So if you're reading this, you most likely know that I've been diagnosed with a Carotid Body Tumor. Actually, I guess the more appropriate nomenclature is a 'Carotid Body Paraganglioma.' I do like to say paraganglioma quite a lot, but it doesn't go with 'Tomas' as well as 'Tumor' does.
So... What in the heck is that? Basically it's a growth that forms in the bifurcation of the carotid artery. They're generally not malignant, though they can be in some cases, and the chances of that are increased in younger patients (those diagnosed before age 40). The general protocol for treatment is surgery, and it's a delicate surgery because it is, after all, located on the Carotid Artery. Also there are some rather important facial nerves involved in the same general area. They grow slowly, but they do grow and left untreated they can become problematic in a number of ways, but especially if you are the rare, rare bird for whom the mass ends up being malignant.
Soon after I was diagnosed, Andrew said to me in his best Arnold Schwarzenegger voice, "It's not a tumah." To which I replied, "It is a tumah." Then we decided the tumah needed a name. We decided on Tomas (pronounced ToeMOSS). Which is why you are reading a blog about Tomas. And not... somebody(thing) else. (Pierre the Paraganglioma? Hmmm)
So how did I end up writing about Tomas? Or rather, how did I end up with this diagnosis?
I'd really like to know too. ;)
Not long after we found out we were pregnant with baby #3, I discovered a lump on my neck. Now, for years my neck has gotten lumpy and lymph nodey anytime I was feeling sick, so I chalked it up to an infection coming on. The infection never came though. In fact the kids got sick, Andy got sick. I didn't. I mentioned it at my first OB appointment and my doctor said it was weird that I had no other symptoms, but we'd watch it a while and see. It had been there 3 weeks or so at that point. 5 weeks later I had another appointment and the lump was still there and we decided we weren't going to just watch and see anymore.
So I was scheduled for an ultrasound.
Jim the ultrasound guy was super nice, despite my beginning the exam by saying, "I waited so long I was about to give up on you." But Jim the ultrasound guy asked some weird questions. First he asked if I ever felt my pulse in my neck in an unusually strong way. Then he asked me about my Thyroid. By the end of the exam, Jim the ultrasound guy looked a little subdued... And despite the fact that I had dismissed him as being a wet blanket when I asked him at the beginning of the exam if I could peek at baby after all was said and done, he suddenly switched the screen to OB and gave me a peek at the new one. And I cried. Then he told me my Thyroid was weird and assured me someone would get back to me about my other issue soon. He was extra nice. I just thought it was because he could tell I was an overwhelmed pregnant woman.... Turns out it might just have been because he'd seen something he'd never seen on his screen before and people are extra nice before changing the trajectory of a person's near future.
My doctor called 3 days later and said that things were going a different direction than expected. And he said the words "Carotid Body Tumor" for the first time. And lo, Tomas' existence was noted. My doc had never heard of a diagnosis such as this and had certainly never seen one and he began furiously poking the term into doctory search engines while I listened on the other side of the phone. He was going out of town the next day and wanted to get things rolling. But even though he was being super nice by not leaving me hanging in wonderment, I didn't find it even remotely comforting that HE was using search engines.
I got off the phone with my doctor. Called my brilliant sister-in-law. Left an alarming message on my Dad's machine, and promptly left for work.
Where I blubbered all over my clients' parents. Ahhh well.
And that, my friends, is how the existence of Tomas came to be known. And how our adventures with him began.
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