7th Anniversary

Today marks 7 years since my total gastrectomy. I haven't posted in a year and for the last few years, I've only posted once or twice a year. What that mainly means is that I'm doing great, living a normal life, so much better than I ever envisioned with this life without a stomach.

It's been since my 3rd annniversary since I talked about weight. For people that are contemplating this surgery or recently had a TG, there are always questions around weight: How much did you lose? When did you stablize? Did you gain weight back? etc. etc. As with everything, each person is different, but I thought it might help to summarize the weight changes here and give an update of what has happened over the last four years.

As I've shared before, I went into surgery overweight at 243, so weight loss for me was a fringe benefit of the surgery. I dropped to 230 basically immediately after surgery and continued to lose weight pretty rapidly for 9 months. In November, I started to stablize around 170, but then in December and Janaury started to lose again. Mid-late January (getting close to a year after surgery), I stabilized again around 161-164. After a few months at that weight, I dropped down under 160 pounds in late April (2018 - 14 months after TG). I stayed around 155-157 for about a year from July 2018 to August 2019 when I started gaining.

I was very happy with my weight in the 150s and 160s. When I first started gaining (just over 2 1/2 years after surgery) and went back to the 160s in October 2019, I was OK with that, but unfortunately, I kept gaining. In March 2021, I crossed over into the 170s which I was less OK with, but OK, then a year ago, in February 2023, I crossed into the 180s which is where I am now. It's still better than where I was before the surgery, but I would be happier at 10-20 pounds less than the 185 I am now. The probem is, I've never been good at losing weight (except by having at TG). My even bigger concern is continuing to gain weight. I really don't want to do that.

It's amazing that you can gain weight and be overweight without a stomach. Now to see if I can figure out a way and actually have the drive to lose weight so I don't end up a place I don't really want to be. If I don't lose, I will be OK with that, but if I cross over 190 or worse yet, over 200, I will not be OK with that. I need to reverse this trend.

6th Anniversary and Facebook Memories

6 years ago today, I was laying in a hospital bed at MD Anderson, totally out of it, having had my stomach removed the day before. Last year, around my 5th anniversary, I enjoyed all of the Facebook memories that popped up. There were posts from me as I was anticipating the surgery,from my husband giving updates during surgery and after, and then from me again when I was finally with it enough to post myself. I thought it would be helpful for me as I reflect back and for others who are contemplating the surgery and wonder what lies ahead to put those memories together here in one place.

Me - February 7, 2017, 8:04 AM

Two weeks from today I embark on the scariest journey of my life. When I was diagnosed with breast cancer in April 2015, I had genetic testing done. I tested positive for a very rare gene mutation, CDH1. While it is affiliated with breast cancer, it has an extremely high correlation with Hereditary Diffuse Gastric Cancer, cancer that forms in the lining of your stomach and is undetectable until stage 4 or 5 and it is too late. The only recommended course of treatment is to have a Prophylactic Total Gastrectomy, ie have your stomach removed as a preventive measure. After much research and agonizing, I have decided to have this surgery completed at MD Anderson in Houston on February 21. I appreciate your prayers for a smooth surgery, uneventful and swift recovery and for a lifetime of learning to live a normal life without a stomach, it can and has been done.

Me - February 18, 2017, 8:11 AM

Sitting in our condo on Padre Island, looking out over the Gulf of Mexico. Flew down to Houston on Wednesday. Had pre-op appointments at MD Anderson on Thursday, Came down to Padre Island/Corpus Christi for the weekend. Will return to Houston on Monday and hope to have surgery on Tuesday. Right now things are uncertain. Started having what I thought were allergy symptoms late Monday, was really bad Tuesday and Wednesday, making the flight miserable. Hoped it was allergies and the allergens wouldn't be present in Texas. Am better, but still congested and coughing. Definitely not the flu but likely a cold and if I don't get this whipped in the next 3 days, it may delay surgery They have this thing about you being healthy and being able to breathe going into surgery.

