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.

Saturday, August 5, 2017

Sleeping in

I slept till 10:30 this morning.  It felt good.  I actually didn't get myself out of bed until 10:45.  It was a rainy morning, so a great day for sleeping in.

I really hope this will help me not be as tired as I've been.  I've felt more of a normal, I need more sleep tired recently instead of the I don't have any energy tired that I was feeling a few weeks/months ago.  I didn't mention yesterday the late nights that I've had (besides the one associated with work) which I'm sure is part of the issue.  Last weekend, I ended up being up till midnight or later for one reason or another Friday, Saturday and Sunday.  Then Thursday night this week, we went to the Royals game and that was another late night.  I think my body was rebelling and reminding me it's not fully recovered, even though I'm doing so much better.

Friday, August 4, 2017

Gaining Strength and Energy

For a week, I've been going to post about gaining more strength and energy, but I keep being too tired to post when I think about it.  What does that mean?  I think it probably says more about my motivation and the other things that I have going on, but it just seem funny.

The week before this was a crazy week at work.  It's another one of those weeks that reminds me that I'm doing a lot better, just because I survived it.  We had a major storm Saturday night, July 22.  Sunday morning while I was still in bed, about 7:30, my husband brings me my phone because I had just received two texts.  They were from our youth director who was at the church early to head with the young adults to Colorado.  She was letting us know that the power was out at church.

Even though I really didn't want to, because I'm still not doing mornings well, I got up and started making arrangements for our worship to go on without power.  We have an early worship service at 8am at a local park so our pastors would already or soon be there.  Worship in the sanctuary is at 9am (contemporary) and 10:30am (traditional).  I started emailing the pastors, musicians and media techs.  At the 9am service, we only have words to the songs on the screen, so my daughter who creates the media emailed me the lyrics so I could print on our home computer a few copies to be shared.  I got to the church a little after 8:30, handed off the lyrics and then started my self-appointed task of getting light into the bathrooms as they have no windows.  There was enough light in the sanctuary and all classrooms that I wasn't concerned about them.  After I distributed the LED lanterns, flashlights and battery pillar candles to the bathrooms, I remembered that we had a box of old funeral fans that we had used for a Camp Meeting reenactment we did a few years ago.  By this time, the 9am service had started, but when I delivered them to the ushers, they said they would distribute them and they were very welcomed.

Before I went in Monday morning, I had already heard from our pastor that we were still without power.  I still went in for a couple of hours.  Since we actually had "half power" and some things were trying to be on, I spent most of the time going around and unplugging electronics and turning off power strips.  The office was by far the hottest place in the building, so I tried to avoid it.  I had a few things I wanted to do in the History Room in the basement, so this seemed like a good time to do them.  I took a few things home and spent a couple of hours working from home in the afternoon.

A little after 8pm, I heard that the power was back on so I headed back to the church to try to get the computers and everything up and running so that things would be functioning when other staff members got there Tuesday morning which would likely be before me....remember I still don't do mornings well.  I couldn't get the server up and in texting my volunteer IT person, he offered to come help, so I said "please."  I was willing to stay as long as he was because if it didn't get fixed Monday night, I would likely be on my own on Tuesday.  Well, we got the computers going before we left, leaving the church just before 11:30pm.  I put in a normal 7 1/4 hours on Monday, just at odd times.

Being so late Monday night, I obviously do not get up early Tuesday morning.  It was about 11:30 before I got in.  However, I had a meeting Tuesday night and worked straight through, so it was still an 8 hour day.  Tuesday was spent calling technicians for all the things that didn't restart on their own after the power outage such as copiers, elevator, A/C, alarm that had a ground fault, etc.  Wednesday was another 7 1/4 hour day dealing with all the technicians that had been called Tuesday.

Thursday started with a phone call from our pastor waking me up at 8am.  It had poured Wednesday night and she had been up since 3:30am helping her husband bail water out of their basement and wasn't going to be in.  Our office volunteer that gets in a 9am doesn't have a key, so I told the pastor I would get myself together and be there to let the volunteer in.  Shortly after I got to the church, I was informed that the Rescue Assistance system in the Education Building was making a very loud, annoying, static noise, so I called the Alarm company again.  I then discovered that if you hold down the intercom button, it stopped making noise, so we duct taped the button down.  A few minutes later, we discovered the basement had got water in so I helped move the wooden furniture and sent emails asking for people to come help with the water.

