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.....

Sunday, April 16, 2017

Happy Easter!

Today was the first major holiday since my surgery and in my family Easter is a major holiday.  Started the weekend yesterday with my daughters and I making the annual Bunny cake that Easter dinner just isn't complete without.

While making the bunny cake, I couldn't resist doing the typical of eating a few jelly beans and one piece of pull-n-peel Twizzlers.  My second experience of having a little bit of candy and I did totally fine.  Later in the evening, just a few minutes before bed, I had a whole pull-n-peel.  That was probably a mistake.  I didn't feel horrible, but I didn't feel great.  I need to remember candy in very small quantities, but sometimes it's so hard!

After the bunny cake making yesterday, we went to a Royals baseball game with friends.  That worked out fine.  It was an evening game.  We left the house at 5:15.  I ate supper before we left.  I took snacks with me to the game and ate string cheese and pretzels earlier in the game and protein bites later in the game.  The peanut butter and chocolate protein bites are a new snack that I just purchased at the grocery store on Friday.  I was looking for something easily portable, but with protein.  They seem to fit the bill.  The game was made much easier with the parking pass for the lot right next to the stadium.  I had been concerned about having to walk a long way, but that was a nonissue.

After church today we went to my step-sister-in-law's sister's house for dinner (did you follow that?) where we had the normal gathering of "family".  A wonderful group of about 25 where everyone there is related to someone there, but no one there is related to everyone there.

Many of those there were ones that had gathered at a restaurant 3 nights before we left to MD Anderson for surgery to say goodbye.  Most of which I had not seen since returning home from surgery.  It was good to see everyone.  There were obviously lot's of questions about how I'm doing and specific questions about how I'm coping as this is something that no one really understands.

Being the first big dinner since surgery and not being in my own home, I was cautious about the things I put on my plate.  I mainly wanted foods that I've had before or at least I felt were pretty safe.  We had the traditional Easter ham.  I actually hadn't tried ham yet, but I've had pork chop and pork ribs, so I felt pretty safe with the ham.  I actually enjoyed the ham a lot.  It was very tasty.  Seemed to settle very fine and I enjoyed it being a meat that I haven't been eating all the time, mainly chicken or fish.  I enjoy chicken and fish, but I'm growing tired of them.  I enjoyed the ham so much that I asked to bring some leftovers home and will probably get 5 or 6 meals out of what I brought home.

I also had a little mashed potatoes (although I didn't eat too many since they were skin on and I found it difficult to separate the skin), cheesy potatoes, German potato salad (we like potatoes in this family), macaroni and cheese, asparagus and part of a roll.  I obviously didn't have much of the various potatoes or macaroni and cheese, but enjoyed most everything I ate.

I haven't had a chance to try many desserts yet because I don't want to experiment at a restaurant and I don't want to make a whole dessert at home to just sample a small amount and my husband doesn't eat much dessert as he is diabetic.  I decided today was an opportunity to be able to sample multiple desserts and brought home some of my bunny cake, a piece of a German cake, and a sugar cookie.  I'm obviously not going to try them all at once, but I can try a little of each one on different days and see how it goes.  That should give me a pretty good understanding of my ability to do desserts.  Tonight, just a few minutes ago, I tried a small piece of the bunny cake.  It was good.  I think I'm going to be OK.  I've been fortunate so far and haven't experienced dumping syndrome.  I hope to keep it that way.

I hope everyone had a wonderful Easter if that is a holiday you celebrate.  I know it was a good Easter for me.

Sunday, April 9, 2017

Experimenting with New Foods

A week ago when I had my follow-up with the surgeon and nutritionist at MD Anderson, the nutritionist wanted me to start trying new things.  Basically all of those things she originally told me to avoid, like high fat foods, sweets, etc., she was now encouraging me to try.  It's a weird feeling to be setting yourself up to get sick, but the thing is, if you never try it, you'll never know whether you can have it or not and since all of this varies from person to person, you have to give everything a try.  So, for the past week, I have been trying new foods with mixed success.

First of all, a week ago Friday, I had ice cream.  I just had a small bowl of Bunny Tracks.  It was fine.  Didn't really feel any affects of it at all.  I had another bowl a few days later.  It came back up.  Why was it fine one day and not another?  I have no idea, but I do think it is sometimes more about my body on a given day than what it is I eat.  I think the second bowl was a little bigger, but not that much so that it should have made a substantial difference.  I don't know.  I'll have to try it again and see what happens whether ice cream goes back into my diet or not.  I've never eaten a lot of ice cream, but I do enjoy it.

