OVER SEAS?!?!!? :) :) :)

BEST Christmas present to date!!! My story is being shared across the WORLD!!! Here are just a couple places I have found my story has shared to out of MANY!!! :)

All I have wanted to do, since day one, is help even just one person....I've said it before and I'll say it, again, KNOWLEDGE IS POWER!!!

DAILY MAIL

After my story was published in our local newspaper, it has been shared and published in other newspapers here in North Dakota and it just posted to the Billings (Montana) Gazette the other day, too. 

From there, I had an editor out of New York contact me to share my story with her, too.  Here is what she came up!! :)

http://www.dailymail.co.uk/health/article-5203595/Woman-removes-stomach-prevent-developing-cancer.html

13 YEARS

13 years ago this HORRIFIC cancer (HDGC) took my moms life.
13 years ago I became an orphan (having already lost my dad when I was 12 years old).
13 years ago...my life changed forever.

I miss my mom and think of her EVERY.SINGLE.DAY! I am so thankful for her as I wouldn't have had this option to be preventative without her going through what she did. It sure doesn't seem like it has been 13 years, but my heart still aches none the less.

RIP Mom

 One of our last pictures together (she was SO sick)

 Summer before she past

 My mom and I when I was younger- she loved taking us sledding

 and she HATED taking pictures, but I'm glad I would force her

So beautiful- inside AND out (high school photo)

my FAVORITE picture of my mom and I (I can feel the love in this photo)

I'M NOT "MOST PEOPLE"

Grabbing food on lunch and they ask, "Would you like a medium or large?" I ask, "Can I get a small?" "Most people do a medium or a large, but yes you can." Well good...cuz I'm not "most people." lol
#nostomachnoproblem

B12 COOL KIDS CLUB

B12 COOL KIDS CLUB!!!!

I didn't realize B12 was becoming such a cool thing to do. I just gave myself my injection that I HAVE to have as you cannot absorb B12 without a stomach and Sean let me know he heard an ad on the radio yesterday offering, "FREE B12 INJECTIONS" at a local place here in town. Glad to know I was in the cool kids CLUB before it was cool.   Errrrrbodys doin it.

SEAHORSES

 

You say SEAHORSE, I say SOLD!!!
I'm such a sucker for these cute stomachless animals!!! Naturally, I HAD to get this for Paige!

HEALTH CENTRAL

I was able to share my story with Elizabeth Millard with Health Central.  I think the story turned out nicely!! :)  Feel free to check it out here.....

https://www.healthcentral.com/article/heredity-diffuse-gastric-cancer-genetic-link?ic=edit

MAMMO

Along with this crazy mutation comes the increased risk of lobular breast cancer. There are a LOT of breast cancer patients on my mom's side of the family...lobular included.

Because of the increased risk, every 6 months I rotate between doing a mammogram and MRI.

 FRIDAY was mammogram day. It went well and I had no concerns. If anything shows up, I will get a call...if not, a letter. Although mammograms aren't the most fun thing to do in the world, I'm thankful for these means of being preventative until or if I decide a double mastectomy is something I want to do. Here's to hoping I get a letter and not a call!!!

DIET PEPSI

MOST foods and drinks I don't have an issue with as long as I take my time and/or chew properly.

Diet Pepsi is NOT included in this!!! Every now and then, I crave a Diet Pepsi (regular sodas have WAY too much sugar for this stomachless gal) and will give it a shot as things that didn't work yesterday, sometimes will work today and visa versa. NOPE, not Diet Pepsi. I SWEAR this is the MOST carbonated and fizzy beverage IN THE WORLD (other diet sodas do NOT bother me)...an...d not just any Diet Pepsi, it has to be BOTTLED Diet Pepsi. The PAIN that comes from the amount of carbonation is AWFUL. So, why do I continue to try it from time to time?? I have NO idea...maybe it comes from the fact that I CAN'T have it, so I want it that much more. I'm hoping my system will maybe just work itself out and let me have it so I can get off this bottled Diet Pepsi kick!

 

SEAHORSE CHRISTMAS ORNAMENT

 

Did you know that seahorses don't have stomachs, either??

LOVE this addition to my Christmas tree! Most beautiful seahorse I've ever seen!

HAPPY THANKSGIVING!!!

I overdid it, but man oh man was it worth it!!!

Happy Thanksgiving!!! My heart has never felt as full as it does this year. I have so much to be thankful for and that feels so good!!!!

FINDING YOUR WHY

When it, sometimes, feels like the whole world is against you with this mutation, you MUST find your WHY.  We talked about this a LOT in LA at the Spotlight on Gastric Cancer- A Night of Healing.

This little girl right here, Miss Paige, is MY WHY.  Without her, I'm not sure I would have done this surgery, let alone tested for the CDH1 mutation.  I can't say, for sure, that I wouldn't have done either, but I know that SHE is my reason behind wanting to be here for the long term, if possible.  I hope and pray that I will be able to watch her grow into a beautiful young lady, graduate high school and college, get married, and have babies.  These are all things my mom was unable to be here for due to Hereditary Diffuse Gastric Cancer (HDGC) taking her life.  So, if you choose NOT to test or do this surgery for yourself and you know there is the chance of testing positive, find your WHY and make that your primary focus.  I have not regretted my decision since day one and am SO thankful that I was given this option to be preventative.  I hope I can stick around for a very long time for this little cutie in the picture!  What or who is YOUR why?

