Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “February, 2019”

Not As Bad As It Looks

Continuing on with my “30th Anniversary” series posts… at this point, I was nearly 75% of the way through my radiation treatments.  I had blood work done every Monday morning to see if my body was going to be able to tolerate the full dose of radiation treatment.  And to this point, I had been able to do just that.

I started each day the same, going to the radiation suite at 7:30 am, get my minute dose of treatment, making it to work by 8 am.  Physically, the only noticeable thing you could tell about me was that my neck area had begun to develop a skin burn, much like a sunburn.

At this point, internally, I had done as advised, avoiding acidic foods like tomato products and citrus foods.  Because what looked bad on the outside, was nothing compared to what was cooking on the inside.

More importantly, I just kept going day to day, not missing a beat at work, and especially my physical appearance still looked “normal.”  With my wedding just months away, clearly I had made the right decision.

But as the days went on, the skin burn got much worse.

This is not an actually picture of my irradiated area.  But you can imagine, from my jawline, to the balls of my shoulder joints, to the middle of my abdomen, this is what my skin had begun to look like.  Only now the skin was becoming dry and brittle.  I was not allowed to use any kind of skin lotion because most contained alcohol, which of course would cause more dryness.  Instead, I had to use vasoline, and because of its greasiness, ruined a lot of clothing.

Keeping my eyes on the prize, and side effects to a minimum both physically and mentally, I made it to treatment number 30.  Blood work remained strong.  And a scan would show my Hodgkin’s was no in remission.  I could get married without any worries, go on my honeymoon (we altered our plans because we originally planned a Carribean trip, but with all this radiation, felt it was not wise to get more sun), and the doctor would follow up with me upon my return.

It was time to get my life back on track.

No Mistaking Me For The Hulk

As I continue down the path of celebrating 30 years being cancer free from my Hodgkin’s Lymphoma, February marks 30 years that I underwent my option of choosing radiation therapy to be my cure.

I have to admit, I made the decision based solely on stereotypes and what I thought would be common sense.  At this point, my cancer was staged to allow me to make the choice between radiation or chemotherapy.  Well, chemotherapy I knew would be tough, because that is all you ever saw publicly.  I had a wedding coming up in less than 4 months, and the last thing I wanted to look like, was someone so decimated and sick on my wedding day.  Yes, men can feel this way about their appearance too.  And radiation?  Well, really, as I understood it, was only going to last around a minute a day, for 30 days.  In my mind, just like going through an X-ray.  Easily done, and would not be visible when I got married.

I may have been told a lot of information about what would happen, but to be quite honest, I know I did not hear what I now know about radiation.  Sure, it is very successful at treating Hodgkin’s.  But I was never told about the dosage or the late side effects.  The only thing I was told initially, is that there would be eventual skin burning (like a second degree sunburn), and a chance at developing a secondary cancer (like skin cancer), and an increase chance of pericarditis (enlarged heart).

So, all that was to be done, was “mark me up” with tattoos, actually just 4 dots placed in a cross-hair pattern, at the base of my neck, middle of my abdomen, and on both balls of my shoulders.  This was important to line up the linear accelerator over the same location for all 30 treatments.

Unlike today, where radiation is beamed direct and targeted, back in the 1980’s were we treated “scattered field”, which meant that the radiation would scatter beyond the targeted area.  For this reason, all efforts were made to protect my spine and my heart with the use of lead blocks.  But remember, this was going to be scattered field, and only currently do I realize, the lead blocks really only gave direct impact protection, but not protection from the scattered results.

As I lay on the table for my first treatment, there is an issue with the linear accelerator.  I am asked to get off the table, while the correct the problem.  I think, “thank God.”  But seriously, what if something went wrong, would life imitate art?

The treatment eventually began.  I went Monday through Friday, for six weeks.  Receiving all of my treatments.  I started each day this way, early, which enabled me to not miss any work.  While my skin did begin to burn as predicted, and there was some issue with swallowing from the same issue, I did not get sick.  The treatments would be done, a scan would hopefully predict the radiation did its job, and I could get back on track planning my wedding.  Be done with Hodgkin’s forever.

Radiation changed a lot from the days of using cobalt.

And just as there has been progress from the early days to the 80’s, so much progress has been made in learning that “using less” is actually better, and still as successful.  I will admit that I am not current on just how much radiation is used today, but I know it is considerably less, and instead of “scattered”, focused directly at only the cancer, preventing damage to surrounding organs and tissue, meaning less risks.

Let me put it to you this way, according to Stanford University, my treatment (not known back then) produced the possibility of dying by an increase of 50% because I discovered in recent years, my dosage was 4000 rads.  Today’s patients receive a dosage most likely less than 500 rads, or even lower.  How powerful is radiation?  Even workers at nuclear power plants are not to be exposed to more than 100 rads.

