Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

You Are Too Young For This


If I had a dollar for every time I heard this phrase… “Oh my God, you are too young for this…”

  1.  I was diagnosed with cancer at the age of 22 (Hodgkin’s Lymphoma).  Barely adult of age, the stereotypical age of cancer was at least well into adulthood.  But here is the fact.  Cancer does not discriminate.  Hodgkin’s Lymphoma is one of many cancers referred to as a “pediatric cancer.”  That’s right, a cancer that is known to strike children, as well as adults.  The truth is, there are many types of cancers that affect children not just as young as toddlers, but there are even reports of infants being born with tumors.
  2.   Following the staging laparotomy for my Hodgkin’s (to determine how bad it was), my spleen was removed, liver was biopsied, as well as other lymph nodes, I was told I would not need physical therapy to recover because of my youthful age.  I would bounce back with no problem.  Here is what happens with that kind of surgery.  Doctors make a huge incision in the abdomen to do all of this work.  That means they go through all those abdomen muscles  that on some are referred to as “six-pack abs.”  This area is often referred to as your personal “chi”, your structural strength responsible for good posture and such.  Not that I had any six-pack abs before, I definitely had not shot at them following the surgery, not because of the surgery, but there was no training to strengthen my abdomen muscles.  With the pain I was dealing with during the long healing process, it was never going to happen, especially without any physical therapy.                                                                .
  3.   In April of 2008, as I am laying on an operating table, naked, covered only by a thin blanket, having all kinds of tubes and wires being connected to me, I heard one nurse quietly (though obviously not quietly enough) say, “Oh my God, he is too young for this.”  I had been diagnosed with a “widow maker” heart blockage which is clearly what they had been used to seeing in someone who was overweight, a heavy smoker, or even just older in age.  But I was treated with high dose radiation (four times the lifetime maximum exposure limit) and toxic chemotherapy medicines that caused this extreme damage to my cardiac system at the age of 42.
  4.   Once I had been cleared by the surgeon following that open heart surgery, I began cardiac rehabilitation.  Man, if the nurses thought I was too young to be on that table, the looks I got from other patients, much older than me, reminded me of a southbound train ride with “snowbirds” travelling to Florida in my early 30’s.  Clearly I did not belong there, or so they felt.
  5.   In 2013, my career took a very much unexpected turn.  A combination of circumstances between my health, and business restructuring, I would have to finally except the decision to pursue disability.  I had already been reluctantly labelled as “handicapped” (parking placard included), but as my employer up until this moment, had been accommodating the many physical health restrictions allowing me to still be able to perform certain work functions, while dealing with my health (should be noted, this is required of the Americans With Disabilities Act – something I have written in the past about), a mutual understanding was reached between the company and I, that upon an updated review by my doctors, and considering a staff reduction, there was a likelihood that I would no longer have any work to perform, and therefore they would assist me with applying for disability.  I thought accepting being referred to as handicapped was tough.  Being told as a 3rd generation blue collar worker, that I was no longer able to do my job, which I had performed decades even through all my health struggles, was the most difficult thing to accept.  One part of my life, no longer had any purpose.  The one thing standing in my way of the approval process, my age.  I was too young.  Granted, there are many on disability that are much younger than me, but nonetheless, it is an argument that is made for some, and was made in my case.  In a word process, it was determined that not only was I disabled, but only from the date that I turned 50 years of age.  There was no denial when my disability began, but they would only consider it effective at age 50.
  6.   Following a second surgery earlier this year, it was decided that I would need to undergo another round of cardiac rehab to help control my blood pressure.  I take several medicines to help do this, and for the most part, I have reduced most of my stress with one or two triggers remaining.  But, here I go again.  The average rehab class age is around 70 years of age.  And once again, I am getting the looks from those who wonder what I am doing there as I am too young by their judgement.                               

I have gotten used to hearing the “you are too young for this.  In fact, at this point, if I did have a dollar for every time I had been told I am too young for this and that, I would be able to enjoy the local pizza special for lunch today.

Yes, I know, neither of these are good for me.  But given what I have gone through, I do have some things I still enjoy, and honestly, this will not have an impact on what has been done to my body by science.  Plus, I am ending this post on a pleasant note, and tasty too.

They Just Don’t Get It


I am just so frustrated right now.  They just do not get it.

From the moment we are diagnosed with cancer, we not only want to get done with it, we want to be able to get over it, and get beyond it.  We look forward to the day that we hear about the magical “5 year mark”, that unofficially makes us “cured”, or at least in society’s eyes, less likely to hold our cancer experience against us… A.K.A DISCRIMINATION!!!

Many years ago, it was discovered, that many cancer survivors, particularly with Hodgkin’s Lymphoma, because of the extreme levels of radiation, and the highly toxic chemotherapies used up to the turn of the century, were developing issues because of the treatments that saved their lives.  In the late 1990’s, protocols soon became established to begin following up cancer patients “for life”, not just for the possible return of their cancer, but to make sure any late developing side effects that would develop, would be managed at an earlier stage, than allowed to proceed to the level of a “widowmaker” like I experienced, or worse.

Here we are, two decades into the new millenium, so much more experience and knowledge, and yes, many doctors and caregivers now recognizing the need for follow up care for life, and still, I am seeing posts like this:

“I’ve been told that I no longer need to do my yearly check ups, as a matter of fact, the doctor says I don’t need check ups for my HL at all anymore. ”

While I am extremely happy for this young nearly 20 year survivor of Hodgkin’s Lymphoma, I am dumbfounded, as she explains that she does have some late effect issues, her doctor does not seem to be concerned, presenting her with the opinion that he is washing his hands of her, convincing her of his obvious release of any problems.

