Wednesday, August 12, 2020

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.

Friday, February 21, 2020

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.

Sunday, January 5, 2020

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!

Sunday, August 18, 2019

Traveling without a Stomach


Many people ask how difficult it is to travel without a stomach.  It does take more planning than before, but is easily doable.  When flying in particular, I overpack food.  I not only have enough snacks for the anticipated flight time, but have plenty extra for potential delays, especially, if we were to get stranded on the plane with no access to airport food, I want to make sure I am prepared.  I pack protein bars, nuts, cheese, jerky, peanut butter filled pretzels…pack whatever your go to snack is.  The last two times I’ve flown, they have had you take any food out of your carry ons to be scanned separately.  I think the TSA agents, and other passengers, think I’m nuts when I keep pulling out more and more food, but no one has said anything yet.

At home, I often bring home leftovers when we eat out and then warm those up for my lunch the next day.  Unfortunately, this doesn’t work as well while traveling.  I try to order just a sandwich and eat the meat without the bread or just an appetizer or something so there is less waste, but I’ve also tried to get over it and if I throw away food, I throw away food, and not let it bother me.

Smoked trout dip with pita bread and carrots
Another option is what we did one day on Mackinac Island during this trip.  There are so many wonderful places to eat that instead of just doing lunch and dinner, and me doing my normal snacks in between, we spent one day just doing appetizers.  Starting a little after 11am, we went to a restaurant and shared an appetizer, then a couple of hours later, another appetizer, a couple of hours later, another, etc.  We had the last appetizers about 8pm.  I had less of a need for snacks in between and I don’t think we spent any more money than we would have if we had two bigger meals.

In just two days, most of the 10 oz. package of dried strawberries are gone.
One highlight of this trip to Northern Michigan was stopping at the General Store in Good Hart.  It may seem odd, but returning to this little store in this tiny town is something I’ve been looking forward to for a year.  A year ago when we were there, I purchased some dried strawberries.   I like dried fruit, but very seldom have I encountered dried strawberries.  These were wonderful!  And the fantastic thing is I could eat several at a time and they didn’t bother me.  I was eating them like candy.  But unlike actual candy where I can only have one, or maybe two pieces at a time, I can eat several of these at once, and I'm fine, even though cane sugar is the second listed ingredient (behind strawberries.)  If I eat more than one or two pieces of candy, watch out! Dumping is not fun.  But I can eat these dried strawberries by the handful.  Most every time I snack, I make sure to have protein, but once in awhile, it’s nice to eat something just for the pure enjoyment of it.  For a year, I’ve searched close to home and never found dried strawberries.  Thus, the trip to Good Hart, to stock up on dried strawberries, both to enjoy now while on vacation and to take home with us.  The packaging says they’re good till June 2020.  I don’t think they will last that long.

Friday, July 19, 2019

Lenexa UMC 150th Anniversary


Sunday, June 30, Lenexa United Methodist Church celebrated their 150th Anniversary, being founded in 1869.  This has been my church since 1983 and I have been on staff as Business Administrator since 2004.  As Business Administrator, I am the staff liaison to the Records & History Team who was responsible for planning the celebration weekend, giving me a major role in the planning and carrying out of the celebration.  Everything went really well and everyone seemed to have a great time.  We had many former pastors, descendants of former pastors, former members, and descendants of founding members come for the celebration.
In case the celebration wasn’t enough, I decided to write a book.  Actually, when I started, I didn’t know I was writing book.  I was just trying to put together the previous histories that had been written (all of which were just a few page handout), consolidate and expand them, and add pictures.  None of the previous histories had included pictures.  Next thing I knew, I was writing a book.  Methodism in Old Town Lenexa: The History of Lenexa United Methodist Church 1869-2019 ended up being a 200 page hardbound book with Table of Contents, Glossary, and Index with almost 300 pictures, and included bios of all 70 former pastors.  The previous histories had included very little, if anything, about the former pastors, they had mainly been a list of names and dates served.  I made them come to life.