Hamburgers - I tried hamburger at home first.  I purchased 93% lean and broiled it.  I had it for two meals and felt totally fine both times.  Tuesday night we went to a local hamburger place.  I ate most of a 1/4 lb. cheese burger, one onion ring and a few french fries.  As well as being the first hamburger I didn't prepare, it was my first fried foods.  It all did OK.  I actually didn't enjoy the burger as much as I have enjoyed theirs in the past, I think it was a little overdone.  After I ate, I felt a heaviness in my chest, I think it was from the grease and the fried foods.  It wasn't bad and it shortly went away.  I think it will be OK to do that again.

I've ate banana bread and pumpkin bread several times over the last week.  Sometime it does just fine.  Sometimes I've had a little cramping.  I've never felt really bad.  I think the answer to this and most other sweets is keep the quantities small.  If I just do a bite or two at a time, it is usually OK.  If I eat too much, not necessarily.

On Friday, I actually tried a couple of pieces of candy.  I had one miniature Reeces peanut butter cup and one Rolo.  I had no issues.  It did give me encouragement that as long as I keep the quantities small, I should be able to do most sweets.

Friday night I tried pizza.  I like all-meat pizza.  We got my favorite thin crust pizza with pepperoni, Italian sausage and Canadian bacon.  I think it was a bit much.  This time the heaviness of fat and grease felt like it was sitting lower, I would say in my stomach, but I don't have a stomach, so I guess in my belly.  About an hour later, it came back up.  I think it will be awhile since I try pizza again.

Saturday I tried bratwurst.  I ate about half of one and I didn't enjoy it, but it didn't make me sick.  Today I ate the other half and it seemed greasier.  Apparently, warming it up in the microwave brought the grease to the surface more.  I don't know.  I kept it down, but I didn't feel good for awhile after eating it.

The good thing is even when something doesn't set right and I don't feel good after eating, usually it's only 15-20 minutes and then I feel better.

I find it interesting that the hamburger, pizza and bratwurst all had one thing in common: they are all foods that I ate regularly before, that I was starting to miss after not eating for over 6 weeks, and I didn't enjoy any of them as much as I was expecting to.  Have my taste buds changed?  I don't know.  I can't explain it.

There's still more experimenting to do....

Wednesday, April 5, 2017

Supper Tonight

I baked a frozen tilapia filet for supper tonight.  I ate the whole filet!  It may have only been 2.5-3 oz and prior to surgery I'm sure I would have ate two of them, but I ate the whole filet!  I also had a little over half of a small russet potato, along with some onion and peppers, and a small piece of a roll.  It was quite tasty and felt like a complete meal.  Some of my meals are more complete than others.  It's always nice when I put a complete meal together.

Tuesday, April 4, 2017

6 Weeks Post-Op - Back to Work

Surgery was 6 weeks ago today.  Yesterday, I started back to work part-time.  I have a desk job with very flexible hours.  Since I've been sleeping in and I do better in the afternoons, I went in at 1:30 yesterday.  By 4:30 I was tired and came home.  When my husband got home and wanted to go for a walk, I found I had no energy for walking.  It was amazing how working for just 3 hours had made me so tired.  It doesn't seem like sitting at a desk, mostly working on a computer should be that different than sitting on a couch at home, often on my laptop, but it is different.

Today I didn't go in until 2:00.  I worked till a little after 5:00.  I didn't feel as tired as I did yesterday.  Wasn't tempted to go for a walk today because it was raining, so I don't know how that would have been, but I did do household chores this evening (load the dishwasher, do some laundry, etc.) and seemed fine.  However, I started working on taxes (really need to get those done) and hit a brick wall.  I'll have to finish up tomorrow as I meet with my tax accountant on Thursday.

I'm tired.  I'm going to bed.  Tomorrow is a new day.

Saturday, April 1, 2017

Words of Comfort

As I am sure most others who have undergone this surgery, I had lots of anxiety in the days and weeks leading up to the surgery.  I knew I was probably going to have the surgery for a year before I actually had it.  It was scheduled for 3 months. That gave me plenty of time to get anxious and freak out.  I have a strong Christian faith and without the support and prayers of my family, friends, local church and others, I don't know if I would have made it through.

I want to share a couple of particular things that I found inspiration from in hopes that they might help someone else facing this surgery or another crisis in their life.

