Why is house keeping banging around cleaning the other half of the room at 12:30 AM? To wake me long enough to let you know I’m doing okay.

Life is filled with milestones. This is another. Thank you for all the wonderful and amazing experiences I had up to this point. Looking forward to many more new adventures as I begin a new phase.

Yesterday was Conor’s birthday. Couldn’t think of a better way to celebrate than picking him up at St Joe’s and going to the Phillies game. Would have been better if they won, but Sue, Kiley, Shanna, Conor and I had a good time. If you are wondering what was the last thing I ate… chickie and Pete’s crab fries! Do you think they will give me a free life time supply? Won’t cost them much with the small volume I will be eating.

I had many requests to meet for lunch or dinner recently. For those of you that I did not get to have a “last meal” with, I look forward to our first meal together.

I am trying really hard to respect the privacy of my neice, Tara, and the challenges she faces so up to this point I haven’t said much about her. Last night, she also attended the Gastrectomy Support Group. It was interesting to meet others from the same family that had surgery. At the end of the meeting, I was happy that she was there to talk to. Although the comments about recovery created a lot of anxiety for me, Tara confirmed what my mind kept going back to. We both realized that everyone there was glad they chose the surgery and pleased with their new lives. I left with some peace of mind thanks to Tara.

Yesterday, I attended the Gastrectomy Support Group. The idea was that it might be helpful to hear from others who have gone through the surgery. After a nice presentation by a genetic counselor, I spent most of the session, wanting to not go through with this. Everyone agreed that they hated the nasogastric tube after surgery. It was painful, uncomfortable and they all couldn’t wait to get it out. Most of them also hated the feeding tube. The pain led some to give up on using it. One of my concerns is that they were all disciplined about tracking what they were eating. When I asked for advice they told me not to worry about it. “You’ll eat something, throw up and after a while you will want to stop throwing up and know not to eat that anymore.” And, “The pain and diarrhea from eating the wrong thing will force you to be organized”. Story after story about pain, vomitting and diarrhea. In spite of these awful stories, I realized one thing, they were all happy. Some had gastrectomy because they were diagnosed with cancer. Others were like me, CDH1 positive. Those that chose gastrectomy because they were CDH1 positive all had a similar story. After watching someone they loved fight cancer, the decision was easy. Just as I had read, everyone there had a different story. Someone couldn’t eat meat, another ate meat all the time. Some used wraps for sandwiches while another could eat bread and rolls. Some ate salads as soon as they got home, others didn’t start vegatables until months after surgery. Some couldn’t sleep flat because of reflux, others slept on their back. After listening, I realized some of my goals may be ambitious. For some, it was a few months after surgery before they were cleared for cardio. I guess that is part of the reason for me writing, just to keep track of my progress.

I was asked if I thought it was helpful to go to the meeting pre-surgery. I told them the truth, made me want to cancel my surgery. It also made me know that whatever challenges I face that, I will have support. There are others who have been through this. They offered pleny of advice. Which protein supplements work for them. Make sure to add probiotics. Liquids and chewables are required, no more pills. The one thing they all agreed on was that WINE was an important part of their diet. I’m grateful that there are people out there who are open and brave enough to share their experience. While last night was the first time I panicked about surgery, I have a better vision of what to expect, and I know that with each passing day, week, month, things will improve.

No way to know how I will respond after surgery. However, I’m going to set a few goals now and in writing to keep me on tract for recovery. I should expect to lose 20 to 30 pounds. I’ve been eating without restriction the last 3 weeks trying to put on a few pounds. I will weigh myself on Thursday with the goal of keeping my weight loss to 20 lbs. Sue and Kiley joined me this weekend in sampling some protein shakes and bars. I was happy to see that there is quite a variety that are high in protein (20 – 30g) and low in carbohydrates (1 – 4g). In general, they fall short of the actual flavor of that they try to mimic. (Note to self, eat some real cookie dough this week.) The good news is that I can tolerate them enough that I’m not worried about supplementing my diet as needed.

I bought a few books to read. I have a to do list at home that won’t involve physical stress. Physical goals might be harder to set and keep. Since March, I stopped spending time with family along with a sore shoulder has keep me from karate and the gym. My plan is to get back to both by the beginning of July even if the workouts are light. Eventhough we try to avoid contact when sparring occassional contact happens. I will need to wait for the doctor’s clearance to return to activity that would involve physical contact. If I can make it back to the dojo, I will try to get myself into enough condition to attend fall camp. I have no reference for setting these goals and I may fall short, but I need to have some direction and measure of progress. I’ll start with walks on the hospital halls, around the house, eventually around the block, and progress from there.

Normally the food we eat moves from the esophagus into our stomach where digestion continues. In time, the bolus of food moves into the first part of the small intestine, the duodenum, where the acid pH of the stomach is neutralized and chemicals from the duodenum, liver, gall bladder, and pancreas assist with digestion and absorption of nutrients. The food then moves to the second part of the small intestine, the jejunum, where digestion and absorption continues.

The procedure I will have is similar to the roux en y procedure that people undergo to lose weight through bariatric surgery with the addition of removing the stomach completely. The stomach will be disconnected from the esophagus and duodenum and removed. This is not a laproscopic procedure. The end of the duodenum will be sutured shut. The small intestine will be cut near the junction of the duodenum and jejunum and the proximal end of the jejunum will be attached to my esophagus. The distal end of the duodenum will then be attached to part of the jejunum.

So you can see that I will be losing a big sack and what I eat will enter a much smaller tube. I will have to substitute my 3 regular meals with 5 or 6 small meals throughout the day. I will start with liquids and soft foods then slowly add to my diet. Eventually, I will be able to eat whatever my body can tolerate. Sugars can be a problem. Some patients become lactose intolerant. It will be trial and error. I need to make sure I get enough protein to maintain muscle mass. One of the important functions of the stomach is its production of intrinsic factor. This allows the body to absorb vitamin B12. Vitamin B12 is important for the production of normal red blood cells. A B12 or iron deficiency can lead to anemia. If this happens, I will have to take oral B12 and iron supplements. If that doesn’t work I would get monthly injections. It could take up to a year for my body to adjust to the new regiment.

It wasn’t easy “celebrating” a birthday two days after Brian’s funeral. After taking Kiley to the barn and watching her ride, I thought it would be nice to go out and cross a food category (Mexican) off the list. After we were seated, and to my surprise, Conor walked in. Dinner with the family is the best present. I ordered the dinner special that had a bit of everything, so I don’t think I will be craving Mexican food in the near future. And of course dessert, because as my neice Tara says, “It’s bulking season”. This was followed by Insomnia Cookies complements of my cousin, Greg, and his wife, Barb. And then presents: A nice robe and slippers for my strolls around the hospital hallways for excercise and to avoid boredom. Lots birthday wishes and posts from friends and family made it a good birthday.

My dad, his brother, and his sister each named a son, Brian. My brother (left) had cousin Brian Higgins (center) do one of the readings at the funeral and the other Brian McGuinness (right), played guitar and sang with the church choir at his funeral mass.