This time last year, I just been moved to the ward from the step down unit at the hospital. I had survived my first two days without my stomach and was doing well. I didn’t know what the next year of recovery was going to look like but I knew there was going to be an adventure ahead.
Jump forward 363 days later. I’ve lived for a full year without an organ that tried to kill me. I have tried to look at every day with positivity and optimism but I can assure you all that not all of the last days were hearts, sunshine, and rainbows. Majority of my days are great days but there are also days of challenge and frustration. It’s hard to reflect on the past year without becoming overly emotional as it was definitely a year of personal growth.
I’ve learned that perspective is everything and it goes a long way. From the day I found out I was CDH1 positive, my perspective on life has changed and although I was optimistic before, I became even more so. It may seem odd to say that I became more optimistic when finding out I have a gene that puts me at a very high risk for stomach and breast cancer, but it’s the truth. I was given a choice to stop cancer before it stopped me. I also knew that feeling sorry for myself would get me no where so mine as well make the best of it!
When I have a hard day, Brandon reminds me that the alternative could have been a lot worse. It is all too true. When I look back over the past couple of years, I did have a lot of heartburn and the indigestion was worsening. I’m pretty sure that I would have died of diffuse gastric cancer if I did not remove my stomach. So, if I have issues eating, I just take a moment and try again later. If at first you don’t succeed, try, try again, right? If I had an issue rolling over in bed or lying down, just braced yourself and told myself that it will get better. When there’s a will, there’s a way. Any day I can get out of bed is a good day because there are so many people who cannot.
I’ve also learned that you should never take your family or friends for granted and that you are more loved than you know. I’m so thankful for all the support from family and friends during my recovery. Words cannot even come close to expressing how thankful I am for everything. Without friends or family, this year would have been a lot more difficult. I also developed a great network of new friends who also are stomachless due to CDH1.
I’ve struggled a lot with my work/life balance. Prior to surgery, I was a go-go-go person. Even in the hospital I would ask the doctors when I could start doing this or that and they would remind me to take it easy because I just had a big surgery. When I could not consume enough calories, was forced to cut back on my activities which was a really difficult thing for me to accept. My body was telling me to SLOW DOWN. I think the hardest hit was when I tried to up my work hours and then realized it was not working and had to cut them back down again. Being a physiotherapist was and still is part of my self identity and something I really love doing. Cutting back was a difficult thing to accept and I am still working on returning to full time work. Thankfully, the company I work for has been incredibly understanding and I have been able to supplement my hours with administrative duties as I am now managing a few clinics in the company.
My energy level has still not bounced back to 100% and I am trying to push myself hard again because I’m not willing to accept that this is the way it’s going to be for me for the rest of my life. It’s like when you first start to work out. At first you are really tired and sore, but once you push through it, you are a lot more in shape and have increased endurance. I’m not back to normal yet, but I remain optimistic that I will get there if I just keep pushing myself a little bit at a time.
Although I’ve been told it is one year recovery post total gastrectomy, I know I’m still improving. I’m able to eat as much as you’d expect a thin person to eat and my weight is maintaining at a healthy 110lbs. I am a hobbit and I eat second breakfast, lunch and dinner. I have difficulties staying hydrated but I’m working on it. I’m always the last one to finish at the dinner table but that’s okay. My baseball season just started and I was able to jump back into it as if I had never left (although I was sore for 3 days after…haha). Thankfully, I’ve been able to return to the activities I participated in prior to surgery.
Living without a stomach is not a bad thing. It’s just different. Depending on how you look at it, it could be one of the best or worst things that happen in your life. No stomach, no problem.