Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

28 Sep 2014

Reefer “MADNESS!!!”


In 1936, a FICTIONAL documentary was released about the addictive nature of marijuana.  It was called “Reefer Madness”.  I was unaware, as probably most people, that the alarmist anti-pot propaganda was re-released as a movie musical in 2005.  Admittedly, I could only tolerate watching even the original movie for about ten minutes, which was ten minutes I would never get back in my life.  Over my lifetime though, I have seen plenty of films using marijuana, pot, hash, cannabis, whatever you want to call the plant.  And I had never seen anyone smoking pot in these films as anything more than just real happy.  One of my favorite movies is “The Breakfast Club” and there is a scene where the students, who are locked in the library on a Saturday morning for detention, the “stoner” in the film invites all the others to partake in his stash.  It was one of the best scenes in the movie, because for one brief moment, the walls separating all of their differences with each other were brought down, allowing them all to enjoy that moment laughing with each other, without any form of discrimination.

I do not want this post to be about recreational use of marijuana.  I am forty eight years old and in my lifetime I have never heard of anyone dying from using marijuana.  While I do not smoke pot, I am not against anyone wanting to smoke it.  I know I would rather inhale second hand pot smoke than second hand cigarette smoke and die.  At least I will not get cancer from marijuana.

Over the summer, I moved to Florida.  One of several states that has yet to legalize medical use of marijuana.  There are some instances that Florida will allow it, but in general, it has not been legalized in Florida.  There is a proposition, called #2 on the ballot for this Fall’s election.  I fully support the medical use of marijuana, and I want to encourage anyone reading this post to share it.  And if you live in a state that has not made that leap to medicinal use of marijuana and is waiting for an election to do so, it is time to get over the false stigma of marijuana use to allow needless suffering of patients.

Cigarettes kill.  Alcohol kills.  Texting while driving kills.  But this is tolerated because it benefits big companies like Tobacco, Alcohol, and of course the big telecommunication companies.

Chemotherapy has the ability to kill.  Depression meds have the potential to make you suicidal.  Blood pressure pills can kill.  Pain medicines can lead to death.  And then of course there is the overdosing of sleeping pills.  But this is okay because big pharm companies only care about the health of the patients that take the meds and want you to trust that their drug is best for you.

But marijuana does not kill.  Hmmm… what big companies have a stake in marijuana?  Well evidently, now some pharm reps are recognizing the national movement to legalizing medical marijuana and want to be first in line to build their plants.  After all, big pharm stands to be the biggest loser in the legalization of medical marijuana because many patients would no longer need the pharmacy company’s overpriced drugs and would need to replace their revenue with something.  And of course, with approval and success of the medicinal marijuana companies, I agree, it probably would not be long before we followed Colorado and Washington state and legalizing recreational use because once the factories are already established, in theory they would have the biggest jump on mass production.

There is a problem however.  The United States has not legalized the use of medical marijuana.  Instead, they simply allow each state to make the decision, and then the Feds are encouraged to concentrate on more severe issues.  So if it is prescribed, in theory, you could face Federal charges for medical use of marijuana, but not likely.  And if your state approves the medical use of marijuana, that should be the end of the story.  But now it is coming out, well in advance of the election, communities are passing their own regulations, regardless of what the election results are.  Local politicians suffering from NIMBY (not in my back yard) are already passing regulations to deny any medicinal pot shop to open within city limits.  They hide behind the “we don’t need the element that marijuana will bring to our community” attitude.  They totally do not mention the issues with illegal pot use for people who just want to get happy.  But they are against a drug that would benefit patients who are suffering from severe and painful maladies (physically and emotionally) such as ALS, cancer, Alzheimer’s, MS (multiple sclerosis), and other maladies.

So how bad is marijuana?  I have already stated that it is nowhere near as deadly as the big three I listed earlier, cigarettes, alcohol, and texting while driving, and none of those are illegal for recreational use and provide no medicinal benefit.  But let us take a look at some classes of prescription drugs and compare their side effects to that of medicinal marijuana.  You be the judge of which would be more beneficial and safe, and most importantly, improve the quality of life for a person suffering with their morbidity or mortality.

