Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

06 Apr 2015

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.

Posted in Cancer, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
05 Apr 2015

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.

Posted in Bullying, Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
31 Mar 2015
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My Dad Was Just Like Me


Every year, I make a contribution to a book called “Visible Ink.”  This is a book published via Memorial Sloan Kettering Cancer Center, written entirely by cancer patients and survivors.  This year, marked the seventh edition.  I submitted two pieces, and the following piece is the chapter that was selected for this year’s book.  The story is very personal to me, a tribute to my father who lost his battle of lung cancer last May.

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“Like Father, like son.” A timeless expression echoed by the lyrics to the song, “Cats In The Cradle,” popularly recognized from Harry Chapin. The song tells the story of the birth of a son, the absence of the father in his life because he is trying to provide for his son. When the son is grown and on his own, the father tries to capture moments of fatherhood, only to find out his son is busy juggling his own life between work and family. One of the final lyrics in the song, the father says, “As I hung up the phone it occurred to me, he’d grown up just like me. My boy was just like me.”

last photo of my dad and I before his cancer

For years I had often wondered, what would have reminded my father about me. But it was during my father’s battle with lung cancer, I discovered a new expression, “like son, like Father.” Most people grow up with two main role models in their life, their parents. But how often does a child get thrust into the role of role model for a parent?

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My father had reached out to me, a long term cancer survivor, because he had just received news that doctors think he might have lung cancer. Though the news should not have come as a shock for a sixty-year-smoker, a spot on his lung was confirmed by a PET scan. My father was now the fifth family member besides me, to be diagnosed with cancer. And up to this point, I was the only one who had survived.

most recent portrait

The times had changed dramatically even in just over two decades since I had been treated for Hodgkin’s Lymphoma. There were better options available. Better technologies were to diagnose patients. Even the chemotherapy suites were more inviting, like a local coffee shop complete with meals and entertainment.

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As time went on, my father underwent successful surgery to remove the tumor. Under doctor’s recommendations, my father underwent both chemotherapy and radiation therapies for preventative measures. It was during the radiation treatments, something went horribly wrong. Though there was no evidence of his lung cancer present during even the chemotherapy, some cells that had survived the chemo had transformed into an even more aggressive, and rapidly growing cancer.

We were all gathered by his side when the doctors came to discuss the situation with my father. His cancer was now terminal. My father always knew that lung cancer had been a possibility, and that he had cancer, and might die from it. But up until that moment, he believed he would beat it. Refusing to give up hope, although acknowledging the doctor’s prognosis, my dad’s response to the doctor’s final question, broke me down into tears due to the words, I was not prepared to hear.

The doctor and his care team had just explained to my father all the things that they would do to care for him, as the cancer progressed, to keep him comfortable. But my dad’s denial and defiance shined bright when the doctor asked, “What is one thing we can do for you right now?” My father responded, “I want to be a survivor like my son.” He pointed over to me as everyone in the room turned their heads in my direction.

the last photo with my dad

This hit me two ways. I beat my cancer, Hodgkin’s Lymphoma. I had his genes, his personality, his pride, his determination, and perseverance. If anyone had a better chance of defying a cancer death sentence, it was my father. I survived cancer. My dad witnessed it could be done.

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But in that same moment, I saw his comment for what I truly think he meant. We never expressed feelings in my family, and up to that point, my father and I could have just been two ships passing in the night. But I took his words that I will always remember, he was telling me that he was proud of me. I had never heard that from my father before that moment.

He would live another three months. And as I sat by his bedside each and every day, we share memories that we remembered, and memories that we did not share in the past. We forgave each other for things we had done and said. And during the night before he passed, as he lapsed into a calm and peaceful state, for the first time in our lives, he heard my voice, not in spoken form, but in music. As I said goodbye to my father, who was a true survivor and just could not recognize it, I sang to him, the words that I could not speak, “Cats In The Cradle.”

his empty chair the day he passed

In the end “Dad”, your boy is just like you. I am glad we had the chance to know that.

Dad, I miss you so much.

Posted in Cancer, Family and Friends, Inspired By...

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