The first is from Sometimes an Unknown Path: 40 Psalm-Prayers in Contemplative Voice by Jerry Webber.  I am on the staff at my local church as the Business Administrator.  During a staff meeting just after I had scheduled my surgery, the pastor shared this devotion.  I have bolded the part that particularly spoke to me.  Then at the last staff meeting before I was leaving town before my surgery, the pastor said she was rereading one of the devotions from this book.  She knew she had read it, but she didn't know when and she didn't remember that it was the one that had spoke to me so much about my surgery, but yes, this was the one she was rereading.  I would say that was a "God Moment".
Day 13 - Psalm 143:5-10 Prayer: A Psalm of Opening to God
God, I call to mind significant times I have experienced Your presence this past year ....
I give thanks for the beauty I have seen in the created world ....
I consider what Your hands have done in the lives of people I know....
I open my hands and lift them wide to You, open and expectant.
Fill my thirsty life with Your love, with Your compassion,
     with Your mercy, with Your justice.
God don't leave me to my own wiles and manipulations.
I see so little of what is really real that if left to myself
     I'd destroy my own life and those around me.
Speak into me Your never-ending love at the dawn of this new day.
Show me the first steps of the path into my future,     the steps that will draw me deeper into Your heart,
     the steps that will draw out of me my most authentic self,
     the steps that will lead me to lay down my life,
     on behalf of those You love and gave Your own life for.
Deliver me from my fear of taking the next risky step,Heal my need to control the future.  The only security I need is Your presence.
For my heart's desire is to walk with You into the days ahead.Walk with me and show me how to do that.Give me Your Spirit as a Guide along this path You have invited me to walk.And when the time comes, give me the grace to soar.Amen.
The second item that really spoke to me in the weeks leading up to my surgery was a song.  I play in our church's handbell choir and we were doing a concert with all of our church music groups on January 25, 4 weeks before my February 21 surgery.  To close the concert, the congregation and Praise Team sang "Made Me Glad" by Hillsong Worship.  It had been a particularly rough day at work.  I was really anxious about my upcoming surgery.  During this song the tears just flowed.  Again, I'll bold the particular lines that really got to me.

"Made Me Glad"

I will bless the Lord forever
And I will trust Him at all times
He has delivered me from all sin
And He has set my feet upon a rock

And I will not be moved
And I'll say of the Lord

You are my shield, my strength
My portion, Deliverer
My shelter, strong tower
My very present help in time of need


Whom have I in Heaven but You?
There's none I desire beside You
You have made me glad
And I'll say of the Lord

[Chorus:]
You are my shield, my strength
My portion, Deliverer
My shelter, strong tower
My very present help
You are my shield, my strength
My portion, Deliverer
My shelter, strong tower
My very present help in time of need


You have made me glad
And I'll say of the Lord

[repeat chorus]

My very present help in time of need
 [repeat]

Hope you find inspiration in this devotion and song as I did.  All of life's challenges are easier when God is walking at our side.

Thursday, March 30, 2017

One more thing.....

I almost forgot the best news of my follow-up appointments today....

I no longer have to keep a food diary and document everything I eat and drink.  Yea!

Follow-up trip to MD Anderson

Had a follow-up appointment today with Dr. Mansfield and the Nutritionist at MD Anderson.  I know I'm doing well, it was nice to have that confirmed by the test results, surgeon and nutritionist.

The nutritionist is ready to have me venture out and try new things.  She wants me to try more fatty foods.  She wants me to try sweets.  Basically, she wants me to see if I tolerate these things or if they make me sick.  I need to start small and start at home.  I don't like the idea of getting sick out  It seems strange to basically be trying to make yourself sick, but if I don't try new things, I'll never know if I can have them or not.  We'll see how it goes.

We fly back home tonight.  Quick trip.  They want to see me back in 2-3 months.