 

TWO SPOTS OF CANCER FOUND

TWO SPOTS OF CANCER FOUND!!!
My cousin, Stacie , had her total gastrectomy (stomach removed) 3 weeks ago TODAY. She just got home over the weekend due to some complications. She had an endoscopy in October and it came back CLEAR. ONE....I REPEAT ONE MONTH LATER...she has her TG and pathology shows TWO spots of CANCER!!!! No chemo or radiation needed, but she will still need to meet with an oncologist. Just think if she would have waited another 6 months to do another endoscopy and/or surgery where she might be. This cancer is so quick to spread and the only way to detect it is with an endoscopy as it doesn't show up on any kind of x-ray or scan! I am so happy and thankful, even with the complications she has had, that she chose to do this surgery and I'm sure she agrees!

CHECKOUTS

Pushing that B12 at the checkouts!! HAHA!

B12

One of my most favorite days of the month...not because I enjoy giving myself an injection, but because I look forward to the energy I will gain from my B12!! I give myself injections 1x/month.
Did you know your body NEEDS B12 to function and without a stomach you are not able to absorb this very important vitamin? Injections or sublingual B12 tablets are CRUCIAL for the stomachless!! It takes about 2 years for your body to deplete what you have stored up for B12 and when that 2 years hits, you're pretty much a walking dead zombie and playing catch-up can be a nightmare! B12 is one thing I am very thankful for!!!!

A NIGHT OF HEALING- NO STOMACH FOR CANCER

Here is the video of my speech from the No Stomach for Cancer- A Night of Healing.

It got cut off at the end, so the ending is below.... :)

Having supper with stomachless friends while in LA was awesome AND hilarious at the same time!!!

The waiter comes to our table to take our order. Nicole and I decided we should share the 1/4 chicken and sides. He couldn't believe this and talked us into splitting the 1/2 chicken and sides instead (we should have stuck with splitting the 1/4 chicken). Steve and Jessica ordered regular meals, but boy-oh-boy did our waiter get after Steve to order a larger meal because he was... the "guy" at our table. He let him know that he was going to still be HUNGRY after his small meal. Steve told him that he was a diet. (HAHAHA) We were ROLLING with laughter and our waiter thought he was a stand up comedian....little did he know, he was dropping ALL the right lines to a table full of stomachless people. We never did go into the fact that we are stomachless and the majority of stomachless people do NOT get hungry and can only eat so little. I think our waiter was surprised when he came back to see how much food was left over in the end.

We had, also, eaten at the Spaghetti Factory and when someone mentioned there were a few of us with who didn't have stomachs, our waitress said, "Ya...I sometimes feel that way, too." WHAT?! BAHAHAH....no, for real....like we don't have stomachs!!!

 

GOOD TIMES with GREAT PEOPLE!!!

 

Steve and myself on the left

Jessica, in the back, and Nicole, in the front, on the right

KNOWLEDGE IS POWER

I did an interview with Blair from the Bismarck Tribune a few weeks ago about my story.  She let me know that it was going to be in Sunday's paper in the Health Section.  While in LA, I got an email from Blair letting me know that it would actually be in Monday's paper.  Much to my surprise, it was on the FRONT page with a ginormous picture attached!!!  ALSO, EVERY OTHER NEWSPAPER in NORTH DAKOTA picked up my story and was, often, listed on their FIRST PAGE, too....the Fargo Forum, Grand Forks Herald, Dickinson Press, Jamestown Sun, etc.  Besides that, it was a TOP STORY and that means people were truly interested in reading about this!!!  Oh how my heart could just burst!

I am SO thankful that there was no other MAJOR news going on that MY story could be on THE FIRST PAGE and shared SO many times.  Knowledge is power and I'm so happy that this information about CDH1, gastric cancer, and total gastrectomies is out there!!!

http://bismarcktribune.com/news/local/bismarck/lincoln-woman-navigates-life-without-stomach/article_7711430f-95f3-5e88-b6b3-0b689db3e785.html



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LA- MY HEART IS INCREDIBLY FULL

Well, I made it to Los Angeles for the Spotlight on Gastric Cancer yesterday where my Aunt Kathy was able to pick me up. We got to spend some good quality time together with great conversation.

Once we got to the motel, I went down to meet with the crew that is here from No Stomach for Cancer (the Executive Director and 3 board members), along with the other speakers (Jessica and Nicole, the Stomachless Sisters and Steve Dang). It would be an understatement if I said my heart wasn't overflowing with love when I came back to my room!!! Every.single.one of these people are simply amazing and I cannot wait to get to spend more time with them this evening and all day tomorrow!

What an empowering and uplifting group of people....my heart is incredibly full!!! ❤

SO...HOW EXACTLY DOES THAT WORK?