Me - February 20, 2017, 6:12 PM

The good news is I think I am feeling well enough that surgery will happen tomorrow. The bad news is I think I am feeling well enough that surgery will happen tomorrow. Thank you to everyone for your continued prayers. We report to the MD Anderson OR tomorrow at 5:15am. Surgery should begin around 7:30am.

Keith Stokes (my husband) - February 21, 2017, 7:17 AM

Linda just went back to surgery. The first update will be at 10, then every 2 hours.

Keith - February 21, 2017, 10:57 AM

About 40 minutes ago, I was told the surgery was complete and the doctor would see me soon. Still waiting.

Keith - February 21, 2017, 2:51 PM

Just saw the surgeon. She will be starting to wake in about 20 minutes and I may be able to see her in about an hour and a half. He said that all went well. Nothing looked bad but the type of pathology they will do will take about a week.

Keith - February 22, 2017, 8:51 PM

Linda's heart rate is rapid, but it isn't bothering her beyond the annoying alarms. We moved floors so they can monitor telemetry continuously. They took x-rays and blood for tests. The heart rate has not responded to drugs so far.

Linda still sleeps as much as they will let her, but I told her of the KU victory.

Keith - February 23, 2017, 1:25 PM

Linda's heart rate has behaved today.

On her most recent walk, she took 2 of the very short laps for the first time. She has fewer tubes and is more comfortable.

Keith - February 24, 2017, 12:37 PM

Linda is progressing and will try to walk and sit up more today.

She is now permitted a tiny amount of clear liquid and hasn't wanted more.

She has tulips from her sister in law and appreciates them, but there is no need for others. There is little room and we probably have at least one more room change ahead.

Keith - February 25, 2017, 9:40 PM

Progress is very slow. Linda still sleeps often, but was up for 5 short walks today and would take more, but for the hassles of being in the hospital. The doctors seem to think that her progress is normal.

This was the second day of liquid diet. The quantity permitted is very small, but Linda does not appear to mind the quantity. I think she will move to soft food sometime tomorrow.

Me - February 27, 2017, 5:58 PM

Thank you to everyone for the continued prayers and concern. It's hard to believe it's been almost a week since surgery. It's been an adventure. Surgery went well and as expected. I've had some issues with temporary high heart rates and low oxygen levels, but nothing has been severe and we continue to work on getting it all under control. Had nothing to eat or drink Tuesday, Wednesday, or Thursday. Friday and Saturday was on a clear liquid diet of 240cc every 8 hours. That's not very much. Was moved to mechanical soft diet on Sunday. Was frustrated over the weekend because even though I was given the go ahead to eat, had no direction as to what I should really be doing since the dietitians don't work over the weekend, made even more complicated because the heart issues had me being on the telemetry floor instead of the normal floor I would have been on with this type of surgery where the nurses understood a little better what surgery I had done and what my needs were.

Today has been much better as I've got direction from a dietitian, got switched to a post gastric surgery diet that I was supposed to be on yesterday instead of the one I was on, and got up and walked a lot. Even went to the beauty shop and had my hair washed.Yesterday I was getting mixed signals on everything, including walking. They are talking that I could be released from the hospital as early as tomorrow. We'll see. Will then still be in Houston for at least a few days before returning to KC.

Me - February 28, 2017, 3:23 PM

Got out of hospital this morning. Am at hotel (connected to hospital). Will visit doctor and nutritionist in office on Thursday to evaluate if we come home Saturday or if it's an additional week.

Me - March 1, 2017, 11:41 AM

Yesterday was an adventure on so many levels!

