Wednesday, September 23, 2015

Ferg-id is alive and kicking

I debated whether or not I wanted to "broadcast" this news, especially since only one member of my family is going to know about it (if she ever calls me back), but I need to tell someone and this is my only forum. I had my annual MRI day before yesterday like I do every year about this time to check on Ferg-id Quinn (and for those that don't know, that's the name I've given the benign brain tumor in my head...a mash-up of my three least-favorite bosses names). I fully expected that he would be stable and that I could go to having an MRI every two years instead of every year but that, unfortunately, wasn't the case. He has grown a millimeter (which doesn't sound like much, but when you're talking tumors, be they benign or cancerous, that's not good). If he stays on this course, I have anywhere from 5 to 10 years before he'll have to be removed. If he gets the right amount of hormones (and, considering my age, that is now a very real possibility), he could literally double in size in just a few months time or he could just stop growing altogether.

It wasn't all gloom and doom however (although I might beg to differ). He is growing away from my cortex (the middle of my brain) which is why he is so dangerous in the first place...his location. As long as he continues to spread away from it, then his eventual eviction will be easier and the less damage he can do. The closer he gets to the cortex, the more I risk permanent and more serious damage (whatever trouble he causes cannot be undone, even with removal, no matter which way he goes).

Because of his current parking space, they can't go in through my eye socket and pull him out, but they will have to literally crack my skull and they will only be able to take part of him out. Radiation will have to do the rest. He lives in an area that just can't be cut on. I'm not scared of that and, as a matter of fact, I'd prefer to get it over with now instead of in 5 to 10 years when I don't know what kind of health I will be in. But because he's still not the "right size" (whatever the heck that means), they don't want to risk the invasive surgery to remove him. I get that it is a major surgery, but I'd rather have it now while I'm still relatively young and can handle it better (and before I go blind or deaf or whatever other trouble he can get into). The thought of having seizures terrifies me and always has. A literal hair's width closer to the cortex and I'm looking at them for the rest of my life.

I've worked in the medical field most of my has my mother, my aunt, my sister, another aunt, and several cousins. I know how insurance works, how hospitals work, and how doctors think, but it still doesn't prepare me for being a patient. Patient-me has a dangerous foreign body in my brain and I want it gone. It makes so much more sense to me to take it out now while it's still small and easy to get more of it. Medical-me knows that insurance isn't going to pay unless it's life-threatening or has already caused damage (which makes NO sense because preventive medicine is always cheaper on insurance than the diseases themselves), hospitals don't like to do brain surgeries because they are expensive and use up too many resources (got no quip for that, they are just cheap and greedy bastards), and doctors don't like to not do things perfectly (because most of them really do have god complexes).

I can see both sides of the argument, but today patient-me is the dominant one and she's really upset. I'm not scared of dying, never have been, but I am scared of having seizures or going blind or deaf, loosing arm or leg movement, or even something as simple as loosing my sense of smell, taste, or touch and having to live that way. Even worse, I fear ending up in such a state that other people have to take care of me. It could happen at any second or it could never happen and I have to live with this. It's one thing to know that you could have a car wreck at any moment, it's another thing to be told you WILL have a car wreck, we just don't know when and what state you'll end up in. I hate to be a whiny-butt, but it's just not fair!

But anyhoo, enough already, it's time to get back to the real world, so here's my little companion:
If I want to be positive, my head fat is a lot smaller than it was last year...that's good, right? If nothing else, I am good at deflection! Guess I got yet another early Birthday present today, yea me.


Tiffstitch said...

Crap, crap, crap, crap, crap! Sorry you have to get this news at all, and especially this close to your birthday. Also working in the medical field I hear your frustrations with insurance loud and clear. Do you have to check back in a few months now? Or are they content to give you another year?

Heather said...

Oh man that sucks! Have you tried other hospitals to see if someone would do it for you? I agree I would totally rather do it now and get it over with than wait. Good luck! And Disneyland is coming up so you can look forward to that!

Linda said...

Hang in there Keiley. Things will work out okay. Sending hugs and happy thoughts your way.


Justine said...

I can't believe they wouldn't just take it out right away. It's very short-sighted. Sorry to hear of your troubles.

Jo who can't think of a clever nickname said...

What a terrible situation to be in. I quite agree, get it out now!
My Nana had a brain tumour removed in the 1960s when surgery was in its real infancy. She lived into her 80s which was thirty years after the operation. I think things have improved a little bit since then too so there is plenty of hope for you.
Fascinating to see your brain scan too.