Paul's Heart

Hodgkin’s Survivors – Like A Set Of Tires

You are looking at the title, and the cover photo, and wondering if I am having some sort of crisis. I assure you that I am not. But as is prone to happen to me in the course of a day, something prompts me for a post, only to be given a stronger example. Please, just indulge me, and follow me.

So this morning, as I was getting ready to run out for a few errands, I looked up, and noticed a light bulb out. It is just a bulb, but it is frustrating me. Over the last several years, I have replaced it at least twice, nowhere near the “1000 hours” of life advertised on the box. The other two bulbs in the light bank, do not burn out. For the record, though I have not kept count, pretty sure I have not hit the “1000 hour” mark. But what makes the one in the middle go out repeatedly and not the ones on the outside? Just something that made me go “hmmmm…”

The first task of my day, was to get an oil change. Usually an uneventful thing to get done with a car. But, I noticed, my car had begun to start slipping on wet surfaces, and it was just my opinion, after seventy thousand miles, it might just be time for a new set of tires. I asked my mechanic to take a look at my tires, and if needed, order me a new set of four.

The mechanic took a look, and said the back tires looked good, only the front tires would have to be replaced. It caught me off guard. I looked at the front tires myself before going to the garage, and I could see the treads were gone, and just assumed all four tires were that way, without looking at the rear tires. The mechanic proceeded to show me the difference in the tires, and he was clearly correct. In fact, with the two new tires on the front, the treads were almost identical to the tires on the rear wheels.

In full disclosure, normally, every car I have ever had, I have rotated my tires regularly. This was to make sure the tires wore evenly. But things happen. A tire could be under or over inflated and cause a tire to wear unevenly. Perhaps a manufacturing defect could result in the cords of the tire coming through before the other three tires. I admit, for the first time with a car I owned, I did not rotate these tires. All four tires were put on at the same time, a few years ago, yet only two wore out, both on the front, but not the rear two tires. Again, why did this only affect some of the tires and not all of them?

Now that I have you caught up to speed, understanding the issues that I have to deal with as a long term cancer survivor, others may have different issues, and some may have none. And there is no rhyme or reason. Science may explain some of the things, but the “why not for everyone,” can add to the complications for us emotionally. If strong enough, these differences, when known, can stir up an emotional issue I have with my survivorship, “survivor’s guilt.” Simply put, “why is this happening to me?” or “why is this not happening to me?” The strongest trigger for me, is when a fellow survivor passes away, their body no longer able to deal with the amount of trauma it has endured over the years. Do not mistake my survivorship guilt for being ungrateful. Nothing could be further from the truth.

Yes, like a set of four brand new tires, cancer treatments for a particular cancer, should result in the same results during and after treatment. But do they? No. They do not.

I need to preface what you are about to read with a disclaimer. A lot of progress has been made in the diagnostics and treatments of cancer. I am thirty-two years out now for the treatments of Hodgkin’s Lymphoma. And over those decades, my treatments are now considered either obsolete, or have been modified to be done much safer, with hopefully the same success of remission, and less risk. So the rest of this post, it is going to be geared to us survivors of Hodgkin’s Lymphoma from the 1990’s and before. There is too much to unpack to cover everything, and the point of this post, is to demonstrate the fact that there is no rhyme or reason, why some of us develop late side effects from our treatments, some do not, and those that do, many not develop issues that others may develop.

Up until the 1990’s, the extreme high dose of radiation therapy used, and toxic cocktails of chemotherapies were administered without much knowledge of potential side effects developing later in life, should a Hodgkin’s survivor live longer than five years, a standard in the world of cancer for life expectancy. But the fact is, with Hodgkin’s having one of the highest rates of remission, there are hundreds of thousands of us, and many are in remission even longer than me, forty and fifty years. Unfortunately, back when we were treated, there was no real plan for following up, to monitor for any late side effects, because none were known. It was never studied, because we were not supposed to survive cancer for decades like we have. But we did, and we do.

Here is where my tire analogy comes in. I have a few fellow Hodgkin’s survivors who were treated around the same time period as me, were the same stage (or level) of cancer, and treated with similar methods. But our late issues are mostly all different, whether they have occurred at a different pace, different health issues, or perhaps none at all. Some of my fellow survivors faced not only a relapse of Hodgkin’s, but some, secondary cancers, even more than one. I have had two close calls between a suspicious spot in the radiated area of my neck, and a nodule of my thyroid. I do have two other potential concerns for cancer, of the esophagus and lung cancer, areas both in the radiation field.

Cardiac wise… wow, where to begin. This I feel is one of the most underrated areas of follow up for us. Because the majority of us are fairly young, yes, I consider 56 years old to be young, standard cardiologists underestimate the potential for cardiac disease and heart failure, a result of complications from our treatments. I was 42 and dying when mine was discovered, by accident, eighteen years after my treatment. A “whim” by my primary care doctor, saved my life, and set me on a rigorous path of care and follow ups. Since then, I have had two more heart surgeries, and will likely have more in the future. Some of my fellow survivors have not had this experience.

Not everything is visible to the naked eye either. The dentist will notice issue with the teeth and jaws. Muscles in radiated areas are easily noticed with a shirt removed, perhaps one shoulder hanging lower than the other. Spinal deficiencies and changes can sometimes be noticed.

You could go through all of the body’s systems of my fellow survivors, and you would see, just as a brand new set of tires, or a light bank, everything will likely occur at a different pace, if at all. The tragedy, along with those who pass away, not having had the ability or opportunity to monitor their health, which could have made a difference, is that there are hundreds of thousands of survivors who still do not know this. On the peer support pages I participate, I believe membership numbers average around 900+. Only 900 survivors out of hundreds of thousands of survivors are definitely aware of what may be happening to them. The rest, like me originally, will need to have some luck, a doctor who has the open mind, to probe a little further, for a condition that does not make sense either with the symptoms or the age of the patient. Because medicine has not caught up yet. And though my fellow survivors and I do all we can to communicate our issues, it is not enough, and it is not happening fast enough.

Finally, the crass comparison of survivorship to tires? Cancer survivors would be Michelen Sport PAX tires, some of the most expensive and high quality tires which even if they suffered a nail in the tire, would still keep running. Therefore, it is all about the wear and tear, for both the tire, and the cancer survivor, and clearly not all are the same.