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

Perspective

Angels come in all forms. I'm surrounded by them every day. Family, friends, coworkers, neighbors, even people I've never met. This time my angel was called Jeannie. Jeannie and I have known each for years. She's always been kind, amazing, strong, inspirational, encouraging, intelligent, hilarious, incredibly fun and became one of my dearest friends very quickly many years ago. Now, during the most difficult time of my life, she scooped me up and flew me down to Neverland (Key West) to rejuvenate in between chemotherapy treatments. She told me that if I needed anything, that she would handle it. If I needed nurse care, special foods, a wheelchair, anything at all. I felt very safe going. Even in my fragile state. I wasn't sure how this would go. I didn't know if I would be strong enough to do this, but I sure as hell was going to try!

Lately I've been pushing myself to try and become a member of society again. I have been rewarded every time, even if I've had to struggle to be there. So I encourage myself to interact with normality. It's funny what becomes normal when your life is upside down. Perspective is a great teacher. If you look at things from a different vantage point, you see things differently. For instance, I would've never thought to enter a tattoo contest at a bar. Much less get up on stage at a bar and strip down to a bikini to show it off. This is definitely not my m.o., but for some reason it felt perfectly normal at the time. I've let go of what "normal behavior" is. And it feels good. For some reason, doing something that I would've never done before felt like it was something that I should do. I always like adventure, but this wasn't that. It was different and I've learned that I like exploring something that makes me laugh. Even if it means doing something unconventional. And I'll be damned if I didn't end up sharing the "best female tattoo" trophy with my bestie who drove down to hang with us for a couple days. An instant reward for putting myself out there. When normal is wondering if you're going to make it through the day without needing a nap, puking, or fainting, who gives a damn about if you enter a tattoo contest. It was fun. It helps me to forget, even if just for a short while, that cancer is pervading my life. So I guess that means laughing at myself while trying something different is so incredibly worth it.

This trip to Neverland was bittersweet and unlike any trip I'd ever had on any other visits

. I couldn't ride a bicycle, I didn't have the energy. I couldn't kayak. I had to take naps. I was very sensitive to the heat and sun. I wasn't able to do everything I love to do there. But there is a battle that goes on constantly between my brain and my body. I am constantly thinking that I can do more than my body will allow. I have a fair amount of good hours. Then there's always a moment when my body says,"No more!" And I faint, or I get sick and lose all the energy I thought I had. This is when the frustration hits and the anger and the tears come. When that dirty bitch, cancer, reminds me it's still at the party. 

I was sick and bedridden for an entire night and day, unable to stand. Every time I tried, I fell down. At one point in the middle of the night during one of my many bathroom, get sick moments, I just laid my head on the cold tile floor and passed out. I must've made my way back to bed at some point since I woke up there. It was bad. One of the worst since I got out of the hospital the second time. Jeannie nursed me back to some semblance of ok, then took me to get IV fluids. That did the trick. There are moments in life that are so difficult that you don't know how to make it through. Then an angel comes along and helps you do it. In a way it was a reminder of what was out of reach, but also what there was to look forward to. Right now I can't have the life I yearn for so desperately. I dream about the simple things I want. Like riding a bicycle or laying out in the sun. I think about being able to walk Jude along the beltline or taking her to the dog park for a few hours so I can run and play with her like we used to. I sit and remember what it was like to live on my own and have my life. It hasn't really been that long, 3 1/2 months, but it feels like a lifetime ago. I know I'll have it back one day. I just need to keep remembering.

I can't help but feel as if I'm letting go of everything I've known as my life and waiting for the new me to emerge. Maybe this crazy thing that's happening has a greater purpose that I haven't figured out yet. There is a strange sense of curiosity and peace that resides within me along with the frustration and pain. Because even with all of the things that I can't do, there are things that I still can. And more. I can still laugh and love, I can appreciate a beautiful sunset, I can act completely ridiculous and share happiness. I can feel the sand in my toes and the saltwater on my skin. I can listen to music, acknowledge it's uniqueness, and feel it in my soul. These things stay stable within me. This life test that I'm enduring feels like I'm evolving and growing. Growth is change, growth can be painful. Maybe this is my time and this is my chrysalis stage. And maybe in some inscrutable way I'll emerge from this beautiful and strange and more me than I've ever been.