She had been treated during a transitional time when radiation therapy amounts were being reduced and more targeted, and the toxic cocktail of chemotherapy had also been modified, but still contained two of the most brutal ingredients in that treatment regimen.  One of those drugs that was personally responsible for the demise for the death of a 24 year old friend of mine five years ago, surviving his Hodgkin’s, only to die from the noted rare effect of the drug, simply because the doctor did not follow the follow-up protocol that was available.

http://www.survivorshipguidelines.org/

THE INFORMATION IS RIGHT HERE!!!  WHAT THE HELL IS IT GOING TO TAKE FOR MEDICINE TO WAKE UP AND REALIZED THEY NEED TO DO MORE THAN JUST CURE US OF ONE DISEASE TO LET US DIE OF SOMETHING ELSE?!?

I am just a normal human being, no doctorate degree in medicine.  But I did my research.  I share the information just like the hundreds of other long term survivors I know of, that tell of the many issues we face, and yes, why we face them.  Together, we all try to inform and educate doctors and nurses, for many, our primary care givers who were never taught the issues we have to deal with, yet rely on them for the diagnosis and treatments.

The Children’s Oncology Group website is the most accurate guideline for treatment and follow-ups for many cancers and their treatments.  It has been created by the experts.  It is about time that doctors understand, we do not have a choice once we have had cancer.  We may be done with the immediate, but it is the future that we need to manage.

I am quite happy for the young woman who shared her post, and have encouraged her to refer to the above website, and to immediately seek out a survivorship clinic, which clearly is more equipped to deal with issues she already has, rather than just be released.

Not Kids Anymore


Happy Halloween everyone.  It seems like all my friends are recognizing today not as the sweet and tasty, fun holiday that we once grew up with, but instead, remembering how this day changed for us many years ago.  And just like my friends, my daughters are now “too old” to dress up and go knocking door to door, offering tricks if treats are not bestowed.

But it is not just Halloween that has changed for us.  My daughters are in the later stage of their childhood, which means it is now time to talk about other things besides Dora The Explorer or going to the beach.  My daughters know the trove of memories I have to always cherish their childhood.

No, today, our conversations are geared more toward the adulthood, rapidly approaching.  From their interests, continuing education, where to live, the questions are coming out, “Dad, how did you decide…?”

The cool thing is that both kind of have an idea of what they want to do.  Like all children, their minds have changed frequently.  But now they select courses in school, which pertain to their interests.  They realize that a part of deciding what they want to do, is where, and will it be something they can do for the rest of their lives.

Two years ago, my oldest actually hit me with this question out of the blue, “Dad, is $55,000 a good salary?”  And just recently, my youngest asked a similar question, “Dad, how do you decide where to live and how much money is enough to make?”

Yep, I am done reading bed time stories, singing lullabies.  It is time to get serious because the things they learn now will impact them the rest of their lives.  More than half-way through my life, I have a pretty good grasp on what should be really important in life, and how to have the best opportunity to be happy.  A lot of mistakes were made along the way, but I feel I have the right words for my daughters.

“Whatever you do, do not plan your future on how much money you will make.  Money is not everything.  And it is true, money does not buy happiness.  Being irresponsible with money decisions can actually be devastating if you are not responsible with your decisions.  Learn that there is a difference between “need” and “want.”  Take care of the things you need first.  But before you can earn any income, you need to find the career that you will not only be happy with, but passionate about.  Because that is where you will truly enjoy your life, doing what you enjoy doing.  If you go to work everyday, doing something you had not intended on doing in your life, it is going to be a chore.  But find something to do, that you are not only good at, but enjoy, and every day you will be happy to go to work.  In fact, it seems almost hard to call it work when you enjoy it so much.”

My younger daughters showed me a tool that is available to kids today, through the federal government, that actually shows career prospects for the future, and geographically where specific jobs will be the most in demand.  Of course, back in the 1980’s, I never had this resource.  I explained to both of my daughters, use this tool to decide where you will eventually choose to live, based on what you will want to do with your life.  And then, depending on where you choose to live, the cost of living will determine their necessary salary.

But I stressed to both, it is important to not be “married” to their job.  Simply put, live within your means.  Do not put yourself in a position, where your employer knows you have no choices available.  It is this pressure, such as buying a house that you cannot afford, spending frivolously that can turn a job you enjoy doing, into a ball and chain, making you dread each walking day.

From there, the conversation continues about money and how to handle it.  It is important that they do not make the mistakes that I made.  As they are both quick to point out, “the whole reason of studying history is not to repeat it.  So they are learning that while credit is a necessary evil, I am trying to get it across to them, to only use credit what they have cash to pay off right away.  That credit is not to be used, with the exception of a car or house, to purchase things just because you want them and do not have the cash to pay for them.  This mentality leads to disaster, and often, repeated.

I can tell that they understand.  I wanted to have our financial issues straightened out before they grew older, but this was a constant struggle.  My hopes are that they learn from my examples and remember the things that I have told them, so that they can do better with their financial future.

Boy I sure do miss those chilly Trick-or-treat nights.  They sure were much more fun than all this serious talk.

Happy Halloween everyone.

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