It's All in My Head

To go to NIH, or not to go to NIH: THAT is the question.

For those who are wondering there is no new news on Tomas. He's still just hanging out on my neck. Following my day in Grey's Anatomy I went on a Walk to Emmaus for four days and basked in the reality of God's love *happy sigh* and following my Walk to Emmaus, we packed up and left town. We took a vacation to IL. And *I* took a vacation from Tomas. It was lovely. I didn't make Doctor's appointments. I didn't go to Doctor's appointments. I didn't spend hours on Google. I floated in the pool and spent time with people I loved and it was great.

Now we're home and I need to get back on track. And I have. I had a regular old OB appointment this week--How am I already just days away from my third trimester?! I contacted NIH again with more questions. And, after I figure out what this school schedule looks like I'll figure out a time to go get the MRI that has been ordered for a while done.

In the meantime... It's all been a mind game. I have prayed. I have ruminated. I have wondered. I have worried. And I have tried to figure out--NIH or not?

I've Googled, of course. That's led to some interesting information. The whole 'cancerous or not' issue has been clarified. Paragangliomas are apparently such boogers that you don't know if they are cancerous until they start acting like cancer, which can take years. So with most tumors you take them out and a pathologists looks at them and says, "Yep this one is cancer," or "Nope, this one isn't." But with Paras they all look the same. So unless they metastasize initially or down the line they're classified as 'benign.' Interesting, eh?  Then if 2 or 3 or even 10 or 15 years down the line if you end up with a metastasis, then....  THEN it's classified as 'cancerous.' 

And..... THIS is good news: Carotid Body Tumors really are generally benign.

I've also read a bit more about the SDH mutations and their prevalence and what it means if you have different ones. And I find that I still have lots of questions revolving around that issue and how it may or may not pertain to me and I find that if it does... I want more than just the cut it out and go thinking to prevail.

So I've collected all this information. And honestly the information makes me want an experty expert.

BUT...

I still feel like I'm chasing zebras. And that makes me feel foolish. And I don't like to feel foolish. So I worry and stew about my foolishness. Like it matters what Dr. #1 thinks who has only seen 5 of these in older people or what Dr. Crazy Hair thinks who has seen lots more of them but dismisses the possibility of a genetic component despite the vast amount of information I've been able to find just through Dr. Google about the potential for a genetic mutation especially in people diagnosed at younger ages with a para in their heads or necks.

And I think I'm starting to conclude that it doesn't matter what they think. That I am my own expert at this point. And that I do need more answers. Which means: NIH.

But then I come up against this other thing and that is: Going to the other side of the country for treatment is really complicated and scary and expensive. I don't know what it all looks like yet either past, "Call me when you have your baby and we'll schedule your visits." And maybe if I knew more about what it all would look like I could relax, but I don't know what it looks like so I'm left to look at this vastness of "I don't know," and I really don't like that. And maybe I'll end up being in the majority here and not have to ever worry about Tomas or any of his relatives ever in my life and then we'll have spent all that travel time and money and worry over nothing and isn't that silly? And then I go back to thinking I'm chasing Zebras again.

You see the problem.

It's all mental for the moment. It's all speculation and wondering and trying not to make a big deal out of a stupid silly tumor on the one hand (because... say it with me now everybody, "It could really be much worse!") and on the other hand going, "Ohmygosh I have a tumor on my carotid artery and I'm gonna need surgery (maybe on the other side of the country?) and that is really scary."

And THEN. THEN. THEN I go: Hello... Peace that passes all understanding? I need a little bit of you!!!!

And then I calm down. For a while. Because He's got me in the palm of my hand no matter which direction this thing goes. And He is good. And loving. And incredibly FOR me. And I remember the *happy sigh* love I came back to awareness of on my Walk to Emmaus. And I know that He is big enough for me to just rest.

And I get off the crazy train for a little bit.