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!
Thursday, March 30, 2017
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.
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.
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!
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.
Tomorrow's a new day. We'll see what tomorrow brings.
Medication continued and Acid Reflux
A couple of things I forgot to mention in yesterday's post about medication:
After the surgery, I was also prescribed daily injections of enoxaparin. These injections given into my abdomen on either side of my incision were to reduce the chances of blood clots forming. Because I refused to poke myself with a needle, I made my husband do it for me. He would wake me at 7am before he went to work, give me the shot, and then I would go back to sleep. The last dose was yesterday. It was nice not having to be awakened for a shot today.
I have suffered with acid reflux for almost 30 years. Since I now have no stomach to form the acid, we were hopeful this problem would go away after surgery. It partially has, not necessarily entirely. I do still have some problems with belching, but don't have the acid as part of it. One way I know I have eaten enough (or too much) is I start belching. Since surgery, I am no longer on the pantoprazole that I had taken for years. I was also told not to take Pepcid Complete that I would sometimes take in addition. I was told I can take Tums or an equivalent. There have been just a few times that I have used Tums post surgery if I am belching a lot or if I need help just settling things down a little. I used to have lots of problems at night when I first laid down, that seems to be much better. Nice to know there's some fringe benefit to having your stomach removed!
After the surgery, I was also prescribed daily injections of enoxaparin. These injections given into my abdomen on either side of my incision were to reduce the chances of blood clots forming. Because I refused to poke myself with a needle, I made my husband do it for me. He would wake me at 7am before he went to work, give me the shot, and then I would go back to sleep. The last dose was yesterday. It was nice not having to be awakened for a shot today.
I have suffered with acid reflux for almost 30 years. Since I now have no stomach to form the acid, we were hopeful this problem would go away after surgery. It partially has, not necessarily entirely. I do still have some problems with belching, but don't have the acid as part of it. One way I know I have eaten enough (or too much) is I start belching. Since surgery, I am no longer on the pantoprazole that I had taken for years. I was also told not to take Pepcid Complete that I would sometimes take in addition. I was told I can take Tums or an equivalent. There have been just a few times that I have used Tums post surgery if I am belching a lot or if I need help just settling things down a little. I used to have lots of problems at night when I first laid down, that seems to be much better. Nice to know there's some fringe benefit to having your stomach removed!
Monday, March 20, 2017
Medication
As you might expect, you have to be careful about what kinds of medication you can take, both prescription and over-the-counter, after having a total gastrectomy. Since you have no stomach, things like extended release do not work. You can't take any capsules; you can't take anything with a coating. The only type of tablet you can take is one that is compacted powder with no coating. Some people have trouble swallowing pills at all. I've been able to swallow small ones. I haven't tried any large ones yet.
Some people prefer liquid medication. I've had problems with the liquid. The ones I've tried tasted nasty and came back up. First of all, I was given potassium as a liquid as I was being released from the hospital. It promptly ended up on the bathroom floor. They gave me pills and I was fine. They sent me home with liquid prescriptions of pain killer and stool softener. Fortunately, I haven't had to use the pain killer at home. I haven't used pain meds since the night before I was released from the hospital. I tried to use the stool softener the first few days, but had trouble keeping it down. We went to the drug store to get an over-the-counter stool softener in tablet form. We were very frustrated to find it doesn't exist. Everything is either a capsule or a coated tablet, nothing I could take. I eventually decided to just stop taking the stool softener and have done OK.
I also need to take a daily multi-vitamin. They recommend either liquid or gummy. I have found the gummy vitamins work quite well.
Some people prefer liquid medication. I've had problems with the liquid. The ones I've tried tasted nasty and came back up. First of all, I was given potassium as a liquid as I was being released from the hospital. It promptly ended up on the bathroom floor. They gave me pills and I was fine. They sent me home with liquid prescriptions of pain killer and stool softener. Fortunately, I haven't had to use the pain killer at home. I haven't used pain meds since the night before I was released from the hospital. I tried to use the stool softener the first few days, but had trouble keeping it down. We went to the drug store to get an over-the-counter stool softener in tablet form. We were very frustrated to find it doesn't exist. Everything is either a capsule or a coated tablet, nothing I could take. I eventually decided to just stop taking the stool softener and have done OK.
I also need to take a daily multi-vitamin. They recommend either liquid or gummy. I have found the gummy vitamins work quite well.
