Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “October 11, 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.

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