chapter 1 deep breath

Life’s Beautiful Cacophony, Chapter 1, Taking a deep breath

Life’s Beautiful Cacophony

The Journey Begins

Chapter 1

 

Once upon a time…

Nestled within a mound of blankets, I listened to the muffled sounds of my bedroom. Individually they were annoying, together they were an orchestra, a comforting cacophony, a loving lullaby.

Outside my cave of warmth, was a frigid bedroom. Like a vampire, the morning air leeched the warmth from my room. Leaky air whistled from a poorly sealed window. An electric hum played with a rhythmic rattle. The ceiling fan spun, releasing sounds like tearing paper with an occasional crunchy click.

Blissful was the moment, safe and comfortable within my sanctuary of warmth. As the sun rose, my inside parts advised me to wake from my slumber. Lying in bed I relished the comfort of my cocoon. I yawned, and with a deep breath I felt something, an uncomfortable itch, a juicy-sludge within my chest.

I coughed to clear whatever it was. Instead, it moved a gurgle of something, a certain something somewhere. Again, I coughed, the slick thickness found its way into my mouth, it was a viscous, coppery, sticky… slickness.

The taste forced open my eyes, something strange was happening… I needed to spit this out, to get this mystery liquid from my mouth. Reluctantly, I reached my arm beyond the barrier of blankets.

Intense barely describes the cold sensation that wrapped my arm. The temperature contrast was excruciating, so cold, so shocking… it made me gasp for air.

The deep breath rattled my insides. I erupted into a coughing fit and with each hack, a glob of thick, mysterious, goop filled my mouth.

My fingertips discovered and grabbed a tissue box. Eagerly and with haste I pulled it under the covers. Slowly my flesh thawed, warmth returning to my skin.

After a moment of recuperation, I placed a tissue against my lips and spat into it. Cough after cough I went from one tissue to the next.  It hurt, it was a dry pain scouring my lungs for this neverending nastiness. I continued to hack until all the tissues were sopping wet. “What is going on?”  My heart worried, I needed to see what was on these tissues.

Raising my head from my cocoon I looked down. It was cold, but the chill paled compared to my terror. My heart sank into my stomach, the world slowed, and my heart raced. It was at that moment I realized every tissue was soaked in crimson, red, blood.


Words of Hope

Shawn White Blog

NCAN

Hope Lodge

Hope Lodge

Hope Lodge

Hope Lodge

We stayed at the Hope Lodge in Kenner.  Had it not been for this place the trip to New Orleans would have been impossible.  The staff was friendly and the environment was inviting, there was a huge kitchen and an even larger dining room.  They give you plenty of space to keep your cold or dry groceries. Additionally, fresh food was put out every day for your eating convenience.

The rooms were spacious, clean and well kept.  This place was easily more comfortable than most of the hotels I’ve stayed in.  We stayed on the second level, I tell you what, that room’s AC worked tremendously well.  Walking into it was akin to leaving the sweltering humidity into a dry winter wonderland.  It made a great night of cuddles, because it was way too cold to do otherwise.  Of course, we could have just turned down the AC, but where’s the fun in that?

Hope Lodge

Online there seems to be an abundance of zebras, but the connection isn’t the same as meeting another in real life.  When you meet someone with cancer a social bridge is automatically built.  A different bond is born when you find someone feeds and houses the same kind of monster you do.

On one of the last days at the Hope Lodge I met another who fought against the webbed chains of Carcinoid NETs.  She was a strong woman with a powerful story, her husband was equally delightful and it was heartwarming to know these wonderful people had each other.

We discovered we walked through many of the same sticky spider webs of Neuroendocrine cancer.  Online we see it time and time again, but we don’t realize how often our stories repeat through the lives of others until we discover others who have walked our same road.

Links

Personal Advocacy

Stress – We must become advocates

 stressStress is a Catalyst for Change

Storm clouds will brew and roar, but eventually they begin to pour.  When the sky opens up and gives us rain, it can fall in a variety of ways – from thick to thin, small to tall and soft to sideways.  My storm cloud of cancer has been hard and steady, thick and slick.  My stress collecting gutters have been deep and cavernous, storing more rain than I ever could’ve imagined.

