Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

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.

A Smile That Will Last Forever – A Tribute To Julie


Over the years, you have seen tributes that have been written for fellow cancer survivors, that had come into my life in one form or another, and had always had an impact on me with their attitudes towards life and survivorship, and sadly, pass away.  Unfortunately, for many of my fellow Hodgkin’s survivors, while we beat our cancer, it left us fighting for our lives against side effects caused by the treatments that saved us.  Julie passed away last week.  And as much as I knew about her, there are those who had even greater interactions and support with her, and found an even more eloquent way to pay tribute to Julie.
I have asked one of those fellow survivors, Gail, to put her words, here, for all to see the true impact that Julie had on all of us when she came into our lives.  Gail is a wife and mother, and a three-time cancer survivor, one of those cancers being Hodgkin’s Lymphoma, just like me, just like Julie.
Here is Gail’s tribute to Julie.
“There is a great relief and joy that comes when you find a group of people that understand you. Especially when it comes to health challenges.
Such is the case for my Hodgkin’s Lymphoma family particularly those treated with the same radiation and other therapies I was years ago. We are all now experiencing the same or similar repercussions. And even if we don’t have the same exact repercussions we know what it feels like to hear that you have been diagnosed with another one. (We find similar repercussions with people treated from 1960’s-90’s)
You bond with these people, go to doctors with them (albeit by way of text or messaging or reading a post after they are done), you get the fatigue they live with, the frustration they feel, the anxiety over health care issues and so so much more. They become family.
The hard part of this is the reality we all face. That death may find us long before it should because of those same repercussions.
Yesterday I lost my best and closest Hodgkin’s lymphoma sister, Julie Henderson. We called each other Wonder Twins. We laughed about punching doctors in the throat and kept each other going through the last 4 years of political craziness with laughter. Julie was the most giving person and also my biggest limoncello supplier (she taught Italian and knew where to find the best!!).
It has taken me all day to sit and put this in to words but I needed to. The reality is she isn’t the first person we’ve lost in our community of survivors…she won’t be the last sadly.
She shouldn’t have died because she had treatment in 1986 for Hodgkin’s…but she did.
Love you Wonder Twin. Give RBG a huge hug for me. ❤️💔💜

Throwing Meds At You Faster Than A 90 MPH Fastball


There was a time, that all I took was a morning vitamin.  Occasionally I would make a trip to the doctor, and if I had a cold or something, he would venture back into his lab area, and mix up a cocktail medicine for me, which fortunately was not often.  This was long before the first CVS or Walgreens was even a concept.

Then I was diagnosed with cancer, Hodgkin’s Lymphoma.  That was 1988.  Even during the time period I was treated, I only took the medicines that were necessary from my chemotherapy.  And then that was done.  I no longer took anything.  My attitude was, I had put enough medicinal crap into my body.  I would not even take an aspirin for a headache.

One of the first side effects that I had to deal with, was a result of radiation damage to my thyroid.  There are plenty of people that have thyroid issues, even without having gone through cancer treatments.  In my family, there were several members with likely thyroid problems.

The thyroid in its simplest explanation is what controls your metabolism and energy levels.  A thyroid disfunction does not automatically make you overweight.  It can also cause you to be too thin.

In any case, most times, thyroid disorders are treated with a common prescription called Synthroid (or the generic levothyroxin).  Doses vary depending on the hormone levels, but the goal is to get the person’s levels stabilized.  In other words, get your body back to working and feeling like it should.  Simple, right?

Not for a patient like me.  I fought my doctor, who had been my doctor for a long time, for three years, refusing to take it.  Of course, over that time, my levels had gotten worse.  And then, as she asked me one more time, to reconsider, I finally asked, “what will happen if I don’t?”

Left untreated, you could develop Grave’s Disease, Hashimoto’s Thyroiditis, or even cancer.  She got me.  I had not idea what the other two things were, but I knew what cancer was, and I did not want that again.

What a battle it was.

An incident happened later which solidified my attitude with caution and taking medications.  I have written about it in the past.  My first father-in-law had developed a mental condition that resulted in him being put on psychotropic drugs.  Not wanting to waste too much time on descriptions, if you have seen the movie “One Flew Over The Cuckoo’s Nest,” you can get the idea.

He had been exhibiting an unusual, and offensive behavior, something totally out of character for him.  And it was getting problematic.  We got him to the hospital, where he was being diagnosed with “dementia.”  Working in medical research, I had a problem with that, for two reasons.  One, the word “dementia” is really an umbrella type term, in other words, it is in that family of mental illness, but we just aren’t going to go further to find out which one.  The second problem I had, I had just heard a nurse taking his blood pressure, it was 60/40, way too low.  And she was instructing him to take his dose of blood pressure medicine he has been on for many years.  His blood pressure was already low.  Anyone knows, if you are not getting enough oxygen to the brain, you may not act appropriately.  There is way more to the story, but long story short, they ignored the blood pressure issue, put him on psychotropic drugs, which basically reduced him to a zombie-like state where he remained for a long time.