"Nothing is permanent in this wicked world, not even our troubles."  ~Charlie Chaplin

Strong

Life isn't fair. If someone told you that it is, they were either lying to you, trying to protect you, or don't have a clue about reality. What is fair? It means honest, just, straightforward. Fair is the notion that you are owed something simply because you exist. Because it is the right thing. Unfortunately, that isn't always the case. And what about reality? Reality has its way. Sometimes difficult, sometimes heartbreaking, sometimes so uplifting you can't help but spill happy tears. But feeling it is what makes life incredible. Knowing that you can honestly feel what is happening in your life gives you true appreciation for living it. It seems so strange that feeling such painful and difficult moments can also make you feel the exact opposite. I am not a pessimist, but I allow myself the deep, dark moments. For I know there is beauty beyond it. That feeling this means that the systematic poisoning of my body is somehow working.

Sometimes it's just too hard to stop the tears. So I let them fall. Sometimes the nausea and vomiting takes over. And the frustration. The inability to cope turns into tears streaming down my face. If I could only turn it off and know that is all going to be ok. But sometimes it's so difficult it breaks my heart over and over again. Sometimes the strength it takes is so far out of sight that my sorrow covers me like a blanket. I can do nothing but surrender. I know I can make it through, but I don't know how to not succumb to the emotion. I pray for strength. I pray for hope. I cry through the pain. Curled up into myself waiting for the next blue sky. Begging for release from this reality of mine.

I struggle with every moment to remember my identity. Who am I? Am I my disease? When can I find who I am or what I was? These dark moments are not my soul. They are part of my fight. They are not me. They are this horrid dance with reality.

"But you don't look sick".  I hear it a lot. Though I feel it through my very soul. It aches throughout my entire being. There are times that all I can do to push myself through is to cry and wipe my own tears. To hide my lowest moments so I don't hurt the ones I love. Day after day, becomes month after month. When will it end? Strength and weakness intertwine and become each other. And I wait. And I fight.  And I struggle with this beast.

Then I think about one of my dearest and oldest friends and her daughter who is also fighting for her life. Four years old with a rare autoimmune disease, on daily dialysis, and that needs a kidney transplant. Who doesn't have the maturity to understand what's happening to her. Her entire family is fighting with her. And I think to myself, if she can do it, then I can do it.

I've learned to live for the good moments. There are times when I feel mostly ok. When I have a huge smile on my face and there is love all around me. A message from my friends and family. Having lunch or having a couple of hours of music while I'm out. Dressing in costume with my dear friend who refuses to miss one chemotherapy with me. These times are incredible and beautiful. This is when I know that every difficult moment is worth it. I try to create these moments and share them whenever possible, because I'm not the only one going through this. Though I wish that no one else would ever have to.

I am constantly inspired by the love I'm surrounded with. The people I speak to and hear from. They remind me that who I am is not lost. They remember and I can see that there will be a life after this. I just need to be strong enough to make it through the next three to nine months of intensive chemotherapy. It may be more. I get encouragement from cancer survivors. They've been through this and push me to  keep going. My brother who always checks on me.  My incredible parents who have devoted themselves to me and my existence right now.  They care for me when I can't. Taking me to chemo and every other appointment that goes with my treatment. They are going through this too.

And then I heard the news. This fight is working. This trial by fire. My most recent PET scan showed progress. My cancer is beginning to recede. A little bit from everywhere. This is my patch of blue sky after 3 months of visits to hell. I'm so cautious to accept this news. It's hard to believe after hearing so much bad. But I'll take it. And I'll run with it.  And I'll keep going. Not long after I heard my news, my sweet friend's daughter found a kidney donor. They're planning the surgery now. Gorgeous little Lyla is getting her kidney from a beautiful soul.

So there is good after the pain. Sometimes in the hardest of times, a little sun shines through and reminds you of how beautiful this world can be. That the fight is worth it.