Me presenting a copy of the book to the mayor.
The planning of the celebration and the writing of the book took over two years.  The amazing thing as I look back, and the reason I’m including it here, is that this whole thing culminated just over two years after I had my total gastrectomy.  My gastrectomy was on February 21, 2017.   I returned to work part-time six weeks later in early April.  As I look back, I’m not totally sure when I started compiling all the previous histories and information we had into a consolidated history to create a starting point, but I think it was either just before or just after surgery.  I actually think I may have started at home during recovery before returning to work part-time. You would think I would remember, but I don’t.  I didn’t return to full days until September.  Within a couple of months of doing that, I started working on a first draft of what would become the book, even though I didn’t know it was going to be a real published book at the time.

In retrospect, I’m just amazed that I pulled off this major event that took lots of time and effort on the heals of having major, major, surgery.  Not only can you lead a normal life after total gastrectomy, you can apparently go beyond normal and commit crazy amounts of time to a project.



Thursday, February 21, 2019

Two Year Anniversary

Two years ago today is when I had my stomach removed.  The past year has been a good year.  I'm in a good place.

Here's some highlights of the year:

We went to Mackinaw City, Michigan in September.  Mackinaw is my husband's hometown and he has a website devoted to the region mightymac.org.  One of the main purposes of the trip was to walk the Mackinac Bridge on Labor Day.  It is a 5 mile long suspension bridge connecting the upper and lower peninsula.  The entire walk ends up being about 6 miles.  I'm not someone who does much exercising and when I do go for a walk, walking a mile or two is pretty much all I do,  but I did the 6 miles with no difficulty.  I had also walked the bridge in 2011, but I had a stomach then, so it was totally different.  Last year we were there at the time of the bridge walk, but I did not walk; it was too close to surgery.  But this time I thought I could do it and I did. I did make a point of taking snacks and a water bottle with me.

Four days before the walk, we bicycled around Mackinac Island.  It is 8 miles around the perimeter of the island.  Here again, I don't bicycle.  I think the last time I had been on a bike was the last time we bicycled around the island which was four years ago.  There again, when I had a stomach.

I was a little nervous about both of these adventures, but I had no trouble with either of them.  My tag line when I posted the pictures on Facebook was "no stomach, no problem!"

In October, we made a trip to Maine to visit my brother-in-law and sister-in-law.  I had fun shopping at the LL Bean Flagship store in Freeport and the J Crew and Calvin Klein outlets in Kittery.  I might have went overboard on purchases, but on the other hand after losing 85 pounds, I still hadn't really replenished my wardrobe, so I had a good excuse.

Which brings me to my weight.  I have finally stabilized.  After losing 1-2 pounds per week for the first year, from my appointment at MD Anderson in January 2018 to my appointment in January 2019, I only lost 8 pounds.  And I think I lost 6 of those pounds as a pound a month in the first six months and just 2 pounds in the last six months, so I would call that pretty stable.  Because I was overweight going in, I feel really good about my weight at 157.

My follow-up appointment in January was a good appointment.  In general terms, all my blood work came back with good numbers.  My BUN number was a little high which could mean I have some dehydration.  It wasn't significant, just a little. They did suggest more water and/or less caffeine.  As I've mentioned before, iced tea is my go to drink and I don't really want to give it up.  What I've started doing is making two pitchers: one caffeinated and one decaf.  I drink the caffeinated during the day and the decaf in the evening.  I've never felt tea kept me up at night, but having decaf in the evening I figure is a good idea anyway.

My blood pressure was also a little low (99/67), not horrible, but not great.  If you recall, my blood pressure was a little high going into the surgery (ever since I got diagnosed with breast cancer and then CDH1) and I went into aFib after surgery, so they put me on Metoprolol tartrate.  The surgeon's speculation was that I may need to lower the dose, partially because of the weight loss.  I finally got around to calling the cardiologist today and although I'm due to go in March, they can't get me in until June.  But I talked to the nurse and we're going to go ahead and cut the dosage in half and see how I do.

Those two things were both really minor.  I continue to get an excellent report at my surgeon's visits because I am doing great!  I really am doing better than I ever expected and better than many of the people that have this surgery.  Dr. Mansfield said he wanted to see me again in a year, but after that, I would probably "graduate" and not have to come back any more.  That sound great to me!

Happy Two Year Anniversary To Me!







