12 Weeks Post-Op!!

Wow, I can’t believe it’s been twelve whole weeks since I had my surgery! I’m back at MD Anderson for a checkup with the doc and a nutritionist follow up. I’ve asked them to tell me what my B12 and iron levels are, in addition to my protein levels. I will update this post once I know. So far I only know that my protein levels were fine and my nutritionist was waiting for the other results. I’ll call her tomorrow for my B12 and iron.

I’ve found that I can eat an entire Chick-fil-a chicken patty if I do it without the bread. Bread just seems hard. But if I want some tasty bread, like that bread Panera makes, I can eat it separate from other foods. As long as I’m careful and chew a lot, I can do an entire bread side, crust included (and isn’t that the best part anyhow?).

Being at MD Anderson isn’t my favorite place to be. I’m not a person who really ever cries, but when we drove away from this place after surgery, I did cry. Hubbie thought it was pain from bumps in the road driving home, but I told him I had no idea by I was crying…just never been so happy to go home.

Every time I’m here I see several reoccurring things. The power of the human spirit. People have hope, perseverance. People are fighting for their lives here or supporting a loved one who is fighting the battle. And people fight hard, many with such a great spirit. In a hustling city where people are usually too busy to slow down, people have a common bond here. They see you lost or looking like you need help and they converse with you. People openly share their stories in waiting areas. It’s a community of encouragement because you don’t know the story of the guy sitting across from you, but you know they have one. Mine is that I’m the girl who looks healthy; I’m just secretly missing a stomach.

The hardest thing about coming here is seeing people that are so sick, especially on the gastrointestinal floor. You see people who, like my dad, are so skinny they look like they’ve been in a concentration camp. It reminds me how brutal cancer is when it comes to your digestive tract. It seems like the cancer fight is coupled with such extreme, severe weight loss. This place throws me back to the time in my life when I watched my dad go through all this.

Buy my saving grace is my story is different. I’m healthy; my surgery was definitively curative. So even if my stomach pathology was stage I cancer, I didn’t fight and won’t ever have to fight the hard battle. And for that I’m grateful. The battle I will fight is coming out of this to run a half marathon. I get to push through that on my own terms. Frankly, that’s the way I like it. And thanks to genetic medicine, I had that choice.

8 thoughts on “12 Weeks Post-Op!!

  1. After jumping around and reading a few of your posts, I started at the beginning and read May-August 2013 tonight. It’s getting late or I would read more. I tested positive for CDH1 in May 2015 after having breast cancer. I met Dr. Mansfield at MD Anderson in January 2016 after finding no medical professionals with any experience with the gene mutation in Kansas City where I live and eventually decided to have the prophylactic total gastrectomy which is scheduled for February 21. Your story gives me encouragement, although there are many differences. I am much older than you, in much worse physical condition and overweight. I am actually viewing extreme weight loss as a plus to the surgery. I know I’ll need to get my nutrition in, but for me, losing weight will be OK. Thanks for the blog. I look forward to reading more.

    • Thanks Linda. Dr. Mansfield is the best. What almost nobody else has experience with, Mansfield specializes in it and works with it daily. My prayers are with you for your surgery. It is such a blessing to have it behind you rather than ahead of you. I was an anxious wreck before mine.

      • Marne, just thought I’d give you an update. My surgery was two weeks ago today and I think I’m doing great. So far, my recovery is going better than I anticipated, that’s always good news. I’ve put together a little blog of my own. If you want to take a look, it’s at http://youhavecdh1.blogspot.com/. I hope you are continuing to do well. Thanks for your inspiration. I hope you don’t mind I put a link to your blog on mine.

        • Linda,

          Wow, glad to hear you are having a good recovery so far! It is so much nicer with the surgery behind you. It is a long journey to learn how to eat again. Take it one day at a time and remember it is much trial and error.

          Feel free to link to my blog. It is helpful for people researching the surgery to read through all of the different recoveries everyone has experienced.

          All my best,

  2. hello Marne. I was just wondering if you of any successful stage 3 cases that have had a total gastrostomy and are now cancer free. And for how long?
    You are truly an inspiration to us all.

    • Hi Alex,

      I’m not sure. My family members who passed away were stage 4. My brother and I had prophylactic (aka preventive) gastrectomies with stage 1 cancer. I believe a few of the ladies who administer the Facebook support group for total gastrectomy mentioned being stage 3, having their gastrectomy, taking chemo and still doing well.

      All my best,

      • Hi Marne. Thanks for the quick response. You look awesome. And so happy to see you being so active and running marathons. I am diagnosed stage3 and been told would have to get a total gastrectomy hopefully in the next few months. I have been trying to find survivors at this stage but have been unsuccessful. Thank you again and god bless you. I hope to be as healthy as you in the coming future. With your good advice I’m sure many people will benefit from your blogs.

        • Alex

          My name is Erik. I have stage 4 gastric and was fortunate to have a total gastrectomy at Hopkins in October. While I’m not totally cancer free; I have no tumors and all is under control. The recovery from the gastrectomy has been up and down but overall I’m doing well. My prayers are with you and I wanted to let you know that you can beat this even if it’s late stage. All I can say is attitude is huge as you may have additional Chemo while you heal as I do. It’s not fun, but it’s tolerable and in the long run you will get off of it. Stay positive that’s what’s critical. Lots might change in your life; but roll with it as you have your life. God bless and be well

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