Paul's Heart

Life As A Dad, And A Survivor

Another Candle Burns

Again, I am mourning.  Yesterday, I was informed of another long term survivor of Hodgkin’s Lymphoma in my circle had passed away.  And I want to clarify what I mean as a “long term” survivor, as I do not want any of my recent followers or readers to believe that this is a potential fate for them.  Because in reality, as much as they may be annoyed by this fact, cancer patients today, now have a protocol in place, to be followed up for the rest of their lives for any possible late effects, to catch them in their beginning stages before there is a chance to develop into something major, like I have written in the past.

This is always tough news to receive amongst my fellow survivors.  Because those of us who have been diagnosed with issues related to our treatments 20, 30, 40 years or more ago, until recently, had been forgotten.  And only upon learning our medical status, did we only have a chance for ourselves to finally breath, knowing that we were not crazy with the way we felt or that our bodies felt.

I belong to many groups related to Hodgkin’s Lymphoma and long term survivorship.  Each group has a large membership based in the hundreds to the thousands, spanning the globe.  And what we get from each other, we cannot get anywhere else, including from our own caregivers, understanding and knowledge.  But this fraternity comes at a price, emotional attachment.  And that price gets paid, when we receive word that another survivor has passed away.

Yes, it can and does get overwhelming.  Some of my fellow survivors must step aside, because of the overwhelming feelings, not just for the loss, but out of fear what they may face one day.

As survivors, we can do one of three things.

We can just walk away, and live the best life we can, oblivious to the ills tormenting our body.  When our time comes, it comes.  What we do not know, cannot hurt us, and in the end, we will never know.  But boy life will have been great.

We can know what is wrong with our bodies, and do what we can as it happens, but not spend any time dealing with the issues while they are manageable.  Because that would mean us thinking about our fate, and that is just no way to go through life.  Instead, “okay, dealt with that.  Time to move on.  Oh, another crisis, deal with it, and move on.” And so on.  The only problem with that, is if we wait too long to deal with an issue, it becomes to late or at best too major.

And the third option, the one that I prefer, is to accept what has been done to me, to give me nearly thirty years of survivorship.  I have had four major events in my life since my HD days, all caught “last minute”, because I was not followed up properly.  I was living life, travelling, playing ball, and spending time with my kids.  But those first two options have not been an option for me over the last eleven years.  You see, I need these issues dealt with before they become too extreme.  My late effects doctor told me, our goal is to not only witness my daughters graduate, possibly get married, and maybe even give me grandchildren.  But there is only one way that this can happen.  And it goes beyond taking care of myself, knowing the late effect issues, and having them taken care of.

It also takes the many people I know, who have been there, done that.  We all rely on each other as survivors to help us get through each health event, and also to be a shoulder when we say goodbye to another.  As time goes on, this happens a lot.  And it does not get easier, because we grow so close to each other.

And so, I light another candle today, for another Hodgkin’s survivor.  You will be missed.

Hair Today, Gone Tomorrow

Though I am running posts pertaining to my 30th anniversary battling Hodgkin’s Lymphoma, this post is about how the one seemingly minor side effect to others, can still have a major emotional impact decades later.

Samson.  A biblical character of superhuman strength, comparable to that of Hercules and Superman (though I prefer the Incredible Hulk, for the purposes of this post, I need to use Clark Kent).  This strength would enable him to fight off his enemies.  However, like all superheroes, they have a weakness.  Superman had kryptonite.  Samson’s weakness?  His hair.  That is right, his long locks were the difference to fighting off beasts and armies.  Betrayed by his lover, Delilah, she had a servant cut off his hair while he slept, and yep, he lost his powerful strength, was captured by his enemies, and tortured.

For most of my life, I have enjoyed long hair, normally around collar length.  It was just a preference.  This is the last known photo of me prior to me beginning chemotherapy for Hodgkin’s Lymphoma.  I can tell because of my “thinned” beard, caused by radiation I had prior.

Cancer patients are normally given a list of side effects that can be expected as they begin treatments.  Normally, those are the short term side effects, as back in the 20th century, long term side effects were not really studied because, well, we were not expected to live decades after our battles.  But we do.

Of all the side short term side effects, nausea, pain, sleeplessness, fatigue, even fertility, hair loss is the most difficult for most, women and men, to deal with and accept.  There are so many emotions that we experience once we begin to lose our hair, if it happens.  (It should be noted, not all chemotherapy will cause hair loss)

I had asked my doctor if I should just go ahead and shave it all off, to mentally prepare myself for the next eight months to a year.  He told me it was up to me.  I could not bring myself to do it.  So instead, I just got my hair cut short, to adjust to the new look that was coming.

A few weeks after that first treatment, and it literally happened all of a sudden, clumps of hair.  On my pillow.  In the shower.  I am one of the lucky ones, a very full thick head of hair (not to be confused with having a thick head which I also have).  I did not lose all of my hair, but enough to be noticed.  To be stared at.  People would now know something was wrong with me.  Like Samson, the loss of my hair, affected me as well.