Treating Nausea, Loss Of Appetite, Vomiting, Weight Loss, Muscle Atrophy

The following side effects of common drugs to treat these issues are listed as follows (from Drugs.com):

Less common

  • Bloating or swelling of the face, arms, hands, lower legs, or feet, blurred vision, dizziness, headache, nervousness, pounding in the ears
  • rapid weight gain, slow or fast heartbeat, tingling of the hands or feet, unusual weight gain or loss

Incidence not known (this means that you won’t necessarily be told about these issues on the warning label of the drug)

  • Abdominal or stomach pain, agitation, black, tarry stools, bleeding gums, blistering, peeling, or loosening of the skin
  • blood in the urine or stools, chest pain, coma, constipation, continuing vomiting, convulsions, dark-colored urine
  • decreased urine output, depression, fainting, fast, pounding, or irregular heartbeat or pulse
  • general feeling of tiredness or weakness, high fever, high or low blood pressure, hostility, increased sweating
  • indigestion, infection from breathing foreign substances into the lungs, itching, lethargy, light-colored stools
  • lip smacking or puckering, loss of consciousness, muscle twitching (MS sufferers have enough problem with this)
  • no blood pressure, no breathing, no pulse, numbness or tingling in the face, arms, or legs
  • pain in the stomach, side, or abdomen, possibly radiating to the back, pain or swelling in the arms or legs without any injury
  • pain, tension, and weakness upon walking that subsides during periods of rest, pinpoint red spots on the skin
  • pounding, slow heartbeat, puffing of the cheeks, rapid or worm-like movements of the tongue
  • rapid weight gain, recurrent fainting, red irritated eyes, red skin lesions, often with a purple center
  • seizures, severe constipation, severe headache, severe muscle stiffness, severe vomiting
  • sores, ulcers, or white spots in the mouth or on the lips, stupor, sudden severe weakness
  • swelling of the face, ankles, or hands, total body jerking, trouble with speaking or walking
  • troubled breathing, twitching, twisting, or uncontrolled repetitive movements of the tongue, lips, face, arms, or legs
  • uncontrolled chewing movements, unusual bleeding or bruising, unusually pale skin
  • vomiting (HEY!  Wait a minute!  If you are taking this to reduce vomiting and nausea…)
  • yellow eyes and skin

The list actually continues.  Call me a silly goose, but if I am already suffering from side effects, why would I risk taking something that could actually make it worse for me, when all I would have to do is pop a pill, or even pack a pipe, or eat a cookie with the medicinal marijuana?

Let us take a look at another drug class, for depression.  The object is to make the person not sad anymore right?  Here are some side effects of common antidepressants (according to Drugs.com):

Depression

 

  • agitation, chest congestion, chest pain, chills, cold sweats, confusion, difficulty with breathing, dizziness, faintness, or lightheadedness when getting up from a lying or sitting position
  • fast, pounding, or irregular heartbeat or pulse, muscle pain or weakness, absence of or decrease in body movements, bigger, dilated, or enlarged pupils (black part of the eye)
  • convulsions (seizures), difficulty with speaking, dry mouth, fever, inability to move the eyes
  • incomplete, sudden, or unusual body or facial movements, increased sensitivity of the eyes to light, poor coordination
  • red or purple patches on the skin, restlessness, shivering, sweating, talking, feeling, and acting with excitement and activity you cannot control
  • trembling or shaking, or twitching, back, leg, or stomach pains, blindness, blistering, peeling, or loosening of the skin
  • blue-yellow color blindness, blurred vision, constipation, cough or hoarseness, dark urine
  • decreased frequency or amount of urine, decreased vision, difficulty with swallowing
  • electric shock sensations, eye pain, fainting, general body swelling
  • headache, high fever, hives, inability to move the arms and legs, inability to sit still, increased thirst
  • incremental or ratchet-like movement of the muscle, itching skin, joint pain, light-colored stools
  • lockjaw, loss of appetite, loss of bladder control, low blood pressure, lower back or side pain
  • muscle spasm, especially of the neck and back, muscle tension or tightness, painful or difficult urination
  • painful or prolonged erection of the penis, pale skin, puffiness or swelling of the eyelids or around the eyes, face, lips, or tongue
  • raised red swellings on the skin, the buttocks, legs, or ankles, red, irritated eyes, sensitivity to the sun
  • skin redness or soreness, slow heart rate, sores, ulcers, or white spots on the lips or in the mouth
  • spasms of the throat, stiff muscles, stomach pain, sudden numbness and weakness in the arms and legs
  • swelling of the breasts, swelling of the face, fingers, or lower legs, swollen or painful glands
  • tightness in the chest, unexpected or excess milk flow from the breasts, unusual bleeding or bruising
  • unusual tiredness or weakness, vomiting, weight gain, yellowing of the eyes or skin