I LOVE telling people about life without a stomach and I REALLY get a kick out of telling and explaining it to medical professionals!
I saw a medical doctor on Friday for something non-TG related. Our conversation went something like this, when going over my health history...
Doctor, "Why did you have a total gastrectomy?"
I explained how my mom and grandpa both passed from stomach cancer and I was being preventative given my odds of having an 83% chance of getting it with a ...4% chance of survival. Those weren't odds I was willing to go up against and this was the only thing that would GUARENTEE I would not get the same cancer that killed my mom and grandpa. It's similar to someone choosing to have a mastectomy due to a BRCA mutation.
Doctor, "So, how exactly does that work?"
HAHAHA....here it goes......and I gave the best, but shortest answer I could. I'm all about informing others, but it surprises when I have to tell a medical doctor "how it works."

CARSON WENTZ

If you are from North Dakota, you are most likely a Carson Wentz fan.  He is the Quarterback for the Philadelphia Eagles and comes from Bismarck, ND (where I currently live) and is a graduate of NDSU (in Fargo, ND- where I was raised).  I have NEVER heard one negative thing about this gentleman...he is a kind and caring soul.  I have never met him, but his dad, Doug Wentz, was our mortgage lender and was an amazing man...it's clear to see where he gets his kindness from.

I am, now, an even BIGGER fan of Carson Wentz.  What a kind person he is to grant this young boys wish through Make-a-Wish AND, without even knowing it, shed light on GASTRIC CANCER (which is the THIRD leading cause of cancer deaths).  If you haven't watched this video, please do so...in its entirety...and grab a box of tissues!!!  I'm a tough cookie, or so I like to think, and the end really got me good!

https://www.youtube.com/watch?v=Dxvc4JFQrNA

FALL 2017 SPOTLIGHT ON STOMACH CANCER

Cannot WAIT to this amazing conference AND to speak at it!!!

Also, I am THRILLED to be able to meet other stomachless friends and new ones who are on the journey of deciding what's right for them.  I hope you all will join me at this wonderful conference or at least tune in to watch the recording!!!

 

RESEARCH IS POWER

After being a part of the Inherited Breast and Ovarian Cancer research for the last year with Mayo Clinic, it looks like this is my last stack of papers they need from me. I sure hope the labs and information I provided over the last year bring some hope and answers!!!

RESEARCH IS POWER!!!!

SEAHORSE ORNAMENT

I don't have my Christmas tree up, yet, but I couldn't pass on this ornament!!!

 

 

(seahorses don't have stomachs, either)

PILL BOX

My little lady LOVES helping me fill my pill box....I fill it monthly (ran out of some tablets, so that's why we are re-filling it now) and each little section I fill for the day and not by morning, noon, evening, and night. So, it gets me through a whole months worth and is a life saver when it comes to keeping up on my vitamins!!

 Also, not one of those is a med, but rather vitamins. AND...no, I'm not taking the antacid/tums for heartburn (no heartburn without a stomach- yay!!) or an achy tummy, but rather for the high amount of calcium in them!!

LEAVE THEM ALONE, CDH1!

I am getting really excited for my presentation at City of Hope in LA.  I've been practicing like crazy and tweaking my speech where need. 

 

It never fails that when I get to this slide in my presentation, I get upset.  I don't care if this CDH1 mutation wants to mess with me....I GOT THIS, but when it messes with my family and so many of them, I start to get angry about it.  I'm thankful my wonderful family has options, like myself, but it's still frustrating none the less---LEAVE THEM ALONE, CDH1!

 

Spotlight on Gastric Cancer- LA

I AM TICKLED PERIWINKLE (see what I did there? ) TO ANNOUNCE THAT.....

I will be sharing my story in LA (Duarte, CA) at this WONDERFUL event- Spotlight on Stomach Cancer hosted by No Stomach for Cancer at City of Hope. I could not be more excited!!! On top of that, I get to meet some wonderful stomachless friends....IN PERSON....Steve Dang (here is Steve's blog https://dangsteve.com/) and the Stomachless Sisters, Nicole McDonald and Jessica Sasser (here is Nicole & Jessica's blog http://thestomachlesssisters.blogspot.com/). Yay!!! Cannot wait!!

ANGELINA JOLIE

 

STOMACH CANCER AWARENESS MONTH

Last year, I reached out to North Dakota Department of Health to see if the governor could/would declare November as Stomach Cancer Awareness month.  I was informed that we were too close to the deadline, but that it would be brought up this year, again, with the new governor.  I just received a disappointing email back...

"I wanted to reach out to you and let you know that I did not forget your request/suggestion for a stomach cancer awareness month proclamation. Unfortunately our new governor has set strict rules for proclamations for each section of the each state agency and the leadership team from the Department of Health determined that based on priorities and indicator measurements that we are responsible for, they submitted a proclamation for Suicide Awareness. I just wanted to be sure to follow up with you as I know this is something that was on your heart last year. Please let me know if you have any questions.

Janna Pastir

Program Director, Comprehensive Cancer Control

Division of Cancer Prevention and Control (DCPC)
North Dakota Department of Health "

 

It makes me VERY happy that they are lifting up the awareness of suicide as that is a VERY VERY important topic!!!  I'm just disappointed that it seems, as always, stomach cancer awareness, knowledge, and funding gets put on the back burner.  This is very near and dear to my heart, obviously.  I replied back to see if there is anything we can do, going forward.  I guess we will see.

