Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

A Different Kind Of Secret


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I had never heard of the book “The Secret” before I moved to Florida a year ago.  And I will say, the book has nothing to do with just Florida, and as I have found out, the book’s popularity extends well beyond the panhandle state.  To summarize the book, and video (identical to the book), the belief is that the universe alone is responsible for everything that happens to us.  Good thoughts will reward us with good thoughts.  Bad thoughts will inflict negativity on our lives.  Whichever we send into the grand universe, positive thoughts or negative thoughts, the universe hears these thoughts, and comes back to your life in the positive or negative, depending what your thinking was.

“The Secret” to me is a nice concept really, but a bit more extreme, and sadly for me, since I cannot give it full confidence, I will fail the book’s message.  But my faith does not really provide me with wiggle room to believe that there are other’s responsible for my well-being, other than the Creator I choose to believe in.  But that does not mean that I do not believe in the intent of the book, to try to live your life in  as positive a direction as possible

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One of the first things I learned as a cancer counselor, was to be careful not to instill “false hope”, or as some would describe it, being too positive.  You do not want to give someone false hope by simply saying, “just be positive, all will work out.”  There will be no reason necessary, for when that concept fails, and it is completely unfair to tell someone, “well, you must have been thinking a negative thought.”  That kind of comment is even more cruel.

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From the very first true test of life versus death, my battle with Hodgkin’s Lymphoma, I defined how I was going to live my life.  Life for me as a child was not easy, but I was happy.  I would describe myself as a fairly positive minded child, whatever I set out to do, if I succeeded, great, and if not, I tried.  But I never went into anything thinking I was going to fail.

But being told you have cancer?  Well, that is a totally different situation.  And for anyone having battled cancer, I think we all will agree, the calendar cannot move quickly enough for us until the day we get to hear the words “remission.”  I was never known for quitting anything, whatever I took on, I finished to the end.  But faced with having to deal with cancer, for close to a year and a half, there had to be a way to make that time go faster.  There had to be a way that I would be able to maintain a positive outlook, while dealing with something so ugly, so lethal, and the treatments just as toxic.

I was told about the book “Positive Imaging” by Norman Vincent Peale.  The book is exactly what the title suggests, positive imaging.  From day one, in my mind, all I saw was what my life would be like, once I was done fighting the cancer.  As each day went by, I got another day closer to that goal.  And even after I concluded my treatments, I used the same strategy in my recovery from cancer.

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Did I struggle along the way?  Absolutely.  Side effects from the treatments were brutal both physically and emotionally.  Were there setbacks?  Sure, but that had nothing to do with having an occasional negative thought in my mind.

Over the years since my cancer battle, there are many in my life who have made the unfortunate comment that I am such a “negative” person, or that I “invite drama” into my life.  That is silly.  Really, who wants to deal with negative issues on a daily basis.  But then again, who better to deal with negative issues on a daily basis, and get through them, than someone who has a positive attitude.

I assure you, over the last 25 years, “I’ve had my share of sand kicked in my face.  But I’ve come through. And we mean to go on and on and on and on.”  Thank you to the late Freddie Mercury of Queen for these most inspirational words.  And each time, as I face yet another issue or crisis (I am really beginning to feel like a cat having “nine lives” with the severity of some of these events), I use the same strategy that got me through my battle with Hodgkin’s.

I imagine what life will be like, once the current situation gets resolved.  I accept that just like needing doctors to get me through my cancer, I need friends to get me through the non-medical issues I face.  And just like the horrible side effects from the treatments, you face them, and deal with them, just like the things that occur in real life with other non-medical issues.  And in the end, just as sweet as hearing the words “remission,” the trials I face will also reach their conclusion, and it will be yet another day of celebration for me.

But the bottom line for me, has been my secret, I know I will get through.  But instead of relying on the universe, I rely on myself.  I have lived through enough practice, and just because I accept that there may be another trial in my life, whether medical or not, does not mean that I am a negative person.  It means that I am strong enough to take whatever the situation, and give it all I have to get through it.