The list continues on and on.  But also includes “may create or increase thoughts of suicide”.  Isn’t that why you take an antidepressant so that you do not have those thoughts in the first place?

No matter the class of drugs that are supposed to help ease our pains, help us sleep,  keep us calm and happy, make our heart pump properly, every drug carries with it a similar list of things that could go wrong taking it.  We are willing to risk our lives taking big pharm’s prescription drugs.  Marijuana is not without its risks, but nowhere near the level of prescription drugs or the way marijuana has been demonized.

I did not have the option of using medicinal marijuana when I was dealing with nausea back when I dealt with my cancer.  I had plenty of friends who were willing to help me with this if I ever made the choice to do so.  I did not have the option of using medicinal marijuana when I was recovering from my heart surgery, or dealing with the many painful issues of my long term survival.  But I am sure that would have been better than taking all the opiates and other addictive pain killers to control my pain.  Do not get me wrong, I needed my pain controlled and I am thankful that those meds did their job.

But as I watched my brother-in-law whittle away to nothing but a shell from the ALS that would take his life, as I watched my father fade away in extreme pain to lung cancer, I cannot help but wonder, how much more humane the ends of their lives would have been, had it been legal to give them medicinal marijuana.  My father towards the end had been given Marinol, a form of the medicinal marijuana which was meant to increase his appetite which had dwindled down to nothing.  It did help with the appetite, but was not enough to deal with the pain.

It would be a shame to deny another humane option to treat those who suffer from painful debilitating and fatal issues, just because someone else is suffering from NIMBY when in reality, the majority of us already have it in our backyards currently illegally.  But where are the people screaming about enforcing the law on illegal pot smokers (I do not suggest that because I believe our system is bogged down enough on this particular war on drugs)?  And if you do not support medical marijuana because you are afraid of the seeking and approval of recreational marijuana, then you are unnecessarily making people with ALS, cancer, MS,Alzheimer’s and many more suffer from their diseases.

It is my hope that Florida residents do vote “YES” to Prop 2, legalizing medicinal marijuana.  There are just too many ill people who would benefit from its use.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart and tagged , , , , , , , , , | Leave a comment
27 Sep 2014

Cancer – “Just Move On Already”


A person who has to deal with cancer, is dealing with one of the most difficult things to threaten their life.  Changes occur to both the body and the mind.  Cancer changes the way our body feels and reacts.  Cancer changes the way we think, permanently.  For some, the thoughts that are changed are life changes… “I’m going to live a better life” or “I’m going to do things differently, for the good”, not taking anything for granted.  But for some, thoughts are dominated with paranoia, about dying, about the cancer coming back after remission has been declared, and thoughts about mortality.

One thing I wish my oncologist would have told me, is that I would never be done with cancer.  Sure, I have survived it 24 years.  But after all those years, I am still dealing with cancer and the late effects that have developed in me over that time.  Then again, two and a half decades ago, I, like many others were simply lumped into a “survival rate” of five years so I am sure the thought never occurred to him that I would be around all these years later, dealing with the ramifications of my survival.

