How Bad is Neuroendocrine Cancer​?

How bad is neuroendocrine cancer? I wondered this myself when I was first diagnosed. A myriad of thoughts crash through your mind when you are told you have cancer. What kind of life will I live, how painful will it be, and will I survive?

I often say getting cancer was the third greatest blessing of my life. It taught me what hope is, how to truly live in the moment, and understand the importance of having a legacy. It revealed to me the full breadth of the human experience, offered me twilight wisdom, taught me how to mourn, and savor every second. My cancer journey was a gift that I will treasure forever. If a genie came before me and offered to wash away every hurt and horror I was forced to face due to the cancer, I would refuse his offer.

Why would I turn him down? At my core I believe every hardship we face is an opportunity to learn how to help someone else. It is a gift that grants us the opportunity to serve as a lighthouse at the edge of the sea, to help wayward ships caught in the storm find their way home. I love my cancer journey, and though I would never want to repeat it, and I would never wish it upon anyone else, it is, and always will be a part of me.

As you read my journey through neuroendocrine cancer, you will discover sections that are absolutely horrendous and eye wateringly terrible. Though these passages may at times be tough to read, I want you to know that I wrote this with love. I love every hurt, harrowing second, and soul crushing moment.

I want your to live with hope, joy and love your sadness

• Hope: I want you to know that hope is not surviving. You could be laying in your deathbed, waiting for the ticks of time to bleed away the last moments of your life, and even then, you can still have hope. Hope is making the most of your moments, and celebrating your seconds with the people you love and cherish. As long as you can hold the hand of someone you love, and spend time with those you adore, there will always be hope.
• Joy: I want you to know that we should be seeking joy, instead of happiness. Happiness is the candy sprinkles on the delicious doughnut of life. Thank God this delicious doughnut is not a candy sugary sweet. Instead it is pure and good and full of peace, because this pastry is made of joy. Joy is being thankful for everything you have, even when you no longer have it.
• Sadness: I want you to know that sadness is a gift. When we lose someone of such significance that their absence causes our body to exhibit a physiological reaction, that is powerful. Truly it is awesome in the truest sense of the word. It means that we actually knew someone who was real and we loved them. Love is a gift, and so too is the sadness we experience when we lose someone special.

Forever I will wear my neuroendocrine cancer ribbon on my heart. It is a zebra striped ribbon that represents the idea that when you hear hoof beats, it is not always a horse. People who live with net cancer experience a journey of misdiagnosis, poor treatment, and heartbreak. This is the very same tale I experienced, but it was not the end of me, just like your hardships will not be the end of you.

You are more than your disease and pain. There are greater things on the way for you to cherish every day. Life is beautiful, magnificent and amazing and I have faith that no matter how you feel, you will once again live in delightful and wonderful ways.

…and now we begin.

Nestled within a mound of blankets, I listened to the muffled sounds of my bedroom. Individually, they were annoying; together, they were an orchestra, a comforting cacophony, a loving lullaby. Outside my cave of warmth was a frigid bedroom. Like a vampire, the morning wind leeched the heat from my room. Leaky air whistled from a poorly sealed window. An electric hum played with a rhythmic rattle. The ceiling fan spun, releasing sounds like tearing paper with an occasional crunchy click.

Blissful was the moment, safe and serene within my sanctuary of warmth.

As the sun rose, my inside parts advised me to wake from my slumber. Lying in bed, I relished the comfort of my cocoon. I yawned, and with a deep breath, I felt something—an uncomfortable itch, a juicy sludge—within my chest. I coughed to clear whatever it was. Instead, it moved a gurgle of something, a certain something somewhere. Again, I coughed, and the slick thickness found its way into my mouth; it was a viscous, coppery, sticky… slickness.

The taste forced me to open my eyes. Something strange was happening… I needed to spit this out, to get this mystery liquid out of my mouth. Reluctantly, I reached my arm beyond the barrier of blankets.

Intense barely describes the cold sensation that wrapped my arm. The temperature contrast was excruciating, so cold, so shocking… it made me gasp for air.

