Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “radiation therapy”

A Carnival Of Cancers


I would like to dedicate this story to two young people that I talk to about their cancers.  One has just celebrated one year of remission, the other, is approximately a month away from completing his journey.  Both have faced their Hodgkin’s.  One has beaten it, the other is almost there.  I am happy for both of you.  Your experiences during your fight with Hodgkin’s that you have shared with me, are truly an inspiration.  The support that you had from your families, should serve as the example of the support that all patients need to get through their fight with cancer. 

Whether visiting the boardwalks of the shorelines, or local carnivals, it is not uncommon to hear some barker call out to passer-byes to step right up, and win a prize.  While the games are fairly easy to win, the prizes are awarded by some ladder scale from small to largest, and when played long enough to get the larger prizes, come with quite a price.

But imagine if the dialogue went something like this:

“Step right up, come on over, give it a shot, it’s real easy.  Everybody gets it.  Is it going to be small or large?  How lucky you feeling?  And we have a winner!  It’s cancer, but not just any cancer.  Hodgkin’s Lymphoma folks.  He’s got Hodgkin’s Lymphoma!  Who’s next to test their luck?”

Of course this is a ridiculous premise, but I challenge you to find one person, who did not hear these words from an oncologist, “You are really lucky.  If you are going to get a cancer, Hodgkin’s Lymphoma is the cancer to have.”  I will let the doctor off the hook in a second, but for now, imagine, you have just been told you are lucky and that you have cancer.  What would your reaction be?  You have a deadly disease, remission or cure is not certain, but for you, the news is good.

For myself, I was in an office of an oncologist / hematologist.  I had no idea what that even meant.  All of the prior doctors that I had seen had been looking for some sort of cold, or perhaps an injury when one of them decided to send me to this place.  I was not even placed in an exam room, but rather the office of the doctor.  He walked in to the office, around his desk, sat in his chair, and then rattled off an obviously often rehearsed speech.  I have no idea how, but with just the first two words from his mouth, “Hodgkin’s Lymphoma…”, it triggered an automatic response of something I should never have known what it meant.  By the time he finished that first sentence, ending in “rare form of cancer.”, I had already guessed that is what he was already talking about.  Then I heard the word from him, “cancer.”  I knew I was in the wrong place, the wrong patient, the wrong diagnosis.  But he kept on talking.

“Hodgkin’s is rare, but it is also highly curable, at 85%, if you are going to get a cancer, Hodgkin’s is the cancer you want to get.”  I “want to get?!?!”  Seriously?  I wanted to get cancer, so I pressed my luck and came up with Hodgkin’s?  People die from cancer, and he is telling me that I am lucky?  Pardon me, but are fucking kidding me?!?!  I did not want cancer!  Let me be clear, I did not want it.  I did not wake up that morning, and make a choice between buying a lottery ticket or getting Hodgkin’s.  Clearly, winning the lottery, that would have required luck.  Cancer kills.  How is that lucky.

Now as promised, I have to cut the doctor some slack, but hopefully those who are reading this, and have been in this situation, not just with cancer, but any serious crisis, print this, and give this to the doctor to read.  Like I said, I am not going to hammer the doctor.  Let’s face it, next to a cardiologist, the oncologist has to deal with one of the most grim disciplines of medicine.  And if they have been practicing long enough, the tended to plenty of patients, whose prognosis were definitely more grim than today.  So there may be an oncologist who may not have the best or happiest bedside manner.  But hopefully we can get it across, by passing this on, there is no such thing as luck with developing a certain cancer, or how advanced a cancer is compared to another.

I would rather have had the doctor say, “I am sorry to tell you, that you have cancer.  Here are the statistics, and here are the modes of treatments used to treat it.  I am going to do everything I can to put your cancer into remission.”  It is that simple.

I was not lucky.  I was diagnosed with cancer.  I was treated with chemicals and radiation that were toxic and difficult to go through.  I was left with some permanent after effects from those treatments, some serious, some not so much.  The last thing I consider myself today is lucky.  But what did happen?  I tolerated the treatments.  My body endured.  My physiology was able to handle the all-out assault of the chemotherapy and radiation therapy.  This was not luck either.  My body did what it had to.  The treatments did what they had to.

