Learning from My Mistakes

I have decided as my blog grows to review and revise and correct any earlier blog posts that I may have written early in my cancer fight. In that light, I have updated and republished this early blog post. It was originally written July 3 of 2013. I have fixed a few things and made a few corrections. I hope it helps you in your fight. You can read the updated version here. ~ Ed

I’ve had a bad experience and so, in an effort to help others I have decided to post what happened and what I’ve learned from that experience. The “incident” happened right after I was diagnosed with cancer. Hold on because the ride gets a little bumpy but maybe you can learn from my mistakes. I’m learning from my mistakes and maybe you will too.

You should know that throughout this entire process I am nothing but, polite and respectful to all of the medical professionals involved in my care. Never did I have a tone in my voice. I never had an eye roll. I am only looking to get the best care possible and to educate myself regarding my condition.

The reason I feel the need to mention this is because I feel that I should dismiss the “He had it coming.” reasoning before I start my tale. It gets a bit negative but, in the effort to be helpful to others I’m trying to put it all out there…good ~ bad and otherwise. I will try not speculate on the motives of the individuals involved. As a side note, there was a nurse there who actually was very professional and did her best to make me comfortable.

So, here’s what happened to me ~ This is the short version.

I felt sick. I didn’t feel terrible but not healthy either. I started having trouble with my stomach…and “the lower bits” to be polite. So, I got scanned and had a colonoscopy, the surgeon removed some polyps and the biopsy was returned with a cancer diagnosis. Of course there’s more to it than that but, that’s the gist of it to save time.

Carcinoids, what’s that?!

So, I have cancer. Here’s how little I knew. I didn’t realize that there were different kinds. I just thought you had cancer in different locations. Now I know better.

I was told that I had a type of cancer that is called a carcinoid and I was told that I was lucky because they grow slow. (Lucky Me. I would have preferred a lottery win.) I was told that in the same way that there were humans and humanoids that there were cancers and carcinoids. Yes, a doctor told me that. I’m still not sure what a humanoid is….should we all think of a politician now? <just kidding>Β  πŸ™‚

I should have been directed to a cancer specialist but I was not. I should have known to do this myself but, I did not. I know now. I did not know anything.

Lesson Learned: I realize now that there is a lot of ignorance regarding carcinoids and neuroendocrine tumors and a lot of insensitivity as well. I should have known that just because a doctor neglects to admit ignorance on the subject of carcinoids and neuroendocrine tumors that does not mean that they are qualified to advise you. I should have gotten to a carcinoid, neuroendocrine specialist right away.

My Next Step ~ A Consultation

I was referred to another doctor for a “consultation”. I was told that this doctor was a specialist and that he had previously dealt with and removed carcinoids. I was told that I was in good hands and that I could trust him. I will not name him but, he was the head of surgery in a prestigious hospital. I did not know this walking in. He was supposed to be the best.

Lesson Learned: I should have asked “The best at what?”. As it turns out, it was NOT carcinoids or neuroendocrine tumors.

The night before I was to “meet” with the doctor for a consultation I received a call from his nurse telling me that the doctor wanted to conduct a small examination while I was there and she wanted to know if I was willing to undergo the “procedure“. That is the word I should have “red flagged” on. The nurse told me that he could operate on my liver as well as the tumors in my gut so, I agreed. I think they deliberately misrepresented the situation so that I would agree. You see, at the time I did not know that the tumors had spread to my bones and other areas of my body but I did know about the liver. The more questions I asked the less patient the nurse became. I felt pressured and stupidly went to the appointment….but, what could I do? I was full of fear….I had cancer. I’ve learned a lot since then.

Lesson Learned: I should have gone to a doctor who specialized in carcinoids/neuroendocrine tumors. I should not have allowed myself to be “sold” on an procedure. I should have listened to the “little voice” that said wait.

So Shiny, Modern and Clean

Huh? Valet Parking! Wow, look at this modern building. Not a piece of paper in the parking lot. Wow, this place looks good. I was wrong. As it turns out, none of that matters if the doctors and the staff treat you poorly. I’ll try to make this short and sweet and factual. Here we go….

