I had to revisit some older blogs to recall the exact date that I had my total gastrectomy which indicates that its no longer at the top of my mind.
Back in 2013, when I tested positive for the CDH1 mutation, I scoured the internet to find others in my age demographic who were in the same boat. Facebook groups didn’t exist or Instagram. A few people had begun blogs which I had found through a deep google dive. Blogging was just starting to become popular.
So off I went blogging and giving real accounts of what I was experiencing so others in a similar situation could feel like they weren’t alone. It was also an easy place to direct people should they have any questions about the decision making process, early recovery, pregnancy post gastrectomy, and general life philosophies.
Fast forward to the present. There are so many social media platforms where people can connect to others around the world. Many people who begin blogging about their experiences, often fade away as they become further and further away from their surgery date. I’ve always assumed they have returned to a new life post gastrectomy and are out and about living their busy lives. My goal was to continue blogging so people early in recovery could catch a glimpse of many years out post gastrectomy. Alas, I too have been blogging less each year.
Feeling busy is all relative. Since having our second child, I’ve unlocked a new level. I now have two wonderful children, a four year old and an almost one year old. I left off last year discussing pregnancy and our recent move. We are now all settled into our house living and continuing to make it our own. I think back to last year around this time and I was around 36 weeks pregnant, just about to close our new house, and to add the icing on the cake, our family got COVID. It didn’t seem crazy at the time to deal with all this but looking back on it, I laugh about how maybe it was…uh…a little crazy. Thankfully, we didn’t have it too badly and we had loads of support from family and friends.
We’re now done having children and the idea of the prophylactic masectomy is ever present. However, it continues to be a difficult decision. In my mind, it is a race against between time and scientific advancement. Although, the imaging techniques continue to advance, lobular breast cancer is a sneaky one. My lifetime risk is 40-60%. It is a fast spreader and you don’t often feel a lump. Will it be detected early enough or will I be too late? It’s really a gamble. The earliest case in my family pedigree was in their mid 40’s. I will have my next MRI and mammogram in a couple of months. I haven’t had a scan since January 2021 due to pregnancy and breastfeeding. At this point in time, I feel I should have the surgery in my mid 40’s . I think the anxiety will creep up on me if I wait too long. There’s too much on the line.
In terms of my children, I am hopeful that in another two decades there will be enough advancement that they won’t need to have a total gastrectomy should they test positive for the gene. So much has already changed since I had mine. There are a couple of major research teams that are working on learning more about surveillance as well as chemoprevention for people who are CDH1+. I must also mention that there is a wonderful group of people who are running a campaign to raise funds for an endowment fund for Dr. Guilford’s (the hero who discovered the gene) research to help save the stomachs for the next generation. Things are happening.
So nine years later, I’m still kickin’ . Life is wonderful and I’m so grateful to be on this side of the sod. Oh, and for those who are early in recovery, remind yourself that every day you’re getting better and you’re alive, even if you don’t feel it.