What is a Journey
Merriam-Webster defines journey as something suggesting travel or passage from one place to another; the journey from youth to maturity, a journey through time.
I believe a journey is a quest for change. Sometimes we hop into the car for a road trip, other times we’re kidnapped, tied up and tossed in the trunk.
What is it like to live with cancer?
The journey is a bizarre buffet. Mine began with a meal of misery, then I ate a dish of despair, followed by a supper of surgery and then I washed it all down with a cup of chemo. Once you’ve tasted cancer you will always have its flavor in your mouth.
What is Living with Cancer?
It is a journey through the land of life, a quest to find purpose in all the pain. A place where we discover that though parts of us die, others continue to thrive. It becomes the greatest guide, a teacher instructing us to laugh, to love, to live and learn.
This is my journey. Perhaps you can stick a tooth pick into one of these morsels to sample my three coarse meal of cancer.
September 8, 2016
September 8, 2016 No hats here, but plenty of fun time tickets available! Like this:Like Loading ...
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September 9, 2016. My third day of chemo
September 9, 2016 My third day of chemo was today. I had all kinds of body feels last night. It was like turning the first page and sampling the adventure that is to come. Shawn White Blog Living with Cancer NCAN Like this:Like Loading ...
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September 11, 2016. A newbie to Chemo
September 11, 2016 There are plenty of activities that are more fun than chemo. I hope all of you are having one of those days. Shawn White Blog Living with Cancer NCAN Like this:Like Loading ...
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September 16, 2016. Endless coughing
September 16, 2016 My diaphragm and lung muscles are going to be super strong with the amount I cough and expel friendly food stuffs! Shawn White Blog Living with Cancer NCAN Like this:Like Loading ...
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September 27, 2016. The Hair Fairy visit again.
September 27, 2016 Its super creepy when you run your hand through your hair and your fingers are completely covered with hair. On a plus side its like being a cat, and as we all know, cats are the coolest! Especially when they’re shedding. Shawn White Blog Living with Cancer ...
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September 30, 2016. Chemo is the Hair Fairy.
September 30, 2016 Chemo is like the Tooth fairy but instead of stealing teeth it steals hair. That’s why I think it should be called the Hair fairy. The Hair fairy is a jerk! Shawn White Blog Living with Cancer NCAN Like this:Like Loading ...
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October 4, 2016
October 4, 2016 I start my next round of fancy chemo therapy tomorrow. Some would describe it as flying though the air while sitting in a snazzy chair with fish hook shaped needle in your chest. It is my long day, so perhaps I will post a silly picture of ...
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October 12, 2016. Sometimes life is hard.
October 12, 2016 I have found that pushing a cart through the store and loading groceries on a conveyor belt makes me exhausted in ways my vocabulary cant adequately describe. Though it is a very painful experience I am grateful that I have this magical life to live. These experiences ...
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October 14, 2016.
October 14, 2016 In this life if you want to survive you have to grow, test boundaries and work hard for what you want. To face down your hardships you need fuel, you need food, you need whatever it takes to keep your heart and mind nourished. Some weeks ago ...
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November 4, 2016. Find triumph in the terror
November 4, 2016 Easily the most uncomfortable treatment thus far. I feel miserable and Im tired of going through this. It hurts and Im out of energy but this too shall pass. I look back and know it will become a tool that I will use to help someone else ...
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November 6, 2016. A Day of Chemo feels
November 6, 2016 The power of this fatigue is incredible. I have never felt so exhausted in my life. The draining energy sensation is felt all the way to the center of my bones. In these moments when all there is, is that one sensation, I do my best to ...
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December 6, 2016. Complain and let go of some pain
December 6, 2016 I know of no words that can effectively express the sensations i am experiencing. My body hurts in so many alien ways it is difficult to find peace or even the eye of the storm. But at least I have my fancy bag of tricks to find ...
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Experiencing Life, Experiencing Cancer
While experiencing life I have faced all sorts of challenges. Some have been OK but most have been terrible, that’s the nature of the journey. If cancer were a super fun time, then people would be taking summer vacations to visit. That’s not to say that there aren’t good things ...
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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 ...
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Frustration – A New Universe of Cancer
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 ...
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Sensations of Neuropathy, Find purpose in the pain
The enchanting music of Enya played from the bedroom nearby. The beautiful sound of water dripping into the soothing, hot bath was intoxicating. It was my first bath since I had my lung removed, the sensation was a heavenly experience. The water was a cocktail of skin nourishing concoctions and ...
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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 ...
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A New Universe of Cancer
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 ...
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Suffocation – A New Universe of Cancer
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 ...
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I feel like 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 ...
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Nightmares and Fear – A New Universe of Cancer
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 ...
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Health Advocate – A New Universe of Cancer
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 ...
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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 ...
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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 ...
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Change – A New Universe of Cancer
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 ...
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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 ...
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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, ...
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Life – A New Universe of Cancer
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 ...
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A fine day in deed
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, ...
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Power Advocacy Podcast
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 ...
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Gallium 68 Scan A New Universe of Cancer
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 ...
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Sick – A New Universe of Cancer
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 ...
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Fear – A New Universe of Cancer
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 ...
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Sleepy – A New Universe of Cancer
Sleepy 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 ...
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Growth – A New Universe of Cancer
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 ...
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CSO – Personal Advocacy
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 ...
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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 ...
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Power Advocacy Podcast 2
Power Advocacy Podcast 2 Welcome to the Power Advocacy Podcast 2. In this episode I present Getting to Know Yourself with Shawn White. If you would like to read more about advocacy consider clicking on the following link. Like this:Like Loading ...
