Wednesday, February 21, 2024

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.

Wednesday, February 22, 2023

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.

Friday, July 29, 2022

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).

Monday, February 21, 2022

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!





Sunday, February 14, 2021

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!

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.