Monday, April 29, 2013

Climbing and Crashing

Hope is a funny thing.

It doesn't float, like in that movie with Sandra Bullock. It's more like a roller-coaster. At least when you're talking about Cancer. In such a short time, my family and I have seen many hopes climb and crash.

It started off with,
"During the procedure, we did see a tumor on the pancreas." Crash.
"However, and I don't get to say this very often, it looks to be small and likely operable." Climb.
"Your CT Scans show spots on your liver." Crash.
"They might just be bile." Climb.
"Both biopsies came back positive for cancer." Crash.

The bumpy ride has continued as we've had appointments with oncologists, submitted our records to alternative doctors around the U.S., and been met with depressing treatment prospectives and flat out refusals. When hope is taking you on such an unpredictable ride, you grow really wary and very weary. Around every corner, you hope  there's an answer. At the same time, you're terrified it's not the one you want to hear.

Hope is the fuel that propels us upward, even in the face of disappointments and disasters, but it also makes the fall that much harder on the way down. And that's where I'm at with hope. I can't live with it and I can't live without it, so we're learning to co-exist in a new way.

You might say it's a love-hate relationship.

Thursday, April 18, 2013

Life's not fair.

Over the last three weeks, I've been absent. Maybe you noticed.

In those last three weeks, my entire life has changed. All of it. Forever. I've been absent, because I've been wondering if I could and should share with a more public audience what's going on, and if yes, then how? How do I write about what I'm going through? Is it self-indulgent to write in this forum? Will it seem like I'm asking for pity and sympathy? I hope not. 

I'd sort of worked through that phase a little bit, and when my mom asked me about my blog yesterday and why I wasn't writing, it reminded me of why I have this forum to begin with. It's good for me, but I think sometimes, it can be good for other people, too. Mom, I know you're reading this, so I hope it's okay I'm writing again. I'm writing because I NEED to, not because I want to.

When my sisters and I were little and we would whine "But whhhhhhy?" to my parents, about thisthatandtheother, a typical response from my dad included some form of "Life's not fair." I don't think the true meaning was ever fully absorbed until now, at ages almost-26, almost-28, and 31. We just understood it as finality: the conversation was over, shelved, DONOTGOTHERE, zip. It was the last  semi-friendly roadblock before the ultimate precipice of "attitude adjustment." We usually heeded it. (It didn't work quite as well in middle and high school.)

I've been spending quite a bit of the last three weeks being reminded in a hard way that life's not fair. Really bad, unfortunate things happen to really good, undeserving people. All the time. I know there are much more stark cases than the one my family and I can present to the world, but my dad doesn't deserve to have pancreatic liver cancer. My mom doesn't deserve to have had her world turned upside down and shaken. My sisters and I don't deserve to feel anguish and helplessness all at the same time. At least, I don't think so. Life isn't fair in that way.

In 21 days I've experienced so many emotions I didn't even know existed within a human being, much less within me. Something inside of me feels broken. A wise friend told me that regardless of how this present situation resolves itself, "you won't ever look at the world the same way again." I know this to be true. What I've felt the most is this fiery, boiling hot anger that keeps bubbling up as tears and filling me with waves of nausea. This terrific hate toward that THING, those clusters of evil cells inside my dad's abdomen. A ridiculous, irrational fury that I can't just do this or that and fix things, and we all wake up from this nightmare and go back to normal. And, of course... I hate the unfairness of it all.

I'm going to be talking a lot about Cancer in the coming months, because life's not fair.

Wednesday, April 17, 2013

Stop this train.

On Monday, March 24th, three weeks ago, I went to bed late, tossed and turned, and never could fall sleep. In fact, I laid awake until 6:30am Tuesday morning, when I heard Tim begin to move and start his morning routine. Finally, I slept a few hours in late morning, cancelled my training session due to exhaustion, and then sat down to write about all the things that had kept me from sleeping. I'm only just now sharing them.

Tuesday, March, 25, 2013
Sometimes you think thoughts you don't want to. Sometimes I choose to write them down. 

