Charlatans

Charlatans MLMs and con artists

Charlatans, MLMs and con artists

Watch out for the monsters lurking in the shadows. Be wary of those who whisper secret remedies able to cure your maladies. Remember good intentions spoken by sweet people can be poison. They may wish love, health and happiness, but if they have been bitten by the snake and poisoned with its oil, they will harm you.

Tearing their teeth through your skin they will pump venom into your blood. At first you will not notice the harm that is being done. The stars you see will trick you into believing their remedies are setting you free. Eventually you will see how dizzy you have become.

For some this is a terrible problem, because with the wrong treatment their life will be done. Often the weak and wounded have a window to take treatment, once that opportunity passes so too may their chances.

Charlatans love the sick and vulnerable

People suffering the horrible hell of cancer and other terrible illnesses are often targeted by monsters of various breeds. MLMs, charlatans and con artists blind themselves to the villainy of their awful actions by cannibalizing what little these innocent people have to live with.

The healthy monster does not understand how frightening the throb of finality can be. All they know is simple pleasures and little fears. They cannot fathom the horror of death knocking at their door.

These monsters attack the hope of the hurting by screaming and lashing out against science. They demand equal treatment for their make believe medicines, lying, cheating and taking advantage of the desperate and hurting. The MLMs, charlatans and con artists help themselves to what little money, time and life these people have left.

Take a stand against the Con Man

When I witness these horrid things I have to take a breath, step back and meditate on the sight I am seeing. It is a setting that makes me sad, especially since I know there is so much it. My insides burn and boil as I return from the tranquility of my inside zones. My soul hurts because I know there is too much of it. I know if I tried to stop all of it my mind would be driven mad.

I would lose my sanity because it is not the role of one man. It should be the goal of the community. As people we ought to vilify these monsters for what they are. Those who prey on the sick and dying are disgusting. They are a blight on our beautiful world.

Empathy is the key that will set our World Free

I believe many of our problems can be solved with empathy. So few take the time to imagine the plight of another. Far too often people want to focus on how terrible their own life is, thinking others can’t possibly understand. This opens a terrible door, it is the gateway to becoming a monster, an absolutely shitty human being.

I’m going to let you in on a secret. The truth is, life hurts. It hurts really bad and for most of us it only gets worse. My life has been pretty damn terrible and most days I feel horrible. Its a challenge to breathe, I can’t feel huge areas of my body, it burns and hurts in ways I can’t describe. I have no health insurance and I have cancer. It would be easy to say life sucks, cause in many ways it does.

With that said, my pain is no worse than yours. Pain is a subjective experience. Though we may use a 10 scale, we don’t experience each number the same way.

Instead of being incapacitated by the pain I use it to be the better version of myself. I know what it is like to hurt and I know others hurt too. Its a reminder to always empathize and be fair to my fellow humans. It is the ultimate levy against becoming a shitty person.

You can use it too. We can all use empathy to think about how our actions or statements would feel if said or done to us.

Treat others how You want to be Treated

If you had a serious illness would you want to be bombarded with expensive, unproven methods claiming to cure or control your disease? When faced with the cold hard truth you want what works. Science saves lives and personal advocacy will protect you from the monsters of the world.

So when you see the MLMs, charlatans and con artists selling snake oil speak up. There is a good chance you are saving someone from a terrible amount of suffering.

Discovering Hope

Shawn White Blog

Memes aren’t Facts

Nioxin vs Monat vs Rogaine 

The Life Coach

NCAN

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

alkaline diet

How effective is the Alkaline Diet? Should I have any concerns?

Do you believe an alkaline diet or a sodium bicarbonate infusion is an effective way to treat cancer? Are you considering an alkaline diet? Are you doing it because you want to live a healthy life, perhaps to fight and prevent disease? If that is the case then adopting the alkaline diet would be a step in the wrong direction. It does not cure, treat or affect disease in any positive way.

If you’ve read any of the pH Miracle books or are considering adopting an alkaline diet, I strongly suggest researching its inventor.

The Father of the Alkaline Diet, Robert O. Young and author of the “pH Miracle” books claims acid is responsible for all disease and the cure is alkalinization. Preying on the fear and desperation of the terminally ill he made millions of dollars with his diet plans, books and treatments. In 2014 he was charged with conspiring to practice medicine without a license and multiple counts of grand theft. As of 2017 he was found guilty of practicing medicine without a license and was sentenced to over three years in prison.[1]

Taking calcium has no effect on blood acidity. You could pour an entire bottle of calcium pills down your gullet and it would have no effect what-so-ever on your blood acidity. Sure it may neutralize some of the acidity of your stomach, but homeostasis would revert it back within a few minutes.[2]

Robert O Young “treated” seriously ill people with unproven and potentially dangerous procedures without a medical licence. Under his “care” many have paid the price of their life in addition to thousands of dollars for ineffective treatments.

