Pathology Report

My brother got his pathology report back, and he had 23 foci of adenocarcinoma (I had 4 foci). Since he’s older, this is exactly what you’d expect. Even though I knew his results would be like that, I still find this whole thing a bit crazy. You have the CDH1 mutation, go through this crazy surgery to remove your entire stomach and then the surgeon assured us no one with our mutation came back without something in their path reports. Pretty wild science. Our ticking time bomb stomachs are now our past.

I am continuing to do really well with my eating and my weight. I’m holding onto my recent weight gain and being able to get back to running regularly. I’m feeling strong enough regularly to be motivated to train. I’m keeping up my energy and now that my portion size is so nice, I’m much better able to stay hydrated. I’m able to drink my protein shake as well in between meals again without feeling like they’re so harsh on my gut.

For breakfast, my current favorite is a mini bagel with a poached egg, shredded cheese and some butter. Tastes so delicious. And it doesn’t seem to take me too long to eat it either…though I’ve adapted so well to eating slowly that I just might not realize that my “quick” is not very fast.

Hooray for being stomachless and cancer free!

12 thoughts on “Pathology Report

  1. Hi Marne, I just want to way how much I appreciate your blog. My dad had a total gasterectomy three weeks ago. He had stage one cancer and fortunately they caught it in time and will not need any further treatment besides the gasterectomy. I was wondering if you can offer me any advice. My dad was on soft foods until yesterday when he started to feel like he had shortness of breath. The doctor told him he was going to fast with the whole trying to eat thing. See my dad hates the j tube and wants to get off so he is trying to eat at a rapid rate to keep his weight up. The doctor told him to stop and slow down. He soon recovered since then has felt like he has acid reflux or what he explains is that he wants to burp but can’t. Can you relate to this? This started yesterday and he still feels the same way. Is this something you experienced? I am so nervous and want to see my dad get better but it looks like he took a step backward.

    • I’m certainly not a doctor but can tell you what it felt like to me.

      Eating slow and steady is critical. Anytime I try to eat faster and not chew enough, my food gets “stuck” and I have to throw it up. If I try to eat while something still feels stuck, it just gets worse and I have to throw up more. I think of it as getting the bite that was too big out before I can continue eating. I even have to be careful to this day, but my body has better adapted and is able to handle more than it could before.

      The best bet to maintain weight is adding little calories everywhere like they say…add butter, olive oil, some creamer, high calorie small volume foods. If your dad is still on soft foods, avocados are great. It’s ~350 calories, super soft and easy to swallow. Also remember protein…like eggs because you need protein. He could also supplement with protein shakes…no chewing required plus calories. I’ve had luck lately with muscle milk weight gainer.

      And it’s not great for nutrition purposes, but processed foods are easiest to eat and keep down. Stuff like cheez-its went well and calories are decent. (It’s also easy to have on-hand). And I try never to drink while I eat because it’s too much volume…

      As for feeling like you have to burp but can’t… Things still feel different from before the surgery. For example, in the middle of my runs, I usually get this lump feeling in my throat, have to swallow hard, maybe burp and it passes. I sometimes feel like there’s a lump in my throat and just have to swallow it down. It’s an odd feeling, hard to describe. To me, it just seems like my esophagus over time is helping push down food the same way as my small intestines. Might not be true, but that’s how I envision it based off of how it feels. It’s not bothersome, doesn’t interrupt me, just different.

      The only reflux I get is bile reflux if I eat right before bed and don’t prop my head up. I haven’t had anything like reflux anytime other than sleeping flat on my tummy.

      I think the feeding tube was perspective for me. It was annoying, for sure. But it was also a lifeline to ensure I didn’t lose weight while I was slowly but surely able to eat more by mouth. I was also mentally prepared before my surgery that I’d lose 10% of my weight going in, which I have. But most of my weight loss didn’t happen until after my tube came out. It’s a temporary part of recovery because in the last month it’s gone so well that I’ve been able to gain back 5lbs. There was no way for me to do that early on though. It’s a long road to recovery.

      I hope that helps. It’s not easy, it’s frustrating. You constantly have to try to keep eating and it doesn’t always work out. Early on, I just had to accept that some meals were a lost cause and I’d try again the next meal.

      I hope that helps. We’ll pray for your dad. Keep on supporting him.