You might say I've struggled with melancholia all my life. I think my parents will agree that from birth I exhibited signs of being a rather dark-tempered child. I was shy and withdrawn around people when I was a toddler, and incredibly stubborn. My father likes to tell this story about me and a tin of hair pins (there is disagreement as to whether it was hair pins or Q-tips). I think I was about two, and I was playing with a tin of hair pins which I opened and dumped all over the floor. When play time was over, my father told me I needed to pick the pins up and put them back in the tin. I refused. There was a spanking. I picked up one pin and put it in the tin. My father told me I needed to put the rest of the pins back in the tin. I refused. There was a spanking. I picked up one pin and put it in the tin. By my father's account, this happened 8 or 9 times before I was crying, he was crying, and ultimately he gave up. You might say it set a tone.

I've written about my struggles with control and anxiety before. I've shared some of my nightmares that I'm sure are a subconscious release of that anxiety. Last night I wasn't having dreams, though. I was just awake, grieving, for my future. There's this "cheesy" quote I like, because it very much explains my three main mental states: "If you are depressed, you are living in the past. If you are anxious, you are living the future. If you are at peace, you are living in the present." (Lao Tzu) Last night I was living the future. I was so anxious about nothing in particular, that I was lying in bed until after six am this morning without sleep. Not even dozing. I was just awake. Worrying. And actually that's a lie. I know what I was anxious about. It's just really hard to talk about it.

I was sad about the end of things.

I know all things come to an end. I know that one day we will no longer be young and dreaming big. I know that it's impossible to always have Mr Dog by our sides. I know that eventually we will care for  our parents the way they are caring for theirs now. I know that one day I will no longer be able to dye the greys that have taken up residence on my temples and top of my head and are moving in all across my crown. I know I won't always have elasticity in my skin, or a sway in my step.

But like that two year old that didn't want to obey my father, that resisted at every command, I want to refuse this knowledge. I don't want to imagine a time when my parents aren't taking care of me. I don't want to be a grownup! I don't want to think about saying goodbye to my best companion. I don't want to think about life without my husband, or about his life without me, down the road. I know things end. Things have to have an end. I just don't want them to, and sometimes it's so frightening that I don't have any control over it at all. I anticipate all the grief that comes of loving with a depth that is scary and undefinable. I can't put into words for you how much I love my dog. I can't measure the amount of love I carry in my heart for my family. I can't imagine the aching hole that would be left in my heart if my husband weren't there to fill it. Sometimes it just feels like we are all on this train rushing toward the end, and I'm not ready.

Say what you will about John Mayer, but this song has struck a chord with me from the first time I heard it. It's has so much truth and puts into words how I feel in such an exact way, that I often just can't listen to it.

Stop this Train 
No I'm not color blind
I know the world is black and white
Try to keep an open mind but
I just can't sleep on this tonight
Stop this train
I want to get off and go home again
I can't take the speed it's moving in
I know I can't
But honestly won't someone stop this train 
Don't know how else to say it, don't want to see my parents go
One generation's length away
From fighting life out on my own
Stop this train
I want to get off and go home again
I can't take the speed it's moving in
I know I can't
ut honestly won't someone stop this train 
So scared of getting older
I'm only good at being young
So I play the numbers game to find away to say that life has just begun
Had a talk with my old man
Said help me understand
He said turn 68, you'll renegotiate
Don't stop this train
Don't for a minute change the place you're in

Don't think I couldn't ever understand
I tried my hand
John, honestly we'll never stop this train 
See once in a while when it's good
It'll feel like it should
And they're all still around
And you're still safe and sound
And you don't miss a thing
'til you cry when you're driving away in the dark. 
Singing stop this train I want to get off and go home again
I can't take this speed it's moving in
I know I can't
Cause now I see I'll never stop this train

by John Mayer

Tuesday morning, exactly one week later, my mother called to say that an ultrasound had shown a mass on my father's pancreas. Stop this train, I want to get off and go home again.