Serious stuff.  But you know what?  It works.  And I am here, approaching 30 years of survivorship.

Have You Had A Stroke And Never Knew It

The timing of treating someone who has suffered a stroke is critical.  Treatment must be started immediately.  But what happens if you do not recognize that the person, or yourself, is having a stroke.

F.A.S.T. has become the easiest method to help recognize a stroke.  F = face drooping, A = arm weakness, S = speech difficulty or slurring, T = time to call 911.  Yes, memorizing FAST can make a difference.  And even a newer expression has come out.

B.E.F.A.S.T.  By adding B = balance, and E = eyes, BE FAST in recognizing the stroke.

But can you have a stroke and not show these symptoms?  Absolutely.

My father had been in the hospital to have a lobectomy (remove part of his lung due to lung cancer).  The surgeon had come up to talk to me following the surgery, as my father lay in recovery, and mentioned that my father was having a longer time coming out of the anesthesia.  This did not seem a concern, since my Dad was in his late 60’s.  He also liked to sleep.  And I am sure there was going to be quite a bit of pain to deal with.  What could be the harm?

He did seem a bit confused at first upon coming to, but we attributed that to the anesthesia and pain medications.  But in the next day or so, we could no longer blame the confusion on medications.

I received a call from my brother that my father was looking for his glasses.  I mentioned they were in a drawer and asked why he needed them.  My brother said that he could not see without them.  He was looking for his cup of coffee and could not see it to pick it up (which happened to be right in front of him on his tray).  While my father did wear glasses, he did not always use them.  He was not completely without clear vision.  He often did things without wearing his glasses.

As I arrived at the hospital, I had just missed an array of physicians who had been looking at my father, including a neurologist.  I do not know why a neurologist was there, I expected the oncologist, the surgeon, maybe the resident, but not a neurologist.  Everything was going well with my dad’s recovery.  Well, except for his eating.

While I normally follow rules, I was concerned because my dad was not eating right.  I stopped by the cafeteria to get him some more tasty foods instead of what he was being served.  I purchased mozzarella sticks which I knew he liked.  Surely he would eat them.

I asked if he had his dentures in his mouth, so that he could eat, and he had said yes.  But as I could see from the sunkenness of his jawline, he did not have them in.  I asked him where his cup with the false teeth were, and he proceeded to argue with me, quite clearly that he had them in his mouth.  He then proceeded to open his mouth, and with his thumb and pointer finger, attempted to pull out his dentures.  Only one problem, they were not in his mouth.  And he kept trying to pull what was not there out.

Quickly I found the cup, opened it for him, and he shrugged his shoulders, and placed the dentures in his mouth.  Now I was getting confused.  He seriously thought he had his false teeth in his mouth.  And not only surprised to see the cup in my hand, but never giving a second thought to the argument he just had with me.

I gave my dad the mozzarella sticks.  He took one, bit into it…

“How did they make these so soft?  They are really good this way.”

“Dad, they are mozzarella sticks, they are soft.”

And then I heard all I needed…

“No.  They are carrot sticks.”

My father had a sense of humor, but not when it came to messing around like that.  He was not a practical joker.

“No Dad.  They are mozzarella sticks.”

“Really, because they taste like carrots.”

I looked to my brother and told him to get the nurse right away.  Something was wrong.

When the nurse came in, I explained to her what had happened.  I stressed this was not normal behavior for my dad.  She called the neurologist back into the room.  I explained what just happened to him, and his response was that he had just seen my father and felt he was fine.  Talked clearly, showed no signs of anything wrong.  And then he grabbed a piece of paper and a pen.  He placed it in front of my father.

“Mr. Edelman, I would like you to draw a vertical line through every horizontal line.”

My father thought it was foolish, but proceeded anyway.  He put the pen down, and the neurologist then asked my dad if he was finished.  My father answer yes.  The neurologist asked, “are you sure?” and proceeded to shift the paper to the right, about 3 inches.  At this point, my father realized that he had left the 3 columns on the left uncrossed.  Puzzled himself, my father then put vertical lines through the rest of the horizontal lines.

Then, the neurologist had my father get out of the bed, something he had not done yet, and in just the few steps my father took, you could see the lean towards one direction, the only direction he could so, to the right.

A head scan would reveal my father suffered two major strokes, most likely during surgery or recovery.  He did not show the signs of “FAST”, and just by conversation, the neurologist did not notice anything.  But were it not for the fact of the noticeable change in behavior, something so obvious, we would never have discovered my father had had these strokes.  Sure, two days had passed, but with medication, he would eventually recover from the strokes, to be able to deal with his cancer.

BEFAST when it comes to noticing a stroke, but also, pay attention to behavior.  The test given to my father which revealed the possibility of a stroke is far from scientific, but my father’s inability to see from the left side was all that was necessary to hint at the stroke.  And we went from there.

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