Besides surviving the cancer battle, the most important thing to a cancer patient is being able to talk about their issues:  how they feel on a particular day, concerns for their future, experiences with their appointments.  This is part of the process.  We need to be able to talk, and not just a psychologist or therapist, but to those closest to us, family and friends, and perhaps some trusted acquaintances.  But just as the cancer patient has no experience in dealing with cancer, most non-cancer people have no idea what it is like to deal with cancer, physically, or emotionally.  Perhaps, they may even have some experience, but have been left unable to face yet someone else dealing with cancer.

My father passed away earlier this year from lung cancer.  But it was me that he turned to for support and wanted only one thing from the doctors, to be a survivor like his son.  Yet when I was diagnosed with Hodgkin’s Lymphoma, my father was nowhere to be found.  We talked about this years later.  I was unaware until that moment, that my paternal grandmother had died from cancer of the gall bladder.  My father had been lied to about her illness (it was not cancer), only to watch her erode away, suffer, and die.  Eventually he was told it was cancer.  My father did not want to watch what happened to his mother, happen to me.  I do not fault him for that.  He carried that his entire life, no one to talk to about it.  That is, until he was diagnosed himself.  I wore many hats with the care of my father, but none was as important as being an ear to listen and a shoulder to lean on and vent.  In the end, it was comforting to him, that he was understood about what he was going through.

We never get over cancer.  Fortunately for most today, unlike survivors like myself in longevity, protocols now require lifetime following.  I can only imagine if that would have been applied to me.  Instead of disappearing off the planet once I hit the magical five year mark.  Had I been followed more closely, my heart, lung, and other issues would have been discovered and better managed than what I am left with today.

I do not blame her, but what did not help was my first ex-wife did not really discuss anything with me at all.  From the moment of diagnosis, and through all but one of my chemo treatments and none of my radiation treatments, she never spoke of my cancer.  And when I was finally done with my treatments, she would express frustration that I would continue to try and stay involved in the cancer world, telling people what I had gone through.  I do not fault her for this.  She did not want cancer in her world.  My cancer was gone, and so should any conversation about it.

My second ex-wife (to be), also had issues with my survival of cancer.  She got to enjoy a lot of healthy non-cancer years with me, knowing that I had cancer, but was simply not having to deal with it in the form of appointments.  But when I was diagnosed with a major blockage to the main artery of my heart, and it was discovered that the radiation therapy was the cause behind the “widow maker” blockage.  And with that, it was discovered that my cancer was coming back, but in the form of late developing side effects from both the radiation and chemotherapy.  Cancer was once again, controlling and dominating my life.

While her concern originally was genuine, I would soon realize that she too, would expect me to just move on once I was recovered.  And perhaps, had that been the only issue I had to deal with, or even at the least, had nothing to do with my treatments, then perhaps it might have been possible for me to just “move on.”  But with the knowledge that long term cancer survivors like me have the potential to develop severe late side effects even decades after treatment, once again, it was back in the forefront of my life.

I will say that the reasons for both of my divorces were not caused directly by my cancer and late effects, but cancer definitely had something to do with lighting the fuse.

I will not post about my divorce in this post, but will do so in a few days.  But long story short, both of us have moved on into other relationships.  For me, it is no longer an issue to mention I had cancer 24 years ago.  But now any relationship I begin, I am up front about the mess that my body has become on the inside.  While I look quite fine physically on the outside, on the inside, it can become quite unnerving being with someone you know has the potential for multiple emergency situations.  I have found someone who understands what I have gone through, and accepts me.  She also watches out for me, to make sure that I do not overextend myself physically unlike in the past when I pushed myself beyond limits because I felt it was better than to sacrifice.

