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.

Drinks, Sweets and Dumping

Dumping syndrome is a condition some people experience after a total (or partial) gastrectomy.  It is caused when food, especially sugar, moves into your small bowel too quickly.  Symptoms of dumping syndrome include nausea, vomiting, abdominal cramps, diarrhea, dizziness and rapid heart rate.

I have been very fortunate.  I have not experienced much dumping.  Actually, in my first year, I didn't have any severe dumping.  There might have been a few times that I had a little, but not really much at all.  I don't know if what I had would even be considered dumping as it was so minor.

Fear of dumping syndrome is one of the reasons I don't do a lot of sweets.  But I have built up to doing them more often, a little at a time, and haven't had any problems....until a couple of weeks ago.  It was the same day as my last post where I drank a whole can of Coke while watching the KU game that afternoon.  I was fine, no issues.  Then that night, I could tell I was going to have trouble getting to sleep, so I decided to have a mixed drink before going to bed.  My go to drink is a fuzzy navel (orange juice and peach schnapps).  Yes, it is sweet, but I've had it before, and I've been fine.  I actually didn't have any orange juice, but had mango juice from my Smoothies.  I've mixed mango juice with peach schnapps before and had no problems.  As I was having the drink this time, I could tell it was starting to bother me.  I didn't finish the drink and went on to bed.  As I was laying in bed, I started having abdominal cramps really bad.  I got up and went to the bathroom.  Went back to bed, still cramping.  I got up again.  This time I was successful in having a bowel movement.  Went back to bed, still cramping.  I was laying there, curled up, in a lot of pain.  Got up and went to the bathroom one more time.  This time I had loose bowels.  After that, I actually felt better.  I was finally able to go back to bed and settle down and eventually go to sleep.  I think that was dumping syndrome.  My first experience with it and I hope my last.  I really don't want to go through that again.

I haven't had my peach schnapps and orange or mango juice again yet since then.  Not sure how long I'll wait before giving it a try.  One of the frustrating things with all this is something that can be fine one day, isn't another day.  You never know.

I did have a celebration with dessert this Friday night.  We had some friends over to play bridge and I made a frozen strawberry yogurt pie (Cool Whip, frozen strawberries, and strawberry yogurt, poured into a graham cracker crust and frozen).  I made it one other time since surgery.  That time I was tempted to eat the whole slice, but made myself stop at half.  This time I made it with Greek yogurt instead of regular yogurt.  I figured adding the protein would make it better for me.  It was still yummy and I did eat the whole slice this time.  No dumping.  No regrets.  I felt totally fine afterward.

There are leftovers from the pie in the freezer.  I may just have to go have a slice....

Random Ramblings

I'm way behind.  It has been 3 months since I've posted.  I've intended on posting several times over the last 3 months.  I've thought about what I would say several times.  I've just never actually sit down and typed anything.  So, I am doing that, today, now!

By August, I had lost enough weight (about 55 pounds) that some of my clothes didn't work anymore, or at least looked baggy.  I was thinking about going shopping for some new clothes, but then discovered I had some in the upstairs closet that I had "outgrown" prior to surgery, but hadn't gotten rid of.  I was enjoying my newfound wardrobe.

The first of September, we went to Mackinaw City, Michigan (my husband's hometown) for vacation.  My daughter and son-in-law went with us.  It was my son-in-law's first trip to the area and my biggest trip post-TG.  About 2 days before we left, I decided that I really should buy new jeans before we went.  The newfound wardrobe had included dress pants, but not jeans.  At home, I was still wearing a lot of shorts, but in northern Michigan, it would be cooler and I would want jeans.  While I was still able to cinch my jeans tight enough with a belt to wear around home and to work where I'm sitting at a desk most of the day, they wouldn't be as comfortable when we were walking around most of the day.  It took 3 stores, but I finally found some jeans that fit.  I had went from a size 18W down to a 14, the same size I had worn for much of my early adult life, but not anytime recently.  Having jeans that fit felt wonderful.  At that point, I didn't want to go back to wearing ones that were loose.

If you've ever been to Mackinaw City or Mackinac Island, you know the area is known for fudge.  There are fudge shops every other store.  The same company will even have two shops within a block of each other.  I learned while we were there that I can still eat fudge, caramels and other candy that is just too hard to resist.  I just have to pace myself.  I ate a lot of sweets on the trip, but I would have one piece and then an hour or two later have another piece, etc.  I never got sick by eating too much.

View of the Mackinac Bridge Walk from our hotel room

Part of the point of going to Mackinac over Labor Day weekend is for the Mackinac Bridge Walk. It's the one day you can walk across the 5 mile long suspension bridge.  Keith and I did it in 2011, the first time he had done it since he was a kid.  Mary and Nicholas wanted to do the walk, so the 3 of them did.  I decided that I wasn't up for that long of a walk and especially not for leaving the hotel at 6am, so I stayed behind and took pictures.  Mary ended up live streaming the walk on Keith's facebook page.  If you're interested, you can watch it at https://www.facebook.com/210773555600457/videos/1752567588087705/?fref=mentions and/or view Keith's pictures from the walk at http://www.mightymac.org/2017mackinacbridgewalk/index.htm

Mary and I went horseback riding on Mackinac Island.  The first horseback riding I've done in years.  I was definitely sore after the hour long ride, but glad I did it.











