Rationality

Rationality – Tree of Life

Rationality is one of the seven positive roots of the Tree of Life. It’s the act of fueling our thoughts with positive energy. With it we make sound emotional decisions supported by reason.

That which conforms to principles of good reasoning, is sensible, shows good judgement, is consistent, logical, complete, and relevant. Rationality is a summary term like ‘virtue’ or ‘goodness’. It is manifested in an unlimited number of ways and depends on a host of principles. There is some ambiguity in it, depending on whether one considers only the logicalness and effectiveness by which one pursues one’s ends, or whether it includes the assessment of ends themselves. There is also ambiguity in whether one considers selfish ends to be rational, even when they conflict with what is just. Does a rational person have to be just or only skilled in pursuing his or her interests? Is it rational to be irrational in an irrational world? [1]

Throughout the years, I’ve watched the world become something other than what I thought it was. People doing things that don’t make sense. Their motivations are indiscernible. In a story, a character and their motivations must be believable, in life that is not the case. The only commonality I’ve seen is that people who hurt, hurt others. Some people hurt so much they become unbelievable villains. It makes you want to believe their only drive, the motive of their actions is to watch the world burn.

In my journey, I’ve blamed myself here and there. I’ve been convinced I was the villain, the destroyer of this relationship or that one.  That doesn’t make any sense, I am not solely responsible for the destruction of my past relationships. Just like you are not solely responsible for yours., but we are all partially responsible for anything that happens in all of our relationships.

If I were healthy…

When I was going through chemotherapy I was dating this lovely young woman. After we broke up I said that her and I wouldn’t have dated if I were healthy. I don’t know if that is true, because I was fond enough to fall in love with her. Truly in retrospect I think the statement was a coping mechanism.

The way it ended was terrible, perhaps more so than I anticipated. A lot of shitty things happened in the end. It made me feel like I was used. Used for all sorts of things and it made me feel like a tool, a weapon, a place holder and a stepping stone.

That’s life and its ok. I am grateful I had this beautiful young woman in my life when I was lonely and afraid. She was there for me in a way I needed someone to be in my life, she was my knight in shining armor. Spending time with me in that terrible hospital, holding my hand during chemotherapy and standing beside me as my lover. She eased the horror of staring down the barrel of death and I am eternally grateful to her for that.

So, what does all this lead into?

The positive root of rationality is more than accepting your role in relationships, it’s acknowledging and respecting their ebb and flow. We’re not always equally responsible at every moment. A wise man once told me this ebb and flow is akin to a seesaw. Sometimes you’re in the air and sometimes you’re not. There are times when we are more responsible and times when we are less.

[1] Paul, Richard, and A. J. A. Binker. Critical Thinking: What Every Person Needs to Survive in a Rapidly Changing World. Foundation for Critical Thinking, 2012.

Malfunction – Tree of Life

 

 

 

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.

 

 

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.

I feel like garbage

Garbage

garbage

Where am I am today?  I am in a I fucking hate this life kind of mood.  I feel like utter shit!  I am tired of feeling this way.  I can’t feel my fingers and toes, earlier I couldn’t feel my face.  I am stressed beyond imagination and I feel like all of my hopes and dreams have been stolen from me.  I feel robbed.  I feel like I am living in this shell of a body, I am so angry.  I try and I push and I do my best to make the best of every moment.  Times like these, times like these long moments I despise the cards that have been dealt to me.  It fucking sucks, there is no other way to describe it.

We must become advocates, all of us

Becoming your own advocate means you must learn how to critically research and develop critical thinking skills.  I consider personal advocacy to be an inner boundary (something I will discuss later).

Being your own Advocate means you must be a leader.  You have the break the mold of putting your life into the hands of strangers you know nothing about. These people should be working for you and not the other way around.

We should be interviewing these people, they should be earning our trust, we are their boss, there should be no point in our treatment plan that they are our boss. They are the people we are using to get a service done, if their ego or inability gets in the way of achieving your goals then they are failing in the duties they were hired for.  When this happens it is time for you to fire them.

If you hired someone to fix your motor vehicle would you hire them again if they failed to fix the part you paid them to repair?  Would you hire them again if they refused to follow your instructions?  No, of course you wouldn’t, so why are we shelling out thousands and thousands of dollars to health care professionals who are not meeting or exceeding our expectations.

Something has got to change and the only way I can see that change happening is if we have a greater understanding of our care.  If we take charge of our treatment plan and learn how to say NO, we can become a true advocate for our own health.  We have to be our own advocate.  This WE is more than just cancer patients, this is everyone.  Everyone has to be made aware of how to demand the service they deserve because they are paying for it, the service they deserve because they are a human being.

 

What does this mean? Part 1 (Introduction)

What does this mean, what does that mean, these are questions I found myself asking along the way.  Often I would see lists of abbreviations and acronyms that represented critical bits of information that did not exist within my vernacular. There is so much information in the medical world, it is easy for anyone to get lost in its sea of vast knowledge.

This series focuses on the abbreviations, acronyms and terms found on the different documents we see through our cancer journey.  This series is less entertaining and more informative, each post will have the subject matter after the part number in parenthesis.  My goal is to provide a comprehensive and easy to locate list to help you understand the difficult road ahead of you.

I want to leave off saying that I am not a doctor or a physician.  These definitions and explanations reflect my own personal research on the topic.  You should consult your health care provider when deciding your medical needs.  My goal is to give you some frame work to help facilitate those conversations.

experiencing life

Experiencing Life, Experiencing Cancer

While experiencing life I have faced all sorts of challenges.  Some have been OK but most have been terrible, that’s the nature of the journey.  If cancer were a super fun time, then people would be taking summer vacations to visit.  That’s not to say that there aren’t good things about it, it is just not the most fun adventure.

Sometimes we forget this disease is a part of our life, it is an experience, life by its very nature is meant to be explored.  From time to time we need to take a breath and calm down, look at our lives and think about what we are going through. Perhaps ask ourselves if we want more from our existence than the pursuit of survival?

I don’t want to live just to survive, I don’t fight to defeat the monster inside me.   I am here on this beautiful earth to experience life, to create a legacy and to do something that improves the value of existence for others.  The pain, agony and finality of my cancer reminds me of the limited time we have on this world.  It reinforces my resolve to pursue my passions, achieve my dreams and live life by my terms.  Instead of heeding the wishes of my disease.

Shawn White Blog

Living with Cancer

NCAN

December 6, 2016. Complain and let go of some pain

December 6, 2016

I know of no words that can effectively express the sensations i am experiencing. My body hurts in so many alien ways it is difficult to find peace or even the eye of the storm. But at least I have my fancy bag of tricks to find my way back to the boat. I put myself back at a time when I was in a healthier, stronger place. The energy of then, invigorates me now. It fills me with a good reminder of the healthy life on its way. That there are no such things as good and bad experiences, only opportunities for greater wisdom.

The world is a beautiful place. Filled with so much wonder and awe. Laying here i feel that more than ever before. Every moment is a reminder that every moment should be treasured.

Shawn White Blog

Living with Cancer

NCAN