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New Orleans – Personal Advocacy
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 ...
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April 6 2017 A Journey in New Orleans
April 6 2017 Time for a new day. Its time for stuff and things. Heading to the hospital for more tests. Soon we shall follow the helpful blue line, the one akin to the yellow brick road, but made of tape. Its the line they put on the floor to ...
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Love Change and Succumb to it
Love Change Really Love Change. If you would like to embrace life and love change take a look at Love. Like this:Like Loading ...
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Clog – Relfections
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 ...
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Damaged – Reflections
Damaged My ceiling fan creates a scraping sound as it turns followed by an occasional clink. The curtain creepily twists and dances to the movement of a subtle wind. A cold steel vibe swirls and floats through the room. It’s not the wind, maybe a hallucination from exhaustion, but it’s ...
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NOLA – Personal Journey
NOLA The moon light sliced through the clouds speckling the landscape with a silvery glow. Rain dripped from the sky coating the windshield with a layer that sloshed against the wipers. The ground was slick and my eyes were tired, the combination made the drive taxing as we drove over ...
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Moments – Reflections
Moments I committed myself to CenterPoint Hospital and it was the best decision I’ve ever made. It wasn’t the best of moments, but it glowed with my purpose, the purpose of personal advocacy. Personal Advocacy transcends the body and the mind, it encompasses both perfection and harmony. If we want ...
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Neuroendocrine Specialist
Neuroendocrine Specialist A few weeks ago, I journeyed to the mystical land of New Orleans. I went there to meet with a neuroendocrine specialist. This was supposed to be the visit, the one that would give me a leg up on the future. We got to the office a little before eight ...
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Wonderful – Reflections
Wonderful You can see that I have all sorts of things to say, new ways to interpret reality, reflections that illuminate old avenues. The real question is though, how do I feel? Strip away all the things and processes and really share my feelings. How do I feel? Well the ...
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Disappointment
Disappointment When the world is up in the air and nothing is certain but uncertainty, the experience of life becomes troublesome. I was nervous before leaving Saint Louis for New Orleans. There were so many pieces of the puzzle without guarantee. I decided to make the best of whatever happened, ...
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Edges – Dreams
Edges I had a dream last night, it was a rare breed, so positive and memorable. Its been a time since I’ve been able to remember a dream. I’d like to share it with you. It was a dark sky, one slightly filled with all the stars in the sky, ...
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Memories – Refections
Memories Memories are something we take for granted. They are little creatures that run around doing their things, reminding us of all the moments which made us who we are. They tell us who should be special and why. As I return to clarity I can feel my mind settle ...
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Big Pile of Disappointment
Was it really a big Pile of Disappointment? Last time I spoke a lot about how my trip to see the NET specialist was a big pile of disappointment. I hoped that with that doctor it would be a moment I could ask him questions only a specialist could answer. ...
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Confirmed
Confirmed I mentioned the only reason I could embrace the moment was because the hospital confirmed they received all my medical records. So, what does a confirmation mean if the doctor never looks at what you sent them? The answer is nothing. Unfortunately, personal advocacy means you must continuously put ...
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Hope Lodge
Hope Lodge We stayed at the Hope Lodge in Kenner. Had it not been for this place the trip to New Orleans would have been impossible. The staff was friendly and the environment was inviting, there was a huge kitchen and an even larger dining room. They give you plenty ...
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Birthday Sensation – Reflections
Birthday Sensation There are no moments in life that are worthwhile to waste. There are times when we might lose something special to us. This special something could be a someone, it could be a thing, perhaps even a sensation. Treasure the significance of your moments, because the things you ...
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Emotional Land Mine – Reflections
Emotional Land Mine Recently I’ve taken a few moments to reflect on the events of my life. There is so much I’ve forgotten. At certain instances its feels like I stepped on an emotional land mine and was blown to pieces. Somehow like a ghost I’ve been able to collect ...
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Sight Seeing
Sight Seeing Sight seeing in New Orleans was wonderful, I’ve never been to such an exotic and adventurous city. It was a haunting place at night and a gorgeous land at day. My lady friend and I traveled and explored as much as we could. We had far too many experiences than ...
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Never-ending Journey – Relfections
Never-ending Journey In a world of regret, of sadness and shame we are prone to experiencing a myriad of pain before we find our way. Each way is a road leading to another path of pain. It is a never-ending journey, but with each step we discover more about how ...
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Crying Pain – Reflections
Crying Pain In the middle of the night I called one of my closet friends. A true friend, one I consider a brother. My friend drove me to the hospital, quickly we got a room and my pain inched forward in intensity. At its peak I was crying, clutching my ...
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Night Time Slumber
Night Time Slumber It is late and some time ago I laid down for a deep rest, searching for a delightful night time slumber. Perhaps the universe wants me to be awake, maybe it has a desire for me to explore my feels and release them into the ether. As ...
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The Life Coach
Life coaches and gurus speak about systems and methods to achieve a prosperous life. Don’t feel bad when they don’t work for you, most likely they don’t work at all. These people make a living by pretending to be your friend and selling you advice. If a trained psychologist or ...
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Burglary, theft, betrayal and a friendship destroyed
Our worst decisions often lead to the greatest rewards. It is from these mistakes we acquire the greatest wisdom. In the last few months of 2017 a friend came to me needing help, and so I helped. The price I paid was far more than I expected, and for my ...
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NCAN Patient Conference
Our disease is a hard sea to sail, its dark and the waters are rough. NCAN’s patient conferences are the lighthouses we need to see. The opportunities are vast and have great potential. The world’s best are at your disposal. Complicated questions are answered, resources are revealed and for a ...
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