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.

Facebook: July 3, 2016

Today is 2 days after my first round of chemo. I'm not gonna lie, it's sucked. There are things that they tell you about it, and there are things they leave out. It's the things they leave out that mostly suck, but I guess maybe it's better that you don't know. There's no real way to prep for it anyway. At least now I know what I'm up against. What to expect. It's a pretty big punch, but I can do this.

My ability to overcome is directly related to my love for life. That's a really huge love. I laugh every day in spite of this curse. I think humor is everything, and as long as you've got that, you should have a handle on all of it. Sometimes my family and I just hug each other and break into laughter because in the end, if you laugh, it's a reprieve, a break of sorts, an acknowledgement of "we're in this together and I love you". You take pause with each other and know that it's all going to be worth it in the end. If you just remember to laugh. 

So do me a favor this weekend as you celebrate our independence, hug someone you love, tell them, and have a big belly laugh for me. It'll be the best thing you do.

Happy 4th of July weekend!

Love and light,

~N

Facebook: July 1, 2016

Yesterday I finished my first round of chemo. It feels so good to be able to fight, instead of just laying in a hospital bed waiting for answers like some victim. I feel now, more than ever, that I have the power to conquer this evil. It's not easy, but it's progress. I am now a warrior.

Today I get to leave the hospital and go home to a new life. I'm staying with my incredible parents for a while until I'm stronger. I never thought that living with them again would be so welcome, so warm. I'm so thankful for every day that I am blessed to have them in my life. I cherish every moment of every good wish, every offer of help, and every bit of love that I receive and feel from you all. My friends, my family. My gratitude is endless and my heart is full.

Tomorrow I will plan for a future that will most certainly be beautiful after the battles, after the scars, filled with vision and appreciation for all of the experiences that I will have had along the way. My future will never be taken for granted.

Love and light

~N

________________________

Going home was bittersweet. I wanted nothing more, but I wasn't sure how to handle not having my normal life. This was reality slapping me in the face. It was really making a habit of doing so.