Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

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.

Health Care Rights Question

When you fly on an airplane, it is possible to be removed from your flight for no reason (especially when a flight is overbooked). Hotel reservations may not always come through with the “suite” you thought you had reserved. Hell, I even had a cruise cancelled because the ship had been “chartered,” by someone clearly with enough money to make my anniversary cruise irrelevant. The truth is, these are all examples of “privileges.” The companies are private, they can do whatever they want, whether the optics result in bad PR. We have no rights when it comes to things we do.

Health care is treated that way also, and it should not. Health care for the last fifty plus years has been treated as a privilege, in spite of advocates calling for it to be a human “right.” Whether we refer to ourselves as “Americans” or those who stand behind religion, the majority of people in the United States, if they believe in their tenets of patriotism and faith, MUST believe health care is a right.

Over the years, I have done my share of slamming any entity that does not support health care for all, as a right. My favorite targets have been politicians and insurance companies. To be clear, the health system is not perfect either, especially when they do not make it accessible. And I am not just talking about a “denial” of service.

It is no secret, I have cardiac issues related to my cancer treatments thirty plus years ago. So, I see a cardiologist once every year. My appointment is made upon my departure from the current appointment. Bottom line, I expect to see my doctor the following year.

Things can happen. A family emergency. An illness. In the case of my first ever cardiologist (I have had several over the last thirteen years), they might even leave their practice. So, I can understand if something has to be changed, even with a year’s notice given.

The timeline. Appointment made in October of 2020 for October 20201. Robo call received on a Friday, confirming Tuesday morning appointment. Monday evening, received call from cardiologist office, appointment needs to be changed.

Ok. No problem. Like I said, things come up. I have no issue with that. I am totally understanding. I do not even care why. I just need to get it rescheduled.

“The next available we have is in January,” the scheduling person stated matter-of-factly and calmly.

I responded, “excuse me?” because I really doubted what I had heard. She repeated the next availability again.

I said, “but you guys are cancelling the appointment. Why am I being penalized with the next appointment three months away instead of being booked upon the doctors return from his two week leave? At least squeeze me in somewhere…it is just a follow up for crying out loud.”

“I can get you to see his PA (physician assistant) at the end of the month.” I have already expressed my objections, no disrespect to PA’s all around the globe, to seeing a PA. Doctors do not understand my particular medical issues, yet, I am to be scheduled with someone holding just a masters degree in medicine? Complicating this, I do live in a high tourist area of Florida, and within the next week, “snow bird”, travelers from up north will arrive for the winter, bogging down our health systems down here, extending times to see a doctor, ESPECIALLY A SPECIALIST.

But it makes me wonder, I remember a time, when you needed to see a doctor, whether it was primary care, or an orthopedist, or a cardiologist, you got in, fairly quickly, at the most, perhaps a two week wait when it came to a specialist. Given that the cardiac system is a crucial part of the body to care for, what is the logic, of rescheduling someone, with known cardiac issues, who was last seen a year prior, of pushing off that patient another three months instead of perhaps three weeks later?

I am open for answers. Is it something corporate? Are doctors limited, seeing only a certain number of patients, regardless of need? Have the doctors been removed totally from the scheduling process, with a pen pusher sitting by a phone, making the determination when a patient sees their doctor?

As I said in the beginning, it is one thing for services such as flying, travel, dining out, and such to make decisions that negatively impact customers. As private entities, that is their right to do so. That is their “privilege.” But health care is not a privilege. Patients needing care have rights, or at least we should. And the number one right, should be that to be seen in a timely fashion, even if it means squeezing someone in.

Post Navigation