Most times when I breathe it hurts, like a knuckly knot tying off the life to my lung. Sometimes when I breathe it feels light, gentle and soft like a soothing sheet cuddling us asleep. Tonight as I lay in bed waiting to dance my sleepy time tunes my heart bounces behind my chest. It’s a rhythmic lullaby, a soothing story, a ballad of better times. The air is easy and for a change I do not feel queasy. My heart feels loved and I’m not being shoved. I feel good, great and even better now I am in a sleepy state. This is a marvelous moment, a comfortable time and a sign of a soothing scene that is coming to me in the land of dreams.
This marks the first episode of my Power Advocacy podcast. My goal is to illuminate the path for those who seek to navigate the treacherous road of cancer. I want to help you find the way, to guide you through turbulent waters into the soft, soothing sea. I hope that these words will give you the power to reach for self advocacy, to taste independence and to become the master of your fate.
Dreams and Passions
It is important to have dreams and passions. They are the fuel your heart uses to empower your mind to achieve great things. The misery of my cancer journey has made me a powerful man. I want to teach you how to become a powerful person. Come join me on this journey, lets make the cancer road a less horrific path.
- …in the process of developing a self advocacy booklet. This illustrated source book will provide the tools you need to become your own advocate.
- …looking for cancer organizations who would be interested in spreading cancer awareness and patient advocacy.
- …working on finding resources that will make research easier on current and future cancer patients. The internet provides a wealth of information, but not all of us are rich enough to know where we can find it.
- …writing an autobiography that focuses on my journey through cancer and the tools I used to navigate its treacherous waters.
- …searching for ways to bring greater awareness to my own cancer (NET/Carcinoid), so others my reclaim their lives and live life to its fullest.
If you would like to read more about my journey into self advocacy feel free to click on this loving link.
Every choice we make has a price, from the softest simplest decisions to actions of incredible magnitude. When it comes to cancer the prices are inflated, no matter what we do, we will feel a great amount of agony. Although we can’t escape the agony we can influence how much pain we are willing to pay to live. If you have never faced the big decisions of life and death, treatment or no treatment these concepts are truly impossible to understand. You might be able to fantasize about what you would or wouldn’t do, but that’s all they are, fantasies. I hope you never have to face the cold air of cancer to discover what you would actually do.
Lets dial it back a notch and imagine a simpler, easier place. Imagine laying on your comfortable bed, as you stretch and sprawl out you hear a soft pop. Now there is some slack in the fitted sheet beneath you because its has come loose from the corner. You lay there for a moment, you could get up and remake the bed and sure it might make the experience more comfortable, but you are going to lose the comfort you currently have. If it is a chilly morning you are guaranteed to experience the cold air outside your comfortable cocoon. In a lot of ways this is how cancer is. It sucks that the bed is slowly unraveling. However, if you try and fix it, you are guaranteed to lose something you currently have.
I love the warmth of my bed in the morning, feeling those soft clean linens around my body feels fantastic. Poking my foot into the cold air, then slowly sliding it under the warm blanket is such a magical sensation. This comparison reminds me of the first day I started coughing up blood. I was nestled in my bed, comfortably relaxing within my blanket burrito. The comfort slowly slipped away as I started coughing and hacking. Though I knew something bad was happening, I dreaded to see exactly what. My reluctance to reach into the cold air outside my cocoon has paralleled many terrifying moments of my cancer journey. There is peace not knowing. However there is horror in it too. Eventually a time comes when we are forced to face our misfortune and endure the cold air of our cancer.
When the time comes for you consider moving from your perfect pocket of warmth, ask yourself a few questions. What is the goal, what will you gain from this, what will it cost and will it be worth the sacrifice? In the journey of cancer we all have to a price to pay, that price isn’t in money, it is in pain. How much pain are you willing to pay to live?
When we get up to fix the sheets it comes with a fair amount of discomfort. We have to give some to get some. With cancer it is much harsher, you have to give a lot to maybe get a lot. It is a gamble, the bed you make might not be the one you want to sleep in. Whatever you decide it is your choice, no one else can or should make it for you. When everything is said and done, you suffer with the consequences of your action or inaction. Whichever decision you make it comes with a hefty price, and when it comes to cancer there are no small prices to pay.
The cold air can haunt your dreams
Years ago when I first wrote this it was after having a nightmare. My sleepy time tunes should have been terrific, instead they were terrifying. My night time slumber land was wracked with terrible feels and dream sights.
The dark dream was set in my home. A terrible rain roared above, like a waterfall thick droplets soaked my roof. There was so much water the house couldn’t keep up and so it began to pour into the attic and drip through the ceiling. The floor was covered in water and my basement was flooding. Everything was falling apart. No matter how much I worked to save my house it continued to fill.
I can remember distinctly feeling like no matter what I did, no matter what changes I made, the effects of the water would remain. There were moments in the dream when I was outside my house looking inside. I was both inside and outside at the same time. My outside-self watched as I fought the torrential downpour as it obliterated my home. As I watched I considered my options, I could let the rain do its thing and then reenter the home like nothing happened, or I could cut out the bad parts and treat the remaining wood with chemicals.
I was afraid of cutting it up and spraying it with chemicals, because I wasn’t sure if I could handle that stress. Could I walk away from the home? Maybe instead I could just do nothing and let nature take its course? I knew with this kind of damage there was no way I could permanently fix it. I didn’t want to leave my home, yet at the same time I didn’t want to continuously struggle to fix it. Its a daunting task, especially when its destined to be destroyed. My home would be uncomfortable to live in with the warped floors and wet ceilings, but that life would be better than to have it cut up and gutted.
Sometimes our dreams process our fears and thoughts.
Our dreams grant us the opportunity to explore our world in another way. Its a time when we can see our life with the insight of our sleepy time eye. This nightmare was a reflection of the cold air outside of my blanket. I had just completed chemotherapy, the harm it had done was horrible and I was afraid of enduring it again.
The symbols in the dream were obvious, even within the first few minutes of waking up I knew what they represented. The water was the cancer and my home was my body. The dream was a conversation with myself, a dialogue between the deepest depths of my inside zones and the outer layers of my personality. It was an internal conversation and contract with myself to never again endure the horror of chemotherapy.
Make the right decisions for you and only you
It all comes down to making the right decisions for you. We all have to decide how much we are willing to endure. At what point are you done dealing with the hell of hardship? Is there a point when you call it quits and when you reach that point, what will you do?
No matter what you decide, select your treatment with considerable thought. How you will feel afterwards. What are you giving up to live, how much life do you need to have the experiences you want, and who’s wants are you following?
While experiencing life I have faced all sorts of challenges. Some have been OK but most have been terrible, that’s the nature of the journey. If cancer were a super fun time, then people would be taking summer vacations to visit. That’s not to say that there aren’t good things about it, it is just not the most fun adventure.
Sometimes we forget this disease is a part of our life, it is an experience, life by its very nature is meant to be explored. From time to time we need to take a breath and calm down, look at our lives and think about what we are going through. Perhaps ask ourselves if we want more from our existence than the pursuit of survival?
I don’t want to live just to survive, I don’t fight to defeat the monster inside me. I am here on this beautiful earth to experience life, to create a legacy and to do something that improves the value of existence for others. The pain, agony and finality of my cancer reminds me of the limited time we have on this world. It reinforces my resolve to pursue my passions, achieve my dreams and live life by my terms. Instead of heeding the wishes of my disease.