Paul's Heart

Life As A Dad, And A Survivor

04 Apr 2021
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Happy Easter


I would describe myself as a “traditional” kind of person. I may not have traditions, but I do want them. Traditions are important. They remind us of times that we could count on, safe, happy. All too often, we also recognize that traditions come to an end.

Most of my childhood, we had two kinds of get togethers, Sunday dinners and holiday meals. My grandmother was the common attraction as we all gathered for her. Sadly, we knew there would come a day that she would no longer be with us, and it was likely we would no longer get together. When she passed, those traditions were gone. I knew that it would happen.

In my adulthood, pre-parenthood, it was fairly easy, my 1st wife and I would just hop from one family to another on holidays. There were not really any thoughts or feelings behind these gatherings, because at this point in my life, I had become really jaded against holidays because of the various crisis that I had faced, commonly around the holidays.

But that changed with my second marriage, and the arrival of my daughters.

I had to start caring about the holidays again. As I child, I knew that it was important. It was also another chance for me to open my heart to holiday traditions, these of my own. Christmas, Easter, all of the different holidays would be fun again. At Easter, just as when I was a child, Easter baskets were hidden in the house, as well as some other fun plastic eggs with treats inside. I usually like to commit 100% to the act, but admittedly looking back, I failed in one aspect of proving the Easter Bunny had arrived. Sure, he at the carrot left for him, in retrospect, I should have scattered Cocoa Puff cereal on the floor just for effect. But, that is my sense of humor.

Our family had three separate celebrations each holiday, one for their mother, and one with my mother and one with my father. But Easter was the only holiday that my father asked to host. For years, he would cook a ham, and all the veggies. We scattered eggs in his backyard for my daughters to find.

Just as with the other holidays, the only bad thing, was that we spent the entire holiday, out on the road. With my parents living an hour away, that meant at least two hours on the road, and the countless hours visiting homes. My daughters barely had any time to enjoy their Easter goodies once we got home at the end of the night.

This was the last year that I celebrated Easter. It was 2014. My father was dying of lung cancer, and would succumb a month later. Without him hosting the annual Easter meal, just as with my grandmother, we no longer got together except for one more time, at my father’s funeral. Since then, either by my choice in some cases, and in some cases others, that has been the last time most of us have even spoken.

As if things were not spread thin enough as it was, with my parents being divorced, now my second wife and I in the process of divorce. Holidays were going to get much more complicated. In an attempt to keep things as civil as possible during proceedings, and coming to an understanding with custody, I made the unusual and unexpected decision to give their mother every holiday. It was an easy decision to make, given my feelings with holidays, and knowing they meant more to their mother, it would be one less source of friction as we brought our marriage to an end. I would work out a time period around those holidays, but the holidays themselves, with the exception of Father’s Day, would belong to her.

Time has flown by. One of my daughters is now of adult age, and the other is not far behind. This is going to give a whole new meaning to future holidays, because it will no longer be me doing the scheduling to see them, but when they can, and want to see me. I am hoping that they both continue their education, and then likely after that, they will begin to build their lives, and hopefully their own families. And that will mean their own traditions.

Will they remember the fun things I did to make their holidays memorable? I hope so. But they will also want to create their own. But if there is one thing I wish I could do over again, and I hope they learn from my mistake, make the holidays about themselves, and their children. Let their children enjoy these special fun days. They do not last forever. Yes, I know, that means I am likely going to be making the trips, but I am okay with that if that is how they build their own traditions.

Posted in Adoption, Education, Family and Friends, Inspired By..., Recreation
02 Apr 2021

Inject First, Ask Questions Later


The expression actually goes “shoot first, ask questions later.” But I did not want to raise any flares on my post other than what my intentions were meant for, in regard to the Covid19 vaccine. But the expression, whether “shoot” or “inject,” both apply.

As always, I want to stress my support for the current options with the three vaccines for Covid19. I also happen to hold the position, that in spite of my compromised immune system and health vulnerabilities that make me a prime candidate for the vaccine, I am delaying getting the vaccine, as I wait for data (there is currently none), on the effects and risks of the vaccine with people in my health situation. I have written before all the different questions that I have, that have not been answered, in recent previous posts. But two events have come up recently, that have actually added to those questions. I am waiting to hear back from one of the individuals before I write about that one particular situation, but the other situation, I will talk about, is something that fellow long term Hodgkin’s survivors like me, know all too well. It is up to us to share what we have learned, because in many cases, doctors just do not know.

