Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

Becoming Your Parents

I used to kid my grandmother, so firm in her ways, how she fought, kicked, and screamed at the mere thought of having a dishwasher (other than her grandson), a microwave, or a VCR.  By the end, she did have all three, appreciating all the conveniences.

I have done my best not “become my parents” as my daughters have gotten older, a typical “guarded” father.  But my older daughter has a very peculiar sense of humor.

I have been lucky that there have not been many instances of major “crushes” or interests for me to deal with by either.  Just opportunities to offer fatherly advice and reminders about what they should expect from anyone who wants to spend time with either of them beyond a basic friendship.

I speak to my daughters nearly every night, exceptions would be when there is homework, perhaps they are out with their mother.  Or, she was “over at my ‘friend’s house.”  Of course my radar goes off as there is no name of such friend mentioned, and I pressed further as if looking to have myself feel uncomfortable on purpose.  “Who was it?” as I rattled off a list of the friends I knew of, all who happened to be girls.  She gave me a name I did not recognize.  It was a boy.  My instincts were right.  She was hiding something from me.  So I thought.  She was toying with me.  “Come closer father” she was probably thinking as a predator in the wild kingdom stalking its prey.  And she enjoys that game.  And I oblige.

“So, what were you doing?” I asked.

“Just hanging.”  I have to pull the details out.  She knows what she is doing.  The trap is set.  “Did you have dinner there, with his family?”  “Yep.”  “So then what?  What did you do?”  Slowly she the predator gets closer to the prey.  “What movie did you watch?  What did his parents think of it?”  The silliest question, and clearly let my daughter know that she had caught her prey.  Now it was time to go in for the kill.

“We were watching it on Youtube in his room,” saying it so innocently.  Of course, it was innocent.  All I had to do is just stop right there.  And just like I had some sort of case of parental turrets, it came out…”but you had the door open right?” I seemed to have been begging and hoping, remembering my time as a teenager, and rules expected to be followed by parents.  “Nope.”  That was it, just a one word reply.  She made it clear that there was nothing to be discussed.  But, I am her father.  She then burst out laughing at watching me squirm with discomfort.

To be clear, I trust both of my daughters, and there are situations that will come up that are bound to push my boundaries of comfort.  I am becoming my parents.

Geico Insurance even capitalized on these moments with a commercial series of various situations where adults morph into their parents, something we swear never to allow to happen.

But there are signs, and not just my recent conversation with my daughter, that change is happening, being so set in my ways, not wanting to accept change.

There is one are however, I really feel firm about, and I believe it makes a difference.  I want to be clear, when it comes to the world of medicine, and as involved as I am, personally and with knowledge, I respect every medical care personnel working.  To them, their job is not just a shift, of following procedures, these people, heroes, all have emotions connected to their jobs, constantly under duress, rarely knowing of successes, but never able to forget those that have not survived.  So I want it understood, I am not undervaluing any nurse, tech, doctor when I say what I am about to say.

I am not okay with the new system of medical care, recently finding another change I was not aware of happening.  Others I have been able to see the change, and if unable to object to it, and least strategize around it, so I could accomplish what I needed to, to feel I got the care I was looking for.

I have stated many times, my current primary care doctor I have had over thirty years.  No matter where I have lived, she is the only one that I will see, which is miraculous given that most reading this are less likely to have seen the same primary care doctor from a practice, twice in a row, and especially how fragile my health is.  Yet, if she is not available, I put the “pause” button on what I am dealing with and ask, “when will she be available?”  And then I wait.  I don’t care how long.

If it is something I feel I can handle with the nurse, I do it.  Not sure the difference between a nurse and a nurse practitioner is, and I have no interest in knowing.  I am guessing a nurse practitioner is like saying a “nurse plus.”  Either way, I know that I am dealing with a nurse.

My doctors, I know who they all are.  I know the care I am getting, and I know the information they give me is based on their education and experience.

These are the two medical professionals that I am used to dealing with.  If not something a nurse can handle, my doctor takes care of it.

Now, here comes “my parent” mode.  Enter the “physician’s assistant.”

