ncan patient conference

NCAN Patient Conference

Our disease is a hard sea to sail, its dark and the waters are rough. NCAN’s patient conferences are the lighthouses we need to see. The opportunities are vast and have great potential. The world’s best are at your disposal. Complicated questions are answered, resources are revealed and for a week you can feel wonderful as you meet others who walk the same road. If you have Neuroendocrine cancer you need to attend an NCAN patient conference.

These conferences create opportunities, open minds and save lives. Knowledge is power, especially when it comes to our cancer journey. If you don’t have the right information you will walk down the wrong path, get pushed down dark roads and be robed of your quality and quantity of life.

While at my first patient conference I learned so much about the disease, the community and how ignorance has hurt me. It opened doorways to talk with the world’s leading doctors and nurses specializing in Neuroendocrine cancer. The event created opportunities that would not have been possible otherwise. I was educated about symptom reducing treatment, life saving possibilities and so much more!

If you have Neuroendocrine cancer these conferences will give you options, open doorways and grant you the tools to travel this terrible road. When I went to the NCAN patient conference in Las Vegas it was a transformative experience.  When I met others sailing the sea of this terrible disease, it parted the clouds, opened the sky and warmed my skin to some sunshine.

Everywhere I turned I saw care givers, companions and cancer patients who know how the cancer serpent can change us. How it often steals a certain something, perhaps our purpose and peace, or the golden glowy goodness that helped us feel free.

It is more than magnificent lectures, learning and literature, it is a doorway to a welcoming world. A break from the fight, a massage of the soul and a sense that we have a place to go.

It is an opportunity for patients to listen, learn and share. A time to receive a reprieve from the horrors of this disease. It is a weekend to be surrounded by doctors, nurses and pharmaceutical leaders who care. To be educated by those who know how this illness grabs, takes and swallows us like a snake. Coiling around us twisting and squeezing till we’ve had all we can take. It is a place where we are welcomed by compassionate, empathetic people educated enough to help us with our hurt.

In your time here you will see a sight that will set you free. If you are sitting in the shadows, lost on a road and feel you have no place to go, look to the light and find your hope. At this event there are others who have walked your path, who can light the road and show you home.

Neuroendocrine Cancer Awareness Network

Shawn White Blog

Living With Cancer

NET Cancer

Caught in a Net? Research your way out!

When it comes to our health and especially neuroendocrine cancer, the best thing we can do is research. Our health care providers may be educated and valuable, but they are not always educated in the ways we value. The NET community has amassed a collection of valuable resources. These hardworking souls have built a framework for the rest of us to survive. In this article I will be sharing many of the resources available to us. Its easy to get lost when we are in the thick of the storm, but we must be vigilant, work hard and press our force of will to become the eye within the whirlwind.

If you have NET cancer you know how hard this journey can be.   Ignorance is shoveled into our ears time and again. To make the most of our moments we must muster the energy to purge our lives of this BS.  We must overcome the misinformation of unqualified doctors, charlatans and alternative medicine gurus.

What is the value of research? How does it help me?

The more we know, the better off we are. Throughout our lives we’ve been told ignorance is bliss, but you and I know this to be false. Imagine how many lives could be saved if others with this terrible disease knew more about their cancer at the start of this journey? If I had even a fraction of my knowledge when first diagnosed I would have walked a completely different path. I would have understood why a NET specialist was essential, I would’ve been more powerful and demanded excellence from my health care providers. Clearly, I cannot travel back in time to change the events in my life, and even if I could, I wouldn’t. It sounds utterly insane, but getting cancer was the best thing to ever happen to me. Since I was a youngster I have been searching for a purpose, and now I have one. My purpose is to help you avoid the pitfalls in this terrible journey, by casting a light on the many holes to reduce the horrors you must face. If I get to help just one person, then my pain had a purpose, and that gives me peace.

So what role does research have in all of this?

Research has been the eternal flame in my terrible journey. Knowledge is the true guiding light in life. If we want to make the most of our moments, we must have the tools to make it terrific. It can be daunting, learning more about our agony can be incapacitating, but if we don’t face the facts we will never have the life we want to live.

Are you going to teach me how to research?

