Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “March, 2017”

Cancer No Match For This Cop

I am always willing to share stories of other cancer survivors on “Paul’s Heart”.  One of the missions of this page is to provide inspiration and hope.  And to do that, you have to do more than just take my word for it.  So, just like other stories I have shared, please meet Glen.

Glen is a former police officer for the Escondido police department which being a cop is something to appreciate by itself.  But like me, Glen is also a long term survivor of Hodgkin’s Lymphoma.  In fact, he has 2 years on my 27 years of survivorship.  But also noted, he has not only battled cancer once, but three times.

Glen’s story is an inspiring one for a number of reasons.  Glen is married to his wife Debbie over 30 years.  For many men who were treated for Hodgkin’s back before the 1990’s, sterility was almost guaranteed for men.  Yet not only did Glen and Debbie have three children, they are also grandparents.

Glen and Debbie recently co-authored a book titled, “Overcome – A Story of Intervention, Rescue, and Redemption”, based on their approach to dealing with the many aspects of facing cancer.  Together they explain how the two of them got through his battles, and where they drew their strength from.  The book is available on Amazon so I do not want to spoil any of the good stuff in the book.

Glen and his wife were also featured in a news story of the Times-Advocate, printed in Escondido, California.

There are many inspirational stories of cancer survivorship.  And if you have one, I am always willing to share them through “Paul’s Heart”.

HR1313 Is A Bad Thing, And Not Just For Cancer Survivors

This is going to be a difficult story for me to post, because as my readers know, I do what I can to avoid talking politics and religion on this blog.  I do my best to navigate any advocacy issue without any bias towards left or right, religion or lack of.  But as a survivor of cancer, and a multi-victim of discrimination because of my health history, HR1313 is a topic I need to write about.

HR1313 is a new bill, called the Preserving Employee Wellness Programs Act, being introduced by our government representatives.  And while the name of the bill looks harmless enough, as the expression goes, “don’t judge a book by its cover.”

So let me start at the beginning, to state my qualifications and experience with the topic of this post.

After nearly two years of battling Hodgkin’s Lymphoma (1990), though I was not unhappy with my employer, I was still looking for opportunities to improve my life financially.  This meant investigating new job opportunities.  My stepfather had recommended that with my personality and charisma, I would be perfect to work in the insurance industry.  He was well known in his company and would do what he could to help me get hired.

I met with my stepfather’s boss, who outlined what the hiring process would involve.  There would be studying for licenses, other interviews, the application itself, and a medical exam.  I was confused as to the need for a medical exam, as any of the other jobs I had held previously, never required a physical.  Only school had required these at certain periods of my childhood.  The manager had said there would be things I could do to save time while I studied.  Getting the physical out of the way was one thing that could be done.

So the physical went as expected.  I was in remission from my cancer.  My body, other than being a little overweight yet from treatments, was in good shape.  A couple more weeks went by.  I continued my studies, doing well on all the exams I was taking.  I completed my application, and participated in an interview.  A couple of weeks later, I received a phone call from the manager.

“Hi Paul.  It’s Jim.  Listen, I was on the phone with the district office, discussing your application, and the home office feels that it we need you to be in remission from your cancer a bit longer.”  I asked, “how long is ‘much longer’?”  To which he responded, “well, it’s tough to say, you just finished your treatments recently.  But you can always try again.”I hung up the phone in shock.  I beat cancer, and I was being discriminated against for it.  Was it going to be like this for the rest of my life?  No one giving me a chance?

I took the manager, the district office, and the insurance company before the labor relations board for discrimination.  I was not even suing for money.  I wanted their practice of discrimination to be punished however.   With the help of my therapist, and a lawyer, this insurance company was in for a rude awakening.

In 1990, the American With Disabilities Act was signed.  It was a law created to prevent discrimination in all settings.  For the purpose of this post, I am referring to employment, specifically hiring practices.  The insurance company representatives were going to be some of the first introduced to the new law.  It was now illegal to have an applicant subjected to a physical without the intent being to hire.  In other words, the physical could only be demanded once the other requirements are met, and employment would then pend on passing the health physical.  It was at least a moral victory.

The lawyer for the insurance company then accused me of withdrawing my application so my complaint had no merit.  Of course I did not withdraw.  I know what I heard.  And it was awful.

The ADA is not perfect.  While on paper, it says it will protect people with disabilities from discrimination, but the reality is, if someone wanted to discriminate against you, there would always be a loophole.  Like saying someone changed their mind verbally about future employment.

Over the next many years, I would find myself fighting management repeatedly over challenging my ADA rights.  I would also watch others, not assert theirs.  Sure, they would complain about their treatment, and at times, allow their conditions to get worse, but they always kept their mouths shut.  Worried about retaliation from management.  At what cost?

Then in 2008, the Genetic Information Nondiscrimination Act was signed.  This was a bill that was intended to prevent discrimination based on genetic predispositions.  With technology developing, it should be a good thing that science has been able to find out who might have higher chances of developing a serious illness or physical condition.  But in the hands of an employer or insurance company, genetic testing would become a backdoor loophole to discriminate against employees or clients.  This law at least on paper, is meant to prevent that.

