Paul's Heart

Life As A Dad, And A Survivor

A Body’s Betrayal

I am only on my third family physician in forty-seven years.  My first doctor died while still practicing medicine in his mid 80’s.  My second doctor retired.  I do not recall my health issues in great detail with them as my doctors.  But my current physician (and technically, her spouse who practices with her counts as my third doctor as well) knows me for being the kind of patient who only seeks out care when things are no longer tolerable.  Or at least I used to be.

Perhaps the most serious ailment that she had to deal with me, was a strange blistering of my skin.  I had been trimming hedges and pulling weeds, and evidently had come in contact with poison sumac which was far worse than poison ivy.  As I entered the office, I heard the receptionist comment, “tell Dr. J that Paul Edelman is actually here.  This has to be serious.”  Prior to that, on average I was only seen for annual and seasonal allergy shots.

For most of my life, my body has been very reliable.  The only time that my body had disappointed me was when I was diagnosed with Hodgkin’s Disease.  My body had betrayed me as I was told that I had cancer.  The next eighteen years my body had returned to normal, and so did my appointments with my primary physician.

But over time, I had come to know many other cancer survivors who have to see doctors more frequently.  The majority of them seeing primary care level doctors who many times end up stumped as symptoms and testing do not necessarily make sense for the average healthy individual.  What happens next, is the patient has a pretty good chance of being diagnosed as hypochondriac.  No matter what gain cancer survivors have made in care, seeing is disbelieving because it just does not make sense.  But if the patient is fortunate enough to live near a long term survivor clinic, a cancer survivor has a better chance of finding an advocate, one that will not treat the survivor as a hypochondriac.

That is right, I said a hypochondriac.  Many of us have grown up hearing that word before, referring to someone who believes that everything is wrong with them, and frustrated that the doctors can find nothing.  This is a situation that unfortunately is all too familiar to the cancer survivor  of a decade or more, who has not been followed up by more than a primary care physician.  An average healthy 30 year old will not really draw alot of attention for health issues, because there may be no history of concern.  But an average healthy-looking 30 year old will give off that same appearance.

And just as my original diagnosis of Hodgkin’s Disease was overlooked for a case of the common cold, so can issues related to the extreme treatments that were used on us so long ago.  Bodies of long term cancer survivors once again find themselves having their bodies betray them again as doctors attempt to use normal methods to common symptoms that should have typical responses.  But we cancer survivors do not fit the textbook.  Not just my body, but so many others’ bodies, betraying us all with our unusual symptoms.  Because the diagnosis is not obvious, we feel we are hypochondriacs, often times by our own tongue.

But then a major event hits, like a destroyed artery that needs to be bypassed, and the world of cancer survivorship begins to turn.  Up until recent weeks, the betrayals by my body had all been physical.  Two weeks ago, it has possibly become mental.  My mind is taking away the last thing that I hold in total control of my life.  I am losing my ability to internalize everything that I take on.  My body is betraying me once again.


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8 thoughts on “A Body’s Betrayal

  1. Excellent post, Paul. And so true about the hypochondria. I am sure the mere idea of it keeps many survivors from seeking medical help until symptoms become intolerable. As for the other incident, I appreciate that you are keeping your mind open, but get that PF test done to be sure.

    As for internalizing, maybe it’s good to learn you don’t have to take it all on, be the strongest. This blog is an excellent way to get some of that outside, express it, keep it from building up internally. Is it enough? I don’t know. I said before, trust yourself, and if that means listening to your thoughts that you might be losing that tight hold, then remain open to that thought. But get the medical stuff checked out too. 🙂

    • Judee, the scary thing about this simply being an anxiety attack, I know the way that I think, “I will be able to control this myself”, which I know I cannot, or can I? Actually during the last trip to the ER, they gave me nothing except running tests on me. I know how my mind will work the next time, I will make the decision to hold on even longer before calling for help.

      Internalizing, unfortunately, this is hereditary in my family. Even now in my mid-40’s it actually still occurs. I am the odd one for discussing anything especially publicly, but the majority of stuff, I will internalize.

      • Well, while internalizing might be a hereditary trait, I think it is more likely a learned behavior, and anything learned can be unlearned. 😉 You’re doing great, Paul. As for holding on longer the next time, why not make a decision to do the opposite, to ask for help sooner, rather than later. It might be good for you to let go of the controls from time to time.

      • Judee, I hear you, just as I have heard so many others trying to get me to back off. This behavior goes back generations, and at 47, do this all my life, I am being honest, I don’t know anything else.

  2. Fair enough Paul (in response to your last comment, there is no more reply button for that one.) I would just like you to consider one question, and whatever your answer, it’s fine, it’s okay, but do consider it before answering. Is this what you want to teach your daughters?

    Again, I am not saying anything is wrong with it. You are strong and have managed to get through what might have demolished a lesser person, so there are good things to offer your girls in lessons of self-reliance and fortitude. And, still the question, do you want to teach your daughters that in order to be strong they have to internalize their feelings?

    Saying the behavior goes back generations is fine, but does not prove that it is inherited, it can still be learned through family traditions. A child is a sponge and absorbs what goes on around him. I don’t believe anyone is a slave to their heritage, any more than anyone is a slave to their upbringing.

    It’s okay not to want to change. No one says you have to. And when your daughters are older, they will each develop their own attitudes and beliefs, regardless of what you do. But I still ask the question, what are you teaching them right now, what are they absorbing, and is that what you want them to learn?

    I’m not trying to give you a hard time here, Paul. Just hoping to get you to look at things carefully.

    In friendship, Judee

    • Judee, first I want you to know that I appreciate everything you say to me. Whether through cyber world or face to face, I always appreciate thoughts that are shared with me. I also know that I can be frustrating for those same friends, when I don’t seem to get it, no matter how obvious.
      I have done everything I can to not let my behavior influence my girls, and to the best of my recognition, they do not pick up on it. They are both little cuddle bugs, who reach out for help, and to help.
      There are attributes that I hope they do pick up from me, determination, respect for others and themselves, as well as not allowing others to determine their world. I think the way that I am trying to explain it, I believe that I have been teaching them to act rather than internalize. Did I understand what you were saying?

      • Yes, I believe so, and I’m sure you are doing a great job with your daughters, Paul. You have so much to offer them, so I am glad you are aware of how you are influencing them and making sure they get the best of you. I love what you said about taking action rather than internalizing. That is something many of us could learn from.

        Your daughters are so very lucky to have you as a dad. 🙂 So many parents simply don’t pay attention to what their kids are picking up from them. Or they approach parenting as one more aspect of their life that goes on automatic pilot. I knew you were not like that, just wanted to be sure you were “paying attention”. 🙂

      • And I rely on my friends being truthful with me. Sometimes I don’t recognize something, and it could be that one moment. You make the difference to me Judee and for that I am thankful.

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