TOO MUCH SUGAR

***that feeling you get when you have NO stomach and eat a layered rice crispy bar with caramel and marshmallows AND a piece of pumpkin bundt cake with frosting

*******TOO MUCH SUGAR********

 

 

ONE YEAR TOTAL GASTRECTOMY ANNIVERSARY

---ONE YEAR TG ANNIVERSARY---

 It has been ONE WHOLE YEAR since I had my WHOLE stomach removed to avoid getting the same kind of stomach cancer that killed my mom and grandpa. Given an 83% chance of getting this cancer with only a 4% chance of survival if I DID get it were odds I wasn’t willing to put myself up against (especially watching the torment my mom went through). It’s been a fast year (THANK GOODNESS for NO major complications) and I couldn’t be more thankful. I’ve learned a LOT in this last year!!!

 

The night before surgery, I bawled myself to sleep. I was terrified!!! Why on earth was I having my WHOLE stomach removed when it hadn’t done anything wrong (yet)? How was I going to LIVE without my stomach? What if I was NEVER able to play with Paige the way I used to? What if I have to be off work FOREVER because I can’t catch on to life without a stomach? I knew EXACTLY why I was having my whole stomach removed…so I could be around for Paige & Sean without those crazy odds, but at that given moment, I was scaring myself silly.

If I knew what I know now at that point, I wouldn’t have freaked myself out as much. I read a TON of people’s blogs and experiences. I was prepared for the worst (most people write when something is going wrong and not when it, necessarily, is going well). However, I tried to maintain positive throughout the whole experience…I mean, THIS is what I needed to do to ENSURE I would NEVER be killed by STOMACH CANCER.

This whole year has gone WAY better than expected. Some days have been more challenging than others, but I wouldn’t expect anything less considering I lived WITH my stomach even before I was out of the womb and it’s quite the adjustment. I feel really good and if I had to go back and do it again, I certainly would…hands down, no questions asked. AND I would, without a doubt, have Dr. Michael Kendrick do my surgery, again. I truly believe that choosing the right surgeon affects your recovery and how well you do. Dr. Kendrick is nothing short of amazing!

I had my one year check up with my doctor on Friday. My only concern is that I am tired ALL THE TIME!!!! My labs look great, so it’s definitely not that. My doctor is thinking that maybe my food intake isn’t quite right. She is going to look into me seeing a dietician. I expressed my concern with making sure it’s someone who is familiar with total gastrectomies and GETS the TG world. One frustration many TG patients have, when seeing a dietician, is that they treat us like gastric bypass patients (things are similar in a lot of ways, but SO different in many, too) or they just print off info from the No Stomach for Cancer website (which we all already have read the ins and outs of and know that wonderful info already). We will see what she can come up with and hopefully she can find someone to help me with the intake of GOOD food….high calories, high protein, LOW LOW LOW sugar! Also, we talked about how much weight I have lost (120lbs) and how I don’t really want to lose much more, but would love to get on the train of working out. I was advised to try doing more weight lifting and less cardio…and really just less cardio all around unless I can be sure to have more intake of food. That’s going to be hard, but I definitely am ready to get going on muscle toning and building!!! Overall, it was a good appointment and I was glad that everything turned out well!!!


So, here’s what I know 1-year post- total gastrectomy:

-You CAN live without your stomach. I have to eat every 2-3 hours and smaller amounts at a time. Also, I try not to drink a whole lot WHILE I eat so that I can absorb the nutrients.

- Food=Energy and I can definitely tell when I haven’t had a snack in the right amount of time. It’s like hitting a brick wall of lethargic-ness. I’m really good about eating every 2-3 hours during the week, but on the weekends, when things are a little more hectic, I sometimes will forget and there comes that wall. With NO stomach, I don’t get hungry and don’t get full…so, my body will give me other signs that let me know I’m due to eat.

-Without a stomach, I have to chew, chew, chew…and chew some more since I don’t have a stomach to break down the food I eat. HOWEVER, I definitely don’t have to chew AS MUCH as I expected.

-EACH PERSON IS DIFFERENT- I think that’s just a general rule of thumb, but it applies, without a doubt, in the TG world. What works for one TG patient may not work for the next.

-Lactose Intolerance- After a couple months, I started to become lactose intolerant and I HATED it! My whole life, I have grown up drinking milk with meals and having that as a staple. Instead of letting it take over, I started eating more yogurt, cheese, and small cups of milk at a time and incorporating it more and more into my diet. The more I did, the less intolerant I became. I seem to have NO problems with this now and can even eat a DQ ice cream cone with no issues!

- Gas- HOLY NASTYNESS!!!! Gas is WAY more stinky post-TG than before. Not that I can help it, but this is pay back to my hubby for all the times he’s bombed a room with his stink!

-Alcohol- it takes a LOT for me to feel the effects of alcohol & most of the time, I feel nothing. Not sure if this is a BAD or GOOD thing? Just glad I’m not a big drinker.

-Sugar is the ROOT OF ALL EVIL!!!! Too much sugar (I can usually push it to like 25g of sugar/meal or snack) makes me feel straight up AWFUL! I get extremely light headed, dizzy, and just “off.” The way you feel DRUNK off of alcohol is the way I feel when I’ve had too much sugar! And a sugar hangover is 20x worse than alcohol hangover (this has only happened ONCE since surgery and I sure hope I learned my lesson….FOREVER).

