medical history records

Caught in a NET? Help your doctor help you!

We could have the best doctor, the perfect notes and the most amazing pitch in the world, but if our team doesn’t have our medical records, they won’t have the tools to help us. Doctors have a wealth of knowledge, but without our records they can’t help us how we need to be helped.

What does my doctor need from me?

A clearly presented history– Our doctor must be able to easily read our medical history. Your medical records may be collected from the hospitals and offices you’ve visited. This step may take some time, because you will include all the most important data in this booklet. Once completed send it to your doctor via email and bring a hard copy of it to your next appointment.

  • When writing this booklet detail your medical history in chronological order
  • What are some of the signs and symptoms of your disease? How long are they present (duration)? What degree of discomfort do they cause? How frequent do they manifest?
  • What factors cause these signs and symptoms to trigger, amplify, reduce. Have you discovered anything that suppresses these experiences and if so what are they?

A detailed pathology report– When sending your medical history to your doctor they will also need your pathology reports. Be sure to send all of the following:

  •                What was the location of the primary metastasis?
  •                How differentiated are the tumor/s?
  •                What is the grade of the tumor/s?
  •                Be sure to send the % of Ki-67 & Mitotic rate.

Make the most of these moments– While organizing this information take some time to read it. If you see something you don’t understand write it down and look it up. The best way we can learn about our disease is to discover how it personally affects us.


Discovering Hope

Caught in a Net 2

Caught In a Net 4

NCAN

Empathy an Intro

I think its easy to attack without considering the consequences of our actions. It is easy to say something is bad simply because it fails to meet our paradigm of thought. Critical thought is hard, to stay on course with its edicts we must follow its teachings and consider others. It teaches us to explore our thoughts and feelings. To develop an understanding of our ideology and find ways to bridge our world with others. It teaches us to consider the thoughts and feelings of others. To imagine what it is like to be them, so we can treat them fairly based on their circumstance.

What good does any of this do if we don’t know how to apply these teachings to our daily lives? An expert isn’t born, to be proficient in a skill we must practice. Practice is more than memorization, it is exploration and experimentation as well. We can sit behind old books all day learning what the dead say about body language and tonality, but this equates to nothing if we are unwilling to explore our skills.

What is empathy? “the ability to share someone else’s feelings or experiences by imagining what it would be like to be in that person’s situation.” [1]

How do we use the skill of empathy? How can I imagine what it would be like if the situation could never conceivably happen to me? Empathy requires imagination, you must have the ability to see something that doesn’t exist. If imagining something like this is outside of your capacity I suggest exploring a few new hobbies. Consider going to your local hobby store to join a role-playing group, get involved in a game where you can play a character and experience an imaginary world. Perhaps find a local writing group and explore fictional writing or experiment with art. If your mind is no longer in touch with your heart it will be very difficult imagining what it would be like to be in another person’s situation.

Mind Tools presents a good primer to practice empathy.

Empathy at Work [2]

  1. Put aside your viewpoint, and try to see things from the other person’s point of view.
  2. Validate the other person’s perspective.
  3. Examine your attitude.
  4. Listen
  5. Ask what the other person would do.  

I would suggest giving their interpretation of empathy a good read, you can find this article at: https://www.mindtools.com/pages/article/EmpathyatWork.htm.

 

To empathize with someone, we need to imagine we are them. What would it be like to be them in this situation. If you were them, how would you feel? If you were them, how would you want to be treated?


[1] “Empathy” Dictionary. Cambrdge Dictionary. Web. 12 December 2017. < https://dictionary.cambridge.org/us/dictionary/english/empathy>

[2] “Empathy at Work” Mind Tools. Web. 12 December 2017. < https://www.mindtools.com/pages/article/EmpathyatWork.htm.

Confirmed

Confirmed

I mentioned the only reason I could embrace the moment was because the hospital confirmed they received all my medical records.  So, what does a confirmation mean if the doctor never looks at what you sent them?  The answer is nothing.