No, that is beyond the scope of this article. I will leave that to people more qualified than I. However, I will guide you in the direction of collecting the science-based data you deserve. First, we are going to navigate some interesting waters. Once you get passed the perils of pseudoscience and propaganda we can begin delving deeper.

What do I mean by pseudoscience and propaganda? The alternative medicine movement is mostly based on superstition and prescientific ideas. If we want quantifiable and healthy results from the treatment options we select, we must choose the ones proven to be repeatable with the scrutiny of double-blind testing.  We must learn how the scientific method functions and apply it to how we interact with our doctors and those who are seeking to make money from our misfortune.

I want you to live the highest quality of life you can, the best way to do that is through the continual pursuit of science-based knowledge.

Cure for Cancer?

Why isn’t there a cure for cancer? I bet Big Pharma has the cure, but they don’t want to share it with us cause there is no money in it!

If a pharmaceutical company was able to develop a single cure for cancer they would be so rich, they would become a world power. The idea of a company having the cure for cancer and not releasing it is ludicrous. Lets start with the most basic point: Cancer is complicated, we need to stop talking about cancer like there could be a single cure for it.  There is no one cure for cancer, because there is more than one cancer.

Now lets address this big pharma term. Some time ago I ran across a special little MEME that read:

a patient cured is a customer lost – Big Pharma

Critical thought teaches us to acknowledge our bias, to set it aside, to be fair and treat others for their qualities, rather than the actions of people unrelated to them. It is unfair to apply blanket opinions on groups of people. When these blanket opinions are applied they create a stereotype which sets an atmosphere of unfairness.

Each pharmaceutical company is an organization comprised of dozens, hundreds, even thousands of employees. There are dozens of pharmaceutical companies, how fair is it to say these people are concerned only with making money? Not all people are the same, and not all companies are the same.

Instead of making blanket statements about groups of people we don’t know,  we need to research each company and judge them individually. Just like people, the ideology of one pharmaceutical company will change, one to the next.

Curing a disease is a lot more complicated than simply waving money at it. However, without money research doesn’t happen. People need money to live, and if they aren’t being paid to do the research, the research isn’t being done. Cancer treatment often hurts a lot, some treatment options can have terrible side effects on the body, so we need to test it over long periods of time to make sure it doesn’t horrifically hurt or kill people before the cancer does. I know it can be frustrating waiting for a cure, we feel hopeless, but if we invite every miracle cure into our lives, we won’t have a life to live.

There are potential cures ready to be shared, why wont they share them with the public? People are dying, some chance is better than no chance right?

No,  if every supposed discovery is made available to the public, there wouldn’t be significant advancements in medicine.  Lots of resources would be wasted implementing worthless and dangerous measures.  Just because an idea is proven to work once in vitro, doesn’t mean in is going to work in real life.  The idea needs to tested time and again to make sure it is safe and helps treat the disease or its symptoms.

But some life is better than no life, a terminally ill person is going to die anyways, why deny them an opportunity to live?

To put it simply, quality of life is more important than quantity. What if this untested cancer treatment has the side effect of permanent blindness, deafness, paralysis and chronic pain? Would the trade off  be worth  living the rest of your life in a horrific prison that is your body?

I don’t think so. Scientific discoveries must be proven to work. This is for our protection. It is not so they can squeeze more money out of the public. Testing their drugs takes even more money, and these pharmaceutical companies have already spent a fortune developing the drug in the first place. They have to pay another fortune to prove it is a benefit to their target population.

Well this drug had an informative video showing it can blow up cancer cells with bubbles. It said it could save lives, we need to be saving lives!

Absolutely, but we can’t save lives by getting people to drink mystery cool aid. Recently I had a  conversation with someone  about this situation. They read an article about how a treatment could kill cancer in vitro by blowing it up with bubbles. Immediately my mind when to work to see what they were talking about. I found this article at first and read it. I wasn’t satisfied though, I wanted to see if this was real and if so where the research was now.  In July of 2017 it was retracted.  Imagine if we spent the resources to implement this discovery, only to find out the result could not be replicated? Imagine if your mother, father, son or daughter sought out this treatment and died because it had no effect on their cancer? Willful ignorance and desperation kills people. Testing the efficacy of a drug is how we ensure the best medicine is made available to the public.

