Nowhere near my next age milestone of 40 years, but I realize being in remission for cancer for 36 years is nothing to sneeze at. In fact, advice that I often give to new patients and survivors, in dealing with remission and survivorship with all the anxieties and concerns of relapses, is to take it, yes I know this will be cliche, one day at a time. And quick math, my 36 years comes to 13,140 days, and that is a long time. When I say it gets easier as time goes on, I mean it. I remember every day of my cancer journey as if it just happened. While at the same time, these 36 years seem to have flown by.
In the 36 years of my remission, the diagnostics used to diagnose Hodgkin’s Lymphoma, no longer used. The methods used to stage Hodgkin’s, such as the laparotomy and the lymphangiogram, are no longer used. The high dose, “scattered field” approach of using radiation therapy to treat Hodgkin’s, is no longer used. And the treatment used before the current standard of chemotherapy, a hybrid, MOPP-ABV (now used ABV-D), is no longer used. I have been in remission long enough to witness all of this progress.
Over these 36 years, I have been discriminated against for employment before the Americans With Disabilities Act was passed making that practice illegal. I struggled to get health insurance due to my pre-existing condition of cancer until the Affordable Care Act was passed requiring that acceptance.
I got married twice, and also divorced twice. I am blessed with two wonderful daughters, now in their twenties, over half of my survivorship, one on the verge of graduating college. I bought a house with a fence, just not white picket, which allowed the dog I always wanted, a golden retriever, to be able to run and play safely in the yard. I had a nice career working in of all occupations, medical research, even handling one of the chemo drugs I had been given. I participated in two school board campaigns as a candidate, the only time I have ever run for a public office. I have travelled to all four corners of the country, and around the world.
I have written and published many stories and publications, and two years ago, published my first book, “Paul’s Heart – Life As A Dad And A 35 Year Cancer Survivor” available on Amazon. I have had one of my stories acted out professionally by actors. And I still have many works in the process.
Music was always a huge part of my cancer journey, but also my survivorship. Whether I was disc jockeying (which I did for 40 years), or performing live vocals, it was the one time I could forget that I had cancer, or at least not think about it. I picked up the guitar and keyboards again, the first time since high school. And of course, I have a huge catalogue of music of all genres to listen and disappear to.
These 36 years have not been easy, or without price. Because medicine never studied what could happen if cancer survivors lived long term, more than the five years we are always quoted, and because we do, for many cancers now, late side effects from the treatments appear in some, not all, cancer survivors. The problem was, there was no plan for this and if it happened. And for those who did develope these issues, decades ago, could not find the care to help with these odd issues, or even how to treat them. But with the coming of social media and the internet, it would be other survivors, and eventually doctors catching on, now finally getting the attention to survivors, that we all should be followed up after five years, not necessarily by the oncologist, but at least by a primary care physician, to watch for something to develop if it does. Again, this is not guaranteed to happen, but if it does, it is important to be dealt with sooner than later. My health history on this page is filled with details of issues I have faced.
And one of the coolest experiences, was getting to reunite with my oncology nurse, my counselor, and my radiation tech, decades later, so that they could see the great thing they did. I know that not all of their stories had happy endings, but for a brief moment, I gave them one memory to remember they saved a life.
And then finally, and as important as my survivorship experiences, are the hundreds of patients and survivors who have crossed paths with me, either through peer to peer counseling, social media, or even happen chance meetings. Each and every person I have met or talked to, is a part of my success of 36 years. There is one downside, I have had to say goodbye to some of my fellow survivors, many way too soon, their bodies no longer able to handle the lifetime of trauma from their experience. Everyone, living and those gone, are all so important to me in my survivorship.
I am hoping, and according to my counter on my main page, that I will have another four years in me, to reach the 40 year milestone of survivorship, after which I will reset my counter to 50 years. I am still hoping to experience so much more. At least that is my plan. I know there is so much more for me to experience.
I cannot donate blood or organs because of my treatment history. I will not discover any cures or treatments, and financially I am not able to give back. So this is why I do “Paul’s Heart.” This is my way of giving back, sharing my private experiences, one reader or follower at a time, hopefully giving the inspiration that I looked for decades ago, and could not find, forcing me to take my fight against cancer on my own. And I hope my story does make a difference.
Stick around, there is going to be a lot more to come.
I get countless stories across my feed, about patients being denied procedures, treatments, or prescriptions, and not just in the world of cancer. Two recent articles referenced an adult dealing with severe kidney disease and a young child needing medication to prevent flare ups of a chronic illness, which would risk death. Both were being denied what was being decided by their respective doctors by a pen pusher in an insurance company, driven by only profit for shareholders and what is best for them.
