Living with Cancer

What is it like to live with cancer?

This is my journey. Perhaps you can stick a tooth pick into one of these morsels to sample my three coarse meal of cancer.

My story began in 2016 when I knew something was seriously wrong. I had been feeling terrible for years, but when I started coughing up blood, my life started to drip down the drain. The drain lead to a pipe and my life spiraled round and round with the rushing water.

I was caught in the unpredictable current of cancer. As it lead me forward, the obstacles became increasingly horrific.  My first great trial was my pneumonectomy. This was a surgery used to remove my right lung and it was a nightmare.

My second trial was the torture of chemotherapy, a buffet of awe-inspiring agony.

My current trial has been the torment of the unknown and the soul crushing hell of chronic pain.

The Life Coach

Life coaches and gurus speak about systems and methods to achieve a prosperous life. Don’t feel bad when they don’t work for you, most likely they don’t work at all. These people make a living by pretending to be your friend and selling you advice. If a trained psychologist or psychiatrist can’t heal you, how can this self-appointed life coach?

Hiring someone specialized in your field or need may be helpful or entertaining, but it is important to evaluate their qualifications. Many may claim to have insight or abilities that are simply untrue, these are charlatans selling snake oil. They have no genuine interest in helping you, their primary motivation is to take your money. Others may believe they have the capacity to transform your life, but most will do more harm than good. The final sliver of coaches represents a number who are qualified, capable and interested in helping you live a better life.

Surround yourself with the feather you want to be

Life coaches and gurus often say you should surround yourself with wealthy and successful people. They teach their clients to ride tailcoats and manufacture friendships. They want you to believe they are successful so you continue to pay them to be your friend and sell you advice.

Hanging out with wealthy people will not make you wealthy, unless of course they give you their money. Instead of paying people to be your friend, riding tailcoats and using others, just try to get to know people and make friends. Look for people with common interests and share ideas. Fake people suck and everyone knows it, the more artificial your are the more awful you become.

Surround yourself with the feather you want to be. This means spend time with good-willed, loving people with peace in their heart. The right people are the ones who encourage us to achieve our dreams and to live with purpose. They are passionate, confident and want to leave the world better than they found it.

An MLM isn’t the answer

There comes a time when we decide to take charge and become our own captain. We build a ship and set sail to explore the sea and discover treasure. We are ready and willing to invest ourselves fully, sacrificing freedom for fortune.

Unfortunately, many entrepreneurs are blown off course and get caught in the web of an MLM. These organizations leech the life from everyone caught in their pyramid shaped web. They are a caste system of wealth, serving as the literal representation of ‘the rich get richer and the poor get poorer.

MLMs manifest in a multitude of ways, but all share a few commonalities; most of the money is made by the first members, the organizational structure is shaped like a pyramid, and they all sell an overpriced product.

They sneak into the lives of good-willed, loving people pursuing their dreams of entrepreneurship. After infesting them, they slowly eat them alive like a flesh-eating maggot. They achieve this by using underhanded manipulative tactics that trick even those with a strong will.

The sensational sparkle of success

Lurking in the tormenting tide outside of the MLM is the hunting ground of the life coach. These unregulated experts offer advice and friendship in exchange for money. What connection do they have with MLMs?  Earlier I mentioned how life coaches and gurus advise their clients to surround themselves with wealthy and successful people. They use the MLM as a tool to show off their wealthy, connected and powerful friends.  Your life coach may suggest you to join their elite organization, claiming you’ll have all the components needed to rise to success. Of course, when you fail, the reason will be simple, you didn’t want it enough.

The Golden Sliver of Good

If there is a sliver of qualified, capable and compatible life coaches, how do I identify them?

Qualifications

What is their background? In what way is their past relevant to your life? If you have cancer and are seeking guidance through these troubling times, could you trust the advice of someone who has never walked this terrible path? As an aspiring entrepreneur could you trust advice from someone who has never started their own business?

What is their education? In today’s world a degree isn’t what it once was. The job of your choice may require a degree, but the specifics of the certificate is rarely important. When it comes to coaching, their education must be relevant to the guidance given. This education doesn’t have to be a formal one, but it should be extensive and insightful.

Ask your potential life coach what their training is and demand examples of their competency. Avoid anecdotal evidence of success, word of mouth and written testimonials are easily manipulated and distorted.

A degree in counseling or psychology doesn’t guarantee quality. However, it does improve the likelihood they are in a regulated industry and have liability insurance. A coach may still serve a valuable role in your life even if they do not have a mental health related degree.

Capabilities

How capable are they? How will their advice benefit you? Do they posses the intelligence, empathy and charisma to be an effective guide? Is their insight original or could you buy all their wisdom in a book?

What challenges have they overcome? Its easy to hear and read the hardships of others, it is far more difficult to live them. Overcoming the odds and coming out on top is an even greater challenge. In what ways have they faced the impossible? Have they been burnt asunder and risen from their ashes like the phoenix? If your coach wants to guide you, make sure they have experienced the spectrum of terrible to terrific.

