The Chelsey Diaries

We knew the tumor was back, we knew it didn’t look good for surgery, we knew we didn’t have very many options left. We knew we were right back in the same place as we were before. We knew. But the words coming from the doctor’s mouth on March 9, 2013 still made the bile rise up in my throat the same way it did on October 20, 2011.

Surgery was too invasive

Chemo wasn’t working

and radiation isn’t an option. The frail ground beneath us started to dissolve…

K… so…? Nothing. So fucking nothing. When they are out of options they really are out of options. And then the very worst thing I have ever heard anyone say (until the nurse at Canuck Place, after taking Lilee’s non existent heart beat, said “I am so sorry”) stabbed through my ears and left its permanent mark on my brain. “We are guessing 3-6 months.”

I’ve never had my proverbial time card stamped, so I don’t know what it is like facing your own mortality, but after hearing the expiration date for the most important thing in my world, I would have much rather been counting down the days until my own demise than hearing someone talk about hers.

The story unfolds the way it does, as many of you already know, palliative chemo, hospice, death. And in between those things, life. SO much life. Usually it’s the death bit that lingers in my thoughts (trauma is a bitch), but today is different. Today, the part that sticks is life. Life amid adversity, struggle and pain. Life amid heartbreak and uncertainty. Living inside of each and every moment as it happened because the past didn’t matter and the future was horrifically terrifying. But the present, that’s where love was, that’s where joy was and that’s where my sweet Lilee Baby was. So that’s where I was.

So the thought of life in the present moment caressed my nostalgia, sent pangs of pain in my heart and then, like a smack to the face with a chair it opened up my eyes.

Fear:

Oh, Fear, my old friend. I know you so well. October 2011, we met, for real,  face to face. Naked, vulnerable and intimate. You, fear, were a constant. You joined me during every clinic appointment, blood work result, chemo protocol, brain surgery and MRI. You were the driving force for some of the best decisions I made and some of the absolute worst. You were there, always, steadfast with a grip on my heart.

And then she died and I thought that nothing could scare me again. I’ve been to hell and bought the T-shirt. I faced the scariest thing I could imagine and I was still standing. Barely, shakily, but I stood.

Without knowing it, fear weaseled its way back in, guiding me through the safe zones instead of the less traveled ones, giving me just enough doubt to trick my mind into thinking I was being “practical” and holding me in a life I knew I didn’t fit into. Fear said no to opportunities and kept me gliding along easy street and I didn’t even notice.

The suffocation started again. It’s been a while since I have felt like the world is crumbling down on me. Whether that is the acquisition of new tools or the cartilage growing over the open wounds that stopped it, I don’t know. But I moved through the last little while without the large hands wringing out my lungs. The Ocean feeling, I sometimes call it, was when the ocean beckoned to me to come and breathe in the salty air and give myself to its vastness. But in the last couple of weeks I have found myself with restless dreams, dreams of Lilee standing just out of reach. I’ve been on the brink of giving up and shutting down because I’m just too damn tired. And even though I feel like I am 10 seconds from losing it, its this feeling of desperation that fights the fear, toe to toe. Because, although, fear doesn’t leave when you are struggling to breathe, its is completely out weighed by your desperation to live.

I am suffocating. and I am desperate to live and fear is driving this loser cruiser right into the Mediocre Town.

 

Back to Life, now. I took a year, when Lilee died. Not that I really knew what was going on. Looking back I can see now how foggy it all was. I slept a lot, and then I wouldn’t sleep at all. I would eat a lot and then I wouldn’t eat at all. I thought I was spending tons of time writing, but I was just staring at the screen. Wine was my boyfriend. Family and friends made me anxious, so I tried to limit them too. In between the days I would force myself to do something, was grey. so much grey. And then I left. I don’t regret leaving, but I did leave because the fog was clearing and I couldn’t grasp what life looked like after her yet so I changed my scenery completely. I felt that if I was somewhere else then life wouldn’t be able to catch up. Yep, that’s right. I ran. damn straight I did. I felt it was what I needed and so I did it. I made a choice based on what I thought would be best for me.

Fast forward to 3 and a half years later and I am at the same job, working 9-5, Monday to Friday. I do stuff in the evenings and on the weekends. But I am living that life. The cookie cutter life. And its been fine… until recently. When the suffocation started again I analyzed why I thought it was there. Did I miss Lilee? Yes, every damn day. Did I miss the ocean, yes, every damn day. But, that’s every. damn. day. So whats changed? What now?

Before I found myself in a long term relationship, work was my constant. It was my crutch and my livelihood. It also had potential to be a career and so I pursued it. But in the past year I’ve had personal shifts. I know what I want to do when I grow up, and I sort of know how to get there so I’ve been working towards that, plus my life outside of work shifted from career focused to *grab a barf bag* love focused. Love and happiness, actually. But, with happiness comes guilt, and with love comes grief. In my world, those things are two sides of the same coin and so I emotionally started feeling out of control.

The light bulb was blinding when it finally clicked on.

She died, you died, you moved, you worked. When did you take some time for yourself? When did you find time to learn to breath again?

I didn’t. I haven’t.

I have done things I’ve needed to do, grief wise, absolutely. But I threw myself back into what I’m supposed to do, not what I want to do and now I waste 1/3 of this life   unsatisfied.

I also forgot to give myself time. I do not have the words to describe losing Lilee. I have tried in the past but none of them seem to combine well enough to emulate my pain. So I find myself pushing thoughts of her, of our life and of her cancer journey out of my head, because I’m just not able to deal with it sometimes. But I fear that when I can’t deal with the pain, I am saying I can’t deal with her. And I need to move forward with it so I can bring her with me too.

I wonder, how long we can go without knowing that we aren’t really living at all? I wonder how far we can push ourselves mentally, before we realize that not only is it not worth it in the end, but that we absolutely have the control to change it?

Today, 5 years ago, the choice to give Lilee a life worth living was a choice driven by fear, hope and love. I was afraid she would die and wouldn’t have lived or that she would die because of our efforts toward giving her a longer life. I was hopeful that somehow the palliative chemo would give us more time. and I loved her with every cell in my body and wanted her to live, regardless of how long she had to be alive.

I will not waste this life, because I worked way to damn hard to give her one worth living.

I will not follow society’s standards. My life didn’t get to go the way it should have. The rules of this world failed me and so I am no longer going to follow them.

I will not put my mental health second to anything.

I will never forget that life was the point, that love was the fuel and that Lilee was the vessel to the most important lessons this life will ever teach.

So i’m giving myself some time. Its just a little shift in my work schedule, but it will hopefully allow me to get the help I need, to pursue something I am passionate about, to write and to put more effort into creating a life that allows me to live in each moment. Because my past taught me that it is possible, because my future is full and bright, but I will get there when I get there, and because my present is where love is, its where joy is, and, as it always will be, its where Lilee-Jean is, nestled among the pieces of my haphazardly rebuilt heart.