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

Cognition

It finally hit me today that it's really working. After 6 long months. All of the pain, the nausea, the struggle, and the heartache is finally paying off. I understand that as a realist, I wouldn't allow myself to think any further than where I was at the moment. I couldn't speculate on the possibility of actually succeeding because if I allowed myself that and it wasn't true, than I would be a failure. I couldn't take that thought. It would completely destroy me. All I could do was keep trudging through my own private hell. And put on the brave face. And laugh. Because laughter has saved me. When I wanted to give up, I just found something to laugh at and someone to laugh with. I shared it with whoever would join me. I found something to believe in. And that was the people that were enduring their own version of hell at the infusion center with me. If I could make them laugh, or even smile for a moment, then my struggle wasn't so bad. I believed in them and they gave me strength. And then I felt like this life of mine had some purpose. That maybe there really was a way to make this pile of manure into a bed of roses.

My last chemo was beautiful. It was fun and happy. Going into chemo is tough. My body knows. Each time I go in my heart rate goes up so high that I have to take blood pressure medication. Every other day my blood pressure is normal to low. I can't psyche my body out, but I can make my attitude positive and I can make it through. I gave small presents to the other patients. There was laughter and lots of smiles.  People kept coming up to me and thanking me for bringing joy to everyone. And my heart swelled. My smile was huge that day. Knowing we could share this experience and know it's horrible but could still enjoy ourselves. I can't help but think that what I'm going through is helping me find something greater. That this agony will somehow show me it has a purpose. I'm 6 months in. I knew it would be 9-12 months of chemo before I could have some semblance of a normal life again. I'm halfway through. And I see a glimmer of light at the end of this dark and treacherous tunnel. I'm so much stronger than I was. So much more hopeful. And so adamant that this is just a phase in my life. It's really strange to lose that amount of time. But I'm curious to learn what I'll find after it. 

I recognize that my approach is a bit nontraditional. But reality is really tough.  Focusing on the pain or the medical, sterile truth all the time is incredibly stressful. So I choose to focus on the fun parts of life. The parts that matter.  Like being silly and dowsing people in joy. Living in positive energy and encouraging happiness. Because there's nothing happy about a stage 4 diagnosis, or constant pain and nausea, or the thought that this fight isn't just about not feeling good, but really about not losing your life. I know more than I ever wanted to know about what it takes to survive. Now that I have that information, I'm going to use it. I'm going to share it and I'm going to live bigger than I ever thought I could and more grand than I ever thought to dream. Because if I can go into chemo wearing a costume and make people laugh and abandon their misery for one moment while battling the hardest fight of their life, I can do anything I set my mind to. Our minds are boundless. We can conjur our success or our failure. And for the first time in this cancer ridden body, I believe wholeheartedly that I will beat this thing. 

I've been so cautious to think it. So careful so that if I got bad news that I would hold it together. I've just gotten so used to the bad news. Now I'm getting news about the next step. Now we're looking at what happens when my lungs are clear. It hit me when I asked my doctor's nurse if it would be ok to take a break from my chemo for New Year's eve. The look on my nurses face was one of certainty that it wouldn't hurt anything to have this time for myself. After enduring 12 rounds of this torture, she said it would be ok. It wouldn't set me back. It wouldn't automatically come back and flare up. She said if my next scan was good, if my lungs were clear and if my tumor markers were at the right place, we would need me off of chemo to prep me for radialablasion. Oh the importance of the ifs. Dr. Franco had already mentioned this procedure, but it's best for me to focus on what's at hand instead what could happen. He had told me that this would "blast it out of the liver". I smiled and thanked her. As I walked out of the infusion center, I felt the tears well up and begin to stream down my face. And for the first time, they were happy tears. Tears of incredulity that I had come this far and realization that this was really happening, that I could possibly have this heinous cancer receded out of my spine, lungs, AND liver. This next scan was so crucial. The next 5 days until then felt like a year away. But I was patient. I'd come this far and wasn't going to lose my faith. So I waited on bated breath until then. 

