Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “October, 2021”

After You’re Gone

Over the years, writing “Paul’s Heart” has been rewarding, therapeutic, sometimes entertaining, and occasionally, a wonderful trip down memory lane. Sometimes, it can be heartbreaking, provocative, and challenging. If there is one thing that can frustrate those in my life, I am consistently open, candid, and at times, brutally honest in my posts. I am this way for one reason. While there is much to be celebrated being a long time cancer survivor of over 31 years, and I consider myself to be a great Dad to two of the most wonderful daughters a father could ever ask for, I will never discover a cure for a disease. I can never donate blood or organs because of my health history. Wanting to have a feeling of worth, more than just that of a father, I feel that if any of my experiences in my life that I share, can help even just one person, then my post, my openness, was worth it. Whether someone feels encouraged, inspired, moved to do something in life, for the better, from my examples in cancer survivorship, patient advocacy, adoption, divorce and single parenting, if my words help just one person, then it has been worth it to me.

In all my of years writing, I cannot recall ever mentioning that I had a younger sibling. There are reasons for that, that I will not get into for the purpose of this post, because it is not relevant. To keep it simple, we had been estranged. And yes, that last sentence is past tense. My sister died just over a month ago, from Covid19. Again, the purpose of this post is not for sympathy. I do not ask for any. But there is someone hurting right now, that does impact me, my mother. As a reader of “Paul’s Heart,” you know I have a lot of extreme health issues. My sister should have easily outlived me. However, she made a decision, and was wrong.

So as I often do, thoughts filled my head, and with nowhere else to go with those thoughts, they went to paper, raw, nonstop. My sister and I had major disagreements that we were willing to take with us to our graves. Now that is guaranteed. But there was still something needed to be said.

It is my hope, that if you are one of the many, still unvaccinated, or still fighting against ending this health tragedy, that you can see, your thoughts and decisions that you are making in not getting vaccinated against Covid19, affect more than just you. You cannot say “the media” this or “that stuff does not happen” or ” it was something else” just because you do not like a resource. This actually happened. My sister died from Covid19 because she refused to get vaccinated for a number of reasons, all of them wrong. She did not need to die. This is the truth. If you truly feel, that the risk of a potential minor side effect if it happened at all, is worse than dying, because that is what you have been led to believe, read this story. Because in the end, it is not. Dying from something preventable does not just affect you.

After You’re Gone

“First, I want to say, I understand why you believed what you did.  I also feel bad that you believed what you did.  But I get why.

Second, there is a part of me that is even proud, that you stood by your decisions, all the way to your last breath.  Nothing was going to break that rock.

So, here we are.  Now you are gone, dead.  But damnit!  You stood your ground!

And what did you get for the ultimate commitment?  Anything from the President you supported, who claimed Covid19 was a hoax in the beginning?  But even after acknowledging it was real, you still did not take Covid19 seriously.  Anything from the anti-vaxxer crowd and conspiracy theorists who pushed false treatments and their reasons not to take the vaccine, whose efforts you bought, hook, line, and sinker?  Will you be getting a medal for your “patriotism” for the stance as some would refer to you, a “patriot”, for the position you took?  Ah, how about cash?  Any reward for the ultimate sacrifice you paid for with your stance?  No?

Well, here is what you do have.

A spouse who still does not believe in getting the vaccine, even after watching you die.

Your children, though adults, will live without their mother for so many years, that you were supposed to see of their future.

Your own mother, now having to bury her child, something no parent should ever have to do.

This is not just about your decision.   It is also about risk, for others in your life.

There will likely be a funeral, during a time when Covid19 is still a huge risk.  This type of gathering is referred to as a super-spreader event.  It will be attended by those who have taken the same position as you, but also others who have believed in science and what is necessary to protect their lives.  Attending your funeral will still put them at risk, but they want to be there out of respect for surviving members of the family.  I guess you had not thought about that.

I bet you did not think about all the hospital staff that would have to take care of you and not only watch as you die, or like on your birthday, make sure you would be able to hear voices sing happy birthday from your family through a phone.  That is, if you were able to hear it.  Oh yeah, and then, the time when the ones who fought to save your life, have to tell your family that you are gone, and yet, another death they have had to witness that did not have to happen.

I am pretty sure you did not think everything through, that getting vaccinated to protect yourself against Covid19 was not just about you, but the countless lives that would be affected by you not getting the vaccine.  Now you know.  But it is too late, you are gone now.”

Hodgkin’s Survivors Vs Covid19

I want to be clear, this post is an anecdotal piece, in other words, it is based on personal stories of others, related or told to me. There is absolutely nothing scientific about this post, or is there?

From the first day that we were warned about Covid19, and the risks, especially to those with compromised immune systems, several things were being thrown around. First, we could not get the truth not just how serious the virus could be, that it even existed at all. Then there was the flipflopping of how to protect ourselves from what could not be agreed upon if it existed or not, was going to be serious or not. And then there was the fact, nothing could be done to prevent the virus, or treat for the virus.

For the immuno-compromised/suppressed population, most of us did not listen to the political banter, back and forth, who was trying to blame who, who was lying to who. Those of us in this situation have a much higher power to trust in our care, our doctors, you know, the ones committed to treating us for whatever ailment we face. We know that whatever advice our personal doctors would give us, is given from a trusted source, someone clearly looking out for our health. No politics.

