Paul's Heart

Looking Good?

These two images actually have something in common.  Do you have any guesses?  Well, the outer coverings of both, look pretty good.  I would definitely buy this red delicious apple from the grocery store because on the outside it looks perfect!  The other is a photo of me with a “friend” from a survivor clinic years ago.  He had just given me a compliment of how “good” I looked.  But what if the outside, looked nothing like the inside?  Well, then you would have how I describe my life as a long term cancer survivor.  The outer covering does not allow you to see what I am dealing with my body.

But how many times have you bought an apple that looked perfect, any fruit really, and found out that inside, it was either bruised or spoiled.  Do not worry, I will not show a picture of that as an example.  But you have likely seen that.  Again, that is how I would describe the inside of my body.  Again, will spare the photo.  Instead, I will share this snapshot taken from a symposium for cancer survivors.

First the reality check.  If you were to ask any of my fellow decades long cancer survivors, you would probably hear us all say that we were maybe told one or two things possible if we were lucky.  I remember, I was told a “chance of pericarditis” (inflammation of the heart), and a possibility of a secondary cancer.  Oh, and these were considered possible in the first five years, not “long term” as in decades later, because there was no known studies of such survivors.  There was no reason.  Why?

After we reached a magical 5-year mark, we were considered less likely to have a recurrence of our Hodgkin’s Lymphoma, and it was likely follow-ups would end, deemed unnecessary.  So, we would basically go through life, living like everyone else, with one exception.  We just would not know it.  Our bodies would not age like everyone else’s.  In recent years, studies would confirm this.  But if you were not being followed up by a doctor who knew what to look for, often times, symptoms would just not make sense, and likely, out of frustration, a survivor would feel like giving up on pursuing the problem as there would not be any obvious answer.

Out of the above listed of potential side effects that are now recognized for long term cancer survivors, under chemotherapy, I now deal with:  bone and joint, dental, digestion, fatigue, heart, infertility, kidney, lung, nerve, osteo, and risk of other cancers (had a scare a few years ago).  I deal with 70% of those issues from chemotherapy.  As for radiation:  dental, cognitive, digestion, fatigue, heart and vascular, thyroid, infertility, intestinal, lung, lymphedema, osteo, hair loss, stroke risk, risk of other cancers.  I deal with 80% of the listed issues.  Under surgery, I live with 75% of those issues.  Hormone and immunotherapies did not exist for me thirty years ago.

So there you have it.  You cannot see it.  But it is there.  At least with an apple that is bad on the inside, you can just get another apple.  With my body, I do not have that option.  Neither do my fellow survivors.  So what are we to do?  I can tell you what we cannot do.  Just “get over it.”  Or another favorite, “stop thinking bad things, you will make them happen.”

This attitude for a long term cancer survivor will do as well as it would for the ostrich with its head in the sand.

It is not known who or why, someone develops a late effect or multiple late effects.  But if you are one of the unlucky ones, and you are not being taken care of, your fate is pretty well certain.  And those around you will wonder “he looked so healthy.  What could have happened?”  And if it is a fellow survivor who hears this news, the first thing we wonder, was it because of a late effect?

Awareness is the first important part of long term survivorship.  That begins with follow-ups.  Today, doctors know that they must follow patients “forever.” Why?  Because of survivors like me and others, 30, 40, 50 years out from our treatments, long enough to have secondary issues.  Participation in a survivorship clinic gives survivors the best opportunities to deal with things before getting too extreme, such as my “widow maker” back in 2008.  I had no follow up at all for heart damage, and eighteen years from my treatments, cumulative and progressive radiation damage nearly killed me.  On one hand, this is an advantage I have over a “healthy” person who is not being surveilled.  With annual follow-ups, I should never be in a “widow maker” situation again.  Well… sort of.

Follow ups today begin with baselines of everything from cardiac, pulmonary, and muscular.  Then, depending on the frequency of the follow ups, determines the course of action on current testing compared to the baselines.  For us decades long termers, there were no baselines.  For many of us, numbers and measurements are already at concerning stature.  But that brings us to another problem.

Risk.  Because of the damage done, especially from radiation, risk of correction sometimes is worse than the risk of the actual condition.  Therefore, what happens is we end up “watch and wait” until the risk of doing nothing is worse than the risk of correction.  As in this example.  Let’s say a carotid artery is badly scarred from radiation and is blocked 75%.  Yes, that is a pretty bad number.  But the risk of correcting it, carries a pretty high stroke risk, higher than the current risk of doing nothing.

That is how I would describe several issues with my body.  So far, two things finally got to a point where they had to be corrected.  The risk of doing nothing was worse than the correction.  I am still looking at two others… waiting.

So, once a survivor is aware, is when advocacy takes on a more important role.  Because it is one thing to know, it is another to protect yourself.  All too often, we put too much trust in our medical team, and that is not a bad thing.  But as a member of our medical team, that’s right, it includes the patient, we need to speak up when something does not feel right.  If the doctor says, everything went well, and you do not feel like it, you need to say something.  Because not only does our body betray us with these late side effects, though our doctors’ hands may be quite skilled, the final concern is the one that causes many problems, some times tragically.  Many survivors get through a procedure, only to run into complications with infections or other issues, and the body cannot take any more trauma.  And again, the first sign we feel something is wrong, even if the doctor does not “get it,” we need to convince the doctor.  Over the years, I have lost count of the many survivors who went through procedures, even just common ones, or suffered some sort of trauma from an accident or fall, or anything else, actually get through the corrective actions, get well into recovery, only to all of a sudden change direction, tragically likely due to infections.

And that is our reality, if we are “lucky” to know it.  So yes, that apple may be bright and shiny, and may even be crisp.  If the apple feels soft inside, of course the apple cannot feel something is wrong inside.  It is an inanimate object.  But that does not mean it is not there.  Well, my shell may be bright and shiny, and that crisp smile I share with everyone, unlike the apple, I do feel what is inside.  Just like the apple, just because you cannot see it…