Paul's Heart

A Promise I Cannot Make

There are many events in a parent’s life, there is not training for, only “on the job” experience.  I recall telling the story recently to my daughters that prior to their adoption, I was confident that I was “ready” to be a Dad.  I mean really confident.  Changing diapers.  No problem.  First date.  Um… okay, thought about it, eventually was okay.  There would even come a time eventually, when my daughters would learn about my experience with cancer, many years before their birth, and the many medical crisis they would actually witness in their youth.  But it was one particular moment in the Emergency Room, that I found out, just how difficult it was going to be, to be a parent.

There was a small child in the room next to me.  I could tell it was a small child, because of her screams of terror.  She was obviously the patient.  I could not tell why she was there because her words never mentioned what was traumatizing her body to be in the emergency room.  She definitely did not want to be there.  The little girl wanted only one thing, and was depending on the one person she should have been able to count on to protect her.

“DADDY!!!  THEY’RE HURTING ME!!!!  MAKE THEM STOP!!!!  DADDY!!!

This went on for several minutes.  Probably a lifetime for not only the little girl, but as a future Dad myself, it hit me as all of a sudden, I now realized one of the aspects of being a father I was not prepared for, but a lifetime for the father of that little girl.  No parent EVER wants to hear their child scream in such anguish, pleading for comfort, all the while as a parent, all we can do is our best to assure our child, “it will be over soon.”

Luckily, the times that there have been medical emergencies for either of my daughters, the doctors were blessed with calmly demeanored or all-too-willing patients.  So having my role as support was locked up pretty good, providing a sense of security for them when it was needed.

If not dealing with their physical pain would be bad enough, emotional pain was something that would be felt some day, probably in the form of loss either in a relationship, divorce, or even death of a loved one.  Every parent always grapples with how to handle death with a child, because most likely, depending on the age of the child, that child will never really understand what has happened, or be able to comprehend the loss.

I can only think of two situations that my children were at funerals, one as toddlers for a distant relative, definitely having no clue what was going on, the other, a much closer relative, their uncle, who had passed away from ALS (Lou Gehrig’s Disease) just a couple years after this photo was taken.  Again, my daughters were fairly young at the time, and in the moment, they knew death was not a good thing, at the same time, not realizing it was also permanent.  They would never see their uncle again.

I make sure that my daughters know stories about my late brother-in-law.  He was a good man, a good friend, a good Dad.

My daughters are much older now, still youth, but now have a different reaction when it comes to death.

Yesterday, my daughters were notified by their mother, that someone close to us had passed away suddenly.  He was a family friend.  And also had a major connection to our family.  We both adopted our daughters (my youngest) together.  This was a bond with someone, that they have known their entire lives so far.  Of course, their thoughts are with his wife, and as importantly, their daughter, who just like their cousin of the uncle that passed away, no longer has her father.

Here is where it gets more complicated for my daughters.  If children are lucky, they never have to go through their days wondering about their parent’s mortality.  Hopefully Mom or Dad takes care of themselves, and other than an unexpected event, there is nothing to worry about.  My daughters do not have that chance.  They have witnessed three times, when my body challenged me too hard (not including my cancer), once being taken out of my house on an ambulance stretcher.  They know my health will always be challenged because of the treatments for Hodgkin’s Lymphoma thirty years ago.  And as hard as I try not to let my fear show, as hard as I try to get past my limitations, I cannot keep them from knowing that my body is not well.

This is why it is hard for them to understand what happened to our friend.  The cause of his passing is unknown at this time.  But the comments from my daughters was how well he was doing, and looked, a bit of a contrast from a time when he may not have been in the best of condition.  But they know something happened to him, to cause his passing.  Oh, and he was around the same age as me.  You can see where this conversation was going with my daughters, what their concerns are.

I know my daughters worry about me.  They know about the many health issues I have related to late effects from my treatments, and they know how serious they are.  They know how close they have been to losing me, several times.  I am lucky to have had the doctors and nurses that have cared for me, to get me through each event.  And I can assure my daughters that I am doing all I can to take as good care of myself, to increase my chances of a longer life.  Especially eating healthier when they visit me, something I need to learn to do on my own when they are not with me.  And I know my doctors are doing all they can to stay on top of things as they develop.

But my daughters know I cannot make that promise to them, that it will not happen to me.  And that is what scares them.

My daughters do not remember this time, when they learned “Daddy’s body” was no longer perfect.  I still have the heart pillow (pressed between my daughter’s head and my week old open heart surgery incision).  I still have my daughters.  And they still have me, something I know they do not take for granted.

Dentists And This Particular Cancer Survivor

After everything that I have been through from the cancer to the many surgeries I have faced, there still lies one caregiver that stresses me out more than anyone, the dentist.  I cannot say when this irrational fear ever began.  To my memory, I had a good pediatric dentist who never hurt me, even when it came to fillings, making sure my head was spinning with plenty of nitrous oxide (laughing gas).

As an young adult, the only thing negative I can recall was the frequent desire of my dentist at the time to want to do “crown work” because of the wonderful dental benefits I carried at work because “you have the benefits, you should use them.”  It did not matter that I still had to shell out half of the payment that the insurance did not cover.