Saturday, March 18, 2017
More Food Choices
I'm starting to do a better job of having complete meals at home (meat, potatoes, vegetables). Sometimes it is leftovers from when we went out to eat, one set of leftovers can last me several meals. Sometimes it is something purchased at the meat counter at the local grocery store (our meat counter has preseasoned meats, precooked vegetables and others things, making home preparation very easy). Sometimes it is cooking fish that was purchased in the frozen section at the grocery store. But the point is, to start with, I was just doing things like a mini bagel with cheese and deli meats or something like that. That is fine, but it gets boring really fast. I realized I hadn't been having hot food at home. Having hot food at home added to the enjoyment of food and "flavors" that I talked about in my previous post about eating out.
I have also added some new meat to my repertoire. I have had pork chop and BBQ pork ribs. Both have went down fine and more importantly, stayed down. I take pretty small bites.
In general terms, I am quite pleased with my ability to eat "real food". Some people talk about difficulty with food getting stuck or having to puree food or chew, chew, chew. I don't feel like I've had any of those problems. I find myself taking bigger bites than I probably should and chewing less than I probably should, but most everything seems to go down fine. When I have had problems, I don't necessarily feel like it's directly related to what I'm eating or how I'm eating it. I think sometimes things just settle well and sometimes they don't. It seems I'm more likely to have problems with Carnation Breakfast with milk (which usually is fine) than I am with food items.
I'm also getting pretty good about anticipating how much food I can eat. I can usually judge it pretty close and put the right amount of food on my plate. The amount of food I am eating at each sitting is also expanding. Also, there is more differentiation between "meals" and "snacks". The first couple of weeks, I was eating every 2-3 hours, but you couldn't tell if I was eating lunch or supper or a snack in between. Recently, it is often more like a meal twice a day (excluding breakfast) and then snacks in between.
I've still got a long ways to go....but I'm getting the hang of this thing.
I have also added some new meat to my repertoire. I have had pork chop and BBQ pork ribs. Both have went down fine and more importantly, stayed down. I take pretty small bites.
In general terms, I am quite pleased with my ability to eat "real food". Some people talk about difficulty with food getting stuck or having to puree food or chew, chew, chew. I don't feel like I've had any of those problems. I find myself taking bigger bites than I probably should and chewing less than I probably should, but most everything seems to go down fine. When I have had problems, I don't necessarily feel like it's directly related to what I'm eating or how I'm eating it. I think sometimes things just settle well and sometimes they don't. It seems I'm more likely to have problems with Carnation Breakfast with milk (which usually is fine) than I am with food items.
I'm also getting pretty good about anticipating how much food I can eat. I can usually judge it pretty close and put the right amount of food on my plate. The amount of food I am eating at each sitting is also expanding. Also, there is more differentiation between "meals" and "snacks". The first couple of weeks, I was eating every 2-3 hours, but you couldn't tell if I was eating lunch or supper or a snack in between. Recently, it is often more like a meal twice a day (excluding breakfast) and then snacks in between.
I've still got a long ways to go....but I'm getting the hang of this thing.
Wednesday, March 15, 2017
Pathology Results
Finally talked to the surgeon today and got the pathology results. Were supposed to take a week, took three, not sure why it took so long. Reminds me of the genetic test results in the beginning that took two weeks longer than they were supposed to.
The results were about what I expected. 10 spots were identified: 8 were in situ which means they are more superficial, not even advanced as far as T1A tumors; 2 were intramucosal, which is T1A. T1A is no problem, it is noninvasive. If they were T1B, that would mean they had invaded into the submucosa, but that was not the case. Since the entire stomach was removed and nothing was invasive, nothing more needs to be done.
What these results also do is give me the reassurance that I made the right decision to have the prophylactic total gastrectomy. It could be that I could have lived the rest of my life and these would never have grown to be invasive T1B tumors, but it could also be that they did and they weren't detected until it was too late. That is a chance I'm glad I chose not to take.
The results were about what I expected. 10 spots were identified: 8 were in situ which means they are more superficial, not even advanced as far as T1A tumors; 2 were intramucosal, which is T1A. T1A is no problem, it is noninvasive. If they were T1B, that would mean they had invaded into the submucosa, but that was not the case. Since the entire stomach was removed and nothing was invasive, nothing more needs to be done.
What these results also do is give me the reassurance that I made the right decision to have the prophylactic total gastrectomy. It could be that I could have lived the rest of my life and these would never have grown to be invasive T1B tumors, but it could also be that they did and they weren't detected until it was too late. That is a chance I'm glad I chose not to take.
Tuesday, March 14, 2017
More About CDH1
The E-Cadherin gene or CDH1 is a tumor suppressor protein that maintains tissue integrity as it mediates cell-cell adhesion. It helps to regulate cells so that they don’t grow out of control or grow too rapidly. For those who care, the CDH1 gene is located on chromosome 16q22.1 and it contains 2.6 kb of coding sequences with 16 exons.
