Living with Cancer

What is it like to live with cancer?

This is my journey. Perhaps you can stick a tooth pick into one of these morsels to sample my three coarse meal of cancer.

My story began in 2016 when I knew something was seriously wrong. I had been feeling terrible for years, but when I started coughing up blood, my life started to drip down the drain. The drain lead to a pipe and my life spiraled round and round with the rushing water.

I was caught in the unpredictable current of cancer. As it lead me forward, the obstacles became increasingly horrific.  My first great trial was my pneumonectomy. This was a surgery used to remove my right lung and it was a nightmare.

My second trial was the torture of chemotherapy, a buffet of awe-inspiring agony.

My current trial has been the torment of the unknown and the soul crushing hell of chronic pain.

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

New Orleans – Personal Advocacy

New Orleans

New Orleans

There hasn’t been a post for a while because I’ve been preparing for my trip to New Orleans.  In this mystical land, I’ll be taking a series of scans and visiting with a neuroendocrine specialist.  I can’t change the past, but I can have a leg up on the future.  This journey will give me the opportunity to further explore my disease, have a conversation with someone whose informed and can explain the results of my tests.

Recently I had my Gallium 68 scan.  Getting what you want comes with a price, the price I paid was in the form of a few uncomfortable flashbacks. The preparation room reminded me of my hospital stay.  There were sights, sounds and smells that transported me back to the nightmare of my post-surgery experience.  It was terrifying and I was alone.  Once they stuck me with the needle I remembered that these horrors are easier to face when someone holds your hand.  But, like many cancer moments, you learn to hold your own hand.

This journey and the Ga 68 scan are two moments on a very short list of wins in my cancer journey.  Though getting the Gallium 68 scan was a success it was followed by expected ineptitude. This ineptitude manifested through my general oncologist’s inability to read the results provided to him.  The information he told me over the phone makes me think he barely read the results at all.

Personal Advocacy Tips

Four valuable lessons I’ve learned about personal advocacy.

  1. If you have cancer, skip the generalist and see a specialist.
  2. Demand to see the test results and push to speak with the person who interpreted them.
  3. Get a second then a third opinion.
  4. The best intentions don’t always lead to the best results.

Best Intentions ≠ Best Results

Some time ago I was approached by two people who were angry about my cause. They were reading my computer screen from behind while I was at a coffee shop.  These two-people moved to sit next to me then stared at me until I addressed them.  I learned they were malpractice lawyers who represented doctors.  Their words were venomous and disrespectful toward me.  They told me that the doctors they represent really care about their patients and the intent of these doctors was to help.  They then went on to tell me I was wrong and a bad person for trying to help others achieve personal advocacy.

Clearly, we can see that even when a doctor means well, that doesn’t equate to doing well.  If your mechanic cut your car’s brake line while trying to fix it, would you let bygones be bygones if it caused you to crash your car?  Would you still use the same mechanic if they intended to fix the car but damaged it more?

My intent isn’t to pave the way for lawsuits.  I want you to be more informed.  If you know how to ask the right questions you can avoid many of the holes in life. Perhaps if you know something about car repair you could avoid hiring this terrible mechanic.  If you knew more about your health you could side step a horrible doctor, or an unnecessary treatment.

The doctor is there to serve you, you are their boss, make sure they know it. Treat your body like a business, one that pays with pain. Educate yourself so that you don’t pay your doctor more pain that he or she is worth.

I look forward to starting my trip tomorrow.  I thought that by now I would be done with my cancer journey and I would be writing the end of my novel. Instead it’s another kind of trip, one of new beginnings.  New Orleans is a journey into the world of second opinions.  This doctor’s opinion is not the ultimate truth, but it is better than the one I have been given.

Advocacy Links

My journey to New Orleans marks a major milestone in my Personal Advocacy journey.  If you would like to discover what has brought me to this point feel free to follow one of these links.

NOLA

Second Opinion – Personal Advocacy

Hope the Mouse

Fight Abuse – Boundaries – Personal Advocacy

Deity of Cancer – 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

CSO – Personal Advocacy

CSO

CSO

Today was filled with discovery! I learned that the person I saw needed CSO next to their name to be of any value to me.  The acronym stands for Certified Specialist in Oncology Nutrition.  The person had RD, LD, CDE and MS, but no CSO.  I am so frustrated I want to cry.

How was I supposed to know this?  Why was I sent to someone who wasn’t trained to treat patients with cancer?  None of this makes any sense.

What was the value of seeing this registered dietitian?  When I asked her questions she became visibly irritated.  She would turn away to enter something into her computer, a moment later she would leave the room and return with some paper.  Then she would read to me verbatim from the print off.  If I asked her another question she would get irritated, turn around and repeat the process.

After leaving her office I researched her credentials to see if she was the right person for the job.  The answer was quickly answered with a no.  If she were she would have been certified through the Commission on Dietetic Registration.  A certification that requires an RD to be registered with them for 2 years and have 2,000 oncology specialty hours.

