Paul's Heart

Been A Long Time

The last time I felt like this, was back in 1991. I was approaching the first anniversary of my remission date for Hodgkin’s Lymphoma. Having faced a situation that easily could have taken my life instead, I realized that at the young age of 26, I should be better prepared in life. And though I was in remission, I could not help but think, this could have been a disaster for my family with me not having life insurance and not a penny to my name.

I called multiple agents to inquire about life insurance, which would be used to help with burial costs. Each and every one told me the same thing. “You need to be in remission at least five years. Right now, you are just too much of a risk.” This gave me a feeling as if I had been punched in the gut. Is this what my doctor meant when he told me at five years I could consider myself “cured?” And what did these pen-pushers mean “too much of a risk?” I beat my cancer! I was going to live a long time. Spoiler alert…

And so, since we did not have social media back then, desperate and angry to meet this need, I typed on a typewriter, a Letter to the Editor of our local newspaper (you know, the flat pieces of tree left on your doorstep every morning with the day before’s news). In that letter, I called out every insurance company that had turned me down, and challenged anyone not named, to step up, and sell me some life insurance. I was going to live a long time, and surely someone would want to earn money off of my money. As you can see from my front page, I am approaching my 33rd year in remission. 33 years, someone could be making money off of my investment.

A few weeks later, I was contacted by an agent, who had a thought on how to get me life insurance. A short time after, I purchased that policy, which I still have today. It is a small amount, but enough to cover my family’s needs when the times comes.

I wrote this post last night, and felt I wanted to sit on it because of the emotions I was experiencing. I found myself with the same feeling of abandonment that I was experiencing over thirty years ago. Last night, and still today, I am much more emotional about how I feel.

I am an advocate for many things, patient rights, adoption, survivorship, etc. I believe that any situation can be worked out, that it is just a matter of the right people working on it together. When it comes to my advocacy for cancer survivors, my efforts include finding information and resources, providing encouragement, and not stopping until everyone has the same level of care that has gotten me through to this day. This means that I do a lot of research. I participate in conferences, though because of Covid risk concerns for me personally, I now participate only via Zoom or other video means.

Over the years, I have expressed my frustrations time and time again, how disappointing it is, that medicine did not prepare for the fact, that cancer patients would live longer than the five year bench mark statistic that patients are given as a survival goal. Many of us went through life actually thinking, “okay, if I don’t die in year two, then by year five, my time will come soon after,” because no one talks about year six and on. But when it came to Hodgkin’s Lymphoma, the success rate for remission was one of the highest for a cancer. And with the invention of the internet and social media, we would soon discover, survivors would live many years after that “five year mark,” decades longer in fact.

And while surviving 20, 30, 40, 50, and yes, I am even aware of someone surviving 60 years from Hodgkin’s Lymphoma, for many, survivorship came with a trade-off. The problem? Nobody saw the potential problems coming. Or at least, was not doing anything or making anyone aware of the problem. Late term side effects. To put it in to perspective, think of any of the nuclear power plant emergencies that you have heard about over your lifetime. You heard stories about people developing issues long after the nuclear crisis, sometimes decades later, and the areas involved are still “hot.”

Well, for cancer patients, the situation is similar. For many, later on in their lives, health issues develop, related to their experiences with either chemotherapy or radiation therapy. These late side effects can be mild, or as in my case, life threatening. The problem was, there was no plan to deal with any of these issues. Hell, there was no knowledge of need to even look for these issues.

Back in 2008, when I got rudely introduced into this world of cancer survivorship issues, I was already aware of others, who had already had experiences. There were frustrations with doctors baffled by the mysterious symptoms that did not meet the demographics of the patient, for example, cardiac issues on a young, fit patient. And once discovered, doctors soon found other issues during corrective actions, complications during the procedures and recoveries not experienced by uncompromised patients who did not have the toxic exposures that cancer patients had. The problem, survivorship care was never taught in med school. This type of care was flying by the seat of its pants.