My deep breath rattled my insides. I erupted into a coughing fit, and with each hack, a glob of thick, mysterious goop filled my mouth. My fingertips quickly discovered and grabbed a tissue box. Eagerly and with haste, I pulled it under the covers. Slowly, my flesh thawed, warmth returning to my skin.

After a moment of recuperation, I placed a tissue against my lips and spat into it. Cough after cough, I went from one tissue to the next.  It hurt; a dry pain was scouring my lungs for this never–ending nastiness. I continued to hack until all the tissues were sopping wet. “What is going on?”  My heart worried; I needed to see what was on these tissues.

Raising my head from my cocoon, I looked down. It was cold, but the chill paled compared to my terror. My heart sank into my stomach, the world slowed, and my thoughts raced. At that moment, I realized every tissue was soaked in crimson red blood.

I parked my car, slid from my seat, and was greeted by a cold wind against my cheek. It was already difficult to breathe, and it became more challenging through my chattering teeth. Making my way inside, the cold chill became less as my flesh began to thaw. I was met by a nurse and taken to an office to hear my tale and run the typical tests. 

After she left I sat in my quasi-comfortable chair, nervously wringing a magazine between my hands. I stared through an arrow slit-shaped frosted window, admiring the leafless winter trees. Though there were no buzzing bees, the office was fluttering with all sorts of energy. I could hear the murmur of talking through the walls, the tip taps of shoe-covered toes, and the hum of the lights above.  A time passed, my body warmed, and then I was welcomed by a knock on the door. 

I was greeted by the friendly face of my primary care physician. His youthful insides gleamed with a pleasant smile as he sat across from me. He clicked his fingers against the keys of his computer and then turned toward me. 

“So, what appears to be the problem?” His voice was soothing and strong. 

“I started coughing up blood this morning.” I said.

“What kind of blood are we talking about? Is it pinkish, streaky? How would you describe it?” 

“I have some with me if you want to see it.” Reaching into my coat, I pulled a blood-filled Tupperware container from my inner pocket.

“Sure.” He looked excited. “Can I see it?” He outstretched his arm.

“Are you sure?” I was surprised he wanted to hold the Tupperware container in his hand.

“Yeah, let me take a closer look.” He accepted the container and tilted it from side to side. He watched the blood slide from one corner to the other. “We need to get you in for an x-ray. I bet this is pneumonia. I am going to send you next door to get some tests.  I’m sending you home with some steroids and a Z pack.” 

We shook hands, and I went on my way.  He sent me for an X-ray next door. I collected my belongings and stepped outside. A blast of cold air reminded me how terrible the winter was as it tore through my coat and clothes. I pulled my arms across my chest and headed into the hospital. Stepping inside felt good, and I looked around at its interesting décor. It looked like an old craft store was turned into a hospital, strange to say the least.

The front desk guided me to radiology, where my inside zones were photographed with fancy X-rays. Dreading the intensity of the outside air, I paced the hall and made a call.

I called one of my greatest friends, the amazing Ashlee. We chit-chatted small talk for a few minutes before I broke into the business of my bloody cough. She was concerned but played her hand well, and her words comforted my spirit. After saying goodbye, I pulled my coat close and dared the outside world. I ran to my car, unlocking it from afar. I hopped inside and slid the key into the ignition. It struggled to start, and when it did, lukewarm air poured from the vent. It smelled like maple syrup; it was thick and sticky, clinging to everything, causing the windshield to look greasy. I sighed, reached for a rag, and attempted to clean it away so I could see. It did little to improve visibility; mostly, it created snot-like oily streaks that made it more difficult to see. 

Closing my eyes, I took a deep breath and ran my fingers through my hair. I sat for a moment, soaking in the sad scene. Wind howled around the car, and fluffy snowflakes collected on the grass. It took me a few moments to recollect my cool, but once I did, I clicked my seat belt into place, pressed play, and drove away.

