Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Bullying”

Should I Work?


Continuing on with my posts in recognition of Lymphoma month, is a question that I am asked regularly, not just by Hodgkin’s patients, but by patients of other cancers as well.  “I have cancer.  Should I work?”

This is not an easy question to answer because it really is about choice.  But were I to be given the chance again, I would not work.  I am third generation blue collar worker.  In other words, unless you were on your death bed, you showed up for work.  And even then, I might still try to get some work while lying there.  Being recommended to go on “disability” was not something I was even going to entertain the thought of.  Besides that, I had a couple other thoughts.  I was not going to let cancer dictate any more of my schedule and routine than it already had.  I was going to continue on, with the exception of when I had to go for my treatments.  The other, and just as important to mental health, I did not want to just sit around, with nothing to do, except think about me going through cancer.  I needed to keep myself busy.

And if it had been that simple, I would have made the right choice.  After all, I missed only limited time, two hours for two Fridays each month for my injections, and an hour in the morning for thirty mornings for my radiation treatments.  My employer was definitely thrilled that I was not out for the entire time.  After all, I was tougher than cancer.

But as I mentioned, cancer is not just physical, it is also mental.  And unless you have the misfortune of going through a very bad illness such as cancer, I do not think a person can truly grasp what happens to our bodies.  I do not fault anyone for that, but I do have to lay blame for their behavior that results from their ignorance.  That can be controlled, but it is not.  Instead, as if I was not dealing with enough with the cancer itself, all of a sudden I had become a burden to my co-workers.

Now you may be saying, “how could you have become a burden?”  Simple, most employers have attendance rules and other policies.  In spite of me being a private person, my co-workers seemed to have possessed knowledge that I did not.  They assumed that I was getting special favors because of the time I was missing (the minimal time that it was), and this was not fair.  It was not their concern, especially that I was not getting paid for that time, but my absence was a huge inconvenience to them.  Twenty five years later, I still have not figured out why.

But the stress that was created by their scorned looks, and clear bad attitudes towards me, only helped to increase, rather decrease my immunity.  Stress is a body’s reaction to the environment around, and it has profound effects on your immune system.  And do you know what else has an effect on your immune system?  That is right, chemotherapy drugs.  And what happens when your immune system is down, you are more susceptible to other ailments.  It is easier to come down with other ailments that others at work do not have the consideration to keep at home, like Strep Throat, sinus infections, Flu, and many more.  To a cancer patient, this can be quite serious.

Of course, I was bull-headed and just pushed my way through this.  And when my treatments were done, and my attendance record was still in tact, I only used that as motivation to go forward in my life as a hard working, dedicated employee.  In no time, I would increase my working days and hours.  Into my second decade of survival, I would actually start working seven days a week, and operated a couple of businesses that I started up.  I would push myself as hard as I could, and my new employers would expect nothing less from me.  After all, this is who I was.

But in 2008, my world came crashing down in a big way.  A major complication from my treatments had created a life-threatening situation and I needed life saving heart surgery.  You can read the page “CABG – Not Just A Green Leafy Vegetable” for the whole story.  But what happened after the surgery, set me down a path that I would not realize would cause even more harm, until just this past weekend.

Following my heart surgery, obviously I was going to miss a lot of time from work for that, by no choice, I had been told six months.  This was due to the radiation therapy posing potential issues with the healing of my breast bone.  But my employer was going to only grant me three months.  But what my co-workers was even more horrendous.  One of the very first things following my surgery, the doctors wanted me to walk.  I had left the hospital after a week, and on the very first day I went for a walk, just up to my corner and back was all I was up to.  But a co-worker had seen me making this trek, and when he arrived to work, told other co-workers that he had seen me walking and I looked great and could not understand why I needed to be out any further.  The animosity by my co-workers towards me only grew worse.

