Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “December, 2020”

A Rare Moment Of Vulnerability


The other day, I wrote of the passing of my friend and fellow Hodgkin’s Lymphoma survivor, Tammy.  I did as I often do, wrote a tribute to another long term survivor how had passed away, though this time was more difficult.

I am known personally and beyond, as someone who is pretty much in control of his environment and situations that arise.  I am not an emotional person which affords me to be able to think clearly, precisely, and quickly for each situation that I face.

Over recent weeks, 2020, in typical fashion, has been cruel.  Several of my fellow survivors that I have spoken/met with over the years had passed away, complications of their health from the treatments that cured them of their Hodgkin’s decades ago.  Of these three, and really among all of my survivor friends, Tammy was one that I knew the longest.

When I received the news of her passing, I did something I had not done in nearly thirty years, I broke down.  I lost it, emotionally.  As I mentioned, this happened only one other time in my life, decades before.

Since that time, I had put up a wall, because otherwise, the emotions that I struggled with at that time, would have prevented me from carrying on with things that needed to be done.  I had patients to counsel.  There were crisis and tragedies that I had to respond to, car accidents, fires, and even a few years ago, the ultimate pressure of getting through Hurricane Irma.  And there are the countless others that I have conversations with, often on a daily basis, helping them as they face various struggles in their survivorship.

Don’t get me wrong, I can shed tears, though admittedly I had not really done that.  But following my heart surgery in 2008, all of a sudden tears could flow more freely.  But what I am feeling right now is more “paralyzing.”  I am struggling to concentrate on things that need to be done at the moment.

I have received many comments from friends who attempt to do what even I cannot, try to figure me out.  Tammy was a good friend to me, but she was also my role model for survivorship.  Tammy was my inspiration of life.  I felt obligated that I could never complain about how I felt, because she never complained, and admittedly, her conditions were far more serious and advanced than mine are.

Her passing however, reminded me of our mortality.  We fight so hard to survive cancer, and when we do that, we spend the rest of our lives fighting the “cures” that saved us.  But Tammy was proof it was worth it.  There was so much that she got to experience in the decades that we knew each other, that she otherwise would not have.

I have been reminded by those closest to me, that I have a lot on my plate that I am dealing with, and then there is Covid19 complicating things.  Being hit with these feelings, along with the recognition that I am mortal, I am reminded that I am also vulnerable.  And it is okay to be vulnerable.  But there has to be an end at some point.  And I want it to be now.  Normally, I could just put it way back on the back burner, and move on.  Not this time.  I have gotten through others passing away, and I know that I can eventually get through this time.  But the longer I grieve, the longer I feel it will take me to get beyond the grief.

These feelings were described to me by another fellow survivor as “monsters”.  But then she also stated it is during these times, that when we defeat these “monsters”, that is when we demonstrate a true state of courage and strength.  This is what happens when we compartmentalize our feelings, and then get hit with a “gut punch,” with a passing of someone in a similar situation as us.

I remember an incident where my “first” wife, had been in a horrific car accident.  She was truly fortunate to have survived.  My mother had arrived at the hospital at 2am, and commented on my calmness all things considered.  I told her, “I will fall apart later.  Right now, I have things I have to get done.”

But later never came.  And for thirty years, I guess I always saw this as a good thing.  If I didn’t deal with the emotional issues connected to the events, I could spare the heartache.  The surprising thing, I have suffered losses of those even closer to me than Tammy, and I did not react the way that I feel now.  Then again, there was no relating the common bond that Tammy and I shared, the difficult health issues of the various systems of our bodies, that lead to daily struggles, struggles that for the most part, I never let anyone see.  All anyone gets to see is the “shell” that I let you see.

Well, now there is a crack in that shell.  In a rare moment, not only can you see that I am vulnerable, so can I.

 

Really Not A Grinch, But…


I hate broccoli.  Allow me to expand on that.  I hate all vegetables, at least the green ones, also known as “the good ones for you.”

