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!!!!