My first blog post of 2020. I got my iron levels drawn this last week. We’ve been keeping a close eye on them as they have been on the low side many times since surgery almost a year ago. Can you believe it’s been almost a year?! 12 months ago I was anxious as hell in mentally and physically preparing for the one of the biggest days of my life…getting my stomach removed. I had done a tone of research and felt pretty well prepared for what was to come. I was about 45 pounds heavier than I am currently. We were all saying farewell to my stomach with lots of food, drink, and parties. Sorry, I digress.
Anyway, so far I’ve had 2 iron infusing over the last 11 months for low iron and iron store levels. Since they aren’t improving too much I am going to start taking a larger iron supplement. Which is totally fine. Obviously I was hoping my body would level itself out so I wouldn’t have to take more, but it’s fine. Maybe my body just needs more time to adjust to absorbing iron in this new way. Or maybe I’ll be taking a higher dose of iron for the rest of my life. Either way, it is what it is and it’s no biggie. When I look back to when I go the iron infusions at the NIH, I remember how amazing I felt afterward. Like, I didn’t realize how fatigued I was until I had so much energy and stamina after the infusing. So cross your fingers that increasing my oral intake of iron supplements with fix this problem. So this year can start off with more energy, productivity, and less winded play sessions with the kiddos.
I am preparing to go back to Maryland for my 1 year post op visit. My 7 year old daughter has been begging me to go with me since the day I got back from surgery. She really wants to see the hospital, Maryland, Washington DC, and go on another plane ride. I love that she wants to travel. So we are planning on going in March during her spring break so she doesn’t have to miss any school. Another positive to that is that cherry blossom season usually starts mid march! Which I’m super stoked about. When I was there in March last year for my month post op visit, I was not feeling well or in any shape to go explore and see the beautiful trees unfortunately. So hopefully we get at least a glimpse of them this visit. It’s also kind of hit or miss for the weather in March. It could be really cold still or it could be really nice. My daughter loves the cold so either way will be fun.
I’ve also learned that the NIH has started doing breast surveillance for their CDH1 patients as we have an increased risk of getting lobular breast cancer also. Which is amazing because this means I can get my yearly breast MRI done while I’m there instead of paying $1200 out of pocket at home to do it. I have yet to decide 100% what I’m going to do about this increased breast cancer risk. Initially when I first learned I had this CDH1 mutation I thought it was a no brainer…lets get rid of them and have reconstruction. But when you really get into the details of it, it’s a much harder decision. There are so many factors that come into play. Also, after having the prophylactic gastrectomy it’s difficult to fathom going through another major surgery. I’m definitely not planning on doing anything surgical this year and will just do my MRI and mammogram for screening. Hopefully by the end of the year I will have come to a more concrete decision. As for now, I’m still adjusting to this new life and body and hope to do some more traveling this year.
Until next time…
