Tuesday, January 24, 2017

8 Month Post-Op Update

We realized it had been a while since we posted an update on our post-op progress.  In all honesty, we’ve been so busy living and enjoying life that the past few months have flown by. We each have battled some hiccups and bad days along the way, but for the most part life is normal, we just eat a little bit different than most people.

We are 8 months post total gastrectomy, which is so crazy. January actually marks a year since this process officially began. I met with the geneticist for the first time at the end of January 2016. Who knew it would lead to this wild ride?!

Merry Christmas from the Bahamas! 
So what have we been up to since our last post 4 months ago? We have been chasing kids, working, spending time with family and friends, enjoying the holidays. We even took a cruise to the Bahama’s a week before Christmas! The trip was much needed and so much fun. The boys played with dolphins, hung out at the Atlantis resort, ran all over the beach in Nassau, had breakfast with the Cat in the Hat, and played their hearts out. Nicole and I were a little worried about losing weight on the trip because we were so active, but we actually ended up eating really well and it all balanced out. It was a great way to close out a hard year.


Our boys health has kept us occupied recently too. My son Andy was diagnosed with juvenile arthritis right before Christmas, so we’ve been going through testing to try to narrow down his specific form and adjusting to weekly Methotrexate injections. Nicole’s oldest son Caden broke his kneecap in a wrestling match a week and a half ago. At first they thought his femur was also broken and that surgery might be required, but luckily an MRI revealed the damage was not as bad and for now he is just immobilized to hopefully heal the kneecap. Nicole’s house has also been hit by strep and the stomach bug over the past few days, both boys have been sick. So she’s donning masks and gloves, spraying Lysol like crazy, and we are all praying she doesn’t come down with either. Unfortunately we found out on New Year’s Day that people without a stomach can still get the “stomach bug” since it actually occurs in the intestines. I got sick that morning and ended up in the ER getting fluids that night for dehydration. Way to ring in 2017! According to the GI these things will be “exceptionally violent” in us as our intestines are more sensitive due to the amount of work they do. I had a lot of abdominal pain for days afterwards and found out it was actually from swelling that happens in the intestines when you have GI bug. Since our intestines are more sensitive and we no longer have any real fat padding in the abdomen, we will just be more aware of the swelling that takes place. So we really need this bug to quickly leave the McDonald house and Nicole’s immune system to fight it off.

Around the time of our last post point Nicole was having trouble with her incision not closing. She underwent a surgery on September 28th where the wound was cleaned out and a wound vac was placed. The wound vac was a pretty painful experience for Nicole; however, it was effective. After a few weeks with the vac on the wound started to close and it is now fully closed and healed. Nicole has also had some issues with fat malabsorption and was dealing with some sickness after eating foods with a higher fat content. She started taking digestive enzymes with high fat meals to help her body absorb more nutrients from the food and they have really helped her out. They aren’t 100% and there are times she has issues with foods, but for the most part the enzymes have made a big difference in her ability to absorb and digest food properly.

Stricture (a narrowing at the area where the esophagus and small intestine were joined) turned out to be an issue for us both. I had dilations performed in August and September for what was called a “significant stricture.” At my first dilation the area was pretty much closed off and I even had food trapped in suture wire that was left from surgery. I had a really awful reaction to the first dilation and they felt it was because the area went from barely open to wide open and it was just a little bit aggressive for my system. The second dilation went much better and I finally hit my stride eating and maintaining my weight. I was supposed to have a third performed in October, but I was doing so well at the time it was deemed we’d wait until a problem arose instead of putting me through another procedure. I started having an increase in swallowing difficulties in early December so we set-up another dilation for January 13th. Turns out it was a lot worse than expected, the area was almost completely closed again and a lot of scar tissue had to be cut away before the balloon could even be place to dilate the area. I had some issues for a few days after with nausea and reflux much like the first dilation, but it passed pretty quickly this time. I will undergo another dilation on February 3rd to hopefully prevent the drastic closure that happened before. Nicole also had some difficulty with food getting stuck and underwent a dilation on December 28th and luckily that provided some relief for her. Since strictures can be pretty persistent they are going to perform another dilation on her tomorrow (January 25th) to hopefully stay on top of the issue. One cool thing that both of our EGD’s revealed is that we are both starting to form our own little stomach pouch under the anastomosis. How cool is it that our bodies can adapt that way?!

