Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

02 Mar 2020
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How The Corona Virus Affects Me


The graphic shown above has been provided by the Chinese Center For Disease Control and Prevention through the BBC.  Its illustration is to show who could be at higher risk to contract the latest world health crisis, the Corona Virus.  Looking at the graphic, my odds, should I contract the virus, are not good.

Strike one, I am male.  There is only a slight edge over females.  I am at the 4th age bracket from the top with a higher risk.  But the concerning factor, is pre-existing health conditions, that not only seem to have an effect on contracting the virus, but also its survivability.  I have all four of the top factors courtesy of my survivorship from Hodgkin’s Lymphoma and the treatments I went through.  I have damage to both my cardiac and pulmonary systems caused by radiation and chemotherapy treatments that has progressed over the decades.  And then there is one issue not shown on the graphic, a compromised immune system.  As part of my diagnostic process for my cancer, my spleen was removed leaving me very vulnerable to all kinds of illnesses.  This was a common procedure before the turn of the century.

But even with the statistics that are coming out, I am not about to panic.  I have lived with my extra risks to illnesses for a long time.  I have had to deal with exposure when my daughters got their vaccines.  If any were live vaccines, I could not change their diapers because the virus would be released through their waste.  As I was aware of any co-workers seriously ill, I made the decision to go home for my own protection, if they came into work, rather than being contaminated.  During both adoptions of my daughters, I had to deal with SARS for one, and bird flu for the other daughter in China.  And in my employment, I frequently dealt with biohazards as part of my duties.  Then there was the time that I ended up with septic pneumonia, twice within a nine-month period.  I have every reason to be bordering on panic right now, but I do not.

I am of the mindset, I must do what I can, to protect myself, not rely on anyone else to do the right thing.  I do not have faith in our government, because from what I have seen, cutbacks in funding and staffing, have left our country in a precarious position to not only prepare for this pandemic, but to manage it, and treat it.  THAT NEEDS TO CHANGE!  We need people in charge with experience in the health industry.  We need testing capability and more importantly, we need treatments and vaccines for this.

Anti-bacterial soap is flying off the shelves.  Surgical masks are hard to find (and they will not protect you from this virus – I have previously written about these masks and how they do not protect us from bacteria and germs).

News stories, advertisements, opinions, and memes have all done nothing more than to stir up racism in the middle of this crisis, which is not going to help.  You cannot get Corona virus by eating Chinese takeout or going to an Asian festival.  You do not look at anyone who is Asian, and wonder, “do they have the virus?”  At this point, any ethnicity either has the virus, or has the capacity to have the virus.  And you cannot tell who has the virus by their looks.

Do you avoid travel?  Do you stop doing things out in public?  The terrorist attack of 9/11 did not stop us.  And other disease outbreaks did not stop us.  Awareness and alertness made us be more careful, as the situations were dealt with.  And this situation is no different.

At the end of the day, we need to wash our hands.  Not touch our face so much.  Cover our coughs and sneezes with the bend of our elbows.  We need to go for help when we get sick.  We need to stay home when we are sick.  It is all common sense.

Posted in Cancer, Education, Family and Friends, Side Effects, The Heart
24 Feb 2020

I Could Use A Good Stretch


I woke up this morning more stiff than usual.  Chances are, most of you reading this, when you wake up, are able to just reach out your arms as far as they go, and let out a good and sustained morning grunt as you loosen up for the day.  I am not able to do that.  I miss being able to do that.

I often get told to “cheer up”, assuming that I am not having a good day.

There is a reason that I have these issues to deal with.  Nearly thirty years ago, I received 4000 grays of ionized radiation to my upper body to treat my Hodgkin’s Lymphoma.  You do not need to work in the nuclear radiation field to know this is not a good number.  But it worked in treating Hodgkin’s at the time.

If you grew up during the time of 3 Mile Island or Chernobyl, one thing that was always feared was the long term effects of being exposed to the radiation being released from those crisis.  Well, consider my body, similar to someone having been exposed to those two events.

It is not all that bad, barely, because I actually have someone that understands how to deal with the side effects, late developing side effects from that radiation exposure.  They know the how, the why, and how to manage it.

Radiation Fibrosis Syndrome.  I am blessed to have had one of the pioneers in studying this issue as my doctor.  Combined with my other doctor who has studied late effects for treatments for Hodgkin’s, and my primary care doctor of twenty-nine years, I have the best possible chances of dealing with RFS, managing it.  RFS cannot be reversed.  It is progressive.  In other words, it only gets worse.

The pictures above were from a lecture given about RFS, that patients definitely can understand, because we live it.  But for those of you who are not patients, perhaps this might help you to understand what we deal with, is real.  And what you see with your own eyes, might not actually be what you think.

This is how we used to learn about our bodies when we were in school.  Either use of a mannequin or an encyclopedia with “slides” that overlapped showing the various systems of the body.  When it comes to the late issues dealt with by a Hodgkin’s Lymphoma long term survivor, we have become that mannequin or encyclopedia.  And as the doctor, teaches his student, whether it is educating the patient, or his interns or nurse practitioners, it can be unnerving.  Because the teaching tool is not an inanimate object or book, it is a human being actually going through an issue.

