Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

If I Had Only Known…


Growing up, I had this uncle with a very warped sense of humor. Back in the 60’s and 70’s no doubt we were all exposed to the “they will do it just once” and our parents let us find things out on our own, such as touching the burner on a stove when it was hot. The thought being that the really smart ones would learn from that scorching mistake in judgement.

Around eight years of age, I pondered what would happen if I held on to the prongs of an electrical cord and plugged it into the wall. My uncle told me he did not know and I should try it if I was curious. After all, I did know that the cord was connected to a lamp, so I knew it could turn the lamp on. And then of course there was Uncle Fester on the TV who could light up a bulb by just sticking it in his mouth.

Fortunately, there was nothing in the path of my tragectory as I was thrown backwards from the jolt of 110 volts going through my hand. I hated that uncle ever since. He could have just said “no” and in theory I would have listened.

Then why is it, that as adults, we have such a hard time, knowing better with our judgements if we are to guide our younger family members. A patient recently diagnosed with lung cancer seemed genuinely shocked to find out, when asking the doctor what could have caused the lung cancer, that the answer was smoking. The patient wanted to present any other kind of explaination. Major denial.

My generation had the subject “Health” in school. And during the elementary years, a good portion of the class was committed to “smoking”. Looking back, it was really a harsh class. As part of the demonstration, an actual, preserved lung was displayed, that was riddled with emphasema. It was awful. Compared to the healthy lung which was not black and hardened, clearly the message was to get to the children, and then the hope was that the children would convince their family members to quit. Emphasema, COPD, and lung cancer… three major reasons to never start smoking, or to quit if you can.

And that is the tricky part, if you can. Cigarettes are one of the most addicting habits one can ever be trapped with, physically addicting and the cigarette companies know that. So, when someone has been smoking for decades, is most likely going to be unable to quit, or restart. And no matter who brings the message home, that person is practically powerless to do anything about it.

I did come home from elementary school one year, following the anti-smoking campaign lesson. And I begged both my mother and father to quit, and why. I got several reasons why they could not, one of which was, “nothing will happen to me”. And that is what happens to people when they make that choice to start smoking. They do not believe that they will be the ones to get cancer.

Funny… I thought the same thing too. But no one knows what caused my Hodgkin’s Lymphoma. With lung cancer, it is usually an obvious answer.

It is sad really, to hear these words from someone who has just been diagnosed with lung cancer, “If I had only known…” I guarantee both my parents knew, but just as I held onto the prongs of the cord, I did not listen.

It is a horrible thing to watch anyone die. But even worse when it is from something that could have been prevented. And the sad thing is, there are those in my life, that my children will see smoking, and feel sorrow for them, because their grandfather is battling lung cancer from smoking. And that is what they will remember about him, and worry about anyone else that is smoking.

Smoking is not just a bad habit, it is a deadly habit. If you do not smoke, do not start. If you do smoke, quit now.

And here are a few other things I can let you know now, you can prevent later:
Sun burns skin – wear sunblock
Fast Food burgers – not good for your cholesterol
Clean hands – less germs spread
Reality TV… not very real

Now you know.

Two Good Items To Note


Two items of great news to note. The first, to follow up the story “Hot Potato”, it is with great joy to tell you that the couple has been reunited, as of yesterday. To keep this post positive, the details of the admission will be written in another post. But I want to tell you the joy witnessed when the spouse who was already at the facility saw the other spouse being wheeled through the hallways, provided the most satisfaction I have ever felt as a health advocate. While the prognosis is not favorable, at least one wish had come true. I have been told that this situation is very similar to the movie “The Notebook”. I guess I need to see it.

Second, all months long I have been harping about the importance of preventive screening for colon cancer, among other cancers. Last week, I underwent three screenings, all part of my follow up care for Hodgkin’s Lymphoma. I still have more to go for other body systems, but I can now cross these three off for a little while.

According to a dermatologist I saw, he was quite amazed that I did not have basal cancer cells given the amount of radiation I had been exposed to. But cross that off… no skin cancer. Another test I underwent was an endoscopy, a camera put down my esophagus to check for many things, but to follow up on a pre-cancerous condition I have from radiation therapy, Barrett’s Esophagus among some others. The test showed that everything remains stable. Cross that one off.