In 2012 Naima Houder-Mohammed paid Young $77,000 for treatment, where he infused sodium bicarbonate (baking soda) into her blood stream. She was treated by him for three months, during which her health worsened until she died. [3]

When we are desperate we often take great leaps of faith in the pursuit of survival. It is important we are armed with the right information to protect ourselves from charlatans and snake oil salesmen.

If it is too good to be true, it probably is, the alkaline diet and the treatments of Robert O Young is a great example of this. Unfortunately, some believe the alkaline diet is the magical cure for everything. Like any magical cure, its effects are placebo at best. Its a nonsense idea created by the convicted felon Robert O Young. This supposed expert on biology and diet is not a microbiologist, hematologist, medical doctor, naturopathic doctor or trained scientist. In fact he doesn’t have any post high-school degrees what-so-ever[4].

Many seriously ill people have lost thousands of dollars and their lives due to Young’s pseudo-science treatments. If you are considering a new diet, consult your licensed health care provider and thoroughly research your options before committing to a new lifestyle.


Research

Shawn White Blog

The Placebo

Orthomolecular What?

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

 

Orthomolecular Therapy, Mega Vitamin Dietary Supplements

Orthomolecular Therapy, Mega Vitamins and Dietary Supplements might be bad for me?

Food is our first medicine, but it is not our only medicine. In fact once we are sick there is little an apple, a steak or a pile of multi-vitamins can do. Aren’t dietary supplements good for me?  Some claim multivitamins, diet pills and energy boosters are beneficial. However, according to the New England Journal of Medicine an estimated 23,000 people are admitted to the ER each year after ingesting a dietary supplement.[1] There are many dietary supplements on the market. Some do nothing like those created from homeopathy, or next to nothing with marginal risks like the alkaline diet. However, there are others, like mega vitamins that pose a real threat with no benefit. Sometimes the use of megavitamins is called orthomolecular therapy, orthomolecular medicine, molecular therapy and nutritional therapy. If you are considering an orthomolecular option for your dietary needs, I strongly suggest you explore a science-based medical option first.

Orthomolecular therapy is a pseudoscience. Like others of its type  it sneaks into our diet because it guises itself as food while claiming to be effective as regulated medicine. With so many responsibilities and hardships on our plate it is difficult to research everything. We live busy lives and it can be challenging to lead a healthy one, but it is especially important to research the claims of anyone trying to sell you dietary supplements. There is a chance you’re paying a lot of money for nothing, or simply shelling out hard cash to hurt yourself.

So, what is Orthomolecular therapy?

In 1973 Linus Pauling and David Hawkins (a supporter of Applied Kinesiology) published the book: Orthomolecular Psychiatry. It defined the term orthomolecular as the practice of using substances normally present in the body to prevent and treat disease. Pauling and Hawkins claimed nutritional psychiatry could treat diseases like schizophrenia, the common cold and cancer, because they believed these diseases were caused by nutrient deficiencies.[2]

Pauling rallied the public to believe mega doses of vitamin C could be used to prevent colds and even fight cancer. Yet to this day there is no science-based evidence supporting this claim. Using beta-carotene, vitamins A and E to treat cancer has been found to do the opposite, often resulting in an increased risk of dying from cancer. [3] It has even been found  that vitamin C has no effect at all in the treatment of cancer. [4]  Sloan Kettering Cancer Center says: “Do  not take vitamin C if you are a cancer patient undergoing radiation therapy or chemotherapy. Vitamin C may interfere with these treatments and lessen their effect.” They continue by stating: most large-scale trials did not find vitamin C supplements useful in preventing cancers.”[5]

Are supplements ever good for me?

In specific instances, your medical doctor may prescribe dietary supplements. When I say medical doctor, this does not include acupuncturists, chiropractors and other naturopaths. If you want proven medical benefit consult those with a science-based medical degree that you trust. For help finding the right doctor click here. The link details specific information for people with NET cancer, but it may be boiled down into any medical specialist.