How have they overcome the odds? It’s a bold move to claim unfounded hardship, but it happens. How do we know if our coach is telling us the truth? One of the best ways is to listen to them tell their story. Listen to the subtleties of how they learned to survive and thrive. Ask for all the details of this, that and everything in-between. Speak to the people who were there when the coach crawled through the muck and the mud. Research everything in your coach’s story, investigate their past and trust your gut.

When I advise people recently diagnosed with cancer I suggest they use an oncologist specialized in their disease. A generalist may have a great understanding of cancer in general, but they don’t understand the specifics of your special needs.

Life coaching is similar in that you shouldn’t waste your money on someone who isn’t a perfect fit.

Motives

What is their primary motivation? What maters most to them?  Are they the golden sliver of good or a wolf in sheep's clothing?  How do you ascertain if they want to help us? By asking questions, investigating who they are and trusting your gut.

 

burglarized

Burglary, theft, betrayal and a friendship destroyed

Our worst decisions often lead to the greatest rewards. It is from these mistakes we acquire the greatest wisdom. In the last few months of 2017 a friend came to me needing help, and so I helped. The price I paid was far more than I expected, and for my hospitality he gave me misery. This person claiming to be my friend threatened to kill me, burglarized my home, destroyed my possessions, took my medicine and stole my money.

He encouraged black mold to grow in his bedroom by modifying his humidifier to belt out copious clouds of steam twenty-four hours a day. He urinated in soda bottles and stashed them away in his closet. After burglarizing my home, he blamed everyone, creating insane narratives to weaken and break my will.

This ‘friend’ knows I have cancer. He was there when my lung was removed and witnessed the horror of my  chemotherapy. Living with me he knows I live in pain every day and I’m trying to climb from a deep, dark pit of hardship.

Even to this day it sickens me to know people like this exist. He is the kind of person who ruins ‘help’ for those who need it. The kind who crushes hopes and dreams by grinding them up with manipulation and lies.

It’s hard to keep from screaming and asking why or demanding the universe for an answer. Every season seems to deliver a steaming hot plate of terribleness; and though I am grateful for every scrap of wisdom and beautiful blessing it doesn’t make it any less painful. Sometimes it just feels like the whole world sucks.

It’s not all bad though. For the most part the world is a really great place. Sure, there are a few bad apples, maybe we’ll step in a few road apples, but there are far more candy apples. We must remember the delicious sweet flavor of life and continue to love each other. The lessons we learn should be remembered but not to hinder us. These lessons are there to guide, help and heal each other.

Though my anger urges me to see this person as a monster from surface to center, my spirit sees a hurting human. I want his broken soul to mend itself and live a life worth living. I have hope this person will learn from their mistakes and stop destroying the lives of others, but I have the wisdom to know I need to protect myself. I must protect myself from this hurting human who wants to hurt me.

How did I protect myself from this friend, this person who tortured my heart and mind, threatened to kill me, burglarized my home, destroyed my possessions, took my medicine and stole my money?

I committed to a simple, but very difficult journey. I stood up for myself, confronted him and pressed charges.

Life is hard, and it doesn’t seem to get any easier. People hurt us and that will never stop. There will always be something that sucks, but don’t let that scare you from living your life.


Shawn White Blog

Words of Hope

Discovering Hope

An Update

An Update

An update you say? Yes an update indeed! I hope the universe has been treating you well. Perhaps you’ve gone on an adventure or found a favorite color. My preferred flavor of color is purple or blue, especially in the cold, cylindrical variety.

As of late I’ve been working on all sorts of projects. Right now, I am focusing a lot of my effort into my podcast. Though in the past I made attempts at creating audio material, this time I’ve found my footing. In addition to the podcast I am writing the Advocacy for Hope book. This guidebook will be partially autobiographical and informative. Before the release of this book I will release a series on my podcast relating to its content. The final mentionable is a writing club for people with cancer. The goal is to explore Hope through community and friendship. I look forward to sharing more of the details with you in the coming weeks.

I hope that you have a wonderful week, health and peace to you and yours!

Shawn White

Night Time Slumber

Night Time Slumber

Night Time Slumber

Night Time Slumber

It is late and some time ago I laid down for a deep rest, searching for a delightful night time slumber. Perhaps the universe wants me to be awake, maybe it has a desire for me to explore my feels and release them into the ether. As I sit here my body eases away the pains, thoughts and concerns. Occasionally an acidic burn slides up my throat or my tummy whimpers from the prickly pains in my belly. There are moments when I notice the challenge of swallowing, the fleeting ghosting ghosts or the burning smell that flutters up my nose.

Peace finds me as I explore these feels and the feelings from them. Though my body zones may be on the waters of discomfort I have brought a surf board to slide and ride across them. I imagine the warm air wrap around me as I navigate the board atop powerful waves. It is invigorating, rejuvenating and incredible. 

I love life and the cup that comes with it. It is never half full or half empty, it is complete and wrapped with infinite awe. 

Through our cup and the liquid life therein we have our hopes and dreams, our adventures and plans. Many leave this cup on the counter, refusing to take even one sip. Others take a drink here and there. I choose to devour the contents, gulping it down and savoring every drop. 

