Paul's Heart

Life As A Dad, And A Survivor

It Should Not Have To Be This Hard To Get Cured


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.

Just Call Me Damacles


(photo is AI generated with ChatGPT)

“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”.

Head

  • eyes = macular edema, retinopathy, macular telangiectasis (chemo effects – watching progression)
  • teeth = enamel loss, osteonecrosis risk (bone loss of jaw) (radiation effects – treated as occurs)

Neck

  • thyroid = hypothyroidism, nodules (watching for cancer) (radiation effects – treated with prescriptions currently)
  • carotid artery disease = left artery blocked and stented (radiation effects – being followed)
  • “dropped head” syndrome = muscle loss in the neck causes head to fall forward (radiation effects – observed)
  • muscle loss resulting in “pencil neck” appearance (radiation effects – observed)

Shoulders/Upper Body

  • muscle loss, shoulders look like chicken wings, increased injury risk (radiation effects – observed)
  • radiation fibrosis syndrome (radiation effects – observed)

Heart

  • cardiac disease (chemo and radiation effects – being followed)
  • coronary artery disease (radiation effects – bypass and stent – being followed)
  • aortic valve disease (chemo and radiation effects – valve replacement – being followed)
  • mitral valve (chemo and radiation effects – being followed)
  • congestive heart failure (chemo and radiation effects – being followed)
  • myocardial ischemia (chemo and radiation effects – being followed)

Lungs

  • restrictive lung disease (radiation and chemo effects – being followed)
  • pulmonary nodules (radiation effects – being followed)
  • nodule suspected as indolent adenocarcinoma (lung cancer) (radiation effects – closely followed)
  • have had pneumonia twice, once septic

Gastro (Digestive)

  • Barrett’s Esophagus (pre cancer of esophagus) (radiation effects – being followed)
  • Zenker’s Diverticulum (radiation effects – observed)
  • Hiatal hernia (radiation effects – observed)
  • Extreme reflux (radiation effects – being followed)
  • polyps in esophagus and colon (chemo and radiation effects – being followed)

Endocrine

  • Type 2 diabetes (chemo and radiation effects – being followed)
  • Insulin resistance (chemo and radiation effects – being followed)
  • fatigue (chemo and radiation effects – observed)

Skeletal

  • Osteopenia (chemo effects – observed)
  • Facet joint arthritis L1-L5 vertebrae (chemo effects – observed)

Immunological

  • 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.

The Importance Of A Colonoscopy


(photo courtesy of the Guardian)

The entertainment world and fans around were devastated to hear that actor James Van Der Beek, most known for his role in the television show, “Dawson’s Creek,” had passed away, complications of colon cancer, at the age of just 48 years old.

Van Der Beek is just one of many celebrities who have lost their lives to what is actually considered a cancer that has a really decent “cure” rate, especially for how prevalant it is compared to other cancers. Chadwick Boseman of the super hero franchise, “Black Panther” passed away a few years ago, also of colon cancer at the age of 43. For those of us older, Kirstie Alley of the television show “Cheers” died of colon cancer. And of more modern times, Randy Gonzolez of TikTok’s “Enky Boys,” died of colon cancer at the very young age of 35 years old. Cancer does not discriminate when it comes to age.

Those that have reached remission or cure, include Sharon Osbourne, widow of the great rock legend Ozzy Osbourne, a living survivor and advocate of colon cancer.

In my world of long term cancer survivors, especially when it comes to Hodgkin’s Lymphoma survivors of twenty, thirty, or forty years, some have found themselves facing colon cancer due to late side effects caused by their extremely toxic radiation and chemotherapy treatments. Though myself, I have not been diagnosed with colon cancer, as a long term Hodgkin’s survivor, I am watched and screened for colon cancer as part of my survivorship care. More on that later.

I am not going to get overly scientific or lost in the weeds with colon cancer, because I want to make sure everyone understands not just how treatable colon cancer is, but how easy it is to help your own cause. Colon cancer is highly treatable, well over 90% when caught and treated early enough. Success in treating colon cancer is also attributed, because it is a cancer that can be prevented or at the least, the risks reduced. Of course a good diet helps to lower the risk of developing colon cancer, but also does cessation of smoking (quitting), and limited alcohol consumption. But of course, if these lifestyle choices are too difficult, there is one option that actually is very effective in preventing this cancer, a colonoscopy. I know, your rear end likely puckered up just at the mention of that, so, I am going to put that off to the side for a moment.

Colon cancer are tumors that begin usually as polyps, that undergo DNA changes that make the cells grow uncontrollably, eventually into cancer. However, if the polyps can be removed before this growth occurs, the development of the cancer is prevented. A simple formula, a polyp removed = a cancer prevented. How does a polyp get removed? Via a colonscopy. But again, I know that word is scary. I will get back to that shortly.

So what are symptoms that can occur that might be of concern to seek out a doctor’s care, possibly for colon cancer? First, bowel changes. We all have our routines, mine are quite complicated, but in my case, reliable. Any change I would easily recognize. Another noticable concern, would be blood in the stool/toilet, from streaks of blood, to a lot. Abdominal discomfort is another sign that should be looked into, as is not emptying everything during a bowel movement completely. As odd as it may seem, unexplained weight loss is also something that should be looked into by a doctor.