Can you give me an idea of who might need dietary supplements? Scurvy, pellagra and beriberi are diseases caused by nutrient deficiency. Though rare in the United States and Canada these deficiencies do occur. A doctor may adjust a patient’s diet or prescribe supplements to treat these illnesses. Food is the most effective method of treatment because it’s less toxic and leads to fewer nutritional imbalances than supplements. [6] 

Today the supplement industry encourages consumers to add Multivitamin/mineral pills to their diet to treat nutrient deficiencies, prevent chronic disease and promote health. However according to a study in 2006 Multivitamin/mineral pills did not reduce the risk of chronic disease.[7]

There are specific instances when someone might need a supplement, these include, [6]

  • Those who suffer with nutrient deficiencies or consume less than 1,600 calories a day.
  • Vegetarians, vegans and older adults with atrophic gastritis may require vitamin B12.
  • People who are lactose intolerant or don’t consume enough dairy may require calcium.
  • Infants may need vitamin D, iron and fluoride.
  • Pregnant women may require folate and iron.
  • Elderly individuals may need vitamin B12 and vitamin D.
  • People with heavily pigmented skin or those who do not consume enough milk may require vitamin D.
  • Anyone with a condition that interferes with the intake, absorption, metabolism or excretion of nutrients.
  • Individuals taking medicines that interfere with the body’s use of nutrients.

People who should not take supplements are, [6]

  • Men and postmenopausal women should not take iron supplements.
  • Smokers should avoid beta-carotene supplements given that high doses have been associated with increased lung cancer and mortality.
  • Postmenopausal women should not take vitamin A supplements.
  • Surgery patients should note take vitamin E, because it acts like a blood thinner.


  • [1] <http://www.nejm.org/doi/full/10.1056/NEJMsa1504267>
  • [2] <http://skepdic.com/orthomolecular.html>
  • [3] <https://www.theguardian.com/society/2004/oct/01/medicineandhealth.lifeandhealth1>
  • [4] <https://www.theguardian.com/science/2008/nov/17/cancer-vitamins-risk-study-science>
  • [5] <https://www.mskcc.org/cancer-care/integrative-medicine/herbs/vitamin-c>
  • [6] <page 321-332, Rose, Nedah, editor. Understanding Nutrition. Wadsworth, Cengage Learning, 2013>
  • [7] <Huang H-Y, Caballero B, Chang S, Alberg AJ, Semba RD, Schneyer C, et al. Multivitamin/Mineral Supplements and Prevention of Chronic Disease. Evidence Report/Technology Assessment No. 139. (Prepared by The Johns Hopkins University Evidence-based Practice Center under Contract No. 290-02-0018). AHRQ Publication No. 06-E012. Rockville, MD: Agency for Healthcare Research and Quality. May 2006.>

Shawn White Blog

Research

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

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

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

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

Hope the Mouse

Hope the Mouse

Hope the Mouse

So much our time is focused on cancer that we often become it.  Every time I have a test or a scan my heart shutters and my nerves shake.  I’ve grown so accustomed to bad news that good news has become the bad.  Hope the Mouse is a representation of my fear, anxiety and guilt when it comes to the idea of overcoming cancer.

I dread the day when all of this is over (if it ever is).  The reason is because it’s like dying, when its over I will have to begin a new life, change is hard enough for most, starting over is another matter entirely.  When I was first diagnosed with cancer I experienced the death of my old life, once again when I discovered I still had cancer and again once cancer became my life.  These moments are rough and destructive to the soul, they hurt and often never stop hurting.

Without cancer I’m afraid I won’t have the same drive and purpose.  I really want to be a part of a cause that makes the world a better place. The thought of losing traction of my dream is a nightmare.  Having a singular purpose can be overwhelming, but it is so much more rewarding than the underwhelming life I once had.

I’m afraid of being cured, I’m afraid of not having cancer, I’m afraid of surviving.

These are the thoughts that plague me when I think about hope.  They’re the feelings that haunt me.  I want to live a long happy life, but the thought of Hope the Mouse is terrifying, and when I see her it makes me want to scream in terror.

Hope is not your enemy

I know that Hope isn’t my enemy.  She is a valuable tool that pushes me forward every day.  I may be afraid of her at times, but without her I can’t experience the experience of life.  Without this little mouse I wouldn’t know how to ask why, I wouldn’t have the force of will to continue to walk and I wouldn’t have the heart to help others.

Hope is the true engine of my existence.  My force of will determines who I am. With these two powerful elements I can overcome anything. When, not ifWhen I overcome this cancer I will continue to help others.  Ultimately it is what is on the inside that determines who we are and what we have to offer.  On the inside, I have Hope, the cute, yet terrifying mouse.  She has guided me, continues to guide me and will always guide me.

Links

If you would like to continue your reading journey consider some of these fine links.  I’m sure you will find something that will fill your fancy.