Sunday, July 22, 2018

Daily Food Routine

As I get further and further removed from my gastrectomy, I find myself posting less and less often.  I often think about posting, but don't make myself sit down and do it.  I commented recently, "I was too busy living life to write about it."  That's not necessarily a bad thing, but I'm going to try to make myself do better as I know it would be helpful to those who are going through the same things and others are just curious.

I thought it might be good to share my daily routine as far as food intake.  I am 17 months out from my surgery (and that's how I usually refer to it, "my surgery"; I've had various surgeries over the years, but this one is just "my surgery" and life is defined as before and after surgery, just like before and after children).  But anyway.....

Before surgery, I was never a big breakfast eater.  I would usually eat a granola bar on the way to work.  Now I emphasize protein every time I eat.  I don't count calories or count grams of protein, but I try to get protein with every meal and every snack...and it seems to be working.  Granola bars do not have very much protein, so they have went bye-bye.  They have been replaced with Kellogg's Special K Protein cereal for breakfast.  I have found that I like the Cinnamon Brown Sugar Crunch flavor straight out of the box. There are 7 grams of protein per 3/4 cup serving.  I've actually never measured how much I eat, but I'm guessing around a serving.  I carry it in a zip-lock bag and eat in on the way to work, usually finishing at work since I only have a 2 mile drive to work.  I often don't eat breakfast until close to 9:00 (I'm not a morning person) and I usually eat lunch at 11:30, so I often don't have a morning snack.  If I do have a morning snack, I like Atkins Peanut Butter Granola protein bars.  They have 16 grams of protein.  A lot of the snacks I eat later in the day, I don't like to eat in the morning; this is one of the few things I enjoy in the morning besides my cereal.

As I said before, I usually eat lunch around 11:30.  My lunch is, more often than not, leftovers that I bring to work and heat up in the microwave.  It includes some sort of meat, potato, and sometimes a vegetable.  It also includes unsweetened iced tea.  Before lunch, I drink water periodically, but then I  drink tea with lunch but not too much) and will continue drinking it all afternoon.

In the afternoon, I have several snacks. Using the criteria of eating every 3 hours, it would only be one snack, but instead I tend to eat 2 or 3 snacks during the afternoon, eating every hour or two.  At work, I keep a supply of cheddar cheese sticks, mozzarella string cheese, pretzels (that I eat with the string cheese) and protein bars. Protein bars vary a lot in the number of grams of protein.  For the most part, I have stopped buying the ones that are only 7-10 grams figuring I might as well eat one that's 20 instead.  I particularly like Pure Protein.  They are small bars (I never have problems finishing them which does sometimes happen with bigger bars), but have 20-21 grams of protein. Costco sells a variety pack with 21 bars of Chocolate Peanut Butter, Chewy Chocolate Chip and Chocolate Deluxe.  Others that I particularly like are Cliff Builder's Protein-Chocolate Mint or Chocolate Peanut Butter (20g), ProMax-Double Fudge Brownie (20g) and Balance Chocolate Mint Cookie Crunch (14g).  I also really like Atkins Caramel Chocolate Nut Roll Bar.  It's only 7 grams of protein, but I still buy it because it's almost like eating a candy bar.

I also always carry snacks in my purse.  I usually have peanut butter filled pretzel nuggets and nuts, either regular mixed nuts, peanuts or honey roasted peanuts.  Lately, I've been mainly doing honey roasted peanuts.  I didn't do them for quite some time, afraid that they would be too much sugar.  I don't know if I would have had troubles earlier, but I've had no problems now.  I stopped doing mixed nuts because I don't like cashews and I got tired of the number that were in the mixed nuts.

At home on weekends, as well as doing the above snacks, I do a variety of cheeses with crackers.  I'm so glad I don't have any dairy issues as I know some people do after TG as cheese is a big part of my snacking.

I eat a variety of things for supper.  There really isn't anything I won't eat, but grilled fish and chicken are my "go tos".  I also eat steak, hamburger, pork, etc.  We often go out to eat, which almost always means I will have leftovers for lunch the next day as American restaurants serve too much food.  If I fix my own dinner at home, I will often eat an entire frozen fish filet or chicken breast, partially because the serving size is smaller and partially because I don't fix as many side dishes.  If I need leftovers for lunch, I'll go ahead and fix an extra serving.