      • Marne I can’t thank you enough for your prompt response! You have tremendously helped us! We ended up taking my dad to the er and they did admit him for observation. They don’t think it’s anything serious just trying to learn how his new body works etc along with some mild panic attacks. I again thank you from the bottom of my heart!

  2. Hi Marne, I have the same gene mutation and will be having my surgery in about a months time. I don’t know anyone in the same situation and I’m just wondering how long it took you to get back to feeling “normal” post surgery. Also, did you lost a lot if weight? Appreciate any light you can shed 🙂 Kate

    • Hi Kate,

      If you read back more at the start of my blog, I’ve tried to entitle some of them by time post-surgery. Generally, I got up to good strength 8 weeks post surgery. That doesn’t mean I wasn’t able to do stuff, just that I returned back to work and had the energy to have a full day. Most of that is just you’re tired because your body is still healing. I promise you’ll take naps after surgery for a while. 🙂

      I’d say 6 months post surgery is when eating food is more normal. The biggest life change is just always keeping almonds of some snack with you because you just can’t eat a giant portion and always eating slowly and chewing thoroughly. In the last months my portion size has gone up, I can actually gain some weight back.

      My doctor said to plan to lose 10% of your body weight. I did, but I’d gained before surgery and have recently been able to gain enough to get me at a weight I’m happy with. Most of my weight loss happened after they took my feeding tube out.

      I read some of your blog, and anyone who’s lost a family member to this knows how bad it is and how we now have a choice they didn’t have….an option to live. As long as you always keep your mind focused on that positive aspect of why you’re doing this surgery, you’ll be just fine.

      I ran my half marathon a few weeks ago (7.5 months post op) just to prove to myself and the world that you can get back full force after this surgery. Good luck with your surgery. Keep in touch.

  3. Thanks so much for your response Marne.. it’s really difficult not knowing anyone in my situation personally so to hear that you’re going so well after such a short time is a big relief. My goal is to return to work after 8 weeks so it’s comforting to know you had about the same amount of time. I also have a goal to go travelling to have something to look forward to after all of it.

    I’m seeing a dietician this week so it’s good to go in with some sort of idea of what I’ll be looking at. I’ve also gained a bit of weight pre-surgery and have been going a bit nuts with all of the food haha. But I figure if there’s ever a time to do it, it’s now.

    Thanks for your positivity – it really is the only way to deal with something like this and to look at it in a way that we’ve been given a chance our family members didn’t have.

    Congrats on the marathon! I’ll keep reading your blog to see how you’re going with everything 🙂

    Kate

  4. hi marne …im reading your blog everyday .. its keeping me motivated..
    I wanted to ask you or if anybody reading the blog had any pain on the left shoulder when eating or drinking water.. thing were going good for me .. my appetite ,,my wieght was steady ,, but for a week now.. im getting this pain on my left shoulder.. it does feel like food is getting stuck and when i try to drink water..its makes it worse and i have to vomit .. i was wondering if you tried something to relieve the pain some how .. im hoping its just something that will pass..

    • The only shoulder pain I’ve gotten was in the hospital the week following surgery. I was told it’s some sort of deferred pain from my diaphragm. There are some nerves or something connecting up through your shoulders. It was extremely painful.

      The best thing I did was apply a heating pad to my shoulder plus some ibuprofen for relief. I haven’t personally experienced it as a result of eating…I just continue to hiccup after eating a time or too.

      The doctors recommended waiting15 minutes after eating before drinking water. Also cutting water for 30 minutes before eating. Maybe try limiting your water at mealtimes and see if that helps.

  5. Wow! Well these comments on this blog have been incredibly helpful and I’m taking a lot of notes. Do you think that I should try the regular muscle milk or the muscle milk lite “less sugar”?

    • While I was on my feeding tube, I didn’t do protein shakes. It was after that. Right now I’m using muscle milk weight gainer, but my brother found Boost calorie smart. It has sucralose instead of regular sugar (so no sugar crash issues) and then a benefit it has over defined protein shakes is that it’s got all the vitamins and minerals plus a good amount of protein. A lot of the protein powders have a lot of protein and amino acids, but not the vitamins. Not sure which is best. I do know I always need protein, so I don’t think you can go wrong. 🙂

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