I was sent away with the good news, I had pneumonia. It eased my soul and helped me navigate the red waters I walked, but the treatments didn’t stop the blood from pouring from my lips. Each day seemed worse than the last, but as with any other hardship, we become accustomed to it.

The doctor repeated the same treatment over and over. He heard hoofbeats and thought it was a horse, but he never checked to see if it was a zebra.

Five months passed, and my crimson cough became my life. It was a strange, lonely time of confusion and pain. No one likes to be around the person coughing up blood. I can’t blame them; it’s scary. Witnessing someone spit up blood is horrific; it is a clear indication of disease and death, and people like to avoid those things.

It was a party like no other. The walls were a sterile white, and fluorescent lights set the stage for the festivities. I was nervous, anxious, and cautious, perhaps, as I sat in an uncomfortable hospital chair. My stomach ached, filled with uncertainty and fear as I waited for them to unromantically jam something deep into my throat.

It was a party, and like all good parties, we needed to indulge ourselves with some liquid courage. The liquid they gave me wasn’t poured down my throat but sprayed down my gullet. As it began, the nurse gave me a half smile, the kind opposite of comforting, and said, “This is going to taste really bad.” I opened my mouth, and she sprayed.

“Oh my God!” She was right. To give you an idea of its flavor, imagine chewing a mouth full of aspirin mixed with blood and embalming fluid. This wasn’t moments of discomfort. It was twenty minutes of pure agony. Twenty minutes, and the flavor never subsided.

When my gag reflex eased away, they continued their romance. I crawled onto the medical table, and then they started sticking me with things and injecting me with stuff. A few moments later, I fell into a deep twilight sleep.

I remember waking in a fit of tears, not sure what was or where things were.

It wasn’t that easy; the journey never is, nothing is easy. To have these robots poked into my side, I needed to see a fancy surgeon. One who specialized in friendly thoracic cuts, so she sent me to a thoracic surgeon. I called the doctor’s office, set up an appointment, and went in to hear what he had to say.

I waited in an old, worn, and aesthetically out-of-date office. It was a long wait, so I spent a lot of time looking around at things. There was a lot of archaic equipment in the room. It was a creepy place, to say the least. Once he entered the room, my heart raced. The reality of what was to be, started to become real. This surgery was going to happen. I swallowed and listened as he began to speak.

What I thought would be a conversation about a sleeve resection became something worse. My tumor went from benign… to malignant. It went from no cancer… to stage one cancer. From a few days of recovery to several months. It went from the removal of a small piece… to the loss of my entire lung.

He said the C word… Cancer. When that happened, my world twisted, turned, and wrapped in on itself. I was flooded with feelings, and it was terrifying, mind-numbing, and overwhelming. The world ceased to be as time seemed to stop.

Then he asked me when I wanted to come in for the surgery. His question broke my stupor. “I want a second opinion, do you know any doctors you would recommend?” He was not pleased by my request and refused to provide me with a name. He told me I needed to get the surgery, I told him I needed a second opinion, so I left.

I drove home angry and afraid. My world turned upside down, and my pieces were falling out. I was so angry I wanted to shout. Clenching my hands against the steering wheel I took a breath, the gurgle of blood within my chest rattled and I coughed in a frenzy of agony. It hurt, and I hurt, but no matter how much pain I was in, I wasn’t going to let someone cut out my lung without at least a second opinion.

I did some research and found another doctor, he was out of network, but he was the best I could find. I sat in his pristinely beautiful office. It was such a stark contrast from where I just was. He walked into the office with casual confidence. He was cool, youthful and comforting. Sitting across from me he smiled and began to speak. He said he agreed with my doctor’s diagnosis and procedure, stating my lung had to come out. I sighed. “Are there any other ways I could have this tumor removed?” I asked.

“Yes, there is an advanced surgery that uses a robot that could remove it. But, there are only three doctors in the United States who are trained to use it, and only one has ever performed the surgery. Additionally, it will be at least $100,000 out of pocket.” He paused, clearly he could see the disappointment in my eyes. “Look, your doctor has had a lot of people die on his table, but he has had far more live. If it were myself, or my daughter getting this surgery, I would use your doctor.”