Drinking life like this can be painful, it means you must accept all of the goods with the bads. You have to embrace the smiles with the frowns. Be ready to explore the most beautiful dreams in our night time slumber, sleeping away in our soft beds. And… be willing give up many nights to the morning.

Tree of Life

Crying Pain – Reflections

crying

Crying Pain

In the middle of the night I called one of my closet friends. A true friend, one I consider a brother. My friend drove me to the hospital, quickly we got a room and my pain inched forward in intensity. At its peak I was crying, clutching my chest and losing awareness of anything other than the agony.

I had no fear, I knew only pain.  All my energy focused to meditate, succumb and manage the pain. It so was incredible, a pain equal to the greatest pain I’d ever felt.

With each slight breath, my world was hammered with impossible pain. Every single breath was the worst imaginable. I gasped for air, moments I tried to hold my breath to find a reprieve, but a deep breath followed and my hell increased to something beyond imagination. Pressing my hand into my pec muscles I tried to massage near the pain, perhaps interrupt its signal, as much as I tried, it did nothing, the pain was deep, under my ribs, around my lungs.

It was intense, so terrible, but I can only imagine my friend’s horror, watching hopelessly as I writhed in agony. The torture of wanting to do anything, but knowing he could do nothing.

Another friend visited, fed me some biscuits and gravy and drove me home. We had a heart to heart, one with love and hope.

After getting home I discovered shut eye. When my eyes closed, nightmares snuck into the darkness of my eyes, hunted my heart and captured my soul. Some terrors were of the hospital, the island of my ex, and horrors in between. The dreams were full of screams, fear and pain, cries and pleas.

I woke to a softened lung pain, a light scream. As the specters of my sleep slipped away I discovered a path. One that led me to a door, as I opened it, it transformed how I see myself. Finally I see the good things in myself that I’ve always searched for in others. My heart parts are gooey, glowing with golden light of love, peace and harmony. A place where even the dark parts are lit with the divine light of heavenly energy. 

Links

Harmony – Tree of Life

Never-ending Journey – Relfections

Never-ending Journey

Never-ending Journey

In a world of regret, of sadness and shame we are prone to experiencing a myriad of pain before we find our way. Each way is a road leading to another path of pain. It is a never-ending journey, but with each step we discover more about how to be, how to live, how to exist.

I am not the master of anything, or a jack of all, I am just a person looking inward and trying to express himself outward. I love you, even though we may have never met, I love you and you are loved. If I don’t like you, or you don’t like me, I still love you. Perhaps we crossed each other, I wronged you or you wronged me, no matter I still love you.

We all do things that we might not be proud of, we all have emotions and we express them. No matter what we may believe we are never the master of our own emotions. Eventually they will escape from their crate and run amuck.

It is a matter of knowing which emotions we want to let free, which we need to take for a walk and which we need to leave in a crate. The “bad” ones need to be crate trained, fed a certain kind of diet, but ultimately, loved the same as any other.

Life is love, perhaps not beyond the boundaries of the world I know, but beyond what I know, I cannot know.

We cannot be in each other’s vulnerable moments, but at these times, search for love, search for goodness. Accept nothing less than those who will love us unconditionally. Who will accept us for who we are because they love everything about us.

We may at times feel powerful, but when we desire to have power over another, we are focused on the “me” instead of the we. We are love, we are life, we are the journey.

Links

Equal and Peaceful – Poem

Sight Seeing

Sight Seeing

Sight Seeing

Sight Seeing

Sight seeing in New Orleans was wonderful, I’ve never been to such an exotic and adventurous city.  It was a haunting place at night and a gorgeous land at day. My lady friend and I traveled and explored as much as we could.  We had far too many experiences than I could ever commit to paper.

I remember walking through the French Quarter marveling at all the energy. As we walked the streets the urge to record what I observed was strong.  I chose to fight the desire, I fought the urge to sit and built a narrative, I chose to battle it because if I wrote what was happening, I wouldn’t be living it. I’ve always believed that the greatest component to telling a great story is knowing how to live one first.  We can write till our hands bleed and our knuckles burst, but if we don’t know what it means to live, no one will believe the lives we’re trying to tell.

Sight Seeing

Throughout my life, I never understood the obsession people had for this city, but after spending only a week there I now understand.

On one of the first days we were there we went to a beautiful park in Kenner. We saw all sorts of exotic creatures, ducks, cranes, geese, black swans, seagulls and pelicans. We watched a friendly otter swim in a lake and smiled at all the head bobbing turtles.  There was even a fancy, limply floating fish sleepily swimming sideways!

Sight Seeing

You didn’t even have to look closely to see all sorts of duck families, from fake mallards to real farm ducks. There were fun patterned duckies of all sorts of colors. Some looked all crazy like and chirped like squeaky birds, others had the red faces like buzzards. The park was amazing, easily the most beautiful one I’ve ever seen. It was hot like summer and bright like July. We walked, walked and walked.  It was a magnificent day to share many wonderful moments with my very special lady and the whimsical wildlife.

