Paul's Heart

Life As A Dad, And A Survivor

17 Sep 2025

An Essay – A Hodgkin’s Hero


I write for a variety of resources and opportunities besides here on “Paul’s Heart.” Some make it to publication, and some do not. Regardless, if published or not, as soon as the decision has been made by the entity, I publish my work here on this page. This particular piece I wrote, was for a submission on “blood cancer heroes.” With September being “Blood Cancer Awareness” month, as well as “Hodgkin’s Lymphoma Awareness” month, I decided it was time to recognize a very important hero in the world of blood cancer, in particular, survivors. I try not to be cynical, but as time goes on, it is as hard today as it has been for decades, to give survivorship of cancer, as much of a spotlight, any spotlight, as the battle itself. My essay was on the role of one particular doctor, committed to finding answers and determining care needs for survivors of Hodgkin’s Lymphoma, something medicine really never paid attention to, because cancer survivors are not given anything other than a five year average of survival. If you have followed my page for any length of time, you know that many of us live much longer than that. And we do need help, which is where Dr. Oeffinger comes in. If anyone deserves to be recognized as a “blood cancer hero,” it should be him. The first part of this post will be the article I wrote, as it was submitted. The second part, will be “our” story. Alas, my essay was not chosen for that publication. Nonetheless, his story deserves to be told. So here, as was originally submitted, is…

Dr. Oeffinger – Hero Of The Long Term Blood Cancer Survivors

Dr. Kevin Oeffinger, MD has been involved in survivorship care of Hodgkin’s Lymphoma for over three decades from his beginning at the University of Texas, to his tenure heading Memorial Sloan Kettering Cancer Center’s LTFU (Long Term Follow Up) adult survivorship clinic, to his positions currently held at Duke University; Professor in the Department of Medicine, member of the Duke Cancer Institute, founding director of the DCI Center for Onco-Primary Care, and the DCI Supportive Care and Survivorship Center.  Dr. Oeffinger also has membership involvement with ASCO (American Society of Clinical Oncology), the American Cancer Society, and the American Academy of Family Physicians.  He is also an editor for the Journal of the National Cancer Institute.

Dr. Oeffinger has published and co-published countless medical journals in regard to late-developing side effects from cancer treatments promoting personalized health care between cancer specialists and primary care physicians.  He travels around the nation and the world educating medical professionals on long term follow up care so that the next generation of doctors, nurses, and technicians are prepared for the growing number of survivors living long after their cancer battles have ended.

Then there are his countless patients that Dr. Oeffinger has provided “long term survivorship care” for, including myself for over fifteen years of my 35 years survivorship of Hodgkin’s Lymphoma.  I first met Dr. Oeffinger following emergency open heart surgery for a near-fatal “widow maker” level heart blockage, caused by progressive damage from my radiation treatments eighteen years earlier.  My regular doctors had no idea what they were working with, nor did I think what was happening was related to my Hodgkin’s Lymphoma.  His knowledge and experience of late-developing side effects from treatments provides answers to symptoms other doctors who do not understand what they are looking at, explains to them why, shows them how, and then come up with a survivorship plan to deal with those late side effects. 

Dr. Oeffinger once said, “I have received SO MUCH MORE from the Hodgkin’s community than I have given.”  I have no idea how many patients that he has cared for, but I have personally met many of them, as there are many of us who have survived Hodgkin’s Lymphoma for decades now, thirty, forty, fifty years, long enough to develop these late effects, I can safely speak for every patient that Dr. Oeffinger has cared for, without his knowledge, care, and advocacy, we would not have endured all the extra years he has given us.  His care has given us SO MUCH MORE than we could ever give back to him or our survivor community.

Always humble, kind, caring, and unknown to his patients an emotional toll he is likely carrying himself, I am honored to submit Dr. Oeffinger as a blood cancer hero.

