365

June 15, 2017. It's been a year to the day. An entire year. 365 days since the day the pain was so great that I drove myself to the emergency room and was told I have cancer. That fateful day that has changed my life forever. For better or worse, this happened.  And continues to happen. It has destroyed me, deconstructed me, and rebuilt me into a person that I never could have foreseen. My survival has made me live with more appreciation for every little thing than I have ever thought possible. I've found patience that I've never been able to find before. I pause and regale quietly at the miracles that exist like I never have. I love the people in my life with more fervor and outward expression than I thought I could. I am humbled to a raw version of myself and brought to my knees at the outpouring of support that I receive on a daily basis. And mostly I am thankful. For every moment.  For every adventure.  For every person that I encounter.  Because this is my life.  And as difficult and scary as this has been so far, I know that this life I have is a gift. Every moment is a moment that is mine. Every hug, every smile, everything that my senses take in is in heightened Technicolor. And I can't help but be happy that I am living it. Even as I long for the independence that is just a tiny blip in my memory. Every life has its trials. I can't help but think that though I've gone through more than I thought I could, everything I've endured has prepared me to fight this battle. I see my body degrading every day. The person I was is sloughing away. My hair was falling out everywhere, so I chose to go bald. I'm getting freckles all over my face. My nails break off at the quick. I have lost the body I had built from rock climbing and cycling. The healthiness I see in old pictures is only a memory. And though I'm so much better than I was when I was first diagnosed, I don't know the physical body I see when I look in the mirror. Though my spirit is strong, my body is a mystery. So I choose to concentrate on my spirit. That is something that only gets stronger with time. And no matter what comes in this new year, I am better than I have ever been in my spiritual, emotional, and mental being. I'm going to get my body to catch up. Hopefully sooner than later.

They told me it would take 9 months to a year of chemotherapy to get me to a point that I could live my life again. I never stopped living, but my life isn't what I ever saw it being. This cancer that has consumed my life as I knew it. It hasn't relented, it has been beaten back a bit, but we are at a stalemate.  The chemo I'm currently on is holding it steady. The cancer is what they call "stable". And the powers that be consider it "good". So here I am. One year later with no end in sight.  I asked Dr. El Reyes if there was any way I could work again. Even for a day a week. He said no. He said that with the way I was handling my current chemo, that I couldn't. My profession was too taxing and he thinks it's too much on my body. The side effects from this cocktail range from constant nausea to a loss of normal equilibrium to feral mouth ulcers so bad that I have a difficult time talking or eating. Dr. El Reyes has made it a little less strong at my request and it has helped to slightly lessen all of these side effects, but it makes me wonder if the cancer will grow because of it. There are so many things to worry and stress about that I no longer choose to entertain the extracurricular noise in my head. I have slowly evolved into taking one step at a time. One day at a time, one moment at a time. I have silenced the constant questions, fears, and concerns so I can process the right things properly. I still process the thoughts I need to, but this gives my mind the space it needs to appreciate the good things. To live my life with fervor and love each person that graces my presence with open honesty. To be able to take advantage of the time I feel good and put it to its best use. This is a marathon of undetermined length and difficulty. And I intend to cross that finish line with my hands in the air and a ribbon that breaks away at my waist.

My hair had gotten too thin, and grown in straight. My scalp was very apparent. I couldn't make it look good anymore, so I asked my stylist friends to set me straight. Was it time to let it go? The most difficult part of losing my hair was the decision to shave my head. Being a hairdresser, I was used to being the one to help others in this situation. To tell them it needed to be done, that it would grow back, that it would be ok - it was only hair. I had lost my perspective and couldn't tell myself. I was too close. This thought was so foreign to me that I cried in frustration. Why had I lost my ability to decide? Thank goodness for amazing friends. A moment in the presence of a skilled and reliable stylist can be life altering. And even I felt it that night. Two of my friends confirmed that it was time and only then did I feel myself relax. This was an important step to regaining my identity. The next day I went to my photographer friend's studio to shave my head and document it.  We would video and take pictures. I felt that it was important for people to see this part of it.  Maybe it would help someone somehow. The relief I felt as I was doing it and once it was finished was incredible. It was as if I found my strength again. 