I got released from the hospital a little after 11:00, beginning the adventure of figuring out how to live and eat without a stomach...on my own! I'm supposed to eat something every 2-3 hours, so it was basically time to eat. 6 pages of post-op diet guidelines in hand, we explored all the food options at the hotel, including a small store and a "grab-and-go". Settled on a few chunks of watermelon and some cheddar cheese. Then headed to the nearest grocery store. Was hoping Keith could push me in a wheelchair, but they only had scooters. If you've never used one of those things before, they are an adventure in and of themselves. Added to it, the grocery store was in the midst of a major remodel and had boxes and stuff all over the store as they were reshelving and such. It was an obstacle course to navigate through. With diet guidelines still in hand, we read labels and compared items like I've never done before, It probably took us an hour in the store and we spent less that $50. Spent the afternoon trying to consume something every two hours. Had trouble keeping much of it down. Had not had trouble with this in the hospital. Reevaluated early evening using the food diary I'd been keeping all day and realized the solid foods were staying down, but liquids were causing more problems. Water seemed to be fine, but not really anything else. They encourage protein shakes and such to fill gaps between meals. I was trying them and some other beverages to keep hydrated, but that part just wasn't going well. I think I was pushing myself too hard and trying to do too much. I've backed off and am doing much better.

The adventure last night was trying to sleep. I found the bed at the hotel EXTREMELY uncomfortable! It is super soft and I just couldn't sleep. Tried moving to chair in the middle of the night, but it wasn't a chair designed for sleeping. Finally woke Keith and traded sides of the bed and slept a little better, but not much. Am exploring other options today.

Me - March 2, 2017, 8:50 AM

Had a bed board under the mattress last night. Slept much better! Follow-up with doctors today. Will know in a few hours if we get to return to KC soon.

Me - March 2, 2017, 6:54 PM

March 2, 2007 - It was about 9:20am when I got the call that changed my life forever. That's the day my husband and the father of my two wonderful children, Jesi Lipp and Mary Clow, died. We've been through so much since then. 4 graduations, 3 weddings, 1 divorce, and so much more. I love my children so much. It is hard to be away from them today. I want to wrap my arms around them, but I can't because here I am on March 2, 2017 embarking on another journey that will change my life forever. I had the follow-up with the doctor and nutritionist today. He can't decide whether to let me go home on Saturday or not. A couple of the blood counts are not quite where he would like for them to be. Will have another blood test tomorrow and then decide. So much uncertainty, so much unknown about this future without a stomach. So much like 10 years ago when I didn't know how I was going to keep going, but knew I had to. For myself and for my children. I now also have a wonderful husband and son-in-law, and ex-son-in-law. They have all played such an important role also. Thank you to everyone who has helped us get through the last 10 years and who will be along on the journey for the next 10.

Me - March 3, 2017, 3:47 PM

I GET TO GO HOME TOMORROW!!!

Me - March 3, 2017, 7:53 PM

After eating every "meal" since being released from the hospital in the hotel room or at the "grab-and-go" at the hotel, we tried the hotel restaurant last night. Keith ordered an entre and I ate just a very few bites of his meal. With success then, we decided to venture out tonight and do the same thing at a real restaurant. It went well. Feeling good about this. Wasn't expecting to do so only 3 days after being released from the hospital. It was nice for Keith to be able to have something other than hotel/hospital food.

Me - March 4, 2017, 1:55 PM

GOOD TO BE HOME!

Me - March 9, 2017, 9:30 PM

I'm supposed to walk 6 times a day. I just walked all the way around Rose's pond, without stopping, for the first time since surgery. It's getting cold and windy out there....I think that gave me extra motivation.

5th Anniversary

Today is my 5th TGversary. I had my stomach removed 5 years ago today.

It's been awhile since I've posted. I post less when I am doing great. 5 years seems like such a major milestone. I definitely wanted to post.

5 years ago I had so much fear and anxiety. I had no idea what my new life was going to be like. 5 years later, I can say life is good. It's actually been so much better than I could have ever anticipated. I won't lie and say it hasn't been without its challenges, but I have found a new normal...which is really close to the old normal. If someone meets me today, they have no idea I don't have a stomach. I do all of the things I did before.

