I’ve had a busy week this week and lots of updates for everyone.
Wednesday I had a follow up with my surgeon. I was hopeful that this may be my last appointment but I will be returning in November. But that’s okay! It was a great appointment.
The intern who I met with gave me some great advice and I felt pretty happy at the end of the appointment. Not only did he ask me about how I was doing with my physical symptoms, he also made sure I was doing well mentally. He reminded me that it’s important to have a good work-life balance and not to rush getting back to work, especially because my job is physical. I really appreciated his advice because I am a do-er and I sometimes feel like I should be farther ahead than I am. I had hoped at this point in time I would be back working regular hours. I know recovery takes a year but I am just too impatient!
He also tried to call the hospital that performs my stricture dilations. I was supposed to be dilated beginning of September. Unfortunately, he was unable to speak with anyone and ended up leaving a voice message. He joked that he always has to leave voice messages because they never pick up the phone. As a physiotherapist who often calls adjustors advocating for patients, I fully understood and appreciated the humour. He said, “next time, do not leave the hospital without booking your next appointment”. Great advice and duly noted. It’s never fun having the dilation, being able to eat so well, then slowly having that taken away as the space shrinks back down and there’s nothing you can do about it. He said he was going to continue calling and hoped to have me booked soon. Me too!
I also received an update on my pathology report and the pathologist discovered seven more foci of cancer in my stomach. The largest one was 2.5mm which is fairly small but still scary! Just one foci was enough to scare me back in January but now the total has increased to 18. Wild. Seven more reasons why I’m glad not to have my stomach.
On Thursday, Brandon and I went for a small jog down to the local hardware store. I managed to run for about 10 minutes without stopping. I was super happy and impressed my cardiovascular system could handle it. Okay, maybe it was all downhill…but I still made it! I mentioned on last week’s update that there is a 5km Santa Claus run that Brandon and I participate in annually and this year it is November 30th. I wanted to see what I was up against.
On Friday, I made an appointment with my family physician for my routine check-in. For the past three months, I have been visiting her monthly and having blood work performed to ensure my levels are all normal. After each blood test, I usually receive a call from a nurse giving me instructions to add another vitamin or mineral supplement. First time it was iron, last time, vitamin D. I haven’t required a B12 shot yet because my levels are in the upper range of normal. Yay!
My family physician told me to stop doing strenous activity (running) and to avoid returning to the gym because my levels are still off, I haven’t had a period in a while (don’t worry folks, I’m not pregnant), and I am still losing weight. This was sad news for me but I think I’ll still do a little run/walks here and there to build my cardio back up. I continue to do my 15 minute strengthening program. I didn’t need more blood work this time because she figured it would be the same since I haven’t had the dilation yet. I will follow up with her 1 month after dilation. She also referred me to her dietitian. I’m not sure how much this dietitian can tell me on top of what I already know, but I will always take more information if it’s offered to me.
Speaking of food, I often struggle with finding something to eat for breakfast. Before surgery, I would eat cereal for breakfast. Now, it just isn’t the same because it takes me too long to eat it and sometimes I get dumping from the carbohydrates. So I switched to oatmeal. Oatmeal is great but when you eat it every day, it can get a little mundane. I was flipping through my “Oh She Glows” cookbook and found a great oatmeal recipe. Instead of adding milk to my oatmeal, I could add vegetable broth. Instead of just having oatmeal in the bowl, I could add some lentils for additional protein. It was a great discovery and I have really enjoyed the change up. I also top it with hummus or salsa.
So I think that’s about all for my weekly update. I cross my fingers that I will be called next week for my dilation.
Oh and I also have updated my “Fellow CDH1 Bloggers” page on my blog. I have come across a few other helpful resources that may help you too!