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.

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.

Palliative treatment What does this mean? Part 3

Palliative Treatment

Palliative treatment is a term used to represent the care or therapy of a patient. More specifically it focuses on the their symptoms by addressing them directly and building a treatment plan that focuses on their needs.

The care plan aims to improve their quality of life through medical, emotional and spiritual support.  It’s a treatment that helps the patient live their life to its fullest, whereas hospice aims to make a dying patient’s final days peaceful.

I believe that palliative care should begin at the onset of a cancer diagnosis.  A team of experts and specialists should be brought together to assist in the patient’s treatment plan.  Nutritionists, physical therapists, massage therapists, chiropractors, psychologists and other members should be on a cancer patient’s super team.

The cancer experience often leaves you feeling like a child, overwhelmed and frightened.  It is at these scary moments that having someone educated, experienced and empathetic at your side can be the difference between a life of hell and one well lived.

 

Palliative Care

Palliative Care Video

Follow this fancy link if you would like to follow me as I discover my own personal health advocacy.

 

Frustration – A New Universe of Cancer

frustration

Frustration

Such a day it was going to my oncologist appointment today.  The event has filled me with so much frustration it makes me want to laugh.  At this point I have no confidence in my oncology team.

Ultimately this is alright, in the scheme of things I believe all of this was supposed to happen.  I don’t believe in predestination, but I believe we have experiences set before us to discover new gifts.

The gift I’ve been given has been my journey of cancer.  To witness how much more difficult cancer can become when your oncology team continuously drops the ball.  In my journey every new piece of information has been beyond each step’s projected worse case scenario.  This has trained me to expect the worst, I am no longer shocked when a situation is worse than my doctor’s expectations.

Today’s frustration

Today peaking with my oncologist I asked why he didn’t want to use the Netspot kit?  His response was that Netspot wouldn’t be effective in finding my neuroendocrine tumors.

Dear goodness I was filled with so much frustration at this moment.  His statement when compared to the FDA’s website paints a very different story.  To summarize, it says that the Netspot kit is used specifically to find NETs.

I knew I couldn’t push any further with the idea, so I changed gears.  I asked him to refer me to a nutritionist.  He was shocked by the very idea that I would want one, so shocked that he thought the idea was silly.  Apparently it was beyond him to think that perhaps after (or even during) my chemotherapy that making changes to my diet could improve my health.

From where I am standing, going over what he has said to me, it makes me feel like he knows very little about my cancer.  I can’t tell you how frustrating this is. This is terrifying, right now I am questioning whether the treatment he prescribed me was even appropriate.

The Positive

The positive of all this is I now have a great perspective of the cancer journey.  I have seen where the holes are in the treatment of cancer.  Take for instance my own journey, after the removal of my lung no one suggested any kind of physical therapy.  No one explained to me the details of what a NET is, what I could expect from it or how it could impact my life.  There wasn’t even the mention that maybe I should seek out an oncologist who specializes in Neuroendocrine cancer. As my own devil’s advocate I know that I should have been my own health advocate.  Its hard to be strong like that when it all starts.  Right now I find myself wondering how any could possibly expect that out of anyone?

Now I am looking further into my own treatment, I am searching for a team that specializes in NETs.  I will find someone who will listen to me, someone who knows about the cancer that I have, someone who has the skill to treat it.

If you would like to learn more about my journey through cancer and how this moment impacted my quest for person advocacy feel free to click this fancy link.

cold air

Cold Air of Cancer

Every choice we make has a price, from the softest simplest decisions to actions of incredible magnitude. When it comes to cancer the prices are inflated, no matter what we do, we will feel a great amount of agony. Although we can’t escape the agony we can influence how much pain we are willing to pay to live. If you have never faced the big decisions of life and death, treatment or no treatment these concepts are truly impossible to understand. You might be able to fantasize about what you would or wouldn’t do, but that’s all they are, fantasies.  I hope you never have to face the cold air of cancer to discover what you would actually do.

