Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

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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My Dad – The School Bus Driver


last photo of my dad and I before his cancer

There are moments in life, that just trigger memories.  Yesterday, I had one of those.  I grew up estranged from my father most of my life, so for me to have any kind of concept of my dad to be a “coochie coo” kind of parent, was really hard to imagine.  And in times when I did see him, I definitely would not have described him that way.

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Which is why, when we adopted our daughters, one of the first things I told my father, who constantly felt guilt for the lack of being involved in my life, “we can’t change what happened, but you have two beautiful granddaughters and they love you.  If you feel you have something to make up, here is your chance.”  And my dad adored his granddaughters.  They especially knew that going to “pappy’s” house, meant raiding the huge Oreo Cookie cookie jar.

But from what I knew of my father, he was fairly gruff.  Driving truck most of his life, he was a “motor head” and quite talented with handy repairs.  Definitely not “coochie coo.”

But then a few years ago, he dropped a bomb on me.  Having recently retired due to both age and health issues, he decided that he needed something to fill his time in.  He told me, “I am going to drive school buses.”

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I was like, “you know dad, they have kids on them?”  He laughed.  I began to warn him of how rough teenagers could be when he cut me off that he would be driving elementary school kids.  And again, I was like, “really?” as if I was concerned how the kids would react to someone the way I used to think about my dad, and  stress the way I “used” to think of my dad.  The fact is, my daughters did change the way he was around children.

My father told me lots of stories of children he had seen somewhere, telling me of behaviors both good and bad, and then turning the conversations to how I was raising our daughters, complimentary.  But one of the most touching stories was that of Chinese twins on his bus, that he said reminded him so much of his granddaughters, not just in a physical resemblance but also in manners.

When my father was diagnosed with lung cancer, eventually he had to retire for good.  And he was so touched by all of the families on his route who gave all kinds of tokens of support.  But is was the hugs from all the children as they said goodbye to their favorite bus driver, that meant the most to him.

It is often said, that depending on the situation of someone’s passing, it is better to remember them a certain way.  And this is definitely one of those memories  I will always cherish of my father.

Yesterday, I saw a school bus with a driver that resembled my father.  Being behind the bus, I saw the red flashing lights as the students poured off the bus, turning to wave goodbye to their driver.

I miss you dad.

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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