Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

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.

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.

15 Blessed Years


On February 5th, 2006, I landed in Hong Kong for my second journey in parenthood.  Having gone through this almost two years earlier, while I was familiar with the process and things to expect along the way, I would soon realize, that I would learn even more about where my daughters were from, important so that I could let them know what it was like.

On February 6th, Emmalie was placed into my arms.

This was one of the events that was very familiar to me, and why I express, this moment, and the adoption of my older daughter, being the top two moments of my life, both their adoptions tied in the number one spot.

I was in China during the tail end of the Chinese New Year, Year of the Dog.  Fireworks cracked day and night celebrating the lunar new year.  Although I was pretty screwed up sleep-wise from the 13 hour time difference, I had no problem sleeping through the nighttime celebrations.

This is a picture of a new hospital across from the hotel we stayed in.  It is the same hotel as two years prior for my older daughter, but two year prior, this was a hole in the ground.  A couple of days later, I would get to see Chinese medicine first hand.  Long story for this post.

One thing we did not get to do two years before, due to SARS, was travel.  This trip, we were taken to a village, very similar to where my second daughter is from.  It was a humbling experience to say the least because unlike those living in the city areas, here, there was no running water or electricity, floors were concrete, and the people who lived here, survived on bare minimum.

Other things we did included going to a temple.

A trip to the medical clinic at the US consulate to make sure my daughter was healthy.

Big sister also got to deal with the new sleeping/sleepless routine.

Pictured here with my daughters, are the two most precious people to me, the ones who helped create my family, Helen and De.  Normally they do not get to see the children after the adoption is complete, but by coming back to adopt my younger daughter, they got to see Madison again, who they had not seen since two years before.  They were so happy to see her and showered her with gifts.

She has a million different expressions that she can make with her face, and almost all bring a smile to anyone near her.  I describe her as my comic relief, because she really is such a funny daughter.

But if there was one thing for certain, I would not be here today, if it were not for my daughters giving me the will to keep fighting.  Having had cancer, it was next to impossible in the US to even think that I could become a father.  China gave me that opportunity no questions asked.

I have been blessed to see both of my daughters grow through their childhood.  This time of year always reminds me of those first days and how far we have all come.

 

Post Navigation