Will Patient THX 1138 (click for a surprise) Please Step ForwardΒ  The valet takes my car keys and points me to the cancer center and I sign in. So far so good. After sitting for a bit, but not too long, a woman steps forward and calls for somebody who’s name begins with an “E”. I’m sitting for a while and nobody steps forward. I look at my wife and she looks at me and so, I’m assuming that they meant to say “Edward” (maybe). So, I get up and ask. Yes, it’s me and I get lecture #1 from the person who will take my information for the hospitals registration procedure and insurance details. She couldn’t read my name. “OK, I think (surprised), but you could have called my name a second time instead of just turning your back and walking back to your desk.” (I never said this out loud.) I wonder how long they would have let me sit? She gives me lecture #2 as I’m sitting at her desk because my insurance is not a typical plan, according to her, and she let’s me know without looking up and sighing in annoyance. I guess my insurance plan is more difficult but, I don’t really know. Yes, the hospital messed it up and billed me for thousands of dollars later. We’re still fixing this. They complete the check in process and point me toward the doctor’s waiting area.

Meet the Doctor and Staff Attempt 1 – I fill in more paperwork which is no big deal but it is a bit lengthy. We get it done and wait to be called. We are called fairly quickly. Sadly, I see so many people who seem so much sicker than me. It breaks my heart and I want to help them but, they’re strangers and so I stay silent. Anyhow, my name is called and I’m ushered in to a room. Yes, they could read my name. πŸ™‚ I’m told to disrobe and that the doctor will be in soon.

Again, my wife and I are looking at each other. Why am I disrobing? I’m supposed to be getting a consultation from a specialist who has dealt with carcinoid/neuroendocrine tumors before.

Meet the Doctor and Staff Attempt 2 – The nurse returns and tells me to disrobe again and, before she darts back into the hall, I ask about the consultation. She doesn’t know anything about any consultation and I should disrobe because the schedule is packed. I don’t. Now, I’m starting to worry. There is no changing room, no curtain, no privacy…and the room is like grand central station. No one has asked how I feel. I’m not sure what is going on or what the procedure is for.

Meet the Doctor and Staff Attempt 3 – Now, I’m sitting on the table completely clothed and every person who walks in tells me to disrobe. In between their coming and going my wife and I are whispering to each other convincing ourselves that we are not crazy. Why am I not getting a consultation. Finally, the doctor steps in and tells me to disrobe and begins to write something. There are at least 5 or 6 other people in the room just staring at me and are now waiting for me to disrobe in front of them so they can get on with their day. There is no concern for my privacy or dignity.

Lesson Learned: When you are being treated like a lab specimen it might be time to step out gracefully, cancel the appointment and seek medical professionals that have more compassion.

Consultation, What Consultation – I ask the doctor what exactly is going on. What about my consultation? I need to know what this carcinoid stuff is, what kind of cancer do I have…anything?! Β He tells me what I already know (it’s a carcinoid, slow growing, I’m lucky etc.) and informs me that he doesn’t have time for this and to disrobe and we will talk after the procedure. He then tells me that “He doesn’t have my records from the other doctors and couldn’t tell me much anyway” and now I’m blown away. I ask how he is going to perform an examination without my medical records? He insists that he doesn’t need them for what he is doing because it is a simple examination. I try to get in touch with my doctors and have them fax the records but, I cannot reach anyone.

I ask if there is pain involved in the procedure, he says no (AN ABSOLUTE AND DELIBERATE LIE) and so, I agree. THEY INVITE MY WIFE TO STAY AND WATCH! I’m not making it up. Of course she doesn’t want to stay and waits in the lounge area. I am read of list of medications and asked if I took any. I say yes to aspirin for some mild headaches and I receive lecture #3. Don’t I know that I should not take aspirin for more than a week before a procedure?! Actually, I did not know that and I say “You didn’t tell me.” In fact they didn’t tell me anything, sent no email and scheduled me at the last moment. They never told me how to prep for the procedure at all. You will probably not be surprised that they moved forward with the procedure anyway.

Not So Shiny Any More – In the middle of the “procedure”, which is in no way simple as it takes more than an hour and a half to complete, the equipment breaks and he yells at his staff for not checking it beforehand. Yes, I am fully awake and I have no anesthesia and no pain killers. Everyone is scrambling and banging the equipment and I’m thinking I might have gotten better care in a third world country. The wow factor has shifted from me being impressed with the shiny facade to how badly I need to get away from these people. Oh, and there were 2 procedures not one. The entire process was a nightmare.

My Consultation – The Procedure(s) end and I’m told to get dressed and, afterward, I am directed to the “Doctor’s” office. He has a huge desk and after all of this I am hoping that I can finally extract some information out of this man.

