Tuesday, April 18, 2017

#Lollibback #vengeance

As I sit down in bed to type this tears, start rolling off my cheeks before I can even get my laptop open. I want grace and calm in the face of the storm, I'm a melting pot of oreos and mouth sores. I have reached the limit of feeling comfortable asking for help. I mean how many times can someone get sick before it is the "here she goes again" eye roll and the "woe is me".

I spent a good chunk of the last few years isolating myself from most anybody and anything. When Scott left I was not in a good place and I had been put on so many benzos I was a walking zombie. I was also taking Keppra (a seizure medication) that gave me Keppra Rage (read: steroid rage). I had the hardest year of my life, I worked diligently with a professional and got off all the tens of meds that were doing so much more harm than any amount of good at the time. It was a fresh start. I was finally able to be in my head, it was a glorious place I had missed for so many years. I started to find joy in small things, basic things, daily things, fuck, just JOY! I would go to sleep with a smile on my face and all be damned if it was there in the morning. For the first time in 6+ years I was sleeping through the night, working out and getting things going.

My appreciation for the love and support of others left me at a loss of words. They were doing their best but were caught up in the roller coaster of medications that weren't working the way they should. I was given a cancer-free diagnosis and finally was able to get in off the extremely long wait list of an anxiety-based PHd Therapist! It was looking like physically my body was going to cooperate enough to get some stuff done "upstairs".  Things were going great.

...they were going...

Then one flippant comment got stuck in my throat like coarse stones. I couldn't shake it. I was on my way to a "routine" MRI (under GA to check on Lolli) with my sister Kerri. They were going to take out my port Mavis at the same time...because Lolli had been dormant and about the size of a pencil eraser for long enough all members of my team agreed. That flippant comment? "Well if Lolli's back I'll just be gamma-knifed again, no biggie" (it may have involved shooting lasers with the tips of my fingers like some crazy childs gamma-knife gun).  After Mavis was removed and Kerri and I were on our way back from Seattle I received a voicemail from the brain tumor center where I normally would go for a "routine" follow-up. They were wanting me to go to see my neuro doc at Gamma-Knife, the next week. Those coarse stones where held in only by huge gasps of air that were not sounding remotely human. So I started returning phone calls until I would find someone who would tell me what the fuck was happening....apparently they thought a weekend of "not knowing" would be okay.

 I. Disagreed. wholeheartedly.

I finally spoke with a nurse who told me that in fact Lolli had grown to the size of a jelly bean in a little over a month, which is a big change considering it hadn't been active. In the matter of a week I sold my house, signed a lease, had my second round of gamma-knife and moved.

I truly wish this is where this story took a bow and got the fuck out of my way, but no short and sweet here. I have lived in my new place for almost two months now, since I've lived here Ive had to call 911 twice: once was for headache/brain swelling/etc post gamma-knife and the other was because I took a hard fall and couldn't get up. Knowing what we know all the things that have happened were interconnected, it is just harder to piece them out piece by piece. In the span of a month Lolli has gotten 4 times bigger than at the time she was treated with gamma-knife. We were able to tell that from a CT done at my most recent trip to the ER. Last Friday I underwent general anesthesia and had some more brain MRI imaging done. Yesterday I was able to meet with my neuro doc, things could be much better. Since the fall a few weeks ago I haven't been able to move my right foot at all, it hangs limp. The amount of swelling and Radiation Treatment Effect in my brain are causing neurological deficits; they don't know if or when or at was cost I get them back. I have radiation necrosis, which increases each time you have gamma-knife; it is in essence more scar tissue that can act up and fuck up my shit. Consider my shit fucked up.

I have to use a walker or a wheel chair. I can't drive a car and the damage could very well be permanent. Not to mention if we can't get the symptoms under control, it could get worse. Lolli wasn't a good surgical candidate because of where is is located in the left side of my brain, right smack in the middle where the use of motor function on my right side could be effected.

They upped my steroid dosage again yesterday, hoping it will help with some of the swelling in my brain. I am going to be doing a chemo-like infusion of Avastin that has shown to have some off-market ability into breaking up the brain necrosis. The other option is a small size hole drilled into my scalp with a laser where they target just the necrosis and that has been shown (especially in children) to have helped elevate the tight quarters.

My face has started to morph into the large, features of steroids, where I am uncomfortable and irritable all the time. I can't move or do many things on my own, which adds to layers of frustrations I didn't even know where there.  My mouth is already covered in sores and it just seems like I keep getting slapped in the face. I try another avenue and BAM right to the face.

I'm calling on my tribe. This time I'm not zoned out into a world of pills, I have to absorb every ounce of this hellish shit that floats in and out of this head of mine. And i'm fucking terrified. I'm not even sure why I expected things to go differently, but I did. I made it out of the hellish marriage, out of the damn house, fuck even into a new house, even with gamma-knife round 2 to boot. I thought "I did my part here, time for some shit to work its way in my favor..."

I am going to update as much as I can on social media and my blog. I am feeling pretty disconnected and would like to close that gap. The past few months have just been a lot to take in and now it is time for some trial by fire.