Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

No, I Don’t Glow… But I Should

I remember back in my childhood (late 60’s to early 70’s), getting warnings from my grandmother “Don’t sit so close to the T.V.” or “Don’t stand in front of the microwave.”  Today, we get warnings about excessive cell phone usage and brain cancer, as well as the big “sun exposure”.  These things all have the same concern in common, radiation exposure.  While there are things that are assumed that can happed due to exposure,  there are still many things unknown.

Then of course, there was the core problem at Three Mile Island nuclear power plant about an hour from my house.  A movie titled “The China Syndrome” chronicled a potential nuclear disaster.  Our world would experience just how serious nuclear crisis at power plants could be with Chernobyl and Japan.  And of course, there is the potential an previous use in warfare.

But under a controlled situation, it was learned that certain cancers could be cured, in particular, the cancer that I am now 28 years in remission from, Hodgkin’s Lymphoma.  And today, the dosages of radiation are much less, and more precise than what I, and many, many more were treated with.

This is a picture of a linear accelerator.  Not the one that was used on me thirty years ago, but similar.  With pinpoint precision, this machine shoots the ionized radiation to the specific tumor or cancer site.

To really appreciate how far treatment with radiation for cancer has come, I will refer you to treatment with Cobalt, something I have only heard of, from fellow survivors who were treated in the decades before my more modern treatments.

I was treated with the linear accelerator, however, unlike the fine-tuned procedure, I was treated with “scattered field.”  So, what does this mean?  Once the radiation entered my body, it scattered beyond the areas meant to be treated.  As I mentioned, radiation treatment was not just about the method, but also the dosage.

The comic superhero “Incredible Hulk” was created when Dr. Banner was working on a treatment with radiation.  He made the decision to test the process on himself, which of course went wrong, and as a result, the side effect, whenever he got angry, a metamorphosis occurred in his blood, changing his appearance and physiology to a creature of super human strength.  The problem was, Dr. Banner could not control or reverse what had been done to him.

In February of 1989, I laid on the table in the room with the linear accelerator.  On my first day, I laid down on the table.  “Tatoo” markers noted the spot to line up the cross hairs of the machine.  Lead blocks had been placed over my breast bone to protect my heart and spine.  In all, I would go through thirty of these treatments, lasting about a minute in duration.  Except, that did not happen.  The machine malfunctioned with me on the table.  I could not help but wonder if I was going to make the transformation into a giant, strong, green, super hero.  I was not given much time to think about that, because with the machine repaired, the treatment commenced.

Side effects for my treatments, were minimal, potential for pericarditis (inflammation of the lining of the heart), and perhaps a secondary cancer.  Truth is, long term studies were never done.  And with many Hodgkin’s survivors living beyond the magical five year mark, many would develop side effects that would end up teaching medicine, there was more that needed to be learned.  And in 2008, I would join the other guinea pigs in the research of long term side effects from treatments of cancer.

This is a picture of my death, or what should have been.  Radiation that I had received twenty years before, had remained inside my body, continuing to do damage internally.  My particular condition is called a “widow maker.”  Radiation scarring to the left anterior descending artery was about to be the cause of a fatal heart attack.  And without being followed up for my heart, something that was never a concern, I should be dead.

Instead, I am now followed up by some of the top doctors in the country for this cumulative damage from both radiation and chemotherapy long term effects.  And my body is riddled with these issues with more than a dozen other diagnosis.

But before this new health surveillance began, my doctors needed as much information as they could get about what, and how much I was treated with.  For the purposes of this post, I am going to just deal with the radiation.  It was revealed that I was exposed to 4000 grays of ionized radiation over the course of my treatment.  What does this mean to the average person without knowledge of radiation?  The limit of exposure today in general, are approximately 100 grays per year.  PER YEAR!!!  That means that I was exposed to 40 years worth of radiation in a 30-day period, well beyond a life-time limit.

To put this in perspective, I have two conversations to share.  The first, was with a friend who happened to work at a nuclear power plant who was curious about my exposure to radiation therapy.  By the end of the conversation, he was in tears when he heard about the level I was treated with.  Neither he, nor anyone who works in the nuclear industry is really ever to be exposed to the 100 grays per year exposure.  He knew, and I knew from his expression, this was something quite serious.