Reality TV… cannot stand it.  Well, except for the vocal competitions, as long as they do not waste my time with those just looking for fifteen minutes of fame.

Do not call lists.  We either have them and are on them until we take ourselves off due to some masochistic issue, or leave us the hell alone.

But there is one thing that really irritates me, like having sand in your swim trunks.  And yes, I know what that feels like.  I was really not smart at five years old.

To quote Jim Carrey’s “Grinch” character… “I looooooaaaathe” these things!  Reindeer antlers for cars.  The odd thing is, I have seen other decorations on cars that do not antagonize me the way these things do, even cars totally wrapped up in Christmas lights.  But these antlers!  AAAARRRGGGGHHHH!!!!

Now, I need to give a little bit of transparency.  I am not a big fan of the holiday season in general.  To me, November and December are the grim reaper of the calendar.  I have had to deal with so many crisis and tragedy during these months over my life.  That said, I do celebrate the holidays, and to levels that might surprise you.  And as the things that have caused me such grief in these months, two of the most important people in my life, keep me in the moment of recognizing how each year, this holiday is important to me.

Yes, because of my daughters, I embrace the Christmas holiday.  Just as they helped my father embrace the holidays also.

I fully embraced the holiday.  Look at the smiles on their faces.  I had to keep those smiles forever.  I was fully committed to the role.

Every year I dressed up in a Santa suit.  My fur friend Pollo, always knew it was me under the suit, but he needed to be influenced to stay silent.  Christmas Eve, photos and video were taken of me with Pollo, eating the cookies and drinking milk, even putting presents under the tree.  And then, to reinforce the belief in the big guy, I showed the proof beyond the half-eaten cookies and now warm leftover milk, photos.  And much clearer than the photos of Big Foot.  Unfortunately, this was the final year that I did this, because, I was lazy.  And lazy got me caught.  My older daughter, who can find an earring back in three inches of shag carpeting, something unusual about Santa.  “Why is ‘HoHo’ wearing your sneakers Daddy?”  The gig was up.  I got away with the initial explanation of him having dirty boots, he took them off, and my sneakers were by the fireplace so he put them on, not be rude walking barefoot in our house.

And I am not against decorations.  Quite the contrary.

Every year, the day before Thanksgiving, I was outside, working on the thousands of lights that I would put up.  The picture shown is incomplete, because I had lights along the roof, and over 12,000 lights strung in my huge holly tree.  And there were hand crafted wood ornaments I had not put out yet.  My point is, I am not anti decoration.

But there is something about these things, that I cannot let go.  I am not a hunter.  So it is not a primal urge to shoot at something resembling a deer.  I just cannot explain the feeling.  Making it worse, don’t let me see that stupid red nose on the front grill of the car.

You don’t think these things don’t belong on a car.  Let me prove you otherwise.  Besides the fact that I think they are stupid (I know many will not share that sentiment), they are actually dangerous.

WHAT?

That’s right.  Sure, they may look cute driving through streets looking at houses decorated for Christmas, where you are driving five miles an hour.  But they are not meant for higher speeds.  Allow me to explain, because I actually get joy out of this.

These antlers are not meant for high speeds, unlike Santa’s actual reindeer.  And if these antlers have bells attached for authentic reindeer sleigh bells, even worse.  So, while one Christmas season, driving to the Poconos via the Pennsylvania Turnpike, there arose such a clatter, against my driver side window as I drove on cruise control at 70mph.    That clatter got louder and faster, and then all of a sudden, there was silence.  At least from the driver side of the car.  The passenger side was still noisy, but not as loud with my distance from it.

When we got to our destination, it appears our “reindeer wannabe car” had a mishap.  It broke an antler.  Funny.  Hysterical at least to me, because I never liked it in the first place, nor did I like feeling emasculated driving a car adorned with this crap.  But for the other passengers in my car, including my daughters, they wanted to laugh, because they saw that I saw it was funny, and “daddy is always funny.”  But the other parent was not amused, in fact, actually accusing me intentionally of driving a speed that somehow I knew would cause injury to the antlers.  Right.  Because I obtained secret information from the factory warning of antler stress fractures due to high rates of speed of 70 mph or more.  It was a conspiracy.