I recently became a grandmother for the first time. My granddaughter will think it's normal for her grandma to not have a stomach, she won't know any differently. I'm so glad I will be around to enjoy her. And I am even more delighted that she will not have to worry about this horrible gene mutation. Her mother tested negative. My other daughter tested positive, but it unlikely to have biological children. So this is the end of the line. I don't have to worry about passing on the CDH1 gene mutation to my descendants. That is the best news of all!

3rd Anniversary

Happy 3rd Total Gastrectomy Anniversary to me!

It was 3 years ago that I had my stomach removed and my life was forever changed....but not as much as I feared it would be.  Going into the surgery, I really had no idea what to expect.  I had talked to one person that had had the surgery, had read several blogs, and done other research online.  I hadn't yet found the CDH1 facebook group (which I would highly recommend to anyone with this gene mutation.)  One thing that I did learn from what I had read was that everyone's experience was unique.  What worked for one person didn't necessarily work for another one.  No one could give me a list of foods that I could and couldn't eat.  It would all be trial and error.  This was one of the scariest parts.  I didn't know if there were foods that I would never eat again.

I've been fortunate.  I don't know if it's because I had a great surgeon or because I did something right in my recovery or if I was just lucky, but I am in a better place than I ever dreamed I would be.  I didn't get here overnight, but I can now eat pretty much anything I want to.  There are some things I choose not to eat a lot of because I don't want to fill up on things such as salad, bread, etc.  I focus on protein. But I do eat the other things also.  The main thing that I really have to watch is sweets, but I do get to eat candy and dessert...just in small quantities.  That's one of the things I wasn't sure if I would ever eat again.  But when you only get to eat a few bites of dessert or one piece of candy, you actually cherish it and enjoy it more.  I'll post another blog about dessert and a couple of desserts I have found I can eat a whole piece of soon.

The other place I have made adjustments is in beverages.  I've always loved unsweetened iced tea and drank a lot of it.  Prior to gastrectomy, I would also drink Coke.  I've never liked Diet Coke, so I would drink the real thing.  I didn't try Coke for awhile after surgery because of the carbonation and the sugar.  When I finally did, I found I could tolerate it (in small quantities), but I didn't really enjoy it anymore.  So, I have pretty much stuck with the tea that I still love...and then I can enjoy other sweets more because I'm not wasting my sugar intake on a beverage.  I've also made an adjustment to the alcoholic beverages I prefer. My preferred drink used to be a fuzzy navel with orange juice and peach schnapps.  I have found that's now too sweet and have switched to wine more often.  I also drink hard cider, that's something I've enjoyed before and after surgery.  I don't drink much as without a stomach, the effects of alcohol are felt much sooner.

I've talked in this blog before about my weight loss.  I lost 85 pounds, going from 243 before surgery to 157 about 18 months later.  I stayed at that weight for about a year and then about 6 months ago, I started gaining weight.  I'm up to around 164 now.  As opposed to many people that have this surgery, being overweight, I saw the weight loss as a nice fringe benefit.  I was thrilled with my 157 weight and felt great about my body.  I'm still happy at 164, but really don't want to gain too much more.  If I keep gaining, I'll have to figure out what to do to stop it.  Losing weight is something I've never been able to do until the gastrectomy, so I'm not looking forward to that if it becomes a thing..but for now, I'm happy with where I am.

Many people find it hard to believe that you can live a good life without a stomach.  I'm here to tell you that you can.  I started this blog to hopefully help others faced with the same decisions I was.  When diagnosed with CDH1, I found so little information out there.  I found the blogs from other survivors to be so helpful.  If I an help someone else, that's what it's all about.

Two Year Anniversary

Two years ago today is when I had my stomach removed.  The past year has been a good year.  I'm in a good place.

