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.

Sight Seeing

Sight Seeing

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 I could ever commit to paper.

I remember walking through the French Quarter marveling at all the energy. As we walked the streets the urge to record what I observed was strong.  I chose to fight the desire, I fought the urge to sit and built a narrative, I chose to battle it because if I wrote what was happening, I wouldn’t be living it. I’ve always believed that the greatest component to telling a great story is knowing how to live one first.  We can write till our hands bleed and our knuckles burst, but if we don’t know what it means to live, no one will believe the lives we’re trying to tell.

Sight Seeing

Throughout my life, I never understood the obsession people had for this city, but after spending only a week there I now understand.

On one of the first days we were there we went to a beautiful park in Kenner. We saw all sorts of exotic creatures, ducks, cranes, geese, black swans, seagulls and pelicans. We watched a friendly otter swim in a lake and smiled at all the head bobbing turtles.  There was even a fancy, limply floating fish sleepily swimming sideways!

Sight Seeing

You didn’t even have to look closely to see all sorts of duck families, from fake mallards to real farm ducks. There were fun patterned duckies of all sorts of colors. Some looked all crazy like and chirped like squeaky birds, others had the red faces like buzzards. The park was amazing, easily the most beautiful one I’ve ever seen. It was hot like summer and bright like July. We walked, walked and walked.  It was a magnificent day to share many wonderful moments with my very special lady and the whimsical wildlife.

Sight Seeing

Links

Nola

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.  Unfortunately, I discovered he hadn’t reviewed my records and so my appointment with him was just a few notches above worthless.

With that said this was supposed to be the visit, and in certain ways it was.  The value of this visit was that I learned more about personal advocacy.  In the conclusion, I said: “Seeing a specialist isn’t enough.  You must take it to the next level, you must be the squeaky wheel, you must make noise! If you want to receive what you need, you have to talk loudly and walk with heavy steps.”

There were many valuable lessons to be discovered here.  The following is a step by step summary of what I learned from this experience.

Setting up an appointment with a new doctor

  1. Confirm: When you send your tests, scans, slides and medical history to a new doctor call and speak to them frequently until they have confirmed the arrival of your information.  How can your doctor read it if its not there?
  2. Confirm: Once they have your records call and speak with them frequently until they have confirmed that the doctor has reviewed your files and the pathologist has reviewed your slides.  How can your doctor help you if they know nothing about you?
  3. Confirm: Have them confirm in writing that your insurance is in network if they say that it is. How do you know you can afford this?
  4. Schedule: Once these conditions have been met, now you have the green light to move forward to schedule an appointment.

What happened to me?

  1. Yes! I’m in great hands!I sent my tests, scans, slides and medical history to the doctor’s office.  They confirmed it arrived.
  2. What?: When I arrived, my doctor said he never reviewed any of my medical records.  He said that the pathologists were still looking at my slides. Ask yourself, what is the purpose of seeing this doctor if they know nothing about you?
  3. How am I supposed to pay for this?: The hospital, front desk, and doctor’s office all told me that my visit was in network.  After the visit, they are now telling me that it was out of network and they expect me to pay a ridiculous amount of money for the services they claim to have provided.
  4. What happened?: I scheduled my appointment with the doctor before these requirements were met and I left with no valuable information.

Scans, Tests and Labs?

If the prospective doctor is ordering scans, tests and labs why are they wanting you to do them in their city?  If you must travel why don’t they have you do them locally where they might be cheaper and easier to access?

All in all, I learned valuable stuff, but at a very hefty cost.  The information I gained almost nothing directly to with my cancer.  There might have been some, lets dig into the big pile of the stuff that was discussed.

Links

Personal Advocacy

Disappointment

Disappointment

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, I was going to New Orleans, I was going to live in the moment, no matter what happened.

The only concrete reality I had to work with was that the hospital confirmed they received all the medical records, scans and tumor slides I sent them.  This fact, this reality allowed me to relax and discover the anchor I needed to live in the moment.

A Conversation

When I spoke with the specialist I was excited, there was nervousness in my breath.  This increased as our conversation progressed, the more I asked the more uncomfortable I became.  It didn’t take long before I realized I had invested more into this doctor than the doctor had invested in me.

I inquired about my scans, labs and slides.  I thought he was going to show them to me, explain the findings and share the results, but none of that happened.  It was like he hadn’t read any of the reports.  My tummy churned, there was a certain pain inside of me, my gut was telling me he hadn’t read anything about my medical history.  So, I asked, and the answer was no.  He hadn’t read any of the information that was sent to his office from Saint Louis.  He hadn’t looked at any of the scans, tests or reports.  The doctor told me he wasn’t even aware that I had a Ga 68.

Thank goodness I had my medical history in my hand.  Had I not of brought my Ga 68 scan and other records he would have known absolutely nothing about my medical history.

