Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “March, 2015”

31 Mar 2015
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My Dad Was Just Like Me


Every year, I make a contribution to a book called “Visible Ink.”  This is a book published via Memorial Sloan Kettering Cancer Center, written entirely by cancer patients and survivors.  This year, marked the seventh edition.  I submitted two pieces, and the following piece is the chapter that was selected for this year’s book.  The story is very personal to me, a tribute to my father who lost his battle of lung cancer last May.

Birth photo 1965 dad and I 1

“Like Father, like son.” A timeless expression echoed by the lyrics to the song, “Cats In The Cradle,” popularly recognized from Harry Chapin. The song tells the story of the birth of a son, the absence of the father in his life because he is trying to provide for his son. When the son is grown and on his own, the father tries to capture moments of fatherhood, only to find out his son is busy juggling his own life between work and family. One of the final lyrics in the song, the father says, “As I hung up the phone it occurred to me, he’d grown up just like me. My boy was just like me.”

last photo of my dad and I before his cancer

For years I had often wondered, what would have reminded my father about me. But it was during my father’s battle with lung cancer, I discovered a new expression, “like son, like Father.” Most people grow up with two main role models in their life, their parents. But how often does a child get thrust into the role of role model for a parent?

my dad

My father had reached out to me, a long term cancer survivor, because he had just received news that doctors think he might have lung cancer. Though the news should not have come as a shock for a sixty-year-smoker, a spot on his lung was confirmed by a PET scan. My father was now the fifth family member besides me, to be diagnosed with cancer. And up to this point, I was the only one who had survived.

most recent portrait

The times had changed dramatically even in just over two decades since I had been treated for Hodgkin’s Lymphoma. There were better options available. Better technologies were to diagnose patients. Even the chemotherapy suites were more inviting, like a local coffee shop complete with meals and entertainment.

treatments

As time went on, my father underwent successful surgery to remove the tumor. Under doctor’s recommendations, my father underwent both chemotherapy and radiation therapies for preventative measures. It was during the radiation treatments, something went horribly wrong. Though there was no evidence of his lung cancer present during even the chemotherapy, some cells that had survived the chemo had transformed into an even more aggressive, and rapidly growing cancer.

We were all gathered by his side when the doctors came to discuss the situation with my father. His cancer was now terminal. My father always knew that lung cancer had been a possibility, and that he had cancer, and might die from it. But up until that moment, he believed he would beat it. Refusing to give up hope, although acknowledging the doctor’s prognosis, my dad’s response to the doctor’s final question, broke me down into tears due to the words, I was not prepared to hear.

The doctor and his care team had just explained to my father all the things that they would do to care for him, as the cancer progressed, to keep him comfortable. But my dad’s denial and defiance shined bright when the doctor asked, “What is one thing we can do for you right now?” My father responded, “I want to be a survivor like my son.” He pointed over to me as everyone in the room turned their heads in my direction.

the last photo with my dad

This hit me two ways. I beat my cancer, Hodgkin’s Lymphoma. I had his genes, his personality, his pride, his determination, and perseverance. If anyone had a better chance of defying a cancer death sentence, it was my father. I survived cancer. My dad witnessed it could be done.

just before

But in that same moment, I saw his comment for what I truly think he meant. We never expressed feelings in my family, and up to that point, my father and I could have just been two ships passing in the night. But I took his words that I will always remember, he was telling me that he was proud of me. I had never heard that from my father before that moment.

He would live another three months. And as I sat by his bedside each and every day, we share memories that we remembered, and memories that we did not share in the past. We forgave each other for things we had done and said. And during the night before he passed, as he lapsed into a calm and peaceful state, for the first time in our lives, he heard my voice, not in spoken form, but in music. As I said goodbye to my father, who was a true survivor and just could not recognize it, I sang to him, the words that I could not speak, “Cats In The Cradle.”

his empty chair the day he passed

In the end “Dad”, your boy is just like you. I am glad we had the chance to know that.

Dad, I miss you so much.

Posted in Cancer, Family and Friends, Inspired By...
27 Mar 2015

Navigating The SSDI Process


In my last post, I wrote about the decision I had made a long time ago to work during my cancer treatments, and then also later in my life following emergency heart surgery, and the many issues that have followed it.  I mentioned that it was important to me to have the daily work distractions so that I did not sit at home worrying about the illness battles that I was facing.  Only to my shock, dealing with the petty jealousies of co-workers, and often harsh treatment by management, did I realize that removing myself from that environment, even if only temporary until it was deemed that I was able to return to a normal.  But sick pay would only last so long, and I would not have qualified for unemployment benefits.  And face it, I needed some form of income.

