Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

16 Feb 2016
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The Classes Of Survivorship


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As an advocate of cancer patients and survivors, I have met so many people over the years who have beaten cancer and moved on with their lives with only having to deal with follow-up visits.  But there are also many people that I have met who have had to deal with late developing side effects from the treatments that saved their lives, only to struggle with these new physiological issues.  Sadly, whether because of ignorance of medicine to recognize these health issues, or the body simply not able to handle any more trauma, survivors who have come into my life, pass away.

It does not get any easier, as yet another survivor dies.  It does not matter the circumstances.  In dealing with my own late term survivor issues, with the announcement of a fellow survivor passing away, it is a brutal reminder just how delicate not only my life is, but as I am certain, my fellow survivors will echo the same.

For those who are fortunate enough to not only have never dealt with survivorship issues, or even a cancer diagnosis, it is impossible for you to truly grasp that we cannot “just move on” with our lives.  But as I mourn yet another survivor, and how she lived her life, I began to think about the topic of this post.  Just as there is staging in a cancer diagnosis, if it has not been done yet, then I think survivorship should be staged, or classified as well.

The first classification I would give, would be to those who finish their treatments, and other than their follow up appointments, which coincidently will continue for the rest of their lives thanks to survivors like me who proved that surveillance must be done to stay ahead of any developing late side effects, will get to go on through the rest of their lives without a care in the world.  Their magical 5 year mark will come and go.  For the majority of patients, according to statistics provided by various resources, they will not have to deal with any late side effects because they do not have any.

The next classification of survivors are those who are done with treatments, continue to be followed up, but as time goes on, develop health issues that cannot be explained.  Mysterious maladies and complaints that cannot be diagnosed simply because the experience and education of the treating physician just is not current.  The medical professionals unaware of, or worse yet, unwilling to recognize the late developing side effects from diagnostic procedures, and chemo and radiation therapies, leave patients frustrated, scared, and hopeless.  Many of these patients succumb to a treatment related side effect, and no one ever suspected or diagnosed it.  They also do not even live near or have access to the limited cancer survivorship clinics that specialize in dealing with late effects.

I would place myself in the third classification.  I am aware of my late issues of which I have many.  Although I currently do not have access to my doctors, when I am able to see them, I am subjected to annual testing and procedures to see how far my irreversible and progressive issues have gotten.  But as I  found out with my emergency heart surgery, without awareness and being a strong self-advocate, I would be dead.  But this has been a Pandora’s Box because with the knowledge of my late effect issues (cardiac, pulmonary, muscular, spinal, gastrointestinal, endocrine, urinary, immunological… there are more but you get my point), I cannot turn off the concerns for my mortality.  Because of the increased risks, most of my issues can only be managed, meaning, I have to tolerate the pains, the discomforts, and do my best to prevent the inevitable.  Oh and yes, it is managed only until the issues become bad enough that the risks of correcting are less than the risk of the progression of the issue.  To give you an example, my carotids are fried from radiation damage.  But the risk of correcting them, are too high of a stroke.  Therefore, I have to wait until they are constricted enough that a stroke is risked, only then will surgery be considered.  This is how I go through my life every day, knowing that I have all these issues, and some day, just as with my heart (and other incidents), I will have another issue that has to be dealt with, and hopefully it will be done in time.

The last classification would be of my fellow survivors whose bodies have gone through so much trauma, more than 3 times the surgeries, secondary cancers, health issues.  It is hard enough to believe all of the things that I have to deal with.  But I know of survivors who have survived longer than me, and were treated with much more harsh treatments than me.  And today, their bodies have all but given out.  There are not many options.  They are finally at the crossroads as I mentioned in the last paragraph, the risk of correction is less than the risk of the eventual fatal event.  I know so many people who are in this position right now.  And I often scratch my head wondering why so many continue to fight on.  But they do.  And they continue to experience memories that they never thought they would see.  And even more amazingly, the often offer support to others in need, never revealing just how sick they truly are.

But it happens several times a year in my life, a survivor in this stage, can take no more.  I want to be clear, they have not given up.  Their bodies just cannot take anymore.  And it happened again just recently.  And it does not get any easier to accept.  But there definitely is no way to “just get over it.”

 

Posted in Cancer, Inspired By..., Side Effects, The Heart
30 Jan 2016

Understanding Pain And Temperature


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Unless you have spent any time in the deep south, the following statement is probably going to be met with a major “eye roll” and a comment under the breath, “yeah, right,” but waking up to 43 degrees was not only cold, not only painful, but also reminded me of a condition that I have not had to deal with in over two years since I moved to Florida.

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The picture on the left shows the remnants of winter storm Jonas, with an actual amount of 31.9 inches of snow.  I missed this storm living in Florida.  But in the picture on the right, the second most snowfall occurred back in 1983, which I was a senior in high school.  The remaining three storms like this, were following my battle with Hodgkin’s Lymphoma, and the last two following heart surgery.

Why do I bring this up?

Treatments from over 25 years ago have left me dealing with some late issues with my body that developed over time.  During cold temperatures, I am reminded of one of those issues.