About 12:30, we were finally ready to heat up the leftovers we had brought for lunch when the power went out.  It wasn't storming at this point.  Don't know what happened.  We waited a few minutes to verify it wasn't a quick flash and was going to come back on, then decided to go out to lunch.  Fortunately, when we got back from lunch, we had power, but didn't have internet.  I was going to be out of the office on Friday, so had several things I still needed to get done before I left on Thursday, including Payroll.  I was making plans for doing what I needed to do at church, but then having to finish things at home with internet when my second call to the phone company actually accomplished getting the internet back, so I was able to finish everything at the church.  However, it was 7pm before I got done what I needed to get done, so it was a 9 hour day.

Friday was an all-day meeting in Topeka.  I drove myself so I could go see my dad afterward.  It was a full week!  As I said before, I know I'm better because as tired as I was, I was not drop dead tired and survived.  I even managed to walk some of the evenings.

This week has been a little more normal, even though not quite everything is back together, but we're getting close.  I'm still having trouble getting up in the morning, so I'm not getting in until close to 10 and therefore, only managing  6 1/2 - 7 hours.  I have walked almost every night this week and 3 of the last 4 times I've walked, I've walked 4 laps around the pond at the local park.  Each lap is 545 meters, so I've been walking 1 1/3 miles.

When I get caught up in life and don't realize how tired I am until afterwards, I know I'm getting closer to "normal."

Friday, July 21, 2017

5 Month Post-Op

My total gastrectomy was 5 months ago today.  It doesn't really seem like that long ago.  The other day, I caught myself telling someone it was almost 4 months and then realized it was almost 5 months.  Life has pretty much returned to "normal"...or at least a new normal.  I'm still hoping that my energy level continues to increase, and I think it will, but I could live with where I am now if I had to.

I wrote about our long weekend travels the first of July.  Last weekend, we had another travel weekend.  One of Keith's best friends got married in Sioux City, Iowa.  Since we would be so close to South Dakota and Keith has never been, he wanted to go up there and take some pictures.  When I looked at a map, I realized part of South Dakota we would be close to was Vermillion, where my best friend from college lives.  So, we left KC a little after 4:00 on Thursday, drove to Vermillion, stopping for supper along the way.  We got there between 9:30 and 10:00.  Friday morning, we picked up my friend around 9:30 and went to Devil's Gulch, Palisades State Park and the falls at Sioux Falls.  We were then to Sioux City for a pre-wedding dinner Friday night.  After dinner, we played games and lost track of time, so didn't get back to the motel until midnight.  Saturday morning, I slept in until about 9:30.  We then headed back to Vermillion and then to Yankton to see the bridge and eat lunch.  We didn't have a lot of time since we got a late start and wanted to be back to Sioux City around 2:30 to get ready for the 4:30 wedding.  It was a small wedding, just close family and friends.  After the wedding, we had dinner at a restaurant and then back to the house for more games (requested by the bride's teen daughter).  We had another late night, slept in Sunday morning and hit the road for home.  At St. Joseph, Missouri, we jogged over to Kansas, hitting a couple of things in Atchison and Leavenworth for kansastravel.org.

It was a full weekend.  I was tired, but did OK for the most part.  I did have a minor episode at Palisades State Park.  We had walked down a short trail to see one of the rock formations.  I got hot and tired and not feeling well, so decided to head back to the car.  Before I could get very far, things quickly got worse.  Back in high school and college, I had some problems with black out spells.  Doctors were never able to determine what caused them.  They've continued occasionally in adult life, but not very often (like every few years).  Well, as I was trying to head to the car, I felt like I was going to black out, I needed a bathroom and I thought I was going to throw up.  I had to sit down on a rock, bench, whatever, 2 or 3 times on the way to the parking lot.  I tried to throw up, but nothing would come up.  When I wasn't going to black out so I could walk, I walked quickly so I could get to the primitive toilets which were fortunately in the parking lot. I got through it and made it to the toilets just in time, but there was a moment I was starting to panic and wondering how I was going to get off the trail and back to the car.  I was cautious the rest of the day and didn't do much walking.

