"It is what it is." Seriously, what does this mean? We all hear it. We see this saying everywhere. I say it on a pretty regular basis myself. As I try and put this into the context of my life and what is going on right now, it makes me feel and sound seriously delayed. Like DUH!
Here's what I mean.
"I think this is a most likely a mid-grade glioma." If I repeat said catch phrase, "Well, it is what it is." We still don't know what the heck IT is! You can look it up. It's potentially "brain cancer" although we've been told several times they don't use that term to describe what they are looking at on the MRI. It's a lesion. A brain lesion. A tumor. A glioma. What it is, is....A big, old, fat, stinking pain in the neck, or rather, head! It's a "cause for serious concern because it isn't holding tight. It's growing. It looks as though it's increased in size in the last 5 months. We will most likely need to react and remove what we can, biopsy the tissue to determine the grade of malignancy and treat the rest with radiation and chemo."
This was our latest neurology appointment. We made the 200 mile round trip drive to the neurosurgeon and again left with no definite answers, only more questions. There is no way to know if this is a benign tumor, or not, without surgery. The doctor presented Scott's case to the "tumor board" on Tuesday morning and called us with their recommendations. We will wait for another MRI and one more appointment on the 5th of January to determine when or "if" surgery will be scheduled.
My emotions are mixed and it's hard to understand exactly where we are in this process from day to day, still. Scott says he is fine. And maybe he is. I don't want to speak for him. I can only imagine how difficult this all is for him, because it's devastating to me. He assures me he isn't going to die. "It's all going to be fine. This is just a hiccup and we'll get back to it soon as we can." He's awesome with telling me what I want to hear and helping me try to avoid "worrying too much."
On our way home, he literally turned and said to me, "I guess it is what it is."
"What the hell does that even mean?" I shouted with tears in my eyes.
He threw his hands in the air and confirmed, "I don't know!"
"Why do we even say that?" I sobbed.
"I have no idea." He whispered.
There is nothing else to say when someone is right. So we rode in silence for long time. He reached over and held my hand and all I could think was, "It is what it is and I can't change this no matter how much I want to."
Giving up control, is not easy for a control freak like me. I want everything in my world, at the very least, to have the appearance of being under control and well cared for. This is where I find comfort. Pretending all is well, even when I know it isn't. I do know how ironic and superficial this is. It is what it is.
There are many more hills to climb, more tears to shed, more anger to express, and the cycle of grief to live and re-live. I am no where near acceptance. I don't want this in my life, and more importantly I don't want this, AT ALL for Scott. Who in their right mind would choose this? I am obviously not in control. No matter how sad, sorry, angry, frustrated, afraid, grief stricken, and hurt I am...it will not change the fact that there is a tumor of some sort, causing seizures and headaches, growing inside the man I love. And I can't do anything about it.
So I sit and contemplate how best to show my love and undying support. I take in as much positive psychology as I can. I practice courage. I practice being kind to myself and kind to my family. I practice patience. Notice I say "practice." That is the hardest part of all. Patience...has been an extremely hard lesson for me all my life. But I have come to understand the serenity of the things out my control and knowing that what I can't change, I must live with in one way or another. It's completely up to me to decide how to live with all of this.
I'm not good at pretending. So I don't usually do it. When I do try, I don't usually succeed. I'm a, wear my emotions on my sleeve, kind of gal. If you see me with a smile, it's because I genuinely have something to smile about. My heart is a bit more heavy today than it's been in awhile but I still find reasons to smile. Even if I have to pretend I'm not dying inside. I am not sure what IT is, exactly that will bring me comfort. I'm not sure what IT is that I need because what I want, I can't have.
It's impossible to know what to do because there isn't really anything to do.... but wait for the doctor to say what he thinks is the best course of action and then to see what Scott wants to do. I know he will do what he thinks is best. I really wish we could just do nothing and keep on going like everything is as fine as it appears. I'm completely okay, in this moment, to pretend and think I can get away with it.
A stupid brain tumor. That is what it is. I know I can't really pretend it's anything else. I've tried. I don't have any hard and fast answers for why, how to stop it, or change anything about it at this point. Yes, there is a treatment. There is a glimmer of hope that we can beat this for good. So for now, what it is, is....we are holding on for the ride and doing our best to keep hunting for the kind of hope that will keep us from drowning in uncertainty.
Friday, November 14, 2014
Monday, November 3, 2014
The Ebb and Flow of Grief is the Essance of Hope
To write a blog and share with the world, or the one or two of you who are reading this, is quite an interesting thing for me. It started as a way to keep family and friends updated on Scott's condition so I wouldn't have to text the same thing 100 times or answer email and phone calls to give information about what is going on in the middle of handling a bazzillion other things. And let's face it. I'm emotional. It gets old to hear, "How are you doing?" When the real answer is far more complicated than most people want to hear in the moment.
As the months have passed and my husband's "condition" has neither changed or worsened, people have gone on about their lives, becoming less and less interested in the day to day of the Cooley's. It's not that interesting, I know..we live it. So even though my initial need has changed, I still find myself with a need to write. Not because there is anything compelling or spectacular, but rather the contrary. It's all just really regular. I suppose if I'm being really honest, and you already know I am... I just want someone somewhere to know that life, where ever you live it or what you have going for you or don't, is hard for everyone. Brain tumors or not.
No matter the circumstances we face, there seems to be a big scheme to see what we can learn, how we need to learn it and what we are going to do with what we have in front of us. I do know there is a purpose. The clear message that's been given to me through this, has opened my eyes and changed my perspective about how I'm choosing to face all of life's challenges from here on out.