In 1998, Dr. Parry Guilford first linked inherited mutations in the CDH1 gene with familial gastric cancer in three Maori families in New Zealand. Many subsequent studies have been done and published papers can be found online. Depending on your biological and medical knowledge, some are easier to read than others. Because this is such a rare mutation, many of the studies have very small sample sizes and with each new study, the results change, sometimes considerably.
My gene mutation is c.2287G>T. It is a nonsense truncation in Exon 14. My results, dated May 22, 2015, indicate a 80% cumulative risk of diffuse gastric cancer by age 80 for both men and women, as well as a 39%-52% risk of lobular breast cancer for women. There also may be an increase risk for colon cancer, but no percentage was listed in my test results. In updated clinical guidelines, found in several articles online published February-May 2015, the cumulative risk for diffuse gastric cancer by age 80 is listed as 70% for men and 56% for women and the risk of lobular breast cancer is listed as 42%. According to those guidelines, there is currently no evidence that the risk of other cancers is significantly increased in individuals with a CDH1 mutation.
Whether the risk is 80% or 56%, or something in between, the risk is high when you are talking about your life. The recommendation of all the studies is that individuals who tested positive for a CDH1 mutation should consider prophylactic gastretomy regardless of other screening. However, if the individual chooses not to have the gastrectomy or delays the gastrectomy, annual upper endoscopy is recommended with a minimum of 30 random biopsies. However, the literature goes on to say that because of the very focal nature of these endoscopically invisible lesions, it is quite possible that they will not be detected by random biopsies. So have the endoscopy, but more than likely, it won't find anything.
In almost 100% of the cases where a prophylactic total gastrectomy has been performed because of a CDH1 mutation, signet-ring cell carcinoma has been found in the pathology after the surgery, meaning that the patients are considered to have Stage 1 cancer. However, because it is early stage and contained within the stomach, the surgery is curative and no further treatments are needed.
In 1998, Dr. Parry Guilford first linked inherited mutations in the CDH1 gene with familial gastric cancer in three Maori families in New Zealand. Many subsequent studies have been done and published papers can be found online. Depending on your biological and medical knowledge, some are easier to read than others. Because this is such a rare mutation, many of the studies have very small sample sizes and with each new study, the results change, sometimes considerably.
My gene mutation is c.2287G>T. It is a nonsense truncation in Exon 14. My results, dated May 22, 2015, indicate a 80% cumulative risk of diffuse gastric cancer by age 80 for both men and women, as well as a 39%-52% risk of lobular breast cancer for women. There also may be an increase risk for colon cancer, but no percentage was listed in my test results. In updated clinical guidelines, found in several articles online published February-May 2015, the cumulative risk for diffuse gastric cancer by age 80 is listed as 70% for men and 56% for women and the risk of lobular breast cancer is listed as 42%. According to those guidelines, there is currently no evidence that the risk of other cancers is significantly increased in individuals with a CDH1 mutation.
Whether the risk is 80% or 56%, or something in between, the risk is high when you are talking about your life. The recommendation of all the studies is that individuals who tested positive for a CDH1 mutation should consider prophylactic gastretomy regardless of other screening. However, if the individual chooses not to have the gastrectomy or delays the gastrectomy, annual upper endoscopy is recommended with a minimum of 30 random biopsies. However, the literature goes on to say that because of the very focal nature of these endoscopically invisible lesions, it is quite possible that they will not be detected by random biopsies. So have the endoscopy, but more than likely, it won't find anything.
In almost 100% of the cases where a prophylactic total gastrectomy has been performed because of a CDH1 mutation, signet-ring cell carcinoma has been found in the pathology after the surgery, meaning that the patients are considered to have Stage 1 cancer. However, because it is early stage and contained within the stomach, the surgery is curative and no further treatments are needed.
Tuesday, March 7, 2017
Going Out to Eat
Went out to eat at a restaurant tonight. 3rd attempt, 3rd success. I hope we can keep those odds going. Haven't ventured far on the menu selection. Have had grilled salmon twice and grilled red snapper once. Grilled fish seems to do pretty well. Have had some sort of potato and a little vegetable each time. It works for Keith to get a meal and for me to just eat a few bites of it.
To give some background, Keith and I historically eat out all the time. I'm not talking just a few times a week, I'm talking basically every meal. My late husband, Richard, and I ate out a lot, but not like this. Richard did a lot of the cooking also and did almost all of the kitchen clean-up, When he died, one way that made it easier to cope was to eat out. Loading the dishwasher was one of my trigger points as it was something he always did. If we ate out, there were less dirty dishes. I totally got out of the habit of cooking.
