Wednesday, October 26, 2016

Inspiration and Survival

I woke up that morning excited and filled with hope. I was going to MD Anderson. The #1 cancer center in the US. I was sure I'd find the answers I wanted there. I got on that plane with determination and hope for new answers and treatments. Dr. Franco and his team have been taking good care of me in Atlanta, so it wasn't that I'd lost faith in them, but I just wanted to see if there were other options. The entire time on that plane my head was filled with the thoughts and questions I'd  share with the doctor there. Every fiber of my being was consumed with wondering how the plan was going to unfold to conquer this evil living in my body.

I wasn't prepared for what I'd see and feel when I walked into that building. It was bustling. A huge building swarming with people. A lot of patients, a lot of family, a lot of employees. The sheer numbers of people in the massive main building was more than I ever expected to see. All the people I saw in different stages of various cancers, their caregivers, and the people that worked there were there for the same reason. To fight. It scared me and fortified me simultaneously. It truly hit me how many people are affected by this disease. The first thing I saw when I walked in was young girl in a wheelchair who was a double leg amputee. Then another woman in a wheelchair who was bald and very sick. Then more people in various stages of being ill. It was like a punch in the gut. I felt so much empathy it was overwhelming. But the will to live and fight on was like an electric current running throughout the place. I tapped into it, felt it's strength, and walked towards my appointment.

Dr. Fogelman is a colorectal oncologist. He is a kind man and immediately put me at ease with his demeanor. He spoke to me about my condition in an amazing amount of detail. I felt like I really understood what was going on and that there were more options than I thought there were. He told me about more tests that would be done to see if my cancer was susceptible to other treatments. He explained why some would work and others wouldn't. He told me of the success rates of treatments that were available to me and the possibility of clinical trials. He sat with my father and I for as long as we needed to talk to him and explained everything at length in a language that I understood. It was like a breath of fresh air and a serous weight put upon my shoulders at the same time. So much information to take in. It was what I really needed to hear, but it was so serious and heavy. It left me reeling and took a long time to process. After that appointment I knew I had made the right choice in going there. The kindness and gentle handling of my emotions and the information pertaining to me was everything I had been hoping for.

During the three days I was there, I went in for blood tests, a CT scan, saw a nutritionist and a pain control doctor. Everyone I saw was kind, extremely knowledgeable, and shared a lot of information with me. I was all over that building. There were so many people getting treatment. I saw a man with fresh stitches in an uneven criss cross on the entire top of his head walking around and talking to people. I spoke with a woman who was wearing an Eeyore onesie in a wheelchair who had made it two years past what she was given. She wore different ones to each treatment three times a week. I saw people suffering, but they were surviving. They were fighting and they were so brave, so inspirational. And we were strong together.

After all of my appointments, I went back into to see Dr. Fogelman. He walked in and said, "I have good news!" Those words made my heart stop. He explained that my treatment was still working well and that my cancer had stopped growing. He showed me my scan results for the first time. I saw what my cancer looked like and the diminishing spots on my colon, liver, lungs, and spine. He said the spot on my spine was "scabbing over". I saw the initial scan compared to my most recent. I saw the fluid that was in my lungs four months ago was gone and how much smaller the spots were. He explained and showed me in my scans what a growing cancer looked liked in comparison to a cancer that wasn't. He also explained how well I was doing with my current course of treatment and said that I was on the right track. Confirming Dr. Franco's prognosis. Eventually the chemo I am on would stop working and we'd have to switch. This would be how we will continue to fight.  He also explained that complete remission for a cancer like mine was very rare so he didn't see that for me, but eventually I would get to a place where I could ride my bike and rock climb again with continued treatment. So much good news. Yet I'm still hung up on the fact that I have to continue chemotherapy indefinitely. It's so difficult. But I will keep on fighting. I'll keep hoping for new medications and clinical trials. A cure for me might be rare, but it could happen. And I'll hold onto that.

