Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “June, 2014”

Morris The Cat Meets Mikey

My eating habits often were compared to two television commercial icons decades ago because, well, the comparisons of my picky eating habits just could not be denied. Morris the Cat was an orange tabby who only ate “Nine Lives” cat food, turning his nose up at any other brand. While I have never tried cat food, I have had to smell it once the can was opened, and they all smelled the same, and looked just as awful. But somehow we were to believe that this housecat knew the difference between one brand and another. According to the commercial, the cat could do just that. Then there was the little kid in the high chair at the breakfast table with his siblings. His name was Mikey, and he did not like anything. Mom obviously did not buy sugar-loaded cereal and the siblings had the bright idea that the best way to deal with the situation, and not eat the cereal their mother bought for them was to “give it Mikey”. Which to their surprise, “he liked it, Mikey liked it”, Life cereal.

Yes, two finicky icons. Those two had nothing on me. My diet was simple… meat and potatoes. I would occasionally sneak in some corn and carrots, apples, bananas, oranges, and watermelon. No seafood. I was easy to cook for. Meat and potatoes. I did not even have to try the food to know that I did not like it. If it was green, I was not even going to spell the name of the food being served to me. Seafood? I did not “see food” go onto my plate if it did not walk on dry land.

This presented a unique challenge because having two small children, I knew that my diet was not a healthy one, and I definitely did not want my children to learn to eat like I did. And that is just it, my food lifestyle was a learned habit. The problem is, it was a forty year education of “no, I don’t want that.” I am fortunate that both daughters ate well right from the beginning. If there was any food that garnered a response “I don’t want that” or “I don’t like that” especially not having tried that, it was met with a “please take a ‘no thank you’ bite.” With that, my oldest daughter eats everything green except for the lawn, but I suspect given the opportunity, and a good recipe, she would find a way. With my youngest daughter, she alone could be responsible for the extinction of the lobster.

So what happens when my daughters diet clashes with my diet especially when my daughters know my health issues and know that I should be eating better? Guilt, lots of guilt and pressure to eat what they place on my plate. The funny thing is, I did whatever I could to change the flavor and the consistency of the food I would rather have turned my nose up. Which usually meant that I smothered everything in ketchup. Even garlic could not alter the food enough for me to eat it. But ketchup? Yep, did the trick. The only thing was, I eventually began to hate ketchup because I was eating so much of it. So it was easier for me to go back to my finicky ways.

Strangely, not until I filed for my divorce, I made another attempt to eat right, eat smart, eat healthy. I have no intention of ever going vegetarian (and I am by no means ridiculing anyone who chooses to eat vegetarian) I love meat way too much. But I am eating smarter. I am working with a dietician who is trying to undo 40 years of bad habits as well as to educate me on “why” I need to eat better, and how.

In between my visits, I would actually take pictures of my plates with all the different colors and email them to her. She could not believe with her own eyes and actually wanted video of me eating the food. I gave her one video, but from there on, she just gave me encouragement. And because I was getting a lot of emotional support from friends in the form of meals, the peer pressure I felt from friends trying to do something nice, I stopped turning my nose up at foods. I am now eating greens, other fruits, and even seafood. I still have the occasional red meat. But I do feel a lot better about how I am eating. And when my daughters visit me, I know that they will be pleased that they can sit down with me for a meal, and not see me drown my food in ketchup.

Of course, this only happens when there are eyes on me. I need to get to the next level to actually order or buy the food when I am on my own. One step at a time.

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.

Understanding The Long Term Cancer Survivor

These are facts. A diagnosis of cancer is no longer an automatic death sentence in most cases. Cancer patients who reach remission, often live longer than five years (a survivor mark established by medicine and hoped for by patients). Treatments used long ago were never fully researched for long term side effects for patients who lived longer than those five years. Once these late effects were discovered, medicine still did not educate doctors, current and future, about late effects leaving millions of cancer survivors to struggle to receive care for mysterious ailments that did not coincide with their age or circumstance.

This is opinion. Once a cancer survivor is recognized with having to deal with late side effects, it is often difficult to convince family members that the effects are real, and irreversible. Employers often look at survivors who complain about their discomforts as simply trying to get out of work. Worse yet, those employers with their own disability management department often argue that an absence, due to those late effects cannot possibly be proven that the two are related in an attempt to reprimand the employee.

These are just a few of the circumstances that I have come across where people just do not get, what it means to be a cancer survivor and have to deal with the treatment side effects that cured us, now hinder, cripple, or kill us. But just when I thought I had dealt with all areas of my life with this issue, another hit came from another direction.

Earlier this week, I had a hearing pertaining to my divorce in regards to support. I am not going into the details of the hearing other than to express yet another example of how society is not yet ready or able to recognize those of us who have been fortunate to beat cancer, and live a long productive life.

During the hearing, the Master (taking the role of the judge for this hearing) was questioning my current absence from work and instead turned it around into why I was leaving my job. There are several circumstances with this issue. For the last many years, I have had several restrictions placed to protect my health in the workplace. And with the backing of the American With Disabilities Act, my employer not only had to, but was willing to meet and honor those restrictions because there was a job assignment that I was able to complete on a daily basis. And I have been doing that job for many years without any issue.

This year however, as many corporations are known to do, my employer decided to close the building that I work in. As this process takes place, work inside my building has dwindled leading to the elimination of the job I have been doing. Instead now, I am placed into a general work assignment pool, where my restrictions now affect my position, leaving me basically unable to do more than 90% of the work. This is not my choice and I had to convince the jurist of this, along with the fact that my medical issues of survival are not only very real, but also severe in nature, and not reversible. My attorney then handed the jurist about ten pages of my medical history as evidence of my health issues. I am not sure how well that will go since many medical practitioners do not understand the health of a long term cancer survivor, how will a jurist? But that is exactly who will decide my fate.

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