Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

13 Jul 2013

A Carnival Of Cancers


I would like to dedicate this story to two young people that I talk to about their cancers.  One has just celebrated one year of remission, the other, is approximately a month away from completing his journey.  Both have faced their Hodgkin’s.  One has beaten it, the other is almost there.  I am happy for both of you.  Your experiences during your fight with Hodgkin’s that you have shared with me, are truly an inspiration.  The support that you had from your families, should serve as the example of the support that all patients need to get through their fight with cancer. 

Whether visiting the boardwalks of the shorelines, or local carnivals, it is not uncommon to hear some barker call out to passer-byes to step right up, and win a prize.  While the games are fairly easy to win, the prizes are awarded by some ladder scale from small to largest, and when played long enough to get the larger prizes, come with quite a price.

But imagine if the dialogue went something like this:

“Step right up, come on over, give it a shot, it’s real easy.  Everybody gets it.  Is it going to be small or large?  How lucky you feeling?  And we have a winner!  It’s cancer, but not just any cancer.  Hodgkin’s Lymphoma folks.  He’s got Hodgkin’s Lymphoma!  Who’s next to test their luck?”

Of course this is a ridiculous premise, but I challenge you to find one person, who did not hear these words from an oncologist, “You are really lucky.  If you are going to get a cancer, Hodgkin’s Lymphoma is the cancer to have.”  I will let the doctor off the hook in a second, but for now, imagine, you have just been told you are lucky and that you have cancer.  What would your reaction be?  You have a deadly disease, remission or cure is not certain, but for you, the news is good.

For myself, I was in an office of an oncologist / hematologist.  I had no idea what that even meant.  All of the prior doctors that I had seen had been looking for some sort of cold, or perhaps an injury when one of them decided to send me to this place.  I was not even placed in an exam room, but rather the office of the doctor.  He walked in to the office, around his desk, sat in his chair, and then rattled off an obviously often rehearsed speech.  I have no idea how, but with just the first two words from his mouth, “Hodgkin’s Lymphoma…”, it triggered an automatic response of something I should never have known what it meant.  By the time he finished that first sentence, ending in “rare form of cancer.”, I had already guessed that is what he was already talking about.  Then I heard the word from him, “cancer.”  I knew I was in the wrong place, the wrong patient, the wrong diagnosis.  But he kept on talking.

“Hodgkin’s is rare, but it is also highly curable, at 85%, if you are going to get a cancer, Hodgkin’s is the cancer you want to get.”  I “want to get?!?!”  Seriously?  I wanted to get cancer, so I pressed my luck and came up with Hodgkin’s?  People die from cancer, and he is telling me that I am lucky?  Pardon me, but are fucking kidding me?!?!  I did not want cancer!  Let me be clear, I did not want it.  I did not wake up that morning, and make a choice between buying a lottery ticket or getting Hodgkin’s.  Clearly, winning the lottery, that would have required luck.  Cancer kills.  How is that lucky.

Now as promised, I have to cut the doctor some slack, but hopefully those who are reading this, and have been in this situation, not just with cancer, but any serious crisis, print this, and give this to the doctor to read.  Like I said, I am not going to hammer the doctor.  Let’s face it, next to a cardiologist, the oncologist has to deal with one of the most grim disciplines of medicine.  And if they have been practicing long enough, the tended to plenty of patients, whose prognosis were definitely more grim than today.  So there may be an oncologist who may not have the best or happiest bedside manner.  But hopefully we can get it across, by passing this on, there is no such thing as luck with developing a certain cancer, or how advanced a cancer is compared to another.

I would rather have had the doctor say, “I am sorry to tell you, that you have cancer.  Here are the statistics, and here are the modes of treatments used to treat it.  I am going to do everything I can to put your cancer into remission.”  It is that simple.

I was not lucky.  I was diagnosed with cancer.  I was treated with chemicals and radiation that were toxic and difficult to go through.  I was left with some permanent after effects from those treatments, some serious, some not so much.  The last thing I consider myself today is lucky.  But what did happen?  I tolerated the treatments.  My body endured.  My physiology was able to handle the all-out assault of the chemotherapy and radiation therapy.  This was not luck either.  My body did what it had to.  The treatments did what they had to.

Please, do not get me wrong.  It is no minor accomplishment that I am here twenty three years later.  I often wonder how the other three kids who were treated with me turned out.  Progress in the diagnostic techniques and treatments of not just Hodgkin’s Lymphoma, but many cancers has advanced so far in the last two decades, and from the times before I was treated.  Survival rates for Hodgkin’s has increased from 85% to 95%.  And there are many cancers that have achieved 100% remission or cure.  In spite of the positive direction that cancer research has taken in two decades, I know better than to tell the many newly diagnosed patients or those currently in treatment that they are “lucky that they did not have to go through what I did, or those before me.”  Patients today are still being diagnosed with a deadly disease, high cure rate or not.  We are not lucky.  We simply hope that we have made the right decisions in the doctor, the treatments, and have the right support team with us.  this is not luck.  We simply count on everything to go as the books say to do.

