Thursday, December 20, 2018


Have you ever listened to someone else tell YOUR story?  Well, this just happened to me as a friend was telling a new friend about my story.  It was a punch to the gut and made me swallow hard when I heard my story come out of the mouth of someone else.

One thing that really took my breath away was when they said, “Essentially, she was born to die.”  They went on to elaborate that everyone is born to die, but I am on that spectrum much higher than most.  They asked my other friend how they would feel to have to wake up daily wondering what was looming for them and if today was going to be the day.  I certainly don’t have that mentality, but I can see how someone would think that.  I can’t stop thinking about the whole, “she was born to die” phrase and how deep that is.  Thank goodness I had the option to be preventative and hopefully can fight that dying thing off a little longer…..I still have a lot I would like to do in my life!

Thursday, November 15, 2018


NOVEMBER is Stomach Cancer Awareness Month

Saturday, November 3, 2018



LOVE that genetic testing is becoming a norm...
Also, CDH1 is something my hometown Clinic is including in the testing and my doc said 
it’s become very affordable as of recent!!! 



My kiddos at school sure keep me on my toes. One of my 6th graders asked if I could still have kids without a stomach. I explained that I can, but it’s a bit harder as I’m trying to get as many nutrients as I can, let alone trying to give a baby nutrients. He said, “No, I don’t think you get it. Like you don’t have a stomach and a baby grows in your STOMACH!” 🤦🏼‍♀️ I informed him that he would need to discuss this with his parents. 😂😂😂




My stomachless family in the first picture and my mutant family in the 2nd (two still working on scheduling for TGs, one day). Hate that we are on this journey, but wouldn’t want to be on it with anyone else.
Dr. Michael Kendrick at Mayo Clinic has been/will be all of our surgeon. 💜
Cousin Stacie, myself, Cousin Eileen, Aunt Vera
Sister Courtney, Cousin Stacie, myself, Cousin Eileen, Aunt Vera, Cousin Erin


Borrowed this from my friend, Chris Martin, who has been on this same journey with me.  
She NAILED it!


THANK YOU, Aaron Rosenberg, for getting this information out there...


I was meeting with my 6th-8th graders the first week of school (there are 4 in total) and we did the game where you write down two truths and one lie about yourself and they have to guess the lie.

These are what I wrote down and it’s clear what they thought was my lie. IN FACT, I heard, “Geez, Mrs. couldn’t have made this any easier!” “It’s pretty obvious people can’t live without their stomachs.” “You would be DEAD if you didn’t have a stomach!”

Well, guess who got a nice lesson on living the non-stomach life today?? Haha They were enthralled and had about a million questions!!!!

(PS- the lie?? My middle name is NOT Dakota, but is Dacotah 😉)


The FIVE BEST things about NOT having a Stomach....this video is great!

Friday, August 10, 2018


Why endoscopies are NOT always the answer to being preventative...

My cousin, Eileen at 30 years old, had her endoscopy on a Monday. Everything looked great and they didn’t suspect anything. Total Gastrectomy completed the very next day and our surgeon said nothing alarmed him and he didn’t expect anything to come back from pathology. Pathology comes back...NOT just cancer cells, but she was diagnosed with STAGE 1 STOMACH CANCER!!! Time frame given...within 2 years, they expect she would probably not be here if it wasn’t caught early (and she had ZERO signs/symptoms). THIS is why, with family history and the CDH1 mutation, having a TG should not be put on the back burner and very highly considered!!!! 


“If you are not getting the answers you need, trust your persistent!”


Please take the time to read a brief story about my stomachless friend, Jessica Solt, and her journey with losing her stomach.

Wednesday, July 18, 2018


Lobular breast cancer and the CDH1 mutation......still not sure WHAT to do. Hear me out....and I'm open to thoughts and/or opinions....

With this crazy mutation I have, it increases my risk of lobular breast cancer by about 50%. My breast surgeon said that there are two main types of breast cancer- ductile breast cancer and lobular breast cancer. He said of the two, he would NEVER want lobular as it's fast moving/aggressive and hard to find (similar to hereditary diffuse gastric cancer). Unlike the stomach, if I choose to have a prophylactic double mastectomy, there is still a small chance of breast cancer. (With a total gastrectomy, you have a 0% chance of stomach cancer after the surgery.) For most patients who have a mastectomy, their risk changes to about 1-2%. Since the mutation doesn't go away with a mastectomy, my odds would be a little higher- about 3-9% chance even after surgery. Also, they suggest that if you have a double mastectomy, you do non-nipple sparing surgery. Keeping those nipples increases your risk even more and often times, they die off after surgery and/or have no feeling and are numb anyway. WITH that 3-9% risk, if you DO get lobular breast cancer, it's often times too late and has already attached itself to another organ or place in the body. He did say that it is much easier to detect breast cancer when you keep your breasts than with little to no breast tissue left after a double mastectomy. My surgeon, also, said that in his 11 years of doing these surgeries (and he does anywhere from 80-100/year), he has NEVER done a prophylactic double mastectomy and had a patient end up getting cancer and of the ones who have had a mastectomy due to cancer, less than a handful have had a re-occurrence of breast cancer. If I choose to go the route of a double mastectomy, I wouldn't have to ever do another MRI or mammogram, again- also, no more paying my deductible and coinsurance every year for those scans. A mammogram detects lobular breast cancer about 75-80% of the time and an MRI detects it 90-95% of the time.

I have NOT met with a plastic surgeon, yet, but plan to go and get their thoughts, opinions, and options.

