Resolve

I'm tired. Tired of this existence. Tired of being sick. Tired of being a prisoner inside this illness. Tired of not owning anything in my life. Tired of not being trusted to know what's good for me. Tired of being alone in a sea of people. Tired of the frustration. Tired of not knowing. Tired of my chemotherapy induced short term memory loss. Tired of this marathon of a sickness. I'm tired. And I'm terrified that this will never end. 

One of the things that defines us as individuals is the ability to make decisions for ourselves. Our autonomy.  I no longer have that. I try to grab bits and pieces of it, and occasionally touch it, but it slips through my fingers like water. I love my family. I don't know what I'd do without them. They've been there for me through everything. But it's a weight on all of our shoulders as I try to navigate my way through this. I know my parents' love is incredibly immense. I know if the rules were reversed, I would do everything I could to help them, but they're not. And this is something they should never have to see. There's nothing I can do to shield them from this stress. This constant worry and concern about how I'm doing. How do I do this? How can I possibly remove this trauma from our lives? How do I stop the psychological torment that follows us around like a whimpering puppy? 

I wish I could say that through this I've been graceful and perfectly poised, but I'm not sure how that could be possible for anyone with cancer or going through intensive chemotherapy. I'm not even close to being the person I want to be. It gets to me too. I get grumpy and sad. I get exasperated and worn out. Though I try to keep myself together, this thing has made me lose my composure more than once. My family's constant worry about how I am crushes me at times. They shouldn't have to worry about anything but their next trip, or Mom's garden, or Dad's impending photo book. But here I am. The elephant in the room. Difficult to maneuver, even more difficult to coexist with. I become the thing to fuss about, to be concerned with, to become obsessed with. So I do my best to spread myself thin. I spend time with friends, I travel. I retreat whenever I can. When I have good days. 

It's hard to be the girl with cancer. There's a responsibility to fill in anyone who I talk to about my health status, to reassure them that I'm doing ok. But what is ok anymore? I'm surviving. What I wouldn't give to not make it the forefront of everything. It feels like cancer is my full time job. I'm not even sure how to talk about anything other than what I'm going through anymore. To not worry about this ridiculous situation I find myself in. To be silly again without a purpose behind it. Just for the sake of being fun. I wish I could turn off my brain. The constant voice inside my head that goes a million miles per hour in every possible direction. I would give anything for the simplicity of thought that good health allows. I've been trying to make plans for the day that I get the word to return to life as I knew it. But life as I knew it doesn't exist anymore. It would be impossible to go back there. The only way to move forward is to find a new life. And how do I do that? How do I find a way to survive after this? I loved my life before this all started. I'll be starting from scratch. With nothing but my ideas and hope. But that is the seed we all started with long ago. I had gotten so comfortable in my world that I forgot that's all that any of us have in the beginning. It's what we come from. It's the base of our strength. The foundation of who we become. And as difficult as it is to go back there, it will be my salvation. My inspiration, and my light. 

I often talk to other patients when I go in for my treatment. Dressing in costume with Jennifer has been a spark of humor for everyone in there. The patients, the nurses, the doctors and the receptionists. Somehow this ridiculous behavior has become normal for people in my infusion center to see. The other patients take pictures of us and remember to laugh. Maybe we make this a little easier for them, even for a moment. I'd like to think that it creates a unity within our suffering, that our combined energies embolden each other. Every day is a struggle for cancer patients. Every day we fight to regain normalcy. In our lives, in our family's lives, and our friend's lives. It's a constant thought. Our conversation, our acknowledgement of each other, and our smiles speak of a profound understanding of what we go through together. It's like a secret handshake when our eyes meet. That we know just by being together. That we can converse without any apology or sorrow and encourage our recovery with a simple look.