In 1956, an amendment to the Social Security Act of 1934 was made to include benefits for those deemed “disabled”.  The law was fairly plain and very restrictive.  You had to be between 50 and 65 years old, totally disabled, and there would have to be a six month waiting period – the reason being, if you were going to be able to return to work fully, then you were considered temporarily disabled and therefore you would not qualify for benefits.  Your condition had to be terminal, lead to your death, or be of “long and indefinite duration.”

I am not an expert in SSDI (Social Security Disability Insurance).  I have heard the frustrated process by so many other long term cancer survivors who really, I have no idea how or why they were put through the process that they were, because their conditions were so extreme, it should have been a no-brainer.  But last year, I had no choice myself, but to go down the SSDI path.  While no one disputes the number of diagnosis I have as disabilities, how severe many of them are, how many will grow worse over time, or the risks that a fatal event could occur, that does not guarantee any kind of SSDI benefits.  But due to corporate downsizing by my former employer in 2014, I was about to lose my job of over 17 years, of which my employer had accommodated my many physical work restrictions as required by the Americans With Disabilities Act until then, and as available work became less and less, they could no longer accommodate my restrictions, setting me on the path of disability instead.

Let me be clear.  I am not seeking any kind of pity.  But by the same token, I did not ask for all of these awful things to happen to me (see “Pages” for my side effects that I deal with).  And the one time I dared to state to one of my doctors who treat me today, “maybe I deserve all of this shit as my trade off for surviving my cancer.  After all, if I had only lived the five years, I would not have had all this stuff to deal with.”  Yes, I actually said that.  And then he tore my ass apart with a tirade that would have been more appropriate to come from a drill instructor at boot camp.  At that point, I would never allow myself to think I deserved all the medical issues I have today, but rather need to learn to accept them and live with them.

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And so, as the picture above shows, it is fairly vague, but it should not be that hard to determine someone who qualifies for SSDI, yet so many people get denied those benefits. In my 25 years in the cancer world, I have yet to ever meet anyone who has been approved for SSDI on the original application, though I am sure it has had to happen.  But it was my own process which I began last year, which I have now begun to learn just how hard it is to get SSDI.

In summary, I deal with cardiac issues, lung issues, spine, muscular, gastrointestinal, neurological, endocrine, and PTSD related issues.  As many of other long term survivors I know, I anticipated being denied on the application, though a close friend to me, felt I would definitely be one to be approved because of how severe everything is for me.  But I was denied.  I had submitted every medical document I had, letters from all of my doctors testifying to my prognosis and the disabilities themselves.

So the next step was to secure an attorney “pro bono” (they only get paid if I win my appeal), who would have experience in filling in the blanks that caused the denial.  This was usually the step that would successfully overturn the denials for my fellow survivors.  I was asked for any “new” or current evidence, which of course there had not been any in the last two months, which with my health, I was glad.  But when I expected a more thorough review of my case, instead what I got was pure WTF! (what the heck…cleaned up).  My reconsideration was denied on the basis of my original denial – I could communicate, I could handle normal stress, and I could take care of myself.  The stress thing threw me for a loop, and the local Social Security Office was going to see how I handled abnormal stress, which is a huge concern for me.

Eventually I would have a supervisor come out and talk to me, to try to calm me down, to explain the process.  He supports my case and my reasons for getting SSDI, and feels that at some point, I will get approved, but it is not up to him, I have to go through the process.  I am paraphrasing, but here is how I took the explanation.

I was denied on the original application because I did not meet the definition of 100% disabled.  Now by looking at the law that was written in 1956, is said nothing about being 100%, just that it would have to be for a long duration or leading to death.  But something happened in 1959, the law changed after a law suit was filed resulting from a denied application, and the applicant lost.  Before I get to that, it was explained to me by the supervisor, that it is still up to the person reviewing the application, but if it is denied, the person reviewing the application most likely denied me based on the letter of the law as of 1959.  And then the supervisor began to explain to me, the changes in the SSDI Act in 1959.

Dave Baldridge of Kentucky, a coal miner, had his career terminated by his employer due to what his employer even agreed, was a disability related to his working in the coal mines.  But the government disagreed, and Baldridge pursued multiple actions of appeal only to eventually lose.  While many today win their appeals, with better representation and better demonstration of their disabilities and their ability to have gainful employment like they had when they were not disabled, it was the decision of Baldridge’s case that led to nearly everyone being denied SSDI on the first step of the application process.

A dreadful and disgusting example the supervisor gave me of someone who is sure to be denied SSDI?  An Iraq war vet who gets his leg blown off during battle does not meet the 1959 definition of completely disabled.  While no one will argue that he is disabled, the SSA will claim he is not 100% disabled and therefore should be able to find gainful employment.  But what happens when you cannot find that employment?

