How Breast Cancer Saved My Life: CDH1 – The gene nobody's heard of
From Breast Cancer to CDH1 to a Prophylactic Total Gastrectomy to Living Life Without a Stomach
Wednesday, February 21, 2024
7th Anniversary
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.
Wednesday, February 22, 2023
6th Anniversary and Facebook Memories
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.
Friday, July 29, 2022
Colonoscopy
Monday, February 21, 2022
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!
Sunday, February 14, 2021
Let's Talk Dessert
Let’s talk dessert. Valentine’s Day seems like a good day to do that.
I continue to look for other desserts with high protein and low sugar, but these are definitely the best I have found so far. The great thing is that as well as me getting to enjoy a whole dessert, my friends and family like them too.
Wednesday, August 12, 2020
CDH1 and COVID-19
2020 has been a year of graduations, not the high school and college graduation ceremonies that have been canceled, postponed, or made virtual, but leaving behind all things related to my cancer…except those that can’t be left behind (like not having a stomach).
This whole journey started in April 2015 when I was
diagnosed with breast cancer. That May I found out I was positive for
CDH1. I had a double mastectomy in June
2015 and then a total gastrectomy in February 2017. That’s the background info.
Now to the graduations. I’ve already written about my follow-up at MD Anderson
in January of this year. At that appointment, Dr. Mansfield said I didn’t need
to come back and see him anymore, that I could be monitored annually by my
primary physician. Graduation #1.
Next up was the oncologist in June. I was actually hoping I could skip that
appointment, but I’ve always been one that if a doctor wants to see me, I go.
This was my third oncologist in five years. I was going to the same cancer center,
but the previous two doctors had left for one reason or another. My breast
cancer was ductal carcinoma hormone-receptive positive, so I was prescribed a
hormone blocker, letrozole, for five years. I had always assumed that once the
five years was up, I’d be done with the oncologist. Since five years would be
in June and I had enough drugs to get me through till past then, I called the
office and spoke with the nurse to see if I needed to bother keeping my
appointment. My breast surgeon who I saw in April, and will continue to see,
actually suggested this. The nurse checked with the oncologist and he said he
still wanted to see me, so I went. I met my third oncologist, he didn’t do any
bloodwork or anything, we just chatted, and he released me. I don’t need to
follow-up with him anymore. I did like him, and I did appreciate something he
said. He said he would still be my doctor and was still part of my medical
team, even if I wasn’t seeing him and that if I ever needed him, feel free to
give him a call. I don’t expect to need him, but I still appreciated that
sentiment. Graduation #2.
The oncologist told me to finish the prescription I had and
then stop taking the letrozole. Since I was receiving a 90 day mail order
prescription, that actually lasted me quite awhile. I just finally took the
last pill a week ago. Graduation #3. The only regular medication I now take are
vitamins.
As well as documenting my CDH1 journey, I feel compelled at
this time to document the COVID-19 journey that we are all on and this blog
seems as good of place as any to do that. This isn’t so much for those reading
it now but more for the memories later of what we went through and for future
generations that will read about 2020 in history books. I’m sure you, like me,
never believed that we would be living in a global pandemic.
March started out normal enough. My Kansas Jayhawks were
ranked #1 and were most people’s favorite to be National Champions. We were Big
12 Conference Champions again (after ending the 14 year streak the previous
year) and were looking forward to the Big 12 Conference tournament and the NCAA
tournament.
My best friend from college had ancestors from Fredonia,
Kansas, the same small town in southeast Kansas that my parents were originally
from, that I’ve had family in for generations, and where I still have family
living. We had talked since college about going down there and never had. The
last time we were together, we had decided that we were going to do it over her
spring break this year. She had information about where the farm was near
Altoona, cemeteries in Altoona and Fredonia she wanted to visit, and then we
were going to do research at the Wilson County Historical Society museum in
Fredonia. She is a professor at the University of South Dakota and her spring
break was the week of March 9. We decided to go down Tuesday morning and spend
the night, coming back Wednesday afternoon.
We had a great time. It was fun to get away and spend time
together. She learned some information about her ancestors. In doing the
research, I also came across names in my family tree multiple times and the
trip reignited the love of genealogy in me. It was a great trip all the way
around, but the best part was just spending time together. Little did I know
how soon and how much things were about to change.
