Paul's Heart

Grieving Like It’s Groundhog Day

Nope.  It still hurts this morning.

Yesterday, I discovered that another fellow long term Hodgkin’s survivor passed away.  She is not the first.  I know she will not be the last.  It happens several times a year, too many in fact.

Like others that I have personally known, I will write a special tribute for her.  But I do not want to tarnish the honor of her memory with the feelings that I have this morning.  I am not sure why I am feeling like I do this morning.  Like in the movie “Groundhog Day,” I have seen this day many times.  And no matter how many times you relive the day, the outcome does not change.  The friend is still gone, and you are still left feeling, why?

No, this morning my feelings are more complicated.

My friend did not pass away recently.  And that is a new category of frustration for me, why that happened.  It was the beginning of 2020, actually do not need to do any more of an intro as the number of the year tells where this is going to go, and nothing out of the unusual, I was having a conversation with this fellow survivor, as I have many others.

While there are a multitude of issues my fellow long term survivors deal with, many of the same, are experienced by a lot of us.  And this particular conversation that I was having, was something that I had personally experienced.  One of our common issues was multiple bouts of pneumonia, complicated by our lung issues from treatments for our cancer.  It was not the “standard” pneumonia, but one called “aspiration” (I will do a post on this in the near future, I promise, I was going to get to it eventually).

I shared my experiences and possible suggestions for her to inquire with her doctors to help assess her condition better, and possibly mitigate the recurrences of these pneumonias.  It was a normal exchange like with my other survivors.

There was supposed to be a “gathering” of us long term survivors later in the year, and we were both looking forward to meeting each other officially, along with the other 98 attendees, all of us long term survivors of Hodgkin’s Lymphoma.

Then, a month later, Covid hit.  And nearly everyone, long term survivor or not, got distracted.  We got distracted with the virus, the politics around the virus, the impact of the virus on our personal lives.  Sure, we kept on going with our day to day, but things fell by the wayside.

March 17th, 2020, the last date I recall before officially deciding, needed to make Covid preparations given my vulnerabilities.  March 15th, my friend was still making posts on Facebook.  But there was nothing after that.  She passed away on the 17th.

We both belonged to various social pages for our long term survivor issues.  But her absence had gone unnoticed.  Besides Covid occupying our minds, it was not unusual for many members to not be as involved on our chats, when we were not dealing with a pressing issue.

But if one of us was dealing with a current crisis, you can bet, myself and others would be giving a stern lecture, the importance of a survivor’s mentality, to know that a fellow survivor is doing well following an illness or procedure and to take whatever steps necessary to make that happen.  Many have been on that receiving end from me.

As long term cancer survivors, we know our frailties and vulnerabilities.  We know the extra precautions that need to be taken.  We have faith in our doctors to get the job done.  Unfortunately, it is the recovery and follow-up care/concern that lacks, when opportunity has the chance to go wrong.  And I have said goodbye to too many at this stage.

I am frustrated with myself, that during the Covid crisis, I have obviously not been paying the usual attention to my world of survivorship.  Things got lost.  I have no idea what happened with my friend and fellow survivor.  By all accounts, it looks like it was sudden whatever it was.

But she was five years younger than me.  Like me, she had two young children that she cared for.  And like me, she loved life, in spite of the various health issues we had in common, she found a way to deal with them.  That hits home with me.

And now she is gone.

Understanding Radiation Limits

I sure learned a lot more about radiation than I had ever planned on, past my knowledge of Dr. Banner and the Incredible Hulk.  And if you are one of the fortunate, to have never had to deal with “treatment” radiation, the most conversation that you probably have ever heard, came from a grandparent, warning you for standing too close to the television or in front of a microwave while it is running.

On average, the non-cancer person will only be concerned about radiation from the sun, and if healthy, an occasional dental x-ray.

Recently, a fellow cancer patient questioned the safety of having a CT scan done, due to radiation levels previously exposed to, and exposure from the CT scan.  In the world of long term cancer survivorship, where patients like me, were subjected to horrific levels of radiation, doctors prefer us not to be exposed to any more radiation than necessary at this point.

We need to start at the beginning, and fortunately, with science not being one of my strong suits, the explanation is guaranteed to be simple, and from what I have learned and experienced.

