Paul's Heart

Life As A Dad, And A Survivor

Tween Time


Happy Birthday to my oldest daughter today. She is very proud to announce to me that she is just two years away from being a teenager. The funny thing is, she says it without knowing why. So Madison is now heading into the second half of her childhood now, or as it is called, being a “tweenager.” This is the period of time that a lot of changes have already taken place in her life, but more importantly, she is becoming more aware of her surroundings, and the things that are out in the world for her to experience.

It is easy to remember what birthdays I looked forward to. Turning sixteen was a major one for most all of us because it was the gateway to adulthood and independence, getting a driver’s license. I have put the kibosh on that theory with Madison, because when we discussed when she would be able to drive, I negotiated a sweet deal, as close to never as I could get, thirty eight years of age.

Another milestone was turning twenty one. While the responsible goal was to have turned the age to be able to make your opinion count by voting, many of us saw twenty one as an opportunity to experience why all the other adults we watched were always so happy, consuming alcohol. Well, I know Madison has not expressed her interest in politics just yet. And I know that Madison does not really understand the concept of drinking alcohol, as she never really witnessed either of her parents drink other than the occasional glass with a meal.

Hmmmm… so what could Madison be all excited about being two years away from being a teenager? I tried to remember what it was like for me and the things that I did back then. The bad thing for Madison is that I am going to remember from the male perspective. I played a lot of baseball and football, rode my bike, did my homework, hey… wait a minute. At around that age, I was crossing the vortex that allowed me to recognize that girls were a good thing.

Television had shows that displayed boyfriend and girlfriend relationships, and that it was cool to have an interest in someone. Hey… you do not think… wait a minute… she is not… could… no. She cannot be excited about turning eleven because of…?

Yes, the reality of fatherhood and a little girl who is excited about a particular birthday. For many years, she has playfully talked about her “boy friends”. One in particular she has laid claim to as her husband for the last six years or so. She is noticing boys. But fortunately one thing in my favor is that Madison has a little sister who is willing to blow the whistle on any ill-fated attempts to disrespect my daughter.

In all seriousness, this is a difficult year for Madison and I. As it is another special day that we are doing differently, because of the pending divorce. One new tradition that I have started with her, and will do the same with my younger daughter, is picking a birthday meal. In the past, because extended family were invited, Madison never got to choose her birthday dinner. And ultimately, it is her birthday. Not everyone was crazy about tuna noodle casserole when I was a kid, but it was my birthday, and my dinner. And so, for our new birthday tradition, Madison chose Taco Bell.

It does not take a lot to make Madison happy as her father. She wants attention. She wants to do the things that she wants to do. I could not be more proud of her (I am equally proud of both of my daughters). Happy Birthday my “Ting Ting”. Don’t rush the teenage years on me.

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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