Here's some highlights of the year:

We went to Mackinaw City, Michigan in September.  Mackinaw is my husband's hometown and he has a website devoted to the region mightymac.org.  One of the main purposes of the trip was to walk the Mackinac Bridge on Labor Day.  It is a 5 mile long suspension bridge connecting the upper and lower peninsula.  The entire walk ends up being about 6 miles.  I'm not someone who does much exercising and when I do go for a walk, walking a mile or two is pretty much all I do,  but I did the 6 miles with no difficulty.  I had also walked the bridge in 2011, but I had a stomach then, so it was totally different.  Last year we were there at the time of the bridge walk, but I did not walk; it was too close to surgery.  But this time I thought I could do it and I did. I did make a point of taking snacks and a water bottle with me.

Four days before the walk, we bicycled around Mackinac Island.  It is 8 miles around the perimeter of the island.  Here again, I don't bicycle.  I think the last time I had been on a bike was the last time we bicycled around the island which was four years ago.  There again, when I had a stomach.

I was a little nervous about both of these adventures, but I had no trouble with either of them.  My tag line when I posted the pictures on Facebook was "no stomach, no problem!"

In October, we made a trip to Maine to visit my brother-in-law and sister-in-law.  I had fun shopping at the LL Bean Flagship store in Freeport and the J Crew and Calvin Klein outlets in Kittery.  I might have went overboard on purchases, but on the other hand after losing 85 pounds, I still hadn't really replenished my wardrobe, so I had a good excuse.

Which brings me to my weight.  I have finally stabilized.  After losing 1-2 pounds per week for the first year, from my appointment at MD Anderson in January 2018 to my appointment in January 2019, I only lost 8 pounds.  And I think I lost 6 of those pounds as a pound a month in the first six months and just 2 pounds in the last six months, so I would call that pretty stable.  Because I was overweight going in, I feel really good about my weight at 157.

My follow-up appointment in January was a good appointment.  In general terms, all my blood work came back with good numbers.  My BUN number was a little high which could mean I have some dehydration.  It wasn't significant, just a little. They did suggest more water and/or less caffeine.  As I've mentioned before, iced tea is my go to drink and I don't really want to give it up.  What I've started doing is making two pitchers: one caffeinated and one decaf.  I drink the caffeinated during the day and the decaf in the evening.  I've never felt tea kept me up at night, but having decaf in the evening I figure is a good idea anyway.

My blood pressure was also a little low (99/67), not horrible, but not great.  If you recall, my blood pressure was a little high going into the surgery (ever since I got diagnosed with breast cancer and then CDH1) and I went into aFib after surgery, so they put me on Metoprolol tartrate.  The surgeon's speculation was that I may need to lower the dose, partially because of the weight loss.  I finally got around to calling the cardiologist today and although I'm due to go in March, they can't get me in until June.  But I talked to the nurse and we're going to go ahead and cut the dosage in half and see how I do.

Those two things were both really minor.  I continue to get an excellent report at my surgeon's visits because I am doing great!  I really am doing better than I ever expected and better than many of the people that have this surgery.  Dr. Mansfield said he wanted to see me again in a year, but after that, I would probably "graduate" and not have to come back any more.  That sound great to me!

Happy Two Year Anniversary To Me!

One Year!

It's been one year since I wrote these words:

I'm sitting here on the eve of my surgery. I'm freaking out. I can feel my heart rate accelerating. I try to take deep breaths to relax and stay calm. How did I get here? Am I really doing this? Am I really having my stomach removed in less than 12 hours? What will the rest of my life be like? There's no turning back. (View the whole post here)

I had no idea what the future would bring. I was scared, probably more scared than I've ever been in my life.  The year hasn't been easy, but in general times it hasn't been as bad as I feared.  I had set myself up for the worst.  There have been bad times, but the good times have far outweighed the bad times.  I've been blessed.  Some people have a rougher time than I have.  I don't understand the difference.  I don't feel like I have done anything in particular, but I had a great surgeon (Dr. Mansfield at MD Anderson), and I do try to listen to my body, eat every 2-3 hours (sometimes only an hour), eat protein every time I eat and keep hydrated by drinking mostly unsweetened iced tea, water, and smoothies.  I have a smoothie that I make myself (I don't like the store bought ones and they don't always settle well) almost every night as I found it often settles better in the evening than food does. 