No, life isn't fair. What a myth to think it is. Though it is beautiful.

 And I'll take beautiful over fair.  All day long.

"You never know how strong you are until strong is the only choice you have." Bob Marley

Juxtaposition

I realize that for me it's really difficult to be sad, mad, upset for a long time. Yet I feel these things. So I try to balance it with laughter, appreciation, and happiness. It's impossible to not fall into moments of frustration and uncertainty, so what I try to do is to fall openly into happy moments and forget the bad stuff. Even if it's for just a moment.

I felt the need to try and go out. I need music and friendship and it gets me past the other, more frightening stuff. I had tickets to a Yacht Rock show. I had them before I was diagnosed with this insidiousness, so instead of letting them go to waste, I found a way to make it. This meant going in a wheelchair. To be honest, this was incredibly difficult for me mentally. I knew there was no way I could physically make it through the 4-5 hours that the show would be. I just don't have the strength for that yet.  Going to a public event while being in a wheelchair was horrifying to me. This is completely illogical. That's what a wheelchair is for. But you can't always control your feelings and logic is sometimes elusive. I have always been strong, independent, and have done things my way. This meant temporarily losing a bit of these aspects of my personality. Very important aspects. Now there would be eyes on me. It felt like people would see that there was something wrong with me. Maybe I would be pitied, maybe people would look at me and whisper about me in my chair. It's ridiculous to think these things. I know this, but it didn't change that I was. So here I was, stuck in the middle of a battle with my pride and self consciousness, and my need for live music. It wasn't a choice. This was a need. So I went. As I got into the car, every fiber of my being was fighting with me to leave the chair behind, to try to blend in. But my beautiful friends were there to catch me in my moment of weakness. They wouldn't let me leave without it. They made sure it was all going to be ok.

Once we got there I felt my stomach twist into knots and my muscles tense. I got out of the car and into my chair. As one of my friends went to sort out the tickets, I sat in the chair with the other by my side. It was then that the crocodile tears began to stream down my face. The frustration of having lost control of my life to this cancer had manifested itself into this situation as a wheelchair. And I was helpless but to surrender. It's been 2 1/2 months since I've been able to work or have any semblance of normality. Every day, every moment, every bit of energy I have is spent fighting this monster. And as much as I have the strength and determination to do so, my moments of sorrow, brittleness, and vulnerable anger still eek their way through. My friend stood by my side and consoled me as I hid my tears behind sunglasses. They stopped within minutes as I took control of my emotions. I had to be very conscious of controlling this threatening break of a dam. Fortunately, I was able to.

Just then, my friend came out with a smile on his face. "They were expecting you! They upgraded us to VIP and gave us hats! They also told us to stay behind after the show to meet everyone."  I guess my email asking about handicap access and explaining my situation had given them cause for kindness. I was floored and humbled by their generosity. It's amazing how kind people really are. It's one of the extraordinary blessings I've been able to witness while on this journey.

We then flew down the wheelchair ramp and into the crowd. It wasn't long before I forgot about everything that was stressing me earlier. More of my friends joined us. We laughed and we danced. In the end I was glad for the wheelchair as I had to sit in it intermittently and for the last hour or so. I had the most incredible time!

It's really wonderful to have friends and music. I believe that these two things can make the world beautiful. At least my world. Finding balance right now is difficult. I'm constantly working towards adjusting to my new normal. On one hand I have the determination and drive to conquer it all, on the other there's a frightened girl wanting it all to just go away. There is a fragility and strength that coexist within a life. There is a constant ebb and flow between the two. And it is sublime. This is what reminds us of the delicateness of being human. This is what reminds me of the beauty in this world worth living for.

"There is nothing worth more than laughter. It is strength to laugh and to abandon oneself, to be light. Tragedy is the most ridiculous thing."  - Frida Kahlo

What does it mean to fight?