- Weight loss- It’s a no brainer that you will lose a lot of weight post- TG. I was told to expect to lose about 15%. Well, that average does NOT pertain to me. As of today, I have lost 120lbs. I would say I gained about 50lbs before surgery ON PURPOSE, but did not expect to lose 120lbs and be in a size I don’t even remember being in back in high school. Working in a dental office, we generally see our patients every 6 months. 6 months ago, people didn’t say too much, but within the last couple months, patients don’t recognize me and ask if I’m new here or they are shocked it’s me when they get in front of me to check out for the day. It’s quite humorous and always comes with my story because EVERYONE wants to know how you lost so much weight and how they can do the same. Although, it’s easier than I expected, I wouldn’t tell just anyone to go out and get a TG. Ha! I’ve even run into friends I haven’t seen in a long time at stores and they will just walk right past me until I stop them.

-Vitamins- These little guys are MY LIFE. Without vitamins, I would probably be close to nothing. I take a LOT of them and it’s a good thing. In the beginning, I was having my doctors nurse give me my B12 shots. When I took over, I wasn’t very good at giving myself my shots. Within the last 4 months, I’ve perfected it….THANK GOODNESS….and it’s a piece of cake! Flinstone Vitamins were DELICOUS as a kid….they are DISGUSTING now. When I take a Flinstone vitamin, I have to chew it along side one of my Tums (for calcium) in order to bare it. The rest of my vitamins are manageable, but the Flinstones might get kicked to the curb if I can find some other chewable multi-vitamin WITH iron that tastes better.

-Tylenol- It is HIGHLY suggested to not take NSAIDS after a TG as they can cause ulcers in the intestines. This is per my medical doctors at Mayo. I was HORRIFIED by this before surgery knowing that Tylenol didn’t work AT ALL before my TG, but for whatever reason since my TG, Tylenol works WONDERS!!! I don’t take it very often and usually wait until it’s bad enough that I can’t stand it, but when I do….my problem is solved.

-Bloating- I have never had a bloating problem before, but wow oh wow is that an issue now. If I eat too much I bloat IMMEDIATELY….literally look pregnant. I would venture to guess that I gain about 2 pant sizes when this happens. Why does food sometimes have to taste SO good and why can I not help myself?

-Something that works this time may not work next time. It’s all a guessing game. For example, I had a bowl of soup on Saturday and had NO issues. Now today, I had that same bowl of soup and roughly the same size and it sent me straight to the bathroom. This happens a lot with different food items. I had considered, in the beginning, keeping a journal of foods I eat and how they make me feel. However, after realizing that one day something works, the next it doesn’t, and the next it works, again, that I would be wasting my time. I will say that Papaya Digestive Enzymes have been a life saver, though. The Creon is SO expensive, even with my insurance, so I started taking these. They taste good AND on foods that usually cause my gut to HURT, they help so there is no pain. It’s like a yummy dessert for me since most sugary things and I are not friends.

- Snacks- Most girls carry a purse….I carry a purse AND a snack bag. I don’t go to many places without my snack bag. I never want anyone to feel like they have to feed me….let alone, feed me EVERY 2-3 hours. This has come in handy more times than I can count. Even just when running errands, it’s nice to have my snack bag with me because like I said before, food=energy and If I want to keep on keepin’ on, I need to snack….ALLL.DAYYY.LONG!

Last, but CERTAINLY not least………
-TG Community/Family- I am SO thankful for the total gastrectomy and the No Stomach for Cancer community. This little community is SO uplifting and helpful. It’s like a small family and each person is there for support, love, and to build each other up. If I had to PICK any community to be a part of, THIS would be the community and family for me.


So, it’s been one year without a stomach. It’s still crazy to hear and say that I have NO stomach, but because of how well I’ve adjusted to my new life and how great everything is going, I feel I couldn’t be more blessed. The CDH1 mutation can cause a lot of stress and can be an emotional roller coaster, but this quote couldn’t be more true…”When you wake up every day you have two choices. You can either be positive or negative; an optimist or a pessimist. I choose to be an optimist. It’s all a matter of perspective.” – Harvey Mackay
 I, myself, choose to be an optimist!!!

(picture from the No Stomach for Cancer website-
Titled "Stomachless" by Eleanor Davis)

IT'S THE LITTLE THINGS IN LIFE

It's the little things in life...I usually have to go to the pharmacy and pick up my B12 shot MONTHLY, but my refill for the next year allows me to pick up THREE months worth at a time!!!! This made my WHOLE day!!!!

ALWAYS

 

💗💗💗💗

MAYO- ROCHESTER, MN, USA

I am SO thankful for the care I received at Mayo, Rochester, MN.  I will say time and time, again, that I think they are THE BEST and this just shows it.  Their GI and surgery team are PHENOMENAL!!!!  I truthfully don't think I would be doing as well as I am today if it wasn't for their OUTSTANDING care!!!