My smoothie "recipe" is simple: ice, 100% fruit juice and/or milk (I originally used all juice, but have recently been using a combination of juice and milk), whey protein powder, Greek yogurt, frozen fruit.  Blend.

The amount of food I can eat in one setting keeps increasing.  Sometimes, like tonight, my plate looks like a real person, eating a real meal.  This was my supper tonight. I ate everything on my plate.  When eating frozen fish fillets prepared at home (this one was salmon), I can pretty consistently eat the entire thing.  Potatoes are a staple for me, these are sliced and coated with olive oil and garlic seasoning and then baked in the oven, along with the salmon which was preseasoned.  I only started doing corn a couple of months ago, but it has been doing OK.  I haven't really encountered anything I can't eat at all, but there are things I didn't try for months and corn was one of them.  I still don't do a lot of it or salad or bread, but I can eat any of them.  I mainly just don't want to fill up on foods like bread or lettuce that don't supply me with protein or many other nutrients.

I wish I could say that it was always easy and there weren't surprises, but that's simply not true.  Sometimes after eating there's a few minutes that I don't feel good.  I can't really describe it, but things just feel a little out of balance.  It usually isn't severe.  It seldom lasts long.  It doesn't happen all the time.  I just live with it.  It's not a big deal.  I don't know if this is something that will be part of the rest of my life or not.  I do know it happens less often than it did 2 months ago when it was happening less than it was 6 months ago.  So I'm guessing it may totally go away at some point or it may always be there occasionally.  Only time will tell.

It had been a long time since something hadn't set so badly that it came back up.  That was until last night.  I had some peanut butter filled pretzel nuggets for a snack.  Everything seemed fine at first, then I started not to feel well.  I don't want to be too graphic but I want to tell it like it is for those who might be anticipating or recovering from a TG.  It took two trips to the bathroom with it coming out of both ends before I felt better.  But once it was over, I was fine.  It would be easy to say that I just shouldn't eat the peanut butter pretzels, but I had some both Friday night and Saturday night and everything was fine.  I didn't feel the least bit sick then.  This is one of the mysteries of life post total gastrectomy.  You never know what is going to bother you one day that didn't bother you another day.

My weight seems to be stabilizing.  I've been right around 163 (162.7-163.4) for 6 weeks now, down 80 pounds from the 243 I weighed going into surgery.  It is a weight I am very happy with and think I look good at.  I will be thrilled if this is a weight that I maintain and won't be concerned about trying to gain weight.  Actually, wouldn't want to gain any more than 10 pounds or so and if I end up losing another 10 pounds that would be OK too.  I'm basically where I want to be.

Here's to one year of life without a stomach.  Hoping and praying the second year is even more uneventful, which I am expecting it will be.

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.

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.....

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.

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.

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.

Remembering

It was about 9:20am on March 2, 2007. when I got the call that changed my life forever. That's the day my husband and the father of my two wonderful daughters, Jesi and Mary, died. We've been through so much since then. 4 graduations, 3 weddings, 1 divorce, and so much more. I love my girls so much. It is hard to be away from them today. I want to wrap my arms around them, but I can't because here I am on March 2, 2017 embarking on another journey that will change my life forever. I had the follow-up with the doctor and nutritionist today. He can't decide whether to let me go home on Saturday or not. A couple of the blood counts are not quite where he would like for them to be. Will have another blood test tomorrow and then decide. So much uncertainty, so much unknown about this future without a stomach. So much like 10 years ago when I didn't know how I was going to keep going, but knew I had to. For myself and for my daughters. I now also have a wonderful husband and son-in-law, and ex-son-in-law. They have all played such an important role also. Thank you to everyone who has helped us get through the last 10 years and who will be along on the journey for the next 10.