Net Resources

 


Discovering Hope

Shawn White Blog

Caught in a Net 5

 

shyness social anxiety know

Caught in a NET? Shyness, Social Anxiety and finding the right doctor

Finding a new doctor is like dating. We get to know who they are, what they believe and how they approach life. We want to make sure we are compatible and can spend a large chunk of our lives together. This doesn’t mean we are crossing professional boundaries, quite the opposite, this approach enables us to look deeper into who they are as a practitioner by learning about their professional accomplishments. While in their office we must believe they are listening to us, that we are safe under their care and they know enough to help. We need to make sure they are the best person for the job. Just like dating, we want to pair with this person for a long time, perhaps even the rest of our life, so it is important to make sure this doctor is the right choice.

How do I know if I have the right doctor for me? You must get to know yourself and discover what is important to you. You must set and enforce personal boundaries and become an unstoppable force.

I think I can take some time to get to know myself, but I’m not good with personal boundaries and I don’t think I could ever be an unstoppable force. How can I do this? Where do I even start? You start right now and every moment thereafter. Force of will is a tempered tool folded and pounded to perfection. Every day we have opportunities to become the better version of ourselves, seize those moments and move forward.

There was a time in my life when I was shy, I had a hard time talking or standing up to others. If I had to walk my NET cancer journey when I was shy, this would have been impossible. But don’t fret, just because you are shy now, doesn’t mean you will always be.

Shyness and Social Anxiety

Shyness, it sucks.  That’s how I would describe it in three words. People are often surprised when I tell them I used to be very shy.  Sometimes they ask how I overcame it.  Well here is the first step of my fancy story.

In my mid-twenties, just after my mother had passed I was at a local dinner sitting with a couple friends waiting for our food.  A few booths over was a group of young ladies, one in particular caught my eye, I was entranced by her beauty and I wanted to meet her.  Unfortunately, I was frozen in fear and glued to my seat.  “What is going on?” I thought to myself. I couldn’t muster a reason why I felt this, why I was so afraid? If she was so intimidating why would I be attracted to her?

After several moments of being teased by my friends for not approaching her, I rose from my seat and walked to her table.  My hands were shaking, and my heart was pounding in my chest.  When I opened my mouth to speak, all my charm fled, and I found myself completely unable to articulate my words.  I stood there at the end of the table for several moments, I could feel their judgement piercing my soul.  In a burst of what little confidence I had, I tried to introduce myself to her, a moment passed, and they were all quiet so I walked back to my seat.

I could hear them talking about me, describing how my hands were shaking, and how weird I seemed. As I sat there eating my meal, I reflected over the moment, and I came to the conclusion that I must have appeared completely insane.

At first, I saw this as a failure, but then I realized it was a success.   I was unable to bridge my introduction into a conversation, but I was able to overcome the fear of talking to her.  I set out to do something, and I did it.  It was from this I was able to build my confidence.  I spent some time thinking about how I could eliminate my social anxiety, and over several years of pushing myself I was able to become the social butterfly I am today.

Overcoming anything requires force of will, but we are simply unable to eliminate our hardships in one fell swoop.  We must dedicate ourselves to a purpose and stick to it.  My social anxiety didn’t disappear in this moment. I had to work on it daily.  One of the first methods I used to fight my shyness was to smile and say hello to every person I saw.  When they didn’t smile back or say hello, I copped by saying to myself they were the ones missing out.

If you are a person like myself who loves people and wants to have as many great friendships as you can, then challenge yourself, talk to others. Eventually you will realize there is nothing to fear.  Most likely the person you want to talk to was wants to speak to you as well.

How does this help me with talking to my doctor and learning if they are right for me? In the beginning it may be difficult to directly talk to your doctor, but each time you stand your ground the better your footing becomes. Talking to a stranger can be daunting and by all accounts your doctor is a stranger. To complicate matters more we tend to deify their standing leading to a vast power differential. If you start making small changes in your life, these baby steps will improve your force of will and the effectiveness of your medical care. Be strong, know you’re amazing and make the most of your moments.