I had been having a smoothie almost every night as I found it did better than many other snacks in the evening.  My typical make your own smoothie is 2 ice cubes crushed in the blender, add some juice (strawberry watermelon or mango), 4 tablespoons whey protein powder, 1 container Greek yogurt (any flavor), frozen fruit (some combination of mangos, peaches, and berries) blended all together.  Just over the last few months, I have found myself having other snacks in the evenings and doing less smoothies, although I still like the smoothies too.  I particularly do a lot of the peanut better pretzels and honey roasted peanuts in the evening.

It's nice that I've pretty much fell into a routine and have a system, but at the same time, I'm not afraid to experiment and venture outside of it.  Occasionally, things don't go well, but more often than not, they do.

Sunday, April 8, 2018

Drinks, Sweets and Dumping

Dumping syndrome is a condition some people experience after a total (or partial) gastrectomy.  It is caused when food, especially sugar, moves into your small bowel too quickly.  Symptoms of dumping syndrome include nausea, vomiting, abdominal cramps, diarrhea, dizziness and rapid heart rate.

I have been very fortunate.  I have not experienced much dumping.  Actually, in my first year, I didn't have any severe dumping.  There might have been a few times that I had a little, but not really much at all.  I don't know if what I had would even be considered dumping as it was so minor.

Fear of dumping syndrome is one of the reasons I don't do a lot of sweets.  But I have built up to doing them more often, a little at a time, and haven't had any problems....until a couple of weeks ago.  It was the same day as my last post where I drank a whole can of Coke while watching the KU game that afternoon.  I was fine, no issues.  Then that night, I could tell I was going to have trouble getting to sleep, so I decided to have a mixed drink before going to bed.  My go to drink is a fuzzy navel (orange juice and peach schnapps).  Yes, it is sweet, but I've had it before, and I've been fine.  I actually didn't have any orange juice, but had mango juice from my Smoothies.  I've mixed mango juice with peach schnapps before and had no problems.  As I was having the drink this time, I could tell it was starting to bother me.  I didn't finish the drink and went on to bed.  As I was laying in bed, I started having abdominal cramps really bad.  I got up and went to the bathroom.  Went back to bed, still cramping.  I got up again.  This time I was successful in having a bowel movement.  Went back to bed, still cramping.  I was laying there, curled up, in a lot of pain.  Got up and went to the bathroom one more time.  This time I had loose bowels.  After that, I actually felt better.  I was finally able to go back to bed and settle down and eventually go to sleep.  I think that was dumping syndrome.  My first experience with it and I hope my last.  I really don't want to go through that again.

I haven't had my peach schnapps and orange or mango juice again yet since then.  Not sure how long I'll wait before giving it a try.  One of the frustrating things with all this is something that can be fine one day, isn't another day.  You never know.

I did have a celebration with dessert this Friday night.  We had some friends over to play bridge and I made a frozen strawberry yogurt pie (Cool Whip, frozen strawberries, and strawberry yogurt, poured into a graham cracker crust and frozen).  I made it one other time since surgery.  That time I was tempted to eat the whole slice, but made myself stop at half.  This time I made it with Greek yogurt instead of regular yogurt.  I figured adding the protein would make it better for me.  It was still yummy and I did eat the whole slice this time.  No dumping.  No regrets.  I felt totally fine afterward.

There are leftovers from the pie in the freezer.  I may just have to go have a slice....

Sunday, March 25, 2018

Have a Coke

I love iced tea (unsweetened!).  Always have.  Before TG, I was more likely to have iced tea with my meal than anything, but occasionally enjoyed a Coke...real Coke, don't like the aftertaste of diet.  After TG, iced tea has been my go to drink.  No sugar, no carbonation.  I like it, I have no issues. 

Before today, I had had 2 cokes in the last year.  Both times I had about half of a 12 oz. can.  I don't know if it's been all the Coke commercials which watching the NCAA tournament or what, but I decided I needed to have a Coke.  Partially, I wanted to have one at home so I would know if it was safe to have one while I was away from home.  If I'm at a party or something, iced tea isn't always an option.  I need to know if I can drink a whole Coke.  So this afternoon, while watching KU play Duke in an incredible game and advance to the Final 4, I had a Coke.  I drank the whole 12 oz.

