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!!!!!

 

"YOU'RE EATING, AGAIN?"

"You're eating, AGAIN?" was the question that came out of a gentleman's mouth at an event I attended recently.  Yep, I sure am! 

Most days, I feel like all I do is eat...I seem to always be munching or snacking, but that's ok!  It gives me energy and keeps me going.  So, when he asked, "You're eating, AGAIN?" he didn't mean it in a mean way, but he's right...since I had arrived, I pretty much had been eating that whole time.  I started with one taco.  About a half hour later, I had some chips and salsa.  About a half hour later, a small piece of banana cake.  About an hour later, a small piece of DQ ice cream cake.  It was when I was dishing up the DQ cake he asked.  He left shortly thereafter, but I had popcorn about an hour after the DQ cake and then my vitamins and I was good for the night.  

A day in the life of Heather's eating consists of the following:
Vitamins right away when I wake up (that's enough of a meal in and of itself)
1-3 hours later- cup of yogurt (if I'm feeling risky, I might stop and get an egg sausage and cheese biscuit)
1-2 hours later- popcorn, cheez-its, fruit cup, peanut butter toast, peanut butter crackers, etc.
1-2 hours later- lunch (left overs, sandwich, go out for lunch, whatever I decide that day)
1-2 hours later- fruit snacks, fruit cup, or just something sweet (but less than 20g of sugar!)
2-3 hours later- supper (whatever Sean and Paige decide usually)
1-2 hours later- vitamins
1-2 hours later- fruit cup, applesauce, fruit, cheez-its, chips, yogurt, fruit snack, etc.
I never wake up during the middle of the night to eat, but when it's time to wake up, my day starts like this, again, and I can definitely tell I'm ready to eat although I don't have the feeling of being "hungry."  Eat, eat, eat...that's the motto of my life post-TG!

GROUND ROUND

This stomach free lady is a TICKED OFF stomach free lady!!!

A few weeks ago, we went out to eat at the Ground Round. I asked the waitress if I could order off the Kids Menu due to my medical condition (I do this just about everywhere we go and have literally NEVER been told NO....not even at the TWO buffets we've eaten at and one was a STEAK buffet). The waitress said she's never been asked that and would have to ask a manager. The manager came back and said that was fine to do so, but I would have to pay a $2 upcharge since I'm not under 10 years old. I agreed to it, but thought that was odd. Whatever...maybe they'll give a little extra food since they charge more? Well, I got my food which included 5 steak bites and a scoop of mashed potatoes. CLEARLY, wasn't given anything extra. I texted some of my girlfriends to see if I was in the wrong for being upset and over thinking it. They helped me to realize that I had every right to be upset.

I waited two weeks to see if I could just let it go, but nope....still upset, so I emailed the company and got a response back saying the current restaurant manager would give me a call.

The General Manager of Ground Round- Bismarck, ND called me back today. She told me that she apologized for the inconvenience and that I felt the way I did. Their policy is to always allow people to eat off the kids menu, but medical condition or not, they have to charge $2 more. She said they lower their prices on Kids Meals so that ALL families (except for medical conditioned people) feel they can go out to eat and have it be affordable. (I didn't feel like their Kids Meal items were any less expensive than anywhere else?). She said she would like to offer me some free coupons, but that going forward I would still be charged the $2 upcharge. I told her that I didn't want anything for free or any coupons as we will not be back there. However, what I WOULD like her to do is to look at getting that policy changed. Either charge the extra $2, but give a bit more food OR change it so that IF you have a medical condition (and medical card to prove it), that you can order off the Kids Menu NO PROBLEM without an upcharge! She said she would look into it...although, she didn't sound very excited about that.

As if it's not already an irritation to have to order off the Kids Menu as I would LOVE to have a whole steak OR not have to explain myself, it stinks that there would be upcharges like this in place at a restaurant. AND if the waitress had never been asked that before, clearly it doesn't happen daily. Why not let a person WITHOUT a stomach or any other medical condition ,even if they have to show their medical card, order off the Kids Menu no problem? Nope, instead they would rather lose a customer.  Sad and VERY irritating!!!