But I am going to skip ahead for a second.  Because it was my last dentist that actually helped me to get over this anxiety that I had, not just because it was normal and irrational, but this dentist knew that with the complicated health history following my treatment for Hodgkin’s Lymphoma, dental work was as much an important part of my life as much as the follow up appointments with my doctors.

But it was a simple but determined act on her part, which turned things around for me, especially with my anxiety.  As I found myself cancelling multiple appointments in a row.  Not even my any of my doctors went to the extent that my dentist had gone, actually calling me, repeatedly, encouraging me to get in for an appointment.  Coincidentally,  she had convinced me to come in, just before I unknowingly would undergo my emergency bypass, caused by my radiation therapy treatments.

My dentist understood, that with me being asplenic (not having a spleen), hygiene and gum maintenance were important to maintain.  An odd fact that I learned was that many heart disease cases are discovered during or following dental appointments when bacteria from the gums ends up traveling through the bloodstream leading to cardiac episodes.  But at the moment, that was not even the main concern to her, it was dealing with my anxiety.  Three separate phone calls later, she had convinced me to come in, and together we talked about the anxiety issue.

A lot of that conversation would not have been forgotten following my heart surgery.  You see, it was at that time, it was discovered that my body had been progressively developing late issues from my cancer treatments.  Along with my heart, lungs, spine, muscles, esophagus, thyroid, and more, my teeth would also need to be taken care of more properly and thoroughly.  And my dentist understood this.  She understood the need for prophylactic care, like antibiotics that I would need to take before having any kind of work done to prevent infections.  And of course there was the structure of the teeth.  She was aware of these concerns because she continually learns of latest advances in care and patient needs.

Less than a week after my heart surgery, I broke a tooth.  And for the first time, a filling or crown would not take care of it.  My dentist immediately referred me to an oral surgeon, and the tooth was pulled.  It seemed no big deal to me as it was one of my back molars.  In less than a year, a second tooth would develop a problem, an abscess.  As a cardiac patient, this was the worst thing that could happen to me.  Under normal circumstances, a root canal is done, followed by placement of a crown.  Unfortunately, this was going to carry quite a price tag on it, and I was left with the decision to have my second tooth pulled.  It was no big deal… or so I thought it would be.  As the oral surgeon attempted to pull the tooth, it literally crumbled in his tool.  I could feel it, and hear it.

When I returned to my dentist, we had a detailed conversation that now included prevention, or at least an attempt to prevent any more lost teeth.  It seems the radiation therapy that I had received, the excessive amount of it, had spread from the area intended (no duh, like my heart as well), so not only did my jaw get exposed, so did my teeth.

Meanwhile, on social media pages for cancer survivors, this seemed to be an all-too-common issue for many.  One thing became obvious, prevention did not seem like a likely possibility.  Instead, the concentration needs to be on the corrective action, especially if the tooth must be pulled.

Unfortunately for me, I have no options available as far as root canals and crowns.  If a tooth cannot be fixed, it will be lost.  And it is how it is done that makes a difference.

For the average healthy patient, or the unknowing cancer survivor, dentists and oral surgeons are likely to recommend or require “hyperbaric oxygen treatments” to help heal the jaw bone.

To be honest, I know nothing about this part of a tooth extraction, other than I cannot go through this.  Forget the cost involved, because of another cancer treatment related issue, exposing myself to this option could cause even greater complications.  You see, one particular chemo drug I got, called Bleomyacin, even years and decades following, evidently plays a negative role in hyperbaric treatments in what has been described to me as sort of a “reactivation of the drug”, causing damage to the alveoli of the lungs, you know the little sacs, causing an issue with fluid, called pulmonary edema.  As a patient with as many health issues that I have from my treatments, I really do not need to add any more complications.

And as I faced yet another extraction, luckily all have been in the rear of my mouth, it was only after multiple attempts to find an oral surgeon who would either not force me to undergo the treatment, or have a different option.

Platelet-Rich Plasma therapy (PRP) is a process where blood is drawn from you, the plasma processed to be used, by injecting into the hole left from the vacant tooth, to help the bone heal.  It is an inexpensive process, and not only not time consumptive, but done in minutes following the extraction.  The tooth pulled, the PRP administered, and the healing begins.

The only other issue to consider, is whether to replace the space.  Again, having radiation damage, I do not have the option of either an implant, and well… a bridge would just be too expensive.  The implant is not an option, because of the risk of osteonecrosis.  This simply put, is an increased risk of the jaw bone breaking, as in placing an implant would likely cause this.  To be honest, I can put up with some lost teeth in the back of my mouth, but not really willing to risk any damage to my jaw.

I had originally planned a different post tonight, but on my social media pages, there was a lot of buzz about this issue, so I have put out what my experiences have been.  It is what it is as far as I am concerned.  It is all about managing what I have to deal with, and cosmetically, it means doing all I can to keep what teeth I have left (although I have been told there are likely three more that eventually will face the fate of the others that have come out).  But because I have learned to manage the anxiety I had about going to the dentist, I am able to face this particular late effect issue, unfortunately on as seemingly a regular basis as my check-ups.

And just like my other health issues I deal from the late effects of my cancer treatments, unless I tell you, or, at least as long as my smile does not show any differently, you will never know that I am dealing with this.