And that, was the essay that I submitted, a small snippet, truly not doing justice what Dr. Oeffinger means to me and so many others. I only touched on a few of his credentials. He is literally world famous with his experience when it comes to Hodgkin’s Lymphoma and survivorship. But it is his care and his empathy, and he instills that same skill into all who learn under him from his nurses to his students to his peers.

In 2008, I set out to find a doctor who would not only understand what had happened to me, and was happening to my body, caused by my Hodgkin’s treatments nearly twenty years earlier. It made no sense to me, as I had been “cured” that whole time. Why would the treatments be doing damage to me? Through a peer-to-peer email list serve I participated in, I found Dr. Oeffinger who was working at Memorial Sloan Kettering Cancer Center in Manhattan. While I had other cancer centers closer in proximity, it was Dr. Oeffinger who was always at the front of our discussions and who I wanted to see.

I remember all of my appointments with Dr. Oeffinger. My first appointment was very telling, the level of care I was about to receive. I had removed my shirt, and he began relating to his nurse, his observations. As I listened to him describe my physical shell, as if he were some sort of human x-ray machine, he pointed out all of the muscle loss from my upper torso, damage from the extreme high dose radiation therapy I had undergone in 1989. He would explain a “pencil neck” and drooping appearance with my neck, and muscle loss in my shoulders that resulted in one shoulder hanging lower than the other. He was already aware of the damage to my heart prior to the appointment, but now he was getting an even clearer picture of what he would deal with. He reviewed the chemotherapy regimen I also underwent back in 1989, and then, with his knowledge and experience, he was able to come up with a surveillance or management plan for me.

Now if you notice something about that last sentence, “surveillance or management,” nothing is said about “cure” or as he put it, “we can’t reverse, stop, or undo what is happening to you, but we can do all that we can to slow the process down.” That was sobering. I know in the beginning, I did not comprehend exactly what that meant. I had just gone through an emergency double bypass because of my radiation therapy. I should have been good. I beat my cancer. I survived my heart surgery. On with my life! Right? Riiiigghhht?

Dr. Oeffinger continued, “in a perfect world, I would be able to order a full-body scan, to see everything that your body is dealing with, but as of now, that is not available.” Over the next couple of years, he would refer me to several, and I do mean several specialists who understand the impact of late side effects from the high dose radiation, and highly toxic chemotherapy that was used to treat my Hodgkin’s Lymphoma. Gastrointestinal, cardiology, pulmonary, cardio vascular, physiatry, psychology, endocrinology, and I am sure that I am missing a few, are all systems of my body impacted from my treatments. My body was now being watched for potential new developing cancers (I currently am at risk for esophogeal and lung cancer), as well as other potential events.

One of those such events, was a middle-of-the-night ambulance ride to the ER, with aspiration pneumonia and highly septic, my cancer history a contributing factor. And right at the beginning of the Covid pandemic, I would have to undergo three urgent surgeries, two more heart (a stent and a valve) and a carotid artery, all having reached a point of needing to be fixed. Treating or repairing a long term survivor exposed to the therapies like I was, is not a simple thing to do, with the procedures coming with their own risks themselves, which is what makes it critical, that I deal with doctors who understand my medical history and “why?”

While Dr. Oeffinger did not do those surgeries, he was there with me for each one. And while I cannot speak for his other patients, I would bet anything, he was there for all of them as well. In 2017, he even made a phone call to check up on me, after my area was smashed by Hurricane Irma. Long story short, Dr. Oeffinger truly cares about his patients.

I was told by another fellow survivor that I had no chance of getting to see him, because he was either too busy, not currently taking any patients, or whatever. To be honest, I have no idea what made that first visit happen with Dr. Oeffinger, but it did happen. He gave me this to look forward to, back then a 42-year old father of two daughters who had no idea what was happening to their Father, “it’s my goal, that we get you to watch your daughters grow, graduate, go to college, get married, and some day, make you a grandfather.” And I never looked back in my survivorship care, only forward to every milestone that I have gotten to witness since. I have had many severe health events pop up, and it was the knowledge he shared, that put me in the right direction to get the proper help, and to see another tomorrow. I am sixty percent of the way toward our goals with another huge milestone coming at the end of the year. And that makes Dr. Oeffinger a hero to me.

