Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

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.

Save A Life – Share This Post!!!!


These are copies of a laminated card I carry in my wallet, and reflects the warning on my med-alert bracelet.  I am asplenic, in simple words, I have no spleen.  Like many others, and for any reason besides cancer, a person could be left without a spleen.  And if that is the case, that means that you are at an increased risk for infections and illnesses, including developing a fatal condition related to sepsis, which I have dealt with twice.  And were it not for this card, and the quick thinking of my doctors, I may not be here today.

I am a member on many pages related to Hodgkin’s Lymphoma, but as I stated, being asplenic is not just related to cancer.  Trauma such as a car accident, another illness, could result in the loss of your spleen.  And the chances are, that you know at least one person in your life, without a spleen.  And if you do, this information will help to save their life.

I received this information over ten years ago, when I met the doctor who is dealing with all the late side effects from my cancer treatments.  This information is given out by the survivorship clinic at Memorial Sloan Kettering Cancer Center, so this is information that is very important, and proven.

Please share this post, encourage the printing of this card, or even typing it yourself, but keep it.  If you end up with a fever over 101 degrees, get to the emergency room.  They need to check your lactic levels which will either confirm or deny sepsis.  With sepsis, it is a matter of hours of saving your life.  The more knowledge and tools you have, the better chance you have.

Over the last decade, I have known too many who have died from sepsis.  Patty Duke, former child TV star, died from sepsis.  The attention to sepsis lasted only days, yet every day, so many patients face sepsis, and unknowingly, pass away with the cause not determined, likely to have been sepsis.

Timing is important.  Share this post.  If you know someone without a spleen, give them this information.  They will be glad you did.

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