Nothing but Name, Rank and Serial Number – Everyone piles into his office including a student who was there during the procedure(s). He says that I have “a disease of the liver” and I ask what it is. He says that I don’t need to know. I look at my wife and then return the doctor’s gaze and say “I think I do since it’s my body.” He then says that he cannot remember. I’m starting to wonder if he is incompetent or deliberately withholding information. My wife is convinced he was withholding information and I suppose she is probably correct since he is an accomplished physician. Finally, after some back and forth he tells me. You have carcinoids. Yes, and there is only a single medicine for it. I ask what it is and then the same dance ensues. I look up and the nurse that sold me on coming here is grinning. I still cannot fathom what was going through her head.

This is Going to Make You Angry – Everyone that I have told this story to has been in shock until I get to this point in the story. This is where everyone gets angry. I did not. I continued to try and get information and find out about my best course of treatment.

He says, “Edward, “How serious are you about this?” I ask, “Is my life in danger?” and he replies “Yes”. I reply, “Then I am deadly serious.” and he says then I need to have surgery right away to remove the tumors in my gut. He insists that this needs to happen NOW. We agree and schedule an appointment. My wife, Lisa, agrees because they have successfully terrified her. I have agreed because I know that I will get no further information unless they foresee a possible surgery.

I ask for my medical records fully intending not to return and he says that they have nothing. I say what about the results of the procedure. He says that his notes are only for his reference but, he has some records that I can have. They tell us to wait and leave us waiting for over 20 minutes in his office in the dark. Finally, I get up and ask if the doctor will be back and the nurse laughs and sarcastically remarks “Are you still here?!” Yup, one last punch in the face. We get the records and leave.

I Finally Get it Right – I get my “records” and head to the lobby to get my car. There’s no valet and the security officer will not let me take my own keys. I show her my driver’s license and registration….no good. I have to wait. We wait…and wait. He finally shows up, retrieves our car and we drive away.

The drive is silent for a while as we try to deal with my prognosis. I have 5 years…10 if I’m lucky…at least that’s what the doctors are saying. My wife is shocked to learn that I won’t let this “butcher” touch me again. She protests because she is afraid and we talk and cry.

If the doctors are right then our family will be eventually ripped apart by this disease. Our son will have no Dad. My wife and I will be separated from each other when nothing on heaven or earth has been able to do that to us. Until death do you part takes on a new meaning now. We still struggle with these possible realities but we hold out hope and faith that this will not happen to us.

Don’t Believe Your Lyin’ Eyes – We begin to talk about the “hard sell” we were just given and I explain that the doctor has just told me that I have a slow growing cancer but, I need immediate surgery to remove it. It doesn’t add up. When I talk about the tumors in my liver he changes the subject and tells me that’s a different problem and that I should focus on where the cancer originated.Β  I later find out that everything that I thought and suspected is true. There is no rush for surgery. If it was only in my liver then it could have been operated on at the same time not separately. He was pushing me for surgery WITHOUT having my medical records or any of the scans from the other doctors and on following up with other doctors I find out that it has spread to my bones, lymph nodes, liver, gut and probably other places. They have ruled out surgery as a cure. They suggest surgery only to relieve symptoms.

THE BIG LESSON I’VE LEARNED –Β Β You must stir up all of the courage that you have, all of the strength that you have and prepare for a long hard fight.Β  You must become your own health advocate and have the courage to say “no” when something is not the correct medical choice for you even in the face of pressure from those you respect. You must also have the courage to say “yes” to something that others do not approve of but, in your opinion, may be best for you. You must become a completely new person. You must become a warrior. Hate the cancer. Stir your passions and fight. Fight for your family and those that love you.

Trust God. If you believe in God, and I do, then you must have faith that he loves you. It is said that we are God’s children. If you believe that then think of yourself as being under his care in the same way that a parent loves and cares for a child. Then think about how much more love God must possess than even the most loving parent. I am not sure that I will make it through this but, I am sure that God loves me and mine.Β  I have faith that this is true although the things I see may not always confirm that.

Make a battle plan. Part of the reason that this all went so bad for me is because I had not yet developed a plan. It can be a simple plan at first but, I’ve learned that I need to make a plan just like any other large and important project. Part of my plan includes seeking the best medical experts and not an “also doctor”. In other words, I do this and also carcinoids. Seek someone that will be a good match for you and is, in your opinion, a good fit.

