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

Hope Lodge

Hope Lodge

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 of space to keep your cold or dry groceries. Additionally, fresh food was put out every day for your eating convenience.

The rooms were spacious, clean and well kept.  This place was easily more comfortable than most of the hotels I’ve stayed in.  We stayed on the second level, I tell you what, that room’s AC worked tremendously well.  Walking into it was akin to leaving the sweltering humidity into a dry winter wonderland.  It made a great night of cuddles, because it was way too cold to do otherwise.  Of course, we could have just turned down the AC, but where’s the fun in that?

Hope Lodge

Online there seems to be an abundance of zebras, but the connection isn’t the same as meeting another in real life.  When you meet someone with cancer a social bridge is automatically built.  A different bond is born when you find someone feeds and houses the same kind of monster you do.

On one of the last days at the Hope Lodge I met another who fought against the webbed chains of Carcinoid NETs.  She was a strong woman with a powerful story, her husband was equally delightful and it was heartwarming to know these wonderful people had each other.

We discovered we walked through many of the same sticky spider webs of Neuroendocrine cancer.  Online we see it time and time again, but we don’t realize how often our stories repeat through the lives of others until we discover others who have walked our same road.

Links

Personal Advocacy

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

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

New Orleans – Personal Advocacy

New Orleans

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 will give me the opportunity to further explore my disease, have a conversation with someone whose informed and can explain the results of my tests.

Recently I had my Gallium 68 scan.  Getting what you want comes with a price, the price I paid was in the form of a few uncomfortable flashbacks. The preparation room reminded me of my hospital stay.  There were sights, sounds and smells that transported me back to the nightmare of my post-surgery experience.  It was terrifying and I was alone.  Once they stuck me with the needle I remembered that these horrors are easier to face when someone holds your hand.  But, like many cancer moments, you learn to hold your own hand.

This journey and the Ga 68 scan are two moments on a very short list of wins in my cancer journey.  Though getting the Gallium 68 scan was a success it was followed by expected ineptitude. This ineptitude manifested through my general oncologist’s inability to read the results provided to him.  The information he told me over the phone makes me think he barely read the results at all.

Personal Advocacy Tips

Four valuable lessons I’ve learned about personal advocacy.

  1. If you have cancer, skip the generalist and see a specialist.
  2. Demand to see the test results and push to speak with the person who interpreted them.
  3. Get a second then a third opinion.
  4. The best intentions don’t always lead to the best results.

Best Intentions ≠ Best Results

Some time ago I was approached by two people who were angry about my cause. They were reading my computer screen from behind while I was at a coffee shop.  These two-people moved to sit next to me then stared at me until I addressed them.  I learned they were malpractice lawyers who represented doctors.  Their words were venomous and disrespectful toward me.  They told me that the doctors they represent really care about their patients and the intent of these doctors was to help.  They then went on to tell me I was wrong and a bad person for trying to help others achieve personal advocacy.

Clearly, we can see that even when a doctor means well, that doesn’t equate to doing well.  If your mechanic cut your car’s brake line while trying to fix it, would you let bygones be bygones if it caused you to crash your car?  Would you still use the same mechanic if they intended to fix the car but damaged it more?

My intent isn’t to pave the way for lawsuits.  I want you to be more informed.  If you know how to ask the right questions you can avoid many of the holes in life. Perhaps if you know something about car repair you could avoid hiring this terrible mechanic.  If you knew more about your health you could side step a horrible doctor, or an unnecessary treatment.

The doctor is there to serve you, you are their boss, make sure they know it. Treat your body like a business, one that pays with pain. Educate yourself so that you don’t pay your doctor more pain that he or she is worth.

I look forward to starting my trip tomorrow.  I thought that by now I would be done with my cancer journey and I would be writing the end of my novel. Instead it’s another kind of trip, one of new beginnings.  New Orleans is a journey into the world of second opinions.  This doctor’s opinion is not the ultimate truth, but it is better than the one I have been given.

Advocacy Links

My journey to New Orleans marks a major milestone in my Personal Advocacy journey.  If you would like to discover what has brought me to this point feel free to follow one of these links.

NOLA

Second Opinion – Personal Advocacy

Hope the Mouse

Fight Abuse – Boundaries – Personal Advocacy

Deity of Cancer – Personal Advocacy

Abuse – Personal Advocacy