Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “cancer”

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.

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.

The Time To Straighten Out Health Care Is Now!


I normally do not discuss politics or religion on this blog.  But when it comes to the topic of health care, there is no avoiding bringing up politics.

First, I want to say that I am completely neutral when it comes to who gets the blame for the situation we are in today in regard to health care.

We all knew, that the Affordable Care Act was not going to be the “cure all” for what ails health care in the United States.  But from the time that it was signed into law, in spite of knowing the misgivings, failures of certain aspects (I refused to say the entire act was a failure because it was not), or dire predictions, Democrats did absolutely nothing to make the act more stable, reign in premium increases, make health care affordable, and reach even more people.  I really do not understand how Democrats, seeing that the Republican Party’s sole existence for the last seven years was to repeal the ACA, did nothing at all.  Whatever the reason, Democrats did nothing to improve on the ACA.

But what we witnessed by the Republican Party’s effort to “repeal and replace,” not only amazed us with disbelief, but shocked most with just how much would be taken away from us, not only just in the repeal phase, but what would be left with the replacement.  For seven years, the Republicans only planned to repeal.  They had NOTHING to replace it with.  And there were no intentions to replacing the ACA.  It should also be noted that Senator Marco Rubio executed a major effort against the “risk corridor”, in which would have actually protected insurance companies from losing their shirts ending up with too many sick people and not enough money brought it from the premiums.  Because of Rubio’s efforts and others, insurance companies were paid less than 15% of what they had been hoping for from the federal government.  And for the last two years, Republican candidates promised their constituents that the ACA would be repealed and replaced with something better.  And yet, there still was no replacement.  Seeing the constituents get nervous, ideas developed.  But now, in a Republican controlled House, a Republican controlled Senate, and a Republican president, the conditions were perfect for the repeal and replacement of the ACA, with the American Health Care Act.  There was one problem.  Some candidates only cared that the ACA got repealed because that is what they campaigned on.  Other candidates gave their constituents their word that they would be no worse off with the new health care proposal.  Then we saw how our government operated.  Meetings were held behind closed doors to “encourage” and “entice” representatives to vote for the AHCA, if only for party loyalty.  In fact, many were threatened that their lack of loyalty would cost them support in their upcoming elections.

Do you notice something so far?  Not one conversation about health care.  Not one word about increasing costs.  Not one word about receiving care that is needed.  No, all that seemed to matter is party loyalty and re-elections.  We, whether Democratic, Republican, or Independent citizens, now know what we are worth.

We need to understand this simple fact.  One of the major issues of the ACA is the skyrocketing insurance premiums and deductibles.  Why are so many of us shocked by this?  But the truth is, even before the ACA, insurance rates were skyrocketing.  The ACA managed to slow those rate climbs a little bit, but of course, are now back to ridiculous percentages of increases.  And the AHCA did not address this issue either.  And why?

The insurance industry cries that it loses money.  Yet, its CEO’s earn 7-8 figure salaries and bonuses.  The insurance industry lobbies nearly a quarter of a billion dollars, putting money in the pockets of our representatives, IN BOTH PARTIES – NOT JUST ONE PARTY, in order to guarantee their profitability.  And of course, the huge tax cuts giing $600 billion to the top 2%.  Imagine the millions, no, billions of dollars going into pockets of CEO’s or government representatives that could drastically reduce our rates.

Look, it is simple.  Insurance companies are not in business to spend money on claims.  Therefore, they can only make money on healthy people.  And most healthy people feel that they do not need health insurance, so, they will not purchase it.  That means, the company that does not want to spend money, must spend money.  On just my case file alone, more than $2,000,000 has been paid for all the things that had to be done to save my life from treatment of Hodgkin’s Lymphoma, to side effects caused by the treatments such as heart damage and sepsis.  Clearly I am a liability for insurance companies, but that does not mean that I do not deserve an opportunity to afford health care.  And without the ACA, I would be denied any further insurance, as well as exceeded any lifetime maximum.  Imagine, not being able to get medical care anymore, because enough money was spent on me by the age of 42.  If I died because of that, too bad, luck of the draw.

And I call bullshit on most of the companies who bailed on the marketplace.  I am sure that some bailed because of the short comings of the “risk corridor” legislation issue, but the majority bailed because the ACA cut into their profit margin.  And some may have even threatened or followed through on leaving the marketplace for political reasons (hiding behind “loss” of course), such as being denied the opportunity to merge with other insurance companies.

Big Pharmacy is another culprit with big time lobbying and CEO pay and bonuses.  And there is no reason that medicines cannot be affordable here as the same drugs are in other countries.

Hospitals.  Remember when you used to get an itemized bill?  You could actually see that you were charged $100 per day for a pillow on your hospital bed.  You could see the Tylenol pill you were given was $5.  Now, just a flat bill, no breakdown, gets sent to the insurance company.

These are the big 3 violators of increasing health costs as far as I am concerned.  Of course the insurance industry and Big Pharm were happy with the potential of the AHCA, they were not being blamed.

But just as the ACA appeared to be rushed through the process to the objections of one party, so was the AHCA to the objections of the other party.  Again, neither side of our government really giving a shit about us, the constituents, the patients.  And we, should be paying attention to who else did not approve of the new health care plan… doctors, nurses, you know, the ones in charge of saving our lives.

As long as greed is the driving factor in health care, we, the greatest nation in the world, still will not provide insurance or access for everyone to health care, while nearly all of the other industrialized nations do have universal health care.  Oh sure, Canada is the easy one to point out about dissatisfaction saying citizens are not happy with it.  But just as there are disagreements in our country over health care, I am certain, so is Canada.  Okay, unhappy with Canada as the example?  It is time to start looking at other countries who use universal health care and see what they are doing right.  I will bet they are not worried about Wall Street and greedy insurance companies.

