In my last post, I explained who Damocles was, and how the story of the sword of Damocles relates to that of a long term survivor of Hodgkin’s Lymphoma like me. So much so, that it has an official medical term, “Damocles Syndrome.” Simply put, “waiting for the other shoe to drop.”
In the tale of Damocles, the question was raised why there was a sword hanging over the king’s throne, held by only one strand of a horse’s tail, clearly a dangerous threat. And it had been explained that it was as a reminder of the perils that lay ahead, being a king, having power, that sword could drop at any time, just like harm could come to the king from anywhere. Hence, “the other shoe dropping,” and the life of a Hodgkin’s Lymphoma long term survivor.
I mentioned that I have more than a dozen of these “swords” (that I know of at least), and at least five have fallen previously. Recently, I had to deal with my 6th sword, one of the more serious “swords” or “shoes” in my medical record.
If you missed the prior post, for reference, feel free to go back and read it before you continue. Otherwise, in April of 2008, following emergency open heart surgery for a “widow maker” heart bypass, Pandora’s Box was opened. And most, if not all of the other health issues that were all attributed to my cancer treatments came out.
One of those issues, one I now refer to as a “Sword of Damocles,” was discovered upon an ultrasound at that time. My carotid arteries were showing progressive results of calcification/blockages, at the time, approximate 70%. That was the good news. The bad news was, they were not going to do anything about it at that time, because the risk of causing a stroke by performing surgery, was greater than not doing anything at all. Instead, we would wait. Wait for it to get bad enough that it would have to be repaired and the risk of doing nothing would now be greater than doing something, the “Sword Of Damocles.”
This is just one health issue of more than a dozen. I cannot tell you how many times I have been told to “just get over it” or “move on, enjoy your life, forget all this bad shit.” I cannot afford to do that. That does not mean that I do not enjoy my life. I do enjoy life, my way.
So, anyhoo, after twelve years, it appears the strand holding this sword had frayed to the point of a 90% blockage of my left carotid. It was now time to repair. Doing nothing would likely result in me having a stroke or worse. The next question, would be how to fix it.
Back twelve years ago, the main course of treatment was either medication or a procedure called a Carotid Endarterectomy, in which they would perform surgery on the carotid, and clear out the plaque causing the blockage. The problem, for survivors like me, the blockage is not plaque, it is a calcification from the progressive damage from radiation therapy for my Hodgkin’s Lymphoma. Medication would not help that either. The damage would progress until completely blocked. Additionally, because of the radiation damage to my body, bleeding and healing are both complicated potentially causing more issues.
Fast forward twelve years however, allow some research and progress, a new procedure had come about, called TCAR (Transcarotid Artery Revascularization). The problem with the old surgery, as pieces of plaque or calcification would break away, they would be carried to the brain, causing immediate damage. With TCAR (and this is a lot more technical than I am describing it), the blood is redirected from the brain, through an external line (think beef funnel) into the femoral artery in the groin. A stent (something thought not possible either twelve years ago), would then be able to be placed with a much lower risk of stroke and other complications. Recovery time is also much more quick.
With the input and approval of my personal doctors, I underwent this TCAR and have once again, re-secured that “Sword of Damocles”. There are potential complications that have to be follow-up for of course, I am used to that. But for now, that artery is flowing like it is supposed to.
Here is the frustrating thing, and really for all long term survivors. TCAR (and other current procedures for other issues) are not well known by doctors. Few and far between are doctors who know what to do with patients like me.
Prior to going through this procedure, I went back to my fellow survivors, remembering that many had faced carotid issues, but had not heard back from anyone on how they fared. Nor had I heard anything from anyone who had undergone TCAR. While I was clearly not the first one ever to go through TCAR, apparently I was going to be the first one in our circle to go through this procedure.
But others began responding to me, that they too were facing carotid concerns, so they were following me and my journey. One fellow survivor was on an immediate path, facing the older CEA method of repair. Upon hearing what I was going to go through, he sought a second opinion, and discovered that he was indeed eligible for TCAR also, and that would be scheduled.
This is the thing that frustrates me and ALL other survivors. WHY DOES ALL OF MEDICINE NOT KNOW OF THIS PROCEDURE AND THE NEEDS OF CERTAIN INDIVIDUALS BEING ITS ONLY POSSIBILITY?
Three weeks after my surgery, my fellow survivor was having his done. He had all kinds of questions for me, about pain, recovery, what to expect. While I am sure everyone is likely to have their own assessments and reactions, and me being known for being somewhat of a “baby” when it comes to pain, I assured him that I was doing well, minimal pain, and recovery going as expected.
It helps when you listen to doctor’s orders.
The good news is, he went through his TCAR, and is in that healing stage as well. I will keep in contact with him to make sure that continues.
But the moral for us long term cancer survivors that “healthy” family and friends need to understand about us, we cannot “just get over it” or “move on.” If we are lucky, we only have one sword hanging over us, but others have many more. And they are hanging by just one strand of horse tail. We need to be conscious of the danger we face, so that we can prepare, and if possible, prevent, a fatal event.