Paul's Heart

Life As A Dad, And A Survivor

What You See Is Not What You Get


The very first day following my release from the hospital, following open heart surgery for a double bypass, as ordered by my doctor, I took my first of three walks around the block of my neighborhood for rehabilitation.  It was not to be any big deal, as I was taking several walks around the my floor of the hospital following the surgery.

But evidently, this was a big deal, to a co-worker of mine.  This co-worker of mine happened to be driving by me on their way to work, and felt the need to report to my employer that I “looked great”, and “there was no reason why” I should not be back at work.  Now, it was not to say that my co-worker did not believe that I actually had heart surgery, but my appearance gave him the impression, that in spite of losing 80% of my strength in less than a week, a very stressed cardiac system, and oh yes, a healing surgically repaired breast bone that would need months to recover, their opinion (not that it was any of their business) was that I was able to work.

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I know, it sounds totally ludicrous to expect someone to have a complete recovery from double bypass surgery in just days, and expect full participation in daily activities.  And yet, by one jerk actually stirring this pot, put me into a position of having to defend myself to various levels at my employer.

Over the last few weeks, I have had three friends be accused of “faking” their cancers.  Yes, “faking” their cancers.   My heart surgery situation was not the first time I ran into this ignorant behavior, as when I faced my battle with cancer, I had to deal with this behavior.  But as I read the stories posted by my friends, who have endured so much, being forced to publish personal information publicly, just to prove to one asshole, that their cancer was real.  It was not bad enough for me to see this happen to one friend, but it happened to another and another.

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Well, my friends really do have cancer.  In fact, at one point, one of them was given no hope.  Now I am just one of a dozen million cancer survivors, but just to protect people who cannot handle even hearing the word cancer, I put on a façade so that I do not make someone feel sad.  But it is up to that person to not make an assumption about my wellbeing.  I will try to look normal.  I will try to act normal.  Because, in spite of that not necessarily being in my best interest, that is what matters to certain people.

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I am not sure what drives a person to be so mean, as to question the health of another person.  Why, what business does someone even have worrying about another person’s health, unless they have been confided in?  But many in our society are just plain nosy, and when someone does not understand something, it gets completely dismissed as not being real.

Now, I am not naïve, there is at least some cause to this behavior, because at one point or another, we have witnessed someone actually faking a serious illness, or even just a sinus infection, just to get out of work or school.

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There are people who actually do “fake” an illness.  And there can be any reason that drives people to do this.  And dealing with Munchausen or hypochondria is a real issue as well.  There are also people who are just plain lazy and do anything to get out of working.

But for those who are legitimately battling a serious illness or injury, to treat them poorly or make accusations as to the validity of their health, which should only be of the patient’s concern, is unfair.  And to those who have faced this type of discrimination or harassment, you are not alone.  Sadly, this behavior of individuals treating those of us with disabilities is all to common, whether their reasons be ignorance or just plain malicious.  Though I know there will be a need to prove them wrong, no matter what the length (and I have done it several times), you do not need to prove anything.  For every jerk out there who says you are faking an illness, there are hundreds out there that not only believe you, but support you as well.

It’s All About The Timing


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There is no perfect time to be diagnosed with cancer.  Timing is critical in treating cancer.  I learned all about the reality of these two sentences upon my diagnosis of Hodgkin’s Lymphoma back in 1988.

Six months following my diagnosis, I was supposed to get married.  But because Hodgkin’s carried a pretty good cure rate even back in the 1980’s, the sooner I began my treatment, the better likelihood of success.  But I did not want my treatments to interfere with the big day for me and my fiancé (wife #1).  Imagine that, I was worried about how I would look, or interference in the plans for the rest of my life, not keeping focused that there might not be a life, if I wait too long to begin treatment.

But as the picture suggests, once diagnosed, time seems to spiral out of control.  From my diagnosis, I had to tell someone very important in my immediate life, before even my family.  But before that, as I drove to have this dreaded conversation, I passed by my employer.  The light was still on in the owner’s office, and so, not knowing how I was even going to go into the conversation with my fiancé, I pulled into the parking lot, and went inside the building.

Jeff, as usual, was working late.  He was unaware that I had this particular appointment, or that anything was wrong.  I sat down opposite him, and he could tell that something quite serious was on my mind.

“Jeff, I have cancer.”

I would guess that a minute had passed by, as neither of us knew what to say to each other.  And then a tear fell from his right eye, followed by another from the left eye.  That was not what I had intended to cause by my detour.  But from that moment, and the conversation that followed, it set the pace, and the standard for how I was going to fight.

Jeff assured me, that he was going to contact our benefits manager in the morning, and immediately upgrade not just my coverage, but coverage for everyone in the company.  I was the first person who worked for Jeff, that was diagnosed with cancer, and he felt responsible to “make sure” that I got “the best care that insurance could provide.”

That conversation would give me the missing direction I needed to fill, to have a conversation with a woman I was supposed to marry in just six months.

When I got to Judy’s parent’s house, I found them all waiting for my arrival as they were aware of my doctor appointment, and the fact that I got to their house 3 hours late, something was definitely up.  I asked Judy to come to the front room of the house, away from her parents.  This was a conversation that was strictly between the two of us.