Sight Seeing

Links

Nola

Emotional Land Mine

Emotional Land Mine – Reflections

Emotional Land Mine

Emotional Land Mine

Recently I’ve taken a few moments to reflect on the events of my life. There is so much I’ve forgotten. At certain instances its feels like I stepped on an emotional land mine and was blown to pieces.

Somehow like a ghost I’ve been able to collect many of those parts and reassemble my spirit. The idea reminds me of Dracula from the Castlevania series. With that said the mind is a beautiful machine. Its able to cope and navigate through life. When we neglect it though shit really hits the fan and everything is covered in a layer of unfortunate crap.

The somehow part is a bit misleading, I actually used social media resources to stitch back the events of those days. There were all sorts of crazy and stupid shit that I said during that time, I’m sorry if I hurt your feelings during those moments, but I don’t regret my actions. They had to happen, if they didn’t I wouldn’t have had the fuel to attempt suicide, or commit myself to a mental health facility.

I am a firm believer that change happens every second. If we want to have an influence over our lives we have to know who we want to be. To do that we have to know who we are, unfortunately we only know who we were moments ago. With enough introspection we can establish a pretty good framework, a blue print to understand how we work.

Once we have this framework established we can reach for the stars.

We can decide who it is we want to be and the kind of people we desire to surround ourselves with. In the coming week or so I will be releasing my philosophy on the Tree of Life, the Tolerance Barrel and the Spectrum. In it I will go into great detail about our dreams, adventures and plans. I will discuss our lives and how positive and negative energy plays into our role in life and how art is the catalyst to true change.

I hope to provide a sketch of how I see the world, so that perhaps you may begin drawing out your own. No system is perfect, each requires adaptations or unique systems to match the needs of everyone, one person at a time.

Links

Memories – Reflections

 

Sensation

Birthday Sensation – Reflections

Birthday Sensation

There are no moments in life that are worthwhile to waste.

There are times when we might lose something special to us. This special something could be a someone, it could be a thing, perhaps even a sensation. Treasure the significance of your moments, because the things you value most, those elements of your life you take for granted, can be snatched away at any second.

On Monday, the eight of May, my beautiful birthday, I felt the roots of acceptance crawl back into my life. I could feel peace flow into the trunk of my Tree of Life. For once in a great many months I was free.  Free from incessant torture and endless misery, liberated and ready to take a fresh breath of air.

Even more than than my release from spiritual prison, I could once again feel my hands. I could experience the sensation of my finger tip’s touch. My face felt like my face and my lips like my lips. Oh my god I can not express how wonderful that felt. For months I have gone without sensation in these places, and now on this day, this significant day of my birth, I was having a rebirth. Reborn with a new outlook and the ability to experience the world for what it is, instead of what a blanket of numbness can interpret.

Links

Memories – Reflections

 

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

Confirmed

Confirmed

I mentioned the only reason I could embrace the moment was because the hospital confirmed they received all my medical records.  So, what does a confirmation mean if the doctor never looks at what you sent them?  The answer is nothing.

Unfortunately, personal advocacy means you must continuously put yourself center stage.  Effectively you must be the most annoying person in the world if you want to avoid being left behind.

It’s pretty scary.

A more detailed Conversation

So, what medical information did I gain from this?  Not much.

While in New Orleans I spent a great deal of time laying inside of fancy, expensive devices.  I drank interesting fluids after being injected with all sorts of mysterious serums.  It was great to get these tests done, if I were smarter, stronger, perhaps if I had more wisdom I would’ve asked why couldn’t I do these tests back in Saint Louis.

While in New Orleans I was only able to read the results of one scan.  The report indicated that there was something described as a mass effect in my liver.  Specifically, it read: “Right lung has been resected and the right thoracic space is largely filled by liver and a trace amount of fluid at the right lung apex. The liver produces some moderate mass effect on the right side of the heart.”

When I read it on the report I felt anxious, perhaps it meant nothing, perhaps it meant something.  Any news feels like bad news, that’s the nature of Hope the Mouse.  I looked up what mass effect was, mostly it brought up video game stuff and references to cranial tumors.  That wasn’t a fun thing to read, but instead of worrying about it, I kissed my girlfriend and returned to the fun adventure of exploring New Orleans.

Talking with the Specialist

When I met with the doctor I asked him if he had reviewed my scans and tests.  He said no.  I asked him if he would like to see my medical records and the scans that I brought and he said yes.  This was the first time that he read over my medical history.

Once he opened the file I asked him if my liver had moved up into my thoracic cavity and he quickly said no.  Then I asked him what a mass effect was, he didn’t respond so I pressed the question again, this time handing him the report from the scan I got in New Orleans.

He took the paper and then continued to stare at the Ga 68 scan on the computer screen.  Many moments were spent as he complained about the quality of the scan, saying the file was organized in a way he wasn’t used to.

I asked him again what the mass effect of my liver might be.  In response, he said he thought that it was most likely my heart pressing up against my liver. He went onto say that there was a chance I might have to have surgery in the future if it became a problem.

The most important piece of information he gave me was to have my port removed.