I've been thinking about what it means. I had this idea in my head that fighting means to get into an argument or to throw some punches.  It always seemed to be about violence or anger.  For the first time in my life I realize how outdated those thoughts are. Fighting is about using all of your mental and bodily efforts to achieve a goal. No matter the cost. It means waking up and appreciating the beauty in this world in spite of the exhaustion. It means loving despite this hateful thing trying to take over my body. It means believing, though the odds are against you, that each day is worth greeting. It also means knowing when to rest for the next battle. Sometimes that's the hardest thing to understand. I am, at times, surprised by what the fight is when it hits. Early on, it was desperation, fear, pain, nausea, and sorrow. I was filled up with thoughts of, " how could this really be me?" I had such anxiety with the thought that my body was failing me as my mind was making so many plans. It was so discordant. But I fight. Because life is  beautiful.

Fighting means having faith that it'll all be worth it in the end.

It means laughing in spite of the odds and enjoying each good, pure moment for the sake of it.

It means eating when everything tastes repulsive because that's where you get strength.

It means being a pincushion and pushing through it all with a smile on your face because it's the goal that's important, not the experience you need to endure.

It means that the life that's being threatened isn't something you're willing to give up.

It's knowing that chemo, the same thing that is breaking your heart, will save your life... and embracing it.

And I think about what it means to win. Winning doesn't mean you get to walk out of a ring with a prize belt. It means you get to live a little bit longer. And if I can have a few moments of health, then I have won. If I can inspire one person to believe in this incredible life, then I have beaten this. Winning is not some physical trophy, it's appreciation for what's real. Basking in the enchanting magic that is our existence.

If I can love a bit longer and smile a bit bigger, then it means that laughter is still prevalent in my life and that feeling is incredible! Especially when I get to share it. Then I have won.

My friends and I dressed up as superheroes for my most recent chemo. I wanted to do something nice for everyone, so we gave cookies to the nurses and  white roses to the patients. I walked up to an older blind man and held a rose out to him.
"I'm giving this to you. " I said as I placed it in his hand.
He said, "what is it?"
I said, "a white rose."
"Why?" He asked, with confusion on his face.
"Because we're all here doing this together. We might as well have a little fun." I said with a grin.
He thanked me as he accepted his rose and then he smiled. His smile was the most radiant that I've ever seen. And for just a moment, we weren't a bunch of people with cancer getting treated in a room.  We were people celebrating the simple beauty of this life. And in that moment we all won.

I still love this magnificent existence of mine. Through the agony, through the hard times. Through everything I'm going through.  Every bit of suffering, every bit of pain is worth even 5 minutes of this incredible thing called life.  And I could stand going through everything that I must for just those few moments and for the love that I hold within me and see around me. It's so worth it.

Ch-ch-ch-changes

It's only been 6 weeks since I found out I have cancer.  In those 6 weeks I have become a different person. It has been a difficult transformation that seems to have taken forever in just a moment. Six weeks after all isn't that long at all in the big scheme of things. It's amazing how a reasonable measure of time can feel like an eternity when you're waiting for an answer about a medical test or for a pain or nausea medication to take effect. Then I think about the last concert I went to or when I was out riding 50 miles on my bike with friends and it felt like it was just yesterday. None of these perceptions of time are accurate. Yet all of these things define my life. And it will never be the same.

I can't seem to explain why all of a sudden the sky is so much bluer, the clouds more beautiful, and the scent of a flower more enchanting. Mother nature seems to offer her best to me lately and I couldn't be more humbled to accept her offerings. It's as if through my fog of pain medicine, breakthrough pain, and nausea I am somehow completely clear on the beauty that this world has to offer. And I am thankful.

I've learned to appreciate the little things. Like when my dog, Jude checks on me throughout the day to make sure I'm ok. When I'm not, she let's me know she's there to show me love. She's even let me know when there's something wrong I may not have noticed. Those of you with pets will understand the subtle language of animals. Those who don't, trust me, it's magic.

I no longer feel fear. I felt it a lot in the beginning. When faced with this disease, fear is wasted energy, so I choose not to indulge in it. Why waste the energy? I do sometimes succumb to frustration, but I allow myself that. Some things you have to feel to grow, then know when to let go. So my energy is now focused upon the things that will benefit me and those around me. I have approximately 3 to 5 good hours in a day at this point. Soon I'll have more. Since I only have a finite amount now, I need to budget it and I spend it wisely.