Before our trip there
had been some news about this coronavirus that had started in China and there
were a few cases in the US, especially in Seattle, California, and New York,
but nothing close to the Midwest. As a Department Chair, my friend started
receiving texts on Tuesday about being prepared for possible online learning
after spring break. That was my first indication that maybe this was turning
into something bigger than we had initially thought. Then, just before the
first games in the Big 12 tournament Wednesday night, the Big 12 announced that
the games starting on Thursday would proceed, but with no fans in attendance. Then
on Thursday, just before the games were to begin, they canceled the tournament
all together. Many other conferences did the same thing, some in the middle of
a game. Later Thursday, the NCAA also canceled the NCAA tournament meaning the
Jayhawks would not be able to compete for the National Championship they were
favored to win. Disappointing for sure, but this was the reality check that
this virus, now called COVID-19, was much bigger than we had realized. The
World Health Organization declared it a pandemic on Wednesday and a national
emergency was declared on Friday, March 13.
When I returned to work at the church on Thursday, everything
went quickly into COVID-19 mode. At first things seemed normal, but that all
started rapidly changing. Every hour was like a day with things changing so fast,
including the changes in sports mentioned above. My email inbox started filling
with articles about the coronavirus and how to prepare. We had a funeral
scheduled for the following Monday. The family had come to town to meet with
the pastor to make final plans. They ended up deciding to postpone the funeral
as they had family traveling from Seattle and other areas more affected. They
thought they would wait till June when it would all be behind us. (It is now
August and we haven’t yet scheduled the funeral.) We had a youth group from
Oklahoma planning on coming to Kansas City and staying at the church for a week
of mission the following week. Early Thursday afternoon, I had an email they
were still coming. By late afternoon, they had canceled. That’s how rapidly
things were changing.
We still had in-person worship on Sunday, March 15, although
some area churches didn’t. We did make modifications such as no Passing of the
Peace, etc. Our attendance was half what a typical Sunday would be. By Monday,
the decision had been made to cancel all in-person meetings, events, and
worship at the church, so much of my time was spent getting that communicated
to our members and other groups that use the building, as well as assisting
with plans for online worship the following week. The original plan was to keep
the church office open.
That changed over the weekend when Johnson County declared a
Stay-at-Home order effective Tuesday, March 24, followed by the State of Kansas
on March 30. We had one day in the office on Monday to prepare to work from
home. I did occasionally go into the office to collect mail and other needed
items as well as to do some essential work that couldn’t be done from home.
That continued until May 11 when the Stay-at-Home order was lifted and the church
office reopened.
When everything was being shut down in March, we thought it
was all temporary and things would return to normal soon, at least by May or
June. The more time went on, the more we discovered that life wasn’t returning
to normal anytime soon. Things started reopening, not because anything was
better, but because there was pressure to open the economy. We had to make
adjustments and find the “new normal” – social distancing, wearing masks, all
these were part of the new normal. No one knows when, or if, life will return
to what we think of as normal.
While we couldn’t have in-person worship, we developed other
ways to reach the congregation, mainly though email and social media. One of
the things we did was send out a daily devotion via email and it was also posted
on Facebook.
When I reflected on the devotion I would write, I realized
life being uncertain and developing a “new normal” was something I was familiar
with. When I was facing my gastrectomy a little over 3 years ago, life on the
other side was very uncertain. I knew things would never be “normal” again and
didn’t really know what the “new normal” would look like. Sounds a little like
how many of us have felt the last 5 months. Life on the other side of COVID-19
is uncertain. We’re not sure that our life will ever be “normal” again and are
wondering what the “new normal” will look like.
We returned to in-person worship on June 21. It has very
little resemblance to worship before COVID-19. In the summer, we always have
Worship in the Park, an 8:00am outdoor worship service. It has been the most
popular worship service this year. It had 51 people the first week and has
consistently had in the 30s or 40s, a significant increase over last year’s
numbers. The two worship services in the sanctuary have each been having less
than 20 people, that’s 1/3 to 1/4 the number pre-COVID. People are obviously more
comfortable worshiping outside than inside.
