Nightmares and Fear – A New Universe of Cancer

nightmares

Nightmares and Fear

I have nightmares every time I fall asleep.  There is so much terror and uncertainty in my life that it is sneaking into my dreams.  Today I spoke to my psychologist about the things I have experienced.  It seems like if it isn’t one thing, then its another, or another, or another.  These horrible experiences keep finding me.  Its like I am continually being baptized by fire.  I do my best to make the best of it.  I try to see myself as a hunk of steel being forged into a sharpened blade.

All of the forward momentum and force of will has its limits.  Eventually you start looking at yourself asking why, why do these things keep happening to me? What am I doing that is causing all of these horrors?  What can I do to stop it?

I have been pushing the idea that I am not my cancer, but right now I feel like I am my agony.  My life is a mass of terrible things that are very uncomfortable.  In every corner there is either worry, pain or fear, and I have found no way to escape or overcome it.

If you would like to continue following me in my journey through cancer feel free to click this link to read more.

I feel like garbage

Garbage

garbage

Where am I am today?  I am in a I fucking hate this life kind of mood.  I feel like utter shit!  I am tired of feeling this way.  I can’t feel my fingers and toes, earlier I couldn’t feel my face.  I am stressed beyond imagination and I feel like all of my hopes and dreams have been stolen from me.  I feel robbed.  I feel like I am living in this shell of a body, I am so angry.  I try and I push and I do my best to make the best of every moment.  Times like these, times like these long moments I despise the cards that have been dealt to me.  It fucking sucks, there is no other way to describe it.

We must become advocates, all of us

Becoming your own advocate means you must learn how to critically research and develop critical thinking skills.  I consider personal advocacy to be an inner boundary (something I will discuss later).

Being your own Advocate means you must be a leader.  You have the break the mold of putting your life into the hands of strangers you know nothing about. These people should be working for you and not the other way around.

We should be interviewing these people, they should be earning our trust, we are their boss, there should be no point in our treatment plan that they are our boss. They are the people we are using to get a service done, if their ego or inability gets in the way of achieving your goals then they are failing in the duties they were hired for.  When this happens it is time for you to fire them.

If you hired someone to fix your motor vehicle would you hire them again if they failed to fix the part you paid them to repair?  Would you hire them again if they refused to follow your instructions?  No, of course you wouldn’t, so why are we shelling out thousands and thousands of dollars to health care professionals who are not meeting or exceeding our expectations.

Something has got to change and the only way I can see that change happening is if we have a greater understanding of our care.  If we take charge of our treatment plan and learn how to say NO, we can become a true advocate for our own health.  We have to be our own advocate.  This WE is more than just cancer patients, this is everyone.  Everyone has to be made aware of how to demand the service they deserve because they are paying for it, the service they deserve because they are a human being.

 

What does this mean? Part 1 (Introduction)

What does this mean, what does that mean, these are questions I found myself asking along the way.  Often I would see lists of abbreviations and acronyms that represented critical bits of information that did not exist within my vernacular. There is so much information in the medical world, it is easy for anyone to get lost in its sea of vast knowledge.

This series focuses on the abbreviations, acronyms and terms found on the different documents we see through our cancer journey.  This series is less entertaining and more informative, each post will have the subject matter after the part number in parenthesis.  My goal is to provide a comprehensive and easy to locate list to help you understand the difficult road ahead of you.

I want to leave off saying that I am not a doctor or a physician.  These definitions and explanations reflect my own personal research on the topic.  You should consult your health care provider when deciding your medical needs.  My goal is to give you some frame work to help facilitate those conversations.

Direction – Why do I need a specialist?

 

Sometimes it is a challenge to see our environment, it is difficult to make out exactly what it is we are experiencing.  When you are facing something as difficult as cancer it can be hard to find which direction is the right way to go. This is especially true of my cancer journey. When I started this road I put my faith into a group of professionals that I thought would lead me well. Unfortunately I discovered I was a blind man being led by another blind person.