“Okay.” I thought to myself. Even if this doctor was just blowing smoke up my ass, I had to believe him. At this point what options did I really have? I could live feeling utterly terrible, barely able to breathe and constantly spitting up blood, or I could have it removed. I eased into what had to be done.

The next day I called the thoracic surgeon’s office and setup an appointment. When I went in to see him, he sat across from me and asked me when I wanted to get it done. Traditionally I found doctors always wait forever to get anything done, so I assumed the surgery would be in a month. I asked when he wanted to get it done.

“How about Thursday?” It was Tuesday! There was no way I was getting onto that operating table that soon, especially since I had a 20% chance of dying during surgery, and another 20% chance of dying in the following thirty days.

“No, we aren’t doing this on Thursday.”

“Mr. White, we need to get in here to remove the tumor.”

“Look, you said this was an indolent, slow-growing tumor. What is it going to matter if I give myself a few weeks to live, before you take it out?”

He pressed again and I refused. I wanted to have a chance to live my life before I was sliced and diced on his operating table. I gave him a date two weeks out and I left.

In those two weeks I learned to live life to the fullest. Every ounce of fear, worry, and inhibition went out the window. I played, laughed and celebrated every sweet second life had to offer. It was beautiful.

One day I was sitting outside of my favorite coffee house drawing, and some lady pulled up to the stop sign at the end of the road. She asked me what I was drawing, so I showed it to her. Then she asked me if I wanted to go to a celebration . “Yeah.” I said, then put my drawing in my car, and jumped in her van.

I didn’t know where she was going, or how I was going to get back, because I was going where life was taking me. Still to this day I don’t know where we went, but it as an amazing party. I met so many enriched and spectacular souls and it was a delightful and wholesome night I will treasure forever. Sure, it was absolutely unwise, but when you are staring down the barrel of death, pain and agony, every other risk seems insignificant.

What to Say Before Surgery​

I knew the cover was meant to mute my anxiety. I nodded, and the nurse placed two warm blankets on me. It felt good, and it reminded me of a welcoming massage. 

Off and on, people would come and go, entering the room to ask me this or stick me with that. After some time, a man walked in and asked me if I wanted an epidural, I was hesitant at first, but I acquiesced. They injected something into my IV, easing me into euphoria and releasing my anxiety.

I thought it wasn’t so bad until people began to move fast and stand all about. They leaned me forward, and I became frightened. They spoke with urgency telling me everything was going to be alright. I felt a terrible pain, followed by a wet warmth across my back, and then nothing. I didn’t even notice laying back down as I felt a sterile-steel fog cover everything. The bed vibrated like it was being wheeled somewhere, and then I was lifted into the air and set on a cold table. People were talking, but I couldn’t see them. 

“Mr. White?” I heard a woman’s voice.

“Yes…” I groggily replied. 

“Mr. White what are we doing today?” She asked.

“You’re here to cut a tumor out of my lung.”

“Which lung Mr. White?”

“My right lung.”

I could hear movement and the clatter of metal things. 

“Alright, Mr. White, I want you to start counting backwards from ten.” This time, a man spoke.

“10… 9… 8…” My world disappeared.

I found myself in a deep sleep. I was falling, yet no wind washed over me. A soft, rhythmic pulse echoed through a liquid-like something around me. The surface of my flesh felt frigid and slimy with sweat. My eyes were swollen and heavy, and all I could see was an eerie grey light slide into my sight.

My weight shifted as I felt like I was falling. I watched the sterile steel fog disappear against an endless sea beneath me. It was darker and deeper than any ocean, radiating a nothingness that chewed away the chill. It moved in unnatural ways, crawling like tenebrous waves of wax.

Occasionally, I would hear a pop or click behind me, but it was not enough to draw me from the terror below. My face neared the leeching void; the closer I came, the less cold I became. My deep, dark parts told me this darkness was the end, and to taste it meant oblivion.