The two sanctuary services are also live streamed. Congregational
singing is not allowed at any of the worship services, the hymns are sung by a
soloist or a small group of no more than 3. At the park, people are asked to
allow at least 6 feet between parties and they usually allow even more. In the
sanctuary, every other pew is roped off and families are spaced out. Many
churches have made the news by being a place the virus has spread. We don’t
want to make the news.
We are living in a time I never thought I would experience
in my lifetime. I still have a hard time believing it, but here we are. We do
what we can to be cautious and stay safe, while not being fearful. In his
sermon last Sunday, our pastor talked about the difference between caution and
fear. The scripture was Matthew 14:22-33, the story of Jesus walking on the
water and how Peter got out of the boat with faith, but then started to sink
when fear overcame him. We need to remember during this crazy time we find
ourselves in that God always walks beside us and guides us, if only we let him.
We don’t know when this will all end, probably not till
after there’s a vaccine, which could be a year yet. In the meantime, we try to
figure out what the new normal is and to stay safe and healthy. That is my prayer
for anyone reading this blog.
Friday, February 21, 2020
3rd Anniversary
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.
Sunday, January 5, 2020
Goodbye Houston
We went over early on Thursday for my blood draw appointment to increase the likelihood of them actually having the results before my appointment. Dr. Mansfield was also running behind so they had all the results except one at the beginning of the appointment and got that one before we were done. I was within normal range on everything. My B12 count was normal, but at the low end of normal. They suggested I increase my dosage to two sublingual tablets a day instead of just one. They also recommended getting a bone density scan done as they like to do that around 3 years after total gastrectomy, which is coming up soon. But that can be done in Kansas City with my primary care doctor. I will also want to continue having blood work monitored annually, but that can all be done up here. I'm done with follow-up visits to MD Anderson.
Four years ago I had never been to Houston. Now, 9 visits later, it was time to say goodbye.
I was excited to learn that Dr. Mansfield and a team from MD Anderson is doing a research study to put together a CDH1 Gene Registry to track those with the gene mutation and their medical information, family history, etc. Hopefully, through this research, they will be able to learn more and eventually people with the mutation will have more information and more options when determining whether or not to have a total gastrectomy. One of the most frustrating things when I was first diagnosed was that there was very little information available. I am thrilled to be a very small part of changing that. With this study, they will continue to be updated on my medical history and be in touch with me yearly for up to 11 years, but there is still no need to return to MD Anderson for follow-up.
So, GOODBYE HOUSTON!
Sunday, August 18, 2019
Traveling without a Stomach
Smoked trout dip with pita bread and carrots |
In just two days, most of the 10 oz. package of dried strawberries are gone. |
Friday, July 19, 2019
Lenexa UMC 150th Anniversary
Me presenting a copy of the book to the mayor. |
Thursday, February 21, 2019
Two Year Anniversary
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!
Sunday, July 22, 2018
Daily Food Routine
I thought it might be good to share my daily routine as far as food intake. I am 17 months out from my surgery (and that's how I usually refer to it, "my surgery"; I've had various surgeries over the years, but this one is just "my surgery" and life is defined as before and after surgery, just like before and after children). But anyway.....
Before surgery, I was never a big breakfast eater. I would usually eat a granola bar on the way to work. Now I emphasize protein every time I eat. I don't count calories or count grams of protein, but I try to get protein with every meal and every snack...and it seems to be working. Granola bars do not have very much protein, so they have went bye-bye. They have been replaced with Kellogg's Special K Protein cereal for breakfast. I have found that I like the Cinnamon Brown Sugar Crunch flavor straight out of the box. There are 7 grams of protein per 3/4 cup serving. I've actually never measured how much I eat, but I'm guessing around a serving. I carry it in a zip-lock bag and eat in on the way to work, usually finishing at work since I only have a 2 mile drive to work. I often don't eat breakfast until close to 9:00 (I'm not a morning person) and I usually eat lunch at 11:30, so I often don't have a morning snack. If I do have a morning snack, I like Atkins Peanut Butter Granola protein bars. They have 16 grams of protein. A lot of the snacks I eat later in the day, I don't like to eat in the morning; this is one of the few things I enjoy in the morning besides my cereal.
As I said before, I usually eat lunch around 11:30. My lunch is, more often than not, leftovers that I bring to work and heat up in the microwave. It includes some sort of meat, potato, and sometimes a vegetable. It also includes unsweetened iced tea. Before lunch, I drink water periodically, but then I drink tea with lunch but not too much) and will continue drinking it all afternoon.