We seem to go through all the emotions of life, in whatever capacity we do, to be faced with ourselves and to struggle with ourselves, in an effort to create something from nothing. And sometimes, the only purpose for our grief or pain is literally to help someone else learn something. We are, (okay maybe this is just me) complete narcissists because we often think there must be something in it for us. Why else would this be happening? Why else indeed.
I don't know about you. but I create all kinds of happy places and good intentions for myself on a regular basis. Mostly, to give myself a break from whatever hard thing is staring me in the face at the moment. There is so much pressure to be a certain way, have a certain lifestyle, eat the right diet, exercise the right amount, pin the most popular posts, or create the most shared, like, pinned, tweeted, instagramed statuses and what have you. I'm not there by any measure of the world's current standards.
But the minute I begin pulling out the invite list to my pitty party, I realize it's a pretty short list. And I don't want pitty anyway. Remember those "How are you?" statements complete with frowny faces, make me simply crazy. So pitty, please...
I know no matter what happens, that in the end I'm not stuck here in grief or pain. I am not forced to live a life of unhappy endings. I can chose to dip my toe back in and go as gradually as I need to and go with the full force of life, or I can sit back and wait for it come for me. Because now matter which way I chose, it will come. The ebb and flow of grief, or any human emotion is that way for a reason. Once it comes back to us, or we get back to it, we can take a bit more, go a bit farther, get a bit stronger and last a bit longer each and every time.
That seems so much more merciful than to be forced to soak in all the required learning all at once. Anyone who's ever been student of anything, knows that isn't how true learning occurs. Line upon line. Precept upon precept. This is a true universal concept, no matter what your personal or spiritual beliefs are. The universe is set up in such a magnificent way, to keep bringing things around, in it's own time and when it is right for us to learn, so we have infinite chances to discover, over and over again. So we can take in the relevant bits we need in that moment and apply them in a logical way.
It's the only explanation that makes sense for all the seemingly senseless things we humans have endure on a regular basis. What I've discovered is the ebb and flow is the very essence of what breeds hope. Without this coming and going, there would only be absolutes. No hope. No faith. No real growth. Only believing in what we see, and never really understanding ourselves or each other on a deeper level. There would be no benefit of the doubt, no wait and see, no real discoveries.
Will things be hard? You betcha. Will life always be what we want or how we want it? Nope, not even close for most of us. Life really does seem so unfair if you look only at events and circumstances. When we can see the bigger picture, often only through adversity, is when we are open to understanding a master plan at work that involves us having many more chances to grow stronger, help others, be better, do better, and LIVE a full life. No matter how long we've got.
As the months have passed and my husband's "condition" has neither changed or worsened, people have gone on about their lives, becoming less and less interested in the day to day of the Cooley's. It's not that interesting, I know..we live it. So even though my initial need has changed, I still find myself with a need to write. Not because there is anything compelling or spectacular, but rather the contrary. It's all just really regular. I suppose if I'm being really honest, and you already know I am... I just want someone somewhere to know that life, where ever you live it or what you have going for you or don't, is hard for everyone. Brain tumors or not.
No matter the circumstances we face, there seems to be a big scheme to see what we can learn, how we need to learn it and what we are going to do with what we have in front of us. I do know there is a purpose. The clear message that's been given to me through this, has opened my eyes and changed my perspective about how I'm choosing to face all of life's challenges from here on out.
We seem to go through all the emotions of life, in whatever capacity we do, to be faced with ourselves and to struggle with ourselves, in an effort to create something from nothing. And sometimes, the only purpose for our grief or pain is literally to help someone else learn something. We are, (okay maybe this is just me) complete narcissists because we often think there must be something in it for us. Why else would this be happening? Why else indeed.
I don't know about you. but I create all kinds of happy places and good intentions for myself on a regular basis. Mostly, to give myself a break from whatever hard thing is staring me in the face at the moment. There is so much pressure to be a certain way, have a certain lifestyle, eat the right diet, exercise the right amount, pin the most popular posts, or create the most shared, like, pinned, tweeted, instagramed statuses and what have you. I'm not there by any measure of the world's current standards.
But the minute I begin pulling out the invite list to my pitty party, I realize it's a pretty short list. And I don't want pitty anyway. Remember those "How are you?" statements complete with frowny faces, make me simply crazy. So pitty, please...
I know no matter what happens, that in the end I'm not stuck here in grief or pain. I am not forced to live a life of unhappy endings. I can chose to dip my toe back in and go as gradually as I need to and go with the full force of life, or I can sit back and wait for it come for me. Because now matter which way I chose, it will come. The ebb and flow of grief, or any human emotion is that way for a reason. Once it comes back to us, or we get back to it, we can take a bit more, go a bit farther, get a bit stronger and last a bit longer each and every time.
That seems so much more merciful than to be forced to soak in all the required learning all at once. Anyone who's ever been student of anything, knows that isn't how true learning occurs. Line upon line. Precept upon precept. This is a true universal concept, no matter what your personal or spiritual beliefs are. The universe is set up in such a magnificent way, to keep bringing things around, in it's own time and when it is right for us to learn, so we have infinite chances to discover, over and over again. So we can take in the relevant bits we need in that moment and apply them in a logical way.
It's the only explanation that makes sense for all the seemingly senseless things we humans have endure on a regular basis. What I've discovered is the ebb and flow is the very essence of what breeds hope. Without this coming and going, there would only be absolutes. No hope. No faith. No real growth. Only believing in what we see, and never really understanding ourselves or each other on a deeper level. There would be no benefit of the doubt, no wait and see, no real discoveries.
Will things be hard? You betcha. Will life always be what we want or how we want it? Nope, not even close for most of us. Life really does seem so unfair if you look only at events and circumstances. When we can see the bigger picture, often only through adversity, is when we are open to understanding a master plan at work that involves us having many more chances to grow stronger, help others, be better, do better, and LIVE a full life. No matter how long we've got.
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