A ribbon of silvery light encircled my sight, and I felt a shivering cold that caused my teeth to chatter against something in my mouth while I was asleep. There was a thickness in my throat, but I could breathe. The air was salty but smooth.  Oh my god I could breathe! 

I started to hear voices. “Mr. White… Mr. White…” They were speaking so much it felt busy and confusing. The light increased in intensity, and so did my disorientation. 

“I can breathe better.” I remember saying to the doctor as they wheeled me somewhere and I fell asleep.

Pain Scale 1-10​

I woke from the twilight of my medicine-induced sleep. My shoulders shook, and my body quaked under the pressure of so much pain. With each breath, I sipped my hospital lair’s sterile, stale air. I was caked in scary sorrow and weary wonder as my loved ones feared I would take my final number.

It was dark, shadowy, and strangely still; my insides felt oddly ill. Though afraid, a soft, soothing voice warned me what was to come. It said, “Feel the pain, but not if it drives you insane; with too much medicine, your healing will never begin.”

She tried to tie my mind to a silver string that could set me free. Ultimately, the pain would kick and scream, deafening my ears to all the lessons I learned that day. She disappeared into the darkness as my mind sunk away into a soft, empty sleep. 

Hours later I awoke to an incessant beep and an angry nurse treating me like dirty feet. 

“What is that?” I asked.

“Nothing don’t worry about it.” The nurse replied. 

It was a different nurse. She did not possess a soft, soothing voice; instead, it was sharp, strong, and furiously inflamed. She walked with force, jutting this way and that like bolts of lighting in a trap. She lacked the gentle glide of my first nurse guide and spoke like she was looking for a fight.  

The beeps continued till there was a change in my soft, empty sea. The tide turned as I began to feel a throbbing burn. It was hot and glowed with bright light; it started on the point of a speck and then sliced through my insides. I clenched and gasped for air as my insides screamed. It was already too much, and I begged to be set free.

My world became dark and grim, like inside the reaper’s grin. I felt my body dissolve into a pool of milky meat, leaving only my squirming nerves. The throbbing burn in my chest spread into my brachial plexus becoming a nexus of the searing flame. The pain became a light, it was the only luminescence I could see. It moved through me like tentacles of molten stone melting and burning me away. Slowly, my mind began to fray as I knew there was no way I could escape. I wanted to die as I realized my crying and pleading fell on deaf ears. I feared it would never end; seconds felt like minutes in this half-hour horror.

Someone came and saved the day, bringing the gift of the painkiller I desperately needed. I learned to fear that beep; it was a warning my epidural was about to be emptied completely. With the numbness in my nerves, I floated back into the soft, empty sea of peace.

Hours passed as I slept, and slowly, my ears opened my eyes to the sound of a distant beep. My body felt like gooey glue, starting to slowly harden. Waking from my dreamscape, the beeps and bleeps grew louder, and my heart began to hurry with worry. I felt a thundering boom in my blood, and the air shook. My eyes stared with fear as I neared the whirlpool of tremendous torture. 

“No. No. No.” I muttered a plea, begging to be given a reprieve from the coming insanity.  “Oh.” My fingers twisted the sheets. “It’s running out. Please help me!” I begged the nurse to refill the medicine, masking the pain.

At first, it felt like a warm blot of water was sitting inside my chest. Then, I could feel it boil and spread as the pain began to swell. In anticipation I stiffened and clenched my teeth. 

Darkness crawled in, and my lungs emptied with a scream. My legs kicked, and my arms thrashed, assaulting the invisible enemy within me. There was a monster inside my chest, and it was eating me alive. It was more than a nagging nibble; its maw was chomping hard, and the pain was making me insane.

An Introduction to 10 Level Pain

I thought I knew pain before my surgery, but I was wrong. I did not have the slightest clue what real pain feels like. Within 14 hours after my surgery I went without painkiller for a total of 2 hours. The first time was for 30 minutes, the second time was for an hour, and the final time was for another 30 minutes. This was the kind of pain where you scream so loud you lose your voice. The kind of pain where every second feels like an hour, and the pain literally lasted hours. Though these days I often make light of the experience, it was horrific. Horrific for me and my love ones. I can only imagine the heartbreak, powerlessness and frustration they must have felt watching me writhe in agony, knowing it was simply a signature standing in the way of stopping my pain.