Lets dial it back a notch and imagine a simpler, easier place. Imagine laying on your comfortable bed, as you stretch and sprawl out you hear a soft pop.  Now there is some slack in the fitted sheet beneath you because its has come loose from the corner.  You lay there for a moment, you could get up and remake the bed and sure it might make the experience more comfortable, but you are going to lose the comfort you currently have. If it is a chilly morning you are guaranteed to experience the cold air outside your comfortable cocoon. In a lot of ways this is how cancer is.  It sucks that the bed is slowly unraveling. However, if you try and fix it, you are guaranteed to lose something you currently have.

I love the warmth of my bed in the morning, feeling those soft clean linens around my body feels fantastic. Poking my  foot into the cold air, then slowly sliding it under the warm blanket is such a magical sensation. This comparison reminds me of the first day I started coughing up blood. I was nestled in my bed, comfortably relaxing within my blanket burrito. The comfort slowly slipped away as I started coughing and hacking. Though I knew something bad was happening, I dreaded to see exactly what. My reluctance to reach into the cold air outside my cocoon has paralleled many terrifying moments of my cancer journey.  There is peace not knowing. However there is horror in it too.  Eventually a time comes when we are forced to face our misfortune and endure the cold air of our cancer.

When the time comes for you consider moving from your perfect pocket of warmth, ask yourself a few questions. What is the goal, what will you gain from this, what will it cost and will it be worth the sacrifice? In the journey of cancer we all have to a price to pay, that price isn’t in money, it is in pain. How much pain are you willing to pay to live?

When we get up to fix the sheets it comes with a fair amount of discomfort. We have to give some to get some. With cancer it is much harsher, you have to give a lot to maybe get a lot. It is a gamble, the bed you make might not be the one you want to sleep in. Whatever you decide it is your choice, no one else can or should make it for you. When everything is said and done, you suffer with the consequences of your action or inaction. Whichever decision you make it comes with a hefty price, and when it comes to cancer there are no small prices to pay.

The cold air can haunt your dreams

Years ago when I first wrote this it was after having a nightmare.  My sleepy time tunes should have been terrific, instead they were terrifying.  My night time slumber land was wracked with terrible feels and dream sights.

The dark dream was set in my home. A terrible rain roared above, like a waterfall thick droplets soaked my roof. There was so much water the house couldn’t keep up and so it began to pour into the attic and drip through the ceiling.  The floor was covered in water and my basement was flooding.  Everything was falling apart. No matter how much I worked to save my house it continued to fill.

I can remember distinctly feeling like no matter what I did, no matter what changes I made, the effects of the water would remain.  There were moments in the dream when I was outside my house looking inside. I was both inside and outside at the same time. My outside-self watched as I fought the torrential downpour as it obliterated my home. As I watched I considered my options, I could let the rain do its thing and then reenter the home like nothing happened, or I could cut out the bad parts and treat the remaining wood with chemicals.

I was afraid of cutting it up and spraying it with chemicals, because I wasn’t sure if I could handle that stress. Could I walk away from the home? Maybe instead I could just do nothing and let nature take its course?  I knew with this kind of damage there was no way I could permanently fix it.  I didn’t want to leave my home, yet at the same time I didn’t want to continuously struggle to fix it.  Its a daunting task, especially when its destined to be destroyed.  My home would be uncomfortable to live in with the warped floors and wet ceilings, but that life would be better than to have it cut up and gutted.

Sometimes our dreams process our fears and thoughts.

Our dreams grant us the opportunity to explore our world in another way. Its a time when we can see our life with the insight of our sleepy time eye. This nightmare was a reflection of the cold air outside of my blanket. I had just completed chemotherapy, the harm it had done was horrible and I was afraid of enduring it again.

The symbols in the dream were obvious, even within the first few minutes of waking up I knew what they represented. The water was the cancer and my home was my body.  The dream was a conversation with myself, a dialogue between the deepest depths of my inside zones and the outer layers of my personality. It was an internal conversation and contract with myself to never again endure the horror of chemotherapy.

Make the right decisions for you and only you

It all comes down to making the right decisions for you. We all have to decide how much we are willing to endure. At what point are you done dealing with the hell of hardship? Is there a point when you call it quits and when you reach that point, what will you do?

No matter what you decide, select your treatment with considerable thought.  How you will feel afterwards.  What are you giving up to live, how much life do you need to have the experiences you want, and who’s wants are you following?

Shawn White Blog

Living With Cancer

NCAN