Cancer – Personal Advocacy

Caretakers – Personal Advocacy

Abuse – Personal Advocacy

 

weekend

Weekend – A New Universe of Cancer

A Good Weekend

It was a fine weekend, I ate some tasty foods, had some good laughs and spent time with a handful of my favorite people.  Comfortable sleep was had and great fun was in abundance. All in all the last several days have been swell.

On Friday I met with a nutritionist, she was a lovely human being, truly an angel. An angel who was educated and informed.  She spoke to me like a person.  I can’t tell you how wonderful it was to sit down with her, ask her questions and have them answered.

I also met with a neurologist.  That doctor was another anomaly, he, like the nutritionist took the time to listen and answer my questions. Even if he couldn’t solve my problems, or provide a definitive answer.  He treated me with respect, he seemed like a genuine person, the kind of person who cares about others.

The weekend was great, it was a refreshing and invigorating break.

Links

If you would like to look back in time and read some of the older posts of a New Universe of Cancer feel free to click on one of these links.

A New Universe of Cancer

Growth – A New Universe of Cancer

A Cancer Journey – You are more than your cancer

If it would fill you will super joy to read about my journey through personal advocacy click on one of these fancy links.

CSO – Personal Advocacy

Cancer – Personal Advocacy

If you would like to read about some of the feels of chemotherapy then one of these links would be a great place to start.

The Flavor of Food

Neuropathy

Caretakers – Personal Advocacy

Caretakers

Your Caretakers should be taking care of you, you shouldn’t be taking care of them.  

caretakers

The cartoon above was an actual conversation between he and I.

I would like to introduce you to Ino, he was my caretaker.   Chemotherapy was terrible, but he made the experience nearly unbearable.  He was supposed to keep the house clean, prepare my meals, keep the cat litter box clean and provide me with transportation.  In exchange for this, his rent was free.

Introduction

I used to have a problem setting and enforcing boundaries.  For most of my life others have stomped and walked all over me.  Lovers, friends, caretakers and especially family members have violated my boundaries.

Its taken some time but I have learned how to establish effective boundaries. They are set when our pain surpasses our tolerance.  It is the moment when we are overwhelmed and we decide to take a stand.

This is the story of Ino, and this is how he motivated me to set and enforce my boundaries.  I am embarrassed to write this, but it is such a great example of how people can take advantage of you while you are going through chemo.

The Comfort of My Bed

As I laid in bed I could hear my cat meow incessantly through the door.  His soft white paws tapped in a maddening pattern.  In the living room I heard the scratching click of Ino’s cell phone as he texted.  Every minute a terrible ring blasted from his phone throughout the house.

Beside me was a partially filled bucket of vomit.  My head ached and my stomach spun, I felt the food in my belly slowly sneak its way up my throat. I was so tired, the chemo was sucking all the life from me.  Ropes of exhaustion tightly twisted around my bones, tearing at my muscles.

On my side I felt a stab, the sensation of a searing hot knife slicing through my flesh.  Around that pain was nothing, an absence of feeling, like pins and needles. It felt like my back was wrapped in a blanket of numbness, a void, a nothingness except for the pressure of a rock.  The rock was the hardness of a bone, a thing that was my scapula.

My chest felt like my hair was being pulled from the inside out.  My skin stung and my hair ached.  There was a roving pain in my flesh, it hurt and throbbed like a chemical fire.

It was hard to breath, even more than normal.  My coughing made my chest muscles scream.  I had a weight on my sternum and liquid under it.  My lung felt swollen and engorged, fat and bloated.  I would cough then retch.

Strolling Into My Living Room

I rolled out from the covers and placed my feet to floor.  My toes were numb like rubber and my joints hurt as I stood.  The muscles of my legs felt like they were filled with glue as they moved.  Slowly I ambled into the living room.

Though the air purifiers roared they were overcome by the stench that permeated the house.  It was rotten and fetid, soaking everything with the smell of death.  The garbage can was filled to the floor with waste and the kitchen sink was a mountain of dishes.

A cloud of flies hovered and flew and the sour smell of cat feces was thick.  It had been weeks since I was able to get my caretaker Ino to clean the cat litter box, to do the dishes, to clean the house.  I looked over at him as I passed to enter the kitchen.  He sat, staring down, clicking his fingers against the shiny screen of his phone.

I stood within the center of the kitchen and looked around at the insanity. Turning toward him I asked if he would help me do the dishes.  His reply was unbelievable, he said he couldn’t help me because doing the dishes gave him flashbacks.  Then he went back to texting on his phone.