Among my questions about the vaccine: what are the potential effects of the vaccine, such as drawing down our immune system?, and will two doses be enough and if not, how many boosters can be given, and will it be safe?

But now a new situation has come up.

Back when I was employed, I had to undergo annual health surveillance (a physical) at work. This included a test for TB (tuberculosis). This was typically done in May. At the same time, I suffered with spring allergies that would result in an oil based steroid injection that I normally got in June. For years, this was my process. One year however, the surveillance ran late into June, and I had gotten my allergy shot prior to the exams and TB test. Unlike prior years, my TB test came back positive this time. I knew that I did not have TB, so this was going to be treated as a potential “false positive,” meaning a chest x-ray would need to be done to confirm that I did not have TB.

Unbeknownst to me, and without the work physician knowing that I had gotten the shot, and without me communicating with my family doctor that I was going to be TB tested, this “diagnosis” was destined to happen. Eventually I was cleared, and from that point on, I learned to make sure I had the health surveillance done prior to getting the allergy shot.

For cancer patients and survivors, our bodies have been changed physiologically, forever. Our bodies will react differently. Because of the nature of vaccines, to activate our immune systems to produce antibodies, there are concerns for patients in active cancer treatments, but a recent communication from a fellow survivor, reveals that even routine bloodwork was impacted enough following the first dose of the vaccine, to produce false diagnostics to be further looked into, not to mention, send someone’s stress levels through the roof. I know I speak for all cancer survivors, the last thing any of us want to be told, is that we have something additional we must deal with.

A fellow survivor had some bloodwork done, I am not sure of the reason why (it is not relevant anyway). It was done a week after receiving her second dose of a Covid19 vaccine. Results of their WBC (white blood cell count) had jumped 55% from the last result. An elevated WBC can indicate any number of things, from an infection (as simple as a cold or the most serious infection), a result of stress, or as many cancer survivors know first hand, a potential for a diagnosis of cancer.

The high result sent this survivor not only into a major concern, but was then subjected to a whole collection of tests and scans, even a biopsy, all based on that elevated number. These things would have been unnecessary had her medical team considered the vaccine response and the possible effects on bloodwork. In fact, a PET scan which is used for staging cancer patients, lit up like a Christmas tree, but more importantly, it showed that it was the vaccine as the cause for the results.

The good news is, the WBC returned to its normal levels, and of course, there was no further diagnosis. Yes, there was gratitude for the good news. But clearly, the lack of communication, the lack of knowledge, the lack of taking all things into consideration, had the potential to cause mistakes, at the least, a lot of unnecessary stress.

Sadly, this is not an uncommon situation for those of us long term cancer survivors. Just like the rush of these Covid19 vaccines, and again, I support them and believe in them, the research has not been completed. Just like for survivors like me 30, 40, 50, 60 years ago. Medicine is just catching up to us now and the late side effects from our treatments back then.

But in the meantime, we long term survivors, and patients, must be our own best advocates and make medical professionals aware of all of our circumstances when it comes to our care, whether we think the circumstances are related or not. Let the doctors determine if the issues are relevant. But they can only do that, if they know it. And that at the least, falls on each and every one of us.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
31 Mar 2021
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A Four Letter Word Never To Say To Me


This post is actually a follow up to yesterday’s post (“Someone Moved My Cheese”), as I received several comments, echoing my journey with frustrations and acceptance of things that I physically can no longer enjoy doing, because of the late side effects from my cancer treatments for Hodgkin’s Lymphoma decades ago. In summary, these conditions cover the spectrum of muscular damage, cardiac damage, and pulmonary damage.

Before I proceed, a disclaimer, because I am going to use a couple of phrases that are offensive to some, but admittedly not as offensive to me, as something else that can be said. And several of my fellow Hodgkin’s survivors would agree.

I have no problem if someone tells me to “fuck off” or “fuck you.” Using that phrase with me tells me that it is your problem, not mine. But the four-letter word that I consider far worse, a fighting word, is “lazy.”

Garfield the cat had no problem with the label “lazy.” It was badge that he wore proudly.

As a society, many have no issue judging someone that they see either inactive or uninvolved as “lazy.” It does not matter why the target of the judgement appears as such, the declaration is made. It gives a person a feeling of superiority to be able to declare that they are better than someone else. But is calling someone lazy really setting a bar high in thinking of yourself as superior? What if there is an actual reason, why someone is unable or unwilling to do something, and it has nothing to do with laziness?