Houston. It seems funny that this city could hold information for my future. I always thought that it would be somewhere exotic and seductive like Paris or Florence. Or somewhere fun and weird like Key West. Yet there I was in Houston. Hearing news that I didn't want to hear and praying like I never thought I'd pray. It seems like such a strange existence I have now. Always waiting for the next test result hoping there will be drug that can cure me. But there is no cure as of yet. There is just the hope that we can continue to maintain the balance of drugs that won't destroy me while keeping the cancer at bay. This is my life now. I never thought it would be like this. "How could this happen?" often crosses my mind. I guess it doesn't really matter. Now it's about having the courage to keep fighting despite the toll on my psyche and my body.



I have choices. We all do. I can live each day like it's my last or I can die before I'm dead. Life is too amazing and I'm not going to let it go. Living each day like it is precious is my choice. And I'm going to appreciate each and every moment. I'm going to be brave and I'm going to fight. Because everything in my life is worth fighting for. My incredible family, my beautiful friends, and the entire world I've created for myself. These things will heal me. These things will give me the strength and bravery needed to conquer the unconquerable. I will be a survivor. 




“We shall draw from the heart of suffering itself the means of inspiration and survival.” – Winston Churchill

Tuesday, October 11, 2016

Lost and Found

Life is beautiful and precious. Something we often take for granted. We forget to slow down. Our thoughts go a million miles per hour. We wonder what and why. Which direction are we bound for? Then suddenly there is no direction, we must stand still for just a moment. And then it all stands still.  Every plan that's been made is no longer relevant. For all that exists is now and survival. That's what cancer makes you do.

I've lost my carefully cultivated and nurtured career. Being a hairdresser, a friend, a welcome ear, an artist.  The people I work on and with are now out of my every day life. I can no longer live in my home on my own. Even the man who claimed to love me left my side soon after my first chemotherapy. Though I don't blame him. It was all just too much for us. Every day is difficult. Every moment is a fight. I guess this is what it means to be brave. To face it all and stand. And still have hope and still believe in love.

And it's brave to care about me. I may make you feel  things you didn't ever want to feel. And that can be scary. So I appreciate all the love, care, and encouragement I receive. It's overwhelming and amazing. And I understand if the people in my life need distance. It can all be too serious at times.

There is another kind of bravery. From the day I was diagnosed I've had oncology nurses by my side. Their bravery is defined by the care they give. The night I was admitted when I was first told I had cancer, I cried out in pain and fear and it was a nurse who sat by my side, held my hand and listened to me while I shook and tried to comprehend my diagnosis.

In my almost 3 weeks in the hospital after my initial diagnosis, they laughed with me, cared for me, gave me my meds, made me feel like I mattered. I wasn't just a number. They visited with me and went far above and beyond what I thought was necessary. When I was broken and lost, they gave me hope. They checked on me even when I wasn't part of their rounds. Just because they cared.

Every time I go into the infusion center for my chemo, they greet me like an old friend. When the nausea and pain was too much, they held my hand and stroked my hair until the meds came and took effect.

A nurse is an unsung hero. Who never really gets the accolades they deserve. But they are always in my heart. Always by my side.  And they never give in or give up. They are some of the most amazing people I've ever had the honor of being around. And I'm full of gratitude for every moment I have with them. They make me feel this way and make all of the others they treat feel this way. Somehow. They make sure we know that we all matter. Despite the drain on themselves. What an incredible ability. People of this ilk enhance the beauty in this world and make you remember that no matter what, it's all going to be ok. Even if it isn't.

Being brave doesn't mean you're not scared. In fact, it really means facing your fear and being strong anyway. This paves the way for the gifts we receive. Life has a way of giving us things we never would have thought were gifts. I have many. The people I know and have had the pleasure to share time and space with, make me see the humanity and virtue in being. It chips away at any cynicism that might come along. It makes me believe. Who would've thought that having a curse like cancer would give me the untold gifts I've gotten. The love, the strength, the courage, and my perception. Cancer creates heartache and loss.  Loss of career, life, love. It breaks you down to your bare minimum of living. I've lost a lot. But gained so much more. It's about being brave. However that's defined.





"...People may forget what we said, people may forget what we did, but they never forget how we made them feel. Kindness is courage. Compassion is strength."  ~Paul Coelho