Paul's Heart

Life As A Dad, And A Survivor

Dangerous Comments

***I want to state, the following is not a political rebuke against the President of The United States, but rather an explanation, given the current health crisis that our country is going through, the importance of letting scientists do their jobs, and not mislead or suggest unproven or ideas not even conceived, yet intended for as close to as immediate as possible usage.

On Thursday, April 23, 2020, the President made a clear statement to a representative of the health department, to investigate the possibility of looking into “digesting” or “injecting” disinfectants into humans as a possible treatment (just as he pushed for the use of prescriptions used for Malaria and Lupus), and also the use of ultraviolet radiation for use outside and inside the body.  This is not up for debate.  He made the statements, nothing was taken out of context, nothing was sarcastic.

I am not going to comment on the ludicrousness of the idea of treating humans with disinfectants as this issue was addressed when we were children, and as I taught my children when they were three years old… it kills.  Instead, I am going to concentrate on the use of the ultraviolet radiation concept.  While acknowledging there could be a potential possibility, the current crisis does not provide time for research, my personal story is why.

The pictures that are posted above, are taken from my now thirty-one year old medical file for my Hodgkin’s Lymphoma.  I am sharing these for one reason and one reason only.  So you can understand, just how dangerous, an unresearched treatment can be.

For decades, going back even before the 1960’s, radiation therapy was a commonly used treatment for Hodgkin’s Lymphoma.  It led to a high remission rate as far as cancers go.  There were short term side effects from skin burning to sore throats, and other issues.  But something was missing from the research.

As decades went by, so did the modes and methods of delivering the radiation change, or loosely put, improved, still producing similar successful results, but still with the extreme immediate side effects.  But again, information was still missing.

So, in the Winter of 1989, when I made the decision to treat my Hodkgin’s Lymphoma with radiation, a machine called a linear accelerator was going to be used to deliver the treatments, thirty over six weeks.  If you look at the first picture, you will see short term side effects listed, which were pretty much accurate.  But in the circled area, are what is called the “long term side effects”, or potential for.  Bone and muscle issues were a possibility, but so was something called “pericarditis”, an inflammation of the lining around the heart.  That was all that was listed.  Likely, that was all that was researched.

The next photo, in the circled area, shows the dose that I received, 4050 rads.  Next time you get the chance to ask anyone involved in x-rays or radiation, how bad 4050 rads are for a human being.  I actually watched a friend who worked at a nuclear power plant break down in tears when I answered his question about my radiation.  The other pictures are actual polaroids taken preparing me for my treatments.

Nearly eighteen years after my radiation treatment ended, my chemo ending a year later, I found myself in an operating room having emergency bypass surgery for a “widow maker” heart blockage.  The cause?  Radiation damage.  Go back again, and look at that first picture.  Do you see that anywhere?  Of course not.  Because long term side effects were not researched beyond even five years.  Had it not been for a flukey feeling, I would have died.  My cardiologist guaranteed it.

Following the recovery from the surgery, I was seen at a “survivorship clinic” at Memorial Sloan Kettering Cancer Center in Manhattan.  A doctor there had been studying late effects from treatments for Hodgkin’s Lymphoma for a long time, but not something that was mainstream.  After my first few appointments, the following damage was diagnosed and determined to be caused by the radiation therapy in addition to the bypass:

  • heart valve damage
  • other blood vessels needing repair or bypass
  • carotid artery damage (both affected)
  • muscle loss in the back of my neck and shoulder area, causing my head to drop forward
  • both my shoulders pull forward on their own from the muscle loss
  • upper torso pain as well as spine issues
  • Barrett’s Esophagus (a precursor to esophageal cancer), as well as other issues within my digestive system
  • a 76% lung capacity (the lower left lobe is considered “dead”)
  • restrictive lung disease
  • several unidentified spots on both lungs, being observed and monitored for development, possibly into lung cancer

Again, go back to that first picture.  Think medicine missed the call?  Research was not done back when I was treated.  I opted for radiation because I felt chemotherapy would have been more difficult to go through, not knowing what would affect me later in life, because medicine had not researched it.

Today, medicine knows.  Radiation therapy has been researched properly.  Follow up protocols have been established because besides developing late side effects, it has been discovered, us Hodgkin’s patients can live a long time, a long time for these effects to develop.  Scientists have learned that more can be done with less and concentrated beams of radiation, resulting in less damage.

But knowing what I know now, would that have changed my mind to what I decided back then?  I honestly cannot answer.  I was scared shitless of chemotherapy.  But my point is, I have to let medicine do their jobs.  They are the ones researching the cures.

Now again, last night, the President said something publicly unfortunately.  I am not picking on the President or making fun of him.  I am also not saying his suggestion did not warrant any kind of scientific study.  But by blurting out the concept of ultraviolet radiation, without any “who, what, why, when, how much”, too many people looking for a cure for Covid19, put an unnecessary and unproven pressure on scientists.

I am proof that there is value in “long term side effect” research.  And I am no expert in ultraviolet radiation or used in therapy.  All I know, like many, is that we get sunburned because of exposure to the sun.  Which means that UV energy needs to be harnessed, and controlled, then determined how to be used, and most importantly, the potential for side effects, short term, and long term.

Personally, I have gotten to handle UV radiation in my former employment to disinfect surfaces.  As the scientists report, it is very effective in killing bacteria on solid surfaces, especially in an area of bio-hazard contamination, or need for quarantine.  But the key is, it has to be controlled.  You can go blind from improperly handling UV rays.  And there is certain to be some sort of damage from pro-longed use.

Like I said, this was not something to just be tossed out as some sort of bragging point to present oneself as some sort of ideaman.  This was something that should have been talked about through his appointed directors to investigate.

To be completely honest, I do not know if it would work or not.  And really, if it was a flat out “no”, I do believe that the medical experts that were by his side should have shut the door on that though right away.  But before this  can go any further, it needs to be investigated, and there is not time to investigate long term (remember, my long term side effects did not show up until eighteen years later and continue to this day thirty years later).

Right now, the scientists need to focus on what they already know has the possibilities.  To re-direct their attention for something that has not even been a consideration at this point will drag this crisis out longer.

I only wish the President would allow his committee to do the talking.  They are the ones who actually know what needs to be done and how to get there.  Is not that why he appointed all of them.?

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