Alright, so it is disgusting enough how many cases we as human beings feel would be legitimate cases for SSDI actually get turned down because of this outdated law, it was during the first step of the appeal process which baffled me completely.  This was the stage where many of my other fellow survivors dealing with their effects would end up having their appeals won.  And I figured with everything that I had submitted, that I would end up being approved also.  But again, I had been denied.  An here is what had happened.

The supervisor explained to me, that in spite of all the documentation I submitted, and definitely supported my arguments, the person reviewing the application probably never even looked at the documents, because based on the information on the application alone, I did not meet that 1959 definition.  My attorney requested all the information again from all my doctors, which the SSA already had.  But for some reason, the paperwork did not arrive in time, before the reconsideration was ruled, and again, I was denied because no new information had been submitted in time for the consideration.

I blew a major gasket.  THEY HAD ALL THE MEDICAL INFORMATION ALL THE TIME!!  I SUBMITTED ALL THAT PAPERWORK WITH THE ORIGINAL APPLICATION!!  The supervisor understood my frustration at what I definitely considered splitting hairs.  Had the SSA officially received the second set of documentation that they already possessed the original, there was a likelihood that my case would have been dealt with then and there.

And so, just like Baldridge, my case is headed for trial.  And the amazing thing is, that in spite of all the appeals that have been won by going through the lengthy and tedious and costly appeal process, the ruling in 1959 is still what drives this process instead of updating the law.

We pay for this benefit when we work.  That is one of the requirements, you had to have worked for a certain time.  Which I have been employed for over 34 years.  And through no fault of my own, I have multiple disabilities that restrict me from getting gainful employment.  I have been very clear on this blog the amount of physical restrictions I have when it comes to working.  And they will never get better, only gradually get worse.  In some cases, some will need to get bad enough to deal with that the risk of correction outweighs the risks of a fatal medical event.

So after all this, my point is this… to those of you who are going to be dealing with an illness or disability that is severe enough that you expect to not have an income or health benefits, start the process as soon as you can.  You cannot afford to add the stress of appeal after appeal fighting for what you will hopefully be awarded.  The stress you will face will only aggravate your condition and make things worse.  I tried to align myself with doctors and other people who have experience in submitting applications, but it may actually be better to go right through a disability attorney directly who have more experience with this law.

This is an incomplete post.  You’ll have to stay tuned for how this turns out.

Posted in Cancer, Inspired By..., Side Effects, The Heart | Leave a comment
27 Mar 2015

Hiding The Pain… Because We Have To


A current news story about an airline disaster, with speculation of a pilot possibly having had medical issues that could have contributed to the crash of that plane, led me to write this post about something that I have not had to think about for a long time.  This post is not about the disaster itself, but rather choices that many who face challenging illnesses are forced to deal with, in order to survive.

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It happens without warning, you get hurt.  It is called an accident.  You end up with an injury and you seek out proper medical treatment, and you plan to move on, even return back to the work assignment that you were working on.  Only in most employment situations, it is not this simple.  For an injury on the job, we supposedly have protection in place to make sure that we are taken care of.

But when we get injured at home, or develop a serious illness, we are supposed to have federal protection in place, called the Family Medical Leave Act.

The truth is, in neither circumstance are we guaranteed protection with our employer.  Your best bet at being treated like you matter, whether hurt at work or at home, is if you are dealing with a small company, a “mom and pop” company, where you will employer and employee will spend a lot of time with each other, perhaps more than people who have spouses and the time that they spend together.

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More likely than not, if a person is hurt on the job, more than medical care may be given for the injury.  Depending on the severity of the injury, an employer will be obligated to report the injury to OSHA.  This causes major issues to an employer.  An employee risks being scorned by the employer for the inconveniences that will come forth that quite possibly have prevented the injury.  Just Google coal mining accidents in recent years and you will see what efforts are made to cut safety and the “impositions” forced on the employer following the accidents.

It does not stop there.  Even co-workers are eventual participants in the scorning as new policies that change standard operating procedures because of the injured person now “inconvenience” them.  If you have been in the work force long enough, and have seen this happen enough, then you can also guess, that many people would rather “hide” their injury than be harassed often daily.

In 2003, my hand was caught between a 500 pound cage and a doorway, crushing my wrist.  It was an innocent accident, well for the most part.  The hallways were crowded, and instead of pushing the cage, I had to pull it, with my back to the direction I was moving.  And in spite of my slower and careful speed, alternately checking both sides of me, my wrist still got smashed.  So while the conditions were not ideal, it was still an accident.  I did get medical treatment, sort of (put ice on it, take a few Tylenol, and wait a few days).  But it was the paperwork report and the treatment by certain co-workers that proved very unfortunate.