 

"Mayo Clinic was No. 1 overall in the magazine’s annual Honor Roll ranking of its Best Hospitals list. Mayo Clinic also ranked No. 1 in six specialties:
•Diabetes and endoc...rinology
•Gastroenterology (GI) and GI surgery
•Geriatrics
•Gynecology
•Nephrology
•Neurology and neurosurgery"

http://newsnetwork.mayoclinic.org/discussion/mayo-clinic-ranked-top-hospital-nationwide-by-u-s-news-world-report/?mc_id=us&utm_source=facebook&utm_medium=sm&utm_content=post&utm_campaign=mayoclinic&geo=national&placementsite=enterprise&cauid=100502&linkId=40709782

FOOD CREEPING BACK UP MY TUBE

Sorry I haven't written in awhile!!!  We were staying at a campground with limited WiFi until our house was done being built.  We moved in last week and are finally starting to get settled, so hopefully I will be able to write a little more!!

A couple months ago, I was having the issue of being awoken during the night to what seemed like food sitting in my throat almost.  It wouldn't choke me or cause me to not breathe, but it was annoying and I couldn't go back to sleep until it settled.  I had read about trying to drink soda or try eating something acidic to get the pH levels to balance out.  These things were not helping.  I would have to sit STRAIGHT UP for at least 2 hours for that feeling to go away. 

I, finally, called my doctor down at Mayo.  She said that this is NOT uncommon for TG patients.  You don't have a the flap on your stomach that keeps your food in anymore, so essentially, the food is creeping back up my new tubing.  My doctor gave me a prescription for Carafate and Cholestyramine.  Carafate is a liquid you have to shake like crazy in the bottle and can take before bed or when awoken.  The Cholestyramine is a powder you add to water and drink before bed or when awoken.  Neither of these will totally get rid of that happening, but will help to avoid it.  She said to start with the Carafate and see if that helps.  If not, take the Cholestyramine.  She, also, suggested trying to eat 80-60-20 throughout the day.  So, the majority of my food would be in the morning, a little less through the afternoon, and even less at night.  She really pushed NO eating or drinking 2 hours before bed.  I will say that the way my day goes with eating, I probably do the opposite 20-60-80, but I have been REALLY watching my eating before bed and try to have my last snack 2 hours before going to bed.  This seems to have REALLY helped!!  Also, staying propped at night and making sure my head doesn't lay even with my gut helps.  I have only woken up 2 nights from this since given my new scripts.  The Carafate has done the trick (thank goodness) those two times and doesn't taste too bad at all.  The Cholestyramine LOOKS terrible, so I'm hoping I never have to take that!!!  HA!

SEROTONIN

SEROTONIN--
What is it??  Serotonin is "a chemical created by the human body that works as a neurotransmitter."
What does it do?? "Serotonin can affect mood and social behavior, appetite and digestion, sleep, memory and sexual desire and function."
Where does it come from?? 90-95% comes from the GUT

So, it was no surprise when I was talking to Sheila Buehler, my GI CPN down in Mayo, about how I'm doing and giving her information I have learned regarding Dr. Parry Guilford and his studies that this would be brought up.  She said they are currently doing research, but she strongly believes that with 90-95% of SEROTONIN coming from the gut that people who have had a total gastrectomy could be lacking this.  We were talking about patients who were feeling down and out or "just not right" after they had their TG.  She said that she had a patient who was "just off" after surgery for the longest time.  After thinking more on this serotonin bit, she decided to have her try taking depression/anxiety medication.  Depression/anxiety medication help with raising serotonin levels.  Sheila said that after a month of her patient taking these meds, it was a NIGHT and DAY difference.  She seemed to be back to her old, non-TG, self.  I am thankful that I have not had a change in my attitude, anxiety, etc., but I feel like this was GREAT information to have and it completely makes sense!  They do say that your gut acts as your 2nd brain (ie: butterflies in your stomach).  I don't think that having to take things such as depression/anxiety medication make you "crazy," at all....and in this case, it makes complete sense why TG patients may need it!!!

POSITIVE

 

Hearing you tested positive comes with multiple emotions...sad that you may pass this down to your babies, mad that you have to "deal with all that goes into this," happy that you have options and won't have to fight cancer if you choose to be proactive, frightened at what's to come, etc. There are a million emotions...

Those emotions have been had by or will be had by EVERY.SINGLE.PERSON in my family that has tested so far. That's 6 out of 6.

I am SO sorry that my aunt, 3 cousins, and my sister have to go through this and that they tested positive for the CDH1 mutation!!!! BUT...I am thankful we have each other while on this journey. It's not a piece of cake or a walk in the park, but it could be SO much worse! We are BLESSED that we have options to be preventative before these nasty cancers can attack!

Please send extra thoughts and prayers for peace of mind to my wonderful family members dealing with this...and, also, to my cousin ,Eileen, as she meets with our team at Mayo today for her first endoscopy and appointments!!!

I'M A PREVIVOR

As much respect that I have for survivors and those who have fought cancer, I am SO thankful I can call myself a previvor!!! I am BLESSED that I NEVER had to and NEVER will have to fight stomach cancer the way my mom and grandpa had to. #blessedbeyondbelief

YOU GOTTA DO WHAT YOU GOTTA DO

Excuse the foul language, but this is how I feel about the CDH1 mutation and having a total gastrectomy....sometimes you gotta do what you gotta do!!!
I wasn't about to wait for stomach cancer to fight me....I took care of that jerk myself!!!! So, take that, HDGC (hereditary diffuse gastric cancer)!!!!!

