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!

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.......

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.

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.

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."

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.

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 4^th 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.

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.

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!

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.....

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.

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....

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.

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.

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.

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.

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.

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!  

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!

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.

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.

Pathology Results

Finally talked to the surgeon today and got the pathology results.  Were supposed to take a week, took three, not sure why it took so long.  Reminds me of the genetic test results in the beginning that took two weeks longer than they were supposed to.

The results were about what I expected.  10 spots were identified: 8 were in situ which means they are more superficial, not even advanced as far as T1A tumors; 2 were intramucosal, which is T1A.  T1A is no problem, it is noninvasive.  If they were T1B, that would mean they had invaded into the submucosa, but that was not the case.  Since the entire stomach was removed and nothing was invasive, nothing more needs to be done.

What these results also do is give me the reassurance that I made the right decision to have the prophylactic total gastrectomy.  It could be that I could have lived the rest of my life and these would never have grown to be invasive T1B tumors, but it could also be that they did and they weren't detected until it was too late.  That is a chance I'm glad I chose not to take.

More About CDH1

The E-Cadherin gene or CDH1 is a tumor suppressor protein that maintains tissue integrity as it mediates cell-cell adhesion. It helps to regulate cells so that they don’t grow out of control or grow too rapidly.  For those who care, the CDH1 gene is located on chromosome 16q22.1 and it contains 2.6 kb of coding sequences with 16 exons.

In 1998, Dr. Parry Guilford first linked inherited mutations in the CDH1 gene with familial gastric cancer in three Maori families in New Zealand.  Many subsequent studies have been done and published papers can be found online.  Depending on your biological and medical knowledge, some are easier to read than others.  Because this is such a rare mutation, many of the studies have very small sample sizes and with each new study, the results change, sometimes considerably.

My gene mutation is c.2287G>T.  It is a nonsense truncation in Exon 14.  My results, dated May 22, 2015, indicate a 80% cumulative risk of diffuse gastric cancer by age 80 for both men and women, as well as a 39%-52% risk of lobular breast cancer for women.  There also may be an increase risk for colon cancer, but no percentage was listed in my test results.  In updated clinical guidelines, found in several articles online published February-May 2015, the cumulative risk for diffuse gastric cancer by age 80 is listed as 70% for men and 56% for women and the risk of lobular breast cancer is listed as 42%.  According to those guidelines, there is currently no evidence that the risk of other cancers is significantly increased in individuals with a CDH1 mutation.

Whether the risk is 80% or 56%, or something in between, the risk is high when you are talking about your life.  The recommendation of all the studies is that individuals who tested positive for a CDH1 mutation should consider prophylactic gastretomy regardless of other screening.  However, if the individual chooses not to have the gastrectomy or delays the gastrectomy, annual upper endoscopy is recommended with a minimum of 30 random biopsies.  However, the literature goes on to say that because of the very focal nature of these endoscopically invisible lesions, it is quite possible that they will not be detected by random biopsies.  So have the endoscopy, but more than likely, it won't find anything.

In almost 100% of the cases where a prophylactic total gastrectomy has been performed because of a CDH1 mutation, signet-ring cell carcinoma has been found in the pathology after the surgery, meaning that the patients are considered to have Stage 1 cancer.  However, because it is early stage and contained within the stomach, the surgery is curative and no further treatments are needed.

Going Out to Eat

Went out to eat at a restaurant tonight.  3rd attempt, 3rd success.  I hope we can keep those odds going.  Haven't ventured far on the menu selection.  Have had grilled salmon twice and grilled red snapper once.  Grilled fish seems to do pretty well.  Have had some sort of potato and a little vegetable each time.  It works for Keith to get a meal and for me to just eat a few bites of it.

To give some background, Keith and I historically eat out all the time.  I'm not talking just a few times a week, I'm talking basically every meal.  My late husband, Richard, and I ate out a lot, but not like this.  Richard did a lot of the cooking also and did almost all of the kitchen clean-up,  When he died, one way that made it easier to cope was to eat out.  Loading the dishwasher was one of my trigger points as it was something he always did.  If we ate out, there were less dirty dishes.  I totally got out of the habit of cooking.

I was starting to feel guilty about eating out all the time and was trying to cook more about the time Keith and I started dating.  Between going out to dinner on dates and then going out to check out restaurants for his kansastravel.org website (he reviews locally owned restaurants and all sorts of attractions from museums to zoos to everything), we just kept going out more and more.  After we got married, it continued.  With both girls gone from home, going out to eat is just so much easier than eating at home.  Others may not understand it, but it was our routine.

Facing this surgery, that was one of the things we wondered about.  We knew we would be eating at home more.  The thing is, I don't even hardly remember how to cook, not that I was ever a very good cook.  The rare occasion we do eat at home, Keith often cooks and does one dish type meals that he did as a bachelor.  If I cook, it tends to be separate dishes, but nothing fancy.  Often from freezer to table.

With the post-gastrectomy diet, I have to eat every 2 hours.  I eat very little at each time.  A typical "meal" might be 1/4 or 1/2 of a mini-bagel, 1/2-1 oz of low-fat cheddar cheese, 6-10 bites of chicken.  I've been eating all week on a rotisserie chicken Keith bought Sunday.  The food's fine, but there's really not much to it.  There's not the flavors that you get in having a "real meal".  I get the flavors by going out to eat.  I don't get those flavors from eating at home.  Maybe eventually, I'll figure out how to cook again and put flavors in my own food, but right now I don't have the energy for it.  And if eating out works in this new norm, maybe we'll just go back to eating out.  But right now I don't want to try it every day.  I am thankful that it is an option and seems to be working so far.  I know lots of people haven't done as well as I have at this point.  I'm thankful that I am able to consume real food (although limited selections, still real food).

I haven't tried any food yet that my body absolutely hasn't tolerated.  The biggest problem I've had were with the protein shakes and some other beverages I tried the first couple of days.  The Carnation Instant Breakfast and Smoothies with added Protein Powder (when I remember to add it) work.  I use them as supplements between meals which give me both the protein as well as the liquid that I need to stay hydrated.  I'm not sure if I'm following exactly the schedule of what I'm supposed to be doing, but I feel like it's at least pretty close.  So far so good.