As time went on, more symptoms started appearing with physical issues affecting my shoulder, neck, back, and hips.  This caused more limitations, and more grief from my co-workers.  Eventually it got further into my head, that I had to be the problem.  Issues arose with my supervisors trying to accommodate me and my working restrictions, as required by the American With Disabilities Act, and yes, that meant more resentment.  But these accomodations allowed me to continue to work, and work the many hours that I had always done.

This just resulted in more issues, as my body continued to struggle keeping up with the load I placed on it.  Eventually my immune system would run down again, and I got hit with two cases of life-threatening pneumonia, one I was septic, the other was double pneumonia.  And six months later, another heart episode.

Earlier this year, something finally happened that my body or my will had no control over.  Just a continuation of the struggling economy, and what I would describe as a big company simply not greedy enough, downsized my department.  Soon my hours were reduced, and eventually, the assignment that I have had for all these years with my restrictions was taken away from me, eliminated.  This put me into a general labor pool which I was no longer able to do.

I have not been at work since April.  And you know what?  My body has had time to rest, something I have denied it for a long time.  But yesterday, as I was on a friend’s boat, as we sailed out to a popular island, I sat on the bow of the boat, looking at all the wonderful surroundings, feeling totally relaxed, and it had finally hit me.  If it is going to come down to me or everyone else and what they expect of me, what is going to do more harm?  If I do not care about myself, how can I expect anyone else to care about me?

Again, if a person is fortunate enough not to have to deal with a cancer diagnosis, or anything else as severe, you will never get this.  Because of others, even those close to me, I allowed myself to push my body beyond what it was capable.  A cancer patient’s body has been put through enough with toxic chemicals and radiation, and probably life altering surgeries, than to be expected to do any more.  This does not make you weak.  For the first time in my life, I think I am finally able to recognize and accept the word “disabled”.  No, not in the sense that I need to be taken care of or have become unable to do things on my own, but my body is not just the same.  I have exposed myself to too many risks by wearing my body down, and being near those who have just not been considerate to have stayed away from me exposing me to all kinds of illnesses.

So again, should you work while you are going through your cancer experience or after?  It still is a personal decision, and one not to take lightly.  But if it were up to me, I would definitely have done different and taken better care of myself.  I will no longer allow anyone expect more of me, than what I know I can do myself.

Back To Paul’s Heart


I cannot believe it has been since June that I have written anything here. But then again, yes I can. I have just spent a glorious Summer with my two daughters. It was time needed, and time well spent.

My daughters are back home now with their mother for the school year, with more visits from me, and a nice Christmas break from them planned.

So, I have been starting more writing prompts and topics all the while, and am now ready to start blogging again. Thank you for understanding.

Paul

Prove It


I am known to be a strong health advocate, which is not to be confused with being someone who has been able to maintain good health, a healthy diet, or even a healthy lifestyle. I have lived most of my life with a “do as I say, not as I do” approach, until recently that is. Over the last two decades plus, I have spent my time fighting for myself, and others to get the proper health care and attention that is needed. All too often, we are all faced with dealing with a diagnosis that is not easy to be discovered.

For some, a broken bone appears obvious even to a six-year-old on an x-ray. An intestinal ailment such as diarrhea… no mistaking that one either. But we are a species of many illnesses that are all too often difficult, if not possible to diagnose. Even my Hodgkin’s Lymphoma was originally misdiagnosed as the “common cold” because of how rare a cancer lymphoma is, and how untrained doctors were back in the 1980’s to recognize it.

So it is not bad enough that doctors and other medical personal have a difficult time diagnosing what ails us, what happens to the human being who works for a large corporation who has their own health services department? While I do not begrudge anyone who needs a job, I obviously will not give anyone the level of credit to care for me, that is working for a corporation because I feel there is a blatant conflict of interest. And I apologize to those who may be offended by my comments if you are one of the few that probably exist that will admit that you just might lack the qualifications to deal with someone with a complicated health history.

