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.

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.

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!

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.

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!

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.

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.......