Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

22 Feb 2021

The 6th Sword Of Damocles, And There Are More


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.

 

 

Posted in Cancer, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
21 Feb 2021

Pandora, Damocles, And Thomas Hodgkin


I always hated these questions on tests in school.  But here we go.

Which of the above does not belong?

A)  Pandora

B)  Damocles

C)  Thomas Hodgkin

D)  They all belong

The correct answer, is D.  They are all related in one way or another, at least in the lives of some.

If it were not for Thomas Hodgkin, one of the top English pathologists, I would not be writing “Paul’s Heart” right now.  Hodgkin of course was the discoverer of Hodgkin’s Disease in 1832, now referred to as Hodgkin’s Lymphoma.  Hodgkin wrote about the disease in a paper called “On Some Morbid Appearances of the Absorbent Glands and Spleen.” (source – Wikipedia)

Spoiler alert, my diagnosis of Hodgkin’s 32 years ago, included a swollen node (often referred to as a gland), and full involvement of my spleen, which had been removed leaving me unprotected from being able to fight infections and other illnesses, a condition called “asplenia.”

Another unknown fact about Hodgkin, is that he was a big time believer in preventative medicine.  Of course in the mid-1800’s, this was what would have been considered “progressive” thinking.  In 1841, Hodgkin published the book, “On the Means of Promoting and Preserving Health,” available on paperback through Amazon, where he noted his research on muscle fibers, red blood cells, and appendicitis.

That pretty much sums up, very crudely, the man my life has been unwillingly “committed” to for the last thirty two years.

Treatments for Hodgkin’s Lymphoma were discovered over half a century later around 1894, in the form of “Fowler’s Solution.”  This solution had actually been around decades earlier, but was found to have an impact on Hodgkin’s Disease.  Not-so-fun-fact about Fowler’s Solution?  It contained arsenic which we all know is a bad, bad, bad thing, in large quantities anyway.  In smaller amounts, it was considered a tonic, medicinal.  (source – drugstoremuseum.org)

Eventually, advances in medicine would lead to other treatments including radiation therapy, and chemotherapy, each with their own levels of toxicity.

So, two facts to remember as you continue on with this post.  One, Thomas Hodgkin was a big believer in preventative medicine.  And two, poison was used to help treat Hodgkin’s Disease early on.  These are two ironies that will be revealed later on.

According to Greek mythology, Pandora was the first woman created by Zeus, a tool of wrath, responsible for releasing all ills upon the world.  Pandora’s name meaning “gifts” and “all.”  Pandora was created to punish Prometheus for stealing fire from the Gods, giving it to mankind.  Before leaving the Pantheon, Pandora was given “gifts” from the Gods to take with her, that she kept in a jar.  She had been told never to open the lid of that jar.  She married the brother of Prometheus, Epimetheus, and had a daughter Pyrrha.  And just as in the tale of the Garden of Eden and the apple, Pandora, got curious, took the lid off the jar and released all the evils into the world.  She realized what she had done, but it was too late. (source – ancient.eu/Pandora)

Okay, so now you are thinking, the Hodgkin guy makes sense on this blog, but what does Pandora have to do with anything?  I am not done yet.  There is one more answer to be made, Damocles.

Damocles was a “courtier” to King Dionysius II, a tyrant of Sicily.  Damocles felt that being a king was an easy job, that anyone could do it.  And that is where the story of the “sword of Damocles” came about.  The king offered to switch places with Damocles for one day, and of course, Damocles thought all the riches and perks were great, until he noticed a sword hanging over the the throne, perilously held by a single thread of horse tail.  This analogy described the perils of being a king that could occur at any moment, without any warning, but you knew it was there. (source – mussaad.medium.com/the-sword-of-damocles)

Now, allow me to put them all together.

In 1988, I was diagnosed with Hodgkin’s Disease.  I was treated with high dose radiation (40 times the life time maximum exposure), and some of the most toxic chemicals, including one used by tyrants like Sadaam Hussein used in a gas form to kill is citizens in Iraq.  These treatments were proven successful, and approaching thirty-one years out, I am proof of that success.  But…

Remember the progressive researcher and discoverer of Hodgkin’s believed in preventative care, yet, upon completion of treatments for Hodgkin’s, except for some follow-up appointments for a brief period of time to make sure the patient stayed in remission, there was no preventative care.

And though I am aware of thousands of other long term survivors of Hodgkin’s Disease, we were all in the same boat, just chugging along, until…

In April of 2008, I was discovered to have had a major blockage of the main artery to my heart, referred to as a “widow maker.”  It is called that for a reason, you do not survive the pending fatal heart attack that is going to happen.  People are diagnosed with this condition all the time, usually attributed to diet, exercise, physical condition, etc.  My situation was different.  My blockage was caused by progressive scarring from the extreme radiation I had received eighteen years earlier.  Bottom line, I was the “luckiest son of a bitch on the planet” according to my cardiologist.

But then, it was recommended that I see this doctor, who specializes in Hodgkin’s survivors and issues that developed because of their treatments.  His name was not Pandora, but it may as well have been.  It was then that I became a patient in the survivorship clinic at Memorial Sloan Kettering Cancer Center.  I was not treated there, but evidently I was a perfect candidate for researching, and treating potential side effects caused by my treatments.

Yes, Pandora’s Box had been opened.  Not only my heart had been affected by treatments, so were my lungs, my bones, my endocrine system, my stomach and esophagus, my muscles.  The list goes on, that I now have more than a dozen issues that have been diagnosed, anything else, just not determined as a priority right now.

Just as Thomas Hodgkin believed in preventative medicine, being in this survivorship program, put me in to the preventative path, sort of preventative.  There is no preventing the things that have happened, and will happen to me.  But they can be managed, and hopefully dealt with before they become as serious as my “widow maker” was.  Well, most of them anyway.

