Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “August, 2013”

September Is Hodgkin’s Lymphoma Month

Political correctness… I hate it.  I mean, I understand why people wish to state things using certain words, avoiding others.  And perhaps there should be no better reason to express something in a less threatening and scary manner, than using terminology less doom and gloom.

I was diagnosed with a disease, cancer.  That is what it was called in the 1950’s, 1960’s, 1970’s, definitely in the 1980’s, and I believe still into the 1990’s.  I believe somewhere around there is when cancer “stopped being recognized” as a disease.

When I met my first oncologist, these were the first words out of his mouth, “Hodgkin’s Disease is one of the most curable forms of cancer.”  And there it was, I had cancer.  I had a disease.  But as I often do, I have a proof reader look over many of my pieces that contain information and facts about cancer.  When people read stories like mine, they are looking for information and experience and I want to make it accurate.

This year, something odd had happened.  In one of the speeches I wrote for Relay For Life, my proof reader had edited my speech, changing every mention of “disease” when it was preceded by “Hodgkin’s”, from “disease” to “lymphoma”.  There is no argument that Hodgkin’s is a form of lymphoma, a cancer of the lymph system.  But it is also known as a blood cancer.  And while I am puzzled by the decision to change “MY” wording of “disease” to lymphoma, believe it or not, there are actually discussion about whether a “blood cancer” (not just lymphomas but also leukemias) should be classified by something other than “cancer.”  That is a whole other post.  Cancer is cancer.  Whether it is a tumor or cells in the blood, the treatments are horrible and the prognosis are both good and bad.  Do we really need to argue over what is cancer?

Look at what is happening in society when we have a non-medical publication like Consumer Report, write an article stating that perhaps we should not screen as early or as often for certain cancers.  One thing that has always stood out in my mind, and have never forgotten, was being told “timing is everything, the earlier cancer can be caught the better.”  Science and medicine has proven this.  But a writer in a magazine states that might not just be so.  While it is true, screening might catch the cancer early, is it worth all the worry and hype and stress that it causes a person who is fortunate enough to not get the diagnosis of cancer?  Bottom line, anyone arguing over the value of cancer screening should just be glad that we have those discoveries and options available to us.  Unfortunately, the bigger picture which never gets mentioned is the costs that would be saved by not screening as many patients.  Sure, it would be hit or miss, determining who would need the screening, and of course some would not get caught.  But if missing one person’s early diagnosis meant saving millions of dollars, then that decision is worth it.  WRONG!

I was lucky.  I did not have the opportunity for early screening. but my Hodgkin’s Disease was caught early enough, even at stage 3B.  I was 22 years old.  The first patient I counseled with Hodgkin’s Disease was a 14 year old girl.  You can find my story about her called “Jennifer’s Story” under Pages.  14 years old.  Eight years younger than me, but she was staged at 4.  But Jennifer died.  Her cancer was not caught early enough.  My father now in the second week of his first cycle for treatment of lung cancer had his cancer discovered early not because of screening, but because his primary care used his best judgment and ordered a very expensive CT scan for a chronic cough.  His staging started out at 1 but through testing and biopsies was moved up to 3.  But his doctors believe his prognosis will be excellent.  Had he not had that cough, there was no planned lung screening for him, in spite of being a smoker for over 50 years and working in a quarry inhaling all kinds of dust.

Cancer is scary.  For too many, cancer is equated with dying.  Nobody knows that more than someone who has gone through the experience.  So I ask for understanding that I do not want to lessen my history by taking a word that sounds awful, disease, and substituting it for something less frightening.  There are bigger concerns in the world of cancer, those other than the medical professionals we trust to cure us are pushing to reverse the progress in the battle against cancer, and the only reason that can have any justification, is money.

September is Hodgkin’s Lymphoma Month.  I know that I will see lots of websites making mention of this, and many will have photos of purple or lime green ribbons as symbols for this disease.  The colored ribbons and rubber bracelets are a great idea to bring awareness to the cancer I had faced.  But there is no better awareness than seeing someone who actually faced cancer, and survived it.  Look at the survivors all over the world.  There are millions of us.  I have met hundreds of Hodgkin’s patients and survivors, and over a thousand other cancer patients and survivors.

For the sake of others who are just being diagnosed, or are in the middle of their treatments, or approaching the end of their cancer journey, it is because of awareness such as this month is dedicated to the cancer I faced, that there are newer and more effective treatments with better promises for success.  And since we do not have a 100% cure for this particular cancer, more efforts still need to be made to find that one option that will allow everyone to hear the words, “you are in remission.”

I had Hodgkin’s Disease.  I am cured of it for over 23 years.  And…

“for those in remission, I will keep looking in my rear view mirror to make sure you are still following me.  And if you are not on that road yet, I will drive slow enough for you to catch up to me.  But hurry up would you?”


