Friday, July 21, 2017

5 Month Post-Op

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

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

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

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

Sunday, July 9, 2017

Long 4th of July weekend

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Sunday, June 18, 2017

Follow-up

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


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

Sunday, May 21, 2017

3 months Post op

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

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

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

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

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

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

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

Tuesday, May 2, 2017

10 Weeks Post Op - Update on return to work

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

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

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

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

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.