Discovering Hope

Shawn White Blog

Caught in a Net? 4

NCAN

Caught in a NET? You have 26 seconds to talk to your doctor

What do you mean by 26 seconds? I thought the appointment was fifteen minutes! Think back to the time you’ve spent in a doctor’s office. Once they walk you through the door to the sterile quiet office the nurse asks you the standard questions and tip taps her fingers against the key board. Then after some time the doctor enters, a few pleasantries are shared and then they ask you “So whats going on?”

This is your time to explain you condition. Since you have a maximum of 26 seconds you must have your ducks in order. If you don’t you might be leaving with regretful feelings, so make your seconds count. As human creatures our attention span is only so long, to make the most of these moments, be prepared and stick to facts.

To make these seconds more valuable make sure you write the doctor an email explaining your situation. If you would like more information on what to include in this email, click here.  You should also write up a worksheet to guide you in the meeting. On this sheet have a bullet list of the important questions you want to ask. You will also want to bring a copy of this email in case your doctor has not read it yet.

How do I prepare for these 26 seconds?

Go over your medical history and records to find the information you believe is most important and write them down.

Document the signs and symptoms you’ve experienced, if you have enough time before your doctor’s appointment create a log of these conditions to determine patterns. Try to figure out if any of your lifestyle choices are contributing to your health issues.

Create a worksheet with bullet points detailing the most important aspects of your condition.

Rehearse with friends and family to see if your message is coming across correctly. Get out your smart phone and record yourself talking to see if you can see how to improve your communication skills.


Discovering Hope

Caught in a Net?  5

Caught in a Net? 3 

NCAN

medical history records

Caught in a NET? Help your doctor help you!

We could have the best doctor, the perfect notes and the most amazing pitch in the world, but if our team doesn’t have our medical records, they won’t have the tools to help us. Doctors have a wealth of knowledge, but without our records they can’t help us how we need to be helped.

What does my doctor need from me?

A clearly presented history– Our doctor must be able to easily read our medical history. Your medical records may be collected from the hospitals and offices you’ve visited. This step may take some time, because you will include all the most important data in this booklet. Once completed send it to your doctor via email and bring a hard copy of it to your next appointment.

  • When writing this booklet detail your medical history in chronological order
  • What are some of the signs and symptoms of your disease? How long are they present (duration)? What degree of discomfort do they cause? How frequent do they manifest?
  • What factors cause these signs and symptoms to trigger, amplify, reduce. Have you discovered anything that suppresses these experiences and if so what are they?

A detailed pathology report– When sending your medical history to your doctor they will also need your pathology reports. Be sure to send all of the following:

  •                What was the location of the primary metastasis?
  •                How differentiated are the tumor/s?
  •                What is the grade of the tumor/s?
  •                Be sure to send the % of Ki-67 & Mitotic rate.

Make the most of these moments– While organizing this information take some time to read it. If you see something you don’t understand write it down and look it up. The best way we can learn about our disease is to discover how it personally affects us.


Discovering Hope

Caught in a Net 2

Caught In a Net 4

NCAN

Caught in a NET? How do I find a doctor?

There are no skeleton keys in cancer. Our journey isn’t a console game, we can’t enter a cheat code to speed through a stage and beat a boss. Instead we need a variety of keys to meet our needs. We must build and lead an all-star multidisciplinary team. How do I build this team? Identifying what we need is a big step, now it’s time to find the right people to fill those roles. Here are some useful techniques to ensure you land in the right place after your multidisciplinary leap.

If you have Neuroendocrine cancer, you must have a NET specialist.

If you don’t have one, I strongly suggest you contact your local NCAN chapter for support or visit the NCAN website for assistance. After you’ve contacted NCAN and have a few doctors in mind, how do you determine if they are right for you?

Selecting a doctor can be a troubling experience, where do we even start?

Our road is dark, so here are some tools to light your path, the last thing you want is to be blind, being led by the blind.

How do I choose my doctor?

People are unique and amazing, we all have special skills setting us apart from everyone else. Doctors are people and its important to remember that. They have personalities and approaches to life that may be different than yours. To know whether a doctor is right for you, you must know what you need and who you are.