Conclusion

What was the medical value of this journey?  I need to have my port removed.  There is a mass effect in my liver.  I have a surgical screw in my hip.  I learned that if you want to become your own personal advocate, everything has to be confirmed.

Links

Personal Advocacy Resources

Big Pile of Disappointment

Was it really a big Pile of Disappointment?

Last time I spoke a lot about how my trip to see the NET specialist was a big pile of disappointment.  I hoped that with that doctor it would be a moment I could ask him questions only a specialist could answer.  Unfortunately, I discovered he hadn’t reviewed my records and so my appointment with him was just a few notches above worthless.

With that said this was supposed to be the visit, and in certain ways it was.  The value of this visit was that I learned more about personal advocacy.  In the conclusion, I said: “Seeing a specialist isn’t enough.  You must take it to the next level, you must be the squeaky wheel, you must make noise! If you want to receive what you need, you have to talk loudly and walk with heavy steps.”

There were many valuable lessons to be discovered here.  The following is a step by step summary of what I learned from this experience.

Setting up an appointment with a new doctor

  1. Confirm: When you send your tests, scans, slides and medical history to a new doctor call and speak to them frequently until they have confirmed the arrival of your information.  How can your doctor read it if its not there?
  2. Confirm: Once they have your records call and speak with them frequently until they have confirmed that the doctor has reviewed your files and the pathologist has reviewed your slides.  How can your doctor help you if they know nothing about you?
  3. Confirm: Have them confirm in writing that your insurance is in network if they say that it is. How do you know you can afford this?
  4. Schedule: Once these conditions have been met, now you have the green light to move forward to schedule an appointment.

What happened to me?

  1. Yes! I’m in great hands!I sent my tests, scans, slides and medical history to the doctor’s office.  They confirmed it arrived.
  2. What?: When I arrived, my doctor said he never reviewed any of my medical records.  He said that the pathologists were still looking at my slides. Ask yourself, what is the purpose of seeing this doctor if they know nothing about you?
  3. How am I supposed to pay for this?: The hospital, front desk, and doctor’s office all told me that my visit was in network.  After the visit, they are now telling me that it was out of network and they expect me to pay a ridiculous amount of money for the services they claim to have provided.
  4. What happened?: I scheduled my appointment with the doctor before these requirements were met and I left with no valuable information.

Scans, Tests and Labs?

If the prospective doctor is ordering scans, tests and labs why are they wanting you to do them in their city?  If you must travel why don’t they have you do them locally where they might be cheaper and easier to access?

All in all, I learned valuable stuff, but at a very hefty cost.  The information I gained almost nothing directly to with my cancer.  There might have been some, lets dig into the big pile of the stuff that was discussed.

Links

Personal Advocacy

Memories – Refections

Memories

Memories are something we take for granted. They are little creatures that run around doing their things, reminding us of all the moments which made us who we are. They tell us who should be special and why.

As I return to clarity I can feel my mind settle. A cloud of dust is being blown away and I’m able to once again see these little creatures. I’m reminded of the time when I was living at my sister’s house. There were small moments of peace in the hell of my recovery. Simple pleasures where I felt myself slowly falling… hoping that it was more than just a moment. It was a time of many firsts and it would continue to be a time of firsts.

I look back and ponder the significance of their misplacement. There are lessons in everything. Why would the world take those creatures from me? What was the lesson I’m supposed to learn? It was the medicine who stole those early months from me. Why is the universe starting to give them back?

The summer was hot and the sun was bright. I remember slowly ambling down the road, my side hurting and my head full of drugs. So many confessions were made and reality felt so unreal. I lost sight of tomorrow, all I could know was now. Those times were so terrible. The people who came to me, held me and guided me through. These are and were so important, why did they go away?

It itches my eyes with tears to think about it.

These memories would have been of greater value to me when my Malfunction returned. Perhaps it could have pushed away shame and reminded me I do have a place to share my pain.

I think about the jail bed, the ramp bed and the loneliness at night. The loneliness that was filled with the company of someone who cared. I can see and feel the memories like never before. The tears I feel, the sadness is  real, it isn’t earth shattering sorrow, burning anger or depression, instead its love. I am sad because those moments conjure memories of love and softness.

Perhaps these memories were waiting to find me once I had clarity. A clean vision of life, where I could be reminded that not everything was terrible. That in the cold darkness there were glimmering angels of light.

It feels good to feel, to feel the right way.

To feel love, in a loving way.

Links

The lady in the isle of Hope

edge

Edges – Dreams

Edges

edges

I had a dream last night, it was a rare breed, so positive and memorable. Its been a time since I’ve been able to remember a dream.  I’d like to share it with you.

It was a dark sky, one slightly filled with all the stars in the sky, yet empty and blank.  Somehow, like dreams do it made sense, the existence of an impossible duality. Perhaps the presence of two things that should not exist together was a gentle nudge of acceptance.  A return to old ways, an acceptance of the things I cannot change.

