HEART-BREAKING!!!

My heart is breaking for a fellow CDH-1 mutated momma. She is 27 years old and lives over seas. She tested positive and has been doing her endoscopies every 6 months until she's done having babies. She decided after babies she will have her stomach removed (you can still have babies after surgery, it's just more tricky).

Apparently, they still do endoscopies when you are pregnant overseas and guess what? They found stomach cancer! They said they would follow back up with her... in a couple weeks and do another endoscopy and see if it had spread. If not, they would plan to take baby by c-section at 37 weeks and within that same week, remove her stomach.

She had her follow-up and the cancer spread (remember how aggressive I said stomach cancer is??). They plan to take baby by c- section at 26 weeks which is pretty quick here and immediately remove her stomach.

My heart aches for this soon to be momma of 3. At 27 years old, I cannot even fathom the thoughts rolling through her head and the pain in her heart right now. Please send an extra thought or prayer if you can!!!

This brought tears to my eyes this morning reading her update. They are not kidding around with this nasty cancer and mutated gene and a lot of mommas will, after testing positive, try to wait until after babies to have their stomach removed. You just do NOT know what is in store for you in life and it's so risky with this mutated gene and her story reminds us of this.

12 YEARS AGO

12 years yesterday my mom became our angel in heaven instead of on earth.  Every year, I think it will get better/easier and that's just not the case.  This year is especially hard...not sure if it stems from me getting older and realizing more or the fact that I had this HUGE surgery to remove my entire stomach to prevent me from getting the same cancer that took my mom from us and made her suffer an unbelievable amount....or maybe a little of both.

 

Oh how I wish she would have had the same option as me.  I KNOW, without a doubt, she would have had this surgery, also, if she had that choice.  Also, at 31 years old and 12 years later, I still want and need my mom more than ever!!!  I still have moments where I want to call and tell her things, moments where I have a quick question for her, moments I could use a great big hug from my mom.  Cherish those moments with the ones you love and never take them for granted. As much as it hurts to have her gone, I need to remember all of the great moments we had together and if wasn't for her going through what she did, I never would be where I'm at today....living without my stomach and without the extremely high chance of getting diffuse gastric cancer.  I am thankful for that part, at least!!!!

 

 

RESULTS OF MY FAT MALABSORPTION

I mailed my little present back to Mayo Monday.  FedEx picked it up a little after 4pm. The VERY next day at 1:30pm, I got a call from my doctor at Mayo and I was a little worried as it hadn't even been 24 hours since it was picked up. First thing I thought was, "Oh crap! (literally) I bet the box got damaged and there's a huge mess for someone to clean up AND I realllllllly do not want to have to redo this test."

I got a chance to listen to my voicemail and she said something to this effect, "Hi Heather! It's Sheila. Just calling to let you know we got your present and processed it. You poor girl....you must be miserable! A normal screening would be anywhere from 2-7 and yours is at a 54. Please call me back when you get this as we really need to chat."

FIFTY-FOUR!!!!! And NORMAL is 2-7!!!

So, I called her back. I was wondering if there was a max number for starters and she said, "No, not really, but I will tell you that when I saw your number I about fell off my chair as it's the highest I've EVER seen. Next closest is 45. I know you like being an over-achiever, but this is a bit much." haha! Well, we chatted and I will now be going on creon which is a digestive enzyme to help out my poor little pancreas that just can't keep up. These are little tablets and I will have to take 3-5 during every meal and 2-3 during every snack. We will re-evaluate in a month, but she thinks this will kick the extra greasy stools, bloat, and tiredness. Biggest kicker- I will probably have to do this for life. Not the best of news, but expected....and if this is the only issue I've had/will have, I'll take it!!

DAY ONE OF FAT MALABSORPTION TEST

DAY 1 went....AWFUL! Just being honest here. I don't really feel like this 100g of fat/day thing is really for someone that doesn't have a stomach and for someone who has, since surgery, become lactose intolerant. I feel like I should be trying to take in fat grams however I can whether I'm eating or drinking. I haven't found much for drinks that have fat grams in it other than milk. So, it's been far from fun.