There are pioneers in cancer survivorship that have come along, individuals who saw something, and chose to make a difference. Over the years, I have been blessed to have been cared for by two of those doctors. But in a country alone of over 330,000,000 million people, society fell way short of meeting the need to care for us survivors. Since my initial surgery back in 2008, many more “survivorship clinics” have popped up, but we are still way short for the need. And the doctors that I referred to? They are still at it, trying to bring awareness to the needs of cancer survivors. Today, efforts are being made to bring awareness to primary care givers to help in this surveillance, the needs, the why’s, and the what to do about them. But the doctor’s attentions, are needed by the patients.

So yesterday, I attended yet another Zoom session, this one linked to cancer and heart health, which clearly I thought would be of interest to me. I had one question that I felt was important, and necessary, and might just make a difference. So I submitted the question right at the beginning to make sure once the question and answer period began, hopefully my question would get asked.

“I am a 30 year plus survivor of Hodgkin’s survivor, exposed to 4000 grays of radiation, and Adriamycin and Bleomycin. Naturally I have multiple cardiac issues. Does healthy diet and exercise improve the long term side effects of those toxicities, have no effect, or actually contribute to more progression of the damage? 2nd part, is there anything that can be done to reverse the cardiotoxicity of the chemo and rads, that would get a survivor to the level needed for a heart transplant, as opposed to band-aid repairs such as stents, valves, and bypasses?”

Now in fairness, I was fairly sure of the answers already. Because there are not any answers, not by this type of organization. There may be research being done, but not popularly being discussed or shared. While I am not a doctor, in my experiences over the last two decades, and of all the survivors I know who fall into the category of needing a heart transplant, I know of none. Because at least to my knowledge, none exist.

While the moderator of this Zoom and the guest speaker did provide valuable information and statistics, for general heart health and concerns, even with a small amount of follow up questions from viewers, plenty of time to ask questions, my type of question, was ducked, as always. The only part of my question that was answered, was that “issues could develop later in life, not just in the immediate sense.” And then the kicker came, as the guest speaker said that it was our “right to advocate for ourselves and for our care if we know that we have been exposed to such cardiotoxicity.”

Now I was pissed. NO! IT SHOULD NOT BE UP TO US TO FIGHT TO BE CARED FOR! MEDICINE SHOULD KNOW THESE PROBLEMS EXIST AND PATIENTS NEED CARE! We should not have to fight for this. YOUR ORGANIZATION IS ONE THAT HAS THE ABILITY TO BRING THIS ISSUE TO LIGHT! BUT YOU AREN’T DOING IT!

So, like I did in 1991, it is time to call people out. It is not enough to just research cures for cancer. But if you are going to cure us, you have to know that there is likely going to be health issues later down the line, know what these issues might be, when they could occur, and what needs to be done about them and how. Here is a fact, IT IS GOING TO HAPPEN! It should not come down to a trade off – does a person want to be cured of their cancer and just accept the health issues that come after, or accept a certain death, refusing treatment.

In elementary school, I learned of the American Cancer Society. We had annual fundraisers to support cancer research. Since then, and of course because of my cancer history, I have learned of many more organizations involved in cancer research and advocacy, even specifically to Lymphoma: The Leukemia & Lymphoma Society and The Lymphoma Research Foundation. There are plenty more organizations such as the National Coalition For Cancer Survivorship, which has cancer survivorship in its freaking name. I have approached each and every one of these organizations and more, at the very minimum for their input on long term cancer survivors. Crickets.

And sure, the NCI and NIH, both governmental agencies, and certain universities and some cancer hospitals have documentation on late effect issues, they receive no attention except from advocates like me who go looking for information. The list of organizations go on and on.

The media does not get off the hook either. Yes, it is great to see all the wonderful stories of people who have beat cancer on news bites or documentaries. But there is a whole society of people, cancer survivors who have been, and are being forgotten for whatever reason; apathy, lack of resources, lack of information, whatever the excuse. Will anyone step up and give decades long survivors with major health issues from their cancer treatments the help and the research we need? We need more than just the few that are doing all they can. It is unforgivable that we are being ignored or neglected.

There is one bright spot in all this. And it comes from the old adage, “if you want something done, you have to do it yourself.” Several years ago, long term survivors got together and created the first ever organization dedicated and committed to long term survivors of Hodgkin’s Lymphoma. It is called Hodgkin’s International, and it does just that, reaches internationally across several continents. Resources and information, support, survivor stories and more, can be found through this organization which hopefully help a long term surviving patient of Hodgkin’s, advocate for their own care. It is inexcusable that the ACS, the LLS, the LRF, and more have not taken more of a lead with all of their resources.

