Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

Summer Vacation – A Learning Experience


As a kid, who did not love Summer vacation?  But as an adult, I love it so much more.  I have always been the type of person who enjoys watching others’ happiness, more than my own.  And now that I get to witness things as a father, through my daughters’ eyes, yes, I love every chance I get to spend with my daughters.

My daughters love the reality television show, Big Brother.  By default, that means when they visit me during the Summer, I am stuck watching the show with them.  It is unavoidable because I live in a one-room apartment.  A similar situation if you will to the living arrangements on Big Brother, more than a dozen people, trapped in a contained studio house, for over 90 days, with someone being kicked out of the house every week.  Every move is watched.  Every word is heard.  Trapped.

Ok, so our situation is not identical per se, but, the three of us are staying in the same room, for 49 days, but no one is being evicted.  Ok, we get to leave the apartment and do things.  Ok, there is no backstabbing and lying to get favors.  But there is one thing that our situations do have in common, learning about each other.

I have spent most of my cancer survivorship, proving to everyone, that I will be fine.  At the same time, I have spent all of my time, convincing everyone that the many issues I face as a result of my treatments thirty years ago, are very real.  They are not once and done episodes, but a progression of situations, monitored, waiting to have no choice but to be dealt with some day, hopefully before it is too late (read “CABG – Not Just A Green Leafy Vegetable and you will see what I mean).

My daughters were 3 and 5 when my body let me know, that while I may have beaten cancer, it came at a price.  And there would be several more episodes in the upcoming years.  But I have always been of the mindset, to let my kids be kids, let them deal with childish things.  And as I realized how much happier off they were just to know “Daddy was okay,” I used this mentality when it came to family, friends, and co-workers.  By doing so, I did myself a disservice, as well as perhaps other cancer survivors as well.  I figured, if I could keep all the issues hidden that I have to deal with, then I would not have to worry about anyone worrying about me.  The unrealistic part of that is, anytime a crisis would come up, there would be worry.  But then that would be followed up with “get over it already, you are better”, or worse, “just faking it.”

It is ten years now since my daughters saw me hooked up to all kinds of machines, recovering from open heart surgery, and having witnessed many of the other events.  Already during this visit, questions are beginning to come up.  Because of the warmer climate here, many of my scars are exposed, and these lead to questions.  Both daughters were never there when I went through my cancer, though are very proud of me for having made it all these years.  But as they grasp that the fact that many of the things that I deal with health-wise are because of my treatments, they now understand, my body will never get better, only worse.

They know that I have good days, and they have certainly seen my bad days.  They know the issues that I deal with are very real.  But that is not what are visits are about.  Yes, they are learning about me, and I am learning about them.  And I have so much more to teach them.  I take them to visit preserves, complete computer courses that may benefit them in their future, and another first, helped my oldest apply for her first job.  And we still do workbook exercises to prepare them for the new school year, though I have now pared the work down to a specific course that either may have struggled with in school (they each had one).

But there is still so much more for us to do together.  And I cherish every moment I have with them.  And I know that they are enjoying the time with me.  I know that they care about me.  They want to do what they can to keep me around a lot longer, whether it be a better diet, or exercise (we have a nightly walk routine after just 3 days).

They know that in just a few years, our roles may change with each other as I will have to give them responsibilities, as far as things they definitely need to know, and perhaps, prepare for.  They will become my legal guardians and our roles will switch.  If I am faced with the difficult situation of being incapacitated as I have with past events, they will be the ones that will need to carry out my wishes should decisions need to be made.

In the meantime, like I said, I want to let my kids, be kids.  But at least they know, just because I do not show it, does not mean that I am not dealing with some serious health issues.

And just as my children are learning, just because you see this, but do not see something obvious with the person getting out of the vehicle, does not mean that they do not have a health issue that they are dealing with.  But if you feel that you are justified in criticizing anyone anyway?  Feel right on free to trade places with us.

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Happy National Cancer Survivors Day 2018


Today marks my 28th National Cancer Survivors Day.  As you can see on the counter on the home page, I am approaching another huge milestone in a little less than two years.

Never in my wildest dreams did I ever think I would have cancer, let alone survive it, especially this long.  Back when I was diagnosed, I knew no one who had ever survived cancer except for my stepsister, everyone else had died.  But cancer would become a major part of my life, as others that I knew, would face their own battles, and look to me for support and encouragement.

Today, I am in touch with thousands of other cancer survivors.   Some newly in remission, some, decades, as many as 40, 50, and 60 years in remission.  They do exist.

One year, I am actually going to include the names of every cancer survivor in a post, but for now, I would be to afraid I would forget someone’s name.  So, just know this…

Today is your day, our day.  And if you know someone who has taken on cancer and is celebrating today, give them an extra special hug.  No matter the cancer, it was not easy getting to this point.

Congratulations everyone reading this.

Thank you for your continued readership and support.

Paul

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.

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