In one of my last posts I made a comment about how upsetting it was that my oncologist knew very little about my cancer.  After watching this video it shed more light onto why he was so mistaken about the nature of my disease.

Why do I need a specialist?

Ignorance of something rare is excusable, but is it when the doctor doesn’t refer you out to someone who might be more knowledgeable? 

Bronchial Carcinoids

There are two kinds of carcinoid, typical and atypical.  I have the pleasure of owning the atypical variety.  I had a pneumonectoy on July 27, 2016.  That means that my right lung was removed in the attempt to stop the spread of my cancer.

In the following video Dr. Robert Merritt details some of the nuances of Bronchial Carcinoids.  If you have the time to listen to it its actually pretty fascinating.  If you have a carcinoid friend inside of you there is a chance it might get your gear going in the right direction.

Look here! This is another opportunity to read more about my cancer journey! If you would like to take some more steps with me, feel free to click here!

A New Universe of Cancer

universe

This piece is a snap shot in time of Kaos giving birth to the Greek universe.

A New Universe of Cancer

Discovering you have cancer is akin to the death of one universe and the creation of another.  When I was diagnosed with cancer I wasn’t strong enough to be an advocate for my own health.  I was so weak of mind and body that I entrusted my oncology team to do the best for me.  After realizing my oncologist’s understanding of my cancer was far from what I needed, it opened another universe.

This universe was overwhelming, it spawned so many questions and put me in a state of awe.  Truly it was an awesome experience, not the connotation of that word, instead the literal denotation.  It opened my eyes and made me realize that though I was facing a terrible road I had an opportunity.  In this opportunity I could help others taking their first steps down their cancer journey.  I could work to spread awareness of NETs and carcinoids.

This series: A New Universe of Cancer focuses on my research and thoughts and what can be done to help those who are on this horrible road.  Its primary focus will be Advocacy and a secondary on carcinoids and NETS.  I wish to also address the needs of those hold the hand of those walking the road of cancer.

This site is a good place to start, it provides a good introduction to carcinoids and NETS: Click me!

Time – A New Universe of Cancer

Time

Time dripped like wax from a candle as I sat in the waiting.  The chair became a distant thought as an old man slowly ambled in front of me.  He moved sluggishly like he was in a daze.  I was in the oncology department so his movement wasn’t out of place.  After my treatments I typically moved like a zombie.

There was something about his steps that was different, he was anxious, nervous perhaps.  My doctor nearly bumped into the old man and a nurse asked him to stand out of the way.  He started to speak, he said that he wanted to ask the doctor one more question.  His voice was low, it had a worry-full energy to it.  I watched a small group of people walk by while noticing the man shift his weight back and forth between his two feet.

Once the commotion passed the nurse summoned the doctor.  The older gentleman had a stutter to his voice as he spoke.  “Is it years, a year, how much time do I have left?”

The doctor stood rigid, his eyes staring coldly.

In the pause the old man filled the space, I could feel the wary anticipation in the his voice. “A year?”

“Months, maybe months.”  The doctor replied with an almost robotic tone.

The old man’s head lowered.  I could hear his voice break as he repeated back to the doctor.  “I have months to live, how many months?”

“Maybe two or three.”  The doctor said before walking away.

I watched the old man take few steps, his feet sliding slowly across the tile floor. His shoulders slumped and I could hear him whisper to himself. “Months…”

If you would like to continue reading about my journey through cancer feel free to click on this link.

 

sensations

Sensations of Neuropathy, Find purpose in the pain

The enchanting music of Enya played from the bedroom nearby.  The beautiful sound of water dripping into the soothing, hot bath was intoxicating.  It was my first bath since I had my lung removed, the sensation was a heavenly experience. The water was a cocktail of skin nourishing concoctions and detoxing medicine. The dim light of the room was romancing my soul, I could feel my spirit begin to rejuvenate.  I ran my finger tip along the surface of my palm, the texture was exquisite.  These are the moments I take myself back to as I sit here thinking about the past.