So, March is Colon/Rectal Cancer Month, so the final test I had done was a colonoscopy. Again, it is a camera going where cameras do not usually go. And while they are there, if polyps are found, they are removed and biopsied. If pathology confirms they are not cancerous, then by having removed them, the polyps have been prevented from turning cancerous. And if they are cancerous, hopefully it allows enough time to treat.

Yes, for the second time, I have had polyps removed. And for the second time, they were not cancerous. But had I been like so many who do not get this simple screening for silly fears and ignorance, given my health history, I could be writing a different post.

That is what makes a colonoscopy so valuable and important. How does the expression go… “an ounce of prevention.”?

Hot Potato – Health Care At Its Lowest


We all remember the game of Hot Potato that we played in elementary school. Everyone passes some sort of object around in a circle or back and forth to a partner until the teacher yelled “stop.” The goal of course, to not get stuck with the “hot potato”. Now of course, the game would have been a lot more interesting had the potato been real, and hot, like fresh out of the oven. No one would even want to touch that potato.

My post today is not about a hot potato right out of the oven, and it is clearly not a game. But it is a situationor a game that individuals do not want to get stuck with holding. And just as someone passing a hot real baked potato, someone is going to get burned.

First, the participants: a hospital, two nursing homes, an insurance policy, and a man and wife who have been together for over forty five years. If you have followed my posts, you know I am not an advocate normally for the first three entities. Today will be no exception. But I know it is going to be odd, as I am in the middle of my second divorce, to hear me defend and support a long term relationship and marriage as I am about to tell you about. For privacy, the names are not being used to protect their privacy, as well as their case as it is being fought, and I have joined.

The situation is this, an elderly couple, having experienced so much tragedy in their lives, made the most of what they had with each other. A tragic accident left one spouse to care for the other over two decades ago, and at no time, did the spouse ever waver from caring for the loved one. But then, the health of the healthy spouse suffered, quite seriously and became no longer able to care for the other spouse. This paragraph by itself is sad enough. Now it gets worse. Because of governmental bullshit, like spoiled brats with their arms folded in the sandbox, are simply willing to stand by, and hold their positions. Caught in the middle… the man and his wife.

So here is how the “potato” is getting tossed back and forth. The nursing facility that is preferred #1, that both spouses could live out the dying spouse’s days, will not accept the current supplemental medicare coverage purchased by the spouse. Facility #2 will accept that coverage, but not the spouse who has different needs. However, if the spouse drops the supplemental coverage, or it expires, then facility #1 can take the spouse. Unfortunately, there is an enrollment period requirement, which had past two months ago. In other words, this dying spouse must wait until the next enrollment period comes around to be with the other spouse. I do not believe that there is that time.

As I am prone to do, I am an advocate. I shake trees and rattle windows. I immediately began to contact government officials, local and state to see what could be done to help this couple. And lo and behold, an exception had been found for the enrollment period requirement for such a situation. It is not perfect, but it is a start. And as the situation was discussed with facility #1 that it looked hopeful to reunite the couple of forty-five years, we were informed that the spouse could not be accepted after all, because of a device that had been implanted for his terminal care.

So now the rollercoaster of health hell continues around the track. Insurance will pay for a visiting nurse to maintain this device in the spouse’s personal home, but not in a nursing facility. Nor will the insurance pay for the facility to perform the maintainance. What to do? That is right, begin the process to remove the device, which prevented the spouse from returning frequently (every two weeks) to the hospital to have the work done. But by removing the device, this would reunite the couple.

I continue up the corporate chain with this, working with local and state officials, and working my way up to Federal, trying to find reason why they “WON’T” make one freaking exception for someone who wants only one thing that is left in life, to be with their spouse one more time. I am not sure how much time is left, but I am asking for help, from anyone reading this, share this story on Facebook, or any media. This couple is not the only one in this situation, yet it is the very definition of what is wrong with our health care coverage.

My marriages may not have worked out, but this couple’s marriage did. And just as in the movie “The Notebook,” they deserve to be together one final time.

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