Paul's Heart

Life As A Dad, And A Survivor

A Diagnosis With No Name For It

My friend and fellow Hodgkin’s Lymphoma survivor Danny shared this meme on his social media page. Today marked a monumental day for him as he marked his 30th year as a cancer survivor. Like me, and many others he joins a large group of others who have marked this milestone, On to the next milestone for him.

So what comes to your mind when you hear the words “long term cancer survivor?” The average person may think that it simply implies just as it is written, survived cancer a long time. Back in 1997, I was introduced to an email support list that was called “long term survivors.” I had been in remission less than ten years at the time, so personally, I felt I did not fit the description of having survived cancer that long. At the insistence of a member of that list, I enrolled anyway. Soon, I would learn an entire different meaning of “long term cancer survivor.”

Almost immediately, I realized something different about this email list than what I was not expecting. Sure, there were people who had survived decades, several decades in fact. But there was something else about the members in this group. They all had health issues, and these issues all seemed attributed to their treatments for their cancers.

Without getting too far into the weeds, I will use myself as an example. Thirty-two years ago, I was treated with a high dose of radiation (no longer used) and an ultra toxic chemotherapy (no longer used) to treat my Hodgkin’s Lymphoma. Back in 1989, while the immediate side effects were known, such as nausea, hair loss, and fatigue, little if anything was known as for in the future, potential side effects that may develop. Potential issues were a secondary cancer, or enlarged heart. Fast forward, this is my reality.

  • cardiac issues – double bypass, stent near the heart, stent in carotid artery
  • pulmonary issues – restrictive lung disease, “dead” lower left lobe, multiple unidentified spots on both lungs
  • endocrine issues – thyroid disorder, diabetic
  • gastrointestinal issues – risk of esophageal cancer, diverticulum, reflux, swallowing issues
  • spinal issues – osteopenia, facet joint arthritis in spine
  • muscular issues – radiation fibrosis, severe muscle loss in shoulders and neck

There is more, but you get the idea. On this email list, and on future social media pages, there were actually many “long term survivors” with similar or other issues. And it is true, we have survived cancer a long time. But when we talk among ourselves, we refer to ourselves as “long term survivors,” which of course, having a different meaning. While all of the issues that I mentioned above can have their own diagnosis, and clearly diagnosed, there is no name or diagnosis for the multitude of issues collectively as a group, all related to the late development from cancer treatments received long before.

So, as you can see, “long term cancer survivor” has two meanings, someone who has survived cancer a long time, and someone deals with all of these extra issues related to their treatments.

During the 1990’s, with the help of the internet and social media, patients/survivors, soon discovered that they not only shared similar cancer histories, but also similar complications of their health later on in life. So, fast forward to the long list I wrote. If you were lucky, you found a doctor who understood the correlation between the cancer history and the current health issues. But those doctors were few and far between. And worse, administratively, insurance companies had no idea how to code things that just did not make sense for the demographics of age. When it comes to applying for disability, one of the above mentioned ailments may not qualify by diagnosis, but all of them combined, having reduced quality of life and reduced functionality should qualify for disability, but there is no name for that.

We could call it “long term survivor syndrome,” but that takes what is considered an inspirational phrase, and gives it a negative connotation. Coming up for a group name for our issues collectively is only one issue, getting properly diagnosed, properly treated, and properly followed up is another. It sound easy, but it is not. Let’s take my double bypass. I was 42 years old, in fairly good condition, but had major chest tightness. On a whim, my family doctor out of curiosity ordered a test that would not have been ordered normally on someone my age and “healthy” appearance. It saved my life as I was diagnosed with a “widow maker” blockage of a main artery to my heart. That was discovered eighteen years after my last treatment attributed to cumulative and progressive radiation damage. Nobody had been looking for that to happen. I just happened to complain about a symptom. Soon after, all the other stuff was found.

I am one of the lucky ones. I found a doctor, who understood these issues, and combined with my personal physician, both work as a team to maintain my issues. Maintain, because these issues are progressive in nature, cannot be reversed, cannot be stopped, but can be maintained. While medicine is finally catching up with these late developing side effects and how to handle them, there is one more issue that still cannot be taken care of, at least to my knowledge.

There is a risk when it comes to operating on someone with my issues, due to the treatments similar to what I underwent, uncontrolled bleeding and difficulty healing. In fact, it has been my experience over the years, it has not been the procedures that have led to fellow survivors passing away, but rather, issues after correction has been attempted. This extreme risk, in spite of being faced with the necessity of life, usually leads to the denial of any procedure as extreme as a transplant of any kind. I have known several other survivors over the years who have needed either lung or heart transplants, only to be told, their bodies had gone through too much and would not be able to handle it, or the risks of the surgery considering our history were too great to permit success, even though their death would be imminent without the surgery.

In other words, medicine can fix everything with your heart individually, each time with its own risks, but to do a complete transplant, which would take care of all the radiation damage to the old heart, just won’t happen. Up to this point, I have known no one personally, who had been approved, or attempted any kind of major organ transplant, until this year.

The world of cancer survivorship issues had met their match with “Amy.” The condition of her heart was so bad, the only option for her, was a heart transplant. And of course she would be denied. And denied again. And again. Always for the same reason, too much of a risk. But anyone who was familiar with her, knew that in her personal life, she was a successful and determined woman. And at her young age (seven years younger than me), she was not about to give up. Just like many of my fellow survivors, having difficulty finding someone to help us with our issues, so did “Amy” have even greater difficulty finding just one surgeon, willing to do the surgery, that she was not only willing to risk, but was her only hope.

Years later, she finally got that approval, finding a doctor willing to do the transplant. The only thing left to do, was to wait for a donor. She got the call that her status had been moved to high priority, and was admitted to the hospital to wait. Sadly, a pre-surgical procedure led to complications for her, and though she got through those, time had run out with her heart.

Among my fellow survivors, who spent a lot of time getting to know her, we were often the recipients of her selfless support she offered to everyone, in spite of her struggling health, a loss now being felt of major proportions. Her picture is who she was, someone who was optimistic and supportive, through all times, never giving up hope. I know and understand the risks that she faced with transplant surgery, and how badly she wanted it. Selfishly, I wanted it as well, because she would have become the first person I knew to undergo a transplant, which would mean that medicine was continuing to evolve in the much needed care of long term cancer survivors, er…umm… or whatever you want to refer to us as.

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2 thoughts on “A Diagnosis With No Name For It

  1. Lynn Boddy on said:

    As always, spot on. Also, a nice tribute to Amy. I hope her family sees this.

  2. Heather Gaillard on said:

    Paul, Thank you. I too hoped against all hope that Amy would get her transplant and go on to have many more good years. Like you, I finally thought it was going to happen for a member of our tribe. I do hope you can share this with her family💜🙏💜

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