Unfortunately, personal advocacy means you must continuously put yourself center stage.  Effectively you must be the most annoying person in the world if you want to avoid being left behind.

It’s pretty scary.

A more detailed Conversation

So, what medical information did I gain from this?  Not much.

While in New Orleans I spent a great deal of time laying inside of fancy, expensive devices.  I drank interesting fluids after being injected with all sorts of mysterious serums.  It was great to get these tests done, if I were smarter, stronger, perhaps if I had more wisdom I would’ve asked why couldn’t I do these tests back in Saint Louis.

While in New Orleans I was only able to read the results of one scan.  The report indicated that there was something described as a mass effect in my liver.  Specifically, it read: “Right lung has been resected and the right thoracic space is largely filled by liver and a trace amount of fluid at the right lung apex. The liver produces some moderate mass effect on the right side of the heart.”

When I read it on the report I felt anxious, perhaps it meant nothing, perhaps it meant something.  Any news feels like bad news, that’s the nature of Hope the Mouse.  I looked up what mass effect was, mostly it brought up video game stuff and references to cranial tumors.  That wasn’t a fun thing to read, but instead of worrying about it, I kissed my girlfriend and returned to the fun adventure of exploring New Orleans.

Talking with the Specialist

When I met with the doctor I asked him if he had reviewed my scans and tests.  He said no.  I asked him if he would like to see my medical records and the scans that I brought and he said yes.  This was the first time that he read over my medical history.

Once he opened the file I asked him if my liver had moved up into my thoracic cavity and he quickly said no.  Then I asked him what a mass effect was, he didn’t respond so I pressed the question again, this time handing him the report from the scan I got in New Orleans.

He took the paper and then continued to stare at the Ga 68 scan on the computer screen.  Many moments were spent as he complained about the quality of the scan, saying the file was organized in a way he wasn’t used to.

I asked him again what the mass effect of my liver might be.  In response, he said he thought that it was most likely my heart pressing up against my liver. He went onto say that there was a chance I might have to have surgery in the future if it became a problem.

The most important piece of information he gave me was to have my port removed.

Conclusion

What was the medical value of this journey?  I need to have my port removed.  There is a mass effect in my liver.  I have a surgical screw in my hip.  I learned that if you want to become your own personal advocate, everything has to be confirmed.

Links

Personal Advocacy Resources

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

moments

Moments – Reflections

Moments

moments

I committed myself to CenterPoint Hospital and it was the best decision I’ve ever made.  It wasn’t the best of moments, but it glowed with my purpose, the purpose of personal advocacy.  Personal Advocacy transcends the body and the mind, it encompasses both perfection and harmony.  If we want to fight for our health we must fight for our mind.

My journey will be time stamped by my birthday on Monday, May the eighth.  This has been the hardest year of my life.  It dwarfs every experience, every hardship, every moment that came before it.  I’ve never experienced the plethora of experiences as I have this year.  From a poorly constructed village, to the burnt-out husk, I rose from the ashes as a phoenix.

This year I’ve learned so much in exchange for so much.

There is no way anyone could predict the person I would become by this coming birthday.

My journey began coughing up blood at urgent care.  My friend told me to go to the hospital, it is from this moment that my cancer journey started.  From there I would see a pulmonologist, then a thoracic surgeon, have my lung removed and move onto chemotherapy.  I would be abused by a caretaker, lose a close friend, begin a personal advocacy quest, couple with a wonderful woman, share in terrible heart break and attempt suicide.  At the end of all this I’d rise as a phoenix from the ashes becoming a new man with an old spirit.

I regret nothing, I blame no one and I cherish every moment.  There were moments of terror and others of incredible love, all of them are important to me.  I am the man I am today because of these events, though I endured pain beyond my wildest imagination I wouldn’t trade any of it for anything.

