Paul's Heart

Life As A Dad, And A Survivor

16 Oct 2014
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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.

Posted in Cancer, Education, Family and Friends, Inspired By..., Politics, Side Effects, The Heart and tagged , , , , , , , , , , , , , ,
15 Oct 2014

If You Are Sick… It Sucks To Be You.


GENERIC-master675

The headline in the New York Times for July 8, 2014 read:

“Rapid Price Increases for Some Generic Drugs Catch Users by Surprise”

The picture as shown above from that same article showed a patient meeting with her doctor.  She needs a drug called “Digoxin” for her heart.  It is the only pill that works for her.  And she is not alone.  There are hundreds of millions of people who need medicine to maintain their quality of life.  With Big Pharm taking full advantage of drugs they produce still on patent, basically charging whatever they want, without insurance, you simply cannot afford to be healthy anymore.

Generic drug availability was supposed to take care of that.  Obviously, with companies taking advantage of expired patents, drastically cheaper and affordable alternatives would finally offer patients a difference between affording life or choosing death.  But as new drugs come out to the market, once again on patent, two things happen.  Television commercials begin to appear telling patients the best new drug to do better than what a patient was already taking is available and needs to be discussed with their doctor.  This is followed by a lowered demand for the generic drug that many people rely on.  Then of course you factor in the costs to pharmacies, with surely the small “mom and pop” pharmacies not able to compete at all with the super chain pharmacies.  Even with insurance, you may no longer be able to take the drugs that have worked for you, simply because it is not convenient for Big Pharm.

Even though I am lucky to have insurance that includes prescriptions, my insurance still tries to dictate to me whether I will take the generic or the original name brand drug.  As a rule, I have always taken the name brand because a) I have always believed the name brand to be better than the generic, and b) I had the insurance to cover the cost.  Over the years however, my prescription plan tiered to make name brand more expensive to me, so of course eventually I adjusted to taking the cheaper generic drugs.

But as pointed out by potential presidential hopeful Bernie Sanders, Independent Senator from the state of Vermont, generic prices are soaring out of control.  If it is not health care costs going out of control for profit at the expense of a human life, health insurance also contributed to this skyrocketing cost, but as more patients turned away from the expensive alternatives to save and maintain their lives to cheaper costing generic drugs, Big Pharm did the only thing it could to solve its need for greed… jacking up generic costs.

This is disgusting for a couple of reasons.  Generics finally offered an alternative for people to take care of their health who otherwise could not.   But for those who are fortunate enough to have insurance that includes prescriptions, now those insurance companies are beginning to dictate what drugs they will cover, even though they are generic.  And the reaction, as should be expected, the less a drug is being prescribed, the more the price will go up as well, even if it is generic.  And that is what is happening.

Okay, so I addressed the issue skyrocketing generic drug prices.  People without any insurance covering generic prescriptions will no longer be able to afford medicines.  Those with insurance that provides coverage should be okay for now.  But what about the people in the middle?  What about those on Medicare and fixed income?  For a family I know, this has become a real issue.  They are covered under Medicare and also have AARP insurance.  But because of the level of retirement income received, their prescription coverage has maxed out, and we are only in the middle of October.  This means that the elderly couple cannot afford their medicines for the next two and a half months, medicines they need to keep them alive.  While some may argue that if they income level is too high for the benefits, then that is the couple’s problem.  No, it is not.  With the cost of living going up every year, rent, fuel, gas, food, GENERIC PRESCRIPTION DRUGS, but their fixed income remains the same, year after year, where exactly is their income level too high?  Their income stays the same while all of their expenses continue to rise.

I wish I had an answer to this dilemma, which is why I turn to you, the readers of “Paul’s Heart.”   I know this family is not the only one going through this issue.  But I am at a loss for anymore solutions to offer them, as I have tried even using common sense to help solve their needs, and nothing has helped.

So the question is this…

“For those who must deal with this “donut hole” for prescription medicine, how do you afford your medicine, or are you simply rolling the dice until the next year comes around?”

I need your help.  This family needs your help.  They are elderly, with one spouse dealing with both cancer and dementia combined, and at least for the next two and a half months cannot afford the medicine needed to deal with these two major health ailments, along with the other medicines taken.  Comments shared on this blog are kept confidential unless you specify otherwise.  And keep this in mind, your replies will not only help this family, but many others who read “Paul’s Heart.”

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14 Oct 2014

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.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment

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