Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

An Odd Observation


I was sitting in a restaurant recently finishing my meal, when another patron came up to me and said, “Well you don’t look too concerned about Ebola.”  Besides the fact that I am not very used to total strangers coming up to me and starting a discussion while I am eating, it was a very strange way to start a conversation.  Not to mention the fact, I am used to being the one who people watches.  Now I know I am being watched.

But getting back to the comment from the stranger.  I know that I would have much preferred to have been asked how I liked my meal, or perhaps if I knew where the restroom was.  But my concern about Ebola?

Long summary short, I have many health issues, very complicated, and one of those deals with my immunological deficiencies.  In other words, it is very easy for me to contract things such as the flu, pneumonia, and yes, I would have to assume Ebola.  I can also come down with Chicken Pox, SARS, bird flu, swine flu, strep throat, measles, mumps, and the list goes on, all from exposure to others.  As you can see though, I do not live in a plastic bubble afraid of what I might come down with (as opposed to those it is a life threatening situation and are required to live in that manner unfortunately).

I am also going to throw in my experience working with biohazards.

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I saw signs like this frequently during my career in medical research.  And in spite of my immunity issues, and against the advice from my doctors to avoid this kind of exposure, it was a job that I took great personal pride in doing, because ultimately, I believed I was taking part in finding cures for various and many serious diseases.  I was willing to do this job because I knew the precautions that I took to avoid contamination and exposure.  There was various personal protective equipment that had to be worn, and strict protocol for disinfecting equipment and myself prior to entering public thoroughfares.  You see, I was not just complying for the well being of everyone else, but for my own health, I needed to do it as well.  But if all protocols are followed, and the proper personal protection equipment is worn, then the risk of contamination is near zero.  So even in an environment that had very high risk for my health, I know that I was confident in the work that I performed.

So getting back to the odd introduction, I am more than aware of the word Ebola.  I am also aware of the “politics” of this awful disease as it is being hyped up by conservative and liberal news networks and the cartoonish fantasy network of Fox news.  Just like weather forecasters who strike fear into viewers with storms of the century and millennium, nowhere in my childhood and early adulthood (for the sake of math, the 1970’s, 1980’s and mid 1990’s) did I see the fear struck into viewers that caused mad rushes to grocery stores to empty shelves of food, and snow shovels and snow blowers from every hardware store.  The fact is, the media only cares about ratings, and the only way to get ratings is to shock and scare us.  It is up to us not to buy into these actions.  And the woman was right, I am not concerned about Ebola.

When I adopted my first daughter, my family had to deal with the deadly SARS virus.  In fact, that virus actually stopped the adoption process all together for China.  But as the illness was deemed under control, not eliminated, we were allowed to travel.  When we went to adopt our second daughter, we were then dealing with deadly “bird flu”.  There was no delay in the adoption process this time, nor any restrictions.  Then several years ago, we had to deal with deadly “swine flu.”  It was this particular deadly virus that forced my doctors to push harder than ever to get a vaccine that I did not want to get.

But the common flu kills more people every year, than Ebola has claimed victims.  Where is the outrage and fear to isolate patients and people exposed to the common flu?  How about parents who knowingly send kids to school already sick and contagious with whooping cough risking mass exposure to the school population?  Recently a PA courthouse was shut down for two days to deal with an infestation of bed bugs brought in by a dangerous mom hiding the critters in her stroller used for her child.  There are many other examples of people being irresponsible with risks to other people’s lives.  Where is the fear mongering by the opinions of news networks just trying to get ratings?

I am by no means making light of a deadly disease.  And it is deadly if contracted and not treated properly.  But it is not our president who is responsible for the spread of Ebola.  It is not our governors responsible for the spread of Ebola.  If it spreads, it is because of irresponsible workers or selfish people who do not want to inconvenience their leisure activities.  And even the same networks who fueled the fire of fear have representatives “eating their own” stating that the hyping of the spread of Ebola needs to stop (Fox’s Shepard Smith).

Over a decade ago, the biggest attack on our nation’s soil prompted many to question whether it would ever be safe to fly again.  And the majority of us never gave it a thought, regardless of the many opinionated newscasts who constantly urged us to be afraid, be very afraid.

So again, this time our country faces yet another attack, this time biological, and the media has successfully scared many into believing that they will contract Ebola.

I have enough on my plate to worry about.  I must travel on Monday and Tuesday inside a flying canister trapped with other passengers.  I am certain that I will hear at least one person cough.  It could even be me as the dry air has a tendency to cause this.  But I will not be wearing a “surgical mask” (for the record, this will never prevent you from catching something that is airborne because it does not seal completely around your mouth and nose – and for men with facial hair, you cannot even wear something that will work, a respirator, because it cannot seal over your facial hair.).

I am going to arrive and return, and without Ebola or having been exposed to it.  No, I am not concerned about Ebola.  Thank you for asking.

Being Humane


Have you ever watched someone suffer in chronic or terminal pain?  Have you ever seen a young patient with tremors that just would not stop?  Have you ever witnessed someone not wanting to eat, losing weight, their bodies wasting away because of the side effects of other medicines meant to save their lives?  If you could wave a magic wand over the patient, to make any of these or other symptoms, just magically disappear, would you do it?

