Paul's Heart

Life As A Dad, And A Survivor

From A To Z (Anxiety To Zen) defines “anxiety” as of fear, dread, or uneasiness. It is a safe bet, that anyone reading “Paul’s Heart” has experienced anxiety at least once in their life, if not more. My hope is that any level of anxiety has been limited to small concerns in life, perhaps a trip to the dentist, taking a final exam, or even going on a first date. Others however, have faced much more extreme degrees of anxiety due to an illness, a job situation, some sort of legal case, or some other sort of emergency. How a person handles anxiety, can often have an impact on the result.

I will not claim to never have suffered from anxiety issues, quite the contrary, I have even hit the level of full blown anxiety attacks, which is an entirely different situation as it is something triggered by an occurrence as opposed to the anxiety caused by anticipation.

To my recollection, I have always handled the anxiety from a pending situation, with a thoughtful and calm direction. I cannot explain why or how I even got to be that way. I do not recall anyone setting that example or “talking me down” from being stressed out. But my earliest memory of dealing with a stressful enough event, occurred back in 1986, at work. I was working in retail, and my manager was getting ready to open our store in the mall. It was a Saturday, two weeks before Christmas. Now, if you have never worked in a mall store, there is a chain gate that secures each store. Most, will raise and lower with the simple push of a button.

Well, that morning, the gate would not open. As “Jimmy” began to panic, because this was something neither of us had experienced before, I told him that there had to be some sort of other method to raise the gate to open for business. “Jimmy” had already made it up in his mind that he was going to face some sort of reprimand, that sales were going to be lost, he would be doomed because of this malfunction.

And that is when I recognized my anxiety mantra. “Jimmy, you can’t change anything by worrying. You can certainly make it worse though.” And with that, we located a chain and pully system, that we began to pull by hand, raising the gate ever so slowly. Calm, rational thinking. It got roughly two feet off the ground, then jammed. “Jimmy” went from relieved back to panic. Again, I tried to encourage him that his worrying would not help, and that clearly, this was not his fault. I told him, we were united in what happened, and it was beyond our control. We would deal with whatever we had to and get through it.

That happened before my diagnosis of Hodgkin’s Lymphoma in 1988. Oddly enough, I had the similar approach when I was diagnosed. I was recently engaged (to my first wife), to be married six months later. I had two thoughts. One, I did not want to die, so I would go through whatever treatment was necessary. Two, my fiance may want to rethink our future as it would likely not end up the way she had always dreamed her life would be.

But there is a point in time, after the treatments are done, and you get told that you are “in remission,” that a little voice rents a room inside your head, that constantly haunts you, “what if the cancer is back?” This can be triggered by a symptom that has appeared that is similar to when you were diagnosed, especially a swollen lymph node. We get swollen lymph nodes all of our lives. That is their job as they handle the bad things going on in our body. It is just that one time, that one time, that one lymph node had cancer. So it is very easy to forget how common a swollen lymph node is, when it is replaced with that one time, when you had cancer. This can happen with other symptoms as well.

Another time though that anxiety takes over your mind, is approaching follow ups, and any testing that is done, especially scans. Hence, the nickname “scanxiety”. This anxiousness is at its worst the very first appointment after completion of treatment, because after all we have been through, we do not want to go through it again. So as we wait for blood test results, we wait for a doctor to call us back, and then topped with our subliminal thinking that we might just have symptoms again, that are not really there, we worry.

My approach has always been, I cannot change the results of any testing. If the results are good, hurray for me. If they are bad, I will deal with them. I am not ready to give up yet, even now, so I am prepared mentally to do what I must to get through any bad situation. To stay that focused, I cannot let anxiety rent a room in my head.

There is a huge difference between my manager struggling to get a store gate open, and me facing something that could potentially kill me and the anxieties. Of course, the store was an isolated incident. But my health was something that was going to be faced my entire life. So admittedly, it was not always this easy to control this anxiety in the beginning. But I took it one day at a time, then by the week, then by the month, by the quarter, then by the year. Soon, five years, 10 years, 20 years, and now, I am at year 32. It did get easier to deal with the anxiety and fear of my cancer coming back.

And as I faced late developing side effects from the treatments that have caused some severe situations with my health, I have adopted the same strategy to deal with the anxieties, of waiting for results and corrective surgeries. I know how I would feel if everything turned out good. I know that if something was found, I would have to face it and deal with it. I would find the best hands to care for me and get it done. But I would do it. Anything in between those two extremes, I can handle.

This calm demeanor of mine has come in handy in the regular world as well as unfortunately I have faced several crisis requiring quick and calm thought processes from witnessing and assisting with car crashes, a fire evacuation, and multiple family medical emergencies.

I go through life the same, no matter what I am faced with. I prepare for the worst, knowing every possibility, and I hope for the best.

Now, I mentioned back in the beginning, that I have actually suffered a panic attack, a few actually. These were different that provoked by a diagnostic event, but rather a developing issue. All three times, I believed I was in the middle of a cardiac event, having a heart attack. With my cardiac history, I am surprised this is the one thing I have not dealt with yet. But as the anxiety rose, so did the psychological effects of becoming paralyzed by fear, uncontrollable and rapid breathing, and pending doom. It would take hours, and at least two of those events led to the emergency room. So, just to be clear, there are different levels of anxiety.

