Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

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.

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.

Someone Moved My Cheese


It is ironic, that this morning, I wanted to write a post about dealing with change, and the first thing I noticed when I logged onto my blog, I was being forced to finally move to the new format of WordPress. Just as other things that have progressed or changed over the years, I am definitely not happy with this one. There was no reason to fix what was not broken.

This reminds me of a a co-worker I once had, a very sweet woman, who, during a time of major change within the company that we worked for, saw many of us having a very difficult time accepting the many changes that the company was enacting. This went beyond getting Grandma to use a microwave or setting a DVR. These were major changes to our work routines, our work quality, and eventually, a reduction in manpower.

Nonetheless, she brought in this book, “Who Moved My Cheese?” by Dr. Spenser Johnson. When applying the book to real life, the “cheese” is what we want, and the “maze” that the mice go through, is life for us, no matter what we are dealing with, and what you need to do to be successful getting to that “cheese.” A simple read, but a profound example of life.

This thinking actually applies to many aspects of my life. In many cases, I am able to roll with most changes, some, not so easily. And there may be one or two that I am willing to fight to the death over. But one that has been the most difficult for me to adjust to, and every now and then, I am reminded of what I must accept.

The late effects of my cancer treatments have wreaked havoc on my ability to enjoy things in life I once did. Unable to tolerate extreme cold, a low endurance, and pulmonary issues leave me unable to do one of the things I enjoyed doing most, skiing. Upper body muscle issues no longer leave me able to play a variety of sports that I once used to, softball, bowling, and even enjoying nature, whitewater rafting. The list goes on.

Having two young children, one now an adult, another soon approaching that age, I learned to substitute my desires to enjoy those things I once did, with enjoyment of watching them, participate in fun adventures.

As my daughters have gotten older now, the challenges of entertaining them, occasionally find me wanting to push my limits, for just one more opportunity to do something with my daughters, not because I think I can, but because I want to. But the fact is, I cannot.

And that is how I deal with these sometimes overwhelming feelings. Being older now, my daughters are very aware of my health issues. They have witnessed my “breathing” attacks, have been told about my history, and are very well aware of others like me, who have children also. They also know, the time they get with me, is special and not a guarantee with my health.

The Covid19 pandemic has definitely made things even more challenging for me when it comes to providing entertainment for my daughters. I do all I can to protect them and prevent them from contracting it while with me, but they also understand my vulnerabilities.

So, when I find something for them to do, out doors, meeting the recommended criteria for safety (distancing, masks, and hygiene), I remember what it was like for me a long time ago, being able to enjoy that activity, and I want to do it with them now.

But I cannot. And I was reminded of that, as my daughters returned to shore. They found out the science of water current, that it was much easier going downstream for half of the journey, but a lot harder coming back, and their arms and shoulders let them know that lesson. This would have been a disaster for me, risking tearing both of my rotator cuffs, doing just this simple and easy paddling. As much as I wanted to make this trip with them, all I could do is watch.

I am reaching the end of their childhood. And as I go through this maze, and the cheese continues to be moved, I realize when I get to the end of the maze, it is going to be the memories of the enjoyment I had, watching my daughters share, laugh, and enjoy their childhood with each other.

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