It was not always like this. In the 1970’s and early 1980’s, I can recall my mother writing a $25 check to the doctor directly. There was no insurance, just him and his nurse. There was no one dictating to him how to care for his patients. But that all changed once insurance got involved. Then care became about being “managed” with at least some concern about preventative medicine. But still, there were no warning signs that care was going to be sacrificed for shareholder profits as we see today. Today, the insurance industry is out of control with its interference with patient care, resulting in one tragedy after another. And leaving other patients with only one option, to fight the almight insurance company with everything you have, just so that you can get done what your doctor knows is best for you.
First, let’s understand the basics. Only doctors know what is best for their patients for one simple reason. They are the one hands on, in the room with the patient, hearing the patient, with the entire history at their fingertips. Next, insurance companies are like casinos in that, like casinos, also known as “the house”, they both have the advantage, and they only make money if the customers/patients do not win and get paid. So now you understand the odds are against you as a patient. The insurance company cares only about making money for its shareholders, and that means only one thing, deny paying out as many claims as possible, and worse, denying care and treatments.
If you are one of the fortunate, who are either healthy or have what is called a “cadillac plan,” one that covers everything without restrictions, then you have likely never had to deal with a pen pusher denying a claim or treatment. But for those of us that have had this happen to us, we know things have gradually gotten worse, way worse, and people are dying because of it. So I am writing this post, to do my part, to help, at least provide some directions and information, how to do the seemingly impossible, fight the big bad giant insurance company. It sucks that for so many, fighting for their very lives, they have to spend any energy they have to fight for their medical care on top of it, and the odds are against them, and so is time.
Dealing with an insurance denial can feel infuriating because we know our doctors are only trying to help us, but not the shareholders. So there is that constant conflict. And sadly, it is going to take more than one attempt to defeat the insurance company, by putting the right kind of pressure on the insurance company, you can improve your chances. But it takes strategy and focus, all while you are sick, possibly fight for your life against time.
Get the denial in writing and read it carefully. Ask for the exact reason for the denial and pay attention to the policy language they are using as to the denial. Was it:
not medically necessary
experimental/investigational
out of network
preauthorization missing
coding error
Often times, denials are procedural in nature, and can be fixed. A pain in the butt when time matters, but it is what it is. Coding errors are becoming more and more common and can be fixed by the doctors administration staff (remember earlier how I mentioned only a doctor and nurse handling everything, administration staffing is a major reason for health care costs skyrocketing, and mistakes being made).
File a formal appeal immediately. Insurance companies expect you, expect most people to give up. DON’T!!!! But this is where you now have to ask your doctor to advocate for you and file this appeal for you (actually they will likely have an admin staff member do it). This is not a big ask of the doctor and is really quite common. It is in their patient’s best interest to do this, and do so immediately. The appeal needs to include:
a letter of medical necessity
supporting medical records
peer reviewed studies if applicable
a clear explanation of why other options will not work or have failed
If the appeal fails, or time is that crucial, request a Peer-to-Peer Review. This is where your doctor can speak directly with the insurance company’s reviewing physician. But don’t be fooled by the “peer to peer” as anyone knows, there are differences between doctors and specialists. And you do not know the specifically if your doctor is speaking to an actual peer of their standing (as in oncologist to oncologist, neurologist to neurologist or cardiologist to podiatrist or pulmonologist to orthopedist). There is good and bad to this, but hopefully, as long as the conversation is keep professional, if not dealing with an actual peer, the insurance doctor can trust what your doctor is trying to convey. But if true peer to peer, then there should be mutual understanding of what needs to be done. A direct conversation is the best chance to clarify any complexity.
Even then, sometimes those appeals or reviews are not good enough. This is where you really need to advocate for yourself, because your life literally depends on it. It should not be this hard, but you need to do what you can. You have the right to request an independent external review under federal law (the Affordable Care Act). This external reviewer is not employed by the insurance company, and makes binding decisions in many cases. State-specific instructions how to do this are usually found under your state’s Department Of Insurance on the internet.
Depending on your coverage, as in if private insurance, you also have the option to file a complaint with your State Insurance Commisioner. If you are dealing with Medicare, contact the Centers For Medicare & Medicaid Services. And if it is employer-based insurance, you may have to involve the US Department of Labor (ERISA plans). Regulatory complaints often trigger faster re-reviews.
Double-check if it could have been a coding issue. It happens more than you know, especially with insurance companies dictating what appointments should be, versus what the doctor actually does, and contradicts what the insurance company expected. With my complicated health history, this happens all of the time. So, if it was the wrong billing code submitted, or the diagnosis code is wrong or does not justify the test or treatment, or even the provider forgot any pre authorization needed. It is not a big deal to have the doctor’s office double-check the CPT and ICD-10 codes.
If the denial says “experimental,” ask your doctor to be sure to include specialty guidelines, standard-of-care publications, and consensus statements. Insurance companies may relent and reverse when shown what the doctor wants to do is standard practice.
