Remember it’s fun to swim and dance with glee, cause when you do it sets you free. Truth be told, if I may be so bold, being silly makes me smile. It gets rid of the waste by making my day taste sweet and tart as it warms my heart. It is especially great when its late and we feel old and cold. We can scrape off the stress as we are impressed by the marvelous melodies of our magnificent moments. So as you sit, sleep or stand wiggle your feet like you are listening to a band. Shift your hips from side to side like the electric slide. Laugh, love and live your life to the fullest. Use your clever mind and pull joy’s lever and surely you will have fun forever!
Most times when I breathe it hurts, like a knuckly knot tying off the life to my lung. Sometimes when I breathe it feels light, gentle and soft like a soothing sheet cuddling us asleep. Tonight as I lay in bed waiting to dance my sleepy time tunes my heart bounces behind my chest. It’s a rhythmic lullaby, a soothing story, a ballad of better times. The air is easy and for a change I do not feel queasy. My heart feels loved and I’m not being shoved. I feel good, great and even better now I am in a sleepy state. This is a marvelous moment, a comfortable time and a sign of a soothing scene that is coming to me in the land of dreams.
It’s a water day. On weekends when I feel ill. The water helps calm me. Like a massage against my skin, a warmth to my muscles. It makes me want to sleep away the last few hours before the sun rises. To wake and return to life refreshed. That is the life, one where I feel blessed.
When you called me weak… it took me to my peek and placed a smile on my face. I was empowered by your disgrace, it reminded me of the challenges I have faced. It was the most invigorating insult I’ve ever received.
So thank you, for your delightful words for though at the time you intended for me to feel like a pile of turds it inspired me to embrace all of my words.
What makes you feel right? Is it a dark scary night? A woeful wind? A roaring rain?
Do you feel at peace when your heart is teased, when you can’t find release, perhaps when your bound in bondage?
Are you free when you can’t see or are in agony?
What is harmony? Is it a moment of dancing with glee? Perhaps when you discover your destiny? Is it a moment when you can simply be?
Can you reach inside yourself and find the things you need? Are you a circle that is complete? Are you ready to be set free?
Are you ready to breath?
Let go of the dark and dreary. Lighten your load, leave your abode and soothe your scene by setting yourself free. Invigorate your insides with the sight and sounds of the wonderful wilderness. Poke around a few paths, bathe in the shine of the sun and have lots of fun. Find a few skulls, a fancy feather and discover a dreamy day of delight.
Mother nature is brutal and beautiful; she is the life taker and giver; and she loves all her children equally. Every living creature, meteorological phenomenon and catastrophe is a part of nature.
Forgive the events you cannot control and make the best of the ones you can.
Sometimes we are coated in oil and everything is slippery and sloppy. Our inside zones burn and boil and desperately we seek to soak our souls in the soil. We reach out our hand to hold someone close, but often we are cloistered and closed away.
One day you will shake off that slippery, slick, sloppy sludge and sing a song of silly smiles. You will reach into your inside zones and touch your heart bone. You will no longer toil and desperately seek to soak your soul in the soil, because you will be happy, harmonious and peaceful.
The world can be a dark and dreary place and sometimes it can feel like we are constantly washing the muck off our face. Our lips turn sour becoming an upside down crown as it forms into a frown. Our hopes and dreams fade, we feel lost, sad and sorry. As our soul is saturated with dismay, our nerves begin to fray, so we sit and wait for the end of days.
There comes a time when we tire of the night and we rise. With a beaten and battered soul we muster all our might, attempting to fight the waste of this dark and dreary place. We punch, kick and scream, doing everything mean, but in the end we settle back in our seat, because once again we are beat.
We stand again, this time driving forward, pushing with all our strength, attempting to master the night, to defeat its dreariness and darkness. But, no matter how hard we push, now matter how strong we are, it is stronger. It defeats us because we cannot master the dark snippets of our soul.
Many of us never learn this lesson and we continually flex and force until we collapse under the strength of our own will. Each time we try to become the master, our life becomes a disaster, as we walk waywardly into an unwelcome wilderness. It takes a lot of walking, but eventually we learn we cannot master our emotions, we cannot make our heart zones cease to be. Until we can see how to achieve harmony we will never find the ease we need.
You are an amazing creature filled with so many magical moments and feels. Tend to your heart feels with loving care, find a purpose in their presence and love each for their beautiful uniqueness.
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.
- Ronny Allen
- NET Alliance
- Sunny Susan Website
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.
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.
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.
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?
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.
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.
With each test of pain, I’ve discovered new ways to explain all the gifts I’ve gained. I hope my hardships will help you have the highest quality of life you can live. The cancer journey is terrible, everyone wearing this badge of bad knows this, but in our journey, we are literally held down by a NET. Often our net is invisible making it impossible to see how we are anchored to the ground. To fight our cancer, we must have the right people on our side, who can see the invisible net and can sever its strings. I have learned we must surround ourselves with experts who can spot and treat our specific condition. We might not be able to escape our confinement, but we can learn to love the life we live and make the most of our moments. With the right people on our team we can treasure our time. What kind of expert do we need for our NET journey? We need a team of passionate, dedicated and science-based experts. Consider having the following doctors on your all star team.
- Primary Care Physician (PCP)
If you have NET cancer, you must have an Neuroendocrine specialist on your team. I can not stress this enough. The sooner you find one, the healthier life your will live. Of course, that raises a few questions. How do I find one? How do I know they are a NET specialist? How will I determine if they are right for me?
The Neuroendocrine Cancer Awareness Network is the best resource available to us. They know what its like to wear the badge of bad and be tied down under this nasty net of cancer. This amazing organization will help you find a local support community, guide you through the education process and aid you in finding a NET specialist.
Life’s Beautiful Cacophony
The Journey Begins
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 never–ending 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.