It was heart breaking to sit beside this specialist, a person I had traveled hundreds of miles to see, only to be let down again.

Conclusion

What was the value of this journey?  New Orleans was a beautiful place, I have never been to such an enchanting land.  The significance of this trip was in the magical moments I spent with someone very special to me.  It was in the lessons I learned and the accomplishment of being my own health advocate.

Seeing a specialist isn’t enough.  You must take it to the next level, you must be the squeaky wheel, you must make noise! If you want to receive what you need, you have to talk loudly and walk with heavy steps.

Links

Big Pile of Disappointment

Confirmed

 

neuroendocrine specialist

Neuroendocrine Specialist

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 o’clock.  My appointment was scheduled for 8am.  The doors were locked, for a moment I thought perhaps we were there at the wrong time.  After hanging out in the hallway for a bit, a staff person arrived and unlocked the door. The waiting room was decorated with all sorts of zebra patterns, it seemed like a fun looking place.  There was a door that led into what appeared to be an infusion room.  As I was looking around the receptionist had me sign some stuff then handed me paper work to fill it out.  There was an abundance of things to fill out.

So much to fill out I don’t know how they expected me to get it all done.  Ultimately, I prioritized what was important to me, which was getting the answers I drove all this way to get.  After a few minutes, we were moved into the examination room, in hindsight I felt rushed.  The vibe was like the staff or the doctor had some place to be and were running behind.

The doctor was friendly, he seemed like he was interested in listening and answering questions.  But the red flags began very early in our conversation, the first being that he didn’t know that we had just driven hundreds of miles for this appointment.  Another was he hadn’t looked at my medical history, my prior tests and scans or even my surgical notes.

In what I hoped would be the opportunity to explore my disease with a specialist became yet another unfortunate experience.  Another unfortunate moment stacked onto a pile of stinky disappointments.

Links

Disappointment

ochsner

Ochsner

ochsner

Ochsner

We traveled from Saint Louis to New Orleans and stayed at the American Cancer Society’s Hope Lodge.  There is no doubt this place was a godsend, this trip would’ve been impossible without it.

On the first day of scans we tried to find the hospital by following the GPS.  Unfortunately, the city had two streets with almost the exact same name and so we were taken to the other side of the city.  It was frustrating to say the least but we managed to make it to the hospital to get a whole truck load of scans.

Inside of the car it was cool and comfortable, but stepping outside into that muggy air was incredible.  It was strange to go from quasi spring/winter air to the summer heat.  There were stingy and buzzy bugs flying this way and that.  We walked in and registered, they told us to follow the fancy blue line.  It was the guide that would take us to the testing area.  I felt like it was like the yellow brick road, only a different color and much thinner.

They gave me a cool salmon colored bracelet.  It was that fancy stretchy tape stuff, they used it to hold the IV in my arm in place because I have a latex allergy.  Then they gave me my octreotide dose and sent me back into the waiting room to hangout.  For the next hour and a half, I drank pool water flavored beverages until it was time to get tests.   I had some conversations with the locals.  I was attempting to ascertain some good spots to eat fooduals.

Finally, the time came and I headed into the special room and laid on my back in the machine forever.  I surprise myself by the extent that I’ve gotten used to these devices. For the rest of this day and the next I spent a great deal of time in these tubes chilling out to the sound of clicks and pops.  All in all, the time spent getting the scans was quite pleasant.  If there is one thing I must say about Ochsner is that their employees are very friendly.  The hospital was quite pleasant.

Links

New Orleans

Neuroendocrine Specialist

Expectations

 

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 the enormous bridge.  In the distance, limbless trees reached for the sky behind them was an eerie blanket of crimson. As we drove into the city the haunting vibe increased, the spirit of the air was strange for my tired and wary heart.

We drove down a lonely road, it looked run down and haunted with shadows. Following the directions of the GPS to a dimly lit multi-level building, we pulled through a narrow drive way and parked in the roundabout in front of the Hope Lodge.  Our bodies were fatigued and our muscles hurt, we were finally glad to arrive.

When we woke up the next morning the vibe was literally a difference of night and day.  It was warm and comfortable; the atmosphere was loving and the heart of the land was good.  The contrast of the land’s spirit was unlike anything I’d ever experienced.

We spent all the time we could exploring and enjoy the beauty of New Orleans.  Though the swampy, bridge saturated city was a fun adventure the air was thick and hot.  Each breath was such a challenge to breath I found myself panting for air most moments.

Though the NET doctor failed to meet my expectations I have the wonderful memories of this enchanting city.

Links

If you would like to continue reading about my NOLA adventures, or would like to read more about personal advocacy feel free to click on one of these links.

New Orleans

Hope Lodge

Sight Seeing

Ochsner

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