I'm hoping tonight's trip home is uneventful.  The trip down last night was a little more eventful then I would have preferred.  First of all, our flight scheduled to leave at 2:21 got pushed back to 4:38.  It was basically 5:00 before we actually took off.  When you need to eat every 2-3 hours, these type of delays become an adventure.  I ate chicken breast and cheddar cheese and crackers for lunch on the way to the airport, about 12:45.  I packed string cheese and pretzels for snacking on the plane.  I first had them about 3:15, while still waiting at the airport.  I had them a second time, along with the savory snack mix (pretzels and a couple other things) offered by the airline while on the plane about 5:30.  About 7:00, we were getting close to landing and I was talking about plans for supper and the need to eat before checking in at the hotel because it would be time for me to eat again and I really didn't want string cheese and pretzels again.  As we were getting ready to land, we had made our decent and were getting close to landing on the runway, when the pilot aborted the landing and we started gaining altitude again. When he finally explained to us what happened, apparently another plane decided to taxi on our runway. Glad we aborted landing instead of crashing into the other plane. We circled around and had a successful landing.  However, by the time the landing was delayed, we got off the plane, got the rental car, etc., it was now 8:00.  We found the closest restaurant, but by the time we ordered and then they were running slow, it was almost 9:00 before we got food.  Even though you supposedly don't feel hunger without a stomach, you feel something and by this point, it was long enough past the time I should have been eating that my body knew it and I wasn't feeling well.  The food finally came and I was able to eat and feel a little better, but it's sort of funny that when you're hungry, you can't eat as much as you can other times.  The nutritionist confirmed this morning that this is normal.  I need to figure out a wider variety of snacks to pack so I have some other choices in this type of situation.  Just one more of the things I'm learning....

We did have sort of a fun encounter on the way to the hotel after the restaurant.  We saw a very bright meteor move across the sky. We're on the interstate, right next to downtown Houston and it was as bright as could be. I'm not sure I've actually ever seen a meteor before, definitely not as bright as this one. It passed by us (very quickly) and then disappeared into the night sky.  That was cool.

Tuesday, March 28, 2017

5 Weeks Post-Gastrectomy: More About Food

Today is 5 weeks since my surgery.  I thought people might be interested in what I eat in a typical day and how that has changed and increased in the fairly short period since my surgery.  Since I have been keeping a food diary all this time, it is easy to go back and compare.

Tuesday, March 7, 2 weeks after surgery, 1 week after getting out of the hospital
Breakfast - 3/4 of a scrambled egg with cheese, 1/4 of a mini bagel, 3 sips of water
An hour later (taking 1 1/2 hours to drink it) - 8 oz Carnation Breakfast Essentials with Milk
Lunch (1.25 hours after finishing beverage) - 1/2 mini bagel, 3/4 oz low fat cheddar cheese, 10 bites roasted chicken, 2 chunks watermelon, 4 oz water
45 minutes later (taking an hour to drink it) - 8 oz iced tea
30 minutes later - 4 saltine crackers with peanut butter, 4 sips of water
An hour later - 3 oz water
Supper (30 minutes after finishing beverage) - 12 bites grilled salmon, 6 bites red onions and sauteed spinach, 2 chunks garlic roasted new potatoes, 3 oz water (I can tell from the selection we went out to eat that night)
1.25 hours later - 2 oz water
30 minutes later - 1 container Greek yogurt
1 hour later - 6 oz smoothie with protein powder

Tuesday, March 14, 3 weeks after surgery
Breakfast - 1 scrambled egg, 1/2 mini bagel with butter, 5 sips water
1.5 hours later (taking an hour to drink it ) - 8 oz Carnation Breakfast Essentials with Milk
Lunch (40 minutes after finishing beverage) - 10 bites lemon pepper chicken, 8 bites mashed potatoes, 4 bites green beans, 3 oz water
2 hours later (drinking over 1.75 hours) - 10 oz water (I had a doctor's appointment that afternoon that took much longer than anticipated and I wasn't prepared with any snacks....I need to remember to always take snacks)
Supper (30 minutes later) - 12 spoons chicken noodle soup, 12 bites pork chop, 10 bites mashed potatoes with gravy, 6 bites green beans, 4 bites apple sauce, 4 oz water
2 hours later - 1 string cheese, 1 small pkg mini pretzels, 1/4 peach
1.5 hours later (taking 1.5 hours to drink) - 18 oz smoothie with protein powder

Today, Tuesday, March 28, 5 weeks after surgery
Breakfast - 1 egg, 1/2 English muffin with butter, 3 oz water
1 hour later (taking 40 minutes to drink it) - 4 oz Carnation Breakfast Essentials with Almond Milk (I've had a few times of it not settling well, so am experimenting with almond milk instead of regular milk...haven't decided yet if it makes a difference.  Don't really like the taste of almond milk.  Got unsweetened this time, may try sweetened.
Lunch (45 minutes after finishing beverage) - 17 bites rotisserie chicken, 4 Club crackers with low fat cheddar cheese, 1 bite watermelon, 2 oz water
1.25 hour later - 6 oz water
30 minutes later - 1 Greek yogurt, 1 string cheese, 1 oz water
2.25 hours later - 5 Club crackers with smoked white fish, 1/2 peach, 4 oz water
Supper (2.75 hours later) - 18 bites roasted chicken, 8 bites roasted potato, 3 bites onion, 1 clove roasted garlic. 2 oz water
1.25 hours later (taking 1 hour to drink) - 16 oz smoothie with protein powder

This is just a sampling.  What I eat and especially how much I eat varies greatly day to day.  But you can see how eating and drinking is pretty much a full-time job.