I was standing at the edge of something, a series of yellow stones turned sideways.  This was really high, beyond the edge of these side way stones I could see until the land stopped. The edge was pointing toward the sky like a pyramid. I was on one side and someone was on the other.  There was a presence of profound emotion, like their emotions manifested like a ghost trying to posses me.  They raised their hand offering me something, I looked down at their hand then back into their eyes. I stood there thinking and thinking and thinking.

Their eyes watered but no tears fell, they were too strong to cry, too resistant.

They desired to have control even in a moment when no control could be had. There was regret within them and it was strong. They wanted to release it and undo the things they had done.

There was a gift in their hand, it wasn’t a sudden manifestation, nor was it there before. Dreams have a certain way of just being, just having stuff in it that make sense and this was one of those moments.  They offered the gift to me, it was the same offering they were trying to give with their pleading eyes.

I had some ideas about what this meant when I woke up.  Even as I slept I believed I understood the significance of what the dream meant.  Perhaps later in reflection I will change my mind to its meaning.  Today I feel like it wasn’t anyone else, even though it felt like someone else was visiting my dreams.

Something tells me it was me, a former version of myself pleading with my current self. Maybe it is a future self pleading with me now. Maybe I am letting go of another life and moving into another.  All I know is it enhanced my heart when I woke up, it was uplifting, clean and pure.

Links

Damaged – Reflections

 

Disappointment

Disappointment

Disappointment

Disappointment

When the world is up in the air and nothing is certain but uncertainty, the experience of life becomes troublesome.  I was nervous before leaving Saint Louis for New Orleans.  There were so many pieces of the puzzle without guarantee.  I decided to make the best of whatever happened, I was going to New Orleans, I was going to live in the moment, no matter what happened.

The only concrete reality I had to work with was that the hospital confirmed they received all the medical records, scans and tumor slides I sent them.  This fact, this reality allowed me to relax and discover the anchor I needed to live in the moment.

A Conversation

When I spoke with the specialist I was excited, there was nervousness in my breath.  This increased as our conversation progressed, the more I asked the more uncomfortable I became.  It didn’t take long before I realized I had invested more into this doctor than the doctor had invested in me.

I inquired about my scans, labs and slides.  I thought he was going to show them to me, explain the findings and share the results, but none of that happened.  It was like he hadn’t read any of the reports.  My tummy churned, there was a certain pain inside of me, my gut was telling me he hadn’t read anything about my medical history.  So, I asked, and the answer was no.  He hadn’t read any of the information that was sent to his office from Saint Louis.  He hadn’t looked at any of the scans, tests or reports.  The doctor told me he wasn’t even aware that I had a Ga 68.

Thank goodness I had my medical history in my hand.  Had I not of brought my Ga 68 scan and other records he would have known absolutely nothing about my medical history.

It was heart breaking to sit beside this specialist, a person I had traveled hundreds of miles to see, only to be let down again.

Conclusion

What was the value of this journey?  New Orleans was a beautiful place, I have never been to such an enchanting land.  The significance of this trip was in the magical moments I spent with someone very special to me.  It was in the lessons I learned and the accomplishment of being my own health advocate.

Seeing a specialist isn’t enough.  You must take it to the next level, you must be the squeaky wheel, you must make noise! If you want to receive what you need, you have to talk loudly and walk with heavy steps.

Links

Big Pile of Disappointment

Confirmed

 

Wonderful

Wonderful – Reflections

Wonderful

Wonderful

You can see that I have all sorts of things to say, new ways to interpret reality, reflections that illuminate old avenues.  The real question is though, how do I feel?  Strip away all the things and processes and really share my feelings.

How do I feel?  Well the answer is actually quite simple.  I feel better than I have for over two years.

For the longest time a darkness has loomed over me, following me, biting at my flesh and drinking my blood.  This disturbing presence has been eating me alive for as long as I can remember and now it is gone.

After all of this, I finally feel like me.  I have reclaimed my heart and fed my soul. I feel wonderful, genuine and true.  It is a magnificence that is calm and good. The kind that is healthy and right.

Sadness still comes and goes, but its the normal kind sadness. The joy isn’t like lightning and its power no longer sets me on fire.  The cold chill of sadness no longer chills me to the bone.  Finally my life is mine and I can set my eyes on the future, achieving my planes, adventuring and basking in the magic of my dreams.

I feel good and healthy.  I feel right.  I feel balanced, harmonious and wonderful.

Links

Moments – Reflections

neuroendocrine specialist

Neuroendocrine Specialist

neuroendocrine specialist

Neuroendocrine Specialist

A few weeks ago, I journeyed to the mystical land of New Orleans.  I went there to meet with a neuroendocrine specialist.  This was supposed to be the visit, the one that would give me a leg up on the future.

We got to the office a little before eight o’clock.  My appointment was scheduled for 8am.  The doors were locked, for a moment I thought perhaps we were there at the wrong time.  After hanging out in the hallway for a bit, a staff person arrived and unlocked the door. The waiting room was decorated with all sorts of zebra patterns, it seemed like a fun looking place.  There was a door that led into what appeared to be an infusion room.  As I was looking around the receptionist had me sign some stuff then handed me paper work to fill it out.  There was an abundance of things to fill out.

