Paul's Heart

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.