DR. PARRY GUILFORD

 

This man right here is the man, the myth, the legend....he is nothing short of amazing and someone I really look up to.

Meet Dr. Parry Guilford. He is the Director and Principal Investigator of the Centre for Translational Cancer Research in New Zealand. HE is the man who discovered the CDH1 mutation and continues to research it.

I have been in contact with him through email and he is kind, caring, and quick to reply back with any questions I have had.

He just received a 5 year Grant from the New Zealand Health Research Council to continue strong research on the CDH1 mutation and HDGC. He is EXTREMELY confident that by the time Paige is able to decide if she wants to test for the mutation (she has a 50% chance of the mutation), that she will NOT have to have a total gastrectomy. He has spoken, before, about Chemoprevention Approaches...specifically one where 1 week every 5 years, these kiddos (grown at this point) would take a low toxicity chemoprevention medication to avoid HDGC. They are "making great progress identifying weaknesses in the cells with CDH1 mutations and there are a few drugs which are looking promising (at least in cell culture experiments)." It's unlikely that they will have something set in stone within the next 5-10ish years, but "hopefully we will have started trials by then." "It will take quite a long time before we are confident that the chemoprevention drugs are working."

Hearing all of this great news from Dr. Parry Guilford makes me SO happy...my whole day, week, month, and year were MADE hearing that Paige and any of her cousins IF their parents test positive will NOT have to have a TG and there will be other options!! :) :) :)

Like I said, Dr. Parry Guilford is nothing short of amazing and I appreciate ALL he has done for myself, my family, and other CDH1 families. I don't think he realizes how great he truly is, but I have tried to let him know exactly how I feel!!! <3 

BAD DAY

I can count on one hand the number of times I have had a "bad" day since my total gastrectomy almost 10 months ago and I'm VERY thankful for that.

Last night gets added to this total. I have had a few times in the last month or so where I go to bed and it feels like what I've eaten has crawled back up my new tubing and is sitting in my throat. I usually get up, walk around for a bit, and go back to bed and prop myself up a little more and I'm good. I have been reading on... other support groups that this is not uncommon for TG patients. They often make sure they are propped up good for bed, will have something acidic before bed (like pop, OJ, or a more acidic fruit), or if this wakes them up they will drink/eat one of those things and then they are good. For whatever reason, the pH difference with what's in our tubing with something acidic seems to combat each other.

Well, last night I was awoken about 1am with this feeling of food or a whole bunch of phlegm in my throat. I tried walking around for a bit and making sure my pillows were really propped up. Nope, that didn't help. I got up a bit later and had a few drinks of some soda pop and laid back down. Nope, still didn't help. A little while later, I got back up and had an orange and laid back down. Still, no help. It doesn't feel like it's choking me or causing my airway to be blocked, but it's very uncomfortable and I cannot sleep with it just sitting in my throat. I couldn't get myself to throw it up, either. At 5am, I was sick of it and was beyond exhausted and frustrated! I sat upright and laid my head against the wall to sleep. THAT was the ONLY thing that helped. However, I woke up with the biggest headache! I'm not sure why this time was worse than others or why I couldn't "fix" it myself, but I sure hope this doesn't happen, again! Annoying is an understatement and I don't think I got even close to proper sleep, so I have felt icky all day so far. I plan to take a nap shortly and hope I can get some good and much needed sleep to help me function better today!

TACO IN A BAG?

Taco in a Bag anyone?
Ok, maybe not quite the "Taco in a Bag" you were thinking of, but here's what happens when I can't finish my lunch...I knew I should have ordered the Kids Meal, but no....didn't want the hassle and my eyes may have been just a bit bigger than my non-stomach!!!

BATTLE

So true....I just feel blessed that I had/have options to fight the battle!!!!

 

POOP STINKS

SO, I agreed to being an open book regarding my journey and not leaving anything out. So, here it goes....

 POOP stinks, but it REALLLLLY stinks post-TG. The other night, in the middle of the night, I had to go. I usually turn the fan on, but it's really loud since we are living in our camper until our house is built. So, since it was middle of the night, I left it off. Well, I finished and crawled back into bed. No joke, not even 5 minutes after, the alarm which is right next to the bathroom for gas leaks like methane, propane, and carbon monoxide went off!!!! It scared me SO bad...and do you think my hubby will give it up? Nope!!! He finds this HILARIOUS!!!!!!

POSITIVE

"Your results came back and they are positive for the CDH-1 mutation."

 That's a scary and uncertain thing to hear. Unfortunately, my cousin, Stacie, had to hear those words. Now, though, she's under a tight microscope with means of being more aware of her body. She will start the whole screening process that goes with this CDH-1 mutation. She plans to see the same doctors my Aunt Vera and I did down at Mayo Clinic in Rochester, MN. I feel so good about her being in some of the best hands ever there.  I look forward to her meeting these amazing doctors at Mayo...just wish it wasn't for this reason. Please send up extra thoughts and prayers while she goes on this crazy journey and decides what's right for her!!!

