Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “October, 2019”

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.

Chemo – Day One, Part 2

The following is a continuation of my series, recognizing my 30th year as a Hodgkin’s Lymphoma Survivor.  This post subject matter includes dealing with nausea, something that we had no help with thirty years ago.  Whereas today, nausea is often no longer an issue because of how it is controlled.

With the IV placed into my arm, quite easily I might add, Brenda, my chemotherapy nurse would now turn her attention to the tray to my right.  There were many syringes on this tray, some filled with saline to help “flush” the line feeding my veins, four other syringes filled with the half of the treatment cocktail, that would hopefully save my life.

Before I go further, I want to recognize the oncology nurse.  I wrote in an earlier post, about the lack of empathy from my former oncologist, and the excuse being given to me, “how much ‘death’ he has to deal with each patient, along with his other patients.”  Brenda, as do every other oncology nurse, was going to be spending the next several hours with me, knowingly injecting toxic medications into my veins, over a period of months.  During all of my treatments, Brenda and I would have many discussions, some cancer related, some general conversations, and others directed toward emotions.  Looking back, I have so much respect for Brenda and all of the other oncology nurses, because it is they who deal with the every day events of the patients.  They are the ones that put their emotions at risk, exposing themselves to feelings and concerns.  They are the ones who really deal with both the successes and losses of a cancer patient.

I could see the expression on Brenda’s face.  My case was too close to home for her, as she had a son around my age.  While I never had any doubt that she would give me the best care she could, her mentioning her son to me, as well as the teariness in her eyes, I knew she was going to take really good care of me.

To be honest, I do not recall the order of the drugs given to me.  And the only thing I recall is that I knew she had to take care with one of the drugs as far as delivery, slow enough not to blow out the vein.  Though I had my headphones one, I would turn the volume down to allow me to hear what the next instructions would be.

The first drug injected into me, was horrific.  Not from a pain standpoint, but it was a drug that I could taste, and from my veins that made no sense to me.  It was a metallic taste, and it was nauseating.  One side note, we did not get any kind of medicine to help with nausea back in 1989.  I was about to be dealing with the one side effect I had seen played out on TV and movie screens.   Brenda could tell I was uncomfortable with that particular infusion, and assured me that it would not last after it was finished.

At that point, I just came right out and asked, “so how much time will I have before I puke my guts up?”

She told me that I should expect to make it home in time following the end of the treatment.  Though after how that drug made me feel, I was not too sure.  I had a “barf” bag on me, just in case.

I turned my music back up, and put myself mentally into a place, where I could use that imaging technique, to actually picture the chemotherapy, attacking the cancer cells.  Stunning them, knocking them silly, as the next drug to be delivered would be another solid jab to my cancer.  I would not taste this drug, but I was warned by Brenda, that it would like make me pee “red.”  Not to confuse it with blood.

Again, I turned the music louder, this time, wanting to drown out any more directions from Brenda.  Because each time she wanted to talk to me, she took me from the “place” that I needed to be, to tolerate what was happening.  I would get through the remaining two infusions without even realizing it.  Three and half hours after I arrived, I was finished with my first treatment.

I lived only twenty minutes from the oncology office, without any traffic.  So far, I was not feeling any wave of nausea that I had been dreading.  It was going to happen.  I made it home, and climbed three flights of stairs to my apartment, now fumbling for my key to the door.  “It” was coming!  And fast!  I finally got the key into the lock, turned it, opened the door.  I tore off my jacket, dropping it onto the floor, and raced toward the bathroom, just fifteen feet away, down the hall from the door.

And that is where I would be for the next half hour.  It had been just as I had viewed in the movies and on the television.  Once everything had been brought up, my body still felt the need to vomit, but it could not.  That did not stop it from trying, which is called dry heaving.  I was exhausted.  My stomach muscles felt as if I had done 10,000 situps.

As I lifted my head up, reached for a hand towel above to clean myself up, I saw a figure out of the corner of my my left eye.

It was my cat, Pebbles.  She was adopted back before I went through my radiation therapy.  Apartment regulations would not allow a dog, which is what I really wanted.  But, they did allow cats.  Because of my belief in the power of “pet therapy,” and its relation to healing, Pebbles would eventually be described as my chemo cat because of the care she would give me, once I got done in the bathroom.

I honestly believe animals know when we are not feeling well.  And she really did look confused as to the way I was using the toilet.  But as I stood up, washed up, I then made my way to my bedroom, totally worn out.  I climbed into my bed, fully clothed but now shivering, either from being cold, or from feeling so weak from what I just experienced.  Pebbles jumped up on the bed with me, and laid down on top of the pillow next to me, my wife’s pillow, until she would come home from work.  Strange as it may seem, it made me feel safe, that someone was watching over me.

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