I had enough, I couldn’t live in this hell.  This was the moment my barrel had been filled, pouring over the brim.  It was the moment my pain crossed the threshold of my tolerance. With my body in agony I did the dishes, I cleaned the house and he sat and watched as I did his job around him.  I had to call my friend Tony to ask him to come and clean out the cat litter box, because Ino refused to.

Links

If you would like to read or listen to a poem related to INO go ahead and click this link.

For more about personal advocacy click on these links

Power Advocacy Podcast

Experience of Treatment – Personal Advocacy

Your Caretakers should be taking care of you, you shouldn’t be taking care of them.

 

 

Growth – A New Universe of Cancer

growth
Growth

A New Universe of Cancer is about growth.  We have to see a problem before we can question it.  After we have asked the right questions we can discover an answer and grow from it.

So what then is the problem?  The problem is that I am afraid.  Why am I afraid? I’m afraid because my tolerance level is constantly being exceeded.

Questions

Where did those questions come from and how did I find the answers?  In math I’ve heard that teachers want to see their student’s work to see how they discovered their answer. My teachers never really cared.  I once had a class where I did the work for every question, got every single one wrong and the teacher never said a thing. 

In life though, knowing how you came to a conclusion can be just as important as the answer itself.  Evil often manifests when the Ends justify the Means.  Growth and Personal development is lost when we fail to observe our tracks.  We need to plan our steps so we can control where we end; and look back to know where we began.

You and I don’t need someone to tell us if we are right or wrong.  We have to wait to see the results to determine the outcome based on our growth.  The class I had with the negligent teacher may have impaired my ability to learn, but it doesn’t impair my quest for personal advocacy.

Fear – A New Universe of Cancer helped me express what I was feeling.  It also helped me boil down the contents of my life into its components.  It was then that I discovered what was hurting me the most.  Fear is the culprit, it was tearing me apart.

I looked back at some of my old posts.  One of the valuable parts of this blog is that it helps me document my personal exploration.  Within this documentation I discovered a theory I had about constant pain.

“The discomfort I feel on a daily basis helps me maintain my focus for change. The stress I experience from these sensations can be positive but I foresee a problem. My daily scare could lead down two possible negative paths.

Answer

I am in a constant state of fear, chasing my own tail in a never ending cycle.  My state of fear started once the neuropathy took a foothold in my life.  Since then I have been trying to find a way to overcome it.  Its not necessarily the neuropathy that I want to overcome though, its the fear of it, which then became the fear of the fear.  I have been trying to find a way to stop my fear of fear, but I have failed at every turn.

I have learned to succumb to pain, nausea and all sorts of anger, but I have not found a way to succumb to fear.  Everyone, especially my father likes to say that anger will eat you up like cancer, but for me it has been fear.  Not of him or anyone else, but of not being able to live life the way I want to live it.

If you would like to continue the journey through a New Universe of Cancer feel free to click this link.

 

Sick – A New Universe of Cancer

Sick

Sick

Today I intended to have my scan but last night I felt terribly sick.  I hadn’t thrown up that much since chemo days.  I was up all night, so once the hour was close to my appointment I attempted to get a ride to the scan.  It would have been irresponsible to drive in my fatigued state.

Luckily the mixture hadn’t been created and I was able to reschedule.  I don’t know what had me so sick, I am not nauseated now, not since this morning. Maybe it was food poisoning?  The flu? Perhaps it was stress?  It could have been any number of things I suppose.

I’ve been focusing on stressful things as of late.  Maybe this is a sign that I need to change gears and add more levity to my routine.

Projects

I’ve been researching oncology massage, I am still very early in this process. By profession I’m a massage therapist, I love helping people.  Massage therapy when performed by a trained therapist can have instant and positive rewards.  It is one of the few things in life that has this ability.  So many other things in life that provide instant gratification isn’t healthy.

I mentioned this before, currently I am developing a booklet focused on self advocacy for patients.  Right now I am searching for others who’d like to be a part of this project, my goal is to create material for people who’ve been recently diagnosed.  I want it to be something a patient could refer to at any phase of their journey.

If you are reading my blog and have any questions about it feel free to post a comment and we can discuss further.

If you have enjoyed this post and would like to read more about my journey through cancer feel free to click on this link.

Power Advocacy Podcast

Power

Power Advocacy

This marks the first episode of my Power Advocacy podcast.  My goal is to illuminate the path for those who seek to navigate the treacherous road of cancer.  I want to help you find the way, to guide you through turbulent waters into the soft, soothing sea.  I hope that these words will give you the power to reach for self advocacy, to taste independence and to become the master of your fate.