As I walked into MD Anderson again, I had to fight to control the tears that filled my eyes and threatened to spill over. I took deep breaths and clenched my fists. I walked deliberately and concentrated on each step I took and tried not to think about the fact that I was there to understand and treat a cancer that stopped my life in its tracks like a bad car accident. Somehow flying to Houston made it feel so much bigger and more serious. I focused on the escalator, on the sterile decor, on the signs that were scattered along the walls, anything but the people that were here with me doing the same thing I was. But I couldn't help but glance at them. The familiar looks of intrepidation and uncertainty on people that were new to this, along with the grizzled expressions of determination on those who had been battling this for a while. Then there was me. I was somewhere in the middle. Still cautious and vulnerable, but stoic and assiduous in my purpose. I've gotten used to the medical aspect of this. The scans, the IVs, the drawing of my blood, drink this, don't eat for that, take this, avoid that, "this might hurt a bit", etc, etc, etc. That's the part I can get used to. It's the people I see. Their suffering and fear I understand completely. The sheer numbers of people that are going through this is staggering. And I feel for them. It can be overwhelming to be conscious of my emotion along with theirs. And strangely, as much as it's enormously difficult, it's comforting. The gambit of emotions that I go through on these visits to Houston are unyielding and I have a hard time processing them. Though I'm thankful for having the opportunity to go to MD Anderson. I feel a confusing amount of craziness while I'm there, but an odd sense of peace when I leave. 

I finally got to the examination room and waited. Dr. Fogelman entered and gave me a hug. He was warm and smiled. He has a great sense of humor. He gave me comfort. I haven't felt that before with any other doctor in my abundant history with doctors. It gave  me a sense of family. He showed me my scans and told me of the good news that everything was still shrinking. I asked about the radialablasion. He said it's still too widespread since it was still in my lungs and there are too many spots on my liver to attempt it. I felt my hopes crash to the cold, hard floor. This was why I hadn't let my thoughts get too ahead of myself before. All of my excitement of my last visit in Atlanta was gone in that moment. I picked up the mess of what was once my dream of clear lungs and liver and placed it carefully into the back of my mind for later. There will come a time where it will eventually come in handy.

He went into the good information that I chose to focus on. My CEA results, otherwise known as my tumor markers, is a blood test that shows my progress. My results at my diagnosis in June was up in the middle 400s. That day, it had gone down to 9.5. The actual tumor in my colon had gone from 5.5 cm to 1.6 cm. The multiple spots in my lungs had shrunk about 30% from my previous scan. Though it wasn't the clear lung result I was hoping for, it was incredible progress and still great news. He also told me that it would be bad to take a break at this juncture. It could set me back. I had the resolution of my ifs. I would not get my break. I took that news seriously and steeled myself to continue. 

The skin on my fingertips and toes is peeling off. I have sores in my mouth, my nose, and sinuses. Half of my hair has fallen out. At some point I could lose it all.  I'm getting nosebleeds. Half of my hands, feet, and face are numb and painful. My eyes, teeth, and gums hurt. The headaches are irritating and the fatigue is constant. This is the part that gets really hard. I want so badly to say that I don't have a problem with doing more of this, but I wish I could take a break. This chemo is tearing my body apart and me along with it. I often wonder how much more I can endure. I completely lose my focus on being strong when my body is breaking down. Strangely, all I want is to be held when it gets bad, and I'm slowly realizing that it's going to get worse before it gets better. Yes, I have good days. I've got the "good face forward" thing down pat. A smile is better to share than anything I could possibly be feeling or going through. My bad days are really, really brutal. It's no longer just the sick feeling. It's plain painful. We're stopping oxaliplatin, the drug that's causing these side effects for 4 rounds. Then back to it. It's like a fine ballet. The dance of cancer. Break you down, build you up, break you down again and again. Just when you think it's the worst it's going to be, you get to experience it even more heinous. If I looked the way I feel, I'd  look like Gollum. 

