  I've never liked Diet Coke, so I would drink the real thing.  I didn't try Coke for awhile after surgery because of the carbonation and the sugar.  When I finally did, I found I could tolerate it (in small quantities), but I didn't really enjoy it anymore.  So, I have pretty much stuck with the tea that I still love...and then I can enjoy other sweets more because I'm not wasting my sugar intake on a beverage.  I've also made an adjustment to the alcoholic beverages I prefer. My preferred drink used to be a fuzzy navel with orange juice and peach schnapps.  I have found that's now too sweet and have switched to wine more often.  I also drink hard cider, that's something I've enjoyed before and after surgery.  I don't drink much as without a stomach, the effects of alcohol are felt much sooner.

I've talked in this blog before about my weight loss.  I lost 85 pounds, going from 243 before surgery to 157 about 18 months later.  I stayed at that weight for about a year and then about 6 months ago, I started gaining weight.  I'm up to around 164 now.  As opposed to many people that have this surgery, being overweight, I saw the weight loss as a nice fringe benefit.  I was thrilled with my 157 weight and felt great about my body.  I'm still happy at 164, but really don't want to gain too much more.  If I keep gaining, I'll have to figure out what to do to stop it.  Losing weight is something I've never been able to do until the gastrectomy, so I'm not looking forward to that if it becomes a thing..but for now, I'm happy with where I am.

Many people find it hard to believe that you can live a good life without a stomach.  I'm here to tell you that you can.  I started this blog to hopefully help others faced with the same decisions I was.  When diagnosed with CDH1, I found so little information out there.  I found the blogs from other survivors to be so helpful.  If I an help someone else, that's what it's all about.

Goodbye Houston

We flew down to Houston on New Year's night for my follow-up with Dr. Mansfield at MD Anderson on January 2.  It was surreal walking into the room at the Rotary House, the hotel adjacent to MD Anderson.  We've stayed there for previous follow-up appointments, but I don't recall feeling the same way I felt this time.  Maybe it's just that I am doing so well, I feel so removed from when we were there nearly three years ago for my surgery.  I flashed back to then, being there the night before surgery and facing the fear and the unknown. I flashed back to being there recovering after surgery, not knowing what to do, not knowing how to begin life without a stomach, throwing up in the bathroom sink....it all came rushing back to me.  Keith had some of the same emotions as he commented that he saw me as more fragile in that space. 

We went over early on Thursday for my blood draw appointment to increase the likelihood of them actually having the results before my appointment.  Dr. Mansfield was also running behind so they had all the results except one at the beginning of the appointment and got that one before we were done.  I was within normal range on everything. My B12 count was normal, but at the low end of normal.  They suggested I increase my dosage to two sublingual tablets a day instead of just one.  They also recommended getting a bone density scan done as they like to do that around 3 years after total gastrectomy, which is coming up soon.  But that can be done in Kansas City with my primary care doctor.  I will also want to continue having blood work monitored annually, but that can all be done up here.  I'm done with follow-up visits to MD Anderson.

Four years ago I had never been to Houston.  Now, 9 visits later, it was time to say goodbye.

I was excited to learn that Dr. Mansfield and a team from MD Anderson is doing a research study to put together a CDH1 Gene Registry to track those with the gene mutation and their medical information, family history, etc.  Hopefully, through this research, they will be able to learn more and eventually people with the mutation will have more information and more options when determining whether or not to have a total gastrectomy.  One of the most frustrating things when I was first diagnosed was that there was very little information available.  I am thrilled to be a very small part of changing that.  With this study, they will continue to be updated on my medical history and be in touch with me yearly for up to 11 years, but there is still no need to return to MD Anderson for follow-up.

So, GOODBYE HOUSTON!