Saturday, March 24, 2012

Finding Hope in Chapters

Sometimes life feels surreal. I'll be walking, feeling the sunshine on my face and in that moment of happiness it's like someone runs up and punches me in the stomach. You know that feeling when you get the wind knocked out of you?? Sometimes it's just a little jab to my gut, other times it's like Jon died all over again and all I can do is try to take deep breaths. Those moments come on all of a sudden, usually without trigger or warning. I wonder if it will always be this way.

I have happy moments. I find them in small things, and I cherish them. I cherish the people around me who bring on those happy moments. But I feel everything so much. I guess I've always been that way. Cry hard, love hard.

Several months into our relationship, I started writing our story down. Jonathan loved to read the new chapters, even though some parts were difficult. My hope is to one day finish the story... although the ending is not what either of us had imagined. A lot of it has already been said one way or another in my blogs, but to have it all in its entirety would be a real accomplishment for me. For now, here is an excerpt from Chapters 10 & 11:

"When I thought about our future together, cancer never factored into my plans. Let me explain. I knew there was of course a possibility that his cancer could somehow alter our future in some way. I had accepted that it would be a part of our relationship -- a large part. And although I had moments where the fear crept into my mind, I never really believed it would change us. I refused to give it that power. I thought of the Nightmare on Elmstreet movies and how if the teenagers stopped believing in Freddy Kreuger, that would take away his energy and he would no longer be able to hurt them. I knew cancer's immense strength, it's sneaky tricks, its ability to ruin lives... but I refused to believe in its power over my Jonathan and our life together. I turned my back on it. I refused to capitalize it in a sentence. My focus was entirely on beating it. I never for a second doubted our relationship's strength... i knew we could face anything together. We had faced difficult times already and I was not naive enough to think we'd seen the last of those hard times. But it never worried me. I worried about Jonathan..about what he might go through, but I never questioned the outcome, or feared for his life or the durability of our partnership.

What I constantly feared was Jonathan's own belief. His positive attitude remained one of the most admirable things about him, but I feared that deep down he might somehow allow the negative thoughts to seep in. I was afraid that all that he'd been through, in addition to the poor scan results and long road ahead might break him down. I was terrified that he would tell me he believed he would beat this thing but that he'd really be seeing question marks. It had taken me a long time to get him to plan things further than 1 week in advance... and he had started to see a future for himself. I didnt want anything to take that away from him. In my mind, if he questioned, even for a second, it would give power to this disease. I never asked for him to say he'd live forever, but I fought hard to make sure he never saw a time limit. We both were unsure of what the future would hold as most people were, but when he said forever, I wanted him to think...know...that his forever could be and would be just as long as anyone else's.

His feelings for me were always clear when I looked into his eyes. It just took him a little longer than it took me to give into them, and for him to believe that I felt the same. I fought hard to break down the walls he had worked so diligently to put up. It's what I do.

The first time he told me he loved me, we were laying in bed in my apartment. We had just shut the light and television and were getting into spooning position when he traced three words with his fingers on my back. Taken by surprise, it took me a few tries to figure out what he was writing. Probably not how he expected it to go. But I will never forget that moment when I realized what he was saying. It was like everything I ever wanted was handed to me in a matter of ten seconds. He loved me. What more could I possibly ask for?"

Saturday, March 17, 2012

Chocolate & Vanilla

The following is an email from Jonathan from about a year ago. It pretty much sums us up. :) I don't think I ever truly realized how lucky I was. <3


I need to tell you that there are a few things I'm sure of, and these are things that DO NOT CHANGE. EVER.
The first and most obvious is that I love you. When I say that, it means everything I can possible conceive it to mean. You are a part of me; a part of me that I cherish and want to take care of, to nourish, flourish, and protect like nothing else. You are my other half (my chocolate half, and I'm obviously your vanilla). You can be caramel if you want, but either way you are the other half of me, what I don't have, what I'm not, and the part that I need if I ever want to add up to a whole. And that's the point. Of everything, I think. Because if you go through life always just being a half, then you never know the joy of experiencing wonderful things alongside that person who makes everything that much better.

When good things happen, I need you next to me to share them with me. When bad things happen, like allll the time, you are the rock I need to keep me going. I hope I can be that for you, too, and I'm sorry that most of the time I'm the reason either of us needs a rock at all.

I want to make you happy. You make me happy every day just because I know I have you. I fall asleep next to you thinking how lucky I am, because how many people in the world get to fall asleep in such a perfect place, such an escape from the world, next to the person they are so utterly in love with? Even though the next words you say to me might be "get away," or "too hot," or "no snuggles," I'd rather feel your warmth nearby than anything else. I hate waking up on days you have to leave and realizing you're already gone, not coming back, and I have to lay in our bed all by myself without snuggles. I'm so excited for the idea of sharing a bed for the next 2000 years.