Dreams and Passions

It is important to have dreams and passions. They are the fuel your heart uses to empower your mind to achieve great things.  The misery of my cancer journey has made me a powerful man.  I want to teach you how to become a powerful person.  Come join me on this journey, lets make the cancer road a less horrific path.

 Goals

I am…

  • …in the process of developing a self advocacy booklet.  This illustrated source book will provide the tools you need to become your own advocate.
  • …looking for cancer organizations who would be interested in spreading cancer awareness and patient advocacy.
  • …working on finding resources that will make research easier on current and future cancer patients.  The internet provides a wealth of information, but not all of us are rich enough to know where we can find it.
  • …writing an autobiography that focuses on my journey through cancer and the tools I used to navigate its treacherous waters.
  • …searching for ways to bring greater awareness to my own cancer (NET/Carcinoid), so others my reclaim their lives and live life to its fullest.

If you would like to read more about my journey into self advocacy feel free to click on this loving link.

 

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

Deity of Cancer – Personal Advocacy

DeityDeity of Cancer

Your doctor is not a god, they are not a deity of cancer.  You are entitled to proper care, you deserve to be treated like a human and your doctor is working for you, you are their boss.

I will say this again, YOU ARE THEIR BOSS.  YOU ARE PAYING THEM.  If you are not satisfied with their performance make it known. You must say something, if you feel like you can’t do it over the phone or in person, then do it through electronic communication.  If your doctor refuses to give you the treatment you deserve, find someone who will.  FIRE THEM! Your doctor is not the only one who can treat you.  Most likely they aren’t even the best person for the job.

Treatment

Chemotherapy can cure your cancer, but it might not.  Radiation can treat your cancer, but it might not.  Surgery can remove your cancer, but it might not. These treatments are incredible tools in the crusade against cancer, but they are not the only ones.

Talking to Your Doctor

When talking to your doctor it is up to you to take charge and become your own health advocate.  You do this by asking questions.  Once again your doctor is not a deity.  They need to sell you on the treatment they want to do.  You need to be willing to pay the price in PAIN that you WILL experience for buying into their plan of care.

Ask your doctor if you can record the conversation.

Why would I want to ask my doctor if I could record him?  First, its the ethical thing to do if you want to record them.  Secondly it increases your retention, understanding and helps you fact check their evidence based approach to treatment.  Why wouldn’t my doctor want me to record them? The following article provides some insight.  

Recording what the doctor says allows me to:

  • have a better ability to remember what they said.
  • fact check the information they give me.
  • effectively research the treatment options they suggest.

I believe that most people are afraid of the power differential between them and their doctor.   This is something that has caused me great duress throughout my interactions with my oncologist.  Any tool we use to reduce this power differential increases our comfort, confidence and improves our treatment are valuable assets.

As patients the last thing we need to be concerned with is the ego of our doctor. Their fear of being scrutinized for malpractice is not our concern.  The only concerns we need to be having is: are we receiving the best, most appropriate care available?

Ask why the treatment options are the best for you.

If you are about to make permanent changes to your life, you need to know why. Why does the doctor believe these are the best treatment options?  How did they come to this conclusion?  We are talking about your life here, you need the facts and you need to make sure that your doctor is using evidence based information to determine your best possible care.

Ask them about your options.

Ask them if there are any specialists more qualified to treat you. Is there is any research on your cancer?  What are some other options available to you outside of the treatment options they suggested?

So many will say that this approach creates friction between them and their doctor.  That they’re afraid of angering their doctor, because it will impact their treatment.  If that is the case why would want that kind of person to treat you?

Once again this is about you, not them.  Friction gives you footing, if you want to stand you need some kind of traction.  You are the only one who is going to stand up for you.  Use all of the tools you have to get the treatment you deserve.

Continue the Learning Journey

If you would like to learn more about options available to you, feel free to follow this link and read about Palliative treatment.

Empathy – Critical Awareness

Empathy

When empathy becomes reality, your empathy has failed you.  Watching someone experience something is not the same as experiencing it.  This goes both ways.  It is not fair to claim you know something, when you don’t.  This post is about exploring the reality of cancer, our perception, empathy and our roles.

Empathy

Perception

Recently I was having a conversation with a friend.  She said that I wasn’t appreciating her and that I haven’t given her that appreciation for six months.  I told her that the reason was because I was going through chemotherapy.  She said that chemo was no excuse, then continued to say that she knows what chemo was like because her father went through it.  Her father was able to make her feel appreciated while he was going through treatment, so I should have too.

