Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

Double Nickels – What A Ride!


Thirty-two years ago, I was told I had Hodgkin’s Disease (now called Hodgkin’s Lymphoma so it is not as scary sounding), cancer.  I was twenty-two, just turning twenty-three.  When it came to any conversation about surviving cancer, it happened with a time frame, five years.  Statistics on cancer survivorship were based on a magical five year mark.  What happened after that five year mark, we never asked.  And if you were a cancer survivor, we just assumed the risk.  That is, until the internet came along.

Over the decades, I have met so many survivors of not just Hodgkin’s, but other cancers as well.  I have seen the barbaric testing methods now gather dust, and newer and safer treatments being used to treat the cancer I once had.  All the while this is happening, another year of survivorship sneaks up on me.  And another, and another.

Longevity does not run very high on my father’s side of the family, so adding cancer survivorship, thought for sure that would drive my odds down.  Yet, I hit that milestone 50th birthday, and this past March, I recognized my 30th year in remission of Hodgkin’s Lymphoma.

But my most important blessings, and there are two of them, are the daughters I never thought I would ever have in my life, from beginning to today, to tomorrow.  The last decade and a half has been difficult for me with my health, with all kinds of challenges related to side effects from my treatments.  But my daughters keep me focused.  My shell makes it difficult for anyone to understand what my body is going through, not realize the limits and the conditions that I deal with because you cannot see below the shell, that only doctors, images, and I know are there.  That is why I do not try to concentrate too much on numbers.  But milestones are kind of hard to ignore.

The inside joke with my daughters, is that I do not admit my age, rather “color it”, referring to a mathematical equation that will total my actual age.  But this year, there is a funny reference to this age, “double nickels” referring to two 5’s.  This birthday is unavoidable to not recognize the actual age.

I have had a few rough weeks, with the passings of several of very close, fellow survivors, either my age, even younger.  No one appreciates or recognizes their mortality, more than I do.  But, I am doing all I can, my doctors are doing all they can, my loved ones are doing all they can, to make sure that I continue on, get to see many more birthdays, and more importantly, these milestones…

pay attention trolls, this message is for you…

I will see my daughters graduate from high school.  I will see my daughters receive some form of continuing education and have a bright future of their own.  If my daughters choose to get married, I will be there to walk them down the aisle.  And if I am blessed even further, with grandchildren, like many of my other survivors, I will be there to hold them.  And a bonus, though I do not have it set on the calendar on “Paul’s Heart,” I do plan on making 50 years cancer free.

I may not be able to drive 55, but I can admit that I am glad I made it to 55.

The Power Of The Pet


I have always believed in the power of pets and healing, at least comforting, which is just as important.

This is one of only two photos I am aware of, from my Hodgkin’s Lymphoma days over 30 years ago.  Just prior to beginning my chemotherapy, I adopted a calico kitten and named her “Pebbles.”

There was just something so soothing about the purr, close to your ears, the feline vibrations soft enough to massage the physical stress away.  And though she spent lots of time doing “kitty things,” it was her behavior once I started chemotherapy that I will never forget.

On a regular basis, as I entered the door of my apartment, she always rushed to greet me.  But after my chemotherapy appointment, I “rudely” rushed by her, ignoring her, to get to the bathroom to deal with the nausea that as expected, was about to hit me.

She followed me to the bathroom, like many pets do.  Only, you could see, she was confused that I did not seem to be using the toilet like I normally would.  I was unable to pet her or give her attention.  And there she sat, just staring at me.  When I was done heaving, exhausted, it took every ounce of strength I still had left to get to my bedroom, and crawl into bed, shaking from the physical tension and muscle tightness all over.  Everywhere hurt.

As I lay in bed, Pebbles came up onto the bed, laying on my wife’s pillow (to be clear, 1st wife) until she came home from work, keeping watch over me.  This became the ritual for the next eleven treatments, every time.

Pebbles was not the first pet to have an impact in my treatment and recovery.  I had a golden retriever named Pollo.  Unbelievably loyal, Pollo went everywhere I went.  Except one time.  And that was in 2008 when I had to have open heart surgery to save my life from damage caused by treatments years earlier for my Hodgkin’s Lymphoma.

We were known to roughhouse with each other, battling over who would be “alpha.”  This made me nervous as I made the trip home from the hospital, after six days recovering, my breast bone, still precariously sore and obviously not healed.  I had no idea how to prepare for Pollo, because when I came home from work, he often jumped on me to greet me at the door.  This could not happen when I walked in the door.  But how would I control his excitement.  We had never been apart.

I could feel my heart race as I opened the door, and here he came, he was definitely happy to see me.  And then his pace slowed, soon approaching my side, and standing there, allowing me to have the opportunity to pet him calmly.  As I was assuring him that I was home, and I would be okay, it would be as if he was trying to let me know, he was there to take care of me.  No matter where I was sitting, he would lay at my feet.  If I was laying down, he was laying by my side.  I could always count on him being there for me.

It did not have to be my own dog either.  During one of my many trips to the hospital, I was often visited by fur friends who stopped in just to say “hi.”  You can immediately feel the weight lift off you when you are approached by one of these four-legged caregivers.

Yes, medicine plays a big part in your care.  So does faith, if that is what you believe.  Support from family members, and of course, your actual caregivers from nurses to doctors are important.  But just as important, in care and recovery, are our fur friends.

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.

 

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