So, this is a blogging streak for me! Apparently you get some extra iron in my system, and I return to my crazy ways!!
This post is just some open-ended questions that cross my mind sometimes. Short and sweet.
1. Why am I doing so well?
2. Why haven’t I had any major complications or setbacks post-gastrectomy?
3. Can I credit my crazy marathon running past with my overall health? Is this a factor in the quality of my recovery?
4. How awesome must my surgeon be?
5. Why do some doctors not by default put in feeding tubes post gastrectomy? Does the slow and steady weight loss post op as a result (vs the scary fast weight loss) prevent complications such as the gall stones that I’ve read about?
6. Do the food consumption changes post surgery bother me less than other folks?
7. Is it easier to spit out food that gets stuck, rather than being uncomfortable for 20-30 minutes?
I don’t have the answers, but these are some questions that still linger from reading about others’ experiences as compared to my own.
Happy Tuesday! I’m off to spin class in the morning under the presumption that exercise is directly related to my overall health post-gastrectomy. So long as I can make up the calories, I’m keeping it up.
Regards from Scandinavia, I so enjoy your blog, thank you! Reading your journey helps me to get on with mine. I was dg w gastric ca stage 3 five months ago and I am now three weeks post op. I am a mom, runner and a great health enthusiast, so really, not a candidate for this cancer. However God is in control and since nobody shows up early in the glory, as Matt Chandler from Village church so cleaverly put, I keep on pushing forward.Thanks to your blog, I dont feel so lonely as I did when I was administered chemo (youngest of the bunch by far).
I dont have a feeding tube, but so far have only lost 4pounds total and I did my first 5 mile walk 8 days after the operation. So I am super grateful for this progression!. I do suffer from post meal intestinal pain ( sounds similar to your brother) and painful esophagus spasms (part of it had to be cut off, due to ca, probably doesnt help the cause). Your tips have been crucially important especially!
With best regards,
Emma
Hi Emma,
So great to read your comment. You’re in one of the toughest stages of getting through all the adjustments your body is working on.
Marne
I am grateful to see this blog and other associated blogs around total gastrectomy. I had one in Dec 2010 as a result of a stage 3b adenocarcinoma. This was followed by chemotherapy and radiation. I am grateful for God’s healing hand on me as the cancer has been gone since the surgery. I am maintaining weight, run and lift weights, and eat most anything (well chewed). I would be willing to share what I have learned and also have some questions of my own. I look forward to future visits with all of you. Thank you. Frank
Thanks for the feedback Frank! The active blogging community for those without a stomach seems to have grown. And even as a blogger myself, I like being able to compare thoughts and realities of fellow bloggers on this journey.
I had a roux-en-y done as my stomach was completely removed including part of the esophagus above the valve and part of the small intestine just below that valve. I had problems with food getting stuck that first year and learned that I had developed a constriction where the esophagus met the small intestine. After a few dilatations I quit having those painful events of food getting stuck. Now I may have minor discomfort if I don’t chew my food adequately, but I take my time eating (I think that is the way it is supposed to be). Frank
Thanks a lot for writing so much about this. I am six weeks post-TG, as is my brother, and the info’s been really helpful.
Marne, do you mind if I ask who your surgeon is? My family has just found this mutation and we are trying to find doctors who have performed gastrectomies on cdh1 patients. Also did you have a good genetics counselor? Two people in our family have tested positive for the mutation so far but we don’t have a family history of gastric cancer, just breast and colon. This is all very new to us and we are trying to find the best resources. Great work on the blog!
Hi Kelly,
I love my surgeon. His name is Paul Mansfield, and the genetic counselor is Sarah Brannon. They’re all at MD Anderson in Houston.
I believe I’ve done so well because I had such a great medical team. They’re the best.
I hope this helps. I was was a nervous wreck when I found out about CDH1 and then tested positive. Researching every possible article on the internet helped me understand and feel more comfortable with the whole thing.
Also, check out nostomachforcancer.org
Marne
Marne,
First, let me say – you’re amazing!!
My name is Jana. I’m a 47 year old elementary school teacher, mom of two teenagers, and I’m an avid backpacker/mountain climber and a novice trail runner.
I was recently diagnosed with breast cancer and at home recovering now from a mastecomy. After diagoisis, I asked for a genetic test, and I’m stunned with the news I have the CDH1 gene mutation with puts me at 67-80% risk of developing stomach cancer. Everything I have read points in the direction of having a surgery, but that sounds so scary. So much of what I’ve read has been so negative.
You’re blog has been very informational and also very uplifting and positive. Thank you!!!
I look forward to following your continued progress!! 🙂
Thank you Jana!!
Do your research and make an informed decision. It was very straightforward for me since my father, aunt, grandmother and many more members of my family tree all passed away from gastric cancer. All of them died in their early 50s or younger.
The decision boils down to how comfortable you are living with your risk of gastric cancer given your known family history.
My history was very clear for me, as well as for my brother. And we both came back positive for cancer once we received the post-op pathology on our stomachs.
The recovery is significant and no one has time for a major surgery. But my mind is at ease I made the right decision. Chat with your genetic counselor and doctor.
Marne
Good advice, Marne. I plan to find a genetic counselor this week and go from there. Since I was adopted at birth and don’t know much about my biological family’s medical history, it makes it tougher to make a decision, but I will do research it and talk with doctors. Thank you again for being so open and sharing your story. You are very inspiring!