Posted in Cancer, Family and Friends and tagged , , , , , , | Leave a comment
28 Jun 2013

A Lie That Had To Be Told


Growing up as a child, I was always told that telling lies, no matter the severity, was wrong. 

As a parent, I still believe that, well almost.  I have done my best to teach my daughters the importance of telling the truth.  That lesson has been muddled with the difference between a lie and a fib, when convenience plays a factor, or even when it is for someone’s better interests.

Example one, you throw a rock through someone’s window, get caught, and then asked, “did you do it?”  You respond with a “no” and that is definitely a lie.  The window can be repaired.  And the basic science lesson of a pane of glass cannot withstand the impact of a solid object is proven.  But there are many consequences of that one lie.  First, the person being lied to has feelings, and they have been hurt – not necessarily by the act of the rock through the window, but being lied to.  In reality, all that person will want is for the window to be repaired and the incident not to be repeated.

Depending if the lie has been discovered, one of two things will happen to the liar (by the way, isn’t it confusing we spell “lie”, and “lies” or “lied”, but we spell the person who did it “liar”).  From the first lie, a reputation is established, one of mistrust.  If one lie has been told, how will it be possible to tell when the next one is being told, and so on?  Even if another lie is ever made.  But what if the individual gets away with that lie?  The chances are pretty good of a false sense of security of being able to fool somebody all of the time will develop.

The irony, that as parents, we always try to instill in our children the importance of not lying, until we get called out on it, mainly by example.  The telephone rings.  Your child answers the phone and announces it is “aunt Betty”.  You instruct your lacky to tell aunt Betty that you are not home.  After your child gets off of the phone, the inquisition begins immediately.  “But mommy, why did you have me lie to aunt Betty?”  And then the parent justifies the “fib” was not really a lie.  “I was just too busy and aunt Betty always likes to talk a long time and I just didn’t have that time write now” as you return to watching your television show.

There are literally dozens of examples when there seems to be a line drawn between fibs and lies, though both are exactly the same thing.

In the heat of a tragedy or crisis however, I do believe that this may be the one and only time that the line should be drawn, when it is to protect the person hurt, healing, or suffering.  During moments like that, everything should be done to minimize more pain, impeded recovery, or cause someone to just flat out give up.

My father had lost a window of time, from the time that he checked into the hospital for his surgery, until about a week after being placed in a rehab facility to recover from the aftereffects of the surgery.  There were things that he needed to know, and there were things that he wanted to know.  It was a willful decision that I made after discussing it, not to disclose to my father everything that had occurred to him, and what still was ahead of him.  As his consci0us awareness improved, only then did I offer him answers when asked.

But during his lengthy stay in the hospital, the purpose for which he went in, cancer surgery, because of everything else that followed, and decisions that had to be made, and consequences that would have to be dealt with any erroneous judgements, we had forgotten all about cancer.

The first question that my father had asked was, “did they take my whole lung?”  This was just days following the surgery, and clearly it was an answer that might help to motivate him by letting him know, “no Dad, they didn’t.”  I could tell the answer was a relief to him as a smile appeared on his face.  It was at this point that I realized how little my father knew, how few answers we had and clearly what was going to be ahead.

It was just after my father had arrived at the rehab facililty that the surgeon made contact with us, to discuss the results.  They did not believe that they were able to get all of the cancer.  Pathology had showed some residual cancer cells as did a biopsied lymph node.  My father’s cancer battle would have to continue with either chemo or radiation therapies.  Given what happened to him with the surgery, we know this is not going to be a decision to be made lightly, side effects to be taken very seriously and likely.  Most importantly, quality of life.

It had been just over a month when my dad finally asked me, “did they get all the cancer?”  I have been in this situation once before with someone so close to me, my grandmother, who passed away from complications of ovarian cancer.  The surgery was supposed to have taken care of it all.  At least that is what we had been told.  She passed just weeks later after preparing for what we were told was preventative chemotherapy.  “They don’t think so Pop.  Tests have not been confirmed that there could be more, only that they found more in what they removed.”  He looked at me as he knew I had this information long before he asked.

The conversation then turned to treatments, and what his fears were.  I have talked previously about misconceptions and stereotyped when it came to cancer depending on the decades.  Sitting in front of him, his own flesh and blood, I have survived cancer over 23 years, having gone through both radiation and chemotherapy, but it was his fears and apprehension of memories from what cancer was like, when his mother passed away, that he was afraid he would be subjected to.

Clearly, times are different with treatments and diagnosis.  But first things first.  He needed to get stronger and recover from his surgery and post surgical side effects before treatment could even be discussed.  Yes, with cancer, in most cases, it is all about the timing.

