CDH1 Gene Mutation

One of the groups that I belong to on Facebook is CDH1 Gene Mutation. Many of the posts are inspiring stories of people who are pre or post total gastrectomy. Following along for the past few months I realized that there were not many posts that described a more open and realistic view of what one might expect, so I decided to post the following…

YOUR JOURNEY WILL BE UNIQUE! I’m grateful to everyone who shares their stories of success and setbacks. I have been motivated, encouraged, envious and jealous of the amazing experiences that many of you have shared. What follows is simply my story. I am covering a few topics that I see few posts on. Some of you may not want to read the negative experiences that follow. My intent is to be open, so that those of you who have challenging moments know that you are not alone.

PAIN! Let’s begin with “I was not brave!” (And that is okay). I have been told I am.  I don’t argue, but it is far from true. I learned that I had the CDH1 mutation in January, had and endoscopy and CT in February and a total gastrectomy at the end of April. Things moved quickly as I watched my brother lose his battle with diffuse gastric cancer. Waiting to be wheeled back to the operating room, I decided that it didn’t make sense to remove a perfectly good stomach and I should just leave. Timing and anesthesia prevented me from acting on my doubts. When I woke post-surgery, my first thought was “I’m alive.” My second thought was “OMG, what have I done?” The pain was horrible. On the 1 to 10 scale it was a 10. For me it slowly improved over the next 2 hours as the fentanyl epidural and morphine took effect. After that first day I consider myself lucky, I only needed Tylenol to manage the discomfort of spending so much time in bed. I had a nasogastric tube for 4 days which made swallowing uncomfortable and often painful. I had trouble managing feeding through the J-tube. Flushing the tube was painful because it would stretch my intestine. Being patient and flushing the tube slowly reduced this to minor discomfort. The worst pain in my life was experienced approximately 6 days after surgery. I started on a feeding tube about 3days after surgery. I had not yet had a bowel movement and this continued over the next 3 days. I started experiencing nausea and pain which went from about a 3 to an 11 (yes, this one goes to 11) in about 30 minutes. While my doctors were uncertain as to the source of the pain, I was confident that my intestines were fully distended. It is a closed tube and nutrition was constantly being pumped in with nowhere to go. I convinced my doctors to turn off the feeding tube and the pain began to subside about 20 minutes later. I also convinced my doctor that a suppository would not hurt me and had further relief about an hour later.  I suppose my point is there will be pain. You will get through it. You don’t have to be brave. Stay strong.  In reality, you can’t fully prepare for what you will go through. Your experience will be unique. Just be mindful that relief and recovery is coming.

CRYING! I hope I’m not the only one (if I am, that is okay). I lost track of how many times but a few are memorable. There were plenty associated with watching my brother battle his diffuse gastric cancer. Then there was hearing that my genetic test results indicated I carried the CDH1 gene mutation. Several rounds associated with post-surgical pain.  My daughter’s FaceTime call from her prom while I was in the hospital, since I wasn’t home to see her (some tears are happy). Learning my son inherited the CDH1 mutation. Several weeks after surgery, I began experiencing nausea and abdominal pain. I thought it was associated with my gastrectomy. Turned out to be a kidney stone. The pain became intolerable early on a Sunday morning so I went to the emergency room. After checking in at the desk, I sat down in the waiting area and began bawling. I couldn’t handle the thought of being back in a hospital. These are a few examples. Overtime, there is less crying, so for any of you feeling the need, my recommendation is cry away. 

I AM A CLUTS! I will just share one example. First day home; the doorbell rings; it is the nurse to walk me through operating the pump for my feeding tube. I stand, and the end of the feeding tube gets caught on the edge of the seat and I’m in immediate pain. It subsides quickly and I have no trouble with the nurse’s instructions and hooking myself up. I can feel the discomfort of the supplement distending my intestines.  I stand to say goodbye to the nurse and notice my shirt is wet. The feeding tube was partially displaced when it got caught. The sutures were still in place so the tube could not be replaced without opening up the incision. We decided to go without the feeding tube. I suspect I may have had more energy and recovered quicker, but it all worked out in the end. So, if you are clumsy, like me… that is okay.

GOALS! Everyone in life should have goals. I was told it would be good to set goals for my post gastrectomy life. Based on what I read and heard, I thought my goals were realistic, not overly aggressive.  I’m here to say I MET NONE OF MY GOALS (and that is okay). We can start with the goal of being home in a week. My struggles with eating, feeding tube and infection led to a 10 day stay. Weight loss… I was hoping to level off at 20-25 lbs. I’m down 40 but holding there.  I was hoping to catch up on leisurely reading while recovering. In reality, I had trouble focusing for the first 6 weeks after gastrectomy and could not recalling what I just read. I tried to return to mild exercise around 10 weeks post-surgery. My fatigue led to me waiting another 6 weeks before trying again. This time with more success. While I missed every benchmark that I hoped to achieve during recovery up to this point, I remain focused on my goals. I have made noticeable progress and I’m happy to be active and work towards increasing my strength and stamina.  

DIET! The one thing that bothers me most is reading posts regarding a anyone telling you what they can and cannot do. Yes, too much sugar will send you into dumping syndrome, but how much sugar your body can manage may be different than what works for me. The first nutritionist that saw me told me I would be on a feeding tube 24 hours a day for the rest of my life. I was 2 days post-surgery, and didn’t have the strength to educate them, so just thanked them for stopping by. I go back to my first comment… “Your journey will be unique!” No one will be able to tell you what your post gastrectomy life will be like. I have no hunger. I went 3 days without eating when I had the kidney stone because of nausea and still no hunger. I eat often and enjoy the tastes and flavors. I am constantly looking for new options that give me high protein, low sugar (but still has calories) and does not taste like cardboard. Like many, water gives me some discomfort. It will be up to you to decide how much you want to explore options. I can eat a scoop of vanilla ice cream. The same volume of cookie dough ice cream will result in dumping syndrome. My blood sugar levels drop after eating a pancake (no syrup). What’s up with that?  Mashed potatoes and applesauce are wonderful but I crave variety. So take chances.  Introduce foods slowly or in moderation. Don’t let anyone dictate what supplements to take; kids vitamins, adult, chewable, liquid, gummy; you will need to figure out what works for you. Your doctors, nurses, nutritionists have a wealth of knowledge, but they have no idea what will work best for you. So let us know what works for you. Keep sharing your experiences. Your posts help all of us learn.

GUILT! I mentioned my son inherited the CDH1 mutation. My daughter is 17 and has not tested yet. Their lives are forever changed and it is my fault. We had no known family history of diffuse gastric cancer prior to my brother’s diagnosis. My son was 19 when he learned the results of his genetic test. This was 7 months after I learned I had the CDH1 mutation. Understanding that I had no knowledge of our risk factors for diffuse gastric cancer at the time my children were conceived does not change things. Don’t argue. Don’t try to explain why my feelings are illogical and irrational. When it comes to your family, in this case my children, logic and rational thinking does not apply. I have guilt (and that is okay).

HOPE! I chose to be open about some of the reality that accompanied my total gastrectomy and living with a CDH1 mutation. This is already too long and there are more topics I could cover. Do not misinterpret this as negative. It is just my story. The truth is this whole experience has taught me a lot about life. I said that I am not brave, and that is true, but I am strong. I made it through some tough times, but I was never alone. Family and friends have been with me the entire time. Taking care of me when needed, encouraging me, telling me I looked good when I knew it was not a good day, they were the reason I pushed through every day. I am truly blessed. I am coming up on my 6 month anniversary since my total gastrectomy. My life is wonderful, and I hope it is for all of you!