Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

21 May 2022

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.

Posted in Adoption, Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
17 May 2022

My Bucket List


It was a star-studded movie in 2007, starring Morgan Freeman and Jack Nicholson, called “The Bucket List.” The movie was about two gentlemen, dying from cancer, who make a list of things that they want to do, before they die, and then proceed to do them.

I had never heard of this concept, a “bucket list”. I had heard it frequently following the movie, and still do today. When I hear those talking about their “bucket lists,” I hear of a lot of extravagant things that these people think are important to them to make them feel as if their life is complete. They are not necessarily dying, in fact, most likely, they are in great health. This fancy wish list is just stuff that they want to experience in their life, not just before they die.

I can admit, years ago, I had places that I wanted to visit, though I would not say that it would have to be as some sort of destiny pact. But, as a teenager, I had a school project to complete, about the stages of life. I had been given the stage of death. I needed to find someone to interview, and write about, their feelings of death. I ended up choosing the last person I ever wanted to even think about dying, my grandmother, hoping that she would assure me that she was not even thinking about her end. Well, it turned out, until that moment, having never heard her mention death before, it turned out, she had quite a bit of thoughts about it.

“I have had a great life. I had a good marriage to your grandfather. I was blessed with three children, all who grew up and got married. And I got to be a grandmother. I have gotten to travel and experience so much. But I miss your grandfather. And if today would be my last day, I am ready. I could not ask for anything more of my life.”

That paragraph is in quotes, because I remember the conversation from 1982 (I was a senior in high school). And while I loved my grandmother to the ends of the earth, and the last thing I would ever want to hear about, her passing, I found myself oddly comforted by her feelings. I know she was sincere in what she said. She passed a little over sixteen years later, and got to see her grandchildren get married, and even get to be a “great” grandmother to yet the next generation.

Back before my health went “kablooey” as a result of developing late effects from my cancer treatments for Hodgkin’s Lymphoma, I had lots of things that I had hoped to do. And it was clear that I had the ability and resources to do everything, as long as I stayed the course. My body had different ideas. Since my initial bombshell of a health event back in 2008, a “widow maker” heart blockage, and surviving that, I have had at least six more events that had the same severity and potential for fatality. And as many fellow survivors know, because of these health issues we have, our bodies are unable to deal with incidental events in expected fashion, because our health has been so badly compromised. Too often, I have seen a survivor get through an event, recover, to all of a sudden have a complication, and then succumb. The trauma, just too much for the compromised body to take.

So yes, some of us tend to have a hypersensitivity to our mortality. This by no means we think about dying. We don’t. But we do think about living, especially with the time we have left. And yes, that reminds me of, “The Bucket List.”

I need to preface my bucket list with the fact that, well, I know things. When it comes to the heart, I have had three surgeries since 2008. These are not permanent repairs, and as of right now, I would not be a candidate for a heart transplant because of all the other issues and risks I have. That means, I need to work with what I have, and make the best of it. But if all goes as planned, and there are no further major complications, I know how much time I am likely to have, before needing to be concerned again.

I have already approached the expected lifespan of my bypass, but the good news is, that currently, it is still holding up better than fifty percent. Needless to say, I am thrilled with that, because as the rate of the original blockage took eighteen years, I am still going to have another seven to ten years before this is likely to become an issue again. A stent I had placed in 2019, likely to last up to ten years, and the valve replaced late last year, is expected seven to ten years before it needs to be replaced.

For the average person, without my health issues, when the time would come, you would just have the surgeries to correct everything and that would be that. But with the long term damage from the radiation damage (still active after 32 years) and chemo damage, the risks from a second open heart surgery are not good for me. Bleeding out, infections, and death are at a much increased risk, and then even after those risks, the healing is difficult leading to other issues.

Now, while this may seem overwhelming, and as many close to me who still do not get me, I do not live my life thinking about my “end.” Quite the contrary, like “The Bucket List” or Tim McGraw’s song “Live Like You Were Dying” or Bon Jovi’s “Live Before You Die,” I actually do have my list of things that I want to accomplish or experience before I face that level of heart surgery again. And as you can see, compared with what my grandmother stated, I would, and already do, consider my life a good life.

With that said, and knowing that I have time to experience all of this, I believe this is all possible.

  • Having seen my daughters grow into young ladies, I want to see them graduate high school (this one is right around the corner).
  • I would like to see both my daughters go through some sort of continuing education.
  • After having DJed so many weddings in my life, and played dozens and dozens of Father/Bride songs, you guessed it, I want my turn walking my daughters down the wedding aisle (if they choose to get married that is).
  • I would like the experience of being a grandfather, though the “title” or reference has yet to be determined. Grandparents get to have so much fun and I remember how much I loved mine.
  • There is one thing I would like to do one final time, perform one more gig. I already have it in my mind, accompanied by two acoustic guitars and a conservative drum kit, an intimate gathering for one final performance by me vocally.
  • And finish writing my book, based on my blog, “Paul’s Heart.” For crying out loud, after two and half years during Covid, I am still only 2/3 of the way finished.

And that is my list. It is not expensive, well, except for the college part. But it is all doable, as long as my body cooperates. My fellow survivors understand the suddenness that our issues have and affect our bodies, so I do not take anything for granted. Though my diet is not ideal, I do everything else I can, exercise and keep stress to a minimum, that I will have my best shot at achieving all of the above things.

Because to me, a bucket list means nothing, if it cannot be remembered by everyone else. And if and when that time does come, hopefully not for a while, there will be a lot to remember and talk about.