“Judy, I have cancer.”  I did not beat around the bush, and just like Jeff’s reaction, only a lot quicker, tears came, a lot of tears.  I immediately hugged her, and allowed her to cry herself out, until she was able to have a conversation with me.  And almost as difficult as telling her I had cancer, there was a very important issue that had to be discussed as well.

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When diagnosed, cancer changes everything.  Anything you have going on in your life, takes a back seat in the majority of situations.  And between two who are not just boyfriend and girlfriend, but engaged, this was going to an extremely difficult situation to discuss.  It may sound harsh, but unless you are the patient themselves, you have no commitment to the process.  You are free to walk away.  Sure, there is a stigma about being a bad person for not sticking around someone in a dire time of need, but the reality is this, as much as a cancer patient is not prepared to go through this journey emotionally or physically, neither is a significant other.

I know plenty of people who have gone through their entire cancer journey from beginning, to survival, even decades later, and still remain as much in love as the day they met.  But I also know so many, whose relationships crumbled under the pressures and fears that cancer brings.  Cancer is inconvenient as a patient no longer has control of their lives, to be able to make appointments, take time to recover from treatments, and so on.  Cancer for the unintended caregiver, can actually become an imposition, “did not sign up for this when we started dating” or, there may even be other reasons why someone would have a difficult time dealing with a cancer diagnosis of a loved one.

One thing is certain, everything changes from the moment you are told, “you have cancer.”

And so, as Judy settled down, I had the following conversation with her.  I told her that things were not going to go as we planned.  There may even be a chance that I might not beat the cancer.  But any idea of what we thought we were going to have, was not going to be.  I offered her a chance to back out of the engagement for that reason, with no hard feelings.  I did not believe that I would be able to give her the life that she had probably dreamed of.  We could part as friends and I would not hold it against her.

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We made the decision we would stay together, and proceed with our wedding as scheduled.  I went through radiation therapy first, only to relapse right away following the wedding, having to go through chemotherapy.  But as someone who is not going through a cancer battle, preparing to get married, share the rest of your life with someone, is difficult enough without a major distraction of cancer.

I will go into the relationship in another post, as cancer would remain a part of my life even after treatment, but ten years later, we would be divorced.  But I am just one situation.  There are so many other relationships that I have seen over the decades, witnessing what cancer could not take away.  They are amazing couples, and now, that their cancer battles are complete, have returned to their daily lives, continuing to learn about each other, just as they were before the diagnosis.  Personally, I see a lot of great things for those couples.  Amazing and inspirational to so many.

Those Words – “You Have Cancer”


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As I mentioned the other day, it was around the upcoming Thanksgiving holidays, nearly 27 years ago, I heard the words, “you have cancer.”  Actually, it did not go that smoothly.  Just three words are spoken in just over a second.  The moment that I was told that I had cancer, actually seemed like hours.

It began with something so simple as an itch, a really bad itch.  Enough to make me want to scratch-my-skin-raw itch.  Five doctors later, and six second opinions as to the mysterious lump on the left side of my neck, I was finally directed to an “oncologist”, or at least that was the title on the sign in the lawn of the front of the building.  I was seeing a doctor, and had never seen a specialist before in my life, so “oncologist” did not send up any flags to me.  I was dealing with either an infection or injury.

I was led directly to an office which was odd for someone who needed to be examined, but I went along with it.  And then into the office came Dr. G.

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Yes, the pictures above described how I saw Dr. G from the moment he walked into his office, through the entire conversation that followed.  And this is exactly how the conversation began:

“Hodgkin’s Disease is a very curable cancer that is often found in young adults.”  So Dr. G went from the first square above, to the next square.  What they hell was he telling me this for?  And then his appearance began to morph through the next few pictured squares and uttered this comment (heard by nearly ALL Hodgkin’s patients), “in fact, if you are going to get a cancer, this is the one to get.”  Oh, hell, Dr. G just skipped all the way to the final square of the photo collage and became the fly.  The thing is, Dr. G actually did resemble Jeffrey Goldblum.

No handshake.  No stethoscope.  No physical exam.  Dr. G went from 0 to 100mph.  I do not even think he confirmed my name.  I am not exaggerating.  I know there was no handshake.  But this doctor had just diagnosed me with having a blood cancer.  I do not care how treatable it was, and most certainly was not wanting to get a cancer and somehow winning the lottery getting this type of cancer.

I would storm out of his office and never return.  His office tried several times to reach me over the next few days, urging that I return to follow through on biopsy plans.  I would eventually seek out a different oncologist, and yes, be diagnosed with Hodgkin’s Disease (that is what we called it before it was referred to as “lymphoma.”).

Wow, 27 years ago.  That is over half of my life.

Last year, just before my father passed away from lung cancer, my father was in the hospital.  Dr. G was still practicing oncology, and was in the clinic next to my father.

I apologized to Dr. G for my reaction and wanting to swat him with the world’s biggest flyswatter ( he was never told my analogy).  He said he was used to that kind of reaction.  He had told thousands of patients that they had cancer of some form or another.  No one ever told him, “hey, thanks for giving me that news.”  And though Dr. G’s bedside manner or tact in communicating the diagnosis had a lot to be desired, I am sure that I am not alone in how I reacted to him.  But I somehow get the feeling that I may be one of the few who actually apologized for the difficult job he had to do.

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