The other story, occurred during radiation training while working for my former employer.  We were required to take this training every year.  At the end of the session, the instructor would open the floor for questions.  I have to admit, I already knew my answer to my question, but as many around me doubt the seriousness of my side effects, there was a shock value to bringing my exposure limits public.  My question pertained to “half life” of radiation, simply put, how long radiation lasts inside of your body after exposure.  It amounts to the time it takes for half of the radiation to be gone.  Needless to say, the half life of exposure to a dental or medical x-ray pales in comparison to the radiation I was exposed to.  But I wanted to ask the question.

Me:  Hypothetically (I was being nice), what would be the half life of being exposed to 4000 grays of ionized radiation?

Instructor:  That would be impossible.

Me:  I know, but that is why I am asking hypothetically.

Instructor:  That would be impossible.  No one would ever be exposed to that level.

Me.:  But I was, twenty years ago.

Instructor:  awkward and heartbreaking silence

Yeah, I knew from his reaction, I am going to be dealing with this the rest of my life.  I have other radiation damage that will one day need attention, once it becomes more of a risk than the surgery to correct it:  mitral and aortic valves, both carotid arteries, muscle and bone damage, lung damage including spots on my lung, currently unidentified but being watched to develop into lung cancer.

It is for this reason, many of my fellow long-termers and I call radiation “the gift that keeps on giving.”  I just wish I could save someone with the radiation modification of my body like a super hero.  And no, I do not interfere with televisions, microwaves, radios, or garage doors.


Still Miss My Dad

Today marks 4 years ago, my Dad lost his fight with lung cancer.  The loss of my father is no easier today than it was then.  I can make a lot of sense why things occurred the way that they did from a medical standpoint.  But like many others who have been or are in this situation, the struggle is with the fairness.

There are not many photos of me in my childhood with my dad.  Unlike today where everyone is obsessed with photos to post on social media, everyone wanting to share their life stories, pictures just were not that big of a deal back in the 1960’s.  And then came the divorce.

I no longer really talk about the divorce, because of how it affected the first half of my life, what it took away from me, away from us.  It was always something that he regretted.  Instead, when it comes to remembering my father, it will always be the second half of our relationship, that I would truly learn about my Dad.  I would finally have that relationship that I was prevented from having as a child, albeit in a wonderful way of my own.

My dad “grabbed the ring” for the second chance that he had been given with me, to be the grandfather of my daughters.  And they both loved my Dad.  Holidays which had always been a reminder of tragedies in years past, were once again a joyful thing to experience.  My daughters of course looked forward to the tasty treats awaiting them at “Pappy’s house.”

When my Dad would retire from his job, he had decided to drive a school bus, which at one point, I swear I would never have thought he would even think of.  But for the couple of years that he did drive, he shared so many stories of the many young children that he drove to and from school.  When we would visit with him, he seemed to have such an excitement about him that had increased since our last visit, he wanted to hear from his granddaughters the laughter and the stories from them, like the ones he had heard on the bus.

But I do still miss the friend, the talks, and the support.  I definitely appreciate everything my Dad did for me.  Most importantly, he showed me the importance when dealing with a difficult situation like divorce, and the impact it has on children.  To his last breath, we did not talk about details about the divorce.  And that was his choice, which I respected.  He made decisions when I was a child, decisions that he had to live with, whether I agreed with them back then or not.  But the decisions were what he felt was best.  He kept from talking about the divorce because he knew that a parent had no right, nor any business involving a child in the process.  And of many of the things that I look up to about my father, this is just one that is something I keep in mind every day.

By the time my father had passed, I had learned about my father, from him and from others, everything that would make him one of the people I will always admire most.  He was humble.  He was definitely stubborn.  He always believed in trying.  And he definitely loved his family.  The paternal side of my family is not known for their longevity, but in spite of everything he had gone through health-wise, he did reach his goal of the age of 70.  Still, there was so much more for my Dad and I to have done, for him to have experienced with his grandchildren.

I miss you Dad.

I always share a story that I wrote and dedicated to my father, “My Dad Was Just Like Me,” which you can find under the tab marked “Pages”.

A Matter Of Fairness

A recent post on one of my Hodgkin’s FB pages asked for the opinion about pursuing legal options because of a lingering and seemingly permanent side effect from their treatments.  The reasoning was understandable, it was not emphasized strongly enough about the potential for the issue to be permanent.