After a bit more research I found a website that steered me in the right direction. I was only able to find one Registered Dietitian with CSO.  If you would like to use the site that I used, feel to follow this link to the NPIdb website.  I left a message with the RD and will look forward to possibly seeing someone who is skilled at working with patients with cancer.

If you would like to read more on personal advocacy feel free to click on this super fancy link.

 

 

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.

 

Sleepy – A New Universe of Cancer

sleepySleepy

I’ve been very tired these last few days, sleepy tired.  Sleepy like cute little kitty kitties.  I’m fatigued now and I’ve only been up for a short time.  I wanted to stay the night with my lady friend but I was too sleepy to drive over to her place.  Its a different kind of tired, its a cleaner feeling, its not the bone crushing weakness of chemo.  I would describe it as a softer, sleepier sensation.  The kind where you want to snuggle under some sheets and curl into the some blankets till you fall asleep.  The nausea and other unpleasant sensations are there as well, but aren’t as bad as they were the other night.

If I could I would love to just sleep and sleep and sleep, but that’s the road to bad things.  My cats love to sleep but even they are social creatures.  They need interaction and so do I.  Though my cats may love me,  I love people and much of my energy is formed from the relationships with others.

This journey has taken much of my ability to flutter like a social butterfly, but one day I intend to reclaim that skill.  I think that once I can put all the feels of now into the feels of the past folder, all will be moving in the right direction.

Fatigue seems to be one of the many sources that steals away much of what I have in life.  Fatigue and all those other unpleasant sensations.  It is important to a have a shout out for all the other baddies.

Nutrition

If I were to guess why I was so tired?  I’d say the problem lies in my nutrition.  If I ever knew how to feed myself I no long know now.  I don’t even know what kind of groceries I should get when I get to the store.

When I get home I’m too tired to do anything with the food.  I know the best way to get energy is to spend energy, but when you don’t have any to spend, you can’t make more.  I’m not going to make wishes about this or that, but I will say that I am glad I was finally able to schedule an appointment with a clinical nutritionist on Monday.

This person is not going to be the end all be all, but they can be a start.  I have the chance to improve my life through their education.

That’s where I am not and why I didn’t post over the weekend.  I hope that you all are feeling super great and had fantastic adventures!

If your would like to read about about feel of A New Universe of Cancer feel free to click this fancy drearily friendly link.

Fear – A New Universe of Cancer

fear

Fear

I’m feeling better today, I think my nausea spell may have been due to stress. Perhaps I’ve focused so much on the future, I failed to live in the now.  As I think about it though, I’m starting to realize that maybe the stress is just another symptom, maybe the real problem is fear.

An ever present force in my life has been fear.  Fear that the things I’m experiencing now will always be the way I experience them.  I’m a human and like any human I love the experience of experiencing life.  Nearly every ounce of my force is being spent on fighting this fear.

To combat it I’ve been running myself ragged researching everything I can to make things better. Unfortunately I don’t have enough energy to really make any meaningful improvements.  To get that energy I have to make sacrifices and work hard.

Improvements

This week I started physical therapy and it was rough.  The pain I experienced afterwards contributed to the stress.  I know now that I worked myself too hard. If you are having a hard time walking for days afterwards I think its a clear indication that the intensity was too high.

I’ve been doing pulmonary rehabilitation, which has been difficult.  The challenge hasn’t been to the degree of the physical therapy but it taught me quickly what my limitations are.

On Monday I will be meeting with a nutritionist.  I have wanted to have a healthy life style for a long time.  The addition of a clinical nutritionist will become a valuable asset as I move forward in my pursuit of total body wellness.  Food is the first medicine.

Next Friday I will be meeting with a neurologist, I hope he can shed some knowledge, maybe help me find an ounce of comfort in my neuropathy battle.

Reflection

I do my best to be positive.  It isn’t beneficial to compare my physical ability to my old self.  The best I can do is push forward, be healthy and have realistic goals.  My physical goal is to one day run a mile.  My running goal, like every other one requires I take it one step at a time.

It has been fascinating to witness the degree of strength and endurance I’ve lost. I watched it was slip away, but apparently more of it drained away than I realized. The process of learning how to live with my new body has been an ongoing process.  Each step I make is another success, another tool in succumbing to this new life and living life to its fullest.

Life can easily become discouraging when you compare your new existence to the old.  Though I think it is important to reflect on the past, it is more important to live in the moment.  Live in the moment with an overlay of the positive moments from the past.

Conclusion

Everything works until it doesn’t, or because we stop doing it.  The maintenance of change can be enduring, but necessary if we want to achieve a desirable quality of life. As I reflect on my morning of… discomfort, I am able to spot areas of my life where I have not been using all of the tools available to me.  I could blame anything or come up with some kind of excuse as to why, but that’s wasted energy.