I have opened myself up to love. That frankly makes me sound like a complete sap!  But it fuels me. So if I'm a sap, so be it. I'll take that title. It doesn't really matter. As long as it works. This love has been shown to me by the countless beautiful people who support me every day. The ones who send me messages, call me, visit, and raise money so I can keep up with my bills and I can concentrate on getting better. Even just a thought or prayer by those whose voices I'll never hear, and faces I'll never see, but whose encouragement I always feel have sent me wishes that provide strength to keep me going. And I strive every day to be worthy of such care and sweet, strong verve. My faith in humanity is alive and well because of the multitude of people who spur me on.

I also stop to treasure  the moments I occasionally experience without nausea or pain because those are the truest moments I have now and they are marvelous! Those are the moments I can see my parents aren't worried and they are happy for all of us. They can let go of the concern, even just for a short period. Those moments are the ones I can share with my friends old and new so we triumph together. After all, it's not the bad times or the hard times that define us, it's the things we take from them, the ones after them, the good ones, and the true ones that are significant. No matter the length of time, but the importance of it. All of these wondrous moments have no sense of time. They exist within my spirit. No matter when or how long they are perceived. For they are always.

"Time may change me, but I can't trace time" - David Bowie 

Chemo

I went in for round two. A little nervous and a lot determined.  I didn't know what this round would be like, I was hoping that it would be easier somehow, that it wouldn't be as destructive to my body, and that the pain would be more tolerable. Well it was. The first one was definitely one that made its presence known, but the second was more bearable. It still sucks, but I feel like all the good intentions and all the wonderful shouts of encouragement have helped me fight harder and make this chemo more effective. I learn more about this disease and the things associated with it every day. The truth is that it's hard. The hardest thing I've ever had to do, but the love is amazing. You are all amazing.

This time I went into the infusion center. I would be there for about 5 hours. I started in the front where they accessed my port. This means they put a needle in it with attached tubing. It still feels weird to have something implanted just under my skin for the sole purpose of filling me full of this poison that's going to save my life.

I was then led into the main area. It's a big room filled with recliners and people getting chemotherapy. I chose one in the far corner. It was here that they would hang several drugs so my body would accept the chemo and the 5 succeeding drugs that comprised my cocktail for the day.

They call my chemo drugs "5 FU". A well suited name. It's one of the harshest chemos to endure so I'm told. It apparently has some fantastic results, so I can handle it. I can handle the pain, feeling overheated, the persistent nausea and vomiting, the dizziness, and the exhaustion. The almost fainting spells, my dry and cracking skin, the weird taste bud reactions, my nonexistent appetite,  that cold is painful - even excruciating, these things I can handle.  But this day, they told me one of the most difficult things to digest. I am toxic. They warned my parents not to expose themselves to my bodily fluids. That if I should sweat, throw up, or have an accident, (I'm thankful that this hasn't happened) don't touch it or the clothes or sheets. Use gloves and masks. Wash everything separately. And don't touch my tears. My tears. Can you imagine being a parent and hearing that they can't wipe away their child's tears? That they have to wash their hands so they're not exposed to the poison that their child now is if they do. It oozes out of my pores. I'm filled with it. I have to be careful when I touch my dog as well. My sweet Jude that won't leave my side. No sweat, no tears, etc. Again. But I still fight.

I see how difficult this is on my incredible family. How my beautiful mother holds back her own tears and makes me promise in a shakey voice that I'm going to beat this and how much she loves me. How my father does his best to keep everyone's spirits up, makes my breakfast when I wake, and faces every day with the conviction that his baby is going to be well again. And my sweet brother who wants to be here and lets me know that he's there for me from so far away. Yet they try to hide their emotion.

So I fight harder so that one day they can wipe away my tears of happiness and success and don't have to wash their hands afterwards. I'm stubborn in the belief that this time will one day end and all of the plagues that accompany cancer and chemo will be a distant memory. That my family can love each other without fear and sorrow of this horrific curse. I fight for that day. I believe in that day. And I know that it will come.