Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

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.

A Reminder Of Loss


I wrote once before about one of my favorite childhood sitcoms that I used to watch, “I Dream Of Jeannie.” I referred to an episode where she discovered that she did not know her actual birthday, and the many questions that brought up. It led to her slumping into despair, to the point, that she was fading away, little by little, because she was so sad about that fact.

It was an incident with my daughters and a class assignment that prompted that post. And though I do not recall how long ago it was, it has been more than five years ago. Sadly, it happened again.

I try not to be over sensitive to ignorance about adoption, especially international adoption, and generally only react when it is racist in intent. But once again, another assignment, has provoked a sickening pit in my stomach. My daughter is to interview her parents on what it was like for them to experience my daughter’s birth.

My daughters both know they are adopted, duh. Although there is an inside joke, that even they partake in, that they have my eyes and hair, coincidence of course as I am not Asian, but have the feature of almond-shaped eyes. They do not shy away from the fact they are adopted, but they do not dwell on it either. My daughters have a father and mother. They experience things just like other kids. While they are aware of their culture, they immerse themselves as much as they wish, or not. So, both of my daughters pretty much go through life, like everyone else, not giving it any thought. They are who they are.

In full disclosure, the particular daughter who got this assignment, does not give it much thought when someone asks an ignorant question or makes an inappropriate comment. So, yes, it is me, the parent making the big deal. Because some day, someone saying the wrong thing, the wrong day, will make a difference to her. And really, it should not be this big a deal to handle differently. In fact, she has actually taken upon it herself.

As we reviewed the set of questions that she is supposed to ask me about her birth and our experience, since it is her paper and not mine, she will not need to submit my answers to the eight questions, which all are the same reply, “I was adopted. My parents do not know what it is like.” Take that.

Now, if you are bothered by that answer, do not blame me. That is the truth to questions that were being asked. It would not be the essay that her teacher would be looking for, but she would at least be answering the questions honestly, and if it shocks or hurts her teacher’s feelings, who cares? Her teacher did not care in assigning those questions.

Fortunately, my daughter is a bit more thoughtful. She also took is taking the assignment in a different direction, while still answering the questions, something the teacher could have done.

In the past, we have talked with each other, about the “why” my daughters were adopted, and the “how” the experiences were to us. I explained that the only difference between adoption and actual birthing to becoming a parent, is the physical process itself. Emotionally, the experiences are very similar.

It is because of those prior discussions, she has re-written her questions, so that she does not have to ask her parents anything about what it was like to be pregnant and experience childbirth, yet still explain what it was like to become parents. Because honestly, this type of assignment could trigger any number of issues emotionally for my daughters.

But my daughter will have answers to questions like “did you know your gender before you were born?” (we actually did not know if we were adopting a daughter or son until we were informed)or “how did your parents prepare for your arrival?” (we decorated the nursery and child-proofed the house just like everybody else, oh, we did have travel arrangements to make) or “what was that moment like when I was placed in your arms?” (an unbelievable sense of joy). Do you see how easy it is to ask a question, neutral to either biological parenting or adoption? My teenage daughter figured it out, why can’t a college educated teacher, or Ph. D’s in the curriculum department figure that out.

It is not about not realizing there is actual blood on the other side of the world. They both know that they have biological parents, somewhere. And when the time comes, I have promised them, that we would do a heritage trip, if they wished, to visit where they are from, and quite possibly, meet people who took care of them in the earliest of their days. And yes, if they desired to seek out their birth parents, I would help them.

You see? It is not the fact that their being adopted is the problem, it is that there are still to many who see this of having no value or importance, whether intentionally, or by ignorance. I have allowed them to ask as much as they want, learn as much as they want. But at no point, will I ever make them feel any less, just because they did not come from my blood. Make no mistake, my daughters are my world. And this world is a better place because they are in it. It does not matter how, but at least be aware there is more than one option.

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