After two short weeks at work, I had a full week this week.  Monday and Tuesday I had evening meetings at 6:00 and 6:15, so worked straight through.  I was at the church for 10 hours Monday and 9 1/2 hours Tuesday.  I was obviously tired at the end of the day both days, but I wasn't drop-dead tired.  That actually told me that I'm doing a lot better.  Just a few weeks ago, I would not have been functioning at the end of a 10 hour day.  I ended up putting in basically 39 hours this week, the most, by far, I have done since surgery.

Sunday, July 9, 2017

Long 4th of July weekend

My husband, Keith, has a website, kansastravel.org, where he goes around the state of Kansas and takes pictures and posts about everything from museums to waterfalls to zoos to locally owned restaurants and all sorts of stuff. Basically, his belief is every community, regardless how small, has something. In the 9 years we have been together, we have traveled Kansas together. Often times he has taken me to things I've never seen or heard of as a lifelong Kansan. Sometimes I can fill him in on details he doesn't know because I grew up here.

With the focus on my surgery, we obviously haven't done much exploring Kansas this year. Living on the east side of the state, it is particularly hard to get to the western edge very often. You pretty much need a 3 day weekend or more. Since the 4th was on a Tuesday, he suggested we take Monday off and make it a 4 day weekend and head west. I was reluctant at first because I still wasn't sure about my energy level, but ended up deciding to go ahead as long as he was willing to accept my criteria: don't push me too hard and don't force me to get up too early in the morning. Keith usually does all the driving so I figured I should be able to easily relax in the car. Then of course I knew meals would be a little bit of challenge because the restaurants would be chosen based on what he wanted to try for his website, not what I thought would have the best options for me, but I'm getting pretty good about finding something that works wherever we are.

When Keith figured out where he wanted to have supper Friday night and how far west we wanted to get based on July 4 weekend events, it was decided we should leave work early to hit the road around 4pm on Friday. It was closer to 4:30 before we got gone. I had packed snacks (string cheese, pretzels, nuts and protein bars). I hadn't had my afternoon snack yet, so ate string cheese and pretzels as we left Kansas City. We also stopped to pick up a $1 iced tea at McDonalds. Keith likes me to read to him in the car while we're traveling, but I don't like to read novels, so after finishing my snack, I read to him from “100 Things Kansas Fans Should Know & Do Before They Die” by Ken Davis.

We reached our dinner destination, Three One One in Abilene, just before 6:30pm. Since surgery, I have established a general rule for myself that I try to keep my restaurant meals under $10 unless it is something that I plan on taking home and getting several other meals out of. I knew that for this trip, I would be forced to make exceptions to that rule. One of the things this restaurant is known for is grilled Mahi-Mahi, so I ordered the Mahi-Mahi sandwich. It came with two large filets on a bun and a side of house-made chips. I ate most of one filet, leaving behind the bun. I was also tempted by the slice of very ripe, very good tomato. I've only had a little raw tomato, but the skin peeled off easily and I ate most of it. It was very delicious. I only had a few of the chips. My husband had a hamburger and ate my second Mahi-Mahi filet. Since we're experiencing this for the website, and the restaurant is known for their key lime pie, we had to try a piece. I only ate one or two bites, but it was pretty good.

After dinner, we drove on to WaKeeney where we spent the night. There was a cattle drive as part of July 4 festivities near Goodland at 10am Mountain Time Saturday morning. Keith really wanted to do it, thus the reason for pushing so far Friday night. Before leaving home, I had agreed to being on the road by 9am Central Time Saturday morning. That had me getting up a little earlier than I would prefer, but I was willing to do it for one day of our weekend. The motel had a very basic breakfast, but nothing really appealed to me and the only thing with protein was hard boiled eggs which I don't like. I had brought with me Special K Protein cereal for just an occasion and had my cereal with their milk for breakfast.