And finally, it is understandable and normal that the anxieties overcome us. I was one of the lucky ones in the beginning, having gone eighteen years before my body started falling apart from my treatments. And because I am more familiar with testing procedures, and yes, being able to read my reports now (I really do deserve an honorary doctorate), I am still able to maintain my composure when it comes to dealing with anxieties. But there are so many that I know, that have had their Hodgkin’s relapse, not only once, but several times. Some have gone on to have second, third and fourth cancers. Yes, the anxieties we face are normal and understandable.

I also try to keep it in perspective. And my therapist accused me of this thinking a long time ago. And if you have followed my blog long enough, you will agree with my therapist, I really do not place the level of seriousness of the things I have gone through that I should. I look at my fellow survivors, and feel that what they are going through is worse than I have faced. Many are gone now. I have survived cancer over three decades, deal with a multitude of health complications from that cancer, but I deal with what I do, because I have to. And I have a lot I want to get done yet.

Cancer Or Covid19, Which Is Actually Contagious?

The title of this post seems a little obvious. But is it? There can be no doubt, in the hundreds of millions of cases, and millions of deaths, and so many more hospitalizations, Covid19 most certainly is contagious, but over the last two years, one of the top causes of death, along with cancer, and heart disease. And that is in just two years. Yet, after over two and a half years, a leader of the free world, we have so many, who still do not believe in the severity and the challenges posed by a Covid19 diagnosis or how to prevent it. My post is not meant to be about Covid19, but rather, to compare our attitudes towards another major cause of fatalities, at one time, believed by many, to be as contagious if not more so, and actually feared probably more, cancer.

Chances are pretty good, that you would be hard pressed to find anyone who would actually believe that cancer is contagious today. But decades ago, this was not always the case. I was diagnosed in 1988, the tail end of the time period when this belief would begin to fade away. From my experience, I was isolated from my friends, not by my choice, and it was never talked about. Could they have actually believed they might “catch” my Hodgkin’s Lymphoma? Or were they simply avoiding what they felt might be the inevitable, seeing me get really sick from my treatments, or worse die and they did not want to expose themselves to that personal pain?

Of course, as a newlywed back then, my spouse (1st former spouse) had concerns about being exposed to my treatments through residue through either skin contact, breath, or bodily fluids. I know she did not want to have any of those chemical or radiation substances in her body as well. She knew the side effects that I was experiencing, and she did not want that to happen to her. I cannot say I blamed her.

But for those treated in the years and decades before me, “catching cancer” from someone else, was a real concern. And sadly, for the patient, this meant isolation and abandonment during the most difficult time in their life. Emotionally, I believe that this played a negative role in survivorship.

This is the thing that I struggle with. I have had cancer, but as of this post, not Covid19. I have never believed that cancer was contagious, but respect fully the dangers of Covid19. How could we as a society have been more fearful of “catching” something that was never contagious, and be so ignorant to the concerns and necessary precautions against something extremely contagious?

In fairness, there is a lot that we have learned about cancer, and who might be diagnosed with it. But as far as spreading from one person to another, it is not going to happen. Heredity, life choices (such as diet and smoking), environment, and yes, certain viruses (such as HPV – human papillomavirus) can lead to a diagnosis of cancer. But this is far from being contagious. Clusters of certain cancers, often related to environmental events such as Three Mile Island and the Dupont PFAS exposures, make it seem as a contagion type situation, but it is not. Even a pregnant mother with cancer, is not likely to pass her cancer on to her baby.

A main difference between cancer theories among average people in the 1950’s through the early 1990’s and today, lack of social media and the internet. We literally dealt with word of mouth, and if we were learned enough, what we were taught. There was no instantaneous correction to stopping myths from spreading.

Yet, here we are with all the technology, and with the knowledge we have of a highly transmissible virus, between the misinformation, issues with communication by the professionals (which does not mean they were wrong, just that things were learned and thus things changed), and politics, I wonder how we would have handled the myth of cancer being contagious in the 21st century.

While I am on this topic, and as I occasionally see discussed in various forums and internet pages, I would like to dispel some other myths, at least about cancer. Right now, people are too concerned with being “right” to address logic and facts when it comes to Covid19. After two and a half years, you are either following the recommendations or not, and your are accepting the consequences of those decisions or living life intelligently to not intentionally expose oneself.

