It’s been 3 weeks now since my last surgery. It’s amazing what 3 weeks can do. 3 weeks of taking care of myself — eating, hydrating, walking, napping in the hammock, reading, gardening, much alone time, time in nature, enjoying our amazing weather, and the list goes on. It can be challenging to ‘rest’ since we are so used to the hustle and bustle that is life. But yet again I find myself learning to enjoy this quiet time and accept it. And not just accept it really. Too embrace it. Really lean into it. Which is really kind of freeing and liberating. Some days I focus a little more on the to do list while other days I just do what my heart so desires.
When I wrote that first sentence ‘it’s been 3 weeks now since my last surgery’ I can’t help but focus on the word ‘last’. This was the best word I could came up with to accurately and efficiently describe which surgery I was talking about. Which blows my mind. My entire life, I’ve been a pretty healthy person. Every time I would go to a new doctor it would take just a minute to tell them my very small medical history. I was so proud of never having surgery and not taking any medications. Now when I go to a new doctor I feel I should take a sheet of paper with everything on it to make sure I don’t forget something. I’ve now had 5 surgeries in the last 4 years. And while I still don’t really take any medications, I need to take several supplements. Crazy how life takes you on journeys you never would have thought you’d be on.
Last week I had a breast biopsy. To back track a bit, before I left for Maryland, I got a call telling me my recent mammogram showed some questionable spots so they wanted me to follow up with an ultrasound. Once I got the ultrasound the radiologist came to talk with me. The spots looked like cysts but because of my 42% lifetime risk of developing breast cancer, she wanted to biopsy it. Of course I cried at first because I cry about everything. But it didn’t take me long to agree with that advice. Better safe than sorry, right? This is what surveillance is about. Better to catch things early rather than late. The biopsy was super smooth. The medical professionals were amazing. You can tell they truly care. The radiologist called me the following day to let me know it was benign. Literally as soon as I hung up with the radiologist, my gynecologist called me. Yes, the one who convinced me to get genetic testing in the first place. She wanted to let me know the biopsy was benign. Thank goodness!! I really wasn’t concerned about it based on what they told me from the ultrasound, but it weighs on your mind a bit, ya know.
The reason I even bring this up is because I do have the option to have a prophylactic double mastectomy. I’ve never been opposed to it. I’ve always known my breast cancer risk is higher than the general public and that I could do reconstruction if that was the route I chose to go. But in the last year or so I’m realizing I don’t really want reconstruction, which is really difficult. I have no interest in having any foreign bodies in my body if I can help it. And some of the options I’m not even sure are viable options for me since being so thin from the gastrectomy. So, I need to get in to see a high risk breast specialist. Just to talk everything out. Might as well have a relationship with them now just in case I need them. So I’m thinking that’s the next step in this crazy CDH1 journey. And right now, I just can’t even imagine having yet another surgery. Especially since breast cancer is so much better screened for than diffuse gastric cancer. So for now, I’m choosing surveillance every 6 months and we’ll see where that takes me.
Back to recovering. Sorry, I’m a bit all over the place. Had a virtual follow up wait my surgeon today. That went well. He confirmed I need to take the full 8 weeks off to fully heal. My risk for incisional hernia is pretty high because they’ve now opened my belly up 3 times in the same incision. So we discussed some exercises that are safe since I’m going a bit stir crazy here. Going to try a decent inclined short hike tomorrow and see how it goes. It’s going to be great!