Ionized radiation is what is used in medicine (and dental).  In its smallest form, it is measured in “millisieverts.”  For my fellow cancer survivors, they are probably going, “wait, what?  Mine was measured in grays (or rads).”  And they would be correct.  Just hold on a second, don’t get ahead of me.

According to the NIH, recommended exposure to ionized radiation is 20mSv (millisieverts) per year, and 400mSV per lifetime.  Again, I know cancer patients are like… “but…”.  One single dental x-ray produces an exposure of .007mSv.  So, if all you have to worry about is annual dental x-rays, you are pretty safe when it comes to exposure.

Now, if you need a chest x-ray, there is no need to panic either as far as annual limit with an exposure of .1mSv of 20mSv.

Women are regularly recommended to have a mammogram done.  That exposure is .4mSv.  So far, so good, right?

A CT scan, depending on what part of the body that is being scanned, can range between 1 and 10mSv.  A bit more serious, but still, within annual limits if only done once a year, and CT scans are not usually done frequently or repeatedly, especially given the higher exposure.

An exposure of 1000mSv is scientifically proven to potentially lead to cancer in 5% of the people exposed.  This was from a PMC document written by Mayo on the NIH website in 2010, and clearly only makes note to a low dose exposure.  For those of us with higher exposure, the risk is much higher.  Our oncologists even told us so.  The following link has current and more detailed information, also a PMC from the NIH, but from Radiation Oncology Journal written in 2018:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6074073/?fbclid=IwAR2NE_I8EWFm734mI8ZeLuB5CIXmyhlUTecywyOkdaz8_L9rLYrhqSeGIdU#__sec1title

Now, what about the “long term cancer survivor”, those of us treated with radiation back before the turn of the century?  We do not hear of radiation being explained by numbers of “mSv.”  We hear of a term, “gray” or “rad”.  I am not getting any more technical than explaining “rad” means “radiation absorbed dose.”

Personally, I know I was treated cumulatively with a total of 4,000 rads (or 40 grays) of ionized radiation for my Hodgkin’s Lymphoma.  Here comes the mathgeek part, converting rads and grays to mSv.

100 rads equals 1 gray (so my treatment was 4,000 rads or 40 gray)

1 gray equals 1,000mSv

40 grays equals 40,000mSv

4000 rads equals 40,000mSv

Remember, back in the beginning, the recommended lifetime maximum of ionized radiation according to the NIH, is 400mSv.  That means, that in 1990, a total of 30 treatments of a cumulative total of 4,000 rads of ionized radiation, I received 100 times the lifetime exposure.

I am not alone.  I know many other survivors, some with double the amount of exposure.  Some, were treated with even more cruel and extreme manners of radiation, such as cobalt.

Mention our exposure to radiation techs, or even another field in radiation, such as nuclear energy, and you will see looks of horror and often tears.  Because even they are aware, and are prevented even working in these fields from ever reaching that exposure level.  But this, is what led to remission for most of us.

How long does the radiation last?  That is explained using the term “half-life,” the length of time it takes for half of the atoms to disintegrate, in other words, not to have any affect on the body.  Many of the common exposures do not last more than seconds, if not minutes.  And it is way out of my lane to try and figure out the half-life of my exposure.  So, I let a professional do it for me.  He was unwilling to give me an answer.

Every year, my employer required us to undergo “radiation training,” mandatory to meet OSHA requirements.  Probably 95% of the room attendees snored through most of it, except for at least this nerd.  I knew there would be questions at the end, and I had one that I wanted to ask.  And I asked it every year, well, because every year, was a different instructor.  So, when the time came,

“Yes, I have a question.  What is the half-life of 4,000 rads of ionized radiation?”

The look on the instructor’s face was if he had just witnessed me commit a heinous murder.  He responded, “that’s impossible.”

My fun was on now.  You see, I understood, that levels like I was exposed to, were no longer being used.  But the fact is, there are millions of us in the world, who were exposed to this.

“I realize that sir.  But hypothetically, say it was possible to have that exposure, what would the half-life be?”  I had caught the fish, I was reeling it in.

“It’s impossible.  No one would ever be exposed to that.”

“I know, but what if someone would be exposed to that.”

“It just wouldn’t…”

I interrupted, “I was exposed to that.  How long is the half-life of 4,000 rads of ionized radiation?  I was exposed to it in 1990 (ten years earlier).”  I knew the answer.  I just needed to hear it from someone who should know.

