Paul's Heart

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.

What Color Is A Purple Roof?

“Oh, come on now. What color is a purple roof?” This was a stupid question that my chemistry teacher in high school would ask us when we were asked a question that he felt the answer was going to be that obvious. I would often look around the class after watching victim after victim of this clear insult to see who would be the student to put the other out of his misery.

I guess looking back, and knowing a little more about chemistry as an adult than I did as a teenager, perhaps the answers might have been that obvious. Or were they?

As I walked into the hospital to see my father, who is battling lung cancer after smoking cigarettes for over fifty years, a gentleman stopped me just before I was about to enter the building. “Yo man, got a cigarette I can have?” I generally do not ridicule someone who makes a decision on a vice, unfortunately gets addicted to it, and will someday most likely face the scenario that my father is, but today it happened. I had already walked by him when he asked me the question. I am really curious what the expression was on my face. In the last month alone I have been at the hospital with my father well over 90% of the time. So let us just say that after all that time, I am having sleep issues, really tired of hospital food, and continue to battle things that I have been exposed to that I should not.

I turned around, much like one of the monstrous pro wrestlers who has had his ass kicked enough in the ring that all of a sudden as if a miracle, he has the intestinal fortitude, turns around and glares at his opponent in sheer defiance before he unloads his wrath resulting in victory. I kind of did that. I turned around, gave the man a glare as if I were a pro-wrestler, and then… said, “no”. And I walked away from him.

It is not my concern or my responsibility to be a public service announcement for people to realize the dangers of smoking. My father knows this first hand, and yet, many close to me, and are aware of my father’s situation, and either start to smoke, continue to smoke, or pick the habit back up. Even being diagnosed with lung cancer, having half of his lung removed, going through chemo and radiation, having fluid build up in his chest, was not enough to convince him to kick the habit. Come on now, what color is a purple roof?

The second part of my post, also deals with the same obvious question about the purple roof. When we go for our treatments, we get blood work done to check our levels to see if we are able to go through with our treatments or if need be, to modify them. Just the blood work. But with the help of “Paul’s Heart” and its many readers, I want to start a movement. And it is just this obvious.

The good thing about treatments, in most cases, it kills cancer cells. The bad thing about treatments, they kill good cells too. But they can also affect body systems. For instance, two of the drugs that I was given affected major body parts for me. One drug affected my heart, the other affected my lungs. Now just as a blood test was done prior to each treatment, and knowing that two drugs had the possibility of affecting my heart and lungs, guess how many times either heart or lungs were checked during eight months of chemo? Or better yet, radiation therapy, especially at the large doses I was given, the extreme likelihood of damage to the heart, how many times during my 30 treatments should my heart have been checked? Come on now, what color is a purple roof?

I do not care if a treatment only states a 5% possibility to have a side effect. If you know this is a chance, then you need to be checking for it, before the damage is too bad. If damage has begun, if a simple echocardiogram could be done after a certain number of treatments, instead of waiting until three months after treatment ends (as many protocols state), the opportunity to switch treatment plans to something less toxic than the body is able to deal with is still a possibility.

There are many families out in the world who not only wish they had this information before it was too late, but also wish that every doctor had the protocol of following up for side effect damage during treatments instead of months after treatment has ended, and the severe damage could be done. Here lies my challenge to you, my readers, and my mission. If you are reading this, and you know of someone who is getting a cancer treatment, learn the potential side effects. Then become their advocate and insist of the doctors following up that particular body part or system at a minimum one time during the treatment process (if only once, half way through would be a good beginning). Lives will be saved by this effort because I know the color of a purple roof is purple.