Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “February, 2016”

Living With The Inevitable


I will not beat around the bush.  It sucks knowing that your body is going to betray you, it is just a matter of when.  And I am not talking about the natural order of life.  For many cancer survivors, such as myself, the trauma of our treatments has left us dealing with so many complications.  It becomes a matter of awareness, knowledge, and willingness to fight on.

This post was prompted by a reader of “Paul’s Heart” who simply responded with an “ugh” at the fact, that those of us survivors how are aware of our late effect issues, know that it is not just a matter of if the next event will happen, but when.  For me, it does not mean that I have stopped living at all.  Quite the contrary.  I can appreciate my doctors who tell me that they have every intention of making sure that I not only see my children graduate high school, but if they choose to get married, be able to witness that, and if my children bless me, to experience grandparenthood.

But let me tell you, it has taken a long time to get to the point where I still have that hope of reaching that stage in my life.  And each time a fellow survivor passes away from their late side effect issues, those of us still on this earth, are reminded just how fragile our bodies have become.  It is a safe bet that only those of us in health situations like this understand this.  Chances are, our spouses will not understand what it is like.  Our friends will not understand what it is like.  Here is my reality, and many other’s as well.

April 2008, emergency heart surgery caused by damage from radiation treatment which prevented an imminent fatal heart attack.  In the words of my cardiologist, “it was not a question if” I “would die, but when.”

March 2012, after going to bed feeling fine, I woke up four hours later, in immense pain, projectile vomiting, carried out of my house on a stretcher in front of my children, to be told I was septic from pneumonia.  This was due to a combination of radiation and chemo damage.

December 2012, a second bout with pneumonia, again after feeling completely fine, this time involving both lungs.  It was directly related to radiation and chemo damage, as well as my susceptibility from having lost my spleen to Hodgkin’s Lymphoma.

I have had more than a dozen more incidents since then, all related to my cancer survivorship.  And if there is one thing I have learned, and no one will tell me differently, these situations come up without warning, but are also complicated by my tolerance for pain, and willingness to put up with discomfort.

I do what I can, when a situation does come up, to make sure that those who are treating me, understand that no one understands my body, or the risks involved with treating me for any of my health issues, better than me.  If I am unconscious, I have to have faith that those treating me, will see my med-alert bracelet, which sends them to my wallet where I have two laminated cards explaining my health history, and preventative measures that must be taken, to make sure that recovery success has its best chance.

And as serious as all this is, I do not live my life in fear of it.  Because I know that it can all be gone tomorrow.  I have said goodbye to too many other long term survivors who have passed.  So I do live each day to the best I can make it.

My Qualifications

I am going to need to offer a bit of a warning to this post.  What you are going to read will be quite shocking, maybe even quite overwhelming.  In upcoming posts, I will be finally getting to the most important post I have ever written.  But before I can do that, I want to disclose to you, just how qualified I am to discuss these things, what drives me.


This is what I allow everyone to see.  I have my reasons.  The first, I do not want pity.  I want to lead a normal and healthy life, just like so many others who have been blessed with perfect health.  I do not want to be helped to do simple things.  The second reason, unless you are a fellow cancer survivor yourself, the things that I am dealing with, the health risks that I face, the uncertainties, can be overwhelming.  Many of those close to me have not been able to accept the late effects that I deal with, and some have simply given up on me because they do not want to hear about the next medical events as they come up.

But as the expression goes, about the book and the cover, I am choosing now to open the book.  As I said, what you are about to read, it is going to be difficult.  While many consider surviving cancer to be a good thing, and I do consider surviving cancer, especially as long as I have, a good thing.  But my survival has come at a price.  And as you will see, and I am sure you would hope, diagnostics, treatments, and risks, still have such a long way to go.  I am planning on publishing the next post on what I hope will serve each and every reader of “Paul’s Heart” to be the advocate that each patient needs to be for themselves, so that survival has a chance to be more tolerable.

And with that, here are my qualifications to speak as an advocate for better diagnostics, treatments, and follow up care for all cancer patients and survivors.

The Heart

It was April of 2008, when I first discovered that for 17 years, my body was developing side effects from diagnostics and treatments given to me for Hodgkin’s Lymphoma.  I needed to have emergency heart bypass surgery due to radiation damage to the main artery going to my heart.  Following that surgery, it was also discovered that I have valve issues with two of my valves from both radiation and chemotherapy.  However, because of risks from the surgery, any corrections of these valves must wait, until the risks of the condition itself, become worse than the surgery to correct them.  Simply put, a ticking time bomb.  And if that were not enough, many of the survivors that I have known over the years, who have had this surgery, have survived that surgery, only to suddenly succumb to unsuspecting infections.  I am hoping that by my knowing this risk, should the situation arise, I can convince those with my care of the precautions that need to be taken.

The Lungs

Damage from radiation and chemotherapies has resulted in the loss of the lower lobe in my left lung, leaving my lung capacity at a measured 76%.  I also have spots on my left lung that are followed up every other year, to watch for growth in the event that they become cancerous.  These spots are unknown, but known that they are growing.

A combination of cardiac and pulmonary, I deal with shortness of breath, labored breathing, with any severe weather like humidity and cold.  Any walk with even the slightest of incline or steps can leave me struggling for breath.


Both of my carotid arteries are narrowed from radiation damage.  Another issue that is monitored until it becomes bad enough to do anything about, the risk of stroke form the surgery itself will only be considered once the risk of stroke from the narrowing of the carotids is greater.