As I said, there are more than a dozen issues that are being watched.  And here is how that works.  Because of all the damage that has been done, correcting these things carry their own risk, some dire.  Therefore, some of my issues must wait to be dealt with, you guessed it, until they reach ” widow maker” status again, that the risk of doing nothing, now outweighs the risk of doing something.  I have more than a dozen swords of Damocles hanging over my head right now.

As a cancer patient, I have been told many times, “you’re done with treatment, just get on with your life.”  And after all of the procedures I have gone through in my survivorship, I am told to “just get over it” and enjoy life and stop looking for all these things.

I cannot do that.  And neither can so many others.  One open heart surgery is bad enough to go through, that to do another, conditions need to develop that they are bad enough, forcing the doctors to do something, either way at this point, one risk more than the other.  The sword of Damocles.  In medicine, it is referred to as Damocles Syndrome or commonly known as “waiting for the next shoe to drop.”

I have had two heart surgeries, and there will be third some day.  I have issues with my lungs, that I do my best to live with, but there are unidentified spots, that are being watched to see if they turn to cancer.  I have a condition called “Barrett’s Esophagus,” a pre-cancerous condition that could lead to esophogeal cancer.  An additional condition with my esophagus, called a Zenker’s Diverticulum has caused multiple episodes of aspiration pneumonia, including the fatal condition of sepsis.  I have a higher probability of bone fractures and other cancers.  The muscle loss I have is obvious, and I am so susceptible to illnesses, yes, including Covid19.  Having one sword held over my head with one strand of horse tail is bad enough, but having all of these other swords, it can be overwhelming.

As bad as this can all sound, it is the awareness, the support, and the progress that continues, that makes it possible for me to claim the status as a long term cancer survivor.  On March 3, I will mark 31 years since my last chemotherapy injection.

So yes, the answer to the question, is D) all of the above.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
20 Feb 2021

The Difficult Talk


One of the most difficult talks to have with your child, is that when it concerns death.  Experts have all kinds of opinions on what to say, when to say it, the do’s and don’t’s of what to say to children.

My own memories as a child and dealing with death, I do not have many memories of funerals until middle school age, one particular Christmas break.  Four family members had passed away over that one week timespan.  I recall it sending some of my “older” relatives into a tailspin, often making flippant comments about their “time.”

Over the decades of my survivorship, I have said goodbye to many fellow survivors who either faced insurmountable further challenges because of theirs health, or their bodies simply could not take anymore.

Personally, I have dealt with two major deaths in my adulthood, that to this day still leave a hole in my life.  The passing of my grandmother, and my father.

I was obviously well into my adulthood when they both passed on, so besides dealing with the emotions of the loss, I was able to process and prepare for when these events would happen.  It does not make it hurt any less.  I am fortunate that I had both in my life as long as I did, and did not have to deal with the sorrow as a child.

My daughters have been fortunate not to have seen or heard of many deaths either, that they can recall.  The closest family member to them, was their Uncle Mike, who was definitely a “fun” uncle with them, until his passing from ALS (Lou Gehrig’s Disease).  But again, they were so young to have had the awareness of what had happened to their favorite uncle.  Today, they do still get to hear wonderful stories about him.

But as my daughters have grown, they understand that they have some friends, who have a tragic story, having lost a parent while they themselves are still a child, a loss so unimaginable as a child, to never see their mother or father again.

My daughters are very empathetic and sympathetic, so they grasp the tragedy and the sorrow.  They also know that they are fortunate to still have both of their parents.  As they are older now, however, they understand more about my health issues related to my late health issues from my cancer treatments for Hodgkin’s Lymphoma decades ago.  On many occasions, the situations could have resulted in never seeing this post.  I have seen their friends live with and occasionally struggle without having their deceased parent in their lives.  And as I face each challenge, that is the last thing I want to do to my daughters.  As I lay on any hospital bed, I make sure I let every doctor and nurse know, they need to make sure that I pull through.

Through family, my daughters fortunately have not had to deal with death.  In school, among friends, they have been fairly isolated from that as well, though there has been a classmate or two over time who has died, their personal interaction had been limited, so the emotional toll was not as great.

I received a text yesterday from my younger daughter.  Evidently word had spread, via social media, as her former guidance counselor in middle school had passed away.  Details are unknown, so I will not speculate so as not to be disrespectful.  But social media being what it is, I reached out to a few people I knew that would know if this was indeed true.  Sadly, it was.

I spent a lot of conversations with this man, seeking help for my daughter as she progressed through middle school, along with the challenges of dealing with a divorced dad who in spite of not having custody, was still involved in his daughters educations.  He spent a lot of time, guiding her in decisions on course selections and some other struggles.  In other words, this was someone who passed, who she personally interacted with in her older childhood years, likely to remember.

I told her that it was true, but we did not have any further conversations.  I take it, that there were “stories” that she had seen, but did not feel the need to question any of them.  But there was one situation that I do not think she is aware of, but I am.  And if she were, it could likely have a bigger impact on her that I do not wish upon any child.

Besides being popular among students and other staff, his passing left behind a wife, but also two children.  Again, children who would grow up without a parent, just as some of their friends have.

I try not to burden my children with how serious some of my health conditions are, or how they are corrected, because I do not want them concerned with “what if.”  For now, my children remark how “tough” I am, and have no issue boasting that I am a cancer survivor.  That is what they know.  That is what they expect.  And that is why I do all that I can for them, and to make sure that I am always available to them, and to be there with each milestone they have.  I never take any day for granted, as I am sure neither do they.

Posted in Adoption, Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment

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