On the way to Goodland, I read the first chapter of my mother's 1936 Kansas History textbook, Four Centuries in Kansas. We reached Goodland for the cattle drive in plenty of time. We sat in a field in lawn chairs while a woman in period dress explained about life in the 1800s and what we were getting ready to see. Some of the information she shared seemed to be taken from the book I had been reading such as stories about the millions of buffalo that once roamed the land. About 6 cowboys brought the cattle in to the water hole near where we were sitting. The lead cowboy was in character as he talked about bringing the cattle through on their way to Wyoming and the hardships along the way. After the reenactment, we watched a real cattle drive down the street as they moved the cattle from this field to another one. There was a herd of buffalo in the field next to where they were moving the cattle which we also got to photograph.  

After the cattle drive, we went on into Goodland for lunch at the Butterfly Cafe at the local Goodland airport. I got a grilled chicken sandwich with a salad and mashed potatoes. This was my first try at a salad, but I have had a little bit of tomato and lettuce on a sandwich, so decided I was good to give it a try. I only had a few bites, but did OK. Again, I just ate the grilled chicken, not the bread. I can eat bread OK, but just don't want to fill up on it. This was another place known for their pie, so we got a slice of apple pie to share. I had 2 or 3 bites.

After lunch, we went to a local bar to find the owner to talk to him about a gas station he had restored that we had stumbled across on a previous trip. When we asked about him at the bar we were told he was grilling in the kitchen, but “stick your head in” and see if he can talk to you. So Keith stood in the kitchen doorway interviewing Rod as he kept cooking. I waited at the bar and ended up having a very nice chat with a family sitting nearby. One of the women at the table was best friends with Rod's wife and she ended up texting her to come down so we could see the inside of a house Rod had restored. Less than 5 minutes later, the wife was at the bar, relieving her husband in the kitchen, so he could go show us the house. It was an amazing house that had originally been a doctor's home and office. He had done lots of work inside and outside, as well as to the horse barn behind the house. In the process, he had discovered all sorts of the doctor's equipment and other medical supplies, which he has nicely on display within the house. Fully furnished, if he didn't find it in the house, he filled in with other antiques he already owned. It was nicer than many museums, but was a passion of love and is not open to the public except by invitation.

From here we drove to Lake Scott StatePark, photographing anything of interest along the way, including small towns, murals, abandoned buildings, landscapes, animals, whatever. We drove around the lake taking more photographs and then on down to Scott City. We had a few minutes before our dinner reservation so were driving around when we noticed an old car at the gas pumps of another restored gas station we had photographed on a previous trip. There were two men talking and we thought there was a good chance one was the owner. Sure enough, after one left, the other man went inside, so we stopped and Keith was able to get more information about the station.

Majestic Theater Restaurant, Scott City, Kansas
We had supper at the Majestic Theater Restaurant, a very elegant restaurant in an old theater. The menu was somewhat limited, but I ordered grilled shrimp (was way over my $10 limit with this meal). It came with a salad and bread. I was enjoying my salad with delicious blue cheese dressing, along with the bread, but decided I needed to stop or I wouldn't be able to have any of the main meal. I don't know if I ate too much or if there was too long of a break before the entree came or what, but by the time my meal came, I wasn't feeling great. I took one bite of the grilled shrimp and was chewing and chewing, but couldn't make myself swallow. I was finally able to swallow that one bite, but knew that was a sign I shouldn't eat anymore. I felt bad not eating any of this nice meal at a nice restaurant. At the end of the meal, I just politely explained to the server that the food was great, but I wasn't feeling well, and asked for a box. I didn't go into any detail about why I couldn't eat more.

After supper, we drove on down to Garden City where we spent the night. Keith let me sleep in Sunday morning. I got up just in time to do the breakfast buffet which was included in the room, but was a full buffet instead of the continental breakfast at many motels. I had a few breakfast potatoes, scrambled eggs, 1 slice of bacon and a few chunks of watermelon. Before we left town, we took various photos in Garden City, including at the cemetery and of the Courthouse. Then it was on to Ingalls Cafe in Ingalls, Kansas (a town of 300) for lunch. I ordered the fried catfish dinner. It again came with salad. I only had a couple of bites this time, but made Keith eat most of it. Since he was only getting a sandwich, his didn't come with salad. I got two huge catfish filets, mashed potatoes and gravy, corn and a roll. I don't think I ate any of the corn and only a bite of the roll. I ate most of one filet, eating out the center and leaving the more crispy edge behind, as well as a little potatoes.

