Tuesday, March 21, 2017


So, along with a total gastrectomy comes rapid weight loss. Along with rapid weight loss comes gallbladder attacks. Knowing that so many TG patients have to have their gallbladder removed after surgery, I asked Dr. Kendrick if he would just take mine while already in there removing my stomach. He said only if it looked inflamed. It did not, so it stayed. Because of my concern with this, he put me on a med (Ursodiol) for 6 months to help avoid this and I didn't start taking it... until 1 month post-surgery.

Here we are with tomorrow being my last day of meds. I knew it was coming and was a little nervous about it until I had a total gallbladder attack yesterday after lunch. I was in so much pain it brought tears to my eyes. It didn't help to cry, breathe or not breathe, walk, sit, stand, lay..nothing seemed to help. So, I marched myself to the walk-in. The doctor there said I could go straight to ER to get an IV with pain meds if I would like. I HATE that feeling of being on pain meds, so I toughed it out. He did labs to make sure there was no infection and there wasn't. (my labs all looked good as far as everything goes....from B12 to calcium. Just my protein levels were down a bit, but nothing to worry about) He did an abdomen x-ray to make sure my new tubing all looked good and there were no leaks...all checked out well there, too! He said next would be an ultrasound which they couldn't do last night so his nurses will call today to set up the appointment. If no gallstones show up there, they will do a half day of testing to check for sludge in my gallbladder. Either way, he said not to be surprised if the end result is removal of the gallbladder.

I have had a pain two times in the last two weeks on that side that would make me cringe for few minutes, but it would go away. The doctor said it's normal for a gallbladder attack to start that way. They start as small bursts then become more painful and longer as they come. Yesterday, the pain went from under my right ribcage down my side and then up behind my back to my shoulder. He said to watch what I'm eating as fattier foods tend to cause that more so than less fatty foods, so I'm gonna do my best for the next few days until we figure out a solution....and hopefully NOT another surgery!!! Needless to say, I finish my Ursodiol tomorrow and I'm a little nervous....


Pretty sure it's longer than that WITHOUT a stomach...HAHA!


This surely puts things into perspective when it comes to the CDH1 mutation!!! Thanks, Nicole, for letting me share your eye-opening post!!!!  I must say, I think I would have preferred winning the Powerball lottery! HA!

"I just wanted to share something I read in an article my stomachless friend Dan Crawford shared with me about his family's journey with CDH1. I knew we were rare, but what I didn't realize was that chances of having a CDH1 mutation are about one in nine million! The odds are much better that you would become a millionaire by matching five of six numbers in the national Powerball lottery. You are also far more likely to get struck by lightning (the odds of which are one in 10,000) than to have a CDH1 mutation. We are definitely rare! I am so thankful to Dan and his family for everything they have done through No Stomach for Cancer here in the US to help families like mine."

http://thinkwritepublish.org/the-narratives/losing-yet-winning-in-lifes-genetic-lottery/ has the whole article.


Last Thursday marked 7 months since I had my total gastrectomy to avoid stomach cancer. Things are going well, but I must be getting more gutsy with my sugars.

We went out to eat at Pizza Ranch for lunch 2 weeks ago and I, of course, ate more than I should have and was uncomfortable, BUT...I, also, attempted TWO slices of dessert pizza!!!! Well, for about a half hour after lunch I felt so dizzy and tipsy feeling (as of I was drinking alcohol). Then, on another occasion we had supper at the Tumbleweed for T-Bone Tuesday. I just had chicken strips and onion rings with a Coke to drink. I drank that whole darn coke and wow...I felt like complete crap! This time, I felt drunk as a skunk from the sugar!!! I LITERALLY could not drive home as it was not safe. IF I have soda pop, I'll usually have diet, but I had a headache that evening so I thought I'd have a REAL coke not realizing how much sugar was in a can of coke.....39g!!! I am supposed to limit myself to no more than 20g of sugar per meal! No wonder I felt the way I did!!!

 So, going forward after those two awful drunk feeling experiences from having sugar....NOT alcohol, I'll be watching my sugars more. ;)

Wednesday, March 8, 2017


Today is two weeks since my Aunt Vera had her total gastrectomy.

 Surgery went great!  She was in a LOT of pain right after surgery, but by that evening they were able to figure out her pain management and nausea.  She was quite nauseous in the hospital, but since leaving the hospital she’s been great.  Very little pain, if any, and no nauseousness.  Now, she is just trying to figure out the eating and drinking bit.  She said it’s hard to get in as much fluid as the doctors would like, but she’s doing her best.  Also, she HATES when food or pills get stuck (Amen sister!).  I can honestly say I haven’t gotten anything stuck in quite a few months….I think I’ve figured out when I need to chew extra and that helps a lot!  She has her appointment with her primary doctor today and I only expect to hear good news!

 While at the hospital, I was able to go and visit one of the nurses I had while I was in for my total gastrectomy.  It was really awesome seeing her and although I surely didn’t expect her to remember me, she did.  I did have to tell her about what I had done and when, but then she completely remembered.  I was hoping to see two of my other nurses, but our schedules conflicted so I didn’t get to see them, but I did leave a card for each of them thanking them for all they did for me while in the hospital.  Mayo Clinic-St Mary’s Hospital surely has some of the sweetest nurses.  Also, I was able to see and talk with Dr. Kendrick when he came in to see how my aunt was doing.  He is SUCH a nice guy…AND amazing surgeon. I thanked him up and down for being a great surgeon and, also, had a card for him to read later.  I just wanted him to know how thankful I am for him.  Although, I never had cancer…in a sense, he still saved my life and was so kind to myself AND aunt and for that I’ll never be able to repay him.  I, also, told him that I’ve sent quite a few people his way, so hopefully he’s not sick of doing TG’s, yet.  He said he loves it, so no big deal.  The best referrals come from the patients themselves and I would refer ANYONE to him….ANY day!

 Since my aunt’s surgery, I have talked with my sister and few of my cousins.  My sister is looking into her insurance and talking with her primary doctor soon to do the genetic testing.  I know IF she tests positive, she will do the surgery, but will wait until she’s all done have kids to do so.  A few of my cousins are wanting to do the testing, also, and 3 of them will probably do it together (they’re siblings) after the one has baby #2.  I reached out to another cousin who had cleft palate (there is some research linking cleft palate to the CDH-1 mutation) and she now, too, is very interested and I pretty much had to start from the beginning and give her the low down.  I am SO glad that my family is willing to be preventative and is doing the testing!!!  I think seeing how well I’m doing helps reassure them….you really CAN live without a stomach!