I won't go into great detail regarding the bathroom, but I will let you know that I changed the toilet paper roll TWICE yesterday and already ONCE this morning. Also, I'm not able to feel "full" anymore without a stomach, but I can tell that I am by the ache I have in my gut after eating. I'm trying to eat SO much and things I don't have very often just to get in my fat grams that I even ended up throwing-up yesterday morning. Along with the throwing-up came dizziness, becoming light headed, and really just wanting to sleep!

I just want to have my Lifewater or water, fruit cups, applesauce, green beans, and chicken like normal, again. I'm actually over having breaded chicken breasts, oreos, milk, chips, corn dogs, etc. NEVER would have thought I'd feel that way, but I feel like my appetite has changed quite a bit since surgery just knowing how my body reacts after having these things.

Today has been a LITTLE bit better. I've had ZERO milk, but I had a piece of peanut butter toast for breakfast (with 2tbsp of pb) and then about an hour later, I had 1 oz of cashews. I was gagging getting the last 3 cashews down and am just thankful it didn't come back up. I had M&M's about a half hour ago and am gearing up for lunch. I'm having 8 mini-corn dogs as that's 23 grams of fat!!!! However, I already feel nauseous just talking about it. Shortly thereafter, I will be napping....this kind of food makes me feel super lethargic, so I look forward to that...as long as I'm not awaken needing to use the bathroom, again, like I was yesterday!

Cheers to another day...or something like that. BRING ON MONDAY!!!!!!!! I've NEVER been so excited for a Monday in my WHOLE life! HAHA!

FAT MALABSORPTION TEST STARTS...TODAY!

TODAY I start my fat malabsorption test. This will consist of 6 days of eating a minimum of 100g of fat with the last 3 days collecting stool samples. From what I was told, the toilet and I will be really good friends by Sunday! Can't wait!!! (total sarcasm here)

In light of the situation, our mischievous elves are here to cheer me on.  Miss Paige got a kick out of this, also!!!

HOW AWESOME IS THIS?!?!?

HOW AWESOME IS THIS?!?!?

 

 

I am part of a group on facebook with other CDH-1 mutation carriers.  A gentleman by the name of Isaia Piho posted an amazing update that I just HAVE to share with you!!!  He, too, has had a total gastrectomy.  I am not attaching the pictures he posted and speaks of and as you read and as you read this, his daughter looks to be about 3 or 4 years old. (my daughter is almost 5 years old and has a 50% chance of this mutation...this gives me SO much hope!)

 

 

"Kia Ora everyone. Just thought as it's coming into the Christmas season that I would take the time to introduce you to an amazing man and a good friend - Professor Parry Guilford (tall man on the right - I'm just shy of 6'2). Parry is what you would call the world's leading expert on CDH1 mutations (in fact he discovered them). We are lucky here in Dunedin to have him and his team based here so we catch up with them regularly.

Parry keeps a picture of my daughter on his door as a reminder of a timeline promise they have given us. That is to have alternative to TG by time Tiare-Joy is at the age she is due to be tested. Every 6 months we give them a new picture of our beautiful daughter for inspiration to him and his team. Truth be told is he and his team are inspirational to me.
Unfortunately our generation are too old for alternative therapies yet, however our visit last week to the university laboratory had Parry and his team revealing their latest breakthrough with us. They have successfully grown miniature stomachs which will allow them to "field test" medication all within the lab. It is early days for human clinical trials but it's hopeful news for our future generations. It may not sound like much but there is some genuine excitement here in the deep south
So from me and my family I wish you all a Merry Christmas and remember to stay positive and continue to support one another
Isaia"

MY STORY ON KFYR-TV

A little over a year ago I reached out to one of our local news stations about my little journey.  Of course, at that time I was on the other side of surgery...preparing for it, scaring myself silly, and not really knowing exactly how it was going to go for me.  I decided to reach out to the reporter who did my story then to see if he wanted to do a follow-up.  He agreed and below is the link to watch my story. You can feel free to watch my story AND/OR read the article.

Of course, during the interview I was so level-headed.  I knew exactly what I wanted to say and it went so good.  When I saw the report/video all put together, it put the feelers back out there for me and made me cry.  Things like this remind me EXACTLY why I decided the way I did!

http://www.kfyrtv.com/content/news/Bismarck-woman-has-no-stomach-for-cancer-403856116.html