Though age is not discriminated, it is considered higher risk for colon cancer, once someone is over forty years of age. A family history or genetics can also play a role for developing colon cancer. Bowel issues such as inflammatory bowel disease (IBD) and other conditions can contribute to a diagnosis of colon cancer. Race, lifestyle, and diet are all factors of developing colon cancer. While I am older, I do not personally have any of the other risks, okay, maybe my diet is not the best, I do have one factor against me when it comes to colon cancer. The treatments I received for my Hodgkin’s Lymphoma, radiation therapy and in particular, the drug Procarbizine from my chemo cocktail, leave me at a higher risk for colon cancer, as has been the fate for many of my fellow Hodgkin’s survivors.

As I said, colon cancer has a very high rate of remission/cure, over 90% when caught early or localized. Now I am getting to the other “C” word, the one that is so important, it has the power to prevent the cancer from developing, the colonoscopy. There are some unpleasant stereotypes which I am not going to get into, because they are, well, just stupid, especially if they prevent you from doing something that might just save your life.

So what is a colonoscopy? It is a PAINLESS medical procedure, where a very thin tube with a camera at the end, travels up your butt, while you are anesthetized (via twilight sedation or general anesthesia). YOU HAVE NO IDEA THIS IS BEING DONE AS YOU ARE OUT COLD!!! While the doctor is looking around, if they see a polyp or polyps, the doctor removes them, and likely sends them to pathology for further study. Regardless, because that polyp(s) was removed, it will not progress to cancer. A polyp removed is a cancer prevented. When you awaken, YOU HAVE NO MEMORY OF WHAT HAPPENED!!! You will likely let out the post-colonoscopy fart, audio and visual now available as a montage on TikTok, have some crackers and a drink, get dressed, and go home. If pathology determines the polyps were something more, well, you cross that bridge if you get to it.

If you are fortunate to not have any polyps, then it will likely be recommended not to have another colonoscopy for ten years or more. But, if as in my case, I have polyps every scope, I have to get a colonoscopy every two to three years. In the last fifteen years, I have not only had five colonoscopies, but I have an added procedure called an endoscopy done, where they go down my throat, again, looking for polyps. I get both done at the same time since I will be out cold anyway. I call it my “pig on a spit” procedure (there is a visual for you). To keep my sense of humor, I always make sure to remind the doctor not to mix up the two tubes, so that I do not wake up with my breath smelling like shit.

So that is all there is to a colonoscopy for the most part. And it literally can save your life. And as I said, it is painless! So why all the fuss? There are some inappropriate stereotypes which I won’t address as they are just ridiculous, unfounded, and untrue. But there is one hurdle, that everyone seems to struggle with, “the prep.” What is the prep? It is a high powered laxative, necessary to clean your entire bowels out so that the camera can get its clearest pictures. Think of it as medicinally induced diarhea. While there are various forms of this “prep,” I am only sharing my routine, which, by itself is bad enough. But I have to do what is called a “super prep” as I have a complicated bowel system (which I am not going to get into). But I will explain it as just the normal “prep.”

You start likely about a week before, changing your diet to limited to easily digestable foods and avoiding “colored” foods especially with red dye. The day or two before, I am on clear liquid, like drinking chicken broth. Then, the night before, I pop a couple of stool softeners, wait a few hours. While this is happening, I mix the “prep” solution, incorrectly called “Go Litely”, often a flavored powder, mine is citrus, with any clear liquid. I choose Sprite. Then I put it in the freezer (it is an entire gallon, so it will not freeze in the two hours it chills), as the colder it is, the easer to get down. The instructions are clear, drink 8 ounces every fifteen minutes. You can either just swallow regularly, chug it as I do, or use a straw. At first, that it seems that it is no big deal, that first glass going down. Then as you finish the second glass, you can tell something is happening.

I want to stress, there is no pain! You are just about to experience something somewhat uncomfortable, really no different than any bout of diarhea you may have experienced, other than, for the next four to five hours, until you are emptied out completely, and you will empty out. Like I said, inappropriately called “Go Litely”, should be called “Go Quickly!” By the third glass, you find the need to coordinate between continuing to drink and run to the bathroom. As you finish the last glass, it is just a matter of another hour waiting for the urge to go to the bathroom to finish. Then it is off to bed, wake up the next morning, in some cases you may have to do a little more prep, and then it is off to the colonoscopy.

Literally, that is all there is to it. I am not sure how Van Der Beek or the others discovered their colon cancers. But they were all too young. Cancer does not care about age. Van Der Beek leaves a wife and six children behind. I have two adult daughters, and I know the increased risks I have for colon cancer and I want to make sure they do not have to mourn me for something that is preventable for the most part.

I am known among my fellow long term survivors for always pushing them to get colonoscopies because we have that extra risk. And we have several who do end up being diagnosed with colon cancer, and we have had some who have passed away.

But on this post, I want to encourage you reading this, if you were born at a time when music was the greatest, the mid ’80’s, you should really consider a colonoscopy. You are in your forties, young, the time when the concern increases, and prevention is key. Please consider getting a colonoscopy. James would be one of the first to encourage you to do so.

(photo courtesy of People.com)

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