Why am I so fired up over health care?  Because ever since the day I heard the phrase “you have cancer,” I found myself kicking myself in the ass, for letting an insurance policy lapse that my parents had in place for me as a teenager.  Like many Americans today, I was healthy.  Why would I throw money away to something I did not or would not need?  And this is why the health insurance cannot make any money, and why the government gets so much support from younger voters in support of efforts to take away essential medical benefits such as ambulatory services, emergency services, hospitalization, maternity, mental health and substance abuse, prescriptions, physical therapy, lab services, pediatric care including oral and vision, and preventative and wellness.  They are young and healthy and believe their invincibility does not concern them with health care.

I have worked nearly my entire adult life.  I have paid for my health insurance, when I had it.  You see, prior to the ACA, it was legal to discriminate against people with pre-existing conditions.  On that issue alone, I voted against every candidate who campaigned on repealing the ACA.  From the moment I was diagnosed, I was discriminated against in various forms from insurance to employment.  And having developed issues from the treatments used to cure me, I find myself with more than a dozen “pre existing” conditions.

High risk pools are not the answer either.  High risk = higher cost.  And that means not affordable.  And because you are older, higher risk.  Just look at your auto insurance.  The same thing happens there.  Higher risk drivers such as teenagers, people with prior accidents, pay higher costs.  And the same is no different for health insurance.

Eliminating policy coverage for certain issues, or making only certain coverages available in certain states without the ability to purchase insurance across state lines, makes no sense.  Nor does it make any sense to populate our states according to medical needs as one senator made a comment that perhaps “you would have to move to the state where the coverage was provided.”

But the even bigger need not being discussed, and the most important, is a long time ago, medical care was taken out of the doctor’s hands.  Pen pushers at insurance companies, who were not in the exam room, emergency room, ambulance, were the ones making decisions based on what their “manuals” dictated for their company.  Procedures and diagnostic tools would be denied for reasons such as not “age applicable” or “hunch is no reason.”  I mention these two specifically, because at the age of 42, I complained to my family physician of twenty-plus years, I had a weird chest tightness, for four months, that only occurred at the beginning of a physically stressful period, subsiding in about a minute.  Knowing me the majority of my adult life, she knew I did not complain about anything.  In fact, I hardly saw her except for a seasonal allergy shot.  But at the age of 42, and based on what she knew about my cancer past, she ordered an extreme test for someone my age(even I was not aware of what her hunch was), which resulted in me being on an operating table to save my life 36 hours later before I potentially could die from a fatal heart attack.  Had my doctor gone through al the diagnostics first, as time was clearly not on my side, I would have died.  Was the test expensive to the insurance company?  Absolutely.  But so would have been going through all the other steps, and if time had run out, I would have lost my life.  As my cardiologist said, “it was not a question if I was going to die, it was when.”

Having one story like this is bad enough.  But having been involved in the world of cancer support, I have seen plenty more “cost saving tragedies”.  Like this one, a simply ultrasound that could have detected heart damage at the beginning of treatments, knowing that damage if it occurred, could be detected right from the beginning.  But because statistically, the incidence of heart damage is less than 5%, that ultrasound is deemed not cost effective.  And then millions of dollars later, efforts used to save a man’s life are futile, and dies.

It is time to start looking at the single payer system.  Take the need for greed away from the insurance companies.  It is time to force the drug companies to sell either sell their products to us at the same low cost as other countries, or allow us to buy from those countries.  Hospitals need to be held accountable with itemization.  Doctors need to be allowed to be doctors.  A patient should be diagnosed and treated the same as our government officials who represent us.  Just because we had the unfortunate luck of being diagnosed does not mean we should be denied care.  We need to be able to see the doctors who have the experience and knowledge of our individual needs without wasting time and steps with those who do not have those things, only to end up with the right doctor, only now the situation worsened because the time wasted.  There is not one  cancer survivor that will not tell you, diagnosing and treating cancer as early as possible gives you the best chance at survival.

Of course, there will still be the war cry, “oh yeah?  Canada has universal health care, and they hate it!”  Sure, if you only talk to select people.  And I know Canadians on both sides, some hate, some say it works.  If it is that hard to accept Canada as an example, there 31 other major industrialized countries that have this kind of health care, some dating back to the 1950’s.  Surely, out of 32 countries, there has to be a success story as well as a road map how to do universal health care.  But I will tell you what they do not have in those countries, insurance companies lobbying against universal coverage.

One final fact, universal coverage is the only thing NEVER having been considered by our government, only discussed by one or two senators.  But plenty of time and action has been put into things that do not work, or will not work such as the ACA and the AHCA.

It is time for us to be the great nation that cares about its citizens, not just as a country, but as many of those who protest against health care for all, and call themselves people of faith, you need to put your money where your mouth is.  Sure, you may be young, healthy, and wealthy.  But health care is not just about for who can afford it.  And if you are foolish like I was at age 19, it could be too late.  And sure, there are plenty of other benefits besides never having to worry about seeing any doctor, being treated quickly before the situation gets too bad, prevention will be better.  Sure, there would probably be a tax to income, but the trade off is minimal compared to the sky high premiums and deductibles that otherwise would be paid.  Face it, would it not be better to pay a tax of $20-50 per paycheck as opposed to having to pay $1500 a month for insurance, and a $10,000 deductible?  Again, if you are young and healthy, you cannot afford to think “it won’t happen to me.”  I have met enough of you over the decades.

People are dying while our government fights for party loyalty and those lining their pockets.  It is time to look into making a single payer option our nation’s health care priority.

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