Truthfully, it didn't taste all that great.  When you've got used to drinking drinks with no sugar, it just tastes sort of weird.  But I did OK.  My left side actually hurts a little.  Not a lot, but a little.  Maybe I should describe it more as just a little discomfort.  I actually have had this happen several times over the last few weeks after I eat.  I don't know what causes it.  It's not that bad.  I live with it.  It passes in a few minutes and I'm fine.

I'm still going to drink lots of iced tea.  That's not going to change.  But if I want to have a Coke or if iced tea isn't an option, I can have a Coke!

Tuesday, February 20, 2018

One Year!

It's been one year since I wrote these words:
I'm sitting here on the eve of my surgery. I'm freaking out. I can feel my heart rate accelerating. I try to take deep breaths to relax and stay calm. How did I get here? Am I really doing this? Am I really having my stomach removed in less than 12 hours? What will the rest of my life be like? There's no turning back. (View the whole post here)
I had no idea what the future would bring. I was scared, probably more scared than I've ever been in my life.  The year hasn't been easy, but in general times it hasn't been as bad as I feared.  I had set myself up for the worst.  There have been bad times, but the good times have far outweighed the bad times.  I've been blessed.  Some people have a rougher time than I have.  I don't understand the difference.  I don't feel like I have done anything in particular, but I had a great surgeon (Dr. Mansfield at MD Anderson), and I do try to listen to my body, eat every 2-3 hours (sometimes only an hour), eat protein every time I eat and keep hydrated by drinking mostly unsweetened iced tea, water, and smoothies.  I have a smoothie that I make myself (I don't like the store bought ones and they don't always settle well) almost every night as I found it often settles better in the evening than food does. 

My smoothie "recipe" is simple: ice, 100% fruit juice and/or milk (I originally used all juice, but have recently been using a combination of juice and milk), whey protein powder, Greek yogurt, frozen fruit.  Blend.

The amount of food I can eat in one setting keeps increasing.  Sometimes, like tonight, my plate looks like a real person, eating a real meal.  This was my supper tonight. I ate everything on my plate.  When eating frozen fish fillets prepared at home (this one was salmon), I can pretty consistently eat the entire thing.  Potatoes are a staple for me, these are sliced and coated with olive oil and garlic seasoning and then baked in the oven, along with the salmon which was preseasoned.  I only started doing corn a couple of months ago, but it has been doing OK.  I haven't really encountered anything I can't eat at all, but there are things I didn't try for months and corn was one of them.  I still don't do a lot of it or salad or bread, but I can eat any of them.  I mainly just don't want to fill up on foods like bread or lettuce that don't supply me with protein or many other nutrients.

I wish I could say that it was always easy and there weren't surprises, but that's simply not true.  Sometimes after eating there's a few minutes that I don't feel good.  I can't really describe it, but things just feel a little out of balance.  It usually isn't severe.  It seldom lasts long.  It doesn't happen all the time.  I just live with it.  It's not a big deal.  I don't know if this is something that will be part of the rest of my life or not.  I do know it happens less often than it did 2 months ago when it was happening less than it was 6 months ago.  So I'm guessing it may totally go away at some point or it may always be there occasionally.  Only time will tell.

It had been a long time since something hadn't set so badly that it came back up.  That was until last night.  I had some peanut butter filled pretzel nuggets for a snack.  Everything seemed fine at first, then I started not to feel well.  I don't want to be too graphic but I want to tell it like it is for those who might be anticipating or recovering from a TG.  It took two trips to the bathroom with it coming out of both ends before I felt better.  But once it was over, I was fine.  It would be easy to say that I just shouldn't eat the peanut butter pretzels, but I had some both Friday night and Saturday night and everything was fine.  I didn't feel the least bit sick then.  This is one of the mysteries of life post total gastrectomy.  You never know what is going to bother you one day that didn't bother you another day.