I need to preface my next paragraph with this example. An employee gets hurt on the job. In most cases, if the injury is not obvious, the health representative of the company, and all the pen pushers that read and prepare the reports, will do all that is possible to make sure the injury is not recorded as compensable… “worker’s compensation.” Many employers are very comfortable with going the appeals route through court in hopes that out of some number of denials, regardless that the injury is legit or not, maybe only one or two will appeal the denial. Employers are willing to take that risk because face it. If you have 10 work injuries and the company’s insurance pays for all 10, the company’s insurance loses. But if you deny all 10, and only 1 appeals, even if the lone appeal wins, the company will still see the lack of appeal by the other 9 as a win. I have painted the mindset of a possible employer situation.

Now I go one step further. Let us say that an employer is a bit more aggressive in the punitive area when it comes to dealing with absences and disabilities. Again, most employees do not walk around with lawyers in their back pockets to pull out and reference as needed, so often they enter a health suite of their employer without any representation. But the truth is, beyond the “nurse” or health tech that is examining you, are a bunch of pen-pushing zealots whose job it is to decrease truancy in the work place. And one way to do that, is to crack down on employees who have extreme health issues and rely on a law that is meant to protect people dealing with long term or life long issues, the Family Medical Leave Act.

If you are lucky, you will go through your life calling out “sick” once or twice a year for a day or two. But for other who have chronic or serious issues, absences can be lengthy and complicated. And with FMLA, employees who have these issues are protected from their employers cracking down on them for health that cannot be controlled. Just as taxes and traffic tickets, employers look for ways to get around this law, because face it, there is a company to run.

So a “disability management” department representative sends out paperwork to be filled out by the health professional of the employee. Which makes sense. If the employee is seriously ill or the condition is difficult, the employee will see their doctor. But it is the next step that I have the problem with. Upon the return of the form to the company representative, the representative is not happy with the information that has been provided and wants more. Failure to comply will result in the denial of disability work benefits, so the employer representative will insist on a full HIPPA release (you know, that other law that is meant to protect your health privacy) so that the employer representative is free to “speak” to the employee’s physician, or rather interrogate the real doctor.

Allow me to illustrate the nonsense. Radiation damage over 24 years ago caused damage to my heart requiring open heart surgery. Not many people reading this will have any idea of the involvement or recovery time involved. But guess what? The doctors who operated on me, as well as the long term specialist I see at Memorial Sloan Kettering Cancer Center do. And so, it was decided that I was to allow six months for my breast bone to heal (it took longer because of the radiation damage). My cardiologist determined that it was not necessary to see me for another follow up visit for three months following my initial post-surgery follow up.

Not good enough demanded the employer representative. They wanted me seen every month. That is right. The cardiologist and surgeon, who are most familiar with my open heart surgery have no idea how to follow my care up, but the employer rep does. If I did not comply, I faced possible punitive actions such as denial of short term disability benefits, rejection of FMLA coverage, and possible termination.

There have been several more times that I have missed lengthy period of time at work because of emergency health issues, all tied directly to my late term side effects. And each time as I had to deal with them, I had to deal with an employer representative who questioned the relationship between my absence and the late effects, “how do you know that your late effects caused this particular absence? What tests were done to confirm this relationship?” It is ridiculous to continuously question me on this. I want to work. I do everything I can to get back to work as soon as possible. But seeing how the job itself put my body at risk, I could have actually made an argument for worker’s compensation as the work itself caused my flare-ups, but I really do not want to fight about it. It is exhausting. I know my body well enough that when it has had enough, I have no choice but to listen to it. I have experts, EXPERTS, not corporate shills, who know the permanent damage caused to my neck, shoulders, back, immune system, circulatory system, and so on.

Bottom line, I am a good and reliable worker. And I have rights. I will wave the flag of the American With Disabilities Act as well as the Family Medical Leave Act for the rest of my life. The sad thing is the amount of money a company is willing to fight against worker’s rights, might just actually cost more than the absence itself.

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