We forget that feeling normal is good. It's not until you feel bad 90% of the time that you realize how good normal is. How wonderfully magical it feels to just be treated like nothing is wrong. To not have to think every second about having cancer. I can't wait until the day that it's not the first/only topic of conversation. That this is just a memory and normal is back in my life. Don't get me wrong, I'm perfectly fine talking about it, I think it's important that I do, because 1 in 2 men and 1 in 3 women will get cancer in a lifetime. Nearly half of the people in the U.S. We need to know how to be. I think it's good to be open so we all know how to better deal with it. You will know someone with cancer. Someone you care about. They're going to need you and maybe my openness about sharing this information can somehow strengthen you for this journey. It's not easy, it rages across the lives of everyone it touches, but there is a bizarre beauty in it. A learning curve about the things you really appreciate in life. A clarity of vision for the things that truly matter. A peculiar balance to this tragedy. I now see the honesty of the broad spectrum of humanity and what good we're capable of. This is my anchor. These are my wings.

There's a moment as I'm waking, when I'm not asleep and I'm not awake. A moment of simple existence that has no complex thought. It's where nothing is real, but it feels more authentic than anything when I'm awake.This is the most beautiful moment in my life now. It's then that I am in a situation where everything is wonderfully in place. This is when my dreams feel like they're real. I am free of worry, Free of pain and nausea, and I am independent. There's no knowledge of chemotherapy and it's ill effects. There is no illness. I'm living in my home on my own and my life is mine. It's as if I'm waking to a normal day. It's only a split second before I'm fully cognizant of what my life really is and my heart gets heavy again. But in that moment I have enough to get me through another day. Because one day I'll have that again. And one day that moment will last longer than the fleeting twilight of my rising morning.

"You gain strength, courage,and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do."  ~Eleanor Roosevelt

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 

Looking Back, Looking Forward

I remember the day that my world stopped. I had been feeling pain in my lower abdomen for months. Barely noticeable at first. Then it grew steadily. And the fatigue. Rock climbing became harder to recover from. Cycling was getting tough. I went to the gynecologist thinking it was female problems. After an ultrasound, and a couple doctor's visits, I ended up with a misdiagnosis of pelvic inflammatory disease. Even though all tests were negative for it. Three different antibiotics and another couple doctor's visits later, I ended up going to the emergency room in excruciating pain after a long day at work. It was there that they told me it wasn't PID. They sent me in for a CT scan. And I waited. Laying in that hospital bed, I had no idea what was about to happen. They had given me medication that only dulled the pain slightly. Then the doctor and a nurse walked in. He sat down and looked at me seriously and said, "We found some spots in your CT scan that are indicative of certain types of cancer. We're going to admit you. Do you have any questions?"

I looked at him dumbfounded and said, "I have cancer?" And I paused. " That means a biopsy, right?"

He said, " Yes." And I just stared at him. I felt my entire being grind to a halt. I couldn't think much less talk after hearing that one word. I was reeling. Having been a hairdresser for 25 years and helping several of my clients with hair loss due to chemotherapy, I only had a small idea what I was in for, but it shook me to my core.

"Any other questions?"

All I could say was, "No. " and then went silent.

Having cancer has been the most cathartic thing I've ever had to endure. There is a sorrow that permeates my being and a hope that pierces through it. In the beginning it was all sorrow and fear. The prognosis was so grim. I could read it on the faces of my caregivers. The immediate reaction to my diagnosis when I was told of my first PET scan was difficult to comprehend. She emptied my hospital room so she could tell me alone. She told me that I was stage 4 and that it had spread through my colon to my liver, lungs, and spine. She spoke for a while. The entire time I felt like I was in someone else's dream. Or nightmare. She asked me if I had questions. I asked her what my time prognosis was. She didn't want to speak of it, but I insisted.  