Chemotherapy has resulted in me developing osteopenia, meaning that my bones are at a higher risk of fracture.  Along with facet joint arthritis, both conditions exist in my lower spine resulting in pain I deal with on a daily basis.  There is also quite a bit of discomfort in my hips.

Muscle Damage

I have been diagnosed with Radiation Fibrosis Syndrome.  I have lost so much muscle mass in my upper torso, it is visible to even non-medical personnel.  Flexibility and mobility have both been lost.  I am at a higher risk of muscle tears.  I am not able to lift my arms above my shoulders.

And because of the muscle loss in the back of my neck, my head pulls forward from the remaining muscles in the front of my neck.  This is referred to quite common-like, “drooping head” syndrome, because the appearance is obvious, the head droops forward.  I have spent years training my neck to keep my head lifted up.  Yes, everything courtesy of radiation damage.

Thyroid Issues

Yet another result from radiation damage, my thyroid has been reduced to a shriveled misshapen organ, basically shut down.  I take a prescription to keep it functioning properly, but that does not prevent the many cysts that develop each year.  So far, the cysts have been benign, but due to the risk of developing thyroid cancer, one of the cysts actually required a biopsy.

Loss of My Spleen

As part of my diagnostics, my spleen was removed.  Making perfect sense as Hodgkin’s being a cancer of the immune system, often times, the spleen is involved, as was my case.  However, at one time, it was believed that we could live without the spleen, turns out medicine was wrong.  And because of that, not only is my ability to survive a cardiac event compromised, I can also not defend myself against common illnesses such as the flu, pneumonia, strep throat, chicken pox, and more.  I cannot even be around anyone receiving “live” vaccines for this reason.


Radiation damage has resulted in several issues with my esophagus.  The most physically obvious, is difficulty swallowing.  This gets somewhat relieved following my annual endoscopy, only to return.  The I have something called a Venker’s diverticulum.  It is a flap in my weakened esophagus that traps particles of food, which decay, and get inhaled into my lungs.  This has resulted in two cases of aspiration pneumonia, with one case reaching septic levels.  And then there is the diagnosis of “Barrett’s Esophagus”, which leads to an increased risk of developing esophageal cancer.  Combined with severe reflux, and these risks are quite high.


There are minor, “lol”, if you want to call them minor, at least in comparison to all the big things I deal with, chemotherapy left me sterile.  There is some hair that never grew back from radiation damage.  And I have a frequent issue with unexplained bleeding.


I battle “Survivor’s Guilt”.  That’s right, guilt for surviving cancer, for surviving my late effect issues.  Wondering and waiting for the next shoe to drop.  Fortunately, because I am an advocate for my own care, I am not afraid to challenge a doctor to order a certain test, explain to me in detail every aspect of my care.

My issues cannot be reversed, only managed.  And that is how I survive.  So now you know what I deal with each and every day.  Now you know why it is difficult as I say farewell to another long term survivor.  This is why I struggle with news of patients not being properly followed up and also passing away.

So now, I am closing the book again.  And as long as I can help it, you will still only see the cover.  But that does not change what is written in the pages inside.  I must take care every day to prevent exposure.  I must make sure that I do not physically stress  my body to cause any kind of injury with my increased risk.  But that is a burden I place on myself, no one else.

But like the post I wrote about the classes of survivors, this is why I consider myself in the third class.

Up next, the project that I have been working on for several months.  The post is coming up next.

A Survivor’s Response… In Her Own Words

In my last post, I wrote about “classes” of cancer survivorship.  A fellow survivor wrote a response on one of our Facebook pages, and I asked her if it would be alright if I posted her response on my blog.

Like me, Judy D’Antonio is a long term cancer survivor.  But whereas I consider myself in the 3rd classification of survivorship, Judy considers herself in the 4th and most extreme classification.  And Judy is not alone.  In fact, I know many others, including like the friend who just passed away recently inspiring my last post.

So without any further commentary, here is Judy D’Antonio’s response to my previous post, in her own words.

“This is a great description of the various stages of survivorship. I was a bit distressed to realize I was in the last group of survivorship, having endured so many of the late effects (3 subsequent cancers, being dependent on oxygen and an AVAPS machine at night due to lungs that no longer are able to rid my body of deadly carbon dioxide plus numerous other late effects )

I still keep fighting though. As hard as it is I still keep fighting. I sometimes wonder what the future holds and how many good years I have left. I’ve been told by various pulmonary doctors that I’ll eventually need to use my AVAPS machine 24/7 due to my lungs inability to work properly. Do I really want to be connected 247 to a full face mask and a machine that breathes for me? I’m near the highest level on my machine and they have suggested I seriously consider having a tracheostomy if my lungs get much worse. But when does it get to be too much?

Already I feel resentful that so many things have been taken away from me. Things that most people take for granted such as being able to swallow their food without choking. Resentful that my body no longer is able to maintain a healthy weight and I must hook myself up every night to a feeding bag through my G tube to provide nutrition. (going to the bathroom at night is a challenge with all these machines to unhook!)

When do you cry uncle and just say that there has to be some quality of life? I worry about this because one of my biggest fears is being incapable of taking care of myself and being dependent on others for my basic needs ( my greatest nightmare happened when I stopped breathing when I was hospitalized and had to be put on a ventilator for several days)

So for now I’m continuing to fight because I still have the energy to, but when it gets to be to much I know I’ll be ok with letting go.”

Judy D’Antonio

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