These sensations are a distant memory, now my finger tips are numb, they tingle with the sharpness of needles.  When I slide my finger across the surface of my palm the sensations are delayed, lacking the sweetness of touch.  My feet are like rubber shoes and burn like they are being licked with fire.

These are the haunting reminders of the lingering ghosts of chemo.  There are no small prices to pay when it comes to cancer.  Everything you do, every choice you make comes at a cost.  Though I sit here experiencing these less than pleasant sensations I do not regret the choices I have made.

These sensations are gifts, they are tools, they are a reminder of the places I have been, the worlds I have discovered.

Shawn White Blog

Living With Cancer

NCAN

Frustration – A New Universe of Cancer

frustration

Frustration

Such a day it was going to my oncologist appointment today.  The event has filled me with so much frustration it makes me want to laugh.  At this point I have no confidence in my oncology team.

Ultimately this is alright, in the scheme of things I believe all of this was supposed to happen.  I don’t believe in predestination, but I believe we have experiences set before us to discover new gifts.

The gift I’ve been given has been my journey of cancer.  To witness how much more difficult cancer can become when your oncology team continuously drops the ball.  In my journey every new piece of information has been beyond each step’s projected worse case scenario.  This has trained me to expect the worst, I am no longer shocked when a situation is worse than my doctor’s expectations.

Today’s frustration

Today peaking with my oncologist I asked why he didn’t want to use the Netspot kit?  His response was that Netspot wouldn’t be effective in finding my neuroendocrine tumors.

Dear goodness I was filled with so much frustration at this moment.  His statement when compared to the FDA’s website paints a very different story.  To summarize, it says that the Netspot kit is used specifically to find NETs.

I knew I couldn’t push any further with the idea, so I changed gears.  I asked him to refer me to a nutritionist.  He was shocked by the very idea that I would want one, so shocked that he thought the idea was silly.  Apparently it was beyond him to think that perhaps after (or even during) my chemotherapy that making changes to my diet could improve my health.

From where I am standing, going over what he has said to me, it makes me feel like he knows very little about my cancer.  I can’t tell you how frustrating this is. This is terrifying, right now I am questioning whether the treatment he prescribed me was even appropriate.

The Positive

The positive of all this is I now have a great perspective of the cancer journey.  I have seen where the holes are in the treatment of cancer.  Take for instance my own journey, after the removal of my lung no one suggested any kind of physical therapy.  No one explained to me the details of what a NET is, what I could expect from it or how it could impact my life.  There wasn’t even the mention that maybe I should seek out an oncologist who specializes in Neuroendocrine cancer. As my own devil’s advocate I know that I should have been my own health advocate.  Its hard to be strong like that when it all starts.  Right now I find myself wondering how any could possibly expect that out of anyone?

Now I am looking further into my own treatment, I am searching for a team that specializes in NETs.  I will find someone who will listen to me, someone who knows about the cancer that I have, someone who has the skill to treat it.

If you would like to learn more about my journey through cancer and how this moment impacted my quest for person advocacy feel free to click this fancy link.

cold air

Cold Air of Cancer

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?

Shawn White Blog

Living With Cancer

NCAN

experiencing life

Experiencing Life, Experiencing Cancer

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.

Shawn White Blog

Living with Cancer

NCAN

You are more than your Cancer

In this journey our world slowly shifts, filled with little changes that often go unnoticed.  These little changes are like droplets of water, and over time they flood our lives.  When my cancer journey began, these subtle changes took the form of research, fear and preparation. After the surgery, it was discovered that my cancerous monster was still with me.  As I recovered from the cuts, bruises and drugs the droplets became heavier and fell faster.  Once chemotherapy started the water became a continuous stream.  My entire life was flooded with this new change, this new passenger, this monster started as something small but ended up saturating everything that I knew.  Every conversation, every moment, every activity was soaked with the wetness of my cancer.  There was no escaping the unyielding, ever forceful presence of its existence.  Once I had a moment to look around and see my life, once that dreaded chemo fog had started to pull away I could see that my entire life had been destroyed. Everything had been taken away, my dreams, my loves, my passions.