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Then many states will have that opportunity for voters to wave their “magic wand”, AKA the right to vote, to approve legalizing medical marijuana, joining 20 other states who have decided that it is a humane need to provide comfort and relief to patients suffering debilitating diseases who cannot find relief otherwise.  Even if six more states approve medical marijuana use, still, almost half of the United States has no plans to legalize medical marijuana.

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Alzheimers, Cancer, ALS (Lou Gehrigs Disease), HIV, Osteoporosis, Multiple Sclerosis… we all know at least one person who has suffered with one or more of these diseases.  And we all have to agree, it is definitely suffering.  Suffering triumphs over quality of life, but it does not have to.  The fact is, and cannot be denied, marijuana would help every patient deal with the chronic side effects and pains of nearly every malady known to man.

At least three times in my life, had medical marijuana been available during my multiple medical crisis, I would have done much better.  I could never control my nausea with the prescription meds given during my cancer treatments.  The unbelievable pain I endured following my open heart surgery from having my breast bone cracked in half only controlled by a narcotic powerful to knock my unconscious… great way to deal with pain, huh?  Life-long chronic pain for late developing side effects when at its worst, taking up to 4 different drugs to just touch the pain, and give slight opportunity to sleep.  I can only wish I had the opportunity to have been able to use medicinal marijuana.

My father, who recently died from lung cancer, prior to his death, had been dealing with a lack of hunger issue.  Well, as we all know, one of marijuana’s awful side effects is causing hunger.  But fortunately, he was prescribed Marinol, to help boost his appetite, which it did.  Do you know what it did not do?  It did not make him a stoner.  He did not get high.  He ate.  It helped to improve his life.

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With all the benefits that medical marijuana has to offer, how could anyone be against helping a patient live a more humane quality of life?  There is absolutely no reason at all for anyone to be against this treatment option.  Yet they exist.  And their reasons are just as confusing and contradictory as their beliefs about the drug and its influences.

As a teenager back in the 1970’s, well after marijuana was mainstream, we were constantly taught, that cigarette smoking was bad.  Not just because of causing cancer, and heart problems, but because teen smoking was a “gateway” to smoking pot, which of course was a “gateway” to harder drugs and alcohol.  But was teen smoking made illegal?  Eventually.  Were teen smoking laws enforced?  There is not going to be an answer to this because enforcement of teen smoking is a joke, especially since many parent provide the cigarettes themselves.  But over time, we have gotten away from the “gateway to pot”, forgotten about the lethalness of cigarette smoking, and instead have now made the main “gateway” label, applied to marijuana.

That is right, several want you to believe that medical marijuana is going to be the gateway to harder drugs.  Alright, I know I am not being fair.  Of course those few actually mean “recreational marijuana”, not medical marijuana.  But they do believe the legalization of medical marijuana will lead to the legalization of recreational use.  And this is what the anti-medical marijuana people want to prevent.  They want patients who are suffering, to continue to do so, so that some day, other people who just want to smoke pot for the giggles of it, which still would not effect them because they were neither patient or user, to continue to suffer.

This is the only argument that those against medical use of marijuana can state.  They do not want recreational use of marijuana legalized and they are afraid that will be the next step if medicinal use of marijuana is legalized.  And this is a stupid thought process.  And for that selfishness people will continue to suffer needlessly.

Cigarettes are known to kill people.  They definitely killed my dad and grandfather just to name two people I knew.  Have we made them illegal?

Alcohol is known to kill people.  I have buried too many to count.  Have we made that illegal?  Oh yes, we tried that.  It did not work.

Marijuana to my knowledge has not killed anyone.  I definitely do not know anyone who died from marijuana usage, medical or recreational.  Why is it illegal to this day?

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My state of Florida is one of the latest states to finally consider the humanity of access to medicinal marijuana.  On November 4th, voters will finally be to help patients deal with chronic pain, side effects, and terminal illnesses.  Spearheading the movement in Florida is attorney John Morgan who advertises his campaign with the loss of a loved one who needlessly suffered not having access to a drug that definitely would have improved the quality of life.

The sad thing is, in anticipation of approval of Amendment 2, the legalization of medicinal marijuana in Florida, many Florida communities have already taken steps to prevent accessibility to prescription marijuana.  In Naples, a very conservative community, their city council just banned any dispensaries within city limits.  In other words, NIMBY (Not In My Back Yard).  Again, the only argument given is that medicinal marijuana will lead to recreational, and Naples does not want that.  So if you have chronic health and pain issues, perhaps Naples is not going to be the place you want to rest and convalesce, especially if you need the convenience of a dispensary for something although hopefully legal, just will not be available there.

