Monday, November 28, 2016


We had our family photos taken about a month ago and our photographer was able to capture this picture which I LOVE!!!!
No Stomach for Cancer Bracelet
"She believed she could, so she did" Bracelet
Arrow Bracelet (God knows I've been pulled in multiple directions on this journey)
and Seahorse Bracelet (as they, too, do not have stomachs!)
ALL of these bracelets tell a story about this journey I've been on and I LOVE IT!


I came....and I conquered my first Thanksgiving without my stomach!!!

I even had one more small helping of green bean casserole, a half of a dinner roll, and a small scoop of banana dessert. WAY more than I should have and paid for it a little bit, but totally worth it!  Most people gain weight during Thanksgiving, but I lost 2 more pounds. HA!

Happy (late) Thanksgiving to all!!!! I have more to be thankful for this year than ever before!

Wednesday, November 16, 2016


It has been THREE months TODAY since I had my total gastrectomy (complete removal of my entire stomach). It sure doesn't feel like three months....feels closer to 6 or 8 months and that's a good thing! I feel like I have recovered so well and so quick, it's amazing. Talking with my doctors at Mayo, they say I'm an A+ student. I can't take all the credit, though! Without my incredible team of doctors at Mayo and my primary doctor here, I don't think I'd be doing this well! Plus, having the HUGE amount of support I do, keeps me going!!!

I read SO many stories of people who have such a hard time after surgery...they get strictures and have to go back in and have their tube blown up with a balloon, people who are constantly getting food stuck, people who are constantly getting sick (whether vomiting or diarrhea), people who don't sleep well at night because of reflux, people who had to be off from work for 6 months (not weeks), people who need a j-tube (similar to a feeding tube), etc. I just sit back and think, "WOW...I am so lucky and so blessed for SO many reasons!"

The one thing that isn't weighing me down is the one and only complication I have had....fat malabsorption. It doesn't bother me, we are testing for it the 2nd week of December, and there's a quick easy fix.

Also, as weird as it may sound...I'm so thankful I gained extra-extra weight before surgery! I have lost 55lbs and had I not gained the extra-extra weight, I fear a j-tube would have been in my future and I am not one to be held back by a j-tube/feeding tube!

All in all, I feel SO good...mentally, emotionally, and physically (for the most part...that will come even more with time) and every day I wake up thinking about how blessed I am! Blessed to have the option to be preventative, blessed to wake up another day, blessed to have all the people I do in my life. I am one lucky lady!!!

Tuesday, November 15, 2016


Along with this CDH-1 mutation giving me an 83% chance of diffuse gastric cancer, it also gives me a 42% chance of lobular breast cancer.  (the same cancer my maternal grandmother had)
I had my mammogram and ultrasound yesterday afternoon.  All turned out well.  The lymph node that was enlarged at my MRI and we biopsied that came back as nothing is STILL enlarged, but doesn’t seem like it has grown at all.  We are just going to keep our eye on it since it hasn’t really changed.  I go back in May for my next MRI.
Just like with the stomach, I do have the option to do a prophylactic double mastectomy.  I’m just not sure I want to or am ready to go down that road.  I have a TON more research to do before I even decide.  If I choose to NOT do that, I always have the option of monitoring with the mammogram and MRI every 6 months.   I feel like every time I’m in the doctors office and this gets brought up, I become emotional.  I know mind wise, I am definitely not ready for this.  Maybe in time I will be just like I was with my stomach.  We will see!  I did get a ton of my questions answered which surely helped.
I asked about a preventative hormone blocking mediation which can reduce the risk of breast cancer.  My doctor said that there is something I could take to do this.  HOWEVER, because it is a hormone blocker, it would send me into menopause.  She wasn’t sure that at age 31, she wanted me to go that route just yet.  If I didn’t mind that piece of it, she said we could.  Nah…I think I’m good.
With stomach cancer, if I waited until/if I got it, I only had a 4% chance of survival.  So, I asked if I waited until/if I got breast cancer, what would my chance of survival be.  I didn’t get a definitive percentage, but was told that since I am being screened every 6 months, if they found something, they could act quickly and usually it would still be in the early stages just because of how often I would be in for screenings.  My doctor, also, stated that even if I have a double mastectomy, it doesn’t completely change my fate.  I would still have a 4% chance of breast cancer WITH the mastectomy if I ditched my nipples and a 5% chance if I did nipple sparing surgery.  So, it goes from 42% down to 5%ish…is that enough for me to do it when I can do screenings every 6 months?  That’s the question I need to think on.
Just like with our family’s type of stomach cancer, lobular breast cancer has signet ring cells.  So, I asked if I would be able to feel a lump or anything IF I ended up getting it since in the stomach it doesn’t form a mass.  She said unlike other breast cancer, this one forms linear and not necessarily mass like.  However, she said I would still be able to feel a lump.  At least I can be on top of it that way!
Last question I had was in regards to being seen by a breast doctor here in Bismarck or Mayo.  She said either would be fine and up to me.  If I decided to have nipple sparing surgery, she would for sure send me to Mayo as they are better at that kind of stuff there.  If not, I could surely do it here.  Knowing the experience I have had at Mayo and the AMAZING doctors that are down there, it’s a no brainer I’d go there.  I’m just not 100% sure WHAT I want to do.  I still have another 3 months before I can do any kind of surgery, anyway, due to me having to be 6 months post total gastrectomy before any other surgery can occur.  I doubt in the next 3 months I’ll have decided even, BUT…at least I got some REALLY good information yesterday for me to ponder!

