Paul's Heart

The Difference A Year Makes

To say I have a lot of experience in medicine and hospitals, is an understatement.  The majority of time has been as a patient, but I have also spent my share of time as a caregiver.

The one thing that is most important for most patients, is emotional support.  Yes, caring and empathetic nurses and doctors are great, but those closest to you, family and/or friends are just as important.  You show up to an appointment for surgery or treatment, and you might have your spouse, a parent, or someone else close, to help comfort you after it is over.  This is almost as important as the event itself.

As I said, I have spent a long time in medicine, so I know this drill very well.  But instead of reflecting on my lifetime of experience, I will just make note of the last two years.  To be in full disclosure, most of my medical events and emergencies, I was pretty much on my own handling the situations.  To show the diversity that I am trying to present, I have two examples.

A couple of years ago, I was rushed to the hospital with chest pains.  Fortunately, it ended up being nothing.  But, having support, or a health advocate along, made a huge difference.  In the event I would be able to communicate, they possessed the necessary information medical personnel would need to know about me before treating me (due to my late health issues from my treatment for Hodgkin’s Lymphoma).  This individual was there from the time I arrived, and eventually moved to a room for observation, until I was released.

And then, there was the second heart surgery I had just before that ER trip.  My health advocate was there before the surgery, during the surgery, and when I came to.  The next day, my advocate came and picked me up to transport me home.

Fortunately, my visits to the hospital have decreased over recent years.  I did not need to make any trips to the hospital since then.

And then Covid19 hit.  A trip to the hospital would never be the same.  While I have not been to the ER, I have heard that loved ones are not even allowed into the Emergency Room area, at best, waiting in their cars in the parking lot, for a phone call from inside, updating them on the situation.  Once the patient is dealt with, and either released or moved to a room, only then can the loved one be present.

As I mentioned, I recently underwent a major surgery, again, due to my progressive health issues from my treatments for Hodgkin’s.  I am used to going through my experiences mostly on my own.  But this is the first time, I was being denied having that support with me, at least in the pre-surgery stage.  There is a calmness that can be provided to help with the nerves, especially during such a critical surgery.  And for once, I had an advocate that wanted to be there.  But was not allowed.

After clearing through a rapid Covid test, I took an early morning Uber to the hospital, alone.  Again, in the past, this was never a thought.  But as I walked into the hospital, alone, I soon discovered why, these kinds of restrictions are in place, and why.  I went through screening, and then went upstairs to the reception room, waiting to be called.

My advocate, would remain at home, waiting for updates to come, prep for surgery, start surgery, completion, and post op.  Once I was moved to my room for recovery, then my advocate was allowed to come to the hospital, go through screenings as well, and spent time with me, as well as gathering more information about my upcoming days of recovery.

The main company I had, were the various nurses.  I will always sing the praises of these angels (as well as point out the one or two I have had that were flat out bitches and should not be nurses).  It seemed that almost all of my nurses were in the field barely even a year, definitely less than two years.

I have known many nurses over the years, and I am sure so many have stories and memories of their careers, good and sad ones.  These nurses were great.  I never got to see their faces, because they were always gowned up with masks.  But I knew they were young.  It is hard to imagine, as I am sure for them, they could never have thought their first years as a nurse would be dealing with the devastation of Covid19.

In talking with them, they shared the memories of happy endings, and tragic ones.  They spoke of the efforts they did to comfort both patients and their families, coordinating so that final days would not have to spent alone.  They themselves, because of their vocation, put their lives on the lines every day.

Not to be left out, even the custodians and food service people that came by, took the precautions.  And you know what?  In a building that you would feel would have the highest risk for Covid with patients being treated for it, I never felt more safe than I did there, and the transmission rates are lowest in most hospitals because of these precautions.  It will be a while until I have this confidence to return to dining in experiences, movies, and concerts again.  I know that day will come.  I can wait.  The alternative of me contracting Covid, with the warning from my doctors (not the media), I would not survive.

I bring this up for a reason.  We are all tired and fatigued with the restrictions on our social activities and ability to travel.  False comments on sacrifices recommended to not only stay healthy but somehow try to reduce the severity of the spread of our nations second worst health crisis, and the push to “open” everything and ignore simple mitigation efforts only show that we will be dealing with Covid a lot longer.  The problem was that the crisis was not handled properly from the beginning.  We know this.

I do believe this crisis will come to an end, and we will have learned a very tragic lesson, and hopefully never repeat it.  Or at the least, we have learned how to “live with it” via herd immunity.

In any case, there needs to come a time, that loved ones and other support advocates are one day allowed to accompany patients again.  Cancer patients, surgery patients, and even just doctor visits, that company is just too important to the success of the patient.

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.