My weight seems to be stabilizing.  I've been right around 163 (162.7-163.4) for 6 weeks now, down 80 pounds from the 243 I weighed going into surgery.  It is a weight I am very happy with and think I look good at.  I will be thrilled if this is a weight that I maintain and won't be concerned about trying to gain weight.  Actually, wouldn't want to gain any more than 10 pounds or so and if I end up losing another 10 pounds that would be OK too.  I'm basically where I want to be.

Here's to one year of life without a stomach.  Hoping and praying the second year is even more uneventful, which I am expecting it will be.

Saturday, January 13, 2018

Almost 1 year follow-up

When I saw Dr. Mansfield in June, he wanted to see me again in 6 months, which would have been December, but December is too busy so I scheduled the appointment for January.  That means it is just shy of one year since my total gastrectomy on February 21, 2017. 

As I said in an earlier post, I was a little concerned that I would get yelled out for losing too much weight as he had stressed needing to have the weight stabilize when I saw him in June and it didn't start to until November and then I started losing again (although at a slower rate) in December.

But that wasn't the case at all.  The nurse actually commented about how much I had lost since my June appointment, but that I looked really good and that it appeared to be a healthy weight loss.  Dr. Manfield's assistant reviewed all of the blood work and everything basically looked good.  The only one that was a little low was the prealbumin protein (I think) which is better than it was in June, but still a little low, but not of major concern.  B-12 levels and everything else were good.  The only other thing she mentioned was so insignificant that she wasn't going to mention it, but of course, she mentioned it telling us she wasn't going to mention it and that was hydration.

When the assistant looked at my incision, I made some comment about how pleased I am with how the scar looks and she agreed and said it was one of the best she has seen.  I don't think I can take credit for that, but I like it.

When Dr, Mansfield came in, he didn't even look at the lab results like he normally does.  He too was happy with where I am weight wise and said that as long as it has slowed down and I don't lose it too fast, if I lose another 15 pounds or so (over several months), that would be OK.  It was nice to hear that we are on the same page which I didn't necessarily feel in June.  I'm not looking to lose another 15 pounds, I'm very happy with where I currently am. but if it happens, it would be OK.

The report was good enough that he doesn't want to see me for another year.  So I'm good with that!

Wednesday, January 10, 2018

New Clothes for Christmas

Men's, size Small
I've lost enough weight that I definitely need more new clothes. I thought about asking for some for Christmas, but didn't really know sizes and it's also hard to tell other people what to buy for you unless you have something specific. I decided that I would be safe with asking for sports apparel for KU, Pitt State or Royals. That's the type of thing that I'm not as particular on the specifics and having some new t-shirts and sweatshirts that fit well would be nice. I went to Kansas Sampler, our local team sports apparel store, and tried on some random tops to be able to specify sizes. I knew there was still a chance something wouldn't fit and would have to be returned, but at least that would give a closer starting point.

Men's, size Medium
I decided I needed a size small in men's t-shirts, a size medium in men's sweatshirts, and a size large in any ladies cut shirts.  There were a couple of items that I really liked so I asked for them specifically, but mainly I was open to anything.  Most of what I have is men's/unisex large or extra-large, so everything would be significantly smaller than what I have.
Men's, size Medium

I ended up getting five shirts total.  A nice variety of clothing and sizes, but everything fit.  The size differences are crazy, but that's how it is.  It's fun to have new clothes that I look good in.





Ladies cut, size Large
 Everyone comments on how skinny I am.  I tell them it's all relative.  I have always hidden my weight well.  I didn't look like I weighed 243 pounds before the surgery and I don't look like I weigh 165 pounds now.  I get told "well, you're tall", but size 14 jeans has nothing to do with height and isn't normally concerned skinny.  But anyway, I'm happy with where I am.  I feel good about what I weigh and how I look.  I am slightly concerned about how to tell my body to stop losing weight.  I started to stabilize around 170 pounds, but then I started losing again in December.  I think it may be because of eating too much junk food.  Most people gain weight in December from eating cookies, candy and party mix, but I think I lost weight because of it.  I didn't eat a lot, but ate more of that kind of stuff than usual and as a result probably didn't have as much good, healthy snacks with protein.  I'm hoping that with the holidays behind us, I'll do better.
Ladies cut, size Large

As I type this, I'm actually on an airplane headed down to MD Anderson for a follow-up appointment tomorrow.  I have a feeling Dr. Mansfield won't be happy with my continued weight loss, we'll see.