In the afternoon, I have several snacks. Using the criteria of eating every 3 hours, it would only be one snack, but instead I tend to eat 2 or 3 snacks during the afternoon, eating every hour or two. At work, I keep a supply of cheddar cheese sticks, mozzarella string cheese, pretzels (that I eat with the string cheese) and protein bars. Protein bars vary a lot in the number of grams of protein. For the most part, I have stopped buying the ones that are only 7-10 grams figuring I might as well eat one that's 20 instead. I particularly like Pure Protein. They are small bars (I never have problems finishing them which does sometimes happen with bigger bars), but have 20-21 grams of protein. Costco sells a variety pack with 21 bars of Chocolate Peanut Butter, Chewy Chocolate Chip and Chocolate Deluxe. Others that I particularly like are Cliff Builder's Protein-Chocolate Mint or Chocolate Peanut Butter (20g), ProMax-Double Fudge Brownie (20g) and Balance Chocolate Mint Cookie Crunch (14g). I also really like Atkins Caramel Chocolate Nut Roll Bar. It's only 7 grams of protein, but I still buy it because it's almost like eating a candy bar.
I also always carry snacks in my purse. I usually have peanut butter filled pretzel nuggets and nuts, either regular mixed nuts, peanuts or honey roasted peanuts. Lately, I've been mainly doing honey roasted peanuts. I didn't do them for quite some time, afraid that they would be too much sugar. I don't know if I would have had troubles earlier, but I've had no problems now. I stopped doing mixed nuts because I don't like cashews and I got tired of the number that were in the mixed nuts.
At home on weekends, as well as doing the above snacks, I do a variety of cheeses with crackers. I'm so glad I don't have any dairy issues as I know some people do after TG as cheese is a big part of my snacking.
I eat a variety of things for supper. There really isn't anything I won't eat, but grilled fish and chicken are my "go tos". I also eat steak, hamburger, pork, etc. We often go out to eat, which almost always means I will have leftovers for lunch the next day as American restaurants serve too much food. If I fix my own dinner at home, I will often eat an entire frozen fish filet or chicken breast, partially because the serving size is smaller and partially because I don't fix as many side dishes. If I need leftovers for lunch, I'll go ahead and fix an extra serving.
I had been having a smoothie almost every night as I found it did better than many other snacks in the evening. My typical make your own smoothie is 2 ice cubes crushed in the blender, add some juice (strawberry watermelon or mango), 4 tablespoons whey protein powder, 1 container Greek yogurt (any flavor), frozen fruit (some combination of mangos, peaches, and berries) blended all together. Just over the last few months, I have found myself having other snacks in the evenings and doing less smoothies, although I still like the smoothies too. I particularly do a lot of the peanut better pretzels and honey roasted peanuts in the evening.
It's nice that I've pretty much fell into a routine and have a system, but at the same time, I'm not afraid to experiment and venture outside of it. Occasionally, things don't go well, but more often than not, they do.
Sunday, April 8, 2018
Drinks, Sweets and Dumping
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....
Sunday, March 25, 2018
Have a Coke
Before today, I had had 2 cokes in the last year. Both times I had about half of a 12 oz. can. I don't know if it's been all the Coke commercials which watching the NCAA tournament or what, but I decided I needed to have a Coke. Partially, I wanted to have one at home so I would know if it was safe to have one while I was away from home. If I'm at a party or something, iced tea isn't always an option. I need to know if I can drink a whole Coke. So this afternoon, while watching KU play Duke in an incredible game and advance to the Final 4, I had a Coke. I drank the whole 12 oz.
Truthfully, it didn't taste all that great. When you've got used to drinking drinks with no sugar, it just tastes sort of weird. But I did OK. My left side actually hurts a little. Not a lot, but a little. Maybe I should describe it more as just a little discomfort. I actually have had this happen several times over the last few weeks after I eat. I don't know what causes it. It's not that bad. I live with it. It passes in a few minutes and I'm fine.
I'm still going to drink lots of iced tea. That's not going to change. But if I want to have a Coke or if iced tea isn't an option, I can have a Coke!
Tuesday, February 20, 2018
One Year!
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.