These days I say these painful moments were a character building experience, but that is because I firmly believe that every hardship we face is an opportunity to learn how to help someone one. I love this experience, but not because I am a masochist. Instead it taught that there is no mechanism inside our mind that we can flip to switch off the pain. If there were some kind of lever to pull I would have found it. This is important, because I use this wisdom in my massages. I use this understanding of pain when I work with my clients. Anytime, anyone tells me they hurt, I believe them. I don’t need any evidence.

So many people make the pain of others worse by saying they can just turn it off. Anyone who thinks this, has never felt true 10 level pain. 10 level pain is inescapable, it is all-consuming and annihilating. 10 level pain is mind meltingly maddening, but it can be managed. There are ways to walk through it without letting it destroy you. Sure, you cannot flip a switch to turn it off, but you can develop a relationship with it. I know you can, because I have done it. I am not a superhuman, nor am I a wizard or bestowed with any more divine light than you. I am just a man, just a regular ol’ human, and I have faith you can find your way the storm too.

Hans

I was in the ICU for two weeks, because they couldn’t get my pain levels under control, but once my pain was low enough for me to leave, they set me free. I had to live with a friend for awhile because I wasn’t able to take care of myself. I could barely breathe, walk or even sleep. For about the first week I couldn’t even eat. I visited with many friends and love ones over this time, but the most important of all these meetings was with my friend Hans. Hans was such a fascinating man, he was the type of guy who lived life to its fullest. If he dreamed it, he did it.

I needed to go for walks throughout the day, so I could rebuild my lung and body after the surgery. It was a hot, sweltering day. The sun blazed down on my head and I struggled to walk faster than a snail’s pace. Each breathe I took felt like hot steam was burning down my throat. Every few steps I had to stop to catch my breath. As we walked I saw a big dog trotting down the street. The sight of such a powerful creature was terrifying, especially since I was so powerless to defend myself. Just months before I was attacked by a 160 pound mastiff. I narrowly survived that encounter, and I irrationally feared the dog as I walked beside Hans.

I expressed my dislike for the dog in the moment. In hindsight, I didn’t have any issues with dog, I love dogs. Instead, I disliked how weak and broken I was. I didn’t like how in one fell swoop all of my strength and vitality was sapped from me. I was heartbroken, I felt like I was going to die, and after reflecting on my life I had nothing to show for it. Sure, people liked me, other people enjoyed my ideas, creativity, and playfulness, but what had I actually accomplished that meant anything? I didn’t have any children, I hadn’t accomplished something that made the world better. I was just some dude, with a life that ultimately had no impact. In essence, I thought I had squandered my life.

At the end of the road was a giant concrete block, it was a cozy spot under some beautiful trees. Sitting down I sighed.

“Whats on your mind Shawn White?” Hans inquired.

I shifted and grumbled. “Hans I feel like I have wasted my life,”

Hans thought for a moment, then began to speak. “Shawn White, I have been all around the world and I have met many people. You are ahead of the game, you are ahead of the game.”

This was one of the most influential statements anyone has ever said to me. In the abstract, it might not mean much to you, but in that moment it changed my life.

His comment set into motion how I would live my life from that moment forward. It was then that I decided to leave behind a legacy, I would make something that would enrich the lives of others, even if they didn’t know my name.

At that moment I didn’t know what that was, but for the first time in my life I knew I had a purpose. I would do everything in my power to make sure I achieved it before I died.

How Bad is Neuroendocrine Cancer​?

How bad is neuroendocrine cancer​? The disease of neuroendocrine cancer is no fun by any metric, but it is made worse by the very medical system that is supposed to be supporting us as cancer patients. While it was a blessing that my thoracic surgeon knew about NET cancer, I, just like many other people with this disease are paired with medical professionals who know next to nothing about the illness.