I've seen beauty within this pain. There are times in the infusion center that inspire me to look and be warmed from head to toe. There is an older couple. She's lost her hair and she suffers through her treatment. She sleeps a lot. Her husband is always by her side. I watched him feed her her lunch at my last chemo session.  An example of an undying devotion and a timeless love. As difficult as it is, they love each other with respect and open eyed faith in each other. I've seen parents stand by their child's side, wide eyed with concern and a subtle, almost hidden current of worry while watching the difficult process they wish they could take away. I've watched patients stand their ground with pride and strength during this process, even if all alone. I've watched pain and suffering fill a room, but the love of life rise above it. I've seen the kind of bravery that would break you at first glance, but inspire you if you gaze long enough. It's almost more than I can take at times, but makes me embrace my pride of being human and what we are capable of. 

Then all of a sudden I realized that it's ok. 

Ok to cry and be upset.  

Ok to question everything. 

Ok to be joyful. 

Ok to dream of a cure. 

Ok to think that this might not be a happy ending. 

I'm going to feel and think and do all of it. I now know that I can without it crippling me. I've been confined by my thoughts. Restricted by worry of how I should be. I feel a bit more free allowing myself to think openly. Though it's not the ending that I'm concerned with. It's the now. The ending isn't going to be easy. No matter when. It's the beginning and the middle that makes it all worth it. The part that makes your eyes prickle with tears. That makes your heart swell. That makes your blood rush and the giggles rise. The part that makes your palms sweat in anticipation. It's about the shivers up your spine right before the goose bumps. And the warmth of happiness spread throughout your body. And don't forget the butterflies in your stomach. I love the butterflies. That's what it's all about. 

"Do a loony-goony dance 'cross the kitchen floor,

Put something silly in the world that ain't been there before."

~Shel Silverstein

A New Year

I'm at a strange place in my life. I have moments of true clarity. Of all the possibilities. It's beautiful and horrifying at the same time. I feel like I'm just around the corner from having my life back, then I have an episode and I have to rest. I'm feeling pain in my abdomen again. I don't know whether to be worried or just chalk it up to my condition. It's all part of the process I guess. A harsh reminder of what my true situation is. I dream of the day when I don't have to be careful or worry about how much time I have before I need to take a break. When I can play like I used to. When I can exercise for more than 10 minutes before I get winded. When I can have a cocktail with a friend and laugh about some ridiculous thing that happened to me or them. Because it always happens! And when I can look in the mirror and see a fit body instead of the skinny girl looking back at me. Though I can't help but think that I should get everything in order. I know what to do to get my life back together after it all fell apart, but if it stays apart, I know that there are things I must do to make sure that all is as easy as it can be. It's difficult to talk about, and I have the kind of fighting spirit that will last as long as I will. But sometimes I think about the what if. 

There was a woman in my life years ago. She made a lasting impression on me. We spoke about life and her fight. We would talk about her disease. She had lung cancer. She would come to me and we would talk and she found comfort in getting her hair done. She had the most beautiful spirit. There were many times that she was sick and asked if I would fit her in to cut her hair or sometimes just style it for her. She would come to me after her stays in the hospital. She told me that she would give anything to not have to deal with what she was going through. I was with her for a long time on her journey. Sometimes I would just sit with her and talk. I would purposely set aside extra time for her just for that. One day she asked if I would come to the house to give her a haircut. When I arrived she was in bed. She was surrounded by her family.  Her eyes fluttered open, she gazed in my direction, and she smiled. I'll never forget what she said to me. "Isn't this a sad state of affairs?" The next hour we talked as I cut and styled her hair. She smiled at me when I was done. She hugged me tight and kissed my cheek. Then turned and walked away. We both knew it would be the last time we saw each other. She died 2 days later. Her funeral was one of the most difficult things I've ever done. I think of Stephanie often these days. She never really left my thoughts over the last 10 years she's been gone. She was a fighter. And she was beautiful. I can remember her as clearly as if I had just seen her yesterday. Now I know more about her fight than I ever wanted to know. And I feel her spirit when I am weak. 