So, without further ado… from the National Cancer Institute (last updated August of 2018)…

  • cancer survival rates continue to improve with many cancers now over 90% survival rate
  • sugar does not affect cancer, what it does do, while cancer cells do consume sugar, it does not have an impact on spread or growth or survival. What sugar does do, is affect other concerns of health such as diabetes and obesity
  • there is no evidence that artificial sweeteners cause cancer
  • attitude does not influence the cancer itself, but can help in allowing social structure leading to better emotional support from family and friends, and that can make a difference
  • cancer does not get worse exposed to air
  • there is no proof that cell phones cause cancer
  • electric power lines are not proven to cause cancer
  • antiperspirants are not known to cause cancer
  • there is not convincing evidence that hair dyes lead to cancer (a big topic among survivors who want to stay on top of their gray or just go for a color change)
  • alternate and complimentary therapies such as certain herbs, while helpful in dealing with side effects from treatments, do not have major scientific proof as to benefits of treating cancer. The important thing, while I personally approve of alternative and complimentary therapies, that it must be done with the blessing of the treating oncologist, because of the potential risk of any herbs interfering with the treatments. Any delay or negative impact can cause issues with the outcome of remission or worse.

The 2nd Chance For My Dad

This time of year is always difficult on me. And instead of getting easier, this year it has actually been the hardest for me. It was eight years ago yesterday, I lost my father to lung cancer. There are several factors that have made this a difficult day more so this year than others. But perhaps, this year, will lead to better years.

I would describe the relationship with my father in two parts. The first part, and the one that would have the biggest impact on me, would best be described as barely existent, estranged for the most part. I am an adult child of a divorce, and the relationship with my father during my childhood was a result of stereotypical behaviors associated with a divorce involving children leading to both my father and I making choices we would both regret later in life.

When we made amends with each other, it was in my mid-to-late twenties. My father would tell me many times throughout the rest of his life, that he “wished things would have been different.” When I adopted my daughters, I told him, though we cannot change what happened, he has the chance to be the best grandfather a child could have. And that would mean so much to me, as well as to him.

There are a lot of fun “grandparent” stories about my father, including his one and only sleep over with two very active granddaughters who like to explore at three in the morning.

But today’s post is about a particular time in my life with my Dad, and its current relation to today.

As I said, my relationship with my father was strained, and through my teen years, it became more difficult for me to deal with. Soon, I would even stop going with him for his parental visitation, because I was that annoyed, even angry. I cannot even tell you what it was about, only that I was told how I was being treated. I could not see it in the beginning, but over time, I came to see at that time, everyone else was right, and my father was wrong.

I was going to give him one final chance. I was going to be graduating high school, and I had a ticket for him. I mailed him the ticket, along with a short note. It was to the point. “I need you to come to my graduation. If you do not, I don’t ever want to see you again. It will be the last time that you disappoint me.” Long story short, he never came. He was living ten minutes from me, and never stopped by, never sent a card, never made a phone call. As far as I was concerned, I was done.

Spoiler alert, my dad and I having made amends, took the opportunity that I had offered, to be a great grandfather to his granddaughters.

It was near the beginning of his diagnosis of lung cancer, that I had filed for my second divorce. There were actually several things going on in my life that were all stressful at that same time. I did not want to burden my father with my divorce because he knew how his divorce affected me, and did not want that for my daughters. While he offered me emotional support, because unlike my first divorce, this divorce would involve my children, something that he could relate to. But soon into his diagnosis, I would no longer talk to him about my case, though he would ask. It was just not fair to burden him with what was being done to me.

It has been eight years since he passed. And now, his oldest granddaughter, by me, is graduating from high school. And it is causing a lot of flashbacks for me, some quite hurtful. The comparisons cannot be any more different in the choices my father and I made as parents. My father would eventually fade from my childhood, not even with the challenge of a complete severance of our relationship could convince him to show I was important to him.

Unlike the choices my father made in his divorce, I made a promise to myself, and to my daughters, that I would be different. Oh, I heard plenty of screams of “you are just like your father” from the various “flying monkeys” (Wizard of Oz reference, you figure it out). Nothing could have been further from the truth.

I did everything I could to be involved with my daughters, at least within my abilities. If I asked, I was answered. If I did not know, I was not told. So, yes, I did everything I could. The most difficult decision I had to make, and the explanation worthy of a post on its own, was where I chose to live, and sadly, it was more than 1300 miles away. As one friend put it, “it had to be pretty bad for you to move that far away from your daughters.” Hard to believe, there have been moments, when it appeared not be far enough. But, I made it work, at least on my end. A custody order was written, and I honored the order to the letter, modifying the order over the next several years as the girls got older. Again, if I knew of something, I was there. I have so many memories of my daughters in the years that I missed with my father when I was younger. Even Covid19 could not interfere with the love and need to be with my daughters in their lives. No, I was nothing like my father in this divorce.

So, here I am, about to see my oldest daughter graduate high school. There are already comments on how weepy-eyed I will be, and admittedly, I know I will not be able to control myself. The odds of me seeing this day because of all of my health issues did not have me being here. But the last eight years of my divorce could have easily turned out much differently.

My Dad fortunately did not get to see how things had gone for me during this process, but I do believe, that if he were here today, he would be sitting with us in the stands to watch his granddaughter graduate. And as I told him long ago, “it is too late for you to be my Dad, but you have all the time in the world to be a grandfather to your granddaughters.” Yes, he did pass away before this time came, but it was that 2nd chance he got with my daughters, and the influence he had on me, that completely make up for the opportunity that he and I did not have. And I know he will be looking down on us that night, proud of his granddaughter, proud of his son.

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