I was, a third generation blue collar worker until about thirteen years ago. I worked nearly every day, normally perfect attendance except during the time period of my cancer with the occasional days that I missed. My mentality, like my family before me, we showed up to work, even if we were rolled into work on our death bed. Reliability was definitely one of my strong suits. In the end of my working career, it was not unheard of for me to work 50-60 hours at my full-time job, and perform three to four gigs disc jockeying over the weekend. Some may see this as being committed to providing for my family, which I was. But it was also who I was. I just worked. It is what I did. It was so bad for me, that my daughter at age nine, asked me, “daddy, why are you always working? We never get to see you.”

When you do not make the conscious decision to do something, sometimes it is taken out of your hands and the decision gets made for you. And that happened to me, nearly thirteen years ago this month. It was the beginning of learning not only that my body was no longer capable of carrying the load that I had done my whole life, but why. And my doctors gave me a decision to make. I could either keep going at the pace I was, and expedite my issues and my fate, or I could give myself a break, allow my body the rest it so desperately needed, and slow a process down, that can never be reversed if I ever wanted to see my children grow old.

The denial was powerful. “How dare you tell me I have to learn to take it easy? Fix me. I will be good as new and continue on. You don’t know me and what I am capable of. I don’t know the words “give up.”

But my body did know the words “give up.” And since I would not make the decision on my own, soon after that event in April of 2018, emergency open heart surgery, my body would frequently, and severely, give me reminders that I was not taking the advice from my doctors seriously, resulting in multiple trips to the hospital, too many in critical conditions.

In 2012 and 2013, still fighting my fate, with my heels dug in against my body, another direction occurred, affecting me and my health. This was purely coincidental, but the benefits to my body, would finally do, what I had struggled to do, give my body the break it needed. In as brief as I can explain, my company was going through major downsizing. Up to this point, the company had accommodated my health restrictions as required by the Americans With Disabilities Act (ADA). But with the downsizing, there was no longer any other work I was capable of doing for them. With their assistance, I was placed on the path to disability. This was something I had heard of so many other fellow survivors, but nothing I was prepared to accept for myself. But now, I had no choice. It was out of my hands.

And then I heard it for the first time. “He is just lazy.” These were words that I heard from a co-worker. Unlike my openness here on “Paul’s Heart,” I was not as open with my health issues at work, as those issues often got used against me. But, this individual, and many others to follow, felt they were qualified to summarize with their limited knowledge of me, that I was “lazy.”

Honestly, I did not give a lot of value to these opinions at work. There is credence to the fact, that we spend more time with our co-workers than our own family (at least in the awake hours), but that does not mean there is understanding like you would have from family members who know what you may be dealing with. That was definitely the situation in my case. All that mattered to them, was that I was not being given the same work load as them, and I was still making the same pay grade. I got away with being “lazy.”

And if it were only my co-workers who felt like this, that would be the end of this post, but it is not. It got worse. Because then family did join in with this belief towards me. Most of my immediate family, not only feel that my inability to perform certain functions anymore, is due to laziness, they actually deny the seriousness of my health issues overall. Forget the fact that many were witnesses to the multiple events that I experienced medically. Forget the fact that some family members were present when doctors explained everything to me, what was happening, and how I would never get better. They were there, yet they still deny it. Instead, they too, call me “lazy.”

By the time I left my employer, I was on three separate opiodes for pain, and a major sleep aid to get to sleep, and even that was no longer working. All so that I could work the amount of hours that I was working, that I was expected to. And the damage to my body from my treatments continued to progress and escalate in severity. This was my quality of life. My doctors told me, I was killing myself by pushing as hard as I was.

I am far from “lazy.” And the same is said for all of my fellow Hodgkin’s survivors that are reading this. We are far from lazy. We had monstrous things done to us to cure us of our cancers. And we get through our lives the best that we can, enjoying what we can, and most importantly, using the time that we have, to spend it with those that we love. In the end, that is what matters to us.

I have plenty left in me if you want to challenge my abilities. I am far from “lazy.” But as strong as I feel about that four letter word, will be met with one of my own if you call me that. Fuck you! And like everyone else who has taken that stance with me, you are erased from my life. You mean nothing. You are pitiful that you are actually jealous of a situation that I and others have to live with the rest of our lives. You are pathetic. You want to trade places with us, because you think we have it so good, have at it. I know plenty of takers who would give anything to enjoy life the way everyone else gets to.

Unlike those people however, we appreciate what we have, the time we have, and the people who want to be a part of our lives.

Posted in Bullying, Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart

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