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What Not To Say To A Doctor


It has been said to me by a few, that I really only began to “suffer” the way that  I do, when I discovered there were issues related to treatment therapies from my cancer decades ago.  I was “fine” until the first major health issue related to my cancer survival reared its ugly head needing that heart bypass thing.  But once doctors realized that there were other issues, that is when I caused other things to happen to my body by “willing it” and worrying about things, because I had become aware of them.

Funny, I had always thought that I was doing the right thing, by becoming aware of the unfortunately many circumstances that my original doctors decades ago clearly underestimated or never even thought of, because by being aware of them, I do not have to allow them to sneak up on me like the “widowmaker” I got dealt with my heart.

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I will admit, the number and severity of issues that I have been diagnosed with can be overwhelming, to me, but especially outsiders.  And there are those who refuse to even believe they exist, even some close to me.

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I do my best to protect everyone from the reality with a false shell that I project, the proverbial “book and cover”.  If all you see is the cover, that is all you get.  And for many who are blessed with perfectly healthy and happy lives, then you like my book cover.

But as I originally struggled with the plethora of new diagnosis and worsening symptoms, it did begin to take its toll on me.  I finally was getting answers to why I felt certain ways, even before my heart surgery, that my local doctors were baffled as to causes.

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One of the worse things I was dealing with, especially during the last ten years, was unexplained pain.  And without dealing with the pain, other things develop such as eating disorders and insomnia.  As illustrated above, pain has a major impact on a person’s day to day living experience.  Then you combine it with someone who is so stubborn and bullheaded, that they force themselves to grind their body well beyond what it is capable, perhaps even as a healthy individual, and emergencies are going to pop up.

As my pain level was hopefully reaching its plateau, or at least I was hoping it was, I sat across from my physiatrist, who was responsible for my lung issues and pain concerns, and I made a statement to Dr. S that even shocked his nurse assistant, and his response shocked me.

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“I don’t know anymore doc.  Maybe I deserve the pain that I am in.  It is the price I have to pay for having survived my cancer.”

Dr. S unleashed an angry barrage of frustration at me for even thinking my comments.  I have honestly never been yelled at by a doctor.  I have gotten attitude because of my stubbornness, but never have I been yelled at.

But his message came across loud and clear.  He cared about me.  He knows the lack of follow-up care I had received for all those years, but assured me was no longer going to be the case.  And for those of you reading this, and newly in remission, be thankful that you are now getting the follow-up care that you are.

He stressed to me, that we were finally going to get the pain under control.  My health issues will never be about cure, but rather management.  And if you can manage the issues, you can manage most of the other areas of your life.  But if you do not have a grip on the pain right from the beginning, other areas of your being are going to suffer.  The main issue for me as always been how hard I am on myself.  I have been told this by other survivors as well as my doctors.  I am tough on myself emotionally and physically.  I have never wanted my life to be defined by cancer, but I have since turned it around that my life will not be denied by cancer.   I have never wanted pity from anyone, but there is a huge difference between pity and empathy.  Most importantly, I have learned that if I am to survive, I have to accept that my body has not been what I thought for the first half of my life, but my body is still working.  I have limits, and it is when I forget that I have limits, or push my limits so as not to disappoint someone, that is when my body quickly reminds me, and sometimes quite harshly.

Over the decades, I have known so many survivors who have gotten through their lives, managing their issues, and still able to enjoy their lives.  And they all have reasons to feel like I expressed earlier, and they do.

The important thing is that if you feel this way, it is normal.  More importantly, you are not alone.

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Bedside Manners More Bedpan?


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It really should not be all that much to ask, right?  You are dealing with a serious illness or injury.  All you want and expect is some empathy, some understanding, some patience for the patient.  But instead, you get snarkiness, robotic intonations of phrases, clockwatching, and no Q&A.  And if you are lucky, you might even catch the doctor give you a glance just to see if you are still paying attention to what you are being told.