I had an MRI on the Wednesday before I left for Bonnaroo  and had to wait until I came back to hear whether I would be getting surgery, so going was the perfect distraction. It was imperative that I attend this year. It was a goal, a milestone. Going meant that I had lived an unfathomably difficult year and survived. It's a place full of happiness, music, and friends. It's a theater of the ridiculous and a place to let go and find yourself again by getting lost in a free and easy environment. One year ago I spent 4 days in excruciating pain, leaving early on the last day after suffering through my body screaming for reprieve. Three days after that I was admitted into the hospital and told I had cancer. I honestly didn't know how bad it was or what that meant. All I knew was that I was more scared than I've ever been. There were many moments that I thought I wasn't going to make it to now. This past year taught me courage, patience, love, and hope. I discovered a strength that I didn't know I possessed. And I found myself opening my heart up to those who loved me in a way I never knew I could. And sharing it with those who were accepting.

I met with a surgical oncologist that specializes in the liver the day after I got back. He told me then that I would be getting surgery. The MRI came back showing no growth or recession and that means it's the best possible plan to conquer this beast. He actually looked and sounded excited to do this procedure. One year ago it was an absolute no possibility. But now it’s going to happen. They will be removing most of my liver that contains 17 metastases.  Miraculously, the part of my liver that isn't infested is in the middle left section of my liver. The left lobe regenerates, while the right lobe doesn't. Eventually the liver will grow to fill the space left by the removal of the cancer ridden parts. I call the left lobe of the liver "our lizard tail".  After my liver is resected, a colon surgeon will take over and remove the tumor in my colon while I'm still out, possibly in another surgery depending on my next appointment and what he says. Then they are going to embolize the blood flow to the right side of the liver to starve the cancer in the right and redirect it to the left, so it gets what it needs to regenerate. All of this can possibly be done laparoscopically. There are a few ifs along the way to determine success and direction of these procedures. This is going to be a series of surgeries. It’s not often that they do this, but I have faith that it will all happen the way it's supposed to. As I sat in the office letting it all sink in, I felt so much that my emotions canceled each other out. It was as if I couldn’t feel anything. This is going to be the thing that saves me. I was so paralyzed with the good news that I was petrified to believe it. I went completely silent. I couldn’t rejoice, I couldn’t be scared, I didn’t know how to react. It took the rest of the day and into the next morning to really let sink in what was happening. Though this will be incredibly taxing, this is what I’ve been waiting for. I will be recovering for five days in the hospital and four to six weeks at home. This means the chemo I just finished would be the last for at least three months because of surgery prep and recovery. Even though there will be more treatments, scans, and medication after this, I was beginning to see a faint light at the end of this tunnel.

Olympic Chemo on Ice

I began to think about what it all means. As I lost myself in the things going through my head, I came to the realization that I am not my cancer.  Cancer is what I'm dealing with right now, not who I am.  I am my family, my friends. I am the love I feel and the happiness that I embrace. I am the adventures I experience.  I am the simple moments of beauty that carve their way into my soul. I am every appreciative moment that I recognize. I am the goosebumps that prickle over my skin and the tears that roll down my cheeks.  I am every warm hug I encounter. I am the comfort I have in knowing and the peace I feel with it. I am my thoughts, my poetry, my art. My expressions, my laughter.  I am every song that ever touched my heart and rocked my mind. And so much more than this cancer that pervades my life at this point. The cancer will fade into nothing one day and what will be left is all of me. And I’m good with that.