What I can say is that I thought meeting with the breast surgeon would give me this big ah-ha moment and much more clarity. It did the complete opposite!!! I may have to, literally, write down my list of pros and cons!!! This may wait until AFTER I see the plastic surgeon, though, as I think that will alter my thoughts quite a bit, too! Ugh

Monday, June 11, 2018

4 OUT OF 6

Requesting some big thoughts, prayers, good juju, or whatever you got for my cousin, Eileen Stewart!! She will be having her total gastrectomy tomorrow morning by the amazing Dr. Michael Kendrick at St. Mary’s Hospital/Mayo Clinic in Rochester, MN. I know she is in the best hands not only because he is rated the #1 laparoscopic surgeon in the world, but because of how well myself, my aunt, and another cousin are doing since our stomach removals!! She will be #4 out of 6 who have tested positive to have a total gastrectomy in our family.

Eileen has been nothing but positive throughout this whole journey and that will definitely be on her side throughout the recovery!! When I asked how she’s feeling, she just says she’s ready to get this over with. She’s a kind soul with the fight and bravery of a soldier and I know she will do well!!! Love you, girl, and keep that positive attitude flying high...always remember your why. 💜💜💜

Friday, June 8, 2018

Tuesday, May 8, 2018


With Mother’s Day coming up, my heart breaks every year and probably more so since Paige has been a part of my world. I would have loved to see the relationship my mom and Paige would have had!!! Also, it pulls a little more at my heart strings seeing all these grandparents (specifically Grandmas) at their granddaughters soccer games and Paige doesn’t have that. What I wouldn’t give!!! I’m glad she doesn’t see it as that and just enjoys the game! Although this journey hasn’t been a breeze, I’m so thankful I was given this opportunity to be preventative so that one day, when Paige has kiddos, I will be on that side line cheering her kids on!


To MY family and to family of my CDH1 friends, YOU are not exempt. Stan Walker said this in an interview with Australia's TODAY show and hearing that felt like a punch to the gut and is SO true. It doesn't matter WHAT you do or if you stay as healthy as possible, YOU are NOT exempt!!!

Monday, May 7, 2018


Meeting a new soccer mom at Paige’s soccer game and Paige tells her, “My mom had surgery and now she poops a lot.”

Thanks Paige!!!!


I had the privilege of sharing my stomachless story with this one of my college friends 9th grade class! It went very well. Mrs. Albrecht has a great group of students who were very much paying attention and asked some killer questions at the end!!!!
Thank you for asking me to speak to your class, Alyssa!!!! It was a great time and I’m so glad I was able to share my story and spend time with you and your family after!!!! 💜💜




Friday, April 27, 2018


I don’t complain very often about anything related to my total gastrectomy as I truly do feel blessed that I was given this option TO BE preventative...something my mom and grandpa didn’t get. HOWEVER, this being woken up in the middle of the night feeling like I’m choking from acid is really starting to piss me off! It’s been happening more and more lately. I’m propped with 3 pillows, try not to eat too close to bedtime, and even will take Carafate before bed if I feel like I did eat too close to laying down. Yet, that acid shoots up my esophagus out of nowhere and I wake up choking. I cough for quite awhile and even do a lot of spitting hoping it will help. Then, my throat burns and I can taste acid (my poor teeth!). Ugh....

 Don’t get me wrong, the alternative would have been much worse, so still feeling thankful, BUT...this is annoying!!!!!!

Tuesday, April 10, 2018


I have been feeling SO extremely tired & lethargic lately.  9pm rolls around and I am beyond beat and ready for bed.  After seeing a post about iron supplements and how too much can be bad for you, I decided to try and stop taking my 65mg of iron/day. Well, needless to say....Friday I was trying to figure out why I've been so lethargic and tired lately and what I've changed in my life. DUH!!! This! So, I started back on the iron train and guess what?!  In TWO days, I already started feeling 100000x better!

*side note and, also, sure does help my stool to be much more "stool" like, too

Saturday, March 10, 2018



One thing I hear from a GOOD majority of my TG friends is the fact that after surgery (not right after, but months down the road) is that they are ALWAYS cold. Sometimes it's a vitamin deficiency and usually iron, but other times it's just the mass amount of weight-loss. My iron has been good since day one and although I DO take 65mg of this a day (to help my stools be less loose), my being always cold comes from the weight-loss (135lb to be exact and HOPEFULLY no more!---the struggle is real). This winter has been BRUTAL for in North Dakota doesn't help.

Friday, January 12, 2018


So, what do you do when you don't have a stomach and you don't get hungry or full?? You portion out your sizes so THIS doesn't happen!!!!
The smile on my face doesn't show the misery and awful pain I had in my gut from TOO.MUCH.FOOD! I was so relieved once that feeling passed and my system was "emptied out" if you know what I mean....
 BEFORE- TOO MUCH FOOD---so much pain!
AFTER- I was so relieved once that feeling passed and my system was "emptied out" if you know what I mean

Monday, January 8, 2018

B.S. and A.S.

We all have those defining moments in our lives.  Having this total gastrectomy surgery is one BIG defining moment for me.  I find myself referring to situations as BEFORE SURGERY (B.S.) and AFTER SURGERY (A.S.).  Even things that have NOTHING to do with surgery get these descriptions.  I was talking with a girlfriend about a face wash I used to use and even in that moment, I told her, "I used to use that face wash before surgery."  Why does THAT matter...why couldn't I just have said about 2 years ago?  Because THIS surgery was defining for me and there will always be my life BEFORE surgery and AFTER surgery.  It might drive people crazy (it even drives ME crazy sometimes), but this moment will always be a HUGE defining moment in my life.