But now comes the Preserving Employee Wellness Programs Act, HR1313.  While it is unclear whether this bill being created is something that will allow employers to demand of its employees and applicants, or whether it will be voluntary, is nothing but a bad thing.  Back in 1990, I volunteered to a doctor, who I was sent to for a physical by the company – not my own personal physician – and volunteered that I just completed treatment for cancer.  Even if this is a voluntary effort, volunteering information to an employer that they have no legal right to know, is setting yourself up to discrimination.  Of course, they cannot tell you that you are not hired because your genes say you are more likely to have a heart attack or develop cancer.  But knowing your genetics in advance of employment or during your employment, gives the employer and opportunity to develop the loophole necessary to deny you, or terminate you.

It is shameful that this effort is under the guise of “enhancing” wellness programs at work, which are a good thing.  But knowing someone’s genetics, is clearly being used to discriminate in either hiring (which the employers will never admit), and also to discriminate employees’ insurance benefits.  Good genetics will get lower insurance rates.  Bad genetics will get higher rates.  DISCRIMINATION!!!  Anyone who has had to fight a serious disease such as cancer, should never have to fight so hard for something they need such as insurance.  Instead, efforts are underway to make it not only more difficult, but financially out of reach.

You want a real good “wellness” program?  Scheduled breaks.  Better pay.  Health insurance that encourages preventative visits.  Less stress in the workplace.  But knowing the genetics of an employee?  That is just a tool for discrimination that an employer should have no right to.

Once you open this door, like toothpaste, once it is out of the tube, you cannot put it back in.

A 27 Year Fight


Today marks the 27th anniversary that I heard the words, “you are in remission.  Go enjoy your life.”  Some cancer survivors recognize their anniversary date as the day they were diagnosed at which point, would put me then at nearly 30 years since I was diagnosed with Hodgkin’s Lymphoma.

I have made this bitter-sweet announcement every year.  I do not celebrate this day.  It is not a day I wish to celebrate, because there are so many that I personally know, or have known, who have never even gotten to hear the word “remission” or continue to struggle.

I continue to struggle with Survivor’s Guilt as I have right from the beginning… why am I still here, and other’s not?  Hodgkin’s has a survival rate of over 90%, which in spite of being a rare cancer, is still a very good cure rate.  And thanks to survivors like me, with similar longevity of survival or even greater, yes, there are many who have survived Hodgkin’s longer than me, patients today are treated with a much finer tuned treatment, with similar success rates.  But for those same survivors with the same longevity as me, we have been left with so many late developing side effects from the treatments that saved our lives, and medicine was not prepared for our health issues.  Imagine being exposed to four times the lifetime maximum exposure of ionized radiation, chemicals that destroy the heart, chemicals that are actually used to poison in warfare.  That is what I and so many others have been exposed to (or more).  For many of us, these late effects have been worse than the cancer.

Yes, like I said, I do not celebrate this day, I continue to fight for this day.  In 2008, I suffered the first of three near fatal episodes caused by the late effects from treatments (heart, pulmonary, sepsis).  From day 1, I have had to fight for my rights as a patient.  Every day, I fight against discrimination for reasons such as employment, insurance, or just someone who feels that I get favorable treatment just because I had cancer.  There have always been emotional issues to deal with, as clearly, my life that I had planned as an adult would never be the same.  I am the only survivor of six in my family to be living after cancer.  Cancer has taken three grandparents, my sister, and nearly three years ago, my father.  I have said “goodbye” to so many, of all ages, either from the disease itself, or complications of the late effects from the treatments.    Last year was one of the worst in terms of fellow survivors that passed away.  I am so fucking tired of dealing with cancer.

But what is it that was the deciding factor that I would beat a disease that as a child, all I had ever known about, was everybody died who got cancer?  Ok, clearly, there is no end to how far I will go to fight for my survival.  I may lose battles, but I will never give up fighting.  Those who truly know me, know this fact about me.  My daughters were not around when I fought my battle, but they have witnessed what the late effects have done to me.  And they know how much they mean to me.

So what else could have contributed to my longevity?  Luck?  I am sure a part of that played some sort of role.  But I am driven today by my children.  I am hopeful that someday they will learn that cancer can be prevented.  They have personally witnessed my support of other cancer patients and survivors and know what it means to even just be an ear for someone to talk to.  My primary care doctor has learned about long term cancer survival from me, as well as the specialists responsible for my care.  In fact, one doctor has made it his mission, to make sure I get called “grandpa” some day.  I am not rushing that day either.

I have support from people near and far, old friends and new friends, fellow survivors, and many, just good-hearted empathetic people.  I have met hundreds of other survivors in person, and have befriended thousands more on-line that I may never even physically meet.  And my closest friends, do a great job, of making sure that I take care of myself.  The fact is, there are probably many reasons why I am still here.

And for that reason, I am going to continue to fight everyone and everything.  I am going to fight for patients’s rights.  I am going to fight to educate medicine to learn there is a whole society of people who have survived a horrible disease, and has left them battling side effects that for many, just do not make any sense.  I am going to continue to fight discrimination in all its forms.  I am going to continue to fight for not only affordable health care, but the care necessary for survival.  I am going to continue to fight our government to make sure that myself, and others are not only not forgotten, but that we get the care we need and not dismissed because, well… our “bodies have been through too much so we’re not going to go to any extra lengths to treat” me.  I did not ask for these late effects, or the negative ways that I have been treated because of them.  And I will fight against anyone who says it is not fair to them that my burden of health should be placed on society.

You can see on my counter, I am approaching another huge milestone in just a few years.  Clearly I am counting on a lot more fight left in me.

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