Step 1

Know your own personality: Take some time to get to know yourself. What is important to you, how do you communicate, how do you like to be spoken to? Are you shy, is it easy to share, how easily are you intimidated? Look at the company you keep, what kind of people do you surround yourself with and what are their personality types?

Know what you want: What are your expectations? Are you looking for someone to run the show for you or share in the decision making? How much information are you looking for, do you want the minimum to get by or an in-depth understanding of your disease?

 

Step 2

Not all doctors are the same. It is important to have a doctor compatible with your personality, religious beliefs and ethics. Our health care providers are people, remember that, to receive quality care we need to feel like our needs are being met. If your doctor doesn’t understand your values, they will never understand what you need.

You should also be concerned with their background. What have they accomplished? What is their level of knowledge, what kind of training and experience have they had? Look online to see what they have written, get to know who they are through their literature.

Talk to people who have seen them a few times. Join your local NCAN support chapter and ask its members about the doctors they use. First hand information is a great place to start, but it should not be the deciding factor on which doctor you choose. Reputation doesn’t mean skill. Anecdotal evidence will lead you back down a dark path, it’s a pitfall of the blind leading the blind.

 

Step 3

Now we have made it this far its time to merge the results of step 1 and 2. When you see your doctor open your mind and listen, have your thoughts organized and make short concise statements. The goal is to optimize the communication between you and your doctor. Consider recording what you have to say and listening to it before your appointment.

You are not obligated to stay with this doctor. If you feel uncomfortable or leave not understanding something, it is ok to find someone else. If you choose them to be your doctor you should never feel obligated to be loyal or faithful to them. If you are ever unsatisfied with your doctor, get a second, third or forth opinion.

Once you have found the doctor you trust, stick with them and continually work to make the most of your conversations.


Caught in a Net? 1

Caught in a Net? 3

Discovering Hope

NCAN

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

Chemotherapy – Personal Advocacy

Chemotherapy

What are you willing to Experience?

When I began my journey I wasn’t told what to expect.  Sure the nurse practitioner sat me down and rattled off a series of symptoms, but no one shared with me its true gravity. Hollywood talks a lot about what it is like, but all fail to showcase how terrible the road of  chemotherapy truly is.

The excitement of a Hollywood team would have been an improvement over my experience. Detached and not involved would be how I would describe my oncology team’s role in my treatment.  I do not feel like I was treated like a person while in their care.

Cancer was bad, surgery was horrible, but the chemotherapy and my oncology team made the experience unimaginable. No one ever asked me what I was willing to experience or lose.  No one suggested a care plan that would prepare me for what I was about to live through.  I had no advocate, no mentor, no guide.

That hardship made me the Man I today

Traveling the united states I met others who experienced my very same journey and discovered they too struggled through the same horrors I faced.  It opened my eyes to the number of patients who have lost their life or quality of life due to negligence, inattentiveness and ignorance.

When I started my journey I was told by my thoracic surgeon to avoid researching my disease. In fact every member of my health care team suggested I turn the computer off, close the books and listen only to them. This created a terrible path I now know is quite common for the kind of cancer I have.

When I first met my oncologist it felt good to meet a health care provider excited about my disease. I took that as a good sign. Instead it turned out he was aroused by the idea of treating someone with a rare cancer, but not interested in researching it.

The first doctor appointment I had with him I asked, are there any specialists for this disease, is there any research and are any trials available. His answer was no, no, no. Later I discovered every one of his answers were false.

I want you to know there are answers out there. You have options and there is a good chance the doctor you have right now might not be the right doctor for you. If you have a general oncologist, find a specialist for your disease. To live the longest and highest quality of life you must have the best, don’t bet your life on a losing horse.

Get a third opinion, research, build a support network and find others who are suffering with your disease. Not all the insight they give you may be valuable, but the comradery is. Everyone needs a network of friends, some of the best friends you can have in this journey are others sharing the same perilous path.

Treatment

This is a basic primer, an explanation of my experience. Its intent is to help you gain a greater understanding of the experience. My journey might not be an indication of what you will face, but the more we know about what could happen, the more we can prepare for what might happen. You’ve already been blindsided by cancer, don’t get knocked off guard by the side effects of your medicine.