Sunday, March 26, 2017

Major Outing

I am a huge Kansas Jayhawks basketball fan.  As such, I couldn't resist the chance to watch my Jayhawks who were playing in Kansas City (where I live) in the Regional Final of the NCAA Tournament for the chance to go to the Final Four.  So on Thursday night, as the Jayhawks 32 point victory over Purdue was coming to a close, I got on StubHub and bought tickets for Saturday's game against the Oregon Ducks.  I purchased tickets for my husband, adult daughters and brother also, since we all have been watching the tournament games together.  I was excited to be going to the game, but nervous about if I was really up for it or if I was making a big mistake.

The game itself did not go as expected or as we would have liked.  After scoring over 90 points in each of our first three tournament games and winning each contest by at least 20 points, we couldn't hit shots and Oregon couldn't miss.  Our comeback fell short and we went home again after the Elite 8 rather than going on to the Final Four.

However, the outing was a success.  I carefully planned out the schedule, what I was doing about eating and drinking, all things I'm going to need to continue to do on future adventures.  Even though the game wasn't scheduled to start until 7:30, we left the house a little after 4 because we wanted to get there in plenty of time and didn't know how long it would take for traffic, parking, picking up tickets, getting into the arena, etc.   We got downtown shortly after 4:30 and dropped my daughter off where they were distributing the StubHub tickets.  Turns out inviting my brother was a really good idea.  He works less than two blocks from the arena, right on the other side of the entertainment district where KU was having a pep rally at 5:00.  His parking garage was closed for event parking, but as an employee he could still get in and it was free.  So, we had close parking and it was FREE, how cool is that?!?  I had picked up a Smoothie with whey protein that I was drinking on the way downtown and planned to continue drinking until I was finished or about 5:30.  When I was told by the security officer that I couldn't bring the drink in to the entertainment district for the pep rally, I accepted it and planned to stand over to the side.  My daughters, however, would have none of that and went and explained how I needed to have the drink for medical reasons, how I couldn't drink it fast, etc.  When you say "she just had her stomach removed", you get some attention.  He signaled me in.  I thanked him.  We enjoyed the KU cheerleaders and pep band at the pep rally, along with hundreds of other KU fans.



Since we were parked in the garage right across the street, after the rally we were able to go back to the car and retrieve the food I brought in a cooler.  While waiting in line for the doors to the arena to open (they opened at 6pm), I ate the rotisserie chicken breast and slices of cheese and crackers I had brought.  Others in our group would get supper once inside the arena, but I suspected the concession stand choices did not fit with my diet.  We were to our seats by 6:15 and about 7:00 I went and purchased a bottle of water which I drank until about 8:30.  Then about 9:00, I had the string cheese and mini-pretzels that I had in my purse.  It all worked out, I was able to eat and drink pretty much on schedule.  The outing was a success!

Just wish the Jayhawks would have won!  

Tuesday, March 21, 2017

4 weeks/1 month Post Total Gastrectomy

It was 4 weeks ago today that I had my prophylactic total gastrectomy for CDH1 and because it was in February (and this isn't a leap year) that means it was also one month ago today.  3 weeks ago today I got out of the hospital.  A lot has transpired in those 3 weeks.  For the most part I'm doing pretty well and adjusting to this new life.  But then there are days that things aren't going quite as well.  Today is one of those days that I don't feel bad, but I don't feel great.  I don't even really know how to describe it.  This morning, just a couple hours after getting up, I laid down for a few minutes that turned into over an hour.  I wasn't really tired, but just didn't feel great so laid down.  I know it's OK.  I know I'm still recovering.  I know it will get better and it is better, but sometimes I just get tired of it and want to quit.  I don't want to eat every 2 hours.  I don't want to drink in between eating.  I don't want to go for a walk.  I just want to lay here or sit here and do nothing.