Wear a mask. Socially distance ourselves. And hard to believe that we have to be told this one, wash your hands. This was the best advice that could be offered in the beginning, so that there could be a chance or putting a stranglehold on the worst pandemic in more than a century.

To follow these recommendations, those who chose to make this deadly virus political, spouted off, and continue to do so, anyone following these mitigation efforts “live life in fear”. And I suppose there is at least some truth to that statement. Given the mortality of Covid19 (733,000+ dead in the United States alone), and the increased susceptibility of infection, hospitalization, and risk of death, damn straight I am afraid of Covid19. Remember how I said that I listen to my doctors. To have my cardiologist tell me, “there is no doubt, if you get Covid19, with the health issues you deal with, especially with your heart, Covid19 will kill you,” yes, I do fear Covid19. But I definitely do not live in fear of it.

I live smart because of it. And there is a difference. With the exception of going to a movie, concert, or other large populated event, I am doing everything I was doing before Covid19. And though I know dozens of people who have been infected with Covid19, and more than a dozen who have died, including my younger sibling as recent as a month ago, by following the recommendations, I have gone grocery shopping, eaten food from certain restaurants (who also followed precautions), walked in parks, even facilitated visits with my children from state to state. This entire time, in spite of the risky behaviors of others in my area, I have remained uninfected. If I were living in the “fear” that others imply, I would not be living my life as I have from day one. Simply, I have lived smart.

Even with the promise of a safe and effective vaccine, some of us have issues that need further studies to make sure what amount of vaccine will work. And those studies are going on, and have been going on for some time. Results are coming in, the most major one, determining the need for a third dose. There are those, like me, that will not make antibodies without additional doses. And this in fact has been proven for me, as bloodwork shows, after my first dose, as anticipated, I had zero reaction to the vaccine, no antibodies from the vaccine, nor any exposure to Covid19 itself. So it will come down to at least a third dose, as long as the second one causes at least a small response. Otherwise, I have no idea what I will do, other than to keep doing things the way that I have. There is already a study on a potential 4th dose, and I am likely to fall into that category.

Living smart. Not, living in fear. I am getting my information from those I trust the most, my doctors. Not the media. Not even family or friends. Definitely not anyone I cannot confirm, especially through a grapevine.

So, how did my biggest fear, of a mass wipeout of other Hodgkin’s survivors like me from Covid19, turn out with minimal loss? Everyday, I would watch my feeds, to see who might have been infected, especially the many that I knew in New York, the original epicenter of the pandemic. The thing we all count on as fellow survivors, is that there will always be a fellow survivor, pushing someone to seek help, and not just if it is related to a late effect. A simple fever can prompt a sharp warning to go the emergency room as is common protocol.

But during the pandemic, we wasted no time, urging and convincing others to get help, right away. Those that did get infected, did not necessarily have mild experiences either, but their prompt decisions to get help, because they were urged by those who had their best interests at heart, was clearly a deciding factor in their survival.

Our survivors are not united 100% to be transparent either. There are a small number of those, who have made their choices based on politics and conspiracies, and even were fortunate to have “not so bad” experiences with a Covid19 infection to bolster their arguments. Though they will not acknowledge it, they were lucky. But the majority took this seriously, sought help when needed, and got through. I am unaware of anyone from my survivor circle passing away from Covid19, just our usual issues.

With the vaccines, again, the majority jumped at the opportunity to get vaccinated. And there are those who are hesitant for any number of reasons, some justified, some not.

Having been exposed to high doses of radiation to the chest, treated with toxic chemotherapy having a direct impact on the heart and lungs, and having no spleen leaving me susceptible to not just Covid19 but many other infectious diseases, I have no doubt, that it is the decision to live smart that has made the difference. And that does not equal living in fear.

A CancerKid Grown

I wanted to share a book that I recently read. As you can tell from the cover, it is not just about surviving cancer, but long term. Especially if you notice, that there is a title after her name, combined with the title of the book, you can tell that author Heather Flint Ford, O.D. has survived cancer a real long time.

Dr. Ford is the youngest diagnosed survivor I know, at the age of infancy, and has a survivorship longevity well into her fifth decade. Our cancers were different, however, our modes of treatment were similar, which is how our paths crossed.

For some of my older survivors, the cover of the book catches the immediate attention. What I assume to be a snapshot of her health record, the image states “technic: Cobalt 60.” Cobalt was the type of radiation used back prior to the 1980’s. Those of us treated from the 1980’s through the rest of the century, know how harsh our radiation was. Cobalt was even worse. The cover also states the dose and duration, 4000 rads over six weeks. This was very similar to my exposure.

Dr. Ford goes through in very clear lay person detail, her journey through cancer and survivorship. She recites what she was told as an infant, recalls what she did as a teenager, and then reflects on her adulthood.

She then transitions to the stage that myself, and many others currently experience, dealing with the many late developing side effects from our treatment exposures. Not only the late effects, but also the fact just how hard it is to find a doctor who knows what we are experiencing and how to treat us. And finally, she tells of the torment that gets buried so deeply inside of us, the pain, physical and emotional, because we mistakenly believe, it is part of the process.

“CancerKid Grown” is a great book, from a “you don’t have to be a cancer patient to understand” reader level. I enjoyed many of the references she made growing up, as I am from the same area as she was, so reminiscing was fun. And as people read her book, I get the satisfaction that at least more will definitely learn about the medical plights of the cancer survivor. As time goes on, there are only going to be more of us.

“CancerKid Grown” by Heather Flint Ford, O.D. can be found on Amazon.

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