Paul's Heart

Life As A Dad, And A Survivor

Pinochle


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One of my favorite things to do, during my break at work, was to sit at our break room table and play a card game with co-workers, called “pinochle.”  It has been awhile since those days, and I do not really remember all of the rules, but I definitely remember the object of the game.  The game is played with four people, with teams of two partnering up.  With the cards dealt, each team tries to outbid the other team to gain control of the hand, and then it is up to one team, to meet the number of points that were bid, and it is up to the other team to prevent that from happening.  Seems like an even challenge, two versus two.

It is a relatively easy game to learn, but it can be frustrating for a seasoned card player, accustomed to playing the hands of the game with certain strategies and certain cards being played to either make the bid, or “set” the other team back in points.  But there were many times, even after years of playing the game, I would be paired up with someone, who definitely was much better at the game than I was, would make the following comment at me, “playing with you is like playing against three people,” making reference that my plays actually helped the other teams.  It was not something I did intentionally.  It is just that in this game, and I stress it was just a game, I was not playing to win at all costs, and this frustrated him.  I played the game because I enjoyed it.

But in life, there is a concept very similar to the comment made by my former co-worker.  While not everything in life may not be perfect, or work out perfectly, and those involved in life, and notice, I am not saying the “game of life”, because life is not a game, actually can create the same atmosphere, whether unintentionally or on purpose.  There are those that you count on, to work with you, to understand you, to support you, which is not to be confused with “siding with someone,” but when their decisions are made, much like certain moves made in pinochle, it feels like you are taking on more than you thought.  Only there is more at stake than bragging rights at a card table.

Managing Meds


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It happens in an instant.  You can spend your entire life, having taken nothing more than vitamins, but with a trip to the emergency room, or a diagnosis of a serious illness, as if you did not have enough to deal with, you will most likely be introduced to the world of prescription medications.  So, now you will not only have to deal with possibly a life-changing situation, but now, you will probably be concerned with side effects from the new medications, as well as learning how to take the many new medicines that will become part of your every day life.  You will have to learn the timing of taking these medications as “absorption” of the drugs is just one of the situations that can have an impact on the effectiveness of the medicines.  There are foods that need to be avoided, and some actually increased.  Times in between taking certain combination medications.  There are many other issues that can impact “when” you take a medicine.  And for someone who has never taken a prescription medication for the long term, even one drug, having to take a regimen of drugs, and scheduling when to take them, simply put, can be overwhelming.

For me, my life turned upside down in 2008 with my heart surgery, a result from radiation damage for my Hodgkin’s Lymphoma back in 1988.  All of a sudden, I was taking 7 prescription drugs, along with several supplements for calcium and vitamin deficiencies.  For the most part, my meds were all single dose per day, except for one of my most critical drugs, for my heart.  That was taken twice a day, but I was having a hard time remembering to take that second dose.  It was determined that I could take a similar drug, with extended release action.  Regardless of the consumption being ideal to the medical world, I took all my pills at the same time, as part of my bedtime ritual, this way I would never forget to take them.  And for me, it has worked.  Again, not the way the doctors would like me to take the meds, but my body has done okay (just) with this method.

But then, one of my medications needed to be increased, and I was forced to once again, go back to having to take a med twice a day.  And having concerns how to remember, I did something I saw only elderly do…

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I bought a pill box organizer.  I was still able to take my pills at night, but to make sure that I remembered to take my pills in the morning, I always had my car keys sitting underneath the box.  There was no way that I would forget.  The system works when someone has all their mental faculties.

But what happens to individuals who have no one to care for them, and yet, must be trusted to remember to not only take their medications on time, and the correct dosages?  And follow all of the other instructions with each prescription?

My father’s situation was not just a typical example, but unfortunately all too common.  A combination of effects from two strokes he suffered during surgery to remove his lung cancer, complicated with cancer cells spreading to his brain, my father, not only completely independent his entire life, but also the caregiver for his wife permanently injured in a car accident, he was unable to monitor, and administer not just his pills, but his wife’s also.

We had hired caregivers, round the clock, but my father was notorious for sending them home.  His attitude was, his house, his rules.   I wanted to kick his pride right in the ass.  But even when the caregivers were there, they were not allowed to administer or even remind him, to take his pills because that was not part of their job description, officially or legally.

So, in the beginning, of this stage of my father’s life, I drove an hour, each direction, just to manage his medications, and my stepmother’s.

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I had to arrange two different boxes, and then somehow, figure a way to make sure that my father did not mix the two up.  I had to take a sheet of paper for each of them, write their name on it, and the name of each drug, dose, and how many times a day on it.  Then fill each container for both.