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01 Sep 2025

Another Year, Another September


September is a busy month for raising awareness of certain cancers; blood cancer, ovarian cancer, prostate cancer, thyroid cancer, leukemia and lymphomas – often referred to as “childhood cancer” though clearly strike at any age.

If you have followed this page, followed me even before I began “Paul’s Heart,” I have been involved with the world of cancer over 36 years as a patient, survivor, and advocate. I was diagnosed with Hodgkin’s Lymphoma (actually called Hodgkin’s Disease) back in 1988. I was treated with levels of radation therapy and a chemotherapy cocktail I was not expected to survive, let alone barely tolerate.

Today, I deal with late side effects from both of those treatment regimens that were used to save my life, creating situations almost as fatal as the cancer itself. If you look at the list of “I know”s pictured above, I experience each and every one of them to this day, thirty-six years later. In fact, just today, I learned of a friend who passed from a different cancer, not even a year after diagnosis.

I continue to write, record TikToks and YouTube videos, give speeches, and my most important role as a survivor, advocate and be a voice for others who feel voiceless or without knowledge because it has been the only way for me to give back. My body is so damage from those treatments, I cannot give blood or donate my organs. The only way I can help others is with my experiences. And it is my plan to continue to do so, always with the mentality “if my posts help just one”, though I know my words have reached so many more, until I can do it no more.

I am at the point now, approaching a major milestone, the age of 60 at the end of the year, something I definitely never thought I would see. My survivor’s guilt never takes a break as I say goodbye to one survivor after another, from the same cancer as me, either from the cancer, or the late effects. And even harder for me to deal with, outliving those in my life who have not had to deal with health adversities, something I struggle with constantly.

If I can attribute anything to my longevity, and though they were not yet born when I dealt with my Hodgkin’s, my daughters were there, and have been there, with every health issue from my treatments that I have faced, my inspiration to keep fighting. Yes I know, I cannot control when my body has had enough, as evident by my friends and fellow survivors before me, but there are so many more milestones I want with them, and that definitely drives me.

To my fellow survivors, celebrate this awareness. Any of us who have taken on cancer, knows how hard it was to get through. And for those who are no longer here, you are definitely not forgotten.

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18 Aug 2025

Which Is More Upsetting?


(image courtesy of Harvest.org)

I want to run something by you. I do not normally do this, but I want to see your reaction. If you follow “Paul’s Heart”, you know I have a long list of health issues related to my treatments for Hodgkin’s Lymphoma over 35 years ago. These health issues continue to progressively get worse, and yes, some new ones even develop. On a recent visit with one of my doctors, as my cardiac concerns have once again increased, a new prescription was ordered. The drug is particularly intended to deal with congestive heart failure, which I was diagnosed with several years ago. The cost for the prescription for a 90-day supply as I will be on it long-term? With insurance, $863!

WHAT THE SERIOUS FUCK! ARE YOU FUCKING KIDDING ME? THAT IS ALMOST AS MUCH AS I PAY FOR THE INSURANCE THAT ALLOWS ME TO SEE THE FUCKING CARDIOLOGIST THAT I DO!

So, the litmus test. Of course you know I very rarely if ever use curse words in my post unless I am quoting someone else. But seriously, which upsets you more right now, my choice of language? Or the situation of unaffordability of a life-saving drug for me?

The high cost of prescription drugs is nothing new. Big Pharm annually makes a huge haul at the patients’ expense. As patients, we are at their mercy if we want any chance of getting better. The thing that makes me go “hmmmmm” however, is that thirty-six years ago, when I was treated for Hodgkin’s Lymphoma, my health insurance covered more, cost less, and I definitely do not remember not being able to afford anything the doctor had ordered, especially my chemotherapy.