I was not losing time from work, so my employer did not have to worry about OSHA.  The problem was that I was working temporarily in another building for the day.  And that building was on an impressive streak, and following my injury, I can almost assume how they got to that point, being injury-free for an entire year.  Were they to make that point, the entire staff (only in that building I should add) would not only be recognized for their effort, but be rewarded with a very nice company coat.  My injury, just weeks before the year mark would approach, ruined that.  Immediately, I had co-workers just telling me to “shut up”, “just put up with the injury”, and “change my story” because I “was fucking it up for everyone!”  I was injured.  I needed surgery to correct the injury, and all anyone was worried about, was their jackets.

The solution was quite comical, and it did not eliminate the harassment that I was receiving, but it did get those employees their recognition and their coats.  Because I was only temporary in their building, the report would be written that the injury had taken place in my regular building, a blatant act of fraud on the report.  But for those who watched me go through all this abuse learned painfully what was at stake for taking care of themselves, that it would be better to hide the injury than face the scorn.

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But what happens if you are facing a serious illness, injury, or accident?  What if you are dealing with cancer, cardiac issues, burns from a fire, an auto accident?  Surely there would have to be compassion.  After all, who would want to be in the shoes of anyone in those circumstances?

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I had not even begun my treatments for Hodgkin’s Lymphoma before the first co-worker lobbed accusations of me being treated “special.”  Now keep in mind, I made a decision that other than the diagnostic surgeries, I was not going to miss any other time from work, other than to go to my treatments.  My employer was on my side as he had gone to extraordinary lengths to improve our health plan to provide me the best medical options.  The benefit would go to everyone, because now everyone had that coverage.  I made the decision back then, that it was important for me to be at work, so that my mind would be distracted from the daily struggles of thinking about cancer every day.  I missed a half an hour of work in the morning for my radiation treatments (for 30 days), and two Fridays a month, I lost 2 hours at the end of the day so that I could get my chemo (for 8 months).  I missed no other time because I spent the weekend getting sick, and recovered well enough on Monday to return to work.

Somehow, my co-workers felt that the time that I was being granted for my treatments, was perceived as being “given favors.”  I would be willing to bet that not one of my co-workers who were harassing me would have been willing to trade places with me.  But I made a decision that I thought would be right for me, but it was all wrong for everyone else, and that would eventually take a toll on me emotionally.  But I could not hide what I was going through.  My body was showing the effects of the treatments.

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In 2008, doctors would discover what the extreme cancer treatments had done to my body over the years.  This would result in doctors ordering medical restrictions that would not only become permanent, but would increase for me as time goes on as my issues progress, but might also increase as complications arise.  Unlike the obvious balding from chemo, my issues are hidden as well as I can do.  But there were days when I could not hide my limitations, and just like before, issues developed between myself and my employer, and myself and my co-workers.  My employer would often find it difficult to find work for me to do under the requirements of the FMLA, but better to have me reading papers at work, than to pay me sitting at home collecting sick pay or disability.  But to many of my co-workers, strong resentment built.  Not only was there resentment for the special assignments I was given that were within my restrictions, so that the others were never given “special work”, only the normal daily grind assignments, but I was being paid the same as them, and for doing what they perceived as easier work.  Again, I do not know any of them who would have traded places with me to undergo emergency heart bypass… to have restrictive lung disease… to have a precancerous condition called Barrett’s Esophagus… to having radiation fibrosis syndrome… and more.  But because those things are more easily hidden, unlike chemo conditions, most assume that the issues are either not real, or at least not as bad.  Again, walk in my shoes.

Were I to do it all over again, and I said this prior to my heart surgery that I would not let it happen again, and I did, just to prove to myself how “strong” I was, I would have gone right for Social Security Disability, which cancer is definitely one of the diagnosis covered as is all of the other issues I deal with today.  But weighing the horrible treatment I got from especially my co-workers, I would have rather sat at home, risking feeling sorry for myself.  Because at least I knew my situation was real, and I knew what I could do and could not do.

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For 26 years, I let what others thought of me, dictate how I treated myself, so as not to upset them, no matter the physical cost to my physical and mental well-being.  Just keep pushing… PUSH HARDER…  HARDER!!!

I have now spent over half of my life, living with cancer, and its late side effects.  Over all, I am a very positive person and appreciate life and what it has to offer.  But I stopped letting others tell me how I feel and that things were not “so bad”.  Never again.

Employers need to do more to protect those who face adversities with their health.  It is called being a human being.  It is being compassionate.  A work atmosphere that emphasizes care instead of pause and fear will be more productive and profitable, if employees did not feel that they had to hide what they were going through.

But until those days come, I would offer that the moment you are diagnosed with a serious illness or facing some other health trauma or crisis, file for SSDI immediately.  You will be better off filing right away with the tedious and time consuming process, but you will also be better off emotionally not having to deal with the selfishness of others who expect more out of you, than what you know you are capable of.  Just because they do not see it.

Posted in Bullying, Cancer, Education, Inspired By..., Side Effects, The Heart | Leave a comment

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