Liberty Garden 9-11 Memorial, Dodge City, Kansas
From Ingalls we headed on through Cimarron and ultimately to Dodge City continuing to photograph whatever struck our fancy along the way, including another courthouse, churches, an old hotel and more. In Dodge City, we toured the Mueller-Schmidt House, a stone home built in 1881, and the Liberty Garden, a memorial to 9-11, among other sites. We went from Dodge City up through Ness City and other small towns, eventually returning to WaKenney Along the way, we photographed more courthouses, churches, murals and other buildings.

Supper was at the Western Kansas Saloon and Grill, housed in a former hardware store, in WaKenney. I had the pork loin special with new potatoes and green beans. There were 3 pork loins, I ate most of one. Keith sampled part of one and had the rest, along with my grilled shrimp from the previous night, for breakfast the next morning. I only ate a little bit of the new potatoes and green beans. For one, the potatoes were very large for new potatoes and not quite as done as I would have preferred.

We stayed at the same motel that we had stayed at Friday night. The continental breakfast was only open till 9am, but Keith brought a bowl of milk to the room so I could add my protein cereal and didn't have to get up that early. Monday is the one day the local historical society museum is not open, but Keith had arranged for someone to meet us there at 10am. He gave me the option of sleeping even later, but I did get up to go. I didn't allow quite enough time to get ready, and we were coming back to the room to check out after our appointment, so I waited to eat breakfast after our visit to the museum. When I took the milk out of the refrigerator, I found the top had frozen over (as had the water bottles in the refrigerator...I think the temperature was turned down a little too low). I tried stirring the milk, but couldn't get rid of the ice crystals, so gave up in frustration. Thought about going across the street to the convenience store to buy milk, but it was nearing the 11am checkout and I didn't want to try to eat a bowl of cereal in the car. I started eating the dry cereal out of the box and discovered it actually didn't taste that bad, so ate that for breakfast in the car.

We headed toward Hays for lunch at Al'sChickenette, stopping along the way in Ellis for photos at Memorial Park, Mount Hope Cemetery, and an old truss bridge. For lunch, Keith ordered a gizzard appetizer and we shared a 2 piece chicken dinner that came with two sides, so we got one for me and one for Keith. It was another place known for pies, so I had a couple of bites of peach pie.

After lunch, we photographed a church in Catharine and the remains of a church near Emmeram. We tried to photograph two multi-arch stone bridges, but couldn't find one, even though we followed exact directions, and gave up on the other when we found the road being grated and couldn't figure out how we would get around the grater.

We made it to Abilene about 5:00 and checked into our Bed & Breakfast. I found it difficult to answer the question about allergies or food restrictions. I went ahead and told my story, received the usual shocked response, and we agreed on smaller portions, protein and not much sweets and agreement that she wouldn't be offended if I didn't eat something or very much. I had prepared myself to be up front about my surgery as breakfast at a B & B is totally different than at a standard motel. I hadn't thought about the fact that also meant getting up earlier as we were given the choice between eating at 8:30 or 9:00. I quickly chose 9 and silently wished it were 9:30 or 10.

We had been in the room for less than 15 minutes when my cell phone rang. It was my oldest daughter, Jesi, “I'm about to ruin your vacation.” Turns out she was in the ER with appendicitis. She had went to her primary care doctor who had run a test, diagnosed appendicitis and sent her to the hospital emergency room. Since she hadn't seen the ER doctor and we were over 2 hours away, we decided to wait till we had more information before deciding to head home. We went to supper in Detroit, Kansas. I had a grilled cheese and bacon sandwich with french fries. I didn't care for the fries, but really enjoyed the sandwich and ate most of it. After supper, we went on to Chapman to do some more photography of a cemetery and church memorial.  
St. Patrick's Mission Church Memorial, Chapman, Kansas


By this time, Jesi still didn't know whether they were going to do surgery Monday night or Tuesday morning (on the 4th), but I decided I wanted to go ahead and head home. Basically if they did surgery Monday night, we would be there when she got out of surgery. If they did it Tuesday morning, we would be there before surgery. If we waited to head home Tuesday morning, we wouldn't be there either way. So we headed back to the B & B, picked up our stuff, and headed home. We drove straight to the hospital, getting there just before 11:00. We visited for awhile and got home about midnight. The next morning, we headed to the hospital about 9:00, having been told surgery would be between 10:00 and 10:30, it ended up not being until after 11:30, but all went well. Not the ending to the trip we were expecting, but that's how life as a mother goes. Because we started at the far western part of the state and were working our way back east, the parts that we intended to do on Tuesday that we didn't get to do, can easily be done in a normal weekend trip, and we didn't really miss out on that much.