What can I expect to feel?

Nausea

When someone tells you that you’re going to experience nausea, they are going to fail to adequately describe what it might be like.

Imagine you need to throw up every moment of every day while going through treatment. If your cycles cover five months, your going to be sick for six.  The nausea is all encompassing, permeating every facet of your existence.  I had moments where I was taking a shower and I would suddenly throw up, while I was eating I would throw up, while I was driving down the road, while I was being intimate with my woman, while I was sleeping, I would throw up.  Imagine having the flu every day, every single day.  Once you have done that you will have just a fraction of an understanding what it means to have nausea while going through chemo.

Neuropathy

When someone tells you that you’re going to experience neuropathy, they are going to fail to adequately describe what it might be like.

Have you ever had the sensation of your hand or foot falling asleep?  Perhaps you’ve had some numbness in your extremities?  Maybe you’ve had moments where it felt like someone was stabbing you with a knife?  Maybe you’ve even been touched with something super hot?  Imagine all of these sensations, imagine them alternating from one to next in a friendly game of musical chairs. This is neuropathy, it starts off light but it is noticeable.  I told my nurses and doctor about it, but they didn’t care. To them the side effect wasn’t that big of deal.

Would these sensations be that big of a deal to you?  Maybe not, but let me translate them to real life situations.  Do you enjoy kissing?  Being intimate with your  significant other?  Do you enjoy the sensation of being touched?  Maybe you like how warm water feels against your skin?  Would you say that you like to feel textures, food, clothing or… well anything at all.  If you enjoy these experiences you must be willing to let them go.  Sure the doctor may say this temporary, but sometimes they are permanent.  Are you alright with losing the ability to feel the world for the rest of your life?

Infertility

Well for some this might not seem like that big of deal, but for most it is.  There is no experience like this one.  Maybe you don’t have any kids, perhaps you would’ve never had any anyways, but it should be your choice.  Are you willing to never be able to have kids?  It is important that you take some time to think about this before you are pushed into treatment.

Hair Loss

When someone tells you that you’re going to experience hair loss, they are going to fail to adequately describe what it might be like.

To wake up in the morning and see that your pillow is covered with so much of your hair it looks like a cat has just shed on it.  To run your hands through it and watch clumps of it come loose between your finger tips.

So much of your identity is wrapped up in your hair.  Its not just the hair on your head though.  Everything goes.  When my hair started falling out of my head it was traumatic, but when my body hair, eye brows and eye lashes started falling out it was horrific.

Of course this is just a temporary side effect, but I have read about some chemo drugs where it wasn’t. Before you decide to start treatment, ask yourself if the loss of your hair is worth it.

Fatigue

When someone tells you you’re going to experience fatigue, they are going to fail to adequately describe what it might be like.

I think the way it was described to me was that I was going to be really tired. Tired… well that doesn’t do chemo fatigue justice.  If I were to describe it I would say imagine pouring glue into your muscles while wrapping ropes of exhaustion around your bones.  Take those ropes and pull them taught, then tug on them back and forth so they would grind against your bones and tear against your muscles.  Imagine a sensation akin to your flesh ripping as you stand or walk. An exhaustion that keeps you out of breath,  causes incredible pain when you try to move and makes every activity unbearable.

I’d say it is similar to the body sensations of being up for days and days.  Its the sick lethargy you get when you have the flu or are incredibly depressed.  Its an inescapable, never ending horror.

Conclusion

These are just a few of the experiences you may encounter while going through treatment. You need to know if you are willing to endure them.  More importantly you need to know why you are enduring them. What benefits does your doctor say you will gain from their suggested treatment?   Ask him to provide the data and research supporting his claims this is the best course of action for you. If it exists he needs to show it to you. Finally, how much pain are you willing to pay to live, and how much life are you buying with the pain your spending?

You are the only one who can answer these questions.   The choice you make needs to be yours and yours alone.  You are the only one who has to live with the side effects of the treatment, no one else can take that horror from you.  Live for you, live for your reasons.  If you don’t want to do chemo, don’t do chemo.  If you want to do chemo, do it for you.

Shawn White Blog

Cancer Coach 

The Placebo of Ernest the Life Coach

NCAN

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