I do not know why my two ex-wives felt the way that they did.  Perhaps they were afraid.  Maybe they were in denial.  I suppose we should have had some sort of conversation about their feelings.  Only then, would I have been able to figure out if it was me, or them.    If it was them, then perhaps they might have been able to talk to someone.  All I know is that I found a therapist to deal with my cancer issues and clearly, it was normal not to be able just to move on.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
26 Sep 2014

I Found Another “One”


“One person can make a difference” is probably the most commonly shrugged at phrase used in the English language.  One person so far has never made a difference in an election (though clearly, if enough “one person” voters showed up, who knows what the results might be.  When it comes to fundraisers, look at the overwhelming response to the “ice bucket challenge” for ALS, started by one person.

In the world of lymphoma, I have always been a believer that one person can make a difference.  That is one of my drivers behind “Paul’s Heart.”  Look, when it comes to cancer, breast and lung cancer get the majority of the attention, while lymphoma (and other blood cancers get very little).  September is National Lymphoma Month and National Blood Cancer Month.  And while the very well recognized Leukemia-Lymphoma Society is well known to me, as well as other blood cancer patients, the LLS does not have the notoriety of the American Cancer Society.  While the ACS holds events such as Making Strides For Breast Cancer and the Relay For Life, raising hundreds of millions of dollars, the LLS during its recent national Facebook campaign for the month of September, just passed the $300,000 goal, to me personally, a disappointing amount.  But again, not many people are familiar with the LLS and blood cancers.

It is hard to fathom, with all the attention towards the big things like ALS and more familiar cancers, that even the introduction of a rare cancer, and a simple fundraising drive, like, Light The Night, would be just as successful.  But the truth is, because Lymphoma is so rare, it does not get the attention that other cancers get.  Sure, plenty of celebrities have faced Lymphoma.  I will not mention them in this post as I have already listed many famous people earlier this month in a post titled “The Faces Of Lymphoma”.  And with all of those names listed, no one still seems to pay attention to the research needed to find better and safer treatments for Lymphoma.

But another aspect that I hoped to raise, as one person, was the need to recognize developing side effects, both short term, and in my case, late term.  Again, these things that have happened to me, and many others, are indeed rare, but without awareness that they exist, how will medicine ever realize more needs to be done for lymphoma survivors.

This morning I had the pleasure of having breakfast with someone who I consider another “one person trying to make a difference.”  As occasionally happens with lymphoma patients and survivors, cardiac symptoms are something that really need to be paid attention to.  But other than a few select late term clinics such as Memorial Sloan Kettering, MD Anderson, Cleveland Clinic to name a few, the average hospital and too many oncologists, while recognizing the side effects of anthracyclene drugs, in spite of their success in treating lymphoma, have a toxicity to the heart and its pumping ability.  I have been beating this drum for a long time, not just from my own experience, but also, as many of you have read, in “Meet Michael”, the young man who died at the too young age of 24 after successfully getting through treatments only to die from the side effect of the drug Adriamyacin, an anthracyclene.

But who am I to draw attention to this?  I am not a doctor.  I am just one person trying to make a difference to include a simple ultrasound, or some other screening, that when using a drug, that is known to have even a minimal low percentage chance of affecting a body organ, that some sort of surveillance is done on that body organ, not just for baseline at the beginning, and at the end of the treatment.  Because as was written about Michael, he had never even gotten to his post treatment surveillance.

So, one person, me, met another one person.  I must admit, I found myself choked up several times as he explained the technology that he has, is trying to get recognized, and used to follow the toxicity effects on the heart from the drug class of anthracyclenes.  He explained to me that with his technology, he is able, via 3D technology, be able to look at 90% of the heart, including the inner wall and its movement.  In other words, he has the ability to see damage to the heart, before it becomes too great.  In other words, there is the potential to modify or change treatments, and not only save the heart from possible permanent damage, but caught early enough, the opportunity to allow the heart to recover.

It is a lot more complicated than what I just described in the last paragraph.  But bottom line, I have found another “one person.”  One person trying to make a difference, and I believe he will.  He has the tools and the knowledge.  Now he needs the awareness and the support.  I want to be “one person” for him, to help him, which ultimately will help many cancer patients.

One person can make a difference.  One person will make a difference.

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

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