Of course, if the situation is Urgent or Cancer-related, and delay will seriously jeopardize the health of the patient, reqeust an expedited appeal. Response must be faster, hopefully within 72 hours or less. A simple accompanying statement from the doctor, “delay may materially affect the prognosis,” should carry weight.
And if all else fails, there are some other options such as negotiating a cash price (which is often times less than billed rates), speak to a case worker or social worker about financial assistance programs, and if necessary, a legal consultation (especially if the denial contradicts policy language). Your doctor is going to do all they can for you, or at least they should, but understand, like the comparison to the casino, the insurance company only succeeds if they deny, deny, deny, and not pay out claims. They do not care about patients, only profits for the shareholders.
But what the insurance companies do not count on, is persistance. Like really, who does not want to survive what they are dealing with, that you have to fight even harder and waste more time. But keep this psychological strategy in mind. Insurance companies operate on time pressure, administrative fatigue (they count on you giving up), or they may even just get tired of the fight. Some times, persistence is one of the strongest tools in this fight.
Of course, this all circles around to my constant fight for universal health care. Those who oppose it, come up with one excuse after another, and even after it is proven to be the advantage, at the end of the day, it is the mere fact, that some simply do not want the government in charge of the insurance. These people are willing to pay over $20,000 a year, for a private entity to deny them health coverage as opposed to what is already taken out of paychecks, called a FICA tax, which contributes to Social Security and Medicare, an amount of 15.3% total, split in half between the two, so 7.65% to Medicare, already being paid along with whatever your pay towards private insurance. Medicare has a much lower, if any denial rate compared to private insurance, and more importantly there are stronger mechanisms for Medicare to fight any delays or denials. But then the argument falls back on “I don’t want government controlling my health care” or “wait times” (which already exist), or “can’t see who you want” (with a private option, yes you can), or whatever excuse those who oppose want to throw out. It is against your best interest to oppose universal health coverage which is why EVERY other industrialized country has it except for us, because in the US, health insurance is not about patient care, it is about profit over patient. And because of that, good luck with your appeals.
“Heavy is the head that wears the crown.” This is a line that you may have come across in your life at some point, whether reading Shakespeare, or even listening to the radio, this reference is often made. It references all the things that come with being a King, and not all things are good such as anxiety and pressure. A clearer explanation would be to tell the Greek legend of Damacles, a tale of one man’s admiration for his king and power. The king tries to convince Damacles of the dangers of being king, by allowing Damacles to sit on his throne. The catch is, directly above the throne is a sword, hanging by a single horse tail hair, and that horsehair could give way any moment, without any warning, demonstrating the perils of being king. While this tale can often be told making reference to today’s world and news, it can also relate to the life of a cancer survivor.
When diagnosed with any cancer, almost everyone gets told the same thing, “at 5 years of remission, we consider you ‘cured’, or not likely to have the cancer come back.” Sounds great, right? That’s all a cancer patient wants to hear and do, get to that 5-year mark and beyond. But what happens after that? This is where it gets perilous, just as the sword of Damacles dangling over his head. Sure, great things lie ahead as we are on our “throne.” But there are anxieties and potential perils also. And just as if the sword were to suddenly fall, so too for the cancer survivor.
Before I go any further, I need to give credit to this comparison of cancer survivors to Damacles, to whom it belongs, my doctor. He was the first I ever heard give us patients an explanation what it feels like to be a cancer survivor.
During the first five years of survivorship, the anxieties are real. I still remember everything clearly. Symptoms pop up, similarly to when I was diagnosed. The worry every time a follow up appointment came up or worse, a dreaded scan, hence where the term “scanxiety” comes from, the worry that the scan will show that IT is back. If only it were that easy to remember, that some of the symptoms that we feel, we had long before cancer, and they were just something that happened, which doesn’t mean necessarily the cancer came back. And as for the scans, there is no reason to believe otherwise, not to believe we are still in remission, unless we are told otherwise. But that is what cancer does. It takes away our control, to be able to control and ease our thoughts. Once taken, it is hard to gain back. But I have good news, that control does come back. It will come back. This is where the comparison to Damacles fits. That sword, the fear of relapsing, hanging over our heads, by a single strand of hope, the sword of relapse does not come crashing down on us.
I promise you, this fear of relapse does get better as time gets on. In those first five years, your follow up appointments will get further apart, bolstering your confidence that your remission is getting stronger. Soon, less follow up scans are ordered, and appointments are sceduled even further apart, as far as just annual. It gets to a point soon enough, you no longer concern yourself with that sword hanging over your heads.
Then around that five-year mark, you have a crucial decision to make, and it is entirely up to you.