Another unusual comment as to the denial of using medicinal marijuana came from an unusual source.  The president and CEO of the Naples Community Hospital Healthcare System, Dr. Allen Weiss offered an op-ed piece in a recent Florida Weekly…

“I believe medical marijuana is a solution to a problem that does not exist.  The danger in allowance of ‘medical’ marijuana is that it could act as a starter drug in our nation.  There are already existing, safe, easy-to-take medications readily available and prescribed by oncologists and physicians (this sentence was shortened for content, but this was the gist of the comment).”

Do you see this?  Is this really the reason a major health leader is against something that would make a difference to the quality of someone’s life?  Worried about gateway usage from someone chronic or terminal?  Or is the real reason that the pharmaceutical industry stands to take a huge loss from loss of addicting prescriptions for pain and depression for a plant we all know would cost 1/100 of what many generic drugs actually cost?

I am not a pothead, or stoner.  And I do not care if someone else uses the drug for recreational use.  But having been on opioids and other prescription medications for chronic and acute pain, all having various side effects of their own, three times in my life, the odds are in my favor that I will some day face that need again.  And I am hoping that the voters of Florida do the right thing on November 4th, and vote yes on Amendment 2, and legalize the human use of medicinal marijuana.

The Price Of The Cure


Jerry Garcia

There is the obvious.  Cancer, left untreated will kill you.  Not maybe, it will kill you.  And if you have every been by the bedside of someone dying from the late stages of cancer, the quality of life is painful and upsetting for the patient, loved ones, and caregivers.

There are treatments available for many cancers, many resulting in full-lifetime remissions, and several at the very least, the ability to manage the cancer, in maintenance fashion to keep the cancer from worsening.  And in some cases, the treatments may be ineffective at all.  And while the immediate side effects of any treatment –  surgery, chemo, radiation, immunotherapy, and others – may be unpleasant, the stereotypes do not lie, often times those side effects can also be effectively managed to lessen their severity.

But what happens when the treatment itself is worse than the cancer?  How do you choose between something that is meant to cure you of a fatal disease, but has the potential to make things bad or worse for you in the long run?  What do you decide when faced with the possibility that the treatment could actually make things worse?

After the initial shock of a diagnosis wears off, the last paragraph is the most dominant in concerns.  Untreated… dead.  Treated… remission…other bad things happen because of the treatment.  Treated… dead.

No one wants to die.  And while the initial thought might just be, “oh my God, I’ve just been diagnosed with cancer.  I’m going to die.”, that moment is often quickly going to change to, “I want to beat this.  I can beat this.”

Medicine has come a long way in treating all the various forms of cancer.  But it still has a long way to go.  Nearly every adult has had to sign a waiver that states the risks with any kind of procedure.  And though these waivers are fairly general in nature, all too often, important details are left out.  Minor side effects often do not need to be publicized if the occurrences are not frequent enough.  That does not mean that they do not exist, just that it is not required to be discussed.

Imagine, as I was perusing through my medical records recently from when I was treated for my Hodgkin’s Lymphoma back in 1989-1990.  And I can actually remember everything because I was told exactly what was written.  The exposure to the amount of radiation risked pericarditis, a swelling of the lining around the heart.  Potential risks from my chemo were a secondary cancer, such as leukemia.  If you have followed “Paul’s Heart” or read back posts, you know the doctors and medicine “missed it by that much” (as Maxwell Smart would say).

The radiation I was exposed to was 4 times the LIFETIME MAXIMUM of radiation (much less is used today, thank you very much).  And one of the drugs used in my chemo cocktail was a derivative of a chemical used by Sadaam Hussein to commit genocide on his people in Iraq and Kuwait.  Yet, the possible risks were just casually mentioned.  No need to worry.  The cure will not be as bad as the cancer.  I now have had open heart surgery, other heart valve issues, carotid issues, restrictive lung disease, radiation fibrosis (muscle atrophy), spinal issues, immunological issues, and a whole host of others.  But no pericarditis.  No leukemia.

But then there is the extreme as I mentioned in the story about Michael (“Meet Michael” published in October).  The one drug of his chemo cocktail had an immediate effect on his heart, but no one thought to check, and he died.  My father had gone through surgery to remove his “stage 1 lung cancer”, went through chemo as preventative, and against my recommendation, went through radiation therapy additionally as prevention, only to seemingly have his cancer turn super aggressive to stage 4, untreatable, and die.

I often get asked, “would I go through it again?”  Back in 1990, I said emphatically , “NO!”.  If it ever came back, would I ever go through treatments again, and I would say “no.”  But after the adoption of my daughters, everything changed.  I wanted to live for them.  But I am saddened by all that they have had to witness with my health since, and having watched their grandfather die from lung cancer.  If you asked Michael’s family if they would allow him to choose treatment again, their answer most likely may be different.  I know for a fact, my father would have given anything to not have gone through the radiation.

This post is not to be “anti treatment” at all.  It is rather meant to be an illustration of the agonizing choices faced by patients and families.  There are over 12 million cancer survivors and not all have issues like I have, and in my lifetime, I expect that number to double.  Which means we are also not solving the issue of cancer prevention, let alone, finding a safer cure any time soon.  But it is one of the hardest decisions a person will have to ever make.  It is about the quality of life we want to spend the rest of our lives.

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