Over the years, I have heard this term used around me multiple times.  My doctor either still performing other surgeries, or for any other unavailable, would result in another individual coming in on his behalf.  Ok.  I am cool with that.  The doctor was not available so he sent his peer, another doctor, to discuss my concerns.  They appear just as experienced, so I am unsuspecting as to who I am actually talking to.  Once that particular event is done, I move on, noticing nothing.

I recently had a conversation with a physician’s assistant, whom I have had many conversations in the past.  When it comes to my care, I know my doctor cannot be monopolized by me, and has many other patients.  And I know that he has others around him, who he has trained to deal with our unique situations.  And they are very good and have bright futures ahead of them in survivorship care.  So then, what bee flew up my shorts with what happened next?  Obviously I have become my parents in another aspect.

I referred to him as doctor, as I often do, because I thought… well, I thought he was one.  “Please, not Dr.”  I began to feel like a television episode or movie scene where someone trying to escape in a hospital slaps on a lab coat to look like a doctor.  Have I been played?  He was so convincing, so knowing.  And while I knew he would not be the one doing any kind of procedures on me, I was okay with him relaying  information from my “other” doctor, and being able to answer my questions.

So, what exactly a physicians assistant?  It is not a nurse, or nurse practitioner, or else they would be referred that way.  I though a nurse was an assistant to the doctor.  A PA is not a nurse, but also is not a doctor, though works under the supervision of a doctor.  Both have the education, and likely the experience.  Ultimately though, the doctor is the one in charge of the patient.  However, that does not change the fact, this assistant is not a “doctor”.

Here comes the parent.  “Back in my day…” we had doctors and nurses.  And if doctors were too busy, or nurses could handle the situation, that is what happened.  I have to admit, I really feel weird about this situation.  I have dealt with this PA many times, and up until he had me stop referring to him as doctor, I would never have been the wiser.

But when it comes to my care, I need the best possible.  And at least up until now, he had me convinced he was, as long as I thought he was a doctor, because I was convinced he was.  There is a reason I have had only one PCP for three decades.  I trust her, and only her with my care.  Specialist I need to see, I need the best.

Again, I want to be clear, I do not want to be perceived as cutting anyone down.  I have been used to one form of health care my entire life, and things have changed for whatever reason, but my needs have not.  Probably my fault for not understanding who I was seeing, and I likely would have cancelled any appointments, waiting to see the actual doctor.  Worse, refusing to see anyone other than.

This “becoming your parent” thing is not only real, but a serious issue.  That said, I do respect the PA I see, but at least I now know, his “teacher may teach him everything he knows,” but may not have taught him everything his teacher knows.  And now I am aware of that.

A Diagnosis Literally “Hard To Swallow”

I have more than a dozen different issues that I deal with, some more than others, related to cancer treatments more than thirty years ago, for Hodgkin’s Lymphoma.  Some of these issues, I only discover upon testing prescribed by my doctors.  Others are a bit more obvious.  One of these issues has an impact on quality of my life requiring me to manage anything that can aggravate the issue, to a minimum.

A little over twelve years ago, and this was a retrospective look back in time, I began to develop difficulty swallowing, dealing with a “choking” sensation.  As time went by, it did not matter what food, and eventually liquids, including water, could paralyze me where I stood or sat, waiting for my throat to open up, and let the substance pass.

I was not able to breath.  I was not able to call out for help.  Most around me had no idea what was happening to me because I had a habit of stepping aside from anyone, so I would not be subject to questions about what was happening, or was I alright.

I am notorious for waiting to seek medical help.  This situation was no different.  I had finally gotten to a point, with the water, I guess you could say “my water broke” me down.  I reached out to my doctors handling my long term issues, clearly believing this was going to be something related to my treatment past.

My first stop, was a specialist referred to as a Ear, Nose, and Throat specialist (ENT).  He performed a laryngoscopy, which simply was sending a tube with a camera up through my nose (of course I cracked the Vinny Barbarino line “up my nose with a rubber hose which the doctor was too young to catch the culture reference from “Welcome Back Kotter”).