I was starting to feel guilty about eating out all the time and was trying to cook more about the time Keith and I started dating. Between going out to dinner on dates and then going out to check out restaurants for his kansastravel.org website (he reviews locally owned restaurants and all sorts of attractions from museums to zoos to everything), we just kept going out more and more. After we got married, it continued. With both girls gone from home, going out to eat is just so much easier than eating at home. Others may not understand it, but it was our routine.
Facing this surgery, that was one of the things we wondered about. We knew we would be eating at home more. The thing is, I don't even hardly remember how to cook, not that I was ever a very good cook. The rare occasion we do eat at home, Keith often cooks and does one dish type meals that he did as a bachelor. If I cook, it tends to be separate dishes, but nothing fancy. Often from freezer to table.
With the post-gastrectomy diet, I have to eat every 2 hours. I eat very little at each time. A typical "meal" might be 1/4 or 1/2 of a mini-bagel, 1/2-1 oz of low-fat cheddar cheese, 6-10 bites of chicken. I've been eating all week on a rotisserie chicken Keith bought Sunday. The food's fine, but there's really not much to it. There's not the flavors that you get in having a "real meal". I get the flavors by going out to eat. I don't get those flavors from eating at home. Maybe eventually, I'll figure out how to cook again and put flavors in my own food, but right now I don't have the energy for it. And if eating out works in this new norm, maybe we'll just go back to eating out. But right now I don't want to try it every day. I am thankful that it is an option and seems to be working so far. I know lots of people haven't done as well as I have at this point. I'm thankful that I am able to consume real food (although limited selections, still real food).
I haven't tried any food yet that my body absolutely hasn't tolerated. The biggest problem I've had were with the protein shakes and some other beverages I tried the first couple of days. The Carnation Instant Breakfast and Smoothies with added Protein Powder (when I remember to add it) work. I use them as supplements between meals which give me both the protein as well as the liquid that I need to stay hydrated. I'm not sure if I'm following exactly the schedule of what I'm supposed to be doing, but I feel like it's at least pretty close. So far so good.
To give some background, Keith and I historically eat out all the time. I'm not talking just a few times a week, I'm talking basically every meal. My late husband, Richard, and I ate out a lot, but not like this. Richard did a lot of the cooking also and did almost all of the kitchen clean-up, When he died, one way that made it easier to cope was to eat out. Loading the dishwasher was one of my trigger points as it was something he always did. If we ate out, there were less dirty dishes. I totally got out of the habit of cooking.
I was starting to feel guilty about eating out all the time and was trying to cook more about the time Keith and I started dating. Between going out to dinner on dates and then going out to check out restaurants for his kansastravel.org website (he reviews locally owned restaurants and all sorts of attractions from museums to zoos to everything), we just kept going out more and more. After we got married, it continued. With both girls gone from home, going out to eat is just so much easier than eating at home. Others may not understand it, but it was our routine.
Facing this surgery, that was one of the things we wondered about. We knew we would be eating at home more. The thing is, I don't even hardly remember how to cook, not that I was ever a very good cook. The rare occasion we do eat at home, Keith often cooks and does one dish type meals that he did as a bachelor. If I cook, it tends to be separate dishes, but nothing fancy. Often from freezer to table.
With the post-gastrectomy diet, I have to eat every 2 hours. I eat very little at each time. A typical "meal" might be 1/4 or 1/2 of a mini-bagel, 1/2-1 oz of low-fat cheddar cheese, 6-10 bites of chicken. I've been eating all week on a rotisserie chicken Keith bought Sunday. The food's fine, but there's really not much to it. There's not the flavors that you get in having a "real meal". I get the flavors by going out to eat. I don't get those flavors from eating at home. Maybe eventually, I'll figure out how to cook again and put flavors in my own food, but right now I don't have the energy for it. And if eating out works in this new norm, maybe we'll just go back to eating out. But right now I don't want to try it every day. I am thankful that it is an option and seems to be working so far. I know lots of people haven't done as well as I have at this point. I'm thankful that I am able to consume real food (although limited selections, still real food).
I haven't tried any food yet that my body absolutely hasn't tolerated. The biggest problem I've had were with the protein shakes and some other beverages I tried the first couple of days. The Carnation Instant Breakfast and Smoothies with added Protein Powder (when I remember to add it) work. I use them as supplements between meals which give me both the protein as well as the liquid that I need to stay hydrated. I'm not sure if I'm following exactly the schedule of what I'm supposed to be doing, but I feel like it's at least pretty close. So far so good.
Monday, March 6, 2017
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......
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......
Saturday, March 4, 2017
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!
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!
Friday, March 3, 2017
Venturing Out
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.
Thursday, March 2, 2017
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.
Wednesday, March 1, 2017
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.
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.