With this hair loss occurring during the winter, I also got a rude awakening with the first snowfall.  I did not make a habit of wearing hats, but all it took was the first snowflake, painfully hitting an exposed part of my scalp, and you bet I wore a ski cap from then on, not just for snow, but for rain as well.  Honestly, I have no idea how my follically challenged friends deal with precipitation.

But unlike the hair loss from radiation therapy, hair continuously grows, even as the chemotherapy kills the older hair cells.  So, even as you lose hair, new hair grows.  And of course, once treatment ends, you end up with as much hair, normally, as what you started with.

And so, I let my hair grow, and grow, and grow.  Yes, I wanted it back to the length it once was.  But I had another reason for doing it.

As you can see, the lasting effect from my radiation therapy, I have this “skunk tail” of hair that I call it.  Radiation destroyed the hair on the left and right side of my spine, which was protected from the treatments.  With a shorter hair style, this area would be constantly exposed.  Admittedly, as I am always assured, you will not notice it.  But I know it is there.  It was hard enough for those two years, being looked at uncomfortably because fate dealt me a cruel card.  For me to move on, I needed to cover up all evidence of what I went through.  Sure, I could talk about my experience, and all people would notice was the happy ending, a return to being normal.  I would be accepted again by everyone because of who I was, not what I had become.

Legend has it that Samson’s hair grew back, and his strength returned.  He had defeated his enemies who had tortured him in his weakened state.  He was once again, Samson.

I have kept my hair a long length since the end of my treatments for most of my survivorhood with the exception briefly during my second marriage.  I went through various phases with styles, ashamed to say including the mullet phase.  But up until a couple of days ago, this was basically what I looked like, except the hair was about 3 inches longer.  As I said, I have a very full and thick head of hair.  Also I will point out, no coloring.  It is not needed as I have very little grey that I accept.

That all changed two days ago, in a very harsh and unexpected way.  I do not get many haircuts in a year, sometimes as few as three.  And the reason is still the same, the bald patch on the back of my skull.

You see, in my survivorship, I deal with a lot of serious health issues as a result of my treatments.  What you see looking at me, is a shell.  It is what I want you to see.  I am protecting you.  I am protecting me.  That is what a shell does.  If my hair looks normal, you will not suspect anything is wrong with me.  The average person could not handle discovering everything that many of us long term survivors have to live with as far as the health complications we have.  Of course, the downside to that, is if you do not know something is wrong with me, then you might expect more of me than I am capable of at that moment, and get frustrated with me.  And I do not want that either.

To make sure I kept my hair consistent, just like I expect of my care with my doctors, I saw the same stylist who was aware of what had happened to me, and would be sensitive, careful, and skilled, to help pattern and maintain my hair.  For the most part, that is how it went.  The last five years, it has been that way.

I am not sure what happened this last time, but it went horribly wrong.  The instructions were simple, as always, “to the collar, and then shape and layer the rest.”  The chair I sat in was turned away from the mirror, and in spite of the amount of hair on the floor, which was a lot, I was not concerned because I expected to lost about 4 inches of growth, still leaving me with a length to my collar.

What I ended up with was a cross between Moe Howard of the 3 stooges, and Korean dictator Kim Jong Un.  Not an exaggeration either.  There are no pictures of this, as I once again, felt like I did thirty years ago.  Not every hair cut I have had has been perfect, but this took me back to the worst my hair had ever been, the end of my chemotherapy.  Once again, I lost who I was.  Worse, that bald patch was exposed again.  One of the issues I deal with in my survivorship, is PTSD.  Flashback and recollections of traumatic time periods or events are symptoms of PTSD.  And this triggered me as soon as I realized what had been done.

Unless you have experienced this type of trauma before, you cannot understand its impact.  This is different than those who baldness, or even short styles occur naturally (by the way, you all carry those styles perfectly).  My mind immediately took me back thirty years ago, remembering all too well everything I had gone through.  The struggle to accept “it will grow back” while looking at the result was the same as years ago.  Sure, it will grow back.  Samson returned to normal.  And even I had a “normal” with my hair that had grown.

I actually lost all my sleep that evening from the thoughts going through my mind.  I was beyond what the stylist did.  I was only concerned with what I had become, even at times forgetting that I was not dealing with the cancer any more.  That was how real this felt.

As I started the next day, on my way home from cardiac therapy, I made an impulsive decision to get my hair dilemma straightened out.  I could not get through the next month and a half wearing a hat like I had done before.  This new stylist was quite shocked at what she was looking at, the hair, not me.  Just like my doctors, I explained my history so that she could understand not only what I deal with, but that it is important to me.

I am not crazy about the length at all.  But what she was able to do, was correct it enough, very similar to my first cut I got after my chemo to begin to shape how it would grow back.

The obvious, I am obviously the same person, the same shell.  And it really has nothing to do with vanity or super powers.  I write the same.  I enjoy all the same things.  But surviving cancer is not just a physical thing, but emotional as well.  I can live with this new look, again, for now.  I have no choice.