It was a brief test, but did not produce any answers that the doctor could see.  Structurally, nothing was noticed as irregular.  I was referred to a speech pathologist which was odd, as I did not have any issue with talking.  As I met with the speech pathologist, she explained to me, that there was a possibility that cumulative and progressive radiation damage could have damaged the muscles in my throat, making it difficult for me to swallow.  Her approach was to have me to simple exercises including stretching my jaw and swallowing.  She would decide on the next step if necessary in a few weeks.

The time came, and I still had the swallowing problem, seemingly getting worse.  She prescribed a barium swallow study.  This involved swallowing substances, the only way to describe them, that resembled in texture, various items from cake to vegetables to meat to even water.

It was a painless, but odd test.  Everything was white and liquid in color.  The taste was not awful as many other contrasts I have had to take.  But what was odd, was the fact, that when it came to swallowing the liquid labelled “bread”, it felt like bread being swallowed.  Pudding, cake, jello, meat, everything felt like it was supposed to, regardless of how it looked.  As I swallowed, the tech would observe on a screen, where to solution was getting hung up, and why.

Clearly the muscles of my esophagus were not working properly, as most of the substances got “hung up.”  My choking sensation that I felt I was dealing with, was not in my head, but in my throat.  Beyond the scope of a speech pathologist, I was then sent to a gastroenterologist.  A procedure, called an endoscopy was ordered.  This would be the end-all/tell-all of what was going on.  Another tube, another camera, this time down my throat into my stomach.

The first thing noticed on the way down, was a pouch called a Zenker’s Diverticulum, named after German pathologist Friedrich Albert Von Zenker who discovered it in 1877.  If the diverticulum thing sounds familiar, yes, it is the same term used as diverticulitis normally dealt with, in regard to the intestines.  In my case, this thing is in my throat.  This condition definitely caused by a weakening of my esophagus due to radiation damage.  More on this later.

Once passed this, there were multiple polyps found, and removed for biopsy.  What people need to understand, polyps are a precursor to cancer.  In theory, removed the polyps, prevent the cancer.

Along with radiation damage, there was a lot of damage caused from acid reflux, which clearly I suffered from, just did not acknowledge it.  This reflux also irritated my esophageal tract and also caused an issue with the diverticulum.  I will get to that.

I was also diagnosed with a hiatal hernia (basically, my stomach was squeezing into my chest cavity passed my diaphragm).  Another major concern, I was diagnosed with Barret’s Esophagus, a pre-cancer of the esophagus.  Great, another thing that has to be watched for to turn into something worse.  And the final diagnosis of this system, as if there were not enough, esophagitis, an inflammation of the esophagus.  All of these things were combining to cause my swallowing/choking issues.

Besides damage caused by my radiation therapy, and the reflux, my diet (spicy or acidic foods especially), and stress (I was under tons of stress at that time) were big factors as well.

Relief, temporary came via the scope while they were down there, the doctor stretched my esophagus.  But then I was recommended to change my diet to less spicy and acidic foods, elevate the head of my bed, so that gravity would not cause the acid to back up from my stomach into my throat as I slept, take a medicine called a PPI (to help reduce the acid in my stomach), and of course, reduce my stress.

The scope, a one time thing while they were down there, and every subsequent time I had this done (currently every two years), cut out my spicy foods except to rare occasions which I definitely pay for if I eat them, and no longer eat red sauce on pasta or drink orange juice.  I have done what I can about the stress, but there are just some things beyond my control, but still have an impact on me, flaring the stress up.  Finally, the medicine I take, is not mean to be permanent, nor is the amount I need a good amount long term.  But it is all that works, and likely to be permanent as I have been on it every since.

This is how I manage my swallowing/choking issue.  There is one thing that I cannot manage, and it is the most dangerous of these conditions, because there is nothing I can do to prevent it, other than what I am doing right now, following the guidelines on anything else.

Approximately at 4am, on March 26th, 2012, for the 3rd time in my life, I faced a life and death situation, this time, being taken out of my house on a stretcher.  I was diagnosed with pneumonia, and I was septic.  Confused, because I did not even have a cold at the time, it was explained to me that I was suffering “aspiration pneumonia.”