Just like in Scooby Doo, I had been caught like Mr. Chaumers.  I was glad that antler broke off.  But now I wondered whatever happened to the flying projectile from my car.  Did it fly into the windshield of the car behind me, either cracking the windshield, or worse, causing the driver to panic, perhaps getting into a car accident?

I may have not been thinking it originally, as to why I did not like these things.  But I do know now why I don’t like car antlers.  They are dangerous.  May not seem like it, but they have the potential for harm.

At the least, once Christmas was over, then the f*@cking Easter Bunny ears, nose, and fluffy tail were purchased next.  And those met a similar fate.  But that is a different story and a different season.

 

Understanding Drug Interactions


I got an unusual phone call the other day.  It was from my pharmacist.  She wanted to make me aware of two medicines that I was having renewed, they could cause a potential problem.

Unfortunately, while typically I write about my experiences based on the world of cancer, there are literally millions of people, either currently or in the past, having dealt with Covid19, need to be aware of the medicines and potential interactions.

Up until around 2008, all I had really taken was a prescription for my thyroid, damaged from my radiation therapy for Hodgkin’s Lymphoma, something for my high cholesterol, and to help with my blood pressure.  In 2008, that all changed.  To date, I now take nine different medications, all related to the late effect issues that I deal with.  In twelve years, this is the first time I had heard from a pharmacist personally though.

I have a large number of doctors that I deal with, and I trust them with the medicines I need to take.  I trust them to be aware of any interactions between the medications, and to weigh the benefits and risks.

In 2019, I had to have yet another procedure, the second on my heart.  But unlike the open heart surgery I had in 2008, this procedure was going to involve a stent (ironically for an artery that they knew about in 2008 with the other surgery, just did not fix it).  Because of the stent, I would need to take more than the baby aspirin I took from my open heart surgery.  I was prescribed an actual blood thinner.

Later in the year, I saw a different cardiologist, who noted on my record, the list of medications that I took, and noticed a medicine I take for gastrointestinal issues.  He was concerned.  As he stated, there is a likelihood that that medicine and the blood thinner interaction could actually negate the benefit of the blood thinner.  I would need to change the medicine I took for my stomach.

There was only one problem with that.  No other medicines are able to handle the issue I deal with for my stomach.  We are talking quality of life at this point.  Not to mention the fact, not being able to take this medicine would also increase risks of complications with my GI system, and likely lead to aspiration pneumonia (I have written other posts on this).

Then the suggestion, was to try a newer blood thinner.  The problem with that, the cost was enormous and unaffordable.

As a consensus made among all of my doctors, 95% of us, including me, agreed that I would continue on the path that I had been for the last year.  And that was the last I had heard of it, until the phone call from the pharmacist.

I want to be clear.  I completely am so appreciative for a pharmacist who does so much more than just fills prescriptions.  This is the first time in my life, I have ever had a pharmacist even tell me of a potential conflict.  Up until then, if you wanted to find out about conflicts, you went to the web site drugs.com for the potential issues.

Now, with Covid19, and the treatments for it, things get really complicated for me, but not necessarily a cakewalk for someone who has never had cancer.  You still need to have that awareness.

One of the early popular drugs thought to be helpful, now disproven, when combined with an antibiotic, could cause cardiac issues.  The use of steroids?  Not when you have a known heart condition.  Treating someone like me who has a history of a drug called Bleomycin (for my chemo) with oxygen, a huge no-no.  I have spent decades being aware of the medicines I need to stay alive, or save it.  Even foods you eat can impact a medicine you need such as grapefruit.  Certain statin drugs (for cholesterol) actually have their effects reduced by grapefruit.  If you take a medicine for your thyroid, they tell you not to take any other medicines with it, because the drug will affect the absorption of any other medications.  I have learned way more than I have ever wanted to about medicine and prescriptions.

It would be just so much easier not to have to take any of them.

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