Another Sword
(picture by radiopaedia)
Over the years, I have made the comparison of my health history as a long term cancer survivor to that of the legend of “the Sword Of Damocles.” In ancient Roman lore, Damocles flattered his King, Dionysius about how great it must be to be king, to have all the power and wealth. Dionysius offered to let Damocles sit on the throne, to experience what it was like to be the king, but directly suspended over the throne, and Damocles, was a sword held by just one strand of a horse’s tail, able to drop at any moment the tail hair would finally give and break. Damocles, having the sword hanging over his head of course produced an anxiety and fear, never knowing if or when it would drop, teaching him that all the power and wealth of being a king could all end suddenly.
When I was diagnosed and treated for Hodgkin’s Lymphoma back in 1988, while the prognosis for survival was very good, 85% at least five years, nothing to very little was known about what could happen after those five years. The truth is, once a cancer patient reaches that five year mark, they are often treated as if they are officially cancer free, very little concern for the cancer to come back. But in 2008, I was discovered to have developed not just one issue, but several, late side effects from the treatments, chemotherapy and radiation therapy, that were used to “cure” me. Once discovered, it then had to be determined which was a priority for corrective action, and what could be “watched” for progress if intervention was needed. Though I had several issues, the prominent one that got the rapid and urgent attention, was a major heart blockage, often referred to as a “widow maker” (it does not take a rocket scientist to figure why they call it that), that had me on an operating table within 36 hours to save my life via emergency bypass surgery. Obviously that surgery was successful as I am typing this post.
But during the mad scramble to prepare me for the surgery, other tests had been performed. Soon after the bypass had been complete, more tests had been ordered as it was soon discovered a common cause behind all of the issues discovered, my treatments for cancer. With the “widow maker” dealt with, all of the other issues would be put into a “watch and wait” status, until the next issue would develop to a serious enough level to require intervention… my “Swords of Damocles.” I have many “swords,” thirteen in fact that are being “watched”, and once in a while, a completely different sword pops up out of nowhere, without warning.
(photo courtesy of Final Fantasy Wiki)
But in my last post, I made mention of a health issue, that several readers picked up on. I honestly had just been talking about it “matter of fact” in relation to conversations that I was having with my “now adult” daughters about my health history, something that they are old enough to know and be aware of. If there was an order of how all of my “swords” have been discovered, the issue in my last post, would have been number four, unidentified spots on my lungs. At the time of discovery back in 2008, they were just small enough to be noticed. Given my health history and exposure to the toxicity of chemo and radiation, it was determined necessary to watch and study these spots for development, how fast, and any other changes. Ironically, this would mean more exposure to radiation via chest CT scans and Xrays, but then hey, if the extra radiation could help discover something potentially cancerous before turning too bad, it was a worthwhile risk.
And so I would have a CT scan every year. By the third year, more of these spots would appear, but one spot in particular was getting attention. It was now measured at two millimeters, but it was unidentified and uncharacteristic. My doctor determined that it was still best to watch its progress as opposed to doing anything invasive such as a biopsy. The CT scans would continue annually, and over the next many years, that spot continued to grow, ever so slowly, and soon a second spot became measureable. But still, unidentifiable, my doctor felt it was safe to still “watch and wait.”
A couple of years ago however, fourteen years after it had been discovered, that spot soon had a couple of extra words attached to the description, as well as the size now more than 400% larger compared to 2008, “possible adenocarcinoma,” lung cancer. Over the years of my survivorship, I have learned not to put the carriage before the horse, or let my anxiety get the best of me, until I get the full explanations or decisions to be made from my doctor. And yet, my doctor felt, and I agreed, still no reason to do any biopsy, and decided to continue to watch this nodule. Yes, in the meantime, that smaller one has also grown, but not as rapidly, and a couple more are now measurable.
I had been under the care of a pulmonologist (lung doctor) once before, back in the beginning of all this mess. This year, I made the decision to hire another pulmonologist. I had an appointment already scheduled with him, as well my annual CT scan. But thanks to the way medical records are now kept electronically, I was able to see my results of the scan prior to my appointment. The nodule had grown three millimeters since my last scan, and now the phrase “suggestive for indolent lung adenocarcinoma,” lung cancer. Fuck!
