a new universe of cancer

A New Universe of Cancer

This is a tale, a journal about my quest in life, a walk down one of its many roads. A New Universe of Cancer is a series of blog posts that illustrate my journey, its an opportunity for you to read my journal.

Come with me and join in my adventure.  Watch as I transform and learn how become a better human.  Move with me as I overcome hardship, embrace love and find my way in these turbulent waters as I swim through the abyss.

In the following blogs you will discover who I was at the beginning and then watch who I become.  It is an opportunity for you to look at yourself and see that you are where you are now.  But as you read, perhaps you will begin to change, perhaps you will move down the very same road I’m on.  You will take the next step as I take my step.  Then at the very end maybe you will be able to look at yourself and see a change.  Perhaps, finally at the end, you will have gleamed more from all of this than I have.

A fine day in deed

A Fine day

A Fine Day

I was a fine day, a fine day indeed.  Today I started cleaning my home.  Right now I am taking a break from it, because I just don’t have the lung power to keep at it all day.  I hooked up my rice maker, that is exciting, I think it would be nice to have some rice available whenever I wanted it.  A short term goal of mine is to get my house tidy again, have a good food prep area and feel comfortable eating at home.

All of this is wrapped up into my pursuit in reducing stress.  I think that if I can reduce my stress I can take some strain off my nervous system. Then maybe that might be an immediate way for me to reduce some of this neuropathy.

I have noticed that the less I focus on the sensation the less I notice them.  Video games have never been much of my thing, but World of Tanks has really helped me get away from my body sensations.

The days of Chemo fun

I remember the marathon cleaning sessions I would do after I recovered from each treatment.  Ino would do nothing except for sit on the couch texting women on tinder as I vacuumed, swept, washed and cleaned.  One of his jobs was to clean the house but he never did.  He always had an excuse as to why he couldn’t do it.  The excuses ranged from the smell of cat litter made him want to throw up, washing dishes gave him flashbacks, his knees were hurting too much to move, he was too depressed to help, he was suicidal or he was going to go out on
a date.

The house would get worse than it is even now.  Mostly because back then I was throwing up all the time and was bed ridden for a good part of it.  For the two months that he lived with me he did the dishes twice and took out the cat litter box five times.  Every time he did something he griped so much it was clear that he was doing the chores.

A fine DayProtective Super suit of INO

On the five occasions that he changed the cat litter box, he looked like he was wearing a bio-hazard suit. His face was covered with a mask, he wore latex gloves, and put on an alternate pair of clothes.  As he changed the box he would yell and make throw up sounds that echoed throughout my home. After he changed the box he would run as fast as he could through the house to toss the litter into the garbage can outside.

Sometimes Ino would see that either Acre or Sasha had thrown up a hair ball on the floor.  I watched his reaction many times.  Ino would first start by opening his mouth up as wide as it could go.  His hands would raise above his head, his arms slightly bent so his elbows were pointed outward.  Then he would growl and then release a blood curdling scream.   “Mother fuck!”  was a common statement he would make.  I would look over at him and give him the “what in the hell” kind of look.  He would also have these reactions when he found cat hair on his bed sheets or his clothing.  When he lived in the house there was a lot of growling and strange yells.  I’ve never experienced that kind of weirdness before, but it wasn’t until Ino started abusing me that his other behaviors became a problem.

Conclusion

Beyond all that silliness today has been a pretty good day thus far.  I slept well, I feel a little spacey, but I do have the energy to start getting things done.

A fine day in deed.

Life – A New Universe of Cancer

life

Life?

What do I have to say about life?  Right now I hate it.  I hate my existence, I don’t know if I have ever hated it as much as as I do right now.  Every moment I am haunted by this terrible disease, every part of who I am is built into it.

Sometimes I ask myself why do I even exist?  Why am I on this place?  What is the purpose of my existence? For most of my life I have known nothing but pain and fear.  Is this what life is supposed to be?  I really want it to be something more than that.  I want to live the life that…

Maybe that is just a fantasy.  Perhaps those are fairy tale lives.  I just never thought this would happen.  Everyone always says that, but I had definitive thoughts saying that I would never have cancer.

I’ve begun to relax as I type this.  There is a certain peace in doing this blog.  I really do believe I am experiencing all of this so I can help people.  That belief is very important to me, it makes all of this worth something.  I don’t know if I could endure all of this if there wasn’t something good to come of it.

