I have had an eventful past week and lots of updates. Prepare yourself, this is going to be a longer post with ups and downs.
Last Thursday Oct 9th
I met with a dietitian who is part of my family doctor’s family health team. I had no idea they even had one but after speaking to my doctor a few weeks ago, she recommended that I see her. I wasn’t sure how much information I was going to learn during this meeting because I had already seen the dietitian at the hospital (June 19th blog post). But, I figured even if I took one piece of new information with me, it would be worth the visit. I’m always game to learn more. Sometimes at these meetings, I’m teaching them more than what they are teaching me. So there really was nothing to lose and lots to gain.
A few times during the visit she referred to gastric bypass documents. Rachel brought up a good point that the goals of a total gastrectomy for CDH1 mutation is to gain weight and not lose. So the dietary restrictions are similar but also a lot different. We want to gain weight not lose. However, I did learn at the end of the meeting that a small amount of B12 is absorbed into the body by osmosis. She also identified that I do not drink enough water during the day and should attempt to drink more fluid in between meals. So the meeting was a win-win.
Thursday evening, I ate a handful of food and something gave me the WORST gas pains I have had since the 2nd day after surgery. I was telling people that I couldn’t remember the pain that I experienced that day but that I could only remember that it was really painful. I now remember what that pain felt like because I suffered for two hours after eating dinner. I am not sure if I ate too fast or too much but it was awful and spent two hours curled up on the couch in the fetal position. It was brutal!
Friday Oct 10th
I had my much anticipated third dilation. My mom, her friend and I all made the trip back to the big city. My appointment was for 11am and was promptly brought in and gowned up by 11:15am. The nurses had a hard time inserting the IV but after two pokes, they were successful! Inserting the IV is probably the worst part of the procedure closely followed by the throat numbing spray. By 11:30am I was all ready to go! But, there was a delay and I was taken into the procedure room and knocked out at 2:30pm. Thankfully, I came prepared this time and was allowed to play my Nintendo 3DS! Cell phones aren’t allowed but hand held consoles are (big win!). After my procedure was completed, I was told that they were able to stretch the stricture to 15mm. So now I only have 5mm more to go!
I was feeling good in the recovery room and for most of the way home…but I took a drastic turn for the worst just before I arrived home. I started to feel really nauseous and almost threw up a handful of times. I hadn’t eaten since midnight the night before so my system was empty. I knew that I needed to eat though, so I forced myself to eat some chicken noodle soup that evening that my mom prepared. Anytime I was upright, I felt sick, so I spent all of Friday night lying on the couch. I had to cancel going to our friend’s post wedding celebration which was also big bummer.
My parents, Brandon and I had planned a big shopping trip to the large shopping outlet in Grove City, PA. Saturday – Monday. The deals are so good there we usually head down annually. I woke up Saturday still feeling unwell but I wasn’t going to back out of a trip that has been planned for months, plus, I needed to replace my fall wardrobe! I slept the majority of the car ride down and was able to muster up a bit of energy to shop a little bit Saturday evening. By Sunday, I was starting to feel like my normal self again. Maybe it was the shopping therapy? I figured all of the sickness was a side effect from the sedative used for my dilation.
After arriving home Monday evening, Brandon and I went straight to Thanksgiving dinner with his family. I was able to eat a small dinner plate of food as well as…wait for it…a sliver of blueberry pie! Big win!!
After all the activity over the weekend, I was wiped and still recovering today.
Even though I really needed the dilation, the unfortunate side effect resulted in 1.3 lbs of weight loss between Friday-Saturday morning. As of yesterday morning, I still weighed 104.3lbs. I know earlier I mentioned about not going on the scale, but this time I felt it was validated given I needed to monitor weight loss following the dilation. I actually lost weight over Thanksgiving weekend! That’s a first. Haha.
I think this is the first time I have actually felt the fear about losing the weight so quickly. After calculating my BMI, I am so close to being considered underweight and need to start picking up my A game even harder then before. I’m not afraid about my current weight, but it is concerning that I don’t have any extra weight to lose at this point. If I get the flu this winter or maybe even my next dilation, I could be putting myself at much greater health risks. Plus, I have at least one more dilation to go.
After a serious chat with Brandon, we decided that it was best for me to scale back my hours at work. It kills me to cut back because it feels like I am going backwards. However, I know that this is only temporary and gives me an even bigger reason to work on weight gain. I also was unable to hit any of the goals I had set out for myself for the month of September which was another downer. Brandon reminded me that it is a year recovery period and my year is a little longer because of my post-op complication. I am still working on my mental state about feeling positive about this change because cutting back at work has been a really tough thing to swallow (pun intended!). Sometimes I feel tired from the recovery game and just want to get back to my normal activities. However, I know that once stricture has been fully dilated, I am optimistic that I will jump onto the fast track of recovery and catch up!
I recently learned about mass gainers and am going to start mixing it in with my smoothies. I am hoping that it will give me the extra calories I need to gain the weight with minimal GI upset. If it works, it will be gold because 1.5 scoops is about 350kcal! That combined with my regular smoothie ingredients, I could boost my smoothie caloric intake to over 1000kcal. A lot of mass gainers use maltodextrin as a sweetener and I’m not sure how I’m going to react to it but I am hoping for the best. Fingers crossed! I have also been using coconut milk to add to my oatmeal instead of lactose free milk because it has 100kcal per 1/4 cup. It is pretty heavy but I seem to be doing okay with it. Fingers and toes crossed!
The book that I mentioned on my last blog arrived yesterday and I have taken a look through the first few pages of it. It seems promising and half of the book has simple recipes for breakfast, lunch, dinner, beverages and snacks. I feel like it is a great reference for dietitians as well as people who have just had their total gastrectomy and not sure what to use for a reference. It’s also a quick and easy read.
So a lot has happened over the past week and I’ve had some ups and downs physically and mentally. I found this quote while reading my book from Dr. Peter Thatcher this morning and found it very fitting for this blog post.
“By remaining as positive as possible, and by focusing on getting healthier, it becomes possible to start to feel much better about your situation. When you genuinely feel better in your mind, your body can feel better as well”. (Dr Peter Thatcher – The Art of Eating Without a Stomach: How to Thrive after Gastrectomy for Stomach Cancer).