A Survivor To Be Proud Of – An Example For All

Today is a great day for a young man named Michael.  From the day he was born, neither he, nor his parents, nor his sibling ever thought in their wildest dreams that today, August 27th, 2013 would be such an important day.  Today Michael and his family got to hear a word that was unknown to them in meaning and value before today, “remission.”  Today Michael was told by his doctor officially by his doctors, that his Hodgkin’s Lymphoma was now in remission.

Michael did not volunteer for this journey.  As a young adult, I am certain that he had other plans for his future, such as continuing his education, which he now will have the opportunity to pursue should he choose to do so.  From the time that I have known of Michael, I have never heard or seen anything less than a child facing a horrible disease with bravery, determination, and endurance.

His battle with Hodgkin’s has left him with some visible scars that will eventually fade from our memory, hair loss, weight loss, and some side effects that we cannot see such as a challenged immune system.  Not once did I ever hear of Michael complain about what he was going through, only that he would get through this.

Just one of a parent’s nightmares is to be told that her child has cancer.  Yet his mother never, ever had anything less than hope for her son.  Every day she cared for her son, took Michael to his appointments, comforted him when he did not feel his strongest, gave him nourishment and medicine when he needed strength.  What I saw in this mother’s heart was a complete sacrifice of herself to care for her only son, selflessly and without condition.

In all my years of talking with cancer patients and survivors, I normally do not get emotionally attached to anyone.  As with so many our professional caregivers, we cannot afford to.  Unfortunately not every story has a happy ending.  But this one does. For the first time in over two decades, I took a special interest in Michael, and no one could be more proud of him than me.  Just a little over a month ago, I heard that Michael had already been referring to himself as a survivor.  Michael, you are the truest definition of a survivor.  You have definitely earned the right to be called a survivor.

It is a safe bet that this family will sleep very well tonight.  They have been through so much and have finally come to the end of the road and dealing with Hodgkin’s Lymphoma.

And Michael, if you are reading this, this is for you my young friend…

“As I continue down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.”

Congratulations Michael.  May you enjoy the many years ahead of you, just as I have, and so much more.


#1 Down

Last evening I wrote about two different journeys that shared the same date.  I am waiting to hear the results of the “kid” who had his first PET scan post treatment,  of which hopefully he and his family will hear the word “remission.”

But today was my father’s first treatment against lung cancer.  Surgery was originally expected to take care of the cancer, but it was later felt that some preventative chemo would best provide and maintain remission for him.

My father had confessed to me, just moments before his appointment, he had contemplated backing out completely.  He still was not convinced that he could endure the toxic compounds that were going to be pushed through his veins.  But here we were at 11:45am walking into the lobby of the Dorothy Morgan Cancer Center at Lehigh Valley Hospital.

He registered and was then escorted back into the chemotherapy suite.  The entire room ran the length of the building, with a chemo chair in front of each window.  I counted close to fifteen.  My dad was walked back to the 11th chair and sat down.  The nurse inserted his IV line which would facilitate the poison that was going to work for the good to get rid of my father’s cancer.

Then the last thing I thought would have happened, happened.  Rose, his nurse, asked him if he would like anything to eat.  She rattled off a list of items from sandwiches to snacks and beverages.

The first medicines administered were to handle the obvious nausea that may occur.  The whole time, Rose is explaining everything that is happening.  She is a good comforter.  In less than an hour, my father was given the first drug to make sure his cancer went away, and stayed away.  The drug took about 3 1/2 hours to go through the IV lines into his system.  This was the one drug that my father had been concerned about as there was a good chance of having an allergic reaction to it.  That was the bad news.  But the good news was, if he did have an allergic reaction to it, they would know within the first fifteen to twenty minutes, and would be able to respond to the reaction.  After the first half hour, we all breathed a sigh of relief as there was no reaction.  We would just wait for the drug to finish its administration.

Once that first drug was done, on came the second drug.  This would take about a half an hour to be administered, but it did not carry the allergic reaction risk to it that the first drug did.

By the end of the first treatment, nearly six hours later, my dad uttered something I never thought I would ever hear a cancer patient ever say about chemotherapy, and I’m sure not something that is heard every day in the chemo suite, “that actually was pretty good.”

I feel good for my father.  Unlike my first chemotherapy appointment, where it was a race against the clock to get home before I would puke my guts up, my dad felt as if when he had walked through the door of the chemo suite.  The first chemo appointment for him was going to be crucial as he had not made up his mind yet that morning that he was even going to go through chemo.  But once there, depending on how he felt with the chemo, would most likely determine if he would be back for #2.  So far so good.

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