It's difficult at times to remember to be optimistic. The constant scans, the regular infestation of life saving drugs, the persistent feeling of illness. Sometimes I have to fight to remember what it was like to be the woman I was before this. I was happy with my life. Thankful for everything. Life wasn't perfect, but it was still incredible. I loved it.  Now all I wish for is to be back there. I have dreams of what my life was. I dream of what it will be again. If I only stay strong enough to get through this. But I falter. I'm going on seven months of this and I am weak. I miss the life I built for myself. This break from the harshest drug in my regimen only stands to remind me of what is out of reach right now. I am feeling better, only to get strong enough to take another set of rounds of new medication with more difficult side effects. I have another six weeks to enjoy this break. I feel like doing something ridiculous. Something that will make me feel like my life is normal. It's funny how I find that doing something unconventional will make me happy. But that is how I enjoy my life. Challenge myself to find the next set of gut busting laughter. It fuels me through everything. It combats the bad with an equal but opposite extreme of emotion. It somehow gets me through. 

Going to the beach to celebrate with friends for the week of New Year's Eve was a great decision. I didn't realize until then how difficult this whole thing has been on me emotionally. How bad I had felt. It's funny what you can get used to. As I looked towards the ocean, I felt the salt air surround me and start to work it's magic. I breathed in slowly and felt my soul relax. The gentle sound of waves lapping against the sand seemed to instantly calm my being. My eyes drank in the blue sky and bluer water, and a slow smile spread across my face. I felt like I'd come home. This was my first time in Melbourne Beach, but there was a pull there. I feel it every time I go anywhere near the water. The atmosphere was intoxicating. Being with some of my dearest friends to celebrate the new year was cleansing. It was a much needed break from my constant chemotherapy. We went out every day. And every day they made sure I was ok. I slept on the beach. If I wasn't well, we went back to the house so I could rest. When I ran out of energy, the plans changed so I could recharge. Though they made sure I never felt like I was a burden. I'm a lucky woman to have friends like this. I don't even know how to show my immense gratitude. This meant more to me than I can ever convey. And my heart is full. 

Candis, Marti, Lucy, Angel, & me.

There's something about losing yourself in laughter that's magical. We laughed for days. We sat by the fire and talked about normal things and were happy. We went to the beach all day and lit fireworks on New Year's Eve. We watched as they lit up the length of the beach as far as the eye could see by people celebrating life. We reminisced about the good times that were had and good times to come. And we didn't talk about cancer. It was everything I needed. 

Where would we be without our friends? The ones who are there for you, that believe when you don't always have the strength to. The ones who remind you to laugh when all you want to do is cry, the ones that time or distance has no effect on your relationship, the ones who are your chosen family. The ones you share your strength with, that you love so much it permeates your soul. The ones you don't ever want to think could ever leave each others side.  

As I look back on the past year I can't help but feel sorrow and loss. As I look forward I feel hope and triumph. Everything I've experienced has invoked awe. The definition of awe is "a feeling of reverential respect mixed with fear or wonder." This is exactly a true representation of my emotional existence from the day of my diagnosis to present. I have a reverential respect for the mystical actuality that is my life as I know it. There is fear that I won't actually succeed in conquering the hostile illness inside my body. There is an encompassing wonder that I actually survived the last 7 months with what my body and mind has been through. I have experienced something that I wouldn't wish on anyone. It has been torture, but also an enlightening of my spirit. Somehow, through all of the pain, fear, sorrow, and despair, I found beauty. I found my hope. I found my strength. I learned that no matter how dark things seem, there is always something to believe in. And even if the result isn't what you wanted or expected or hoped for, there is purpose. I've learned to slow down. To appreciate the simple moments. I will most likely never find a reason why this happened, but I know that I've found a new way to appreciate life. I found patience. If you wait, sometimes dreams do come true. Even if you didn't know that was what your dream was. If you observe, you'll see the incredible spirit that resides in the love of your family and friends. And sometimes in the smile of a stranger. I've embodied humility and love from the humanity that lives within the people surrounding me and I've grown to find my strength within it. I have found so much gratitude in that. It's a new year, a new time for new ideas and new action. A new era for a year of new life. And I am going to live it. No matter how long my life is beyond this, I am full. Full with hope, full of love, full of life. An eternity's supply.

Rich, Marti, Lucy, Angel, Candis, & me on NYE.


 "Life is mostly froth and bubble, but two things stand like stone: friendship in another's trials and courage in your own." ~ Princess Diana