I suppose I’m dating myself with a Cheers reference, but it’s time you all came to terms with the fact that I’m an oldish lady. My fellow oldish folks know what I’m talking about. Youngins with Netflix know, too. You remember how Norm would walk in the bar and everyone would scream, “Norm!” I was a Norm in my old neighborhood. I wasn’t THE Norm because everyone in the neighborhood was a Norm. We all knew each other and our dogs and our kids and our quirks and our eccentricities. Today, in my new place in the city I’ve recently moved to where nobody knows my name, I miss being a Norm.
Nothing gives you a greater education in being unknown than the diagnosis of a rare disease. Desmoid tumors are quite rare. According to the Desmoid Tumor Research Foundation they are so rare that “out of a million people approximately 2 – 4 people are diagnosed with desmoid tumors each year.” I hadn’t even heard of a desmoid tumor before I was diagnosed in the fall of 2012. I never had a complete understanding of its complexities until 3 years after diagnosis when I finally saw a specialist.
Desmoids are technically benign tumors, as they do not metastasize. So, when I was diagnosed and didn’t hear the C word, I was beyond elated. They’ll just pluck this bad boy out and I’ll be done with it and on my way, my simple brain concluded. It wasn’t until after the surgery, when two tumors sprang up in place of the one removed, that I started to understand the aggressive nature of these beasts. So, if I, the actual patient, couldn’t fully understand what I had then it makes sense that the people around me didn’t get it either.
You’re making people think you have cancer.
Have you tried holistic medicine?
Big Pharma doesn’t want to cure anyone.
This is because your mom had breast cancer.
You should see an osteopath.
You’ll be just like you were before the surgery.
People are well meaning. They try, they really do, but when you have a rare disease you’re going to encounter actual MDs who don’t get it. That makes the advice of the average Joe on the street even less accurate and more annoying than normal. That’s why you need to find your people. You need to find the ones that know what you’re going through, the place where everybody knows your name.
After my recurrence, after Tamoxifen and Sulindac and Gleevec had failed, I watched the tumor grow bigger every day. I was starting to lose hope. My cynicism was at an all time high when I began my second oral chemo, my fourth medication. I was beginning to lose hope and I was so frightened I would have yet another MRI tell me that nothing was working. Shortly before I was to find out if Nexavar was the silver bullet or not, I reached out to a fellow desmoid patient I’d met online.
And they did know and I knew they knew and that was all I needed. When you’re going through something nobody else understands, finding someone who does is crucial. There will never be a time in your life where you will need more to feel like a Norm.
My recent move has me feeling much like I did when I was diagnosed. Here I sit, in a town where I know no one, thinking of the neighbors and friends I left behind, the people that rallied behind us and bid us a fond farewell the night before we left. I’m certain I’ll never find another crew quite like that one.
I’m lonely, but I’m not alone. My people are out there. I’ve just haven’t met them yet. Just like the desmoid friends I never knew I’d have, I’ll make those connections and get to know a new set of friends, their dogs and kids and quirks and eccentricities. One day, soon enough, I’ll be a Norm again.
If you’re a desmoid patient and you need to find your people, you have resources. Check out the Desmoid Tumor Research Foundation website or try the Facebook desmoid tumor support group Desmoidian. And, you can always search #DesmoidTumor on Instagram and Twitter.