As a survivor, I think all will agree, we have enough on our plates without adding any additional stress and frustrations.  I am not saying we do not have a legitimate bitch, but unfortunately courts and society are not likely to agree.  I am aware of many situations where even at the most extreme ending, death, the legal system often does not support the patient.  You need to prove negligence, in other words, that the doctor was careless, or committed an act intentionally that caused the harm.  And to do that, unless you have proof, you are relying on getting into the head of the doctor at that moment, and that will almost always be a fight that is lost.

Here is one such example, coming from a fellow survivor, who unfortunately is no longer with us.  A known chemotherapy drug to cause heart damage, and if so, almost immediately spotted, supposedly has a protocol for following up with monthly echoes to monitor for any potential damage.  This is not mandatory, and in some cases, unknown.  Go one step further, if the damage is severe enough that extreme intervention is required, such as open heart surgery, you expect everything to be followed by the textbook and the supplies used to be the best quality.  But what happens if a doctor uses a device that has been recalled due to failure concerns?

So, try to follow.  These are two situations with the same patient.  The end result, the patient died.  The oncologist had only planned to do the echo at the conclusion of the entire treatment plan, and it was scheduled.  But according to research, often damage is discovered following the first dose, plenty of time to stop using the drug if this happens.  In this case, the patient, at the end of his treatment, completed it and proclaimed in remission, crashed with congestive heart failure.  How exactly can you prove negligence in this case?  Just because the doctor may not be aware of the better protocol or options, does not mean he was negligent.  Clearly, being aware of the newer research could have made a difference.

Going to the next issue, the patient required a heart pump to assist the heart to beat.  The patient being too soon from treatment not eligible for a heart transplant (was told would need to wait 5 years post treatment), the pump was the only option.  Being smaller than the average patient, the surgeon offered a newer device that would fit his smaller frame.  The device failed, and another surgery would be needed, but by then, too much damage was done to the body, and the patient passed away.  It would be later revealed that the newer style pump had been recalled earlier than when the surgery took place.  How do you confirm if the surgeon knew this or not, to prove negligence?  Yes, common sense tells us, someone had to know.  But without being able to prove 100% negligence…

Then if you feel you have a strong enough case, then you have to hope to find an attorney willing to dig in for the long and difficult fight.  And it most likely will need to be one that if it is going to consume the attorney’s time, it needs to be worth it to the attorney.  There is just so much stacked against the patient or family trying to make things right.  But you have to really consider the stress, heartache, and all the other emotions that will take a toll on your body as you just try to get through the day, which may be hard enough.  I am not saying to not pursue the legal option, I am just saying take all things into consideration – emotions, evidence, etc. before you decide.

Would I pursue legal reparations if given the chance?  I think about it every now and then.  And as I have discussed it with family and friends, I get mixed answers from definitely to being called an ingrate because the doctor saved my life 28 years ago.  But here is my reality.  I was treated with 4 times the lifetime maximum of radiation in a 30 day period.  People who work at nuclear power plants are exposed to less.  Several of the chemo drugs I got are now known to cause extreme side effects to two of the most important body systems, cardiac and pulmonary.  Yet, when I signed my treatment release, all that was said was this, “potential for a secondary cancer or pericarditis (inflammation of the heart).  Well, if you follow my blog, you know the doctors missed it by a mile.  But was it negligence?  I do not think so.  I did catch my oncologist doing something else, running phony blood work which I called him out for, not legally, but he was more than happy to honor my request to transfer me to another oncologist of my choice.

So then, if not the doctor, who would I go after?  The pharmaceutical company that made the drugs?  They should have known more.  Unfortunately, many cancer survivors were not expected to live past 5 years, so why bother late developing side effects as a patient would not live long enough to develop them, or so they thought.  How about the FDA?  They approved the treatments.

I am no so over the limit on pre-existing conditions, a definite high risk for any insurance.  It is not my fault these things have developed in me, or is it?  I chose to be treated and cured.  I should just be thankful and appreciative.  My situation could have ended up much worse had I not been treated.  Right or wrong, there is a legitimacy to that argument.

But at the end of the day, the only way that I find solace, as difficult as it is in my life to get insurance, afford medications, see the necessary doctors, if I added the extra stressors of a fight I had no guarantee of winning, I might not make it to hear the final bell.  I have many other things to deal with and care about while I deal with these issues.  Actually just two, my daughters.  Every breath I take now, is to be here another day for them.  My health has taken enough time away from them.  But this is my choice, and I am okay with that.  Just please, if you are considering legal options, remember, you are definitely not the only one going through this.  The fight in court will not be easy.

Post Navigation