(photo courtesy of Live Science)
I am sure you have heard the expression, “bury your head in the sand” before. What happens when an ostrich does that? It cannot see, it ignores intentionally, it avoids, anything that is unpleasant or dangerous. And so, as a five-year cancer survivor, you can “bury your head,” and intenionally move on, force yourself to forget you had cancer (in all honesty, that part won’t ever happen), and never set foot in another doctor’s office, or…
You can take it from someone who was once in those shoes, that is not a wise option. It is not necessarily bad, I am just saying, continue to read. I want to stress, I am not a doctor. But I was that ostrich. And for years, as I tried to pull myself away from the world of cancer, it was a fellow survivor who kept trying to pull me back in, and I could not understand why. I was healthy, not like her, apparently dealing with health issues related to her treatments a long time before. This was not my situation. I was not like her. If I was the ostrich, she was the dolphin or meerkat, always looking out or on guard.
(photo courtesy of BBC Earth)
And then one day, that meerkat yanked the head of the ostrich out of the sand. It could no longer avoid the danger. Eighteen years from my last chemo treatment (and radiation), I was diagnosed with what is nicknamed a “widow maker” for obvious reasons, a fatal blockage that normally results in a fatal heart attack without immediate medical intervention. This ostrich, though not feeling great, but with its head in the sand, had developed a condition related to his treatments two decades earlier. And the problem was, no one was watching for it. And for the most part, no one knew to be watching for it, not even doctors. It is not an understatement, that as cancer survivors we are not expected to live beyond five years. Why do I say that? Where do you see any research on long term cancer survivors beyond five years, or maybe ten years now? You don’t. So back when I was treated, in 1988, and the decades before that, late developing side effects were not studied, because we were not expected to live long enough to develop any. But the truth is, we are living longer, and not just from Hodgkin’s Lymphoma, but many cancers. Which means many of us, not necessarily all of us, my develop issues related to our treatments. Science is slowly catching up. The Childrens Oncology Group has published and updates its “survivorship guidelines,” ( survivorshipguidelines.org ), which though its title is a bit misleading, information provided inside can actually apply to ALL cancer survivors as far as follow up recommendations and pertaining to which treatments. Most importantly, it is easy to follow.
“But Paul, you say you have no idea how many cancer survivors don’t have these issues, but everyone you know does have these issues.” Good point to which I reply, “people only seek out help when they need it.” It took eighteen years for my first late effect to become present, and it almost killed me. Whereas, had I kept seeing a doctor, in particular, my primary care doctor, equipped with the knowledge that these late side effects were a possibility, this condition could have been caught years before it was a threat to my life. And that is the difference. I am advocating for you, as a cancer survivor, to not bury your head in the sand, be the meerkat. No one knows if they will develop any late side effect or not, and only a doctor who knows what to watch for, will be able to diagnose it, in time, if it happens.
Anyhow, back to the sword of Damacles.
(picture is AI generated with ChatGPT)
Soon after my recovery from my emergency open heart surgery double bypass, I was encouraged to visit what is called a “survivorship clinic,” a program that specializes in recognizing, treating, and managing late side effects from cancer treatments. Now, if you noticed, there is a second picture, very similar to the top photo of the sword of Damacles. Only this second photo has multiple swords. Yep, you guessed it. In my case, I am dealing with multiple swords of Damacles, each suspended with that one strand of horse hair, perilously hanging over me. Which one(s) will drop first?
I can remember back in the day before everything going digital, my entire medical record being no more than a 1/3 of an inch thick. Even with my Hodgkin’s Lymphoma, my file was not that expansive. But following the first diagnosed late side effect being diagnosed, my medical file would not only expand inches in thickness, a second file would also need to be started to continue on.
I want to list these “swords” for you. I won’t go into the details of each as this post is long enough. But each diagnosis is related to my chemo, radition, or surgery for my Hodgkin’s history. The diagnosis is either in treatment, observation, or watch for further development. Some can be fixed (a temporary thing), some cannot. I will do them by “area”.
asplenic (no spleen), more susceptible to contagions (surgical effects – observed)
So now you get the idea of why I picture myself with so many swords over my head. My heart and my lungs are of concern, always, while everything else is on the backburner. It seems like a lot, and it is. But as I stress, not everyone gets these late effects, some only one or two, some have had to deal with more than I have. The problem, like I said many times before, there are so many survivors out there, likely dealing with health issues that just don’t make sense for their demographic, and it is late side effects that are the cause.
As overwhelming as all these seems, I actually manage everything quite easily, calmly, and rationally. I advocate for myself, armed with the knowledge necessary to take on insurance companies when they erroneously feel they are qualified to overrule my doctors. And finally, I know that I have not just great doctors taking care of me, but doctors who are knowledgeable in the care of long term cancer survivors and their late side effects. No, it does not make it any less scary to face these issues, but I know my doctors will do all that they can, and I am at peace with that.
American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues
Childrens Oncology Group
cancer information for patients, survivors, caregivers – child or adult
Paul's Heart 