Posted in Adoption, Cancer, Education, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment
27 Apr 2022

Science And Numbers Have Not Lied


First, looking at this picture, do not be distracted by what I am listening to. I actually do like Nickelback. Don’t judge me. LOL.

Obviously, it was that time again for me to get bloodwork done. And for one of the few times, this was a blood test that I was looking forward to. For one, I keep getting the same phlebotomist who performs the draw flawlessly, painless, and quick. The other reason, the test would provide information in regard to my vaccine status and overall Covid exposure.

But before I go any further, I will save anyone time. If you do not believe in science, and/or allow that it can be flawed at times, skip this post. I am not going to get into anything political about this.

From the beginning of the pandemic, science, at least the CDC, NIH, and FDA, had been concentrating on the more susceptible with their studies. The Leukemia Lymphoma Society, recognizing that it was not likely, that studies would be done on those of us who are immuno-compromised, decided to organize their own study, using patients how have or had dealt with blood cancers, such as leukemia and my cancer, Hodgkin’s Lymphoma.

I am not going to get lost in the weeds with all kinds of details, but here is the summary. In my particular case, I made a conscious decision to hold off on being vaccinated, until I knew that a 3rd dose would be approved. I had more than a strong hunch, that two doses would not be enough to protect me based on prior vaccines. For me to have gotten the vaccines when they became available, would not have allowed me the full benefit I needed from a third dose. Here is my proof.

Following my first dose, my blood showed no traces of antibodies, either from the vaccine, or from a Covid exposure. This was done two weeks after my dose.

My second dose was given 28 days after the first dose, with bloodwork following two weeks again. This time, there was a slight appearance of antibodies from the vaccine, nowhere near what I needed for protection. But the good news was, I also was not exposed to Covid.

Because of the choice I made, unlike others who got their vaccines as they were originally available, and their 3rd vaccine, 5-6 months after their 2nd, I received my 3rd dose, just 28 days after my 2nd dose. As I expected, the 3rd dose was a homerun, producing a robust amount of antibodies, and confirmed, still no exposure.

All I had to do was wait. I knew that I would have more bloodwork, to see if I still had coverage, but I was already anticipating a 4th dose being necessary. The lead doctor of the study, had already hinted at the likelihood. But now, as the fourth dose had not been approved yet, I am now in the position, where I needed to wait five months, to get that fourth jab. But before that, yep, more bloodwork.

This bloodwork would confirm what my levels were like after five months from the 3rd dose. The 4th dose had already been expected in my mind. I anticipated a drop in my antibodies, but not as badly as they had, an 82% decline over the five months. I am as close to no longer being protected again as I was back in the beginning of this. The 4th dose is now scheduled. More bloodwork to come. But will there be a 5th dose or some other plan? Clearly, Covid will be a lifetime risk for me.

There was some good news with this latest blood test. To be clear, I have followed every recommendation from the CDC, regardless of the “keystone cop” approach with communications, the message did not change, “use the caution we recommend”. Masks. Wash hands (really cannot believe people needed to be told that). Avoid indoor crowds. For well over two years, I have done it willingly, without the false trope of “losing freedom” or any of the other false claims that these precautions actually did do. I have faced several exposure risks, from having to be in the hospital for three surgeries during Covid times, people around me discovered to have had Covid and remained silent instead of being concerned for my vulnerabilities, and as shown in the photo below, a crowded airport as I waited to check my daughters bag for their flight home (the mask mandate was still in place, yet 75% of the people were unmasked, and the wait was well over an hour and a half, packed together, indoors). The blood test confirmed, as with the others, “no infection.” Yes, I was still following all those recommendations from the CDC that so many complained about as flawed. The fact is, they work. Need proof?

Of my sibling and I, it is me that has all the vulnerabilities. My sibling was (spoiler alert, I did write “was”) younger, and given all of my complicated survivorship issues, expected to easily outlive me. But there was a problem. My sibling followed the chain of false information and reasoning, from “Covid is a hoax” to “Covid is an attack on Trump,” to “I don’t trust the vaccines,” to “I put my faith in God to protect me,” to “I put my faith in God to cure me.” As I said, “spoiler alert”. I am the one writing this post, not my sibling. My younger sibling died because of all of the anti this and anti that.

The mandates are gone and as expected, all those who were “forced” to protect themselves have now made their choices to throw all precautions to the wind. Many have been infected multiple times, emboldened that they have survived each time, and therefore, will not go to any lengths to protect themselves or anyone else. As one of my friends mistakenly offered his opinion, “herd immunity is what is needed. Which I have always said, herd immunity would come at such a high cost, millions of lives, to which this person responded, “all for the cause. It is the patriotic thing to do.” I was speechless at the thought that someone claimed to have strong religious faith, was okay with sacrificing lives for the cause of the country, as opposed to following simple recommendations. And this sentiment still continues over two years later.

My goal as a long term cancer survivor, as a parent, was to see my daughters grow, become adults, start their lives. As hard as it is, and the odds that are against me doing that, Covid was not something I needed thrown in front of me, making these wishes even more challenging. Yet here I am. I need to avoid Covid so that I can be there for my daughter’s graduation just next month, fortunately, will be an outside event.

So, I must continue to mask. I always wash my hands. I avoid crowds (in full transparency, have always hated crowds anyway). I do go places, but at “lighter” times of day when not as busy. I have just begun eating out, but only if outdoor seating available, or just do take out as I have during the whole pandemic. I have no interest in overpriced boring movies in theaters or concerts. I am pretty much doing all the things I want to do, with all the precautions. I am still free. I am still alive. That is science. Those are the facts.

Posted in Bullying, Cancer, Education, Family and Friends, Inspired By..., Politics, Side Effects, The Heart | Leave a comment

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