Another cancer had always been a possibility due to the increased risks from my treatments. I had a skin cancer scare back in the early 2010’s on the back of my skull at my hairline (clearly from the radiation therapy). I have frequent polyp histories in both my esophagus and colon requiring removal of the polyps before turning cancerous, as well as a condition called Barrett’s Esophagus, a pre-cancerous condition for esophageal cancer. And of course, I had always had lung cancer on my bingo card of health.
But lung cancer had a different meaning for me. My father died from lung cancer, or rather complications of lung cancer. He had the diagnosis, surgery to remove the tumor, which the doctors had declared at stage one, the best case scenario. But following “preventative” chemotherapy and radiation therapies, something happened, horribly. My father would end up terminal and pass away in less than a year.
Now I have a reputation for being a difficult patient with some doctors, and yet a helpful patient with others. You see, I demand that I am included in every decision being made, and that means I need to know everything that I am dealing with. So when I meet a new doctor, I give that doctor a chance to talk to me, explain his thoughts, and then it is my turn to talk, especially to ask questions. If my questions are met with annoyance or any other kind of pushback, I am out the door. If the doctor is receptive to my “involvement,” we move forward.
So I went to the appointment with my new pulmonologist and he did not waste time with idle get-to-know-you chit chat. Immediately he began talking about action with this nodule on my lung. With no official confirmation, though the characteristics all but definied the nodule as cancer, he talked about two options. The first option, a needle biopsy which came with a risk of a collapsed lung, oddly enough one thing I have not experienced with all of my health issues, and the second option would be to remove the lung in a procedure called a “wedge”, meaning they would take a hunk of lung with it to make sure that they got any peripheral cancer cells if any nearby.
To be clear, there is a huge difference between my Father’s lung cancer situation (smoking for six decades) and my situation (exposed to an unGodly amount of radiation to my chest area for treatment of cancer). However, my concern would follow my Father’s path from what I witnessed, and with major factor supporting my concern. My Father’s lung cancer was stage one, limited to just the tumor. They gave him chemotherapy anyway for four cycles as preventative, still no evidence of cancer. But then the decision was made to have him undergo preventative radiation therapy. Soon after that, he was declared terminal and he passed away a few months later.
So here I am, with a suspected lung cancer nodule, not confirmed. I am not willing to undergo the needle biopsy risking a lung collapse. Risks and being a long term cancer survivor do not go well together. But if I were to agree to this “wedge” being done, admittedly as some of my other fellow long term survivors have had to face, and it was determined to have been cancerous, I have two concerns. The first would be complications from that surgery, a real risk. The second, what would be pursued following the surgery and confirmation and cancer? Preventative chemo? Preventative radiation? Do you see where I am going with this?
I make all of my decisions based on facts, medical opinions, experiences of my fellow survivors, and just as important as all of them, my hunch or gut feeling. According to the National Institute of Health (the NIH), an “indolent lung carcinoma” is a slow-growing cancer, so simply that it is possible thought cancerous, not likely to be cause of death in one’s lifetime. And given my health, and likely shortened mortality due to my issues, a factor that definitely plays in my favor.
So if I were to allow the doctor to do the wedge, and it were confirmed as cancerous, what would be next and then would I potentially follow the same path as my father with complications?
I spoke with other doctors on my “team,” and we are all in agreement that I am okay with my decisions to take the position I have, to leave well enough alone, and just continue to watch it. Another CT scan has already been ordered, and a PET scan is being pushed as well since I am not agreeing to any kind of surgical diagnostics currently. And I am good with my decision. Which is what contributed to the end of my last post, and having the discussion with my daughters. Being adult age now, they need to understand what I have gone through, and what I deal with. And they needed to be assured, that even with this news, even if slightly comparable to their Grandfather’s lung cancer, my situation is different, and so is my decision.
I am not sure how much more luck I have having gone through everything I have, but my daughters have only known me to get through all that I have. And they expect this to be no different.
We shall see in the Fall.
Paul's Heart 