I love thinking about you being my best friend. Being in the trenches with's a figure of speech, but we really are "in the trenches" together more than most couples could ever fathom. But I don't see it as a bad thing. I don't see it as being "stuck," and I really hope you don't either. I still consider myself incredibly lucky because if I HAVE to do it, I GET to do it with you. My love for you is unquestionable. It is also unconditional. I will try to show it to you more, because you not knowing it is inexcusable.

You are my angel. I intend to hold onto you. Even if you yell at me. I yell sometimes too. It means we care.

I care a lot ;)

I love you so much Spaceyface.

Tuesday, March 6, 2012

Don't Let the Days Go By

Everyone knows Jon and I connected very quickly. The first few months of our relationship are documented in some pretty intense emails, that continued even when we started spending all of our time together. It seems to me as I reread them now, that we joined forces immediately and went to battle. We battled the memories and trauma of all Jon had already been through. We fought the statistics and the threat of all that might be taken away. We worked hard, through our words, (and actions) to convince one another (and ourselves) that things would be okay, and that no matter what, we had each other.

Jon was so worried about me in the beginning, knowing what I was potentially getting myself into. And in these emails where I would attempt to convey how much I wanted to be there, the clarity I had was unbelievable. I was absolutely sure that I wanted to be with Jon, and that meant no matter what the circumstances. The messages we sent to one another are powerful, quote-worthy, and expressive in a way that only truth can be.

We both believed that Jon had seen some of the worst aspects of life -- all the pain and ugliness that can exist in life, but that our love displayed the best of what this world had to offer. In one of the emails, I was upset as I had just seen a young patient die and vividly remembered his girlfriend sitting on the floor, crying. It obviously hit very close to home even though the situation was very different. Jon swore to me that that would never be us. He said our story would always be amazing. And although at the time he was doing his best to promise the un-promisable, in a way he was right. Our story will ALWAYS be amazing. It will always be a part of me. I love and hate that at the same time.

On my way home from work today, I felt like all the strength people have been telling me I have got sucked out... in one swift movement, as quickly as a sad melody can make your heart ache, I fell apart. With every step I took toward my apartment, the anger and frustration seemed to get bigger and bigger. No matter how aware of reality I am, and no matter how hard I try, I can never shake the feeling that Jon might be here waiting for me when I get home from work. It's usually just a split second as I turn my key in the door, that I imagine I might see him sitting on the couch ordering dinner for us.

Tonight, I couldn't take that feeling. I came inside, grabbed one of Jon's favorite sweatshirts, and went to the park. Jon always found crying to be cathartic. I sat on a rock, put on a playlist we had made entitled FML, (which we'd created during one particularly awful chemo regimen), and basically, lost it. I cried for everything we did, all the things that I miss with every beat of my heart, and everything we'll never get to do. As I wiped my tears on the sleeve of Jon's sweatshirt, I thought of just how many tears this particular sweatshirt had seen in the course of the last two years. I could remember the feeling vividly, that instantaneous relief I'd feel when he pulled me close to him and wiped my tears. And then we'd laugh about all the snot on his sweatshirt. Without him here, the tears just seemed endless. As I sat there, feeling sorry for myself, a puppy ran over unexpectedly and licked my face. I couldn't help but laugh. It seemed to be Jon's way of telling me, "Ok, enough being sad. Get back to your life."

I think going back to work has been more difficult for me then I'd realized. Not in the way people expect it to be hard. It's not because I'm reminded of Jon or associate him in any way with my patients, or even cancer in general. It's much more internal than that. I want to give my patients and their families hope. The hope I think I instilled in them before -- the hope that truly was my religion the last two years. And I still do have hope. I'm still trying to hold onto the girl I've always been -- the girl who believed in fairy dust and dreams. I know it's something Jon loved about me, and in truth, I think it's what makes me the person I am. I still believe in miracles . . . it's just that a little more reality has been mixed in.

It just frustrates me how changed I am from this experience. I feel like my sparkle faded, or something equally as dramatic-sounding. I want to shine again. And there are times when I think I do. I am lucky enough to have people in my life who bring that out in me. I'll catch myself mid-laugh, or when I'm smiling until my cheeks hurt, or getting an unexpected kiss from a puppy. And those moments are what keep me believing. I'm not broken, just a little bruised. And I'll be damned if I let myself become something dull and faded. I just have to keep surrounding myself with people who can see me. . . people who see me like Jon did . . . people who still think I'm sparkly despite being a mess sometimes.

I believe -- I have to believe -- there are so many more beautiful, sparkling moments that lie ahead.