But with more cancers being cured, this likely also means that survivors of other cancers will live longer as well. And since late effects likely have not been studied for them, it has to be assumed that some day, those survivors of other cancers will experience what we Hodgkin’s survivors have with late effects.

It should not be up to the survivors to step up their game. We know what is wrong with us. We know the help that we need. Too many just cannot get the help or attention that is necessary. Will anyone step up? Anyone?

Get The Picture?

Do you remember the television commercial that tried to demonstrate the use of drugs and the effect on your brain? You know the one, with the egg and the frying pan. The egg represented the brain, and once cooked, that was the brain “on drugs.” I am going to demonstrate a different situation, using a similar method, but without eggs as they are too expensive to waste.

As I have often mentioned, I had my aortic valve replace, actually, that is not a correct way to state that.

I had an artificial aortic valve (replica pictured in my hand) inserted into my defective aortic valve. The reason that this needed to be done? Exposure to a ridiculously high amount of ionized radiation to treat my Hodgkin’s Lymphoma decades ago, caused progressive damage to various areas of my heart, the aortic valve included. Let me tell you how important that aortic valve is to the heart, besides the simple fact that it plays a major role in blood flow through the heart. But have a problem with the aortic valve, and you can be lucky to walk ten feet without being winded, gasping for air.

I unfortunately do not have a picture of what my aortic valve looked like prior to the surgery. I have some very cool looking scan photos that make absolutely no sense to me, with all kinds of notations how bad it was, but I cannot tell what I am even looking at. But it was bad. So, let me show you a different picture.

This is a severely damaged aortic valve. This came from a Zoom session that I just participated in, on aortic valve surgery presented by Penn Medicine and Heartvalvesurgery.com . In this particular photo, the aortic valve has damage from Rheumatic fever. If you are unfamiliar with Rheumatic fever, it is something that can develop fighting an infection, such as Strep Throat. I am pretty sure you have heard of that before, and how contagious it is. If you are the person with this pictured aortic valve, I am pretty sure life is not fun at this point, especially trying to breathe.

When I heard this explained during this session, I immediately flashed back in my memory, back before I became aware of all of my health issues, my only concern was that not having a spleen, I was extra susceptible to catching things, like the flu, pneumonia, strep throat, and that these things could kill me. But one incident, a co-worker came to work, with Strep throat. She bragged about having the highly contagious infection. When I informed my supervisor “either she goes home or I go home,” I, the healthy one, was the one who ended up going home.

Though I honestly thought it was from the sickness itself that would kill me, turns out, that is not the only risk. The damage that an infection inflicts on the heart is shocking. Because we do not really think about it. We get sick. We take some medicine. We move on. But all the while, over the years, damage to the heart occurs with each infection.

One other thing that I learned during the Zoom, was the dangers of infections on the replacement valves, seemingly more susceptible to the effects of the infections.

So what inspired this post today? Covid-19. We are at a point, where even the government is ready to surrender, remove the amount of attention to precautions and care, and just accept that Covid-19 is here to stay. And just like other diseases, will still have the ability to kill patients, just in a larger number.

But the fact is, Covid-19 wreaks much more havoc on the heart. My cardiologist, who I consider one of the best, did not mince words. “Covid-19 will kill you,” referring specifically to me. Now, it may have seemed like hyperbole by some at the time, just trying to scare me, but I never doubted by doctor’s sincerity. After all, he has boldly gone where no man had gone before (okay, a couple of other times before – a double bypass and a stent).

After seeing the photo slide of the damaged aortic valve from Rheumatic fever, and the listing of other infections, I am now totally convinced my cardiologist is correct in his warning.

I want to be clear. I am not living in fear. I am doing everything I want to do, yes, while wearing a mask and avoiding crowds. I have issues maintaining coverage from the vaccine, so as I wait for my next dose (I have gotten all of them), at this point, I am considered unvaccinated. But the reality is this. Covid-19 is still around, a lot, and is still killing people, so far, two people I knew this year alone.

