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.

sensations

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 detoxing medicine. The dim light of the room was romancing my soul, I could feel my spirit begin to rejuvenate.  I ran my finger tip along the surface of my palm, the texture was exquisite.  These are the moments I take myself back to as I sit here thinking about the past.

These sensations are a distant memory, now my finger tips are numb, they tingle with the sharpness of needles.  When I slide my finger across the surface of my palm the sensations are delayed, lacking the sweetness of touch.  My feet are like rubber shoes and burn like they are being licked with fire.

These are the haunting reminders of the lingering ghosts of chemo.  There are no small prices to pay when it comes to cancer.  Everything you do, every choice you make comes at a cost.  Though I sit here experiencing these less than pleasant sensations I do not regret the choices I have made.

These sensations are gifts, they are tools, they are a reminder of the places I have been, the worlds I have discovered.

Shawn White Blog

Living With Cancer

NCAN

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

experiencing life

Experiencing Life, Experiencing Cancer

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

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

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

Shawn White Blog

Living with Cancer

NCAN

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

December 6, 2016

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

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

Shawn White Blog

Living with Cancer

NCAN

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 become one with it. There is no sense in fighting something I cannot stop.

To fight the sensation is to squander the potential of the experience. It doesn’t make it any easier, it simply shows value to a moment I might have otherwise not saw.

Shawn White Blog

Living with Cancer

NCAN

 

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 I was down, lost and depressed. I was lost in the moment and angry, lonely and in desperate need to grow, survive and to thrive. I felt imprisoned within my own home, I was lonely and bored. I felt healthy for the first time in ages and I was stuck where I was. It felt like my feet were encased in a block of cement.

I was on the phone with a close friend of mine Darnel. He reminded me that I have everything I need right in front of me. If getting healthy is what I needed, then I could do all the exercises I needed from the safety of my home. I could read and research and that I had the ability to accomplish anything as long as I set my mind to it.

Sometimes all we need is that spark, a small flame to reignite the pilot light of our heart. It is a powerful thing to witness how much influence such a small spark can have on the human soul.

Shawn White Blog

Living with Cancer

NCAN

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 whether good or bad are better than none at all.

One day I will look back at moments like these and use what I have learned to empathize and inspire and to help others help themselves.

It gets better, we get stronger, we learn and we grow from it. If we put our positive vibes into the universe they will return to us.

Shawn White Blog

Living with Cancer

NCAN