We met with the surgeon who said that there is going to be another conference with a tumor board to discuss what the next options will be.  My father’s recovery has gone well, he has gotten stronger, and clearer.

And by the way, if you are wondering just as my father and other family members, what is in the vacated space from the removal of the lung lobe… nothing.  The explanation we got was that the remaining part of the lung would actually fill in the space itself.  Amazing how the body tries to care for itself.

Posted in Cancer, Family and Friends, Side Effects | Leave a comment
19 Jun 2013

He Said, She Said


“Those who tell the truth have nothing to remember.”  Mark Twain

It is the most common type of argument between siblings, co-workers and their supervisors, sales representatives and clients.  One side claims to have said something or done something, and the other side says “no, you didn’t.”  In the world of “he said, she said” it often becomes a battle of wills, reputations, accusations, and hurt feelings by at least one of those sides.

When this type of issue arises in the younger part of our lives, the incident serves no other purpose really, other than teaching us who we can rely on.  But in the adult world, situations like this can have a major impact on our daily lives, on our futures.

The first job I applied for post-cancer, was for an insurance company rep position.  I was a sure thing as my step-father worked for the same company and had a great reputation.  It was a position that required licensing, so that meant studying and taking tests.  Of course, I went through all the other steps, application, interview, and had been doing quite well on all aspects of the hiring process.  Then they had me undergo a health physical.  It had been several months since my chemo ended, and I had been doing well rehabbing at the gym.  I had lost nearly half of the weight that I gained (yes, I gained weight during my chemo), and I had really built up a lot of stamina.  I was in probably the best condition I had been in for a long time.

About a week later, I got a telephone call.  “We wanted to know that although you have done very well with all the testing and preparations, after discussing your cancer situation with our home office, they would just feel better if you were in remission a bit longer.”  And there it was, my first taste of discrimination courtesy of a “nation wide” insurance company.  As hard as I worked to get back into shape, this is what my life was going to be like?

After speaking with my social worker, he made the recommendation that I file a complaint with the Pennsylvania Labor Board.  I have never been a person controlled or motivated by money.  This would be no different.  The biggest issue was the fact that there was a good chance I would never get hired anywhere, simply because I had cancer.  There would be no attorneys supporting me and my complaint, just my social worker.  Off we went to Harrisburg.

Neither of us knowing what to expect, we all met in a large conference room, and I was given the first opportunity to speak my case and I basically recited everything that I mentioned at the beginning of this story.  Then it was their turn.  Just when I thought it could not get any worse for me…

“Mr. Edelman withdrew his application.”  And just like that, my case was over.  Or so I thought.  After all, there was only a telephone call between myself and the district manager for this company.  It was my word against his… he said, he said.  Of course I objected.  I know what I said and what he said.  All that I had to do was prove it.  It was that simple.  Unfortunately, life does not work that way.

But it was not all bad news.  As I mentioned, I live life with principles being my main objective.  I was about to win at least part of my complaint, perhaps not for me, but for someone else.

There was a new law that had recently passed, that definitely many major companies were not prepared for, called the American With Disabilities Act.  The part of the act that this company was introduced to, and was required to make immediate sweeping changes to its hiring practices all across the country, was that an employer could no longer require a physical until after the job applicant was being considered for the job.  Seriously, how hard was it going to be to sell life insurance?  Companies are not allowed to even ask you anything about your health history until after they have made the decision to hire you.  Yes, that is a loophole, but at least you can get in the door a lot easier now.

This behavior by companies of all sizes, the old “he said, she said” trick is still widely used.  Unfortunately we are a mostly trusting society.  We epxect people to be honorable and keep their word, do the right thing.  But how do you protect yourself from not only being denied what you are legally entitled to do, but physically able to do as well?  Print.

Put everything down in writing.  In today’s media world, everything lasts forever courtesy of the internet.  Years ago it was convincing enough to mail something registered mail, and then faxing.  But still, when push came to shove, how could you prove what was inside the envelope or what was faxed.  Companies are much too smart for that today.  But one tool that is pretty much impossible to beat, is email.  Your email is mainly your personal access, your words, your time and date stamp, your proof of what you said.  Once “sent”, it is out there forever.

Here is how that situation back in 1990 would have been handled by me today.

I would have originally asked for an email address for contact purposes.  I would still send every correspondence the way the other party would request, whether it be fax or snail-mail.  But today, I would scan any forms and letters into my computer, then attach the document to the email and hit “send”.  I am sure that there will come a time, when companies will get around the time and date stamp placed by email, but for now, if someone wants that fight, I am willing to take that step.  It is not satisfactory enough to tell me I need to follow up with the submission.  If I do what is expected, then I have fulfilled my obligation.  That is how I solve “he said, she said.”

Posted in Bullying, Cancer, Education, Family and Friends, Politics, Side Effects, The Heart | Leave a comment

Post Navigation

← Older Entries
Newer Entries →