I am just a little guy, and I do not want to put a bullseye on my back, so I will not mention the name of the drug, but let’s just say, it is new enough that there is no generic drug available, which means the Big Pharm company can charge as much as it wants to, and does, at least here in the United States. Last year, in an effort to provide some help for my congestive heart failure, another drug had been prescribed, and just as this current order, was even more expensive to me.

So I do what I do best, research. I go to the various drug discount web sites, but at best I could only get the price down by $150, the drug, along with all of the other prescriptions I take, still remained unaffordable. And then, just as I did last year, I reached out to the Big Pharm company, threw myself at their mercy, for their benevolence, in hopes they could help me afford their drug. Nope.

While my cost with insurance for this drug is $863, according to a Reuters report, the cost in other countries such as Australia, Japan, and Sweden are all under $40 for a 30-day supply for the same drug and Canada’s cost is $60. How is this possible? A drug company from the United States selling its drug to other countries with it costing me 2100% more.

So I ask you, which upsets you more, this price gouging or the fact that I used naughty words in this post? We should all be outraged by this. And while this is capatalism at its finest, greed at all cost and at the expense of the most vulnerable, there clearly will not be any help from our government as long as lobbyists of Big Pharm are able to do what they do. And to be clear, it has not mattered who has been president or which party. Big Pharm and Big Insurance do not want their profits reduced and their money in Washington talks louder than the cries of those who cannot afford their medicines.

There are those who would try to defend Big Pharm, that the need to take advantage of not having generics available to keep prices high is to encourage and enable future research. Here comes another bad word. BULLSHIT! Big Pharm CEO’s are making more now than ever, and Big Insurance is no better. And besides, what good is any research if the treatments you make are out of reach financially to the patients who need the medicines.

Again, to be clear, this has been the situation no matter which president has been in office. But it is the current president’s attempt to make us think he is going to make the pricing better for everyone, that just does not make any sense. In a letter to 17 major companies, he wants drug prices slashed 1500% (which is mathematically impossible), and to do so, has threatened a 250% tarriff on pharmacueticals, which we know will get paid by the patients. And his demands are to make companies raise their prices for that same drug I need in other countries, not lower them here. We are supposed to believe if we are making other countries pay higher, then somehow that makes it fair to us. And if you think generics will help impact the costs with this type of action, guess again. Generic drugs will not only go up, but likely face shortages, again, to keep the profits margins for Big Pharm. We should begin to see the impact from the 15% tarriffs on the EU soon, and any pricing increases which would prove what will happen should a 250% tarriff be implemented.

The solution for me would be simple, find a way to import the drug from Canada, or Australia, but then our country does its best to discourage this by claiming the drugs could be unsafe, ineffective, or improperly marketed. I am not at the desperate point in my health yet, but if the time came, if my country were not going to help me, I most certainly would trust Canada or Australia. What would be my alternative?

I have found what I need in Canada, and with the assistance of some fellow survivors, I have figured out “how.” Now, the race against the clock and the 250% tarrif set to take effect on August 29th. The difference between $102 for the actual cost, and then me, not the country shipped from, not the manufacturer, ME!, if I want my delivery I will have to pay $257 in the tarrif. Yeah, that will teach Big Pharm a lesson. And the lesson is this, instead of Big Pharm making the profit off of a patient, now it will be my own government. But, by me paying less for the prescription, that actually does take away the profit from Big Pharm, in theory, forcing them to raise their prices internationally if they want to compete.

I try to keep politics off of this page at all costs. But the costs of prescription meds are now becoming a matter of life and death. Two years in a row, I have been prescribed a drug for my congestive heart failure, to attempt to help restore some of my heart function, and I cannot afford them, and it will be years before an affordable generic comes out (which of course will lower the cost of the original drug – see? They can do it if they want to!). All I can do at this point is what I have been doing, managing with diet, and any exercises that my body will allow me to do. Tarrif or not, if I can get the prescription cheaper than here, I will do what I have to.

Yes, I am fucking frustrated. But don’t be upset how I express that frustration, rather, be upset as to the reason.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment

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