She said," If we do nothing, 6 months. If we do everything we know how to do, 2 years." 

My family & I in Europe 3 weeks before my diagnosis

She ensured me that these are just statistics. That my case could be different. But when I heard it, the floor fell out beneath me. This wasn't really happening, was it? But it was. She gave me a stone that said "miracles happen". It seemed so trite. And all I could think of was my poor parents. How can this be happening to my family? This can't happen to them.

But it was happening. All I could do was go along for the ride. This is how it all began. They put me on serious pain killers for months to cope with the impermeable pain. Until I finally had had enough. They warned me against coming off of them too soon, but the numbing of my brain was too much for me. I needed to wake up.

Coming off of morphine was amazing. I had been living in a drug fog for 5 months. I needed it in the beginning. Badly. But slowly the pain lessened as the chemotherapy worked. And finally I couldn't stand being dulled any longer.  I initially tried to quit cold turkey. Three separate times. It was horrible. It made me realize how physically addicted I had become. It threw me into a serious depression. I couldn't get out of bed. I was constantly exhausted. I slept for what seemed like forever. And when I was awake, I cried. It was the pain doctors at MD Anderson that gave me the formula to ween myself off. It took 6 days. And it worked! I'm now awake in a way that I haven't been for months. And this is also hard. I am aware. And it's frustrating. My body is weak. My brain is active. It's hard to keep up.

There is a beauty to a life well lived.  And I miss that beauty. I long for the days when my biggest worry was how I was going to see all the concerts I wanted to go to. I miss socializing. Seeing my friends regularly was key to being happy. I miss dating. I miss the rush of a new romance. Now I know the loss of intimacy and the hope that it brings. I miss driving my car. It sits in a driveway getting dirtier by the day mocking my current existence. My impatience is constant. I sometimes wonder how I'll get my life back. Can I just step back into my life pre-cancer? How long will it take? When will I have the strength to accomplish what was normal for me before? Can I still have the career I've worked so hard to establish? I have wondered how I'll ever be intimate with someone again. How do I explain the port in my chest? Will that make a difference? Most likely it won't matter. But it's funny how the mind works. Dissecting every little thing. These every day things don't seem like much to worry about, but when they're gone, I am incomplete. 

I no longer fear death in the immediate future. Each scan of my body continues to improve. Slowly. With time I'm finding that my personality is returning. Being a smartass has always been a fun way to be me. And it's coming back. Slowly, bits of me are reminding me of their existence.  Little by little. Cancer isn't winning. I won't let it. It's a daily battle. And it's exhausting being strong all the time. Being sick is one of the loneliest, most difficult things I've ever had to do. Even though I'm surrounded by love. Sometimes I retreat into the darkness of sleep for a short reprieve in order to maintain my strength. To fight another day. Not to give up, but to build myself up. Because sometimes the ick is just too much.

It's an interesting thing to have your mortality shown to you.  We don't often think about it. We go along every day blissfully unaware. What a wonderful place to be. Though this trial by fire has taught me to be grateful, to be aware of this beautiful thing called life. To not take for granted the simple things that make every day, every moment incredible and awe worthy. I feel more deeply, I see in vivid color, music is emotion, and we are all precious. The life I knew before my world stopped is so far from my reach that I don't know if I'll ever be back there again. Though I know there is magic on the other side. And I'll learn to make it mine again. So much has changed. My perception of this gift of life is forever altered. The things I knew to be my existence were only a fleeting moment in a larger picture and not mine to keep, but only to acknowledge and appreciate. The memories I'll hold dear, but all of it is just a dream masquerading as reality. Which makes it all the more beloved. And I am filled with the wonder of it all. Why is not a question I entertain any longer. The question is how. And the answer is determination and appreciation. For this world we hold so dear to us is worth everything to hold on to. And I am thankful.




'The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at a time of challenge and controversy" - Dr. Martin Luther King

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

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