Instead I need to focus on positive endeavors, overlay powerful memories and reprogram my perception.  Neurolinguistic Programming (NLP) was my greatest ally during chemotherapy, it took horrendous moments and made them trans-formative ones.

Maybe I’m too focused on my neuropathy.  Perhaps I’m working so hard to succumb to it that I’m overwhelmed by it?  Overwhelmed by the sensations and lack there of.  I’m thinking that the nausea was a manifestation of my terror, the fear that it is going to be permanent.

If you would like to read more about my thoughts on stress, advocacy or what my journey through cancer has been like, feel free to click on 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.

Gallium 68 Scan A New Universe of Cancer

gallium

Gallium 68 Scan

Today I get my Gallium 68 scan.  I am excited to receive a scan that was designed for my illness.  The part that I am not excited about is hanging out in a tube for most of the morning.  It is rewarding to do the tests that should have been done months ago.

If you would like to read more about the different experiences I’ve had during my cancer journey feel free to click 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.

 

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.  

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

Refreshed February 15, 2017

February 15, 2017

Refreshed

Today is the friendly day of February 15, 2017 and the world is a wonderful place.  Last night I negotiated a good night rest and awoke refreshed, ready to live.

As I laid in the darkness with my lovely, beautiful lady asleep next to me, I felt myself overwhelmed by the numbness of my body.  I desperately wanted to feel again, I was afraid that the neuropathy was only going to get worse and that I’d be without sensation for the rest of my life.

Then there was a defining moment, a second when I decided that I would feel again.  Returning to the techniques I used while going through chemotherapy, I imagined what it felt like before these new sensations.  I brought my hands to touch my flesh, and before my skin made contact I imagined how it used to feel. Then I slid my finger tip across my flesh,  the old memory became the new memory.  It was at this moment that I said:  “I am choosing to make my old memory the new memories.  I am reprogramming my experience of NOW, with the experiences of BEFORE.

Yet as I was experimenting with old techniques I realized I needed to fall asleep. The act had been difficult for some time now. I attempted my regular meditations of taking a bath or reading, but this time I tried something different.  As I laid there I imagined cute creatures like kittens, puppies and other baby animals doing funny things.  I thought about how soft they were, how adorable they were. Every thought became an experience, every moment was filled with an all encompassing cuteness.  I accessed memory after memory until my heart and mind were settled and I fell asleep.

I slept beautifully and awoke refreshed.

Refreshed cute animal

If you would like to read something else that is uplifting, consider clicking this link and following it to the next page.

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!

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.

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.

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.

A New Universe of Cancer

universe

This piece is a snap shot in time of Kaos giving birth to the Greek universe.

A New Universe of Cancer

Discovering you have cancer is akin to the death of one universe and the creation of another.  When I was diagnosed with cancer I wasn’t strong enough to be an advocate for my own health.  I was so weak of mind and body that I entrusted my oncology team to do the best for me.  After realizing my oncologist’s understanding of my cancer was far from what I needed, it opened another universe.

This universe was overwhelming, it spawned so many questions and put me in a state of awe.  Truly it was an awesome experience, not the connotation of that word, instead the literal denotation.  It opened my eyes and made me realize that though I was facing a terrible road I had an opportunity.  In this opportunity I could help others taking their first steps down their cancer journey.  I could work to spread awareness of NETs and carcinoids.

This series: A New Universe of Cancer focuses on my research and thoughts and what can be done to help those who are on this horrible road.  Its primary focus will be Advocacy and a secondary on carcinoids and NETS.  I wish to also address the needs of those hold the hand of those walking the road of cancer.

This site is a good place to start, it provides a good introduction to carcinoids and NETS: Click me!

Time – A New Universe of Cancer

Time

Time dripped like wax from a candle as I sat in the waiting.  The chair became a distant thought as an old man slowly ambled in front of me.  He moved sluggishly like he was in a daze.  I was in the oncology department so his movement wasn’t out of place.  After my treatments I typically moved like a zombie.

There was something about his steps that was different, he was anxious, nervous perhaps.  My doctor nearly bumped into the old man and a nurse asked him to stand out of the way.  He started to speak, he said that he wanted to ask the doctor one more question.  His voice was low, it had a worry-full energy to it.  I watched a small group of people walk by while noticing the man shift his weight back and forth between his two feet.

Once the commotion passed the nurse summoned the doctor.  The older gentleman had a stutter to his voice as he spoke.  “Is it years, a year, how much time do I have left?”

The doctor stood rigid, his eyes staring coldly.

In the pause the old man filled the space, I could feel the wary anticipation in the his voice. “A year?”

“Months, maybe months.”  The doctor replied with an almost robotic tone.

The old man’s head lowered.  I could hear his voice break as he repeated back to the doctor.  “I have months to live, how many months?”

“Maybe two or three.”  The doctor said before walking away.

I watched the old man take few steps, his feet sliding slowly across the tile floor. His shoulders slumped and I could hear him whisper to himself. “Months…”

If you would like to continue reading about my journey through cancer feel free to click on this link.