I really have to believe that I can change the lives of others.  My heart needs to make this terrible journey into something good.  I need my life to mean something.

To start a New Universe of Cancer feel free to click on this friendly 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

 

 

 

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

Nightmares and Fear – A New Universe of Cancer

nightmares

Nightmares and Fear

I have nightmares every time I fall asleep.  There is so much terror and uncertainty in my life that it is sneaking into my dreams.  Today I spoke to my psychologist about the things I have experienced.  It seems like if it isn’t one thing, then its another, or another, or another.  These horrible experiences keep finding me.  Its like I am continually being baptized by fire.  I do my best to make the best of it.  I try to see myself as a hunk of steel being forged into a sharpened blade.

All of the forward momentum and force of will has its limits.  Eventually you start looking at yourself asking why, why do these things keep happening to me? What am I doing that is causing all of these horrors?  What can I do to stop it?

I have been pushing the idea that I am not my cancer, but right now I feel like I am my agony.  My life is a mass of terrible things that are very uncomfortable.  In every corner there is either worry, pain or fear, and I have found no way to escape or overcome it.

If you would like to continue following me in my journey through cancer feel free to click this link to read more.

Suffocation – A New Universe of Cancer

Suffocation

Suffocation

Suffocation or at least the feeling of it is terrifying.  Every day I get to sample what its like to feel like someone has a bag over my head. The airway feels clear, but it feels like I’m not getting enough oxygen.

Last night I had more than one of these suffocation scares.  I had one walking to my car after my group therapy meeting, the other was getting ready for bed.

The experience is scary.  When it begins I can feel something strange, an odd sensation in the place that was once between my lungs.  It feels swollen like feelings, it feels like it is pressing against something that’s making it hard to breathe.  As I pull the air in, I can feel it fill my remaining lung.  No matter how hard I pull in, it makes me think I’m not getting enough oxygen.  I can feel my lung fill to capacity, but its just not enough.  This makes me breath harder and faster.  I try to breath slowly, I really focus on it, but as I’m trying I begin to fear suffocating and my anxiety begins to grow.  It takes several moments to navigate through this horror.  Afterwards I am left exhausted.

Fog of Complacency

Earlier in the evening I had a conversation with a young man about existence and purpose.  I shared with him that I believe we often live in a fog of hypnotic complacency.  It’s only after we’ve crossed a threshold of tolerance that we take action and do something about the things in our lives that bother us.   We use this moment as a catalyst to change, once this pain drops below our tolerance level the motivation disappears.

The pain I experience on a daily basis keeps me motivated to change it. Essentially my barrel is constantly full, making me want to continually take action.  The breathing, the feeling of suffocation is a daily stress that helps keep my barrel full.  I am constantly beyond my tolerance level.

Conclusion

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.

  • The first is it becomes normal and so my tolerance level is increased.
  • The second is that it puts me in a constant state of fear.

The value of this interaction is that it opened my eyes to the potential negative outcomes of this pattern.  Perhaps the knowledge that these things could happen, might help me live a better life.

If your would like to continue flying in your spaceship through the Universe of Cancer feel free to click on this link.

Direction – A New Universe of Cancer

direction

This piece of artwork set the direction for several years of exploration.

Direction

Sometimes it is a challenge to see our environment, it is difficult to make out exactly what it is we are experiencing.  When you are facing something as difficult as cancer it can be hard to find which direction is the right way to go. This is especially true of my cancer journey. When I started this road I put my faith into a group of professionals that I thought would lead me well. Unfortunately I discovered I was a blind man being led by another blind person.

In one of my last posts I made a comment about how upsetting it was that my oncologist knew very little about my cancer.  After watching this video it shed more light onto why he was so mistaken about the nature of my disease.

Why do I need a specialist?

Ignorance of something rare is excusable, but is it when the doctor doesn’t refer you out to someone who might be more knowledgeable? 

Bronchial Carcinoids

There are two kinds of carcinoid, typical and atypical.  I have the pleasure of owning the atypical variety.  I had a pneumonectoy on July 27, 2016.  That means that my right lung was removed in the attempt to stop the spread of my cancer.

In the following video Dr. Robert Merritt details some of the nuances of Bronchial Carcinoids.  If you have the time to listen to it its actually pretty fascinating.  If you have a carcinoid friend inside of you there is a chance it might get your gear going in the right direction.

Look here! This is another opportunity to read more about my cancer journey! If you would like to take some more steps with me, feel free to click here!