"I ain't happy, I'm feeling glad

I got sunshine in a bag

I'm useless, but not for long

The future is coming on"

~ " Clint Eastwood" Gorillaz

The Desert

We used to get up on Sunday mornings and laugh like crazy. My dad would put on his records and teach me how to dance. I would stand on his feet as he did all of the dances he knew from when he was younger. He's a child of the 50s and 60s. He grew up going to sock hops and dances when people actually danced together, in each others arms.  What an amazing thing to have been a part of. I can't help but think about what we (who didn't have these experiences) missed out on. There was an elegance about flirtation and a pride about being on someone's arm. There was simplicity about happiness that doesn't really exist today. And I still see all of it in my father's eyes, in his actions, and how he treats my mother. It's as if I miss the things that I was never able to experience.

My friend contacted me about an gift she had gotten for me. I was to have an hour long private dance lesson for 2 from Julianne and Derek Hough with tickets to their show afterwards at the Fox theater. Two incredibly talented and beautiful people from Dancing With the Stars. My love for dancing and music started with my dad. So there was no other choice than to have my father join me in this. We were going dancing. When we got to the Fox, we were escorted to a rehearsal space. Within minutes they walked in.  They had smiles on their faces and were warm and welcoming.  After speaking for a few moments, Derek held his hand out to me, smiled, and said, "come with me." For some reason he made me feel like a giggling teenager. He began teaching me a salsa routine. I hadn't had this kind of fun in ages! Over the next 40 minutes we danced and I learned. We then took video of my father with Julianne then Derek with me. As soon as Derek and I finished dancing, I lost my breath and collapsed into a chair. My body was failing me.  It was as if it wanted to remind me of what I had forgotten in the last 40 minutes - I was still sick. I then reluctantly explained to Derek that I've been going through chemotherapy and that's why I was acting this way. I was hoping silently that this wouldn't happen, but I wasn't surprised that it did. He and Julianne were incredibly gracious. They never, for even a moment, acted as if they felt sorry for me. Which I was so grateful for.  They spoke to me with respect, they asked questions and it didn't take long for my father to whip out the chemo costume pictures. To which they laughed and encouraged me. They were amazing. After our hour was up,  they took us to sound check showed us the set, and we said our goodbyes. We went back later to watch their show.  It was really incredible. Dad had the time of his life!

I was enjoying the break from everything I've been going through. It was nice to know that I could go for four weeks without chemo. I vowed to enjoy every moment that was afforded me. And my next stop was the desert.

Joshua Tree

The Desert is a harsh environment. It’s hot, dry, dusty and drains your energy. Temperatures soar during the day and can drop 30 degrees or more at night. It's filled with cacti and harsh plants, incredible animals like road runners, snakes, lizards, and hummingbirds.  Its one thing to hear or read about it, it's a completely different thing to experience it. Andy had brought me out for his birthday to his property in the Yucca Valley, just 40 minutes outside of Palm Springs. I had never been anywhere like it. Andy had taken this wild place and turned it into his own magic landscape. The next 4 days were filled with fun and wonderful people. Old friends and new. All of them kind and considerate. Wild and creative. It was the first time I would see my friend Sarah since her breast cancer diagnosis. As the time got closer that she would arrive, I got more and more anxious. Though we had been talking to each other as we endured our fate, seeing each other was so very different. When we finally did, it was happy. I thought I would have to hold back tears, but it was the exact opposite. It was the best hug ever. I didn't realize how much I needed to see her, to talk with her, and just feel truly understood. We did that for each other and it was so incredible to feel that sort of comfort. Finally. After the party was over, and the place got quiet, I had a couple days to myself. The first day I sat by the pool and talked with whoever was around. The next day I went by myself to Joshua Tree. It was

incredibly alien and beautiful. I lost myself in an unknown, unspoiled terrain to appreciate the gifts that our earth gave us. But it felt like this gift was only for me that day. And I was truly grateful.

I left the next day. So full of love from everyone and everything I'd experienced. I thanked Andy and Chris for taking such care of me. Having amazing friends are indubitably the happiness that fills our hearts. And I am overflowing.