I told her that chemo was not an excuse, that it was a reality.  That for the last six months I’ve faced the most terrifying and painful experience of my life.  Things that she has never experienced and has no true understanding of.  That she would never understand what it feels like until she’s gone through chemotherapy (something I hope she never does).  I told her that I’m not her father, boyfriend and she is not my daughter and my role in her life is not as a significant other or parent.  That it sucks to feel unappreciated and as her friend I wished her feelings were not hurt.

Empathy

Friends do things that we may sometimes consider deplorable.  Her comment could easily be considered as such.  In the moment I was calm and didn’t allow it to hurt my feelings.  Later my feelings were hurt by it a little bit, but I vented to my significant other.  Then those bad feelings dissolved.

Friendship is about more than just the good times.  Sometimes we say things when we are really stressed that hurts those close to us.  I believe the fair thing to do here is to accept what they say as stress and move on.

Roles

If you have a loved one with cancer, it doesn’t mean you know what the experience of cancer is like.

Just because you…

  • have walked with someone in their cancer journey doesn’t mean that you know what its like to have cancer.
  • watched someone go through chemotherapy doesn’t mean you know what its like to go through chemotherapy.
  • know someone who went had surgery, doesn’t mean you know what its like to go through surgery.
  • know someone who had radiation treatment, doesn’t mean you know what its like to experience radiation treatment.

If you have cancer, it doesn’t mean you know what its like to watch someone you love suffer through cancer.

Just because you…

  • have cancer doesn’t mean that you know what its like to watch someone go through cancer.
  • went through chemotherapy doesn’t mean you know what its like to watch a loved one go through chemotherapy.
  • had surgery, doesn’t mean you know what its like to be there for someone going through surgery.
  • went through radiation treatment, doesn’t mean you know what its like to watch someone go through radiation treatment.

If you would like to read about the journey of cancer feel free to continue your exploration by clicking on this link.

Change – A New Universe of Cancer

change

Change is the way of life

At every step in our life we are faced with change.  It’s an opportunity to become something else, to be transformed by the moment.  I have experienced many opportunities to change in my cancer journey.  I have done my best to accept these gifts as they are presented to me.  When our world begins to transform we must temper it with wisdom, becoming something else is not enough, we must critically observe the transformation.

Reflections

Ghost Tree (the art piece of the tree: see below) was inspired by the parts of our lives that die but remain even after we continue to live.  Looking at it now I’m reminded of my mother, especially her journey through cancer and heart disease.   She died of congestive heart failure and pancreatic cancer.  Since my diagnosis there have been many moments when I wondered if she had carcinoid cancer.

My mother walked the road of cancer with grace.  She made the most of her life.  She lived her final moments by her terms.  When she was put on hospice she chose to take control of her life and how she would walk into death.   My mother was an inspiration, an incredibly loving and passionate woman.

In the last weeks of her life she arranged one final hurrah, a vacation for the entire family.  Together we went on a cruise, it would be the last time we would be together as a happy, harmonious family.

The diagnosis of cancer is a catalyst for great change.  It is through our wisdom that we decide whether this change is benevolent or malevolent.  My mother showed me that no matter where the road leads us, we ultimately have the decision to decide how we leave.  We decide how we will be remembered and how much love we can bring into the world.

a picture of my wonderful mother
This picture was taken when I was about 19. This is how I remember my mother.

A Good Life

As we move forward in life, parts of us die, while others continue to grow.  When we lose people close to us it is important to remember how they lived, but it is also important to remember how they died.

The end of life is not the first death we’ve experienced.  Change means something must stop so another may begin.  These moments are smaller deaths to prepare us for the final one at the end of our road.  If we gracefully accept the small changes in our life we will be ready for the final transformation at the end.

This post is about acceptance, love and growth.  It is an exploration of life and those who have inspired us.  Its a message that change can be good, the good comes from wisdom, temper it well and you will lead a good life.

 

Life after death
Ghost Tree. A life of cancer, a life of life.

 

I am beginning to discover that it is our dying parts that inspire others to live.  To explore the magical nature of life and take the time to experience the experience.  If you would like to walk back in time and read my thoughts from the past feel free to follow this link: 

A New Universe of Cancer Part: 5

 

 

 

neuropathy

Neuropathy February 13, 2017 Vlog

Neuropathy

Late at night I notice my neuropathy the most, its also when I am alone.  The two are a terrible cocktail, especially when I begin to consider how much more I can tolerate.  I have known pain and agony, but this sensation or lack there of is maddening.  I need to feel the world, living without sensation is unbearable. There is so much pleasure in the world, so many wonderful experiences derived from touch.

