Hope

"Hope." It was written on the window of the bathroom from the steam of the shower when I first came home months ago. It has faded, but I attend to it and rewrite it when it almost disappears. It's a physical reminder to lean on that word. It has so much power. But like real hope, it can fade when it's not given reinforcement. Everything we need, we have to nourish. Even when it's hard. Even when we feel like giving up. Sometimes it feels like I'm suffocating under all of the strength that I feel I'm lacking. Sometimes I can break through it, knowing I'll be ok. But we don't really know. Cancer is an unpredictable adversary. Maybe the drugs will work. Maybe my body won't react properly. Maybe I'll get torn apart before I can be healed. Maybe is the hardest word to swallow. Most likely I'll fight this indefinitely. And I'm so tired. It's only been 6 months, but these 6 months have felt like an eternity. Yet still I hope. I persevere. And I keep going. 

Then she saved me. She took me out of my persistently difficult existence and showed me a new kind of hope. I was kidnapped by my beautiful friend Jennifer to the happiest place on earth to celebrate her birthday. We were to explore all of the Disneyworld parks for 4 days. She treated me to a reprieve from my chemotherapy, my biweekly poisonous saviour. Disney even gave me a disability pass so we didn't have to  wait in line. It was truly amazingly happy. Everyone there had a smile on their face. Laughter echoed all around us. It was an energy that couldn't be denied and we fit right in. It was so much different than I remember as a kid, but still so much the same. We laughed continuously and for the time we were there, all of the bad didn't matter so much. It was all about happiness. Even when I was tired and needed to rest before we went on, stopping for a moment and taking it all in was irrevocably magical. It was a simple and wondrous time. I never had a moment that was less than amazing. And I am truly thankful to have her in my life. Not just because of Disney, and not just because she has joined me in all my costumes for chemo, though I love her for these things, but mainly because she hasn't stopped making me laugh since my diagnosis. Even in my most difficult moments, our laughter pushes through my misery. 

Then, in the middle of all this elation, my world collapsed. Before I left Atlanta, my dog Jude had been acting strangely. My parents told me they would take her to the vet. I left thinking she would get some medication and she'd be fine. I had been calling every day to check on Jude. Each time I called, I was assured that she'd be ok. She was just going for another doctor's visit for more testing. Then finally my father reluctantly told me they had discovered a mass in her spleen and she needed surgery to remove it. She had a 50/50 chance of making it through the surgery and they had already begun to operate. She's 11 years old and her age was against her. As I broke down in front of Hollywood Studios, I couldn't help but finally ask why. Why does life hand out so much of the unfair all at once? How could I ever face myself that she's going through so much and I'm not even there to be with her? I had the strength to fight for myself, but to think of  her suffering like this, broke me. I could no longer put on the brave face. I just couldn't imagine my life at this point without her. The ruthlessness of this situation was relentless. I went numb to everything but this sorrow and painful comprehension of this moment. Jennifer was doing what she could to console me, but nothing could. She finally got me back to the condo and calmed me down. I waited by the phone to hear about the surgery. Several hours later I finally got my answers. She was going to be alright. She made it through and was resting comfortably. I felt myself breathe again.  

My loving parents went ahead with the surgery knowing the odds were against her. They told me not to come home, though I tried, and said we couldn't see her until I came back anyway. They downplayed the situation so I would stay where I was. They wanted me to enjoy myself. I learned later that they had to decide to put her down or do the surgery at that moment. Even if she made it through the surgery, the mass might be cancerous. If it was, she had no more than six months to live. Cancer for both of us at the same time? There was nothing right about this. I didn't know the severity of it until I came home. Had I realized it, I couldn't have stayed. We picked her up the day I got home and I slept on the floor next to her for the first few days. It took over a week to find out the mass was benign. She fought her way through and my sweet girl was going to be ok.

She made me stronger through her fight. It was as if she looked me in the eye and gave me courage. If she could defy death, then so could I. If she could be strong, then I could. But it's exhausting being strong all the time. Sometimes all I want is to be held. The pain, the sick feeling, the experience of knowing that your body is breaking down. Then a reprieve just long enough to feel like you can get through it. Your body starts to rebuild itself, then another onslaught that breaks you down. Chemo is like drowning, then coming back to life, then drowning again. With no mercy. It's torture. Human touch helps me feel like I don't have to be strong for just a moment. To be held by a strong set of arms, I would feel safe enough to just let go for a while. A hug from a kind soul gives me strength. An arm around my shoulder gives me encouragement. Laughter distracts me enough to make it through. But then there are the times that I have to face everything and nothing helps. I am trapped inside the prism of this disease. It's a dark place my body goes to. It's difficult. And I suffer. The neuropathy is getting worse. Cold is painful in my feet, legs, hands, lips and mouth. Those areas are also partially numb. I'm scheduled to stop the drug oxaliplatin that creates this side effect or it could become permanent. Recently I was told that there's too much protein in my body. If it continues to escalate, we may need to stop another one of my chemo drugs that's causing it or it'll damage my kidneys. This is disconcerting because I don't know what they're going to replace these drugs with and I wonder if it will work. But I hold onto the moments that make me a fighter. I am tenacious. I do whatever I can to believe that this existence is only temporary, for nothing in this world is forever. 

How beautifully fragile are we. And so indubitably strong. We live our lives as full as we can and when confronted with mortality, we live even fuller. We know how incredible this fleeting life is in theory. Then the time comes when we are faced with the certainty of the inevitable. And we find a way to persist. We find a way to remember, we find a way to celebrate the life we live. We give of ourselves so that the people we care about don't suffer too greatly. We share smiles and memories, we remind each other why and how we live so greatly. We reassure each other that there is aspiration and love. And we thrive with that knowledge. I have lived in the moments of great family and friendship and I am humbled by everything I've been able to witness and be a part of. I am broken by my experience and glued back together by hope. Picking up the pieces as I go and repairing every bit along the way. Though the future is unknown, I will live like every day is a gift. For one day, the gifts will eventually run dry. And we will reminisce about the days gone by and the ethereal existence we had. So today we laugh, and today we embrace the possibility of everything. Because today is all we truly have. We should remind ourselves of this. Then we can see our purpose. We can look honesty in the face and not fear it, but embrace it. And we can know we live life well.

"Where there's hope, there's life. It fills us with fresh courage and makes us strong again." ~Anne Frank