Neuroendocrine cancer is a complex disease that requires a specialist to treat it. If you are being treated by a general oncologist, or by anyone who is not a NET specialist you are going to be walking into a world of hurt. When I started by cancer journey I didn’t know anything about my cancer, and soon I would discover my doctors knew next to nothing too. In fact my oncologist and my thoracic surgeon told me not to research it. This was the worst piece of advice I would receive throughout my journey.

A couple of weeks after my pneumonectomy I went back in for an office visit with my thoracic surgeon. In this meeting I learned he removed a softball size tumor from my right lung, my cancer had metastasized to my lymphatic system, and the aggressiveness of my cancer was far worse than he originally thought. My doctor said me I had an atypical carcinoid (though the modern nomenclature defines it as an atypical neuroendocrine cancer, or grade 2 NET), and I had stage 3c cancer.

Due to the aggressiveness of my cancer and the lymph metastasis, he wanted me to do chemotherapy. He referred me to see an oncologist and I set up the appointment.

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 enough to research it. In my first appointment I asked him:

• Is there any research on my cancer?
• Are there any specialists for my cancer?
• Are there any clinical trials for my cancer?

His answer was no, no, no. He made it very clear that chemotherapy, specifically the chemotherapy (cisplatin and etoposide) he was suggesting was the best and only option for my survival. Later I learned he was wrong and the use of cisplatin and etoposide are not the only, or even a typical best course of action for someone with atypical neuroendocrine cancer.

In fact, there are a plethora of other options, one being starting with surveillance post-surgery. I didn’t learn any of this until after finishing chemotherapy, when I became frustrated with my care and started researching my illness online. When I began my investigation on NET cancer I quickly discover the Neuroendocrine Cancer Awareness Network and their advocacy opened my eyes to the treatment and care I should have received.

Forgiveness

Forgiveness has been one of the central themes of my cancer journey. The pain and anguish I experienced led me down a road to truly see people for who they are. It helped me realize we are all June bugs bouncing through the night blindly. Ultimately, we are doing our best to find our way through the dark and wicked world. We are searching for the brilliant light of life to fill our insides with hope, love and joy.

I have forgiven everyone in my life who has hurt and wronged me, whether real or perceived and I hope others have the heart and compassion to offer the same to me. Just imagine how magnificent our world would be if we were quick to offer forgiveness instead of condemnation.

What Does Chemotherapy Feel Like?

What does chemotherapy feel like? I can’t answer for everyone, but I can say etoposide and cisplatin was horrible. Although getting cancer was the third greatest blessing of my life, nothing compares to the pain and horror I experienced during chemotherapy. Each round of treatment was comprised of three consecutive days of bleh. If I remember correctly, I woke up early on Wednesday, some time around 5 or 6:00 AM, drove to the hospital and then sat in a big vinyl chair. They would stick me with this and that, taking my labs and flushing out my port to prepare my body for the chemo-extravaganza. In total I would be connected to some kind of liquid drip for the better part of eight to ten hours. Then go home, and repeat it again on Thursday and Friday.

During these three days I could taste all sorts of terrible flavors in my blood. Yes, you read that right. I could taste the chemo inside of my blood. Sometimes I run across a smell that reminds me of what chemo tastes like, typically I encounter it when I open a new fridge in a hardware store, or when I smell chamomile tea. The taste was a hybrid of copper, plastic, chamomile, and yuck. In addition to tasting the chemo, I could feel a gently swirling vortex of nausea under my skin. I would describe it as a vertigo synesthesia within what I can only describe as my white blood cells. I felt worn and tired during these three days, but not to a debilitating degree, it was more a sluggish feeling. I could still do stuff during these days, but I was at the hospital so long, there wasn’t much I could really do.

After that, there was calm before the storm. On Saturday I felt relatively fine, then on Sunday my endurance began to wane, but by Monday I was out for the count. Typically I was bedridden for about 15 days after every chemotherapy infusion. Here is an excerpt from a book I am writing that describes a typical day of enduring the fallout of a chemotherapy treatment.