About the end of September or early October, I suddenly realized I was working full days regularly.  Because I have great flexibility in my job in regards to what time I get in and what time I leave, it had sneaked up on me and I had been doing it for a week or two before I really realized it.  I was also going for a walk or doing other activities in the evening, after putting in a full day, without being totally exhausted.  So, it took 7 months, but I was pretty close to "fully recovered"...whatever that means.  That doesn't mean there aren't still moments when I don't feel good, but in general, things are really good.

Before my surgery, Keith and I played tennis for exercise.  We hadn't played since my surgery, but finally played 3 or 4 times in October.  Then life got busy and crazy (normal) and the weather got cooler and we hadn't been playing or walking or doing any exercise.  I made a conscience decision to try to do better and this weekend has been nicer and we went for a walk on Friday and then played tennis today.

As I'm now down about 70 pounds. I am finding more and more of my old clothes that don't work anymore.  I'm enjoying buying new, although I still haven't done a ton yet because even though my weight loss has slowed down, it hasn't stopped and I don't want to spend a lot of money of clothes that I may not be able to wear in another 6 months or a year.

I'm looking forward to Thanksgiving this week.  This will be another test for me as I try to not put too much on my plate and not over eat.  We'll see how it goes.......

Sleeping in

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

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

Gaining Strength and Energy

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

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

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

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

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

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

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

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

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

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

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

Home Alone

Today is my first day home alone.  My husband is back at work.  Tomorrow will be two weeks after surgery, one week after getting out of the hospital.  I'm really amazed at how well I'm doing.  I have very little pain.  I haven't had any pain medication since before I got out of the hospital.  I have an occasional twinge or something, but that's really about it.  I'm tired.  That's to be expected.  I did have major surgery less than two weeks ago.

The only real challenge is learning to eat and drink.  And so far, that's going pretty well also.  The first couple of days were hard.  I wanted to turn back the clock and erase time and not do the surgery.  I've still got a lot to learn.  I'm supposed to eat every 2 hours.  I'm not supposed to drink more than 4 oz. with a meal.  I'm supposed to drink between meals, but you're supposed to wait before and after the meal and not drink.  It's so complicated.  I'm actually not even sure the math works.  Every meal and snack should include protein.  They also encourage protein drinks as meal replacements and as beverages between meals. I couldn't keep down the premade protein drinks I tried from the store.  The nutritionist said that wasn't unusual.  She suggested Carnation Instant Breakfast.  I'm not a big milk person, but those have been OK.  Since I'm home, I've also been making my own smoothies and adding whey protein powder.  Although I just realized I forgot to add it to the one I'm drinking right now.  Oh well....I'm still learning.  I did use Greek yogurt in it so it still has a little bit of protein.  So much to learn......

Home Sweet Home

We had the follow-up visit with the surgeon and the nutritionist on Thursday.  We were hopeful we would get released to return home on Saturday when we had tentatively booked our return flight for, knowing that was the best case scenario.  I so wanted to get home, I started even talking about trying to get the fight changed to Friday, if we got released on Thursday.  When we met with Dr. Mansfield Thursday, he was very tentative about releasing me.  He talked about how I was near the end of when leaks could happen, but they could still happen.  He talked about two blood test results that had changed more since I had been released from the hospital than he would like.  He discussed seeing what the nutritionist said and then deciding.  He knew we were determined to go home and the fact that we already had a flight booked helped.  He finally decided to retest the two blood results on Friday.  If they were stable or moving back to pre-hospital release numbers, he would let us go.  If they were trending further away, he would want us to stay another week.  Both test results had to do with hydration.  I felt like I was staying plenty hydrated, but the blood work wasn't necessarily supporting that.  I did everything I could to make sure I stayed hydrated the rest of Thursday and Friday.  At 2pm Friday, we had my blood drawn again.  Then it was wait for the phone call.  It was about 3:35 when Dr. Mansfield's assistant called.  The test results for Friday had been similar to Thursday's results, so I appeared to be stabilizing.  She asked me all sorts of questions about how I was doing.  She was happy with the answers and said I could go home Saturday.  Yay!  I knew Saturday would be a big day.  I knew travelling would be difficult.  But I knew recovering in my own house with my own bed and my own furniture and a full kitchen would be so much easier than recovery in a hotel room.

The travel was actually pretty easy and uneventful.  Our flight was at 10:45 so we left the hotel about 8:30.  Because of my weight restrictions, I could only carry my purse.  Keith had to lug both suitcases and both carry-ons, I felt bad for him, but he was great.  We had little line at the airport to check luggage or go through security.  The gate was close by so I was able to walk to it and didn't need assistance.  The flight was on time, less than 2 hours direct to Kansas City from Houston.  We had plenty of room so I was able to stretch my legs during the flight, important to not develop blood clots.  I didn't get up and walk as the physician's assistant had recommended, but just did so in my seat.  We made it to KC.  My oldest daughter, Jesi, picked us up in my van and we were home by 1:30.  And I got to sit on my couch in my living room.  It is wonderful!

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.

Slept Better

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.

Out of the Hospital

Yesterday was an adventure on so many levels!

I got released from the hospital a little after 11:00am, 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.