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|
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 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.