Getting back to the Zenker’s Diverticulum.  My swallowing/choking was not the worst situation I was dealing with.  That diverticulum is a pouch, and a pouch holds stuff.  In the throat, it can hold food, or, it can hold acid, as from reflux.  And with the food and air sharing the same entry point, air inhaled, carries the bacteria from the diverticulum, into the lung.  Complicate that with the lower left lobe of my lung “dead” from radiation damage, the fact that this pneumonia was in that particular part of my lung, I was going to die, perhaps within hours.  Blood levels show that I was septic for at least 48 hours.  I have done a separate post on this incident.

I recovered only to suffer another case of aspiration pneumonia in December later that year.  Like I said, this is a dangerous condition for me, because I cannot feel it until it is too late.  Even following all the mitigation efforts, I still cannot control the reflux 100% of the time, I cannot reduce the stress to zero although I have greatly reduced the stress.  But several times a year, I am wakened in the middle of the night, with a wave of reflux that has the potential to get stuck in that diverticulum.

When this happens, I try to turn up my awareness to be prepared for another pneumonia and to do all I can to prevent it.  I have managed to keep the swallowing issue to a minimum otherwise, and I will take it.





Best Wishes For A New Year

I think the majority of us could not be more anxious to get the year 2020 over with, never to spoke of again.  Covid19 became the new worst word beginning with the letter “C”.

I was able to get some things out of 2020 that were positive.  An annual trek in January took my daughters on a detour through an actual “ghost” town, that is doing all it can at this point, at least developers anyway, to make it disappear.

A town in Pennsylvania called Centralia, famous in the area for having a coal fire burning underground for nearly 70 years, totally abandoned except for four remaining homes, had its main road closed off, deserted.  As the road no longer carried vehicles, soon vandals marred the highway, spray-painting the road until soon, it became a ritual for any visitor to the area, to leave a remnant of their visit in the form of graffiti.  This road would of course be called the “Graffiti Highway.”  Soon after our visit, the developer bulldozed dirt over the entire road, never to be seen again.  Our timing was perfect.

Another huge moment for me in 2020, was marking my 30th year, cancer free.  A party was held in my honor just before Covid started wreaking havoc.  Again, all about the timing.

Covid did take away from me as well, especially time, time with my daughters.  Until safety precautions were determined and implemented, travel back and forth was not a good idea given my vulnerabilities to the virus.

BUT, once the recommendations came out, I did manage to return to visits with my daughters again, safely, with minimal risks to each other.

2020 gave us a lot of time to think, and prepare.  We still do not know when the end point of this crisis will be, but we are now learning not only that we need to be able to move on, but how to do it safely, some would call it, “living with the virus.”  Honestly, it is not the first time we have faced a virus crisis, though clearly in my lifetime, this is the worst I have ever seen.

But here we are, finally getting to the year 2021.  And I already have so much on my calendar that I am looking forward to, Covid or not.  During this time period, I have made real progress writing my first book, based on survivorship, now two-thirds of the way finished.  I am looking forward to another great year writing this blog, and hopefully maybe making it a podcast.

Most importantly, I am looking forward to more time with my daughters.  I am so proud of how they have had to handle the diversity in regard to schooling, socialization, and more.  And they did it without complaining.  They knew the right things that had to be done.

Holy Cow!!!!  I just realized this year, I will be the father of an adult daughter.  Reality is setting in.  My emphasis on teaching and encouraging values, now turns to life survival lessons, about money and how to save it, spending wisely, negotiating, and to not be taken advantage of.  The decisions she soon faces are more serious, the rewards greater, but so are the consequences for any wrong decisions.

My younger daughter will also turn a milestone as well.  And as both of my daughters get older, they are learning more about what I have gone through in my life, through my cancer journey and beyond.  That images in the memory that make no sense, have a story behind them.  Those stories will become important to them because there will come a day, that they will need to know what I have gone through.  But that is a long way off.  I have graduations to attend and daughters to walk down the isle.

I wish everyone a Happy, Safe, and Prosperous New Year.  See you on the other side.

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