a new universe of cancer

A New Universe of Cancer

This is a tale, a journal about my quest in life, a walk down one of its many roads. A New Universe of Cancer is a series of blog posts that illustrate my journey, its an opportunity for you to read my journal.

Come with me and join in my adventure.  Watch as I transform and learn how become a better human.  Move with me as I overcome hardship, embrace love and find my way in these turbulent waters as I swim through the abyss.

In the following blogs you will discover who I was at the beginning and then watch who I become.  It is an opportunity for you to look at yourself and see that you are where you are now.  But as you read, perhaps you will begin to change, perhaps you will move down the very same road I’m on.  You will take the next step as I take my step.  Then at the very end maybe you will be able to look at yourself and see a change.  Perhaps, finally at the end, you will have gleamed more from all of this than I have.

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.

 

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.