Saturday, December 2, 2017

Thanksgiving

Being the first major traditional stuffing yourself holiday since my total gastrectomy, I was a little anxious about how Thanksgiving would go.  I was pretty pleased.

I slept in, had breakfast about 9:30 and then got making apple pie.  I had made pumpkin and sour cream raisin (my first attempt...my husband's favorite, so I thought I would give it a try) the night before.  During the pie making, there was one issue after another, but survived not finding the mixer bowl I was looking for, the meringue not stiffening, the pie crust falling apart trying to put it in the pie plate, a collapsed crust, and whatever else went wrong.

We left the house a little after noon to head to the home of my step-sister-in-law's mother (did you follow that one) where we would share Thanksgiving Dinner with about 30 "family".  Having been about 2 1/2 hours since I had ate breakfast and knowing it would be at least an hour and potentially a couple of hours, before we had dinner, I took along a protein bar to eat as a snack on the way.  I laughed about eating a snack on the way to Thanksgiving dinner, but knew that if it got much over 3 hours between me eating, I could potentially have issues and wanted to avoid that.

We ate around 1:30.  I put small portions of turkey, ham, mashed potatoes and gravy, stuffing, green bean casserole, corn and a roll on my plate.  I've got pretty good about judging how much I can eat, but I thought there was a good chance I had put too much on my plate this time, but I hadn't.  I ate every bit of it.  I sat at the table and visited for a little bit and then eventually decided I was able to have some pie.  I cut a little bit off of a piece of apple and a piece of pumpkin and had probably about 3 bites of each.  It was delicious (if I don't say so myself) and satisfying.  I never felt bloated or sick or anything.  I had succeeded in limiting myself to just the right amount.

I continued to feel great the rest of the day.  I would say that's a successful Thanksgiving!

Sunday, November 19, 2017

Random Ramblings

I'm way behind.  It has been 3 months since I've posted.  I've intended on posting several times over the last 3 months.  I've thought about what I would say several times.  I've just never actually sit down and typed anything.  So, I am doing that, today, now!

By August, I had lost enough weight (about 55 pounds) that some of my clothes didn't work anymore, or at least looked baggy.  I was thinking about going shopping for some new clothes, but then discovered I had some in the upstairs closet that I had "outgrown" prior to surgery, but hadn't gotten rid of.  I was enjoying my newfound wardrobe.

The first of September, we went to Mackinaw City, Michigan (my husband's hometown) for vacation.  My daughter and son-in-law went with us.  It was my son-in-law's first trip to the area and my biggest trip post-TG.  About 2 days before we left, I decided that I really should buy new jeans before we went.  The newfound wardrobe had included dress pants, but not jeans.  At home, I was still wearing a lot of shorts, but in northern Michigan, it would be cooler and I would want jeans.  While I was still able to cinch my jeans tight enough with a belt to wear around home and to work where I'm sitting at a desk most of the day, they wouldn't be as comfortable when we were walking around most of the day.  It took 3 stores, but I finally found some jeans that fit.  I had went from a size 18W down to a 14, the same size I had worn for much of my early adult life, but not anytime recently.  Having jeans that fit felt wonderful.  At that point, I didn't want to go back to wearing ones that were loose.

If you've ever been to Mackinaw City or Mackinac Island, you know the area is known for fudge.  There are fudge shops every other store.  The same company will even have two shops within a block of each other.  I learned while we were there that I can still eat fudge, caramels and other candy that is just too hard to resist.  I just have to pace myself.  I ate a lot of sweets on the trip, but I would have one piece and then an hour or two later have another piece, etc.  I never got sick by eating too much.

