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.

What is cancer?

The official definition of the word is...

* the disease caused by an uncontrolled division of abnormal cells in a part of the body.

* a malignant growth or tumor resulting from the division of abnormal cells.

* a practice perceived to be evil or destructive and hard to contain or eradicate 

Nothing fun to choose from here. These are definitions I want nothing to do with, but it wants everything to do with me.  So I'm forced to sit here and give heed to this nasty thing that chose to invade my life. My reluctance is palatable. I've been here studying my foe for a while though. Just sitting back in defiance of its unwanted presence. But I'm learning. I know what it wants. My complete submission. And surrender. And destruction. Yeah... that's not happening.  You can just sit back on your disgusting little laurels and fuck right off.

See I've had a couple days to think while I was in the hospital (again). Due to a bout of nausea, etc. Yes,  this is quite an enemy, but it's not something that I will allow to defeat me. Though it will try. 

Cancer starts by robbing you of your dignity. It takes your strength, and makes you beg for normalcy. You have no appetite, and though you feel like you're eating regularly, the weight just falls off. I'm smaller than I've ever been as an adult, and it freaks me out. No doubt that I'll get smaller before this is all over due to the cancer and the chemo.

I have no pride left. I have now collapsed in public, puked uncontrollably, and been wheeled out on a stretcher while screaming, begging for it to stop as the paramedics do their best to subdue me.

And the pain. The exquisite, impermeable pain. The only thing that gets me through it is knowing that it will end at some point and that someone I love will be on the other side to hold my hand and tell me it's all going to be ok. And it will be.

What it has not, and will not take is my hope. Because that is sacred.

It cannot take the love that I have because it was given to me and it's stronger than any pain I could feel.

It can't touch my determination to beat this thing. Determination is stronger than pride.

These are the pillars and the key to my victory. 

These are the things that will not be defeated.