Sunday, June 18, 2017

Follow-up

I had a follow-up appointment last Thursday at MD Anderson with Dr. Mansfield and the nutritionist. This was the second trip to Houston since returning home March 4, after surgery on February 21. I got another good report. There were a few minor issues/concerns:
  1. Even though I would like to continue the weight loss, Dr. Mansfield is slightly concerned and would like for it to stabilize or at least slow down. I lost 15 pounds the first 2 weeks, then have lost about 2 pounds a week since. As I went into this overweight, I am good with that and honestly, would like to lose another 30 pounds or so. He's OK with that, but just wants to make sure it doesn't get out of hand.
  2. My protein levels are a little low; not bad but a little less than what he would prefer. So I need to figure out how to increase my daily protein intake. I make sure I have protein with every meal and snack, but I'm not doing as good a job as I was in the beginning with having protein between food (such as a protein smoothie) and I often skip an evening snack. I need to get better about an afternoon and/or evening protein drink, as well as an evening snack. Sometimes we don't eat supper until 7:00 or so and then I don't want to eat again before going to bed. I need to get better about eating something.
  3. My hemoglobin count is at the low end of normal. The recommendation was to make sure that my gummie multivitamins contain iron. I'm going to have to get back with him on that one as I have looked at every bottle of gummie multivitamins in two stores and none of them contain iron. So I'll have to see if he has any other recommendations.
  4. It is time to start taking Vitamin B12. It can't be absorbed through the multivitamin or through normal pills, so I have two choices: a daily tablet dissolved under my tongue or a monthly injection. I chose to go with the daily tablet for now. I can always switch to the injections later if I decide I don't like the tablet.
  5. The surgeon really stressed I should do more walking so I don't get muscle atrophy and such. I was doing a good job of walking almost every evening before I went back to work. Since I've went back to work, I use up all of my energy during the day, so I don't feel like walking at night. He encouraged me to push myself a little and that the more I do, the more I will feel like doing. It will be hard, but I'm going to try to start walking again, especially evenings we don't have anything else going on. If we do have evening activities, I will still find it difficult to push myself that much, at least for now.
  6. The night before my appointment, I noticed some spots on my tongue, like the top coating was off. I thought there was a chance it was some sort of nutrient deficiency, so I asked about it. The doctor immediately identified it as thrush. He gave me 3 different prescriptions to aggressively treat it, so I guess I'm glad I noticed before my appointment.


I don't have to go back to Houston for 6 months. He wants to check on me by phone a 4-6 week intervals in between, but I'm glad we get a break from a return trip. And that will put it in winter in Kansas, so a trip to Houston then may be pretty appealing.

Sunday, May 21, 2017

3 months Post op

I had my total gastrectomy 3 months ago today.  Before surgery, I had basically set myself up to be sick for 3 months.  Well, those 3 months are over and while I'm not 100%, I have done so much better than I ever anticipated.  I really only had a couple of days after I got out of the hospital that were pretty bad.  I've been able to do lots of things that I didn't expect to be able to do so soon, whether eating out, attending a KU basketball game, attending a Royals baseball game, attending graduation parties...it's all been good.

I am starting to get up a little earlier, but that means I'm getting up at 9:00 instead of 10:00 or 10:30.  I'm very aware most people wouldn't call that early.  I get to work around 10:30 and then come home for lunch and then work till 4:30 or 5:00.  So I'm still only getting about 5 hours in a day.  At that point, I'm tired and ready to come home and still have little energy for any evening activities.