These late nights are trying times for me.  When the sun goes down, my insomnia shifts into gear and I lose focus, sometimes the world looks like a blur and other moments I stare too deeply and get lost.  Its hard to hold on to the world when you can’t feel it in your hands.

Time traveling through Cancer

The idea of time traveling through cancer might seem silly, but its the best way to create change.  I would like to see this change end with the outcome of personal advocacy.

I wish I had someone in my life who was a true motivation. Someone who could have been my health advocate, someone who could have helped me avoid all of the pitfalls I faced.  I could wish I was the only one who would ever face these pitfalls.

Those wishes ultimately amount to nothing.  They lead to regret, a feeling that celebrates inaction, leading us to say “I wish this and I wish that.”

Truly at the end of the day I should have been my own motivation, my own advocate.

Throughout my life I’ve been able to avoid buyers remorse through my proactive prevention of regret.  My cancer journey has been more powerful than most of my philosophies, I hope that I can hold onto my drive and purpose, and retain the significance I see within my gift of cancer.

Shawn White Blog

Living With Cancer

NCAN

February 12, 2017 Vlog

February 12, 2017 Vlog

The focus of this Vlog is your feelings.  Throughout my journey I have been told by so many people that I should feel this or feel that.  Ultimately what you should be feeling is whatever your are feeling right now.

Thank you for taking the time to listen to my Vlog.  If you would like to read what I wrote I have it below.  Thanks for listening. 

Feel your feelings

Hello my name is Shawn White, but you can call me Shawn White.

This is my vlog, this is your blog, this is for anyone who is exploring their heart and strumming its strings.

It is a place where I can express my feelings, to swim through the open waters of emotion, and find my way to warm shores.

I want to find a beach so bright with golden rays that I can revitalize my heart.  Sand so soft and smooth I can dig my feet deep and anchor myself in place.   A place I can enjoy the cool slow moving wind and enjoy it until the end.

This Vlog is not about what some would call sad, or bad.  It is not about smiles or laughs.  This Vlog is about life, it is about experience, it is about being human.

Throughout my cancer journey I have been told many things. Ultimately of all the advice given to me, the greatest given was by a man whose name starts with the letter S.  He is a wise gentleman who has inspired me to accept and explore my feelings for what they are.

From his words to mine, I believe the greatest advice I could give, is to follow your heart like a toucan’s nose.  Whatever you are feeling is the one you should know.  Live your life, feel whatever you are feeling.  If you are angry, be angry, if you are sad, be sad, if you are thinking about death, think about death.  Stop refusing to experience your emotions because it might make someone else feel comfortable.

Live your life, feel your life, embrace the experience of existence.

Feel your feelings

 

If you would like to read more about my thoughts and our journey through cancer feel free to click this amazing link!

Stress – We must become advocates

 stressStress is a Catalyst for Change

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

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

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

Stress: a tool for advocacy

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

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

Email

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

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

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

Searching for a new oncologist

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

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

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

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

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

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

A Conversation with my Doctor

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

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

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


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

 

 

Health Advocate – A New Universe of Cancer

health advocate

Health Advocate

Life is akin to a garden, one that needs to be tended even when it yields nothing. Through hard work and dedication we can reap the rewards of our labor and taste the juicy flavor of our investments.  I have been researching, poking, asking questions and learning how to become my own health advocate.

I’ve finally begun to taste the fruit of my labor.  This week my oncologist admitted that he was wrong for not ordering the tests I requested.  He said that I was right and that he wanted to make sure that my needs and expectations were met.  His apology meant a lot to me, it is a rare occasion to hear a doctor apologize and reveal his humanity.

I have learned a lot from this experience, much of it needs to be further analyzed but the primary points I have discovered is it involves three major components: Critical research, empathy and healthy personal boundaries.

Components

♣Critically research everything.  You need to understand as much as you possibly can about your disease.  Compile the knowledge you need to duel your doctor.  Learn the language of your disease,  the words, tests, scans, and acronyms used  must become common parlance in your new vernacular.

♣Empathy, you must have the ability to evaluate the decision making process of your doctor.  If you would like to effectively communicate with them, it is absolutely necessary that you empathize with them.

♣You must have strong personal boundaries.  I believe that there are two major categories of personal boundaries: Inner and Out.  The Outer boundaries apply to any situation where someone is making you feel uncomfortable.  Inner boundaries apply to how you might hurt yourself.   Becoming your own health advocate requires that you set healthy Inner and Outer boundaries.

Being your own Health Advocate is about researching, asking the right questions and demanding the treatment that is best for you.

If you would like to read more about personal advocacy feel free to click this link