Within a week, I got a call from my father, that he had extra pills left over from earlier in the day.  I made the drive up to his house, and found out this did not just happen once, but several times.  I had to come up with a different solution.  I could not afford to stay with my dad, nor could I make daily 2-hour trips every day.

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After research, and some assistance from FB family members, I found out about an alarm clock that had multiple settings, just for the purpose of taking medications.  I could program it, and it would go off, reminding the patient to take the medications at that time.  The only thing was, I was relying on my father to remember why the alarm would be going off.  But for now, it was the best solution yet to deal with the mileage that I was putting on my vehicle just for managing his medications.

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Then I learned about something new, courtesy of my father’s pharmacist.  Most chains now have a delivery service.  The pharmacy gets the prescriptions, and prepacks them into the organizer, and then delivers them, normally at no extra cost. I want to make note, I was not trying to get out of the weekly chore or travel of managing my dad’s meds, but I knew as time went on, my father would need our efforts more as his condition got worse.  But for the time being, this system worked well, even my father who was not a big fan of trying something new, liked the idea of having the pills delivered already prepared.  Combined with the alarm settings, the system worked until the time came that my father approached his next level of care.

For those of you reading this post, if you are in this situation, I know how stressful, scary, and intimidating it can be.  I wanted you to see that there are options available to help you if you are thrown into this situation.

Playing The Cancer “Card”


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Imagine, it is hard enough to deal with a cancer diagnosis, struggle through the steps of the staging process, tolerate the brutal side effects, and manage the days after treatments have ended, worried about if the cancer is permanently gone.  For long term survivors like me, who have health issues to deal with, cancer has been the least of our worries.  But as if fighting our own bodies and mindsets were not enough, most of us in our lifetime will hear this phrase at least once, “playing the ‘C’ card, eh?”

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You pretty much have to intimately know the person making the comment to figure out if the words are meant lightly or critically.  Regardless, the insinuation that a cancer patient, or anyone dealing with a serious issue, would use their illness to acquire special favor or assistance.  I know speaking for myself, as I struggled with my cancer, and survival, the last thing  want is anyone to feel sorry for me, and at many times, to assist me or “baby” me.

I wrote in a previous post about co-workers who felt I was getting special favors at work, while I battled my cancer.  I dealt with other co-workers who, just because they saw me walking my neighborhood a week following my open heart surgery, felt I should be back at work.  I have a whole list.  My case is not unique.  We strive so hard to be treated normal, and without pity, that without external signs of what we are dealing with, we are not allowed to feel bad ever without being accused of using the cancer card.

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Unfortunately however, I think our society has become desensitized because of so many who take advantage of systems.  We have all seen it.  A shopping center parking lot, someone is using their parent’s car which just so happens to have a handicap tag on it, and so, feels entitled to use the handicap parking space.  No one will notice, or no one will care, right?  Especially the one illegally using the handicap tag.  And then there are those we feel, who are not justified in even possessing tags like pictured above.  But if there is one thing I have learned, even after witnessing someone with a handicap placard being used on a pick-up truck, with “monster truck” sized wheels, there was a reason that placard was there.

Even Disney has adjusted their policies on allowing those with certain special medical needs while waiting for lines.

There is no scheme involved when a cancer patient or anyone else dealing with a severe health issue, needs to ask for a break, some assistance, some understanding.  This does not mean that we are playing any kind of “card.”  It simply means that today just might not be one of our best days.  And if you were to ever have to go through exactly what I am going through at that particular moment, you would understand that.

Cancer patients have very important needs, especially as far as exposure.  With immune systems challenged to the point of having no immunity system, there are many precautions that need to be taken so as not to be exposed to anyone have the common cold, or being exposed to someone who has refused vaccinations.  Fatigue is another major issue, especially during treatment, and in the weeks, possibly months following treatments, where a person just is not able to keep up.  In spite of having all their hair back, weight back to normal, and other things that remind you of how the person was before cancer, does not mean that there still are not issues being dealt with.

I possess a handicap placard.  And it does occasionally get used in certain circumstances.  Typically weather related when the temperature is too high, or the humidity is also.  The impact on my lungs is severe.  And as opposed to being held hostage inside my home, I do like to get out, and that means that the sooner I can get from my car to a building, and vice versa, the least time I have to spend recovering from gasping from air.  But by simply looking at me, you would never know this, unless you knew me.  There are other issues I deal with, but you only need to know this one example for the purpose of this post.

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So, for those of us, who deal with issues that require us to take extra time, ask for help, or just not be able to do something, it is okay.  And if we are accused of playing a “card”, so be it.  We have nothing to be ashamed.  But for those who feel the need, even in jest, to say “oh, playing the cancer card” or “oh, playing the heart card,” you cannot control how we receive that comment, and depending on what we are dealing with at that moment, we could end up feeling a lot worse.  And I do not think most people want that.

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