And while those around me often suggested that I “needed a haircut”, they now see it was not such a simple thing for me to do.  It will grow back, and my shell will be restored again.

There Will Never Be Another

If you have ever owned a pet before, then I am sure that you will echo this statement, “the best ever,” in describing your fur family member.  And there is no doubt in my proclamation for my friend that is shown above.  A great family friend to both of my daughters, and just so lovable to anyone who wanted to pet him.  He was described by many as “they happy golden” because of his constant smile and wagging tail.

Like many, I am a sucker when it comes to animal movies, especially when they involve dogs.  Growing up, we had Old Yeller, Benji, Cujo, okay, maybe that last one was not meant for the kids.  But in the last few years, we were hit with several tearjerkers about the joys and sorrows of sharing your life with a fur friend.

And that is exactly the order that I watched them.  A Dog’s Purpose.  The Art Of Racing In The Rain.  A Dog’s Journey.

A Dog’s Purpose dealt with the hopes that maybe we might be reunited with our fur friend, long before meeting at the Rainbow Bridge (also known as Heaven).  The dog, nicknamed “boss dog,” goes through various reincarnations all with the hopes of being reunited with his original owner.  The catch?  His owner thinks that he will never see his friend again.  What an awesome thought.

I said goodbye to my best friend nearly six years ago.  He lived nearly 15 years, almost unheard of for a golden retriever.  But as I said, his nickname was “the happy golden,” and allowing him to be “just a dog” gave me the best decade and a half of my life second to my daughters being adopted.  I have so many memories with him.  In the end, he let me know it was time.

But in A Dog’s Purpose, how would “boss dog” get his original owner to recognize him, especially if he came back as a different animal, breed, or even gender?  I have found myself wondering that exact thing.  Just as in the movie, there was just something about the dog, in his fourth or fifth reincarnation, I honestly forget, something that would make his original human family, realize it was actually him.  Could Pollo do that to me as well?  What were some of the things that he did, that no matter who he would come back as, would be the sign, that it was definitely him?

A Dog’s Journey was a continuation of the story, but now “boss dog’s” purpose was a bit different.  Sorry, no spoiler alert, but the ending could not have been more perfect.  Yes, I do hope I do not have to wait until that day at the Rainbow Bridge to be reunited with him.

Then came The Art Of Racing in The Rain.  While the other two movies gave me hopes that some day I would see my fur friend again, The Art gave me a whole appreciation for the relationship that I had with him while he was alive.  Again, I will not give anything away about the movie, perhaps the best “dog” movie I have seen.  But the dog, narrating the movie with Kevin Costner’s gruff voice was perfect, gave the dog a human quality about him throughout the movie.  The pooch had feelings, concern, empathy, all the feelings that we have as humans.  And just as we have these emotions for each other as humans, to see it portrayed through a dog made me look back at my own life with Pollo.

I could narrate Pollo’s life story from puppy to the end.  From his first swim to the infamous “humpy bear”, a stuffed toy that was the only thing he would hump, thankfully.  But just as my daughters, Pollo witnessed many of the difficult times in my life.  And if Pollo would narrate his story, along with all the trips we took, walks we enjoyed, and bringing in two small humans into his life, he would also be able to express what he was thinking and feeling when it came to emergencies with me.

In 2008, I had to have emergency open heart surgery for a quickly approaching fatal condition.  Pollo and I had never been apart from each other, but I spent nearly a week recovering from the surgery.  One of my biggest fears, was that I would walk through my front door, and get the normal excited jump and pounce greeting from my 105 pound golden.  Instead, while his tail was wagging, and he had his patented smile, he stayed on all fours and just approached my side, leaning up against me.  For the next several days, he would spend his time either laying next me while I sat on the couch, or his favorite position, sitting in front of me, with his head resting on my knee, staring at me.  Looking back, I wonder what he could have been thinking.  According to the movie, he certainly could have been.

In 2012, I was rolled out of my home, in the early hours of the morning, on an ambulance stretcher, again, with another fatal possible situation.  There was another couple days away from Pollo in the hospital, and as he was now approximately thirteen, unable to jump himself, but the tail and his smile was there when I came in through the door.  What could have been going through that night I was taken out of the house?  Or when I came back.  There should be an answer according to the movie.

But in the Fall of 2013, Pollo let me know it was time.  It was something that I had asked him to do.  I was too selfish to let him go.  And as long as his tail wagged, and he had his smile, I was not letting him go.  It was definitely one of the harder moments of my life.  And though my daughters constantly let me know that I need to have another dog, some day, I have told them that I am not sure how.  If I were, I would need to make sure it was not going to be subject to be compared to Pollo.  It was going to be its own being.  But if I believe in A Dog’s Purpose, would it be its own?  What if it could be Pollo coming back to me?  How would I know?  How would I even have the chance, if I do not take that chance?

Until that time comes, if it comes, I have so many memories, photos, stories of my friend.  And as long as Hollywood keeps coming out with movies about dogs and giving them the human qualities like my fur friend had, who knows?

I still miss you my friend.

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