Then, some how, he had enough internal fortitude, enough awareness, he refused to take any more medicines, in fact, refused food.  He had enough.  I really think he wanted to die.  But then, something happened.  He went through major withdrawals, and eventually came out, as if nothing had ever happened.  The inappropriate behavior was gone.  His blood pressure had elevated.  He was back to himself.  What sucked was, I brought this up, and was ignored.  This poor man lost so much time in his life because he was not monitored and not administered his meds properly.

Over time, my doctor would also convince me that I needed to be on a medicine for my extremely high cholesterol, a condition that I inherited genetically, as well as something for blood pressure.

In 2008, as I have written many times, I had my first of two heart surgeries, courtesy of late effects from cancer treatments.

For whatever reason, two of my medications were changed.  I took one pill, it was a combination drug to treat both my cholesterol and high blood pressure.  But now, I was going to take two, the medicines split up.

Over time, I began to notice some changes.  I had warned my ex-wife that I was not feeling like myself.  I was forgetting simple things, 4-digit codes that I had used for years.  My sight was getting messed up, not seeing things that were right in front of me.  The breaking point, was at the dinner table one evening.

A simple accident at the table, my daughter spilled her glass of water.  And I freaked out as if the spillage would result in wood rot of the foundation of the house.  I immediately reacted and got up from the table, and walked out of the house to gather my thoughts.  This was not me.  Something was not right.

While I still had my wits about me, my father-in-law’s memory still fresh in mine, I sought out what could be happening with me.  What was different?  When did things change?  The medications were the only thing I could see.  Yet, nearly every doctor argued with me that it could not be.  Then I met Dr. Beatrice Golomb, from the University Of California in San Diego.

Dr. Golomb it turns out, had done a study on cognitive impacts of statin drugs.  The one drug that was switched on me, was for my cholesterol, a statin drug.  We have all heard commercials rattle off side effects of medicines, but did you know, not every one has to be reported?  Like, if the incidents were so miniscule, under a certain percentage, they did not have to be publicly reported.  That does not mean that those side effects do not exist, but clearly, unless you know they can, you will not likely get the help.

Again, I wrote earlier in full detail about this.  But I was convinced it was the higher dose that caused my issue, and quit taking it, my side effects cleared up.  It was the new prescription.  Why did my medicine get switched in the first place?  My other meds were working just fine.  I was told, “this is our protocol.”  Really?

In the movie, “Love And Drugs,” Jake Gyllenhal plays an aggressive sales rep for a pharmaceutical company, who falls in love with an ill character played by Ann Hathaway.  In this movie, I saw, and learned, just who all these people dressed so nice with their briefcases were, coming into doctor offices during my appointments, and, what they were doing.

And then it hit me.  These were the latest drugs on the market, and clearly the doctor was being encouraged to prescribe these new medications.  I was having none of that anymore.  I would eventually go back to my original prescriptions, having no problems ever since, other than my progressive issues.

So, here we are, in 2020, what a year it has been.  My main doctors are back in my home state, but I am encouraged that I need to have a cardiologist local to where I currently live, in the event anything should happen.  Makes sense right?  Wrong, not when you have trust issues.  And one way to cause those issues?

“Your cholesterol is kind of higher than we like.  I see you are on suchandsuch already.  I would like you to start taking this new medicine which shows wonderful success in compliment to statin drugs in lowering cholesterol.”

Have you ever heard the expression, “if it ain’t broke, don’t fix it”?  I got up, and walked right out.  I was not interested in taking another drug, especially to boost profits of big pharm at the possible sacrifice of my health through side effects.

There are so many things to consider when faced with having to take a prescription, especially adding medicines.  In the case of the thyroid, the medication itself can impact the absorption rate of other medicines, in other words, not allowing the other medicines to work properly.  Then, other medicines might actually cancel each other out.  And worst, sometimes the reactions can cause lethal situations.

If you are lucky, and deal with a pharmacy that has all your medications, a good pharmacist is likely to at least give you the warning, because they see your list of meds, and know the possible interactions.  But in the world of revolving door medicine, where you likely see a different doctor every visit, the attention is just not paid to the medical history of the patient, and hence, it becomes real easy just to throw the latest pill like a 90 mph fastball at a patient.

I am lucky I still have my primary care doctor after thirty years.  I know that she knows my history, and my beliefs when it comes to medicines.  I trust her.  She also knows, how to make a better case to convince me sooner that something is necessary.  Otherwise, in the words of Talking Heads’ David Byrne, “same as it ever was.”

 

 

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