So much to fill out I don’t know how they expected me to get it all done.  Ultimately, I prioritized what was important to me, which was getting the answers I drove all this way to get.  After a few minutes, we were moved into the examination room, in hindsight I felt rushed.  The vibe was like the staff or the doctor had some place to be and were running behind.

The doctor was friendly, he seemed like he was interested in listening and answering questions.  But the red flags began very early in our conversation, the first being that he didn’t know that we had just driven hundreds of miles for this appointment.  Another was he hadn’t looked at my medical history, my prior tests and scans or even my surgical notes.

In what I hoped would be the opportunity to explore my disease with a specialist became yet another unfortunate experience.  Another unfortunate moment stacked onto a pile of stinky disappointments.

Links

Disappointment

moments

Moments – Reflections

Moments

moments

I committed myself to CenterPoint Hospital and it was the best decision I’ve ever made.  It wasn’t the best of moments, but it glowed with my purpose, the purpose of personal advocacy.  Personal Advocacy transcends the body and the mind, it encompasses both perfection and harmony.  If we want to fight for our health we must fight for our mind.

My journey will be time stamped by my birthday on Monday, May the eighth.  This has been the hardest year of my life.  It dwarfs every experience, every hardship, every moment that came before it.  I’ve never experienced the plethora of experiences as I have this year.  From a poorly constructed village, to the burnt-out husk, I rose from the ashes as a phoenix.

This year I’ve learned so much in exchange for so much.

There is no way anyone could predict the person I would become by this coming birthday.

My journey began coughing up blood at urgent care.  My friend told me to go to the hospital, it is from this moment that my cancer journey started.  From there I would see a pulmonologist, then a thoracic surgeon, have my lung removed and move onto chemotherapy.  I would be abused by a caretaker, lose a close friend, begin a personal advocacy quest, couple with a wonderful woman, share in terrible heart break and attempt suicide.  At the end of all this I’d rise as a phoenix from the ashes becoming a new man with an old spirit.

I regret nothing, I blame no one and I cherish every moment.  There were moments of terror and others of incredible love, all of them are important to me.  I am the man I am today because of these events, though I endured pain beyond my wildest imagination I wouldn’t trade any of it for anything.

Links

Damaged – Reflections

ochsner

Ochsner

ochsner

Ochsner

We traveled from Saint Louis to New Orleans and stayed at the American Cancer Society’s Hope Lodge.  There is no doubt this place was a godsend, this trip would’ve been impossible without it.

On the first day of scans we tried to find the hospital by following the GPS.  Unfortunately, the city had two streets with almost the exact same name and so we were taken to the other side of the city.  It was frustrating to say the least but we managed to make it to the hospital to get a whole truck load of scans.

Inside of the car it was cool and comfortable, but stepping outside into that muggy air was incredible.  It was strange to go from quasi spring/winter air to the summer heat.  There were stingy and buzzy bugs flying this way and that.  We walked in and registered, they told us to follow the fancy blue line.  It was the guide that would take us to the testing area.  I felt like it was like the yellow brick road, only a different color and much thinner.

They gave me a cool salmon colored bracelet.  It was that fancy stretchy tape stuff, they used it to hold the IV in my arm in place because I have a latex allergy.  Then they gave me my octreotide dose and sent me back into the waiting room to hangout.  For the next hour and a half, I drank pool water flavored beverages until it was time to get tests.   I had some conversations with the locals.  I was attempting to ascertain some good spots to eat fooduals.

Finally, the time came and I headed into the special room and laid on my back in the machine forever.  I surprise myself by the extent that I’ve gotten used to these devices. For the rest of this day and the next I spent a great deal of time in these tubes chilling out to the sound of clicks and pops.  All in all, the time spent getting the scans was quite pleasant.  If there is one thing I must say about Ochsner is that their employees are very friendly.  The hospital was quite pleasant.

Links

New Orleans

Neuroendocrine Specialist

Expectations

 

NOLA – Personal Journey

NOLA

The moon light sliced through the clouds speckling the landscape with a silvery glow. Rain dripped from the sky coating the windshield with a layer that sloshed against the wipers.  The ground was slick and my eyes were tired, the combination made the drive taxing as we drove over the enormous bridge.  In the distance, limbless trees reached for the sky behind them was an eerie blanket of crimson. As we drove into the city the haunting vibe increased, the spirit of the air was strange for my tired and wary heart.

We drove down a lonely road, it looked run down and haunted with shadows. Following the directions of the GPS to a dimly lit multi-level building, we pulled through a narrow drive way and parked in the roundabout in front of the Hope Lodge.  Our bodies were fatigued and our muscles hurt, we were finally glad to arrive.

When we woke up the next morning the vibe was literally a difference of night and day.  It was warm and comfortable; the atmosphere was loving and the heart of the land was good.  The contrast of the land’s spirit was unlike anything I’d ever experienced.

We spent all the time we could exploring and enjoy the beauty of New Orleans.  Though the swampy, bridge saturated city was a fun adventure the air was thick and hot.  Each breath was such a challenge to breath I found myself panting for air most moments.