I cannot recall exactly how my lungs felt prior to my heart surgery in 2008, but I do know that following my surgery, my temperature tolerance dropped about 10 degrees.  Up in the north, I learned to deal with this issue by wearing wool over my mouth and nose, and wearing extra clothes to stay warm.  When did I have to start doing this?  Once the temperature went below 60 degrees.  My cooler weather apparel was often met with mockery, and only those who deal with similar issues can know what I was physically feeling.

The first thing that hits me is breathing in the cold air.  The only way to describe the feeling is that my lungs instantly freeze up solid like a brick.  Your lungs need to expand, and my lungs will not.  My current lung capacity has been measured at 76% from progress damage due to radiation therapy.  In fact, the lower lobe of my left lung is completely “dead”.  The only way for me to get relief, since inhalers do not work, is to get into a warm environment as soon as possible.  The “thawing” out of my lungs if you will, can take up to about a half an hour, possibly more.

But in the meantime, two other issues appear once the cold hits my lungs.  I often begin to have an anxiety attack, at the panic of my restrictive lung disease.  And with that, my breathing becomes even more difficult, the anxiety gets worse, and then the pain hits.  Again, the best way to describe the feeling, is my muscles, especially in my back and hips “constrict” like a boa constrictor is squeezing me.  Again, there is no relief other than thawing out.

My late developing issues from treatments for Hodgkin’s Lymphoma are progressive.  There is only one thing I can do, and that is “manage”.  There is no cure, no reversing what has happened to my body.  My moving to Florida I thought would have helped with this particular issue.  But recently, our weather has turned colder down here.  No, I know I will never volunteer for sub-freezing temps again, or major snowfalls, so I will state that my friends and family in the north will deal with much worse when it comes to cold temperatures.  But for me, 43 is cold enough to remind me what my body has gone through, and still has to deal with.

Posted in Cancer, Education, Inspired By..., Side Effects, The Heart | Leave a comment
23 Jan 2016

Beautiful But Deadly


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Yes, quite a lovely photo.  This picture was taken back in 2010, but I can easily envision the same sight in 2016 from my current home in Florida.  The snow is quite beautiful.  There is a peaceful aroma that comes with a large snowfall, as well as the chilling silence.  Once the snow has finished falling, you will begin to hear the echoes of snowblowers, and neighbor helping neighbor to shovel out from the unsuspecting amount of snow.

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The amounts of the current snowfall, while pictured here, have been stated up to 30″ localized, meaning some pocketed areas could see larger amounts.

As a child, these were amounts that we could only dream of.  Undoubtedly, school would be missed because it would take literally days to dig out, and often times, areas were without electricity.  But that was of no concern to us.  We were more than happy to grab a shovel, and start taking care of sidewalks and driveways because that would mean one thing, SNOW FORTS!

Shoveling snow as a child however is much different than it is for an adult.  And even if we are in our most fit condition, shoveling snow can be dangerous, if not lethal.

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Of course, we hear the warnings all the time.  And we also hear of the tragedies.

In 2008, I underwent emergency heart surgery to perform a double bypass.  But unlike millions of adults, my cardiac issue was not related to weight or diet, but rather long term effects from cancer therapies.  So, it should not come as a surprise that being fairly physically fit and active, when we got hit with snowfalls, especially in the Winter of 2007/2008, I did not plan on taking any precautions when it came to shoveling.  I just simply went out and did it.

Prior to my heart surgery, for a period of 4 months, it turned out, I was having symptoms of a major blockage, often referred to as a “widow maker”.  It is called that for only one reason.  You have a fatal heart attack.  By the time the damage is done, it is usually too late for paramedics to do anything.  My symptom, was fairly simple, but ignored.  After all, as I said, I was in decent shape, and in spite of my father having a major heart attack, I was fairly certain I was not having a heart attack.

From the moment I lifted the first heap of snow, a “tightness” from the middle of my chest to my left shoulder occurred.  And the sensation would last approximately a minute and then go away, and I would continue shoveling.  Now it should mention, the amounts of depth would vary, but my driveway was 30′ x 10′ and I had about 100′ of sidewalk to do every time.

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Now while the picture above is the actual scan from prior to my heart surgery, this was done following less than one minute on a treadmill when I complained about the same symptom as shoveling, and confirming from the EKG that was attached to my chest, that something had just occurred.  Now imagine, this photo was basically showing every time I was shoveling snow (or anything else physical that resulted in that symptom) and what was about to happen.

My cardiologist refers to me as the luckiest man on earth, because I prevented my fatal heart attack by seeking help before it happened.  Yes, I played with fire for 4 months.  The problem for me is I am not a complainer, so I just tolerated the discomfort, and it could have been fatal.

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While I did heal, the winter of 2008/2009 was on us in no time, and without a snow blower, I was faced once again with shoveling snow.  Of course I was going to be careful, but this was clearly an activity I should not have been doing.  And it ended up being a very busy winter with snowfalls.  By the 3rd snowfall of the season, I had finally purchased a snow blower, which got used a lot from then on.

But my warning is no joke.  Most reading this are not young, and perhaps should not be shoveling snow.  And this weekend, so many that I know are going to be busy shoveling out from a major snowstorm.  Please, if you must shovel, and it is still snowing as of this posting, so you hopefully have read this post, please read the warnings from the American Heart Association I have pictured above.  And please, please, be safe.  I have a lot more posts that I would like you to read.

Posted in Cancer, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment

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