Beside me was a partially filled bucket of vomit.  My head ached, and my stomach spun. I was so tired; the chemo was sucking all the life from me. Ropes of exhaustion tightly twisted around my bones, and it felt like my muscles were tearing away from my body when I moved. On my side I felt a stab, it felt like a searing hot knife slicing through my flesh. Around that pain was nothing, an absence of feeling, like pins and needles. It felt like my back was wrapped in a blanket of numbness, a void, a nothingness except for the pressure of a rock. The rock was the hardness of a bone, a thing that was my scapula. (The chemotherapy was eating me alive while I was still recovering from having my lung removed.)

My hair ached and it felt like it was being ripped out from within. Under my stinging skin my blood felt like it was boiling with the heat of a chemical fire. It was hard to breathe, and my coughing made my chest muscles scream. I had a weight on my sternum and liquid under it. My lung felt swollen and engorged, fat and bloated. I would cough then retch. When I rolled out from my bed and placed my feet on the floor I would almost fall down, because my toes felt as numb as rubber and my joints could barely bend. The muscles of my legs felt like they were filled with glue as they moved. I knew I needed to eat, so shuffled my feet across the floor, slowly ambling into the living room. Placing my hand against the couch to catch my breath, I could not feel my fingers, I could barely breathe and all I knew was agony. Still, I knew I needed to eat. 

Eventually reaching the kitchen I fumbled till I made a sandwich and some soup. Try as I might, each time I tried to consume the food it would come right back up. I made meal after meal, until my stomach could keep it down. Eating was a nightmare, because it meant I would experience more pain. Taste and flavor was a thing of the past because everything tasted like ash. 

How bad is neuroendocrine cancer? It can be challenging, but I know you have what it takes to face this disease with all of your strength. Whether you are a sweet and petite little flower, or a gruff and rough tough guy, you have this. You will rise above the barriers standing on your path, and soon you will be looking back at this time with smiling eyes.

I firmly believe getting cancer was the third greatest blessing bestowed upon me. It taught me so many things, and I am thankful for each and every lesson I have learned.

• It provided me with twilight wisdom. This is the gift we are offered when are forced to face the end of our days. It grants us to the chance to glance back at our past to taste our regret and pain, so we may forge better future days. Whether we have seconds, days, months or years there is always time to steer our life away from regret, to take the time to mourn the days and stages of our life, and savor our delightful times while we are alive.
• It showed me the importance of a legacy. It made me realize that I need to do something significant with this life. Something good that enriches the lives of others in my absence, even if they never know my name.
• It revealed to me that suffering ends when we give purpose to the pain.
• It showed me how much I love helping others.
• It revealed how much I love massage, learning and helping people understand life, relationships and the world around them.
• It taught me empathy, forgiveness and patience.
• It instilled me with grit, force of will and an unquenchable thirst for life.
• It inspired me to dive into my pain so I could help others discover better future days.
• It showed me what it really means to hurt, so I could truly empathize and help others who are hurting.
• It mended my broken relationship with my father.
• It allowed me to become a more expressive and proficient writer.
• It inspired me to pursue public speaking.
• It made me want to become a leader.
• It created opportunities for me learn more about people, develop my personal boundaries, and stand on my own two feet.
• It taught me how to grieve, love, and let go.
• It put me on the path to achieve my destiny.
• And it brought me closer to God.

The road is rough, but it isn’t impossible. If you have been recently diagnosed, or have been battling neuroendocrine cancer for years, I want you to know there is always hope. Hope isn’t surviving, it is making the most of your moments and celebrating your seconds with the people you love and cherish. If you find yourself feeling alone on this journey there are others who have walked the same path. There are people who have invested their lives to be in the service of people like you. One such group is the Neuroendocrine Cancer Awareness Network. Reach out to them, offer them the opportunity to help and guide you, and I certain they will inspire you to live with hope too.