Eating is going pretty well.  There are still things that I don't eat and some things that have worked one day, but not worked another, but overall things are good.  For the first two months, breakfast was usually a scrambled egg and a toasted mini bagel or english muffin.  I really didn't like eggs every day and was looking for some different options, but wanted something with protein.  I finally found Special K Protein Cereal and it has done pretty good.  It's high in protein, but low in sugar.  Too many cereals are too high in sugar.  I sometimes add banana slices to it (about 1/3 of a banana) to add more nutrients.  Having a little variety is nice.  Since I'm still eating breakfast pretty late, I don't have a snack before lunch  For lunch, I usually come home and fix something quickly.  That may be warming up leftovers from a previous meal, grilling chicken breast or fish and microwaving a small potato or something else simple.  For an afternoon snack I may have cheese and crackers, string cheese and pretzels, a protein bar, greek yogurt or a smoothie (with protein).  Then supper is usually a more traditional meal whether at home or a restaurant.  It usually includes meat, potato and vegetable, but it varies  Sometimes it looks a lot like lunch.  Depending what time I eat supper, I may or may not have a snack in the evening.  I don't like to eat too late.  I do often do a smoothie in the evening.  Originally, it was almost every not, but it's not any more.  As I eat more at supper, I have reduced how often I have something in the evening.

I have started eating sweets.  I limit myself to just 2 or 3 bites of cake or cookie or whatever it is.  Likewise, I'll have just a small piece of candy.  A had a fun-size Babe Ruth candy bar a week ago and it was wonderful!

As far as beverages, I drink quite a bit of water and iced tea.  I was a big tea drinker before surgery and still am.  You can only have a small amount while eating, so need to drink more between meals.  I've heard some people say they have trouble with water or tea.  I have not had any troubles.  Some people say they have to drink them at room temperature.  I have always liked my drinks ice cold and continue to drink them that way with no problem.  I don't know what the difference is.  I have never been a diet soda drinker, but enjoy regular Coke.  I have had two Cokes since surgery.  Each time I had about half of a can and drank it over 2-3 hours.  It was fine and nice for a change, but in general terms, I'll stick to my tea which doesn't have sugar.

As far as alcohol, the only drink I've tried so far is a fuzzy navel (peach Schnapps and orange juice).  I've done fine with it and sometimes enjoy it for a change in the evening.

I'm making progress.  Still a long way to go, but getting there!

Tuesday, May 2, 2017

10 Weeks Post Op - Update on return to work

It's been 10 weeks since my surgery and over 2 weeks since I posted an update.  I keep thinking I need to post, but then not doing it.  This is my 5th week back at work.  I'm still part-time, but gradually moving up to more hours.  I started working about 3 hours per day.  Because I find mornings more difficult and have been sleeping late ever since surgery, I opted for working afternoons.  I started going into the office around 1:00 or 1:30 and working till 4:00-4:30.  I try to listen to my body and not overdo it.  One day I might only work 2 1/2 hours and then another day work 4. After the first 3 weeks, I was frustrated because it felt like I wasn't working any more hours at the end of the 3 weeks then I had at the beginning of the 3 weeks.  I checked my time sheet and found that I had actually increased my hours during those 3 weeks.  Averaging the number of hours worked each day, I found the first week I had averaged 3 hours 10 minutes, the second week 3 hours 25 minutes and the third week 3 hours 40 minutes.  Not a giant increase, but I was working about 15 minutes more each week.  I felt better, but still wondered how long it was going to take me to build to full-time.  At this pace, it would be August before I was doing 8 hour days.

I also found that I had no energy in the evening after work (part of the reason I haven't done a good job of updating this blog).  Before I went back to work, I had more energy to go for a walk or do other activities in the evening.  Since I returned to work, I was done for the day when I got home.  If there was something I wanted to do in the evening, I had to make a point of getting home earlier, so I would have a couple of hours of down time before trying to go out.

Last week, I continued my 15 minute increase and started the week at 4 hours a day.  Because of some special circumstances, I forced myself to work a little over 5 hours on Thursday and did OK with it, so I tried 5 hours again on Friday.  Yesterday, I had a doctor's appointment so only got in 4 hours and got home about 4:00.  But the good news is I had more energy in the evening and was actually able to go for a walk with my husband.  Today I put in closer to 5 hours and had some family over for dinner tonight to see a friend that was in town.  I didn't get home early enough to have enough of a break before going to the grocery store and cooking dinner, so I'm tired.

But I am starting to think that full-time may get here within the next month or so.  We'll see.....