It is my hope that by sharing this negative experience, and the lessons that I’ve learned from it, that it has helped you in some way. Then I will know that it was worth putting out there.

Ed
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15 Comments

  1. “As a side note, there was a nurse there who actually was very professional and did her best to make me comfortable.”

    Hello Ed, you may want to send a note to the nurse you mentioned above. I am sure you don’t know her name, but if you mention the date, time, location, doctor etc. the hospital may find a way to identify her and pass the note on to her. With a little luck, your note will keep her focused on the fact that how she acts really does matter. I suspect in her field the stress wears you down. A thank you goes a long way!
    With that said, thank you for your friendship….

    • Very good point!
      Actually, I did make a point of thanking her as we were leaving.
      I just didn’t include that in my account…maybe I should have?

      I know my account of what happened seems very negative when you read it.
      Typically, I would have kept the entire incident to myself and soldiered on but I decided to post the account because I decided that my negative experience might help others. I’m trying to turn lemons into lemonade. (That was cheezy!) ha ha ha!!!!

      Happy Independence Day! πŸ™‚

  2. Eddie I had no idea how badly you were treated. I’m really glad you decided to share the whole ugly story, and am amazed you haven’t already consulted an attorney. If this bozo is affiliated with a hospital, they should know what he is and how he treats patients.

    • Hi and thanks. The truth is that I only put the story up because it might help somebody else make better choices than me. I know it’s emotional and when you read about something so negative you want to see some sort of “justice”. Honestly, I agree but I also know that all of that work would be fruitless. I’m just telling my story for others. Maybe it will help somebody? It takes a very negative thing and turns it positive. At least that’s my hope! πŸ™‚

      • Very altruistic and I know you have to pick your battles. Posting his name could open you up to legal action,so he’s lucky there.

        • Well, I did learn a lot the “hard way”. I should make a note to write a post on picking doctors. It’s pretty difficult.

  3. I DO think that posting this experience will help people down the road. Everyone has a starting point in their journey. Hopefully, you posting this will catch someone at the beginning of theirs, and in time, before they are “scared into action”.

    As I told you once before when we were discussing this episode, I would have been one of those people that were scared into surgery. I am impressed with your strength in walking away in one of the most frightening experiences a person can face. Cancer. A truly valuable lesson, and one expressed VERY well in this post, is to listen to your gut, your inner voice, your guardian angel, or what ever you personally call it!! If it feels wrong, it is.

    You know by the first post to your blog, people will read this. You did good Bro!

    • Thanks for the encouragement.
      I know I’m not the only person who has been pressured into making a hasty decision but, I think I’m one of the few to walk away and say no the first time.
      They knew they were doing the wrong thing because when they called to schedule the surgery they kept talking about me requesting a “second opinion”.
      I never did that. They knew that they were pushing me into surgery before I got a second opinion and it must have been on their mind when they called back.
      BUT HEY….I’m keeping it positive…..as best as I can. πŸ™‚

  4. Eddie,
    Loved,hated your post. Hated what you went through. Loved your attitude. I think sometimes in many situations we behave like sheep being herded. You are one sheep who will be going his own way. Yeah for you. Do yourself a favor and find the book Love Medicine and Miracles by Bernie Siegel (he also has a website). He writes about cancer and how attitude can play such an important part in that journey. I have read just about every book he has written, very inspirational. Take care, you are always in our thoughts and prayers! Barb

    • Thanks for the encouragement.
      Yes, I’m definitely cutting my own path.
      Maybe not a sheep though….maybe a bull in a china shop. πŸ™‚

      • No one would ever call you a sheep! Sometimes I think your specialty is swimming upstream against the current…not easy but more productive. FEARLESS

  5. Ed,
    Consider buying Bill Henderson’s “Cancer-Free” book. It is an eye opener. Also Ty Bollinger has written a wonderful book called “Cancer: step outside the box”.
    Good luck with your journey,
    Anthony

    • Thanks. I’m reading “A World Without Cancer” by G. Edward Griffin currently.
      It is a book about B17 also known as Amigdalin and Laetril.
      I’m polishing off chapter one right now.
      As I read each chapter I am going to review each chapter and then review the book as a whole.

      I also have “Laetril Case Histories” on my shelf.
      This carcinoid thing seems a bit different from other cancers so, I hope I can find something that helps in addition to traditional treatments.

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