Clearly, it is not just Covid-19 that needs to be avoided for the sake of the heart. If the picture of the damaged valve is any indication, we all really need to do better at avoiding getting sick in the first place, from any infection.

Enough Is Enough

There were a couple events that occurred recently, which is prompting this post. Actually, I have written about the issue many times before. But this time, I am going to hand “spoon feed” you the information that will hopefully and finally convince you, protect you, and perhaps, save your life. If there is one post that I want SHARED SHARED SHARED, this will be the one.

There are many things that an oncologist will tell a cancer patient; survival chances for the particular cancer, options for treatments, and what your immediate future will entail. Hopefully, the cancer patient will hear the words, “you are in remission.” And the final thing that a cancer patient will “hear”, and that is in quotation marks on purpose, “you are considered ‘cured’ after five years without a relapse,” which a cancer patient hears as, “I am done with cancer.”

And this is where, even after my nearly 33 years as a survivor of Hodgkin’s Lymphoma, nearly all oncologists leave out the most important thing to tell a cancer patient. Although you may be in remission, or “cured,” a patient, or survivor, is never really done with cancer. And this is where too many oncologists fail their patients. The truth is, a patient, or survivor, even if considered “cured” after five years, still needs to be followed up for the possibility of the development of late term side effects from the treatments.

Please, read this statement very carefully. The one thing that every cancer patient cannot wait to happen, is to be “done” with cancer, put it behind them, never to think about again. It is understandable that we want to make it a goal to never set foot in a doctor’s office ever again, like other non-cancer people get to live their lives. And who can blame any of us for feeling this way? Going through a cancer experience sucks. But you know what sucks as bad, if not worse? Learning that while you were busy going through life, acting as if cancer had never happened, damage caused by the treatments that gave you that cure, have the potential to progressively develop serious health issues, many undetected, until it is too late. This is what happened in my case, and many other survivors, some who already knew their situations, and others, who never saw it coming, sometime with fatal results.

Listen, it is not a bad thing, to be followed up by a doctor. It gives early detection for something that at one time or another, had been unknown. For instance, those of us treated in the 50’s, 60’s, 70’s, and 80’s were literally experimented on with our treatments for Hodgkin’s Lymphoma. There were no studies on long term side effects. All that mattered was the current treatments worked for remission, no matter the physical cost.

Look carefully at this photo. It is the actual record from my radiation therapy back in 1989. In particular, look at “item 2, ” where it states “medicine is not an exact science and that no one can prevent all of the acute, sub acute, and chronic changes or injuries…” And then just below, it lists other potential complications: muscle, bone, neck, pericarditis (an inflammation of the heart) or other infection. That’s it. Why is that? Is it possible that it was just because, cancer patients were not expected to last longer than five years, even if in remission? Why is that? Did no one think to study the late effects of what exposures to high dose radiation therapies and chemotherapies that could develop, should someone actually live past the five year mark, spoiler alert, there are thousands of us living decades longer?

Thanks to a few pioneers in long term cancer survivorship studies, some of us have finally gotten the help we need. But the majority of survivors do not. They do not live near a major cancer network that might actually have a survivorship clinic. Insurance may not cover the unusual and unexplained health maladies being dealt with. And other than some peer to peer social media support, there really is nowhere for a long term survivor to turn to, if they can even figure out, that their health problems are even remotely related to their cancer treatments.

Which is what makes it so maddening to me, that just as a friend wants to, and rightly so, celebrate reaching their five year milestone, here I am unable to simply just say, “that’s great.” I have to follow my congratulations with “but…”. If I am going to rain on someone’s parade, I am going to back up and present what I know and have learned. One of those resources comes from the Children’s Oncology Group, which is committed to childhood cancers. But here is why this resource is important to you, because it has information that does not matter if you had a childhood cancer. Because the information inside the guidelines contains therapies often used with other adult cancers. And it demonstrates the necessity of having to be looked at, long after that magical five year mark.