My follow up appointments were always the same.  An explanation of what has been happening.  And for those who are learning at my expense, they are doing so in real time.  My inability to stretch?  Or as many may recognize about me, my “slouch” that I have, it cannot be help.  The damage from the radiation to my shoulder muscles has resulted in pulling my shoulders forward.  If I actually do stretch, or participate in some sort of activity that would force my shoulders in a snapping action, I am likely to tear my rotator cuffs.  Without my shirt on, the doctor points to all the areas where muscle loss has progressed, one of my shoulders actually hangs lower than the other, and other noticeable points.

And looking like I am down or depressed?  Muscle loss and destruction in the back of my neck, means that the the muscles left in the front of my neck, actually pull my head forward, or downward, as in the picture above.  The technical name for this is “drooping head syndrome.”  I went through extensive physical therapy to not only make my neck strong enough to keep my head up, but to keep my aware that I need to keep my head up.  Otherwise, the option of a special neck brace can do it for me.

I have become that mannequin or encyclopedia.  For better or worse, this is my life.  I am lucky because I have doctors who are understanding what I go through, and how to manage it.  RFS is just one of the dozen of late effects that I deal with, and it just happens to be one of the issues you might have a chance to notice, if I am not being alert.

I miss the days that I could have my daughters pull my arms back to give me a good stretch or walk on my back.  The stiffness that I deal with, the acclimations I have had to make to my mobility, often leave me dealing with pain issues, which of course, lead to more problems.  Even the simple storage of dishes in a cabinet must be kept at a level that allows me to reach for without my arms raising above my shoulders.

Do not misunderstand me, I am not complaining at all.  In fact, I am quite used to this.  I have adjusted as the years have gone by.  I deal with all of my late effects as they come to the forefront.  I have my goals in front of me, watching my daughters grow.  But first, I have a major milestone coming up next Tuesday.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
16 Feb 2020

Signs Of Senility Or Chivalry


So my daughters are visiting me this weekend.  As we left the airport terminal for the parking lot with my daughters, handling their luggage, I clicked the button on my keys to unlock the car, popped open the trunk, loaded the luggage into the trunk, and proceeded to the passenger side of the vehicle and grabbed the door handle.

“What are you doing Dad?  You’re on the wrong side,” my younger daughter stating the obvious.

I proceeded to tell her that it was just a natural instinct for me to open a car door for females, a “gentleman” thing to do.

I should have expected nothing less than my little comedienne than to respond, “oh, I thought you forgot which side of the car had the steering wheel.”

As both of my daughters are of dating age, I have shifted my attention from teaching about values such as manners, respect and such for others, to the same to expect for themselves.

I told both of my daughters, it was a natural thing for me to do, without giving it a thought to open a car door, any door for a woman.  It was how I was raised.  I will put out a chair for a woman to sit upon when out on a date.  At some point, it is likely a woman of interest will get flowers (as soon as I find out what her favorite are).

My daughters know I am the real deal when it comes to treating someone with respect.  Up until the time of the divorce, my daughters saw nothing less from me with their mother.  I know that the way the last sentence was written, it gives the wrong idea, but even in divorce, my daughters never saw me disrespect their mother.

And I told them that I want them to demand the same of themselves, and any one interested in them.

So far, it has been interesting.  Once I got past the “but she is my little girl” denial that is.  A photo with a date, showing him hanging on her like “the Fonz” all cool, with a look “yeah, she’s with me,” or being flower-bombed, my daughters had two different types of boys interested, and then I saw, the next role that I had to play for my daughters.  While I had no prior experience as a father before becoming one, I did have experience as a hormone charged teenage boy.

I dealt with each situation differently, but with the same goal, to make sure that they knew, whoever was interested in them, there were going to be expectations of how they wanted to be treated.  If something felt wrong, or they did not like something said or done, they needed to let the other person be aware of it, in a calm and polite way if appropriate.  I wanted them to understand they are worth that stature.

Just as importantly, I told them that they must keep things at their pace they are comfortable with, not to force anything.  Even the simple act of receiving flowers.  While this can be a simple gesture of a gentleman, it can also be a stronger expression of sentiment, that if they do not share the same feelings, that it is not right to lead that person on in false mutual feelings.

I am super aware of the example that I set for my daughters when it comes to dating and relationships.  Just as many other examples as their role model that I set, I make sure that they know I will treat someone special in my life, like that, special.  They may see me hold hands, definitely open car doors, assist with a chair, and many other ways that show respect to anyone of interest to me.  And it is just as important, when it comes to PDA (public displays of affection), that my daughters respect themselves and keep those to a very minimum.

My daughters are a long way from serious relationships, but just as I prepared them for school, continue to prepare them for adulthood, my role as a Dad continues probably in its most important example, happiness with another.  Respect for themselves, respect for the other.

Failure to do so, will be likely to result in a throat punch from one, and the other likely to “cut you and laugh while you’re bleeding” (from Billy Joel, “Always A Woman”), okay, she may not cut you, but she will definitely laugh at you.  The other?  You bet, there will be five knuckles heading towards the Adams apple.

I miss the simpler days of feedings and diapers when I was in charge of protecting them.

Posted in Adoption, Education, Family and Friends, Inspired By..., Recreation | Leave a comment

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