Explaining Myself (or It’s Not Disappointment)

It’s been over a month since I was supposed to have surgery. By now, pretty much everyone in my life knows that my surgery was cancelled and the situation around that. I tried to email and text most of my friends as soon as I knew and many other people found out though here or social media. But every so often, I’ll run into someone who had no clue that I didn’t have surgery. Sometimes they are surprised to see that I’m looking so good or out and about and sometimes they are just assuming everything went fine and I forgot to tell them about it.

Each time I run into someone who didn’t know (or I meet someone new who is finding out about the situation), I feel like I have to explain the entire thing. I have tumors, they aren’t supposed to shrink, somehow they did shrink, we don’t know how it happened because I didn’t change anything in my life, I don’t know what’s next for me. And so often people tell me that I sound disappointed that I didn’t have surgery and I should be grateful that somehow I beat the odds.

It’s not easy to explain that I am grateful. I didn’t want surgery. I was stressing about surgery from the day I found out I would be having it. But at the same time, I spent 6 months knowing that I have tumors inside of my body and was excited to get them out of me. Now I only have 2 tumors so at least there aren’t 3, but I still have to be ok with the idea that there are 2 tumors just hanging out in my liver.

But even though I’m grateful, I’m still a bit skittish about this all. I am supposed to have my next MRI in about 4 months to see what’s going on (as long as there’s nothing that causes me to need a MRI sooner). Once that happens, I’ll meet with the surgery to make a new game plan. We have already discussed a bit of a plan where if the tumors are bigger I’m having surgery and if they are smaller we are going to keep waiting. But if they stay the same size as they are now, it’s a bit of a gray area.

My tumors are small enough and in a position in my liver that they aren’t as risky for me to keep as they were before. But there are still potential risks for me later in life if they stay in there. So there is this great unknown of what the next step will be or if I will be having surgery in the future. One thing I love about my OB/GYN and my liver surgeon is that neither of them are afraid to tell me that they don’t know the answer to something. But it’s a bit frustrating when neither of them know what the long-term plan for me will be.

And if I do sound disappointed about any of this, it’s because I had a plan in place. I was going to have surgery, the tumors were going to come out, and that was going to be that. Now I’m in another situation where I don’t know what my future will be and I don’t like that. I don’t know if in the fall we will have to plan for surgery and then I’ll need to do a lot of the same prep work that I had just done. Or maybe I’ll continue to be a miracle, the tumors will be smaller, and they will be small enough that there are pretty much no risks for me anymore.

The other weird feeling I’ve been dealing with is wondering at times if I totally imagined this all. Maybe I needed the surgery to make it feel real? I’ve had this feeling with some pretty intense news in the past. When I found out my mom had cancer or my grandpa died, I was almost wondering if I dreamt it and it wasn’t real. I was almost scared to talk to a friend to get support because I wondered if somehow I’d find out that it wasn’t true and would feel silly. And that’s a bit of what I’ve been feeling about my tumors. I made a huge deal about them and then it became almost nothing. I feel like I shouldn’t have made such a fuss about them (even though there was no way for me to know they would shrink). But nobody has been making me feel bad about things, only myself.

I know that most of you reading this understand my feelings. I’ve had several friends who have dealt with medical issues totally get what I’m talking about. It’s a weird feeling to want to be grateful but be worried at the same time. And hopefully as time goes by this feeling will be less intense and less often. It’s gotten so much better over the past month and hopefully the next month will make it less of an issue. And eventually, this will maybe just be a weird story that I can share from time to time without having any feelings attached to it.

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