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?