Tuesday, August 29, 2017

you might want to sit down for this.

There have been too many times in my short 33 years that I felt my life has been turned upside down. That someone grabbed me by the ankles and threw me over a shoulder, bashed me against a tree, threw me like a stone, kicked and stomped and beat me black and blue. I have gone blow for blow, I've cowered, I've sulked, I've stalked, I've turned the tables. I am relentless. I am trying to get my head around this. The amount of joy and fight I have inside this body of mine is astounding. I am broken, I am blue and I am wrecked from past treatments and side effects. What I've come to learn is that radiation necrosis of the brain isn't something that will go away. In fact, even when drugs (like Avastin) are introduced, they may gradually reduce some of the symptoms (edema, brain death, speech problems, mobility problems, etc). They are likely to come back, many times with a vengeance.  When all of this began six months ago I figured it was another ride on the gamma-knife hell highway and then I would slowly coast back to a life that I had dug my heels into beginning.

Since having my off-lable (read: insurance won't pay for ANYTHING) infusions of Avastin (a drug that is usually paired with a chemo drug) I have regained what I would call "light feeling" in my right leg below my knee. I am still only able to walk by lifting my leg at my knee, but prior to my Avastin treatments I was unable to feel anything at all in my right leg below my knee. I still have a low pulse in my right foot and it hangs tilted in. I have an AFO brace that helps me walk straight and I have to use a walker (she is named Betty) because there are times I am completely unstable. I have osteoporosis and it is incredibly dangerous for me to take a header onto the floor. Prior to realizing what was causing the weakness in my right leg (read: brain tumor) it was thought that I had sprained it and when I continued to fall it was chalked up to the sprain and my general level of uncoordination.  It was only after imaging of my brain that the pieces were put together.   

Reluctantly I am tapping the breaks a bit. There is no way to know for sure how things will go moving forward. I do know this, I will be me for as long as I possibly can. I've spent a fuck ton of time honing in on who I am and who I'd like to be. I'm starting to like her a lot. I think it is important to calm overzealous expectations of recovery for me at this point. Do not take that as I am going to take this without a fight, for fucks sake, you should know better than that at this point. I am going to live every second of every fucking day with the best possible outlook, surrounded by incredible sights, sounds, friends and family. I am going to create and connect and enjoy living. I am going to laugh as loud and as often as I can. I am going to ugly cry wherever the hell I feel like it and push my walker with the best of them! I am 33 going on 99 and I am planning to use that spread to my advantage.

when one leg doesn't work and you fall, hard
I am fully aware that most people don't have the luxury that I am planning to relish in. That's right. I'm going to relish. in. this. fucking. blissful. luxury. of. circumstance. I don't need a five year plan here people, I don't even know if I will be around in 5 years. I don't know if I will have the ability to walk again, ever. I may never drive a car again. It may never be safe for me to live alone. I have lost almost complete independence. If I focus on the insurmountable list of things I can't do, probably won't "have" or "get to be" I would never get out of bed. I am doing my best to turn my thoughts into relishing in the unknown (I'm still working on it but it is a far cry from where I was). There aren't many people who are given a somewhat blank slate of what their life was just months ago....months ago I thought I was cancer free, I was on my way to "becoming something" or someone, or whatever type of undue pressure and guidelines I was placing around myself. I was comparing myself to my peers: many married with children, careers, mortgages, debts, their version of the American Dream. My dream had a 7 year pause placed....everyone's life kept going....mine was stuck in orbit around cancer and everything that cancer sucks into its universe. It is a black hole so deep and dark I psychically cringe and squint when I think of having to peer out of that hole into the real world. My perception was warped, I was wounded, I was weak and I was reckless with myself. I was throwing things together haphazardly with reckless abandon (not the good kind that makes you smile so much your face hurts for days). I was trying to patch gaping holes in all aspects of my life, failing miserably. I was running on empty, for years.

Luckily over the past year I had begun to gather up my tattered edges and weave a pattern of strength. I created patches where there were holes and those patches held up. With each accomplishment I gained a little swagger back, I could feel my feet holding me up, shaking my booty with each step. Dori was getting her groove back...and I was fucking loving it. Things were swinging the right way; stars were aligning, all the good bullshit. It was a lot of fucking work. It remains a lot of fucking work. Self-care was not something I understood during the majority of my battle with breast cancer. I thought if I put my head down and just bashed through shit I would eventually end up on the other side. This is true, I did end up on the other side...but I arrived so badly beaten I didn't stand a chance. Now, today, everyday, I spend more time care-taking of myself than I ever have. I wish I could shake the "me" from the beginning of this battle. I added a war within myself, I thought I was protecting myself, protecting others by being something I wasn't. Bravado is overrated when it isn't supported in strength. Treating the whole person should be the motto for all medicine. It should absolutely be mandatory for all patients.

hospitalization with a left lung full of fluid
I have had to let go of control (therapy twice a week definitely helps). Because I am someone who needs to control everything. I feel lost without it, I am at the mercy of others. The irony here is I have been at the mercy of cancer since the beginning. I just forgot to remind myself of that. Or I just kept getting bigger and bigger blinders on. It didn't matter what the blinder was: as long as I didn't see a straight line I could somehow convince myself that I was still steering the ship. I should have just walked the fucking plank.

I have decided to become a creative being. I am no longer going to worry about crossing my "t's" or dotting my "I's". I am going to color outside the lines. I am going to roll with the punches (and throw a few back). I am going to do the best with what I've got. I am going to power forward in a way that feels good in my skin. I am getting comfortable in chaos. This luxury of the unknown is an unexpected gift I got smacked in the face with. It left a mark, but I wouldn't have it any other way.  I am going to need help, lots of it. The scary part of the unknown, is...well, the unknown. I didn't have a lobotomy; I've chosen to re-frame my life circumstances. I vow to remain fluid and relentless in the pursuit of what makes me happy.

The eeriness of the calm that encompasses my body is foreign to me. I recognize this shift is going to take care-taking, encouragement, endurance and (staying true to myself, a shit-pot of four letter words). I am going to be angry, scared, tired, spent, exhausted, annoyed, you name it, I'm sure it will spiral through. The difference this time? I am going to listen to the feelings, share those feelings and push through them. I'm holding myself accountable to you. I need partners here and I hope that I have found my tribe (once again).

It takes a village to do just about anything. This, my story, our story, is no different.

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.