The cancer, the journey of cancer is insane.  I have searched my mind for a word that adequately describes the experience and I have found no word that matches it more accurately.  None of it ever makes any sense, there is no rhyme or reason to it.  It follows no code, no ideology and serves no greater purpose.

Though the cancer itself is a terrible thing, it isn’t all terrible.  There is that chance, that hidden opportunity to take something good from this experience.  Ask yourself what is life, and why are you here to live it?  If you don’t believe in a cosmic reason for your existence, then decide one for yourself.  You are more than your cancer, you are more than the sum of your pain.  You are more than the ever-filling pool of cancer in your life!

In your moments of strength and clarity claim back your life, be the subtle changes to cancer, as cancer was to you.  Be the small droplet that goes unnoticed till it becomes a heavy rain, then finally a steady stream. Become the unstoppable force, become your greatest advocate and reclaim your life, the life that is rightfully yours.

December 6, 2016. Complain and let go of some pain

December 6, 2016

I know of no words that can effectively express the sensations i am experiencing. My body hurts in so many alien ways it is difficult to find peace or even the eye of the storm. But at least I have my fancy bag of tricks to find my way back to the boat. I put myself back at a time when I was in a healthier, stronger place. The energy of then, invigorates me now. It fills me with a good reminder of the healthy life on its way. That there are no such things as good and bad experiences, only opportunities for greater wisdom.

The world is a beautiful place. Filled with so much wonder and awe. Laying here i feel that more than ever before. Every moment is a reminder that every moment should be treasured.

Shawn White Blog

Living with Cancer

NCAN

November 6, 2016. A Day of Chemo feels

November 6, 2016

The power of this fatigue is incredible. I have never felt so exhausted in my life. The draining energy sensation is felt all the way to the center of my bones.

In these moments when all there is, is that one sensation, I do my best to become one with it. There is no sense in fighting something I cannot stop.

To fight the sensation is to squander the potential of the experience. It doesn’t make it any easier, it simply shows value to a moment I might have otherwise not saw.

Shawn White Blog

Living with Cancer

NCAN

 

October 14, 2016.

October 14, 2016

In this life if you want to survive you have to grow, test boundaries and work hard for what you want. To face down your hardships you need fuel, you need food, you need whatever it takes to keep your heart and mind nourished.

Some weeks ago I was down, lost and depressed. I was lost in the moment and angry, lonely and in desperate need to grow, survive and to thrive. I felt imprisoned within my own home, I was lonely and bored. I felt healthy for the first time in ages and I was stuck where I was. It felt like my feet were encased in a block of cement.

I was on the phone with a close friend of mine Darnel. He reminded me that I have everything I need right in front of me. If getting healthy is what I needed, then I could do all the exercises I needed from the safety of my home. I could read and research and that I had the ability to accomplish anything as long as I set my mind to it.

Sometimes all we need is that spark, a small flame to reignite the pilot light of our heart. It is a powerful thing to witness how much influence such a small spark can have on the human soul.

Shawn White Blog

Living with Cancer

NCAN

October 12, 2016. Sometimes life is hard.

October 12, 2016

I have found that pushing a cart through the store and loading groceries on a conveyor belt makes me exhausted in ways my vocabulary cant adequately describe.

Though it is a very painful experience I am grateful that I have this magical life to live. These experiences whether good or bad are better than none at all.

One day I will look back at moments like these and use what I have learned to empathize and inspire and to help others help themselves.

It gets better, we get stronger, we learn and we grow from it. If we put our positive vibes into the universe they will return to us.

Shawn White Blog

Living with Cancer

NCAN