Though the NET doctor failed to meet my expectations I have the wonderful memories of this enchanting city.

Links

If you would like to continue reading about my NOLA adventures, or would like to read more about personal advocacy feel free to click on one of these links.

New Orleans

Hope Lodge

Sight Seeing

Ochsner

Damaged – Reflections

damaged

Damaged

My ceiling fan creates a scraping sound as it turns followed by an occasional clink.  The curtain creepily twists and dances to the movement of a subtle wind.  A cold steel vibe swirls and floats through the room.  It’s not the wind, maybe a hallucination from exhaustion, but it’s enough to stir my heart.  Damaged and half painted my ceiling is a water mark of the many things damaged and broken in my life.

Leaning against the wall I attempted to get comfortable.  I felt a sensation that was like many nights after the surgery, it felt like rocks were digging into my back.  This night was a far date from the surgery and was a pain far worse than what I experienced in the jail bed (a bunkbed made of metal) or the ramp bed (a bed Ino broke).  I was without a guide, without a light to see passed the foggy horizon.

My shoulder had been hurting for days.  Tonight, the pain became brilliant, it had blossomed across my back like a beautiful flower.  As it bloomed, the pain stretched to greater depths deep into the roots of my soul.  The numbness crawled deep into my nerves chewing and gnawing until my insides began to scream.

The pillows were slipping between the bed and the wall, making it an uncomfortable sitting arrangement.  I could’ve gotten up, I was uncomfortable, but I wasn’t there to relax, I was there to die.

On my left was an open bottle of Ativan, to my right was a six pack of flavored alcohol.  I chatted on Facebook here and there, every few moments I ate a pill.  These things are easier when you take your time.  Thats what I tell myself, I think it helps fight the survival mechanism, but maybe it’s the opposite.  Once you’re passed the seventh pill the rest just happens.  Its like a flowing river, until all the water has filled a lake, a peaceful, uneventful lake.

I don’t know what happened next, I don’t remember.

My friend got to me before I could drink the alcohol.  I don’t know how fast it would have been, but the breathing would have been over.

Hospital Time

It doesn’t matter where I stayed, because in the state of mind I was in, anywhere would have been hell.  It sounds terrible but I should have drunk the beer, it would have been my cool-aid of choice.

I’m not good when I’m alone and confused especially in a hospital. When I woke up alone, I couldn’t remember trying to kill myself, maybe I did, maybe it just depended on the time.  I didn’t know what was going on, or why it was happening, nothing was familiar.  The room looked like a double wide trailer.  I demanded to know why I was there, maybe they answered, I don’t know.  Nothing made any sense.

In my head, I remember standing on the bed yelling, I doubt that happened.

There is a distinct sensory and visual memory of me ripping out my IV while yelling, when that happened the staff lost their shit. If that really happened then it makes sense why I remember screaming and crying in the fetal position.  There was an old lady lying beside me, comforting me, rubbing my head and arm. I don’t know if that was a person or something they injected me with.

…There is no doubt that I was a terrible guest.

 What now?

I’ve done a few unfortunate things recently, I tried to kill myself, I believe that’s a good indicator that I’m in over my head. You’re not in a good mental state when that happens I think.  I’m so tired of hospitals, but I’m falling apart.  The right thing to do is commit myself.  I’m going to be checking myself into Center Pointe  Hospital tonight.

Links

Clog – Reflections

 

Clog – Relfections

Clog

clog

My heart, like a leaky faucet has a way of sneaking up on me.  Subtly and steadily I could hear the water dripping but I never looked at the clog.  No, that’s not true.  I knew there was a clog, I just didn’t do anything about it.  There were feelings hidden behind my chest, I knew that, I just didn’t know how many.

When the light turned on to see the drip I saw the sink was so full of water it was overflowing onto the floor.   It was shocking, frantically I tried to mop it up, throwing down towels and scooping the water with my hands.

There was so much more than I thought.  It wasn’t a sink, it was a swamp, a bog at the edge of the abyss.  I was trying to drain a swamp with a few hand towels. There was so much, how could I stand against so much? I tried, I tried to do something.  I needed to get rid of all that water, but I couldn’t.  I was frightened, I had to get away, I had to run, so I ran, but there was nowhere to go.

I got into my car, and drove, I drove to Kansas City.  Once I got there I cried.  I cried because no matter where I go, there I am.  There is nowhere to go, nowhere to run or hide.  There is no escape.

The journey of cancer is a horrible one.  With incredible twists and terrible turns, it’s a roller-coaster too tall for everyone.  I’ve hated every roller-coaster I’ve ever ridden; the Great Cancer Adventure is no exception.

Even with fancy carnival rides we can’t get off till the ride is finished.  This ride has proven no different and though I hated the ride, at least I had someone to take a few rounds around the track with me.  Someone to help me forget just how scary the twists and turns can get.

Surrounded by thick bog stink and swamp mud clinging to my clothes I look to the future. I can start swimming into the abyss or climb back on these wretched rails.  Right now I just want to take a breath and rest.

Links

This post is tied to the feelings I posted on my Facebook page