Paul's Heart

Life As A Dad, And A Survivor

Twice The Frustration

Over thirty years of cancer survivorship, I never thought I would see the days, of better diagnostics, treatments, and extended survivorship.  I definitely did not expect to survive this long.  I wanted to.  I just did not think it was possible.  Yet, here I am, witness to progress over three decades.  I am able to look back at the progress from those who were treated before me and the barbaric methods used to treat their Hodgkin’s Lymphoma.  And as I see the many social media pages, I am amazed at the progress made in just the short time since I was treated.  Being a witness to this progress has been the backbone to my direction as an advocate.

If I had to describe myself from the advocate point of view, it would be a combination of Patrick Swayze from Roadhouse and his “never quit” fight to the death determination, and the proverbial “bull in a china shop”, not worried about the aftermath.  As long as my advocacy effort was successful.  One aspect was missing for a long time, because I never needed to worry about it.  Someone else always took care of that for me.

A moral compass, or a voice of reason.  I had a couple of those people in my life, in my early survivorship, that provided me guidance when it would ever get called into question.  But as issues with my survivorship worsened, the dials of my advocacy efforts dialed up as the need for advocacy in survivorship became even more evident.

Two posts that I read yesterday, frustrated me, horribly.  And as an advocate, it cannot be handled like the bull or Swayze.  It needs to be handled with the third characteristic, the voice of reason.  To be honest, even once things started sinking in for me the path I was on, I am still a bit uncomfortable with being looked at as a “voice of reason,” rational.  But the truth is, I have been there.  I have done that.  I have seen the progress.  I have seen the success.  For thirty years.

The two stories were all too familiar.  I see them many times throughout the year, even on the same pages.

This is the truth.  Chemotherapy and radiationtherapy are difficult, and for the most part, toxic.  But, they are scientifically proven as treatments to either extend life, maintain quality, or put a patient into remission (also considered “cured”).  With today’s awareness, people want “healthier” ways to deal with cancer.  I get it.  I have written extensively over the years about the side effects, short term and long term of these treatments.  And in the case of Hodgkin’s Lymphoma, there is a huge success ratio, not to mention the progress made in diagnosis and treating with these modes of treatments.  But they are still dangerous.

I saw the post come up, looking for alternative options.  The first thing I have to do before I respond, is research the writer.  I take it upon myself, to determine if this is someone legitimately looking for an alternative perhaps because nothing has worked.  Or is it someone who just wants to take a less toxic approach?  Or worse, is it a “troll” just trying to stir up controversy on what is normally a very helpful website?

To be clear, I am 100% an advocate for going the scientifically proven method supported by decades of research by various institutions.  That said, I do support “complimentary” methods, as long as they are approved by the oncologist.  But wait, what is the difference between “complimentary” and “alternative”?  There is a difference, though both supplements are the same.  Complimentary works along with the chemo and radiation, if the oncologist feels that it will not compromise the treatment plan.  But alternative is actually replacing the scientifically proven treatments with something, that while healthy, does not have the success that modern medicine provides.

And to make matters worse, even though those alternative methods may provide some relief and the confidence that it is working to cure the cancer, it is more likely than not, that is it not curing the cancer, just boosting the other systems of the body.  That bad thing about this, and the most important thing about Hodgkin’s Lymphoma, is timing.  The success rate for Hodgkin’s Lymphoma is at its best when it is caught and dealt with early, and quickly.  Going the alternative route first, wastes that valuable time.

Is there a place for alternative medicine?  I am sure there is.  But it needs to be studied more extensively than it has been, and it must be supported by the doctor you trust to cure you of this awful disease.  Until then, it is always my position, do the scientifically proven treatments, and if able and desired, complimentary additions.

The other post, refers to the lack of a protocol, that I cannot believe is still not widespread, no, 100% being used in treating Hodgkin’s Lymphoma.  And the truth is, this protocol should also have an impact on those being treated for breast cancer with this particular drug.  I have written many times about the drug, and the ability to monitor the side effects caused by this particular drug.  And many institutions do use the protocol, while sadly others still do not, either because they do not know, or do not believe it is financially worth while, which that one pisses me off, because it can make a difference.

Two of those prior articles if you search the archives are called, “A Call For A New Protocol” and “If My Survivorship Will Mean Anything.”  Those posts will go into the full details of an interview that I completed with a scientist who researched how to diagnose potential damage, if caused by one of the chemotherapy drugs for Hodgkin’s Lymphoma, and now breast cancer, Adriamycin, something we survivors refer to as the “red devil.”  It is one of the most powerful and successful ingredients in the chemo cocktail.  And sadly, for about 5% of the patients, it can cause issues with the heart.  And unless a patient brings awareness of any issues like shortness of breath or pain, up until recently, the damage, if any, caused by this drug, went unnoticed until it was too late, and extreme.

But as the story I mentioned above, this scientist discovered a technology that could determine if the heart was being damaged by the drug, as early as the first dose, not waiting until the end of the 12th dose.  I cannot encourage you enough to check out those prior posts.

Across the country, I know this protocol is now being followed by many oncologists.  Sure, this echo is expensive after every dose.  But do you know what you cannot put a price on?  A human life saved.  At first signal that damage is occurring, the oncologist has options available to change either dose or the drug regimen itself.

Yet sadly, either because of money or the lack of awareness, still so many do not know of this valuable tool that does make a difference.

When the author of the post wrote about her symptoms, related to shortness of or difficulty breathing, it only makes sense to gravitate to the obvious source, the lungs.  And it is likely that another drug in the cocktail, does have the capacity to affect the lungs, called Bleomycin.  But the truth is, the heart also affects the breathing, and in spite of being aware of the potential for heart issues because of Adriamycin, attention to the heart is not recognized as quickly as it should.

In both cases, I urged the need for them to advocate for themselves, to chose the treatments that are proven to work, to ask the questions that do not make sense, but someone else’s experience proves otherwise.  And casting aside the attributes of the bull or Swayze, I chose the directions of the moral compass, the voice of reason.  Dr. Banner instead of the Incredible Hulk.

That’s right.  That’s me with the Hulk himself, Lou Ferrigno.

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