Being a patient and caregiver, I have been on both sides of this issue.  So I feel that I can be fairly objective about this.  But please do not confuse my objectivity with acceptance or letting anyone off the hook.  As a patient, we have our own responsibility to ourselves also, to make sure that our needs are being met.  And when we are facing a difficult medical crisis, those needs also include emotional.  Without our emotional needs being met, we lose trust in the one person who is responsible for possibly saving our life.  And this attitude can have a definite impact on our survival.

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When faced with my own cancer, Hodgkin’s Lymphoma, I turned to the very first person that I ever knew to survive cancer, my grandmother.  She had been diagnosed with breast cancer in her early 70’s.  She had a mastectomy, and took some preventative chemo, and survived more than a decade.  She had been treated at a small-town hospital.  But she had survived.  It was a no-brainer, that I would choose her oncologist to treat me.  Dr. M had saved my grandmother.  I felt my chances would be great in my favor.

Dr. M was an older doctor, probably very close to retirement.  From what I figured, he was very set in his ways.  And it was his way, and only his way.  We clashed several times, but Dr. M soon learned that I was in charge of my care, and decisions were going to be made by me.  I still had trust and faith in how I was going to get through this, but it was going to be on my terms.

Well, I guessed wrong.  As soon as my lymphoma was gone (a result of my decisions), new disease was discovered.  This time Dr. M was not going to mess around.  I could no longer avoid chemo, a stereotypical terror I feared, and with good reason.  But it was his lack of bedside manner, while I was facing my biggest fears, and his reluctance to answer  two full pages of questions that I had in regards to chemotherapy treatment.  He took one look at my hands, saw the lists of questions and then said, “I don’t have time to answer that.”  And he walked away from me.

I was firm.  I had questions that needed to be answered before the first drip of poison was going into my veins.  And so I fired my oncologist, the same doctor that cured my grandmother.

I went next to my therapist and told them what I had done.  I was kind of surprised at his reaction in that I received part empathy, and part lecture.  It was the lecture that I got first.  I was made to understand, that oncologists deal with death.  Many of their patients do not survive.  Oncologists know this possibility exists with each patient that they take on, and for my requirement of an emotional attachment from my doctors, I was told, it probably was not going to happen.

However, then, I was told by my therapist that he would help me find another oncologist.  Surprisingly, it came from the same oncology group.  Dr. V was a younger man, an Army vet, but had a bit more of a personality, which I felt was important.  At least if my questions did not get answered, at least I might feel that he cared about whether I made it or not.  But who can argue with my decision?  I am here 25 years later because Dr. V earned my trust, which resulted in me fighting with a more positive and certain attitude.

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There is no doubt the impact of bedside manners of a doctor, can have on a patient.  That is not to say that a doctor does not have a right to be a jerk, or scold, or lecture.  Every doctor I have ever had since Dr. M, has scolded me, lectured me, one even yelled at me.  But I also know, they cared for me.  If I did something foolish, like eat a particular food, or as many Hodgkin’s patients know, drink any alcohol, as a patient, we paid the price.  And an oncologist would have every reason to want to lecture us.  They are trying to save us, and we give off the appearance that we do not have the respect for what they are trying to do for us, save our lives.  I once told one of my doctors that I “deserved” the amount of daily pain I deal with as my price for surviving cancer.  And when I say I got yelled at, even at my then age of 45, I GOT YELLED AT!  But I knew where he was coming from.  And I also made sure I never gave him a reason to do that again.

Does that mean that we should stop living?  Having fun?  Doing dangerous things?  Absolutely not.  But we need to keep things in perspective with our doctors.  Yes, they are busy.  They may have a lot on their minds, perhaps a patient who did not survive, maybe even something personal.

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But if you have a doctor that you feel really has no bedside manner, or at not enough to meet your needs, you have a responsibility to yourself, to not accept that.  There are options available to you to deal with this from nurses, to therapists who will intercede on your behalf, or even your case worker.  But remember, if the “manner” is being brought on by your own behavior, then the responses are to be expected.

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