Links

Damaged – Reflections

Discovering

Discovering Personal Advocacy

Discovering

Discovering Personal Advocacy 

Before discovering personal advocacy, our life drifts within a void.  Slowly and without purpose we amble toward the ever-consuming maw of oblivion.  In these moments, we teeter at the edge of destruction.  Sitting on a wall like old humpty dumpty waiting to fall.  If we remain here we will break and we will leave our treatment to hands of all the king’s men.

Discovering personal advocacy doesn’t change the disease, it doesn’t change the nightmare of your circumstance.  Instead it transforms your treatment and the amount you are willing to endure.  Old humpty dumpty will still fall, he will crack and break and in the eyes of some will be rendered useless.  However, through personal advocacy we get to discover that old humpty dumpty is not an egg.  He isn’t a he, rather an it.  It was a cannon.  Instead of just letting any old joe try and fix it, shouldn’t we find a specialist for the job?

Discovering

Once on the road for personal advocacy we find its one of twists and turns and dead ends.  It’s a path of heart break, loneliness and frustration.  As we move forward, taking a step then another, we begin to fill that void.  We become powerful and we stuff that hungry maw with our fist like Tyr did with Fenrir.  I want you to do it better than Tyr, let’s keep the hand while defeating the beast.  As we take a stand we step back away from the cliff, no longer will we teeter at the edge of destruction.  Instead we look out over the horizon and bask in the glory of the world.

Many Steps

This achievement of personal advocacy isn’t born from a singular moment of pain.  It is a tool that has been hammered into existence through a lifetime of abuse and neglect.  It is an artifact of Hephaestus, the crippled creator.  Like he, we will use the tools forged in the fire of our own hell to grant us the greatest life we can live.

Discovery

If you gaze into the past you will see you’ve already taken steps towards personal advocacy.  There have been numerous moments leading to this point.

In my journey, there have been many steps and moments that helped unlock the door to my personal advocacy.  These ranged from suicide attempts to the enduring the horrors of Ino my caretaker.

Look back at your steps, see the moments and use them to take control of your life.  Be powerful, take charge and become your own personal advocate.

Links

Discovering Hope

 

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

Second Opinion – Personal Advocacy

second opinion

Second Opinion

You should always get a second opinion.  They say that opinions are like wiggly toes, some people seem to wiggle their toes more often than others.  Doctors just have really big wiggly toes, so when they move them about, we seem to notice and remember them more.  They also went to school to learn how to wiggle their toes, they are experts in the act of toe wiggling, some even see them as toe wiggling gods.

Toe wiggling and opinions are similar in that most everyone has the ability to wiggle their toes, if not toes then perhaps their nose.  What I know is that they call it a second opinion because everything your doctor just told you was his or her opinion.  Doctors are people, they’re human and during the course of their practice they make mistakes.  It’s important when we make mistakes that we learn from them, since doctors are still practicing they are constantly making mistakes, learning and becoming better healers.  By getting a second opinion you can reduce the chance that you become one of your doctor’s mistakes.  His mistakes may make him a better healer, but surely it will impair your quality of life.

Your Opinion

More than a second opinion, what is your opinion?  You have one, just like all the wiggly toes.  Sure your opinion might not be rooted in your doctor’s reality, but that’s fine, the only reality you can know is your own.  After all is said and done it is you and not the doctor who has to deal with the effects of his treatment plan.

In the quest for personal advocacy your opinion is the most important.  It is more valuable than a first or second opinion, it is more important than your spouse’s, your children’s or anyone else’s thoughts about what you should do.  You and you alone must make all of the sacrifices, everyone else can bow out at anytime.

The importance of acknowledging your opinion is that it does two things.  One, it reminds you that your opinion, thoughts and feelings matter.  Two, it ensures that you have made your decision with informed consent.  The last thing you want in this process is buyer’s remorse, especially when it comes to your life.

Links

If you would like to continue the journey of discovering personal advocacy feel free to click on any of these links.

Fight Abuse

Introduction to Boundaries

Cancer

Power Advocacy 3