COURTNEY (my sissy)

GOOD LUCK to my awesome, brave, courageous, and amazing sister from last week (I forgot to post as life was CRAZY busy last week)!!! May 30th was her day...the day she chose to be tested for the CDH-1 mutation. Please send up an extra thought or prayer for her. The first appointment can be a bit overwhelming with all the information you gain, but is well worth it! You, Courtney, are a brave soul. I am SO glad you decided to be tested and are running at this head strong. I'm glad you are doing this not only for yourself, but Miss Harper and Jordan, too!! Good luck...hoping and praying for a NEGATIVE test result, but (as always) if not, the best part is YOU HAVE OPTIONS!!!!! Love you!!!!

ERIN

GOOD LUCK TOMORROW to my cousin, Erin!!! This girl is nothing short of amazing. She's an upcoming sophomore at NDSU and I'm sure her mind is on sooo many other things (I know my mind was in college), but she is being proactive, even when a little scared and unsure, and getting tested for the CDH-1 mutation. I know a lot has gone on in your mind and tons of thoughts are floating around, but you are a strong and determined girl. No matter how your results come back, you got this! Asking for extra thoughts and prayers for her!!! Hoping for a NEGATIVE test result, but if positive....you've got options!!!

MRI DAY

Besides having an 83% chance of hereditary diffuse gastric cancer with this CDH-1 mutation, it also gives me a 42% chance of lobular breast cancer. I haven't decided if I'll go ahead with a prophylactic double mastectomy or not, yet. So, in the mean time, I do mammograms and breast MRI's every 6 months (alternating) as a preventative measure.

This morning at 7am, I'll have my 2nd MRI. Unlike other MRI's, this one you lay face down with your breasts hanging into a box and feet go in the tube first. It's stressful to try and not move for 45 minutes as even the slightest deeper sigh will make you add on an extra few minutes to your scan since breasts move with the slightest of movement just hanging there inside a box. And, of course, when they tell you to just relax and not think about it, you do the opposite!! I'm a little nervous this go around just because some of my incisions from my total gastrectomy are still tender and I'm not sure how laying abdomen down on a hard box is going to feel. I guess we will see....;)

GOOD LUCK, EILEEN

Good luck to my cousin, Eileen, as she does her genetic testing for the CDH-1 mutation TODAY. If you have extra thoughts or prayers you could send her way, I would greatly appreciate it!!

 Eileen, you are everything the picture attached to this says....not just today, but always!! With a 50% chance of testing positive for the mutation, I'm glad you chose to test.....for yourself, your hubby, and ESPECIALLY your kiddos!!! I hope and pray you get a negative result, but if you don't...you've got options!!!! Love you!!!

QUOTED YOUR ONLINE ADVOCACY WORK

If you haven't already been able to tell from my previous posts, I ADORE and LOVE everyone down at Mayo Clinic.  Sheila Buehler, who is my go to in the GI department has been nothing short of amazing.  She's so knowledgeable and straight forward.  She doesn't sugar coat anything, but is always so kind about it.  Then, of course, there's Dr. Michael Kendrick who did my surgery.  He, also, is one of the most amazing people I have ever met along with being the best surgeon EVER (in my opinion).
Anyway, where this post is leading to is that I had to send a message to Sheila yesterday as I had a quick question for her.  Sheila replied back and at the end she said, "BTW, several of my patients have quoted your online advocacy work- way to go."  THIS makes me SO happy!!!  This is why I stay up to date on my blog...for my own journaling purposes, to keep family/friends up to date, and to educate and help others the way I feel reading others' blogs helped me!  I love this!! :)

HAPPY MOTHER'S DAY!!!

Happy Mother's Day to my beautiful Mom in heaven. She taught me so much and I am who I am today because of her. I miss her dearly and what I wouldn't give for even just one interaction between her and Paige, but I know she watches over us daily and for that, I am thankful. I will forever love her, miss her, and cherish all of the fond memories I have of her. 
Because of her and her fight, I was able to find out about this mutation and conquer it head on before it even had time to think about attacking my body.  As much as I wish she didn't have to go through that, I am THANKFUL for her fight, strength, and determination....I am who I am because of HER and I did what I HAD to do because of HER. <3

COLOR SPLASH FUN DASH 5k

9 months since my total gastrectomy is coming up on Tuesday. I can HONESTLY say that I did NOT think I would be doing a 5k so soon.

Before surgery, I made a list of super fun things to do with Miss Paige as I wasn't sure when I would be feeling up to doing a lot with her. I thought I would still be recovering, be very tired with zero energy, and still figuring out my new normal (they say average time until you figure out the new you is one year).

I am happy and thankful that I have jumped into a lot of physical activity sooner than expected!!!! A few weeks ago, I was jumping on Paige's trampoline with her and my niece and my sister said she couldn't believe how much energy I have. Last weekend, Sean and I went for a nice long bicycle ride and it felt SO good. Then, yesterday, with the support of some of my amazing friends, we walked, but conquered the Color Splash Fun Dash 5k!!! I could not be happier with how things are going with my "new normal," energy level (since I seem to have figured out my snack routine and what my body needs to function), and I just hope it continues!!!

AND looking at the pictures below, Paige LOVED the beginning part of the race, but how did she feel at the end when she was overly hot and tired??
 "It was too long, too hot, too messy, and everyone looked like a booger when their colors mixed." Paige Huus, Age 5
HAHA....well, the rest of us had fun!!! and mind you, the majority of the time, she road in the wagon or on my shoulders!!!!!