The gutters of stress, like our homes serve to save our roof, serve to save our soul. They fill with an ever flowing destructive force.  A force that will find its way, that will always has its say.  Our gutters can only be filled so much, they become over loaded and begin to spill over.   At these moments, when our pain crosses the threshold of our tolerance that we decide to make a change.  It is the catalyst that transforms our existence.

It is from this moment we begin to invest in ourselves.  We gain a strength to do what needs to be done.  We become dedicated to a cause, our cause.

Stress: a tool for advocacy

This week I reached a pivotal moment in my cancer journey.  I discovered how to transform stress into momentum and to become my own health advocate.  In A New Universe of Cancer: Part 5 I begin to explore this advocacy.

Recently I started expressing my thoughts and feelings.  This exploration has made me stronger, more aware and more powerful.  Last week I could no longer tolerate how my treatment was progressing.  The scans and tests that were suggested by the sites and experts I researched did not resemble the scans and tests of my oncology team.  After considerable introspection I decided to stand up for myself.  I sent this email to my oncologist:

Email

I am not satisfied with your explanation as to why the Netspot kit (aka Gallium 68) was not used. Simply stating that Netspot is not meant for my NETs is not enough to convince me that I would not benefit from it. If the reason is because it is rare for lung carcinoids to cause carcinoid syndrome I would agree, yes, it is rare, but it is not impossible.

According to my medical records I have not taken a 5-HIAA test to check for serotonin levels. Nor have I received an octreotide scan. When it comes to my health I am not prepared to run on assumption. If this test has occurred or there has been some other test performed on me that I am not aware of I would greatly appreciate having that information.

With that said I would like to have a more in depth explanation as to why you ordered a PET scan you knew would reveal nothing. Why exactly would I not benefit from the Netspot kit? Why have I not been given an octreotide scan?

Searching for a new oncologist

After sending this email I began searching for a new oncologist, specifically one that specialized in NETs.  Following a suggestion I contacted Siteman here in Saint Louis.

I spoke with a receptionist who explained Siteman’s insurance policies.  She explained that because their organization did not have a contract with my insurance their doctors would only see me once, they would not offer treatment options, order labs or scans and would offer no additional opinions on my cancer.

I am more than willing to accept the policies of an organization and move on, but this receptionist was insensitive, condescending and rude.  It felt as though she was taking pleasure from the horror of my situation.

I asked her if she would send a note to the doctor (she claimed was a NET specialist) asking if he would provide names of other NET specialists within Missouri. She told me that she would not do it.  I asked her again, telling her that I couldn’t find any names from my insurance website or online.  She said that her office would not refer me to see anyone.

I told her that I didn’t want a referral, I just wanted some names so I could find someone to help me.  She said the only way I could get those names was if I came into see the doctor.  I asked her how much it would cost, she said because the hospital wouldn’t accept my insurance it would cost me $360.  After telling her I couldn’t afford to pay $360 to maybe get some names, I asked her to ask her doctor if they would tell me about some NET specialists. I asked her again, to just ask the doctor, that I was desperate, that I was afraid and that I needed help, I begged her to send the doctor the note.  She said no.

So I asked to speak to her supervisor, she put me on hold for about ten minutes then transferred me.  After speaking to her supervisor I was told that I would get the information.  It took some time and eventually I got the names and contact information for some NET specialists.

A Conversation with my Doctor

Throughout the day my doctor called me, but I did not feel like speaking to him.  I was out of energy and I wanted to make sure I was in the right head space when I spoke to him.

The next day my doctor contacted me and we spoke on the phone. He apologized, told me that I was right, and truly humbled himself, an act I have never seen a doctor do. Immediately he started the process of making sure the scans mentioned were ordered.  Already I have completed the 5-HIAA test and some blood work.  Next week I will be receiving the Gallium 68 scan.

I have learned from this experience.  It has taught me that if you want to receive treatment you have to demand it.  If you want to be treated like a human you have to be strong and powerful.  Unfortunately at many moments we are weak during our cancer journey, it is unfortunate that we have to not only to survive but to also receive the treatment we deserve.


If you are interested in reading more about my journey down the road of advocacy take a step back in time and check out: We all must be advocates, all of us; Part 3

 

 

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!

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

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