Paul's Heart

My Multipurpose Mask

To look at the picture, and realize that I live in the sunny state of Florida, you could ask yourself what in the world am I doing wearing a ski sleeve?  A perfectly legitimate question as southwestern Florida typically does not see “cold” (by Florida definition, anything below 70 degrees until January and then we wear socks with our flip flops).

In 2020, as I take my daily walks, I normally would be wearing a standard cloth face mask as many people are wearing to protect themselves from Covid19.  But this morning, I woke up to a chilly 48 degrees (it was cold enough without hearing the wind chill was in the 30’s).  My cloth mask was not going to cut it for me this morning.

My green ski sleeve came in handy decades ago on the many mountains I got to ski when I was able to.  Living in the northeast of the US most of my life, it also helped a lot when it came to the frigid temperatures of winter.

But as the close of the first decade of the new century approached, a condition that had been developing over the years, courtesy of side effects from cancer treatments for Hodgkin’s Lymphoma.  It is kind of difficult to describe, as it is more of an onset, more than an “attack.”  The condition feels similar to an asthma attack, yet does not respond to asthma medication.  The duration lasted depending on the weather conditions and it did not matter hot or cold.  Recovery was even determined by the climate, indoor and outdoor.

Caused by damage resulting from radiation therapy and the drug Bleomycin in my chemo cocktail, I have several diagnosed issues with my lungs.  I have something called radiation fibrosis, restrictive lung disease (currently at 76% capacity – my lower left lung lobe is no longer functional or “dead”), and I have several unidentified spots on both lungs, being watched for potential development into lung cancer.

High humidity, cool windy air, and cold temperatures all produce the same effect with my lungs, almost a “hardening” or loss of flexibility, making it difficult to breath, often resulting in me taking rapid short breaths as I struggle for air.  The only thing that helps me resolve this, is getting into a climate controlled environment, either air conditioned (if dealing with heat and humidity), or at least a comfortable low 70’s internal temperature.  Once inside, I must sit, and slow my breathing down, allowing the comfortable internal air to get into my lungs.

How long these episodes would last would depend.  From my house to the car, it was not a problem.  But from the ten minute walk from the parking garage to the building that I worked in, was problematic.  There were other contributing factors as well, such as stress load, if I was starting my day off in a bad way, that would also impact my breathing.  Once inside, it would take anywhere between 30-45 minutes, though there were at least a handful of episodes that lasted over an hour.

Complete pulmonary function testing and imaging only confirmed that I do have limited lung capacity and functionality.  These episodes are not fun, and definitely not convenient, especially when you have a timeline you have to meet.

Having the knowledge that I was likely to face an episode, and that I knew how to deal with one if it occurred, and I could count on it to be resolved, the only thing left to do, was to prevent it.

When it came to dealing with heat and humidity, there was not much I could do to avoid the conditions, other than remaining indoors when conditions were not favorable.  Definitely not convenient, but my employer appreciated the fact that I spent a lot of time, reliably, working overtime hours just so that I did not need to take the long, hot, and humid walk to my car.  At home, in spite of having a cozy inground swimming pool, there was no relief as long as my head was above the water, and I was breathing the hot and humid air in.  There was little I could do, other than just follow my plans to deal with the episodes when they came on.

Cooler weather was a different story.  Though my ski scarf had spent its last many years in storage, I began to use the scarf to filter the cooler air before it got into my lungs.  But the image of me wearing this scarf, when the temperature was only hitting below sixty degrees (with heavy wind), or below fifty degrees or lower without wind, I got my balls busted a lot by my co-workers.

You see, I was known for not dressing appropriately for the cold weather, wearing shorts as late as January, in 20 degree weather.  But it had gotten to the point, with either cool blowing air, or frigid air, I needed to do what I could do, to prevent these episodes from happening.  And it helped.

So, years ago, I moved to one of the hottest and most humid states in the country, an odd move given this lung condition.  There is no ideal climate for me to live in.  But during the hottest summer months, I do spend most of my time indoors, in the air conditioning.  My time spent outdoors if I must, is limited usually from car to building, and almost never during peak heat and humid conditions.

But during the Fall and Winter months, unlike back in Pennsylvania, I have reduced the frequency of the colder attacks nearly 85%.  The most extreme temperatures I normally have to deal with, end up briefly in the fifties at most two weeks, at which I pull out the ski scarf.  It does come in handy for sure whenever I have to travel north during the colder months.

Yes, it looks odd, wearing a ski scarf in southwest Florida, but it serves its purpose, not for how it was intended.  Warmer temperatures will come back in another day or so, and then it will be back to the cloth mask again to protect me from exposure to Covid19, another unintended use for those masks.  Just like my ski scarf, it serves its purpose.

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.