Saturday, November 12, 2016


So, I decided to binge and read Mr. Robert Yale's entire blog in one night. This would be the gentleman the Kidd Kraddick Morning Show granted the Christmas wish for the other day. Reading his blog made me incredibly sad, yet SO thankful given the options I had and chose. Here are some quotes from his blog that really moved me!!!

"Long-term dreams of seeing your young children grow up, of cherishing your beautiful wife into old age, of nurturing decades-old friendships, of achieving professional success and advancement, all of those evaporate. Instead, your priorities and dreams and goals become very near-term: what can I do today to show my children how much I love them? What can I do today to love my wife well? How can I reach out to a friend and encourage them today? What can I teach my students about life through this experience?"

"It has been tough to face the reality that the rest of my life will likely consist of chemo treatment after chemo treatment until the available treatments run out or stop working and the cancer kills me."

"We are not responsible for the length of our life, only its depth."


I got a LARGE box from Mayo on Thursday. My hubby asked if it was my stack of bills from Nope, just my kit for testing for fat malabsorption!!! I guess I didn't expect THAT big of a box...DANG!


I was listening to the Kidd Kraddick Morning Show earlier this week and they were granting Christmas wishes. The gentleman they had on was 35 years old and diagnosed with Stage 4 gastric cancer earlier this year. It broke my heart and brought tears to my eyes listening to him talk. He said he's in stage 4 so there's no surgery he can do and it's incurable. The only thing he can do to prolong his life is to always be on chemo. He will try one and when it stops working, switch... to another. When that stops working, switch to another and so on and so forth. NOTHING will ever cure him of this awful cancer. The morning show asked how his kids (4 and 2) and wife were handling it and he lost it. I couldn't help, but to cry along with him. The likelihood that he will last a year is VERY unlikely as stomach cancer is so aggressive (less than a 4% chance of survival if you get it). I feel so awful for this gentleman. At the same time, listening to him made me SO thankful for everything I have learned and that I was able to have the surgery I did so I will NEVER be in his shoes in regards to stomach cancer and I hope by being preventative, I will be around for a LONG time to watch Miss P grow, learn, and become an amazing young lady!!! My thoughts and prayers go out to him and his family during this extremely hard time!!!!

Monday, November 7, 2016


***That moment when you go to the pharmacy to refill your Ursodiol so your gallbladder stays in check and doesn't freak out causing another surgery and you expect to pay OVER $100, again, and they say, "NO COPAY."***

***DAY MADE***

Sunday, November 6, 2016


Along with the CDH-1 mutation giving patients an 83% chance of HDGC (hereditary diffuse gastric cancer), it also gives patients a 42% chance of lobular breast cancer.  For now, I have decided to do the screenings for this which include mammograms 1/yr and an MRI 1/yr with 6 months in between the two.  I have my next mammogram scheduled pretty quick here and will get a full break down of everything related to lobular breast cancer, again, since my mind was very much on the stomach piece of this when I had my first mammogram about a year ago.

Of course, as you guys know, I am ALL about more research!!!  I just got a letter from Mayo Clinic asking if I would participate in a research study called, "The Inherited Breast and Ovarian Cancer Study" due to my CDH-1 mutation.  This study is to help the research team understand how breast cancer is inherited through families, establish the risks of cancer for patients with mutated genes, and to figure out the best way to manage risks for breast cancer between the patient and provider.  There's no doubt that I will help out with this study, too!  This will be pretty easy....just have to complete a study questionnaire, provide a buccal/saliva sample, and provide permission to contact relatives in my family whose participation may help advance their understanding of breast and/or ovarian cancer.  As with every test I have been a part of, I just hope that the information I can provide will help them advance their knowledge on all of this!!!


Tuesday, November 1, 2016

CAN'T WAIT! (only kidding)

I got a message back from the GI team down at Mayo regarding my grease blobs every time I have a bowel movement. They are thinking that I have fat malabsorption and would like me to test for it. In order to do this, I have to eat 100g of fat every day for 6 days and on the last 3 days, collect stool samples. To put this into perspective, a McDonald's cheeseburger has 12g of fat and a Big Mac has 28g of fat. My non-stomach already feels sick just thinking about it. My doc said it would be best to stay home all 6 days and make sure a toilet is near as we will, for sure, be best friends those 6 days. She will be mailing the test out. Can't wait! (TOTALLY being sarcastic here)