And then he said it, “you would never outlive the half-life with that amount.”  Normally, this kind of stunt would be a real buzz-kill moment, but 95% of the room was already asleep, so they missed it.  But the instructor and I knew the truth.

I won’t bother getting into all the late side effects that I have to live with because of this radiation exposure.  I have written about them extensively on “Paul’s Heart.”  My heart, carotids, lungs, hair, and more, all permanently, and progressively continue to grow in concern.  On the plus side, I am not one of the 5% who have developed a secondary cancer (yet), though I did have one close skin cancer false-alarm.  My other health issues are enough to deal with.

What prompted this post, was a simple question on one of the forums I am involved with, “should I be exposed to a CT scan given my radiation history?”  None of my doctors rush to schedule me for any kind of scan or x-ray because of how much I have been through.  But seriously, is a dental or chest x-ray really going to cause any more problems given what I received?

I can empathize with the person who posed the question.  I have several unidentified spots on both my lungs, courtesy from my radiation treatments.  And it is easy to assume, that some day, these may turn cancerous.  But there is only one way to find out other than biopsying all of them, and that is a scan.  The dilemma of my doctors, balancing the risks of more radiation exposure to discovery of an earlier cancer diagnosis.  My father died from lung cancer (though his was smoking).  Catching cancer early makes a difference.  And if me taking an extra 10mSv of radiation to the rest of the 40,000mSv I have already had, I will take my chances if it means catching something earlier.

Still, it is up to the individual to weigh the risk.  Not all of my fellow survivors share my reasoning.  To some, they have had enough, no matter what.

But at least you have a little better, and simpler understanding, especially when it comes to the world of long term cancer survivorship.  We may be here decades after our cancers, but our bodies have been put through hell.  And none of us to my knowledge, have developed superhero strength to save lives and fight crime.  I also do know for a fact, I do not interfere with garage door openers, radios, and televisions.  And I do believe I have a glowing personality.

Fortunately, medicine and science have learned to do more, with less radiation exposure when it comes to treating cancer.

Diagnosis: A Case Of Jr. Mintosis

In an episode of Seinfeld, the characters Jerry and Kramer are seated in an operating room theater observing a surgery.  Admittedly, I had not been paying attention to the episode to understand why a comedian and a hyperactive goofball would have been attending a surgery.

Being a “theater”, Kramer felt the need to have a concession, to eat while watching.  His selection?  A box of Jr. Mints, a popular staple in theaters, at least when I was growing up.  Of course the two are carrying on a conversation, and carrying on, when a mishap occurs.  A Jr. Mint candy flies from Kramer’s hand landing below into the patient’s surgically opened cavity, with the surgeon down below unaware of what happened.

While this was a comical bit, and it is highly unlikely that this would ever happen, mistakes can happen.  Back in the 1980’s, mal practice lawsuits ran at all-time high threatening the extinction of doctors, no longer able to afford their insurance.  Admittedly, things could go wrong during a procedure, either as it occurs naturally, and yes, sometimes negligence.

My diagnosis of Hodgkin’s Lymphoma, was originally diagnosed as a “common cold.”  Now you may be wondering, “how the Hell do you mistake cancer for a cold?”  And it makes sense.  But here are the facts.  Hodgkin’s Lymphoma is considered a rare cancer.  Whereas your primary care doctors may recognize or suspect breast or skin cancer, Hodgkin’s is a lot more difficult to diagnose, especially if you are not looking for it.

Now, to be fair, I had only one symptom, a swollen lymph node.  Under normal circumstances, we get them all the time.  It all depends on how much they swell, but that is what they do when you are battling an illness.  I felt fine otherwise, and was given an “anti-inflammatory” to help the node go down.  Once the medicine was finished, the node flared back up, and some new symptoms began.  Bloodwork revealed nothing.  X-rays revealed nothing.  Only when I allowed them to biopsy the lymph node, they found cancer, Hodgkin’s Lymphoma.  Again, a rare cancer, and given all that I had to go through to get diagnosed, how could I expect my family doctor, with no special training in cancer, to have recognized that?

And if it were not hard enough for science and medicine to be 100% correct every time, there can be other factors that can confuse a situation.

For instance, my name.  I am named after my father, exactly.  With the exception of our title at the end of our name, I am a “Jr.”, our names are identical.  I became aware of that with my first traffic ticket, as the officer forgot to put the “Jr.” to my name, and the citation ended up being placed on my father’s record.

