First off, I want to quickly thank everyone who has been following my journey. As I mentioned earlier, I started writing this blog as a way to share my pre and post surgery experience with my family and friends. Since then it has grown and I now have over 300 followers which is beyond me. Thank you all for sharing my story and helping spread awareness about Hereditary Diffuse Gastric Cancer Syndrome. Again, I am so fortunate to be on the other side of hereditary diffuse gastric cancer unlike many others battling this disease. My issues in this post are so small compared to the battles that others fight on a daily basis.
Tracking my caloric intake this week has been eye-opening. Since I started tracking last week I consume anywhere between 1,000 – 1,300 calories a day. I eat on average 7 times a day. Eating really is a full-time job. I know I don’t eat the most well-rounded meals because it’s all about what I am able to get down because the alternative is much worse. Here is an example of Monday’s intake which scored me 1,350 calories.
4:10am – Slice of Brie Cheese
9:15am – Scrambled egg with 1 tbsp of cream cheese, 2 tbsp of cream, 2 tsp of butter 11:40am – No Stomach for Cancer Super Protein Smoothie
2:45pm – 1 can of Flavoured Tuna
3:45pm – 1 Simply Whey Apple Cinnamon Bar
5:14pm – 1/2 avocado
6:45pm – Slice of Brie Cheese, Triscuit Original (4 crackers) with 100% Almond butter
8:11pm – Yogurt popsicle (made with Vanilla Yogurt and Trop50 Orange Juice)
11:40pm – High Protein Jello with a lot of whipped cream on top
This was a good day for eating. On bad food days, I hit closer to 1,000 calories which isn’t ideal. I have been recommended by the dietitian as well as the surgeon to drink Boost or Ensure. However, I think there is just too much packed into this drink and I usually end up crumpled up in the fetal position on the couch for about 30 mins to an hour. I wish I could tolerate it because it is filled with calories but it has struck out on numerous occasions. Instead, I have discovered Harmonized Protein. It doesn’t seem to upset my system and I don’t seem to crash afterwards. Hooray!!
Since I cannot eat much at a time (due to the stricture), I try to calorie load EVERYTHING. Sounds like the average person’s dream, right? But how do you calorie load if you can’t have a lot of sugar? Fat and protein! Did you know you can add olive oil to smoothies? I do now! Did you know that 1 tbsp of whipped cream has a whopping 50 calories in it? Yes please! Egg salad loaded with miracle whip….awesome….even better, egg salad on potato chips. No joke, I tried it once.
If I look at the bright side having this stricture, it has really taught me about chewing well and eating small amounts at a time. Prior to surgery, I would womp down a full dinner plate in about 10 minutes flat…if that. After the stricture is fixed, I will feel like a million dollars. I should also be on the road to weight maintenance and maybe gain (hard to do but I have heard of some people who have) . On the down side, it is really difficult to eat most foods and I have now geared myself towards soft foods or thickened liquids. I continue to celebrate every meal I can complete without having to get up and spit it up. That’s right, more high fives all around.
Every morning I wake up and weigh myself. I was feeling really great about Wednesday’s food intake and figured I would wake up and weigh the same and maybe more than Tuesday. However, I stepped on the scale yesterday and it read 107.1 lbs. I think my exact words were, “you’re kidding me right?”. I then proceeded to rotate the scale and move it to different areas of the room hoping that this was a fluke. Unfortunately, it was the same. So instead of getting really bummed out, I decided that I will eat as much as I can and do my best until my stricture gone. Being bummed out only stresses you out more and that will for sure lead to more weight loss!
Despite the low caloric intake, my energy level still continues to improve which makes being sedentary very difficult. I now limit myself to one 3-4 hour outing a day. If I go out too long, I end up forgetting to eat and that combined with increased activity is not a good combination. A three to four-hour outing is good enough for a protein bar and a portable smoothie. Anything longer, I’ll need a lunch pail! Oh and on a side note, I still feel hungry around breakfast, lunch and dinner but not other times….weird.
I also have high and low energy days. Some days I can feel close to normal and other days I can feel exhausted. I think a lot of it has to do with eating the appropriate types of food. For instance, bread always makes me exhausted about 15-20 mins after eating and it could last for half an hour to an hour. The body continues to adapt to life without a stomach.
In terms of my daily tasks, rolling to the left and right in supine is becoming easier. I continue to need reminders to stand up straight. My seasonal allergies have kicked in this past week and I have started to sneeze which is never fun. However, I’m able to blow my nose with some force now. I was going to take an antihistimine, but now that I don’t have a stomach, I am not sure if the absorption is the same and I plan to consult the pharmacist first.
I continue to have incisional pulling and the random sharp pains. Although it is annoying, it is a good reminder that I am still healing and to take things easy. Yesterday, I fell going up my stairs and thankfully my arm took the brunt of the fall. I told Brandon if I fall again, I will be going to my doctor to talk about a B12 shot again since poor balance could be a sign of deficiency. My brain is still getting used to my new body I think!
Speaking of which, I am now looking at size 0-2 sized bottoms. It is a scary thing because sometimes the size 0 doesn’t fit with some brands. But on the bright side, I can now buy a lot of awesome clearance clothing. I am still adjusting to my new body image and it is a tough thing to swallow (pun intended!) because the weight loss has happened so rapidly. I put on a pair of my Lululemon pants earlier this week and I can no longer fill them out. The day has come. I will still hang onto them for a little longer though because I can’t part with them just yet. There needs to be a mourning period. Hahaha.
I continue to wait for a phone call to book me for my endoscopy but I am following up with my surgeon again on Wednesday. My surgeon’s admin assistant is awesome and has been pressuring the specialist for an appointment for me. We have become BFF’s. I am lucky to have such a great team looking after me.
Okay, let’s eat!