Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “February, 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.

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.

92% – Does The Majority Really Matter?

In a recent USA Today headline, “Our System Is Sick”, the claim is that 92% of all Americans want changes in healthcare.  Some of the stats shared by USA Today:

95% want affordable car

94% want lower prescription drug costs and affordable and accessible coverage of pre-existing conditions

93% access to doctors and hospitals

90% improving health care itself

85% want all to have health coverage

That last stat is really kind of odd, and actually quite a large number to object to coverage for everyone.  I really do not understand that, unless, UNLESS, to want everyone to have health coverage, that would mean you would have to concede that health care is a basic human right, and not a privilege.  Some Americans just are not willing to accept that concept.  And that is sad.

Being a cancer survivor, I have a HUGE vested interest in this fight.  At the age of 21, I was invincible.  I was immortal.  I had also previously dropped my health insurance that my parents had been paying for me.  I was healthy.  Why would I throw money away into something I was never going to have to use?  I would be giving money away, for nothing.  My history shows just how disastrous that thinking was.

Another political season is upon us, and that means of course increased arguments and more importantly, more empty promises when it comes to what to be done about health care.  Yes, I am a cynic about this.  Having a huge interest in health care personally, over the years I have become a single issue voter, and that issue is health care.  In my nearly 30 years of survivorship, we are not much better off than I was back in my cancer days.  And it has not mattered who was president.  Clinton brought us HMO’s, which was a discounted health plan, but you traded the lower cost for a lot more bureaucratic bullshit when it came to getting cared for.  If you had something actually wrong, you were restricted who you could see, could be denied critical testing until you exhausted appeals until your situation was dire, or worse.  The Affordable Care Act (ACA), was supposed to be a huge step toward making health care affordable and accessible, but it too had flaws, a lot of them.  The biggest flaw?  Not correcting and improving those flows.  But with fighting from both political parties, ultimately, the losers were Americans dying for affordable and accessible health care.  The huge step backwards came with the current president, who chipped away at the ACA, as the entirety of the act hangs in the balance of total repeal, in spite of him promising “the best health care ever.”  Three years into his presidency, nothing, except he would deal with it once re-elected.

I do not want this post to be about the failings of all of our presidents to do the right thing, and that is to make sure that every American has the right to affordable and accessible health care.  Instead, I want to refer back to the statistic above, 85% of the people surveyed want all to have health insurance.  I want to talk about that 15%.  That 15% is the reason, and evidently enough to prevent any kind of solutions to our health care crisis.  It was believed that a “public option” to the ACA would have made a difference.  It never happened.  And there is plenty of talk about “Medicare For All”.  And that is all that has really happened for three decades, lots of talk.  And you know what has happened in all that time?  A lot of people have died, waiting, hoping.

So who might that 15% of America be that do not want every American to have the right to health care?  I have some theories.

The Health Insurance.  I have spent a lot of ink bashing the insurance industry, deservedly so.  The basic concept of insurance, you pay them money in case you get sick.  They only make money, if you do not get sick.  Well guess what?  Just as I found out at age 22 getting diagnosed with Hodgkin’s Lymphoma, plenty of people find out they actually do get sick, and many cases extreme.  The only way for the insurance company to survive, is to either raise premiums (and all of the other components such as co-pays, etc.), deny coverages, or deny patients.  So yes, the insurance industry is one of the big bad guys in the health care crisis.

Now it also needs to be stated, I have many friends who work in the industry.  They get paid to administer, sell, and answer all forms of issues.  It is how they make their living.  These are very good people and would lose their jobs without the health insurance industry, though I am sure in a government run health care program, they would have that option, as well as the many benefits of a federal employee.

As many candidates for president either push for elimination of the insurance industry for health care, others opt for a side by side option with federal and private insurance, the truth is, the health insurance industry will not survive a “Medicare for All” or hybrid.  “Medicare For All” shuts the insurance down completely, but those who offer MFA as an option, in hopes of driving down premiums and other costs, the insurance industry simply gets choked out if it cannot charge enough to make a profit.  Seriously, why would you pay a higher rate for the same coverage?

Taxpayers  The boogie man here is the word “tax.”  Nobody likes taxes.  And the only thing worse, is an “additional tax.”  But as anyone with a 3rd grade education should be able to do, figure out the math benefit of an MFA versus traditional insurance coverage.  I want to be clear, I am using simple and basic numbers, not actual numbers, but the example is used to demonstrate the impact.

A tax of let’s say, 10% is taken from income.  An annual income of $45,000 would be taxed $4500 for the year health coverage.  Currently, and I do know this as fact, a single policy holder in Florida can pay $1600 per month even having no pre existing conditions through Blue Cross.  This amounts to $19,200 per year.  Again, put the mind of a 3rd grader into your head… which is better for you?  Paying $4500 a year, or paying $19,200 a year.

There are actually people, and I know several, that have no problem paying nearly $15,000 more than they would need to pay, as long as they were not paying a tax to the government.  The literal definition of cutting your nose off to spite your face.  The war cry “I don’t want government involved in my health care.”  The people with this attitude have accepted their belief to rather be broke or denied health care, than to pay a tax to the government.  But this group needs to go a little further into detail.

“Christians” and other people just worried about themselves  I remember as far back as the 1970’s and 1980’s, we used to be a nation that cared about others, the homeless, the unemployed, the sick.  Now I purposely used the word “Christians” and had it in quotes, because there are those that hide behind that title and yet contradict the beliefs of their religion, to care about others.  And here is why I shut that argument down.  I actually have friends who adamantly state…

“I am not paying for someone lazy to have health insurance.”  Their use of the word lazy is really vague, and I imagine it is on purpose.  Because if you pin someone down by asking why you think someone is lazy, unless you are 100% aware of the circumstances of an individual, you have no idea why.  And honestly, why is it anyone’s business why someone is not able to work, or unable to find work.  It makes no difference the reason why.  You know the expression, “don’t judge a book by it’s cover.”  We are no different than a book.  I am a bit more open about the health issues that I deal with, and therefor do not usually get called out, anymore that is.  But there are those who do not make their issues known publicly.  And who are we to judge their circumstance?  Do we not have enough on our own plates to worry about?

So if we deal with the insurance industry, and get people to understand common sense that it better to pay a lower figure tax as opposed to a high profit premium, we still have the thoughts of not wanting to help others as the speed bump to lower health costs and affordability, even if it meant better for themselves.

Look, health care was not complicated decades ago.  And everyone was taken care of.  I had to ask my mother how my care was handled as a child.  She paid $5 for an office visit.  And I recall a hospital surgery in my early childhood, that, my mother, a single mother at the time, was not forced into bankruptcy with the bill from the hospital.  And admittedly, there was a thing called “malpractice” lawsuits that increased health care costs, because doctors had to carry insurance against those lawsuits.  And because that made healthcare costs rise, the need for insurance came along.  And then, Big Bad Pharma found their goldmine.  If I needed medicine from my doctor as a child, guess what, the medicine was given from the doctor’s office itself.

We know the reasons for the high costs of health care.  We know this can be dealt with.  We know that the majority of Americans want it dealt with.  Why are we still just talking about it?  If you are a candidate for president, I am listening if you want my vote.  Every other industrialized country covers its citizens, not profiting off of their sick.  Sure there are problems.  But those problems are no reason to just keep talking and do nothing.

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