While the mistaken identity was funny at the time, in the future, it would become a very serious matter.

Two Paul Edelman’s.  Yes, our names are spelled identically.  But clearly there are differences.

At a follow up appointment for my heart issues, due to my treatments for Hodgkin’s Lymphoma thirty years ago, I was asked about my smoking history.  Immediately, I knew that they were looking at my father’s medical record instead of mine, one of the hazards of digitalized medical records through one system.  It was easy enough to point out to them, because my father had mentioned he smoked for fifty-five years, and I was not even fifty years old.  Confusing my record and my father’s record could be very problematic, each with our own extensive and extreme medical history.

Have you ever had one of these before?  If the answer is yes, then you know of the worst possible pain imaginable, a kidney stone.  You can see through the picture why they hurt so much, and depending on the size, determines how much pain, and how easily you can get rid of them.  Sometimes, medical intervention is required.

In my case, the local hospitals did not technically take care of kidney stones.  Instead, there was a “mobile unit,” that travelled from hospital to hospital.  And depending where the unit was that particular day, if you wanted relief, that is where you went.

I was not happy about where the mobile unit was going to be, as I had a close family relative die there, and it was not known as one of the better hospitals in the area, but I needed relief.  My stone was not going to pass itself, and I would need a “lithotripsy” to help eliminate it.  Simply explained, they were going to “blast” the stone to miniscule passable pieces, a fairly routine process.

I arrived at 5am, first patient of the day at the hospital.  I handed my ID and my insurance card over to the admin, who informed me that she would not be able to check me in because her computer was down.  After some thought, she decided to photocopy my information so as not to delay my procedure.  And then she came back, the copy machine was not working either.  Now my horror.  I was going to go back into a surgical room, no identification on me, and I was going to be unconscious.  Fortunately, my doctor saw me before going in, and wrote very clearly on me with a “sharpie” my name and what was to be done.”

Once I came to, all I had to do was pass the remnants into a bottle for them to filter the contents to test the make-up of the stone.  Wouldn’t you know, they flush the bottle down the toilet.  I must wait until I have to urinate again, to see if I produce any more remnants.  When I do not, I am discharged, unattended, to wait on the curb outside of the hospital for my ride to pick me up (as opposed to the ride actually being the one to check you out since you were under anesthesia).

Then, I come to find out how much trouble my name can actually cause, that I might just be mistaken for a dead man, my father.  It turns out, I could get accused of voter fraud, if I do not use the “Jr.” after my name.  Without doing so, that would indicate my later father would have voted, in spite of him having been dead for years, and it was actually me casting the ballot.

Between medicine and my namesake, I have a lot to keep straight.  I am a strong advocate in health care for many reasons, mainly to help others who do not feel as if they have a voice.  And often, it is by my example that someone else learns how important it is, to advocate for themselves whether it is for their care or other necessary support.

No one pays more attention to their medical chart than I do.  I have a backpack full of all my documentation from my cancer diagnosis to when I first realized that what cured me, is also destroying my body.  I really need to get it all put onto a thumb drive to make it more convenient.

But I learned advocacy in health care is more than just fighting to get the care you need.  It is also about keeping your records, and your procedures straight.  Imagine, your doctor tells you that you need to have something done in one part of the body, pertaining to a certain body system.  Mentally, you prepare for that pending surgery.  You are not worried about your doctor’s hands, he will do what he does best.  There is a step though before you get to the operating room, between when you have the consult with the doctor and surgery day.

A clerk must enter and schedule the procedure… accurately.  Since we are in the digital age, medical procedures are no longer entered by description, but by a code of four to six numbers.  What would happen if one of the numbers being entered, was entered incorrectly?  Obviously, you would have a different procedure scheduled.  And if you did not notice it before the surgery date, you could be in a state of calmness that may not alert you to any questions that would bring this error to light.  You go in for one procedure, and end up having something totally different done.  Unless… you catch it first.

Mistakes can happen.  I do not believe that any doctor or nurse gets into medicine to be negligent.  But even if by accident, the errors can come at a high cost, perhaps the ultimate.  You do not need to have a college degree to confirm information.  Just a good set of eyes, and a healthy dose of suspicion.  And if your gut is telling you something is not right, then deal with it.  That is what advocating for yourself is all about.