Paul's Heart

Life As A Dad, And A Survivor

There Is Only One You


I am doing some housekeeping.  It seems that I have over 250 prompted posts that I have not published, just sitting there.  This is on top of the nearly 800 I have already written.  I recently just completed an annual writing project that I have done for the last seven years.  That story will be published here some time in March.  In all of this, I now have four book ideas that I need to finally “get off of the pot” and get writing.  So, I will get at least one of those posts sitting in my cue published.  It is a bit of a public service announcement, more than about my survivorship or parenthood, though clearly both have been and can be impacted by the topic.

Lock yourself out of your Apple product, or worse, completely forget your super secret information that was originally given when you purchased an Ipad.  What happens?  You are “SOL”, or sh*t outta luck.

Just bought a really cool game system used at a yard sale?  But when you go to sign up for programs or apps, you get a message that the unit has already been registered previously (obviously by its previous owner).

This lengthy number is located just inside of your car’s windshield.  Literally, it is called a vehicle identification number or VIN.  It is a unique identifier to the vehicle and its owner.

We here, in the United States, have our own unique identifier, called a Social Security Number.  This set of digits is just as important as a car’s VIN, a TV game console serial number, or Ipad model number.  Unlike the list of these and many other material items, the security of our SSN, is not only not taken as seriously, is also not as protected.

It is likely at some point in a person’s life, some form of our personal life will be breached, whether bank records or even a social media account.  We deal with any issues that arise with corrections and alterations and move on.  Usually these “hacks” often go without apprehending the individuals committing the illegal acts, often because it is too difficult to determine.

But for being the 9 most important numbers in a person’s life, there are not enough protections in place, and definitely not enough enforcement when incidents are discovered, and luckily solved.  In fact, even if you are a victim of identity theft or identity fraud, involving that SSN, you keep that same SSN.  You do not get a new SSN.  What you get are a whole lot of extra security steps that will get attached to your number, that you will have to remember, but also change everything else associated with your personal life such as bank accounts and credit accounts.  Everything will need extra security steps to help insure your security.

I have studied this issue, because I myself was a victim of identity theft and identity fraud involving my social security number.  And it was not because of anything I did, anything I told anyone, or any of the many forms I filled out that required me to submit my social security number.  My social security number was actually stolen.  But unlike many cases that remain unsolved, I know who did it.  I know who used my information.  The frustrating thing, was in spite of me knowing this information, I was unsuccessful in court not only in having the individual held accountable for his actions, but having the judge totally dismiss the accusation all together.

Having possession of something that does not belong to you, by any means committed, is theft.  Using that illegally possessed information is considered fraud.  I cannot explain what was missing in leading the judge not to protect me, but I do know this much.  I have made all of the corrections I needed to for my privacy.  But also, if I discover anything else being perpetrated against me, my finger will be pointed in that individual’s directions.  At some point, legally, this will catch up to him.

But in the meantime, I want to share this with you, to help you protect yourself.  Because that is what Paul’s Heart is about, sharing my experiences to help you deal with your situations and overcome any obstacles.

The most thorough process you can find to help you deal with an act of identity theft or fraud, can be found at identitytheft.gov operated by the Federal Trade Commission.  They will take you step by step what you need to do right away, soon after, and how to repair.

The first thing to do is to contact whatever entity was affected, where you know the theft or fraud occurred.  You need to have a fraud alert put on any and all accounts, and possibly consider a “credit freeze.”  The easiest way to figure out who all you need to reach out to, is to get a credit report from all three credit reporting agencies (Experian, Transunion, Equifax).

Once you have done all the notifying, then you need to get to the repairs and corrections.  Fight all fraudulent claims.  Close every account you have and open new, with the extra fraud protections.  I mentioned a “fraud alert” and a “credit freeze,” both of which are meant to do the same thing, protect you, but the alert still allows you to have access as long as verifications are made and is free to have done, and lasts for seven years.  The freeze stops all access until you lift the freeze, with fees depending on individual states, and lasts until you remove it.

Of course, like I mentioned, close every account you have, and open new with the added safe guards.  Of course identity theft and fraud does not limit itself to just credit and social security, but also for taxes, child identity, and even medical theft.

If a company loses your information, or it is breached, you can count on that company being held accountable.  It is when the theft occurs by an unknown person that the uncertainty of a resolution will cause the most stress.  Even as I pointed out, even though I know the identification of the individual, the law was actually used to allow that individual to steal my identity and commit an act of fraud.  But as I said, with all the protections I now have in place, any future attempt, he will be the first one accused.

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.

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