Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “January, 2021”

A New Goal, And Within My Grasp

“Where the Hell are you?” was an email that I received recently.  Understandable.  It has been a while since I have written.  Not that I have been at a loss for topics, not with hundreds of prompts in my cue, and at least five current prompts in my head at this moment.  In fact, I was in the middle of a post, when I closed my laptop for the last time during this period.  I will address that in a day or two.  Instead, I want to share something that I got to experience this week.  Because if you think it is a great accomplishment, for someone to reach a longevity of 30 years, cancer free, this week, I was humbled.

Back in 1988, when I was diagnosed with Hodgkin’s Lymphoma, or as it was called then, Hodgkin’s Disease, there was only one thing that mattered to me.  Prove to me that it could not just be beaten, but that you could survive a long time after treatment.  There was no internet for me at the time.  In fact, the only others that I even knew that were even dealing with the same cancer as me, were three other “kids”, though I never saw them during my treatments.

My uncle had told me of a friend of his that had beaten Hodgkin’s back in the 1970’s.  “Great,” I would say to myself.  How do I get to meet him with my own eyes, see for myself?

Finally, towards the end of the 1990’s, evidence of survivors began to appear, through the world wide web.  Heck, I even got to meet some.  Oddly, for those that I did get to meet, it was not so much about longevity, but rather, the many complicated health issues that they were dealing with, due to late developing side effects from their treatments.

But as I officially entered the world of survivors dealing with late issues, I finally began to recognize just how long many of these other survivors had been around, decades, one even as long as over sixty years.

Last year, on March 3, I recognized my 30th anniversary since defeating the beast.  Spending all that time looking for others who have lived long lives after Hodgkin’s, I was not paying attention to the achievement myself.  And as my health issues continue to add up and get complicated, I must admit to wondering, “how much longer?”

It is a reasonable question, given what our bodies got put through decades ago with treatments.  And I have buried many survivors whose bodies just got “tired.”  This does not mean that I go through life watching the biological clock, sulking, waiting.  Quite the contrary.  And this past week, I confirmed why.

Not only has diagnostics, treatments, and prognosis improved over the decades, so has technology.  On Thursday, a Zoom conference was held among fellow Hodgkin’s survivors.  This month’s topic… the 50 year club.  That’s right!  Guest speakers were survivors of Hodgkin’s Lymphoma who were over 50 years in survivorship.

There were four of them.  Three were teenagers when they were diagnosed.  One was just five years old.  To put that in perspective, I was twenty-two when I was diagnosed, still considered young enough to be in the group of pediatric cancer.  But as the screen grew with participants, many had added the survivorship number to their screens, and soon I saw many others, beyond 50 years in survivorship, and many others in forty years plus survivorship, and the balance, those of us, in the thirty year class.

At one point, personally, I felt that hitting 30 years of cancer survivorship was a big deal.  And it is!  Don’t get me wrong.  But all of a sudden, in front of all those fifty year survivors, I felt like I had any years of survivorship put in, as if the final day of my treatment.

My survivorship of Hodgkin’s Lymphoma, like many others, has come at a pretty harsh price in the form of late side effects from my treatments, that never seem to end.  But I do not live my life in fear of those issues.  I have two daughters that are every part of my survivorship.

And I have a lot of plans that still involve both of them.  And guess how long I expect that to take?  That’s right, at least twenty more years.  My calendar on this page notably marks my 40th year mark, the next milestone I expect to hit.  I know that it won’t be easy.  But I will get there.

Being humbled to have gotten to witness meeting so many other super long term survivors of Hodgkin’s Lymphoma, I know that it can be done.  And I am going to do all that I can to get to that point.  In 1988, I never would have thought that would be possible, because I just could not see it with my own eyes.

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.

Would You Run Into A Burning Building?

Author and Yale Professor Nicholas Christakis in his book “Apollo’s Arrow” in describing humans as a species states, “The imperative to be generous is hardwired in us, and indeed the survival of our species has depended on an exquisite balance between altruists and free riders, between the people who run into a burning building to save lives and the people who take advantage of others.  Across time, humans evolved to live socially, and cooperative impulses won out.”

Christakis wrote further, “Evolutionarily speaking, however, when it comes to our response to collective threats, something even more fundamental than cooperation is going on.  The very fact that we knew what to do when the pandemic struck partly reflects another extraordinary ability in our species; the capacity for teaching and learning.”

We are the only species capable of this kind of behavior.  Other species survive by nature.  We have the choice between nature and nurture.  Over the last couple of decades, there are less people willing to run into burning buildings to save a life because it either does not concern them, or there is nothing in it for them.  It was not always like this.  I remember the times when it was not.  It is the way I was raised.

For the record, and not for a pat on the back, I am someone who will always run into a burning building to save someone.  While I have not actually had that particular experience, there have been events that are on that same level of danger, requiring me to think of others, before myself, leading me to act.  While no act of danger, acts of kindness also work that same way.  Back in the day, we called it “giving the shirt off our back.”

But as a child, and young adult, this is how I was raised, and how I remember people.  I remember us all caring about each other.  I know that I have a tendency to be self-absorbed in my personal world, I did not pay attention to when many changed to a society of impulsive people “taking advantage of others.”  I struggle with this, because I do not concern myself with help someone may receive.  I am not aware of everyone’s personal circumstances, and who am I to worry about them in the first place?

I really struggle today with what is going on.  It makes no sense to me.  Even as recent as the attack on the US on September 11, 2001, we were still a society that could unite behind each other, to look out for each other, to help each other.  What is it about that day that made us want to stand with each other, while in today’s crisis, we could not be further apart?  But unfortunately, this is exactly where we are, how Christakis describes, selfless or selfish.

Could it be because we do not see the physical destruction of property with Covid that we saw on 9/11?  That with all the rubble, we were able to put a face on the three thousand plus dead to make us more concerned, more resolve?  Perhaps that is part of it.

We are now numb, to 9/11 daily tallies of Covid related deaths.  And whereas we could blame someone else for the terrorist event and the deaths that came from it, there is no face to tie the Covid crisis to.  Sure, in the beginning, we were able to hear some of the stories of those who lost their lives to the virus, and at that point, we still had hopes that Covid would not end up as dire as predicted.  But then those predictions came through, and we could not keep up with putting faces to the death totals.  We have become numb to the totality of lives lost of over 360,000 human lives, as those who try to deny the reality, by minimizing the loss to a smaller and much less scary number, a percentage, less than 1% fatality rate.  Sure, that one percent does not look bad at all.  But so far, that 1% has still produced 360,000 human lives gone forever.  And that can never be acceptable.  The difference in the outlook, selfless, or selfish?

As Christakis pointed out, we know what to do.  We may not have known at the beginning, but we learned.  Again, no other species can do that.  But we have an issue with our country these days, lack of trust.  That lack of trust does not deserve to be thrown on the back of the scientists.  Again, they can only do what they know, and what they learn from it.  That is our advantage as a species.

People that run into burning buildings to save lives, and impulsive people taking advantage of others.  That is literally where we are right now in dealing with this Covid crisis (and other issues).  Unfortunately, too much noise has been allowed to infiltrate the minds of our citizens, solidifying the distrust that so many have.  The misinformation about mitigation efforts, the defiance to cooperate, all in effort to help a loved one, a friend, or even a total stranger, no longer matter to some.

When this is done, I do hope that as Christakis pointed out, our species can learn from this.  I am not too concerned about his other concern about when this is over, a revitalization of the “roaring 20’s” of the 20th century, but a 21st century version with all those who have “run into burning buildings to save others” following mitigation recommendations.  We definitely will have earned it though.

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