Since we both had stage 1 hereditary diffuse gastric cancer at the time of surgery, we are being monitored every 6 months for any sign of recurrence in the abdominal area. We both have had CT’s and everything came back clean! We will repeat scans again this summer. Lobular breast cancer is the next big concern we have to face and a prophylactic double mastectomy is on the horizon for both of us. We are being monitored every six months via mammogram or MRI (we both just had clean mammograms over the past month). Nicole is leaning towards having surgery in the summer of 2018. Steven and I want to evaluate my health around the two year mark to see if another pregnancy via IVF with genetic screening is possible. If so, we will pursue that route and I will have the mastectomy after having another child. If another child not possible, I will go ahead with the mastectomy sooner.

Our silly boys enjoying a train ride to the North Pole! 
Our fundraiser we held in November was very successful! We raised over $1500 to send to Dr. Guilford’s research center in New Zealand. Around the time we sent the donation we got a really cool update from his lab. They have actually been able to grow miniature stomachs that will allow them field test the medication in the lab. Our boys may be able to bypass this whole TG thing! One of the ladies in our CDH1 group collected photos of everyone’s children and took them to Dr. Guilford’s and they are now up in the lab to remind him of why he does what he does. When we emailed him telling him we wanted to raise money for his lab, his response to us was “we are confident your children will have better options.” Talk about goosebumps! In the future we will be doing other fundraisers for his research and we hope to have the same positive response that we had to our first effort.


As we approach the one year mark it seems like our bodies are really starting to adjust to this new life. They say it can take up to three years for everything to fully settle into place, but most of the big stuff will resolve in the first year. We probably won’t post a ton going forward, just because there shouldn’t be a lot of action as far as our TG healing goes. But we will posts as milestones approach, as news and developments about CDH1, TG, or HDGC/lobular breast cancer occur, any fundraising efforts we undergo or if anything crazy happens further into the recovery process. As another CDH1 friend and blogger Marne put it “the best thing about life after TG is LIFE.” So we intend to live it to the fullest, to enjoy every moment with our families, and to offer love and support to others who have to walk this path. We can always be reached by commenting on this blog, reaching out to us on Facebook or emailing us at Jessica.j.sasser913@gmail.com or mc0826@hotmail.com

7 comments:

  1. I also have the CDH1 gene mutation. I actually got there from having breast cancer in 2015 and doing genetic testing to try to figure out how to deal with the breast cancer. I wasn't expecting this other scarier thing. I first met with Dr. Mansfield in January 2016, didn't have surgery last year because of other things in life, such as my daughter's wedding, and am now 2 weeks away from my TG. What I'm struggling with right now is finding a doctor in Kansas City, where I live, to do the follow-up afterward. I know you had the surgery in Houston, but do not live there. Were you able to follow-up with a gastric surgeon at home? Or what type of doctor do you see?

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  2. First off, Dr. Mansfield is amazing!! I e had some ongoing issues with stricture and having a bad reaction to EGD w/ dilation and I was texting him on his personal cell yesterday morning and he's been working all day to get info from the GI here who has done my dilations. He just cares so much about his patients. Before our surgery in Texas we met with a surgical oncologist at the University of Alabama Birmingham who specializes in stomach/colorectal cancer. We got lucky in that he had coordinated cases with Mansfield before and they knew each other. I would definitely try to get someone on board for follow-up prior to your surgery and have Shari send all you operative notes to them after your Clinic follow-up with Mansfield. It makes everything easier as far as coming home and already having your follow-up appointment set and just having someone you can see if an issue pops up. I would definitely look for a surgical oncologist, one who is knowledgeable about gastrectomies. You may could even ask Dr. Mansfield if he knows anyone in your area.

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  3. My mom and I had our surgeries at OHSU in portland, OR and my Uncle and cousin had theirs at RUSH hospital in Chicago. Both of our surgeons were amazing as well and may be able to help you connect with additional people. I know Mayo Clinic and Cleveland Clinic have amazing gastro doctors as well. Best of luck!

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  4. 2 weeks ago today, I had my own PTG with Dr. Mansfield. I am doing amazingly well, much better than I expected at this point. I did find a doctor and dietitian in Kansas City, late Thursday before we headed to Houston the following Wednesday. As a result, I didn't get a chance to see them before my surgery, but have an appointment scheduled for next week. Just finding someone locally was such a relief. I've also put together a blog of my journey, check it out if you are interested http://youhavecdh1.blogspot.com/. I hope you don't mind that I also linked to your blog and specifically in one of my posts I link to your post about the mechanics of the surgery because I think you do such a good job of explaining it. I hope you are all doing well on your journey.

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  5. Hi, Linda! I hope you're well and settling into your new stomachless life well. We absolutely love Dr. Mansfield. I'm sure he's taken excellent care of you! We do not mind you sharing our blog with anyone. Please share as much as possible. We want to get the information out there. I will definitely be checking yours out as well. Please let me know if I can help in anyway as you move forward.

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