This is the link to the survivorship guidelines: http://www.survivorshipguidelines.org/ . It lists information from the modes of treatment and the different medicines, information to gather to make better surveillance plans, diet issues, fitness issues, educational, emotional, affording health care, long term survivorship recommendations, dental, cardiac, endocrine, gastrointestinal, musculoskeletal, neurological, pulmonary, reproductive, sensory, other cancers, and urinary. Go back, and look at the picture of the potential concerns I was warned about. And if you have followed “Paul’s Heart” long enough, you know the extensive health issues I have to deal with, not just the few conditions listed on my picture. Yet this list is what is currently exists. And do not be fooled, Hodgkin’s may be a “childhood cancer” per se, but you can still be diagnosed with it, like I was at age 22, or in your 70’s. The concerns with the treatments will be the same.

I provided the link for a reason. The actual guide of treatments is over 200 pages long. If you do not have access to a survivorship clinic, and you are left to advocate for yourself with your primary care, help your doctor out. As I am about to show you, simply note the pages that affect you to spare your doctor’s time. Let them know, what needs to be looked at. They can and should be able to determine your care from there.

http://www.survivorshipguidelines.org/pdf/2018/COG_LTFU_Guidelines_v5.pdf . This is the link to the full document. The first few pages list the panel of experts that were included in creating these guidelines, and how to use these guidelines. Starting on page 31, references ANY cancer experience, and yes, that means not just childhood cancers. Concerns of psychological and quality of life concerns are listed here. On page 36, sleep issues and fatigue concerns are mentioned. The guidelines address if you were exposed to any blood products during your treatments on page 38. Then comes the big info starting on page 41, chemotherapy issues and continues through page 82. I would like to share just one page in particular as it applies to me, and perhaps those with different cancers, but got this same particular drug.

I received the chemotherapy drug, Adriamycin, listed on this chart as Doxorubicin. We cancer patients and survivors refer to this drug as the “red devil,” and for good reason. Reflect back on that page near the top with my possible risks. Do you see the difference between the years1988 and 2023? Like I said, this drug is not just used to treat childhood cancers, but adults as well with cancers such as breast cancer and stomach cancer and more, and is still one of the main drugs used today. But the toll it can take on the cardiac system, if not monitored closely, literally, can be fatal. This information matters to you as well! Allow me to show you another.

This is another drug I was given, and is still used today, Bleomycin. This has a huge impact on the lungs. Another?

Anyone treated long term, with high dose steroids, including cancer patients, run the risks listed above. One final slide, and I think you will get the idea.

This page demonstrates the potential risks for radiation, and clearly is an issue with the higher doses used decades ago as was with my case. I just selected the cardiac page concerns, but I promise you, there are many more pages including for the lung, thyroid, and more. But again, reflect back to that page at the top, only a few concerns were listed, and there was no plan to follow me up after five years. Thirteen years later, eighteen years from my remission, I was diagnosed with a fatal issue, a blocked LAD, main artery to the heart. Blocked does not really describe the situation. Radiation, which remains in my body today, continued to scar that artery, until it was almost completely closed off. Again, NO ONE WAS MONITORING ME. Since that surgery, I have had two more heart surgeries, another main artery, and my aortic valve, all to the point, it needed to be done. They know this concern now.

So, why are not enough doctors and oncologists informing their patients, that while, YES, celebrate the five year mark, but we are still going to have to watch you, the rest of your life for the possibilities that these things could develop. Not definitely, but could. And it would be far better to catch the issues early on, instead of waiting until someone is ready to drop dead like in my case.

Please, I encourage you. Go through the rest of this guideline, save the pages that pertain to you. And if you cannot see a long term survivor clinic, take these pages to your family doctor or general practitioner. And if for some reason they will not hear your concerns, find another. These issues and concerns are very real, and I can literally back them up with the voices of over 1,000+ survivors who I know have gone or are going through these similar issues.

And finally, as I said in the beginning, share this post. Share it often. While there are many cancer conferences and other doctor gatherings, these concerns are still not being discussed enough. The medical community is not educated in these issues, how to look for them, or how to handle them. My fellow survivors and I are doing all we can, with just our small number, to inform everyone that we can. We even have an organization called Hodgkin’s International to help raise these concerns for those that look for the information. But as I said, this information can be helpful to cancer patients of all ages, regardless of what cancer you face.

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