View of the Mackinac Bridge Walk from our hotel room
Part of the point of going to Mackinac over Labor Day weekend is for the Mackinac Bridge Walk. It's the one day you can walk across the 5 mile long suspension bridge.  Keith and I did it in 2011, the first time he had done it since he was a kid.  Mary and Nicholas wanted to do the walk, so the 3 of them did.  I decided that I wasn't up for that long of a walk and especially not for leaving the hotel at 6am, so I stayed behind and took pictures.  Mary ended up live streaming the walk on Keith's facebook page.  If you're interested, you can watch it at https://www.facebook.com/210773555600457/videos/1752567588087705/?fref=mentions and/or view Keith's pictures from the walk at http://www.mightymac.org/2017mackinacbridgewalk/index.htm

Mary and I went horseback riding on Mackinac Island.  The first horseback riding I've done in years.  I was definitely sore after the hour long ride, but glad I did it.











About the end of September or early October, I suddenly realized I was working full days regularly.  Because I have great flexibility in my job in regards to what time I get in and what time I leave, it had sneaked up on me and I had been doing it for a week or two before I really realized it.  I was also going for a walk or doing other activities in the evening, after putting in a full day, without being totally exhausted.  So, it took 7 months, but I was pretty close to "fully recovered"...whatever that means.  That doesn't mean there aren't still moments when I don't feel good, but in general, things are really good.

Before my surgery, Keith and I played tennis for exercise.  We hadn't played since my surgery, but finally played 3 or 4 times in October.  Then life got busy and crazy (normal) and the weather got cooler and we hadn't been playing or walking or doing any exercise.  I made a conscience decision to try to do better and this weekend has been nicer and we went for a walk on Friday and then played tennis today.

As I'm now down about 70 pounds. I am finding more and more of my old clothes that don't work anymore.  I'm enjoying buying new, although I still haven't done a ton yet because even though my weight loss has slowed down, it hasn't stopped and I don't want to spend a lot of money of clothes that I may not be able to wear in another 6 months or a year.

I'm looking forward to Thanksgiving this week.  This will be another test for me as I try to not put too much on my plate and not over eat.  We'll see how it goes.......


Sunday, August 20, 2017

Being Sick

I experienced a first since my total gastrectomy in February this week…..being sick.  This sickness had nothing to do with my stomach, or lack there of, nothing to do with something I ate, it was just old fashioned being sick.  Last Saturday, we celebrated my birthday a couple of days early.  Late in the evening, I started not feeling great with a little of a sore throat.  Sunday morning I still didn’t feel well.  Throat was still sore, felt weak and my body was aching all over.  I wouldn’t have went to church, but had a meeting afterward, so went.  During worship, I found it necessary to sit down during a couple of hymns which of course made people around me notice.  And of course, if I’m not feeling well, it’s because of my surgery, there’s no other options, or at least so people think. 

I didn’t go to work on Monday, my birthday.  I slept all day, not getting out of bed for any length of time until 4:30.  Because I slept all day Monday, I didn’t get the doctor called until Tuesday and they couldn’t see me until Wednesday.    They suggested I could go to Urgent Care on Tuesday, but first of all, I didn’t feel like sitting and waiting for what sometimes can be a long time at Urgent Care and secondly, I didn’t want to have to explain the whole “no-stomach” thing to a doctor who didn’t know me.  I actually hadn’t seen my regular physician since my surgery, so I sort of wanted to see her anyway.  When I went to the doctor on Wednesday, she determined it was strep throat and put me on antibiotics. 

I managed to go into the office for about an hour or hour and a half tops on Tuesday, Wednesday and Thursday, but that’s all I had energy for.  Friday, I made it up to about 3 ½ hours.  In case you’re every wondering, it’s hard to get a week’s worth of work done at an hour a day.

My throat was so sore all week that it hurt to swallow.  Since it hurt to swallow, I couldn’t make myself eat much.  I survived the week on yogurt and Smoothies was pretty much it.  I ate a little other food, but not much.  I lost about 8 pounds. Originally, after surgery, I was losing 1-2 pounds a week.  That was starting to slow down and my weight was beginning to stabilize.  I’m wondering now if I will gain back the 8 pounds I lost this week being sick or if it’s a new threshold.  Only time will tell. 

When I did start to feel like eating more at the end of the week, at first I found it difficult to consume very large quantities.  It was sort of like the expanding that I had done over the last few months of being able to eat more, took two steps back.  But after a day or so, I seemed to be close to where I had left off a week ago.


I’m curious to see where I am a week from now.