It’s almost hard to believe that we are 8 weeks post total gastrectomy. In some ways the past two months have crept by, but in other ways it feels like just yesterday we were in the hospital!
Life has definitely changed over the past two months, but overall it seems as if we are both starting to settle into our new normal. I went back to work this week and I’ve been surprised at how well it has gone. I have a desk job and actually work from home three days a week, so it’s really easy for me to graze all day. I’ve been a little tired by the time I reach the end of the day, but nothing unmanageable. Nicole has been able to go to school and work in her classroom some and will start back on August 5th. As a teacher, I know it will be a little harder for her to be able to eat throughout the day. Nicole and I have both had our first B12 injections and that seemed to help a lot with energy levels (B12 is the only vitamin fully absorbed in the stomach, so we will have to supplement it).
So what hurdles and issues have we faced the past month? Around the 5 week mark I did have a week of severe nausea and trouble eating. We did some tests to rule out major complications and overall the determination was that I “hit a wall” and my new set-up just needed a rest. After a few days of liquids only I was able to start adding foods back in and have had no real trouble since. I do still have small waves of nausea, but usually it’s because I am hungry and once I eat it passes. We both still have times where we either eat a little too much or certain foods don’t agree with us and we get discomfort. Usually laying down for a little bit helps this pass. Our bodies are pretty quick to let us know if we eat something that doesn’t agree with our new set-up. What we have discovered too is that one day we will eat something and be totally fine, but the next time we try it we may have problems. Case in point: I ate a Krystal chick sandwich one evening and was fine, a few days later I had one for lunch and was dry heaving in the parking lot after. Another issue we deal with is making sure we take small bites and chew well. If we don’t do that then food becomes stuck in our chest and it’s very painful, it feels like you can’t breathe and we have to go to the bathroom and get the food up. The last thing of note is our hair, which has been falling out and breaking like crazy. This is mainly due to nutritional deficits and most people say this should subside within six months of surgery. What’s odd is how the texture of our hair has changed, my hair dresser even made a comment about it the other day. I usually have oily hair and if I don’t wash it every day it looks like I just poured grease on it, but now I can get away with not washing it every day and just using some dry shampoo. Nicole actually decided to combat the loss and went ahead and got a sassy new short-do! This is all a learning process and really every day, every week things get better.
So now the good stuff, new foods! We are getting braver and trying new things all the time. Some highlights of the past month: Reese pieces, peanut and peanut butter M&M’s, Dipping Dots, Mexican pizza from Taco Bell, cheese dip at Mexican restaurants, Subway sandwiches, Sonic cheese fries and cheese tots, shortbread cookies, s’mores (this was Nicole and she took her time, it took about an hour to finish it, but no dumping syndrome!), Mata’s pizza, and jambalaya. I still get a little nervous trying new things in public, like at restaurants, just in case it doesn’t it agree with me. Also, for both of us it seems like our weight loss has really stalled. In the past eight weeks I’ve lost 25 pounds and Nicole has lost about 10 pounds (she’s a total rock star).
We are now shifting our focus to raising awareness and money for CDH1 research. We are constantly reminded that in a decade we will be testing our children and they will face decisions if they do in fact carry this mutation. Our hope is that they have better options for screening and prevention and don’t have to go through a total gastrectomy. We are currently looking into setting up a walk to raise money for early November and will hopefully have some details on that soon.
As always, we are so grateful for all the prayers and acts of kindness that have been given to our families the past two months. Even though we are two months out, we are still very much in the early stages of healing and we know your prayers will carry us through any bad days we may encounter. Every day we are reminded of how precious life is and we are so thankful we have a chance to play with our kids, be with friends and family, and just live. Through our blog and connections in the “stomachless community” we have met several people who are actually about to have their gastrectomy surgeries in the coming weeks, so we ask that you keep those families in your prayers as well.