Please, do not get me wrong.  It is no minor accomplishment that I am here twenty three years later.  I often wonder how the other three kids who were treated with me turned out.  Progress in the diagnostic techniques and treatments of not just Hodgkin’s Lymphoma, but many cancers has advanced so far in the last two decades, and from the times before I was treated.  Survival rates for Hodgkin’s has increased from 85% to 95%.  And there are many cancers that have achieved 100% remission or cure.  In spite of the positive direction that cancer research has taken in two decades, I know better than to tell the many newly diagnosed patients or those currently in treatment that they are “lucky that they did not have to go through what I did, or those before me.”  Patients today are still being diagnosed with a deadly disease, high cure rate or not.  We are not lucky.  We simply hope that we have made the right decisions in the doctor, the treatments, and have the right support team with us.  this is not luck.  We simply count on everything to go as the books say to do.

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My First Tatoos


If you read my page “U. R. Sharpe,” I think I have made it perfectly clear where I stand with needles.  Only during chemotherapy, could I get passed the anxiety of the of five to seven attempts of hitting the first vein seen.  But once the chemo was done, I went right back to my phobia.

Up until my 23rd birthday, my skin surface had remained unblemished from tattoos.    But with the amount of radiation I was going to receive, every detail needed to be exact, spot on, or risk of spreading the radiation to areas not meant.

Before radiation therapy could begin, the linear accelerator would need to be lined up the same way for every treatment,  The cross bar on my chest would have to be lined up perfectly.  The only way to assure that, was to place a dot at the nape of my neck, a dot on each the balls of the shoulders, and the final down in the middle of the abdomen.  Surprisingly, this did not hurt.  The needle is so small, and the process was so quick, just a small dot, which I still have today.  So there is now a constellation on my upper body in the form of a cross.

Years would go by, and the only times that you would hear me talk about needles, was going for blood tests or procedures that required anesthesia.  But following a family vacation many years ago, both my father-in-law and brother-in-law each came home with tatoo.  My father-in-law had a Porsche tatooed on his leg, my brother-in-law, the Harley Davidson insignia across his shoulders.  The artwork was very nice, though I wondered what the motive might have been for a 70 year old, and a major upper manager for a world-wide company.

It was the next year, they went on vacation again, and came home with yet another tatoo.  This time, my father-in-law with the symbol for The Saint (a television show in the 60’s) and my brother-in-law, a number 4 inside of a baseball in tribute to Lou Gerhrig.  Earlier that summer, my brother-in-law had been diagnosed with Lou Gerhrig’s Disease (ALS).  He was only a couple of years older than I, and now we both faced an uncertain fate.  He was looking at a very grim future with a disease that would leave him unable to physically function at all, or communicate.  His mind would work 100% as it always had, the cruelest thing about that disease.

Myself, I was still coming to terms with learning about the world of late effects from cancer treatments, and how all of a sudden, some of these issues could pop up, but also how some could take time to develop.

Finally, it happened.  I got why Mike had started getting the tatoos, and now I wanted to get one as well.  For me, it was going to be once and done.  I just wanted one tatoo, and of course, it would probably be the most expensive, most time consuming, but clearly the most beautiful tribute I could ever give my daughters.  It would take up at least 1/3 of my upper left back/shoulder.

A couple of years prior, while on a family vacation for our wedding anniversary, my wife had stepped aside to do some shopping, something my children and I try to avoid at all costs.  An opportunity came up, to have my daughter’s photos taken without my wife knowing.  I say it like that, because when it comes to posing the girls, it is probably one of the more stressful times for our daughters.  But with me, I like a natural photo.  And I was able to pull it off with our daughters.  I simply told the photographer what I was going to do, and he had literally two seconds to do it.  I did not care about shadows or lighting, I wanted the pose.

painting

I had this picture made into an oil painting which now hangs above our mantle.  Now if I can just tolerate a few more needles, they will be immortalized forever.  This will be my first “artistic” and meaningful tatoo.

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