Tomorrow's a new day.  We'll see what tomorrow brings.

Medication continued and Acid Reflux

A couple of things I forgot to mention in yesterday's post about medication:

After the surgery, I was also prescribed daily injections of enoxaparin.  These injections given into my abdomen on either side of my incision were to reduce the chances of blood clots forming.  Because I refused to poke myself with a needle, I made my husband do it for me.  He would wake me at 7am before he went to work, give me the shot, and then I would go back to sleep.  The last dose was yesterday.  It was nice not having to be awakened for a shot today.

I have suffered with acid reflux for almost 30 years.  Since I now have no stomach to form the acid, we were hopeful this problem would go away after surgery.  It partially has, not necessarily entirely.  I do still have some problems with belching, but don't have the acid as part of it.  One way I know I have eaten enough (or too much) is I start belching.  Since surgery, I am no longer on the pantoprazole that I had taken for years.  I was also told not to take Pepcid Complete that I would sometimes take in addition.  I was told I can take Tums or an equivalent.  There have been just a few times that I have used Tums post surgery if I am belching a lot or if I need help just settling things down a little.  I used to have lots of problems at night when I first laid down, that seems to be much better.  Nice to know there's some fringe benefit to having your stomach removed!

Monday, March 20, 2017

Medication

As you might expect, you have to be careful about what kinds of medication you can take, both prescription and over-the-counter, after having a total gastrectomy.  Since you have no stomach, things like extended release do not work.  You can't take any capsules; you can't take anything with a coating.  The only type of tablet you can take is one that is compacted powder with no coating.  Some people have trouble swallowing pills at all.  I've been able to swallow small ones.  I haven't tried any large ones yet.

Some people prefer liquid medication.  I've had problems with the liquid.  The ones I've tried tasted nasty and came back up.  First of all, I was given potassium as a liquid as I was being released from the hospital.  It promptly ended up on the bathroom floor.  They gave me pills and I was fine.  They sent me home with liquid prescriptions of pain killer and stool softener.  Fortunately, I haven't had to use the pain killer at home.  I haven't used pain meds since the night before I was released from the hospital.  I tried to use the stool softener the first few days, but had trouble keeping it down.  We went to the drug store to get an over-the-counter stool softener in tablet form.  We were very frustrated to find it doesn't exist.  Everything is either a capsule or a coated tablet, nothing I could take.  I eventually decided to just stop taking the stool softener and have done OK.

I also need to take a daily multi-vitamin.  They recommend either liquid or gummy.  I have found the gummy vitamins work quite well.

Saturday, March 18, 2017

More Food Choices

I'm starting to do a better job of having complete meals at home (meat, potatoes, vegetables).  Sometimes it is leftovers from when we went out to eat, one set of leftovers can last me several meals.  Sometimes it is something purchased at the meat counter at the local grocery store (our meat counter has preseasoned meats, precooked vegetables and others things, making home preparation very easy).  Sometimes it is cooking fish that was purchased in the frozen section at the grocery store.  But the point is, to start with, I was just doing things like a mini bagel with cheese and deli meats or something like that.  That is fine, but it gets boring really fast.  I realized I hadn't been having hot food at home.  Having hot food at home added to the enjoyment of food and "flavors" that I talked about in my previous post about eating out.

I have also added some new meat to my repertoire.  I have had pork chop and BBQ pork ribs.  Both have went down fine and more importantly, stayed down.  I take pretty small bites.

In general terms, I am quite pleased with my ability to eat "real food".  Some people talk about difficulty with food getting stuck or having to puree food or chew, chew, chew.  I don't feel like I've had any of those problems.  I find myself taking bigger bites than I probably should and chewing less than I probably should, but most everything seems to go down fine.  When I have had problems, I don't necessarily feel like it's directly related to what I'm eating or how I'm eating it.  I think sometimes things just settle well and sometimes they don't.  It seems I'm more likely to have problems with Carnation Breakfast with milk (which usually is fine) than I am with food items.

I'm also getting pretty good about anticipating how much food I can eat.  I can usually judge it pretty close and put the right amount of food on my plate.  The amount of food I am eating at each sitting is also expanding.  Also, there is more differentiation between "meals" and "snacks".  The first couple of weeks, I was eating every 2-3 hours, but you couldn't tell if I was eating lunch or supper or a snack in between.  Recently, it is often more like a meal twice a day (excluding breakfast) and then snacks in between.

I've still got a long ways to go....but I'm getting the hang of this thing.