Horseshoe Bend

I flew into Phoenix to visit my brother and nieces. My older niece, Sonya, was graduating high school. I can't explain the pride I have in both these girls. Having never had children of my own, they are the closest thing I've got to it. And I love them dearly. As I sat at Sonya' s graduation with my brother and other niece Vika, I couldn't help but think that this landmark day for her was so significant. Most importantly for her, but to know that I had made it this far to be able to see this happen for her. That I was still alive. I cried with pride for her, love for my family, and happiness for the life I was still living.

The next day my brother and I left for 3 days that he had planned for us. We went to the most beautiful places. Sedona, the Grand Canyon North rim, Horseshoe Bend, White Pocket, Vermilion Cliffs, and a few other spots on the way. It was beautiful. The kind of places that make you feel your mortality. Appreciate the breathtaking earth. And know that all of this was here before you and will be there long after we're gone. It was spectacular. These places made me realize that I am just a visitor here. My life, though important to me, is insignificant to the big picture. There is more in this world to appreciate and admire. The insane uniqueness of this incredible planet has its rhythms, and if you look for it, it will find you as you find it. It all fits into this world, then our world, and finally my world. As small as it is. Perspective teaches us to think broadly. The more I see, experience, and appreciate, the more I know that everything is going to be alright. This time I spend with my family makes me realize how hard it is to lose the life I've known.  So I have fortified my resolve to survive and somehow find a new life after this.

Grand Canyon

When I got home, it was straight back to chemo. It is just as hard as I remember it. But I felt fortified when I got back. Filled full of life and memories.  And strength of spirit to face it all again. The day after, I went in to see Dr. El Reyes and he gave me some possible news. He had met with the tumor board about my case. The tumor board is the place where the brilliant minds that treat cancer at Winship discuss certain cases. After some discussion, they came up with a 70% yes on surgery to remove part of my infested liver along with gamma knife (a type of radiation) to treat the remaining liver. It's also a possibility that they will remove the tumor in my colon at the same time. The remaining lesions in my lungs and spine would be treated with a maintenance chemo. He assured me that my liver was the biggest issue at this point, the treatment after surgery would be easier, and I could take breaks more often. They just need to see an MRI to make a final decision. I only need to wait a few more days to find out. It's so jarring to hear this. On one hand, I'm excited at the prospect of my treatment getting easier after surgery. On the other hand, this is major surgery. Six weeks without chemo to prep my body, then surgery, about five days in hospital recovery, then 4-6 weeks recovery at home. The scars, the drains, the pain. It will be two months of building myself up again. I'm nervous and hopeful at the same time. But I can handle it. I'll do it if it's at all a possibility.

CHEMO. 911!

This has always been me. The strong emotion. The faith I have in people. The love for having fun. The beauty I see in the world.  The strength I rely upon. My core hasn't changed. But how I express myself has. I'm still the same person, but quieter, louder, softer and harder. I appreciate more and I love bigger, cry harder, feel more deeply. And I am perceived so much stranger than I ever have been. It's bizarre to see how people look at me now. It's with a softness. It's beautiful. I can look at someone and feel love and support. I can see that they are all these same things in different incarnations.  We as people are beautiful and caring. Strong and filled with love and life. And so ready to share it with those that will have it.  I am so fortunate to have those in my life that are so incredible. I'm alive with wonder and humility that I have the honor of gazing upon this in people who unselfishly share this part of themselves with me. There's a deep unspoken connection with these people. You all know who you are. Those of you reading. Those of you who take the time to say hello, to give a hug, to wish me well, and help me experience living. You fill my heart every day. I feel the incredible energy you put out there for me. You heal me. You have my gratitude and love. For even in the harshest conditions, there is life and beauty. Just like the desert.

“It’s not about the cards you’re dealt, but how you play the hand”  ~ Randy Pausch, The Last Lecture