Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “September, 2015”

Big Things Are Coming


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I must apologize.  I am clearly not going to get to my goal of “a post a day” for Lymphoma month.  For some unfortunate reasons, and for two very good reasons.

September has been an unusually difficult month for me emotionally, both from a personal level, and professional level.  I will not go into the personal level, but as a caregiver and friend to so many in the world of cancer, and a survivor myself, the passing of anyone, or the grief experienced by a caregiver that has shared experiences with me, does hit me hard.  But the fact is, this was the life that I chose when I decided that I wanted to “give back” to cancer.  I cannot donate blood, or body organs, so instead I offer support and advocacy.  I am blessed to have “Paul’s Heart” as a tool to do this task.

In recent weeks, two fellow long term survivors passed away, due to complications most likely related to their treatments so long ago, and perhaps other issues as well.  And it was not so much the patient that I shared time with, as much as their caregivers, and I share my grief in their losses, because I know how much they hurt.

But I am also working on two big projects.  One is a bitter-sweet project, which all I will divulge for now, I hope to have published on “Paul’s Heart” in the next few weeks.  It is exciting news for current and future patients, of not just Hodgkin’s Disease, but possibly other cancers as well.  It is bitter sweet, because the story is being written at the expense of so many who have passed or struggled with their survivorship, looking for answers, many not finding any.

The other project I am working on, is taking “Paul’s Heart” to Youtube or some other form of media.  I am not a big fan of the camera, so this is going to be a challenge for me.

So, I will be back real soon, with some more posts.  I appreciate your patients, and support.

 

Paul

Everyone Can Chill Without A Pill


There has been a lot of discussion on many of my FB feeds, fellow patients and survivors experiencing struggles with anxiety, depression, and stress.  And today’s post does not have to be just about cancer patients and survivors, it is really about everyone.  We all deal with it.

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First, I will be the first one to say “no” to prescriptions to assist with stress and anxiety.  And I have my reasons that go beyond an industry that just cares about profit over patient.  Unless there is something physiological at issue, then the prescription method does nothing to solve the problem, it only masks the problem.  And if you actually listen to the commercials or read the magazine ads, the potential side effects can be startling.

I wrote last week about making the decision for psychotherapy.  And I actually like this option, because the therapist that I had been seeing, did not prescribe drugs.  She had a PH. D in psychiatry, but she knew how to handle the many emotional issues I had as a cancer survivor, without prescribing any drugs.  She was also instrumental in teaching me how to deal with daily stresses on top of my survivor issues.

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I have made no secret either, I am 100% in support of medicinal marijuana usage.  There is no debate to the benefits that it provides to everyone suffering either physically or emotionally.  It is my hope that in the near future, this debate ends once and for all.  Smoking and alcohol and prescription drugs all cause more harm and are all legal, than any possible damage caused by someone using weed medically.

But I do want to show that there are even more alternatives to learning to alleviate stress and anxiety and depression.  Some come with ease, and some take practice, time, and routine.

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The first tool that I use to relax and unwind, and am actually doing it now while I am writing (I love Pandora), costs absolutely nothing unless you are going to see a nationally known popular band.  Music is available to us 24 hours a day, and other than purchasing some songs off of ITunes, we can listen to it for free, any time that we want.  Every minute of my chemo treatments, and during my radiation treatments, I had ear buds on.

In fact, on a recent drive,  a song came on the radio that actually threw me right back to 1989 during my treatments.

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A very popular song, and controversial video, Madonna’s “Like A Prayer” was heard nearly every drive I made for my treatments.  Over the course of my treatments, I heard thousands of songs, but I definitely credit the ability that music had to “take me away”, even just mentally from the cruel things I had to go through, just to survive.

Today, I listen to music, I sing to music, and am learning new ways to appreciate music, all of which cost nothing.  I can sit and listen to a local band that I follow and enjoy, or I can sing at a local establishment via karaoke.  It literally costs nothing to enjoy something that makes you feel good.

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Bottom line, and I firmly believe, and again, as long as it is nothing chemically of the body, we all possess the power to change our thinking.  And I am not talking about new age beliefs either, and there is nothing wrong with those.  But the simple act of something we do, when altered, has the ability to change our moods and it costs nothing.  By altering our breathing, we change the oxygen going to our brains.  Not to mention, in concentrating on our breathing, we are distracting ourselves from the stress or anxiety of what was in the front of our thoughts.  And it takes practice, but has been scientifically proven, change your breathing, and you change your body’s reactions.  As an example, the exercise I use daily, I sit with my posture straight and arms relaxed at my sides(with some softer music), eyes closed, breathing in through my nose, slowly to a count of 4, and then exhale through my mouth, even more slowly for a count of 5.  I do this ten times every instance, and additionally if needed.  You can try any method of breathing.  It may sound funny, but it does work.

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And finally, something we all take for granted, and costs nothing, exercise.  Clearly exercise makes us feel better.  And you do not have to be a gym rat to get this feeling.  Yoga, a simple walk or bike ride if you are able, all possess the ability to release stress, and reduce anxiety.  Exercise takes as little effort or as much effort as you wish, but the result is the same.  A healthier body not just physically, but emotionally.

Like I said, earlier, I am not saying that prescriptions are not necessary, and I do believe that medicinal marijuana should be a legal option, but there are so many ways to help relax our minds.  And once we have a clearer head, we can actually sit back and look at the things that are causing us distress, anxiety, and even pain, and then deal with them.  But if all we do is throw a pill at something to mask the “pain”, then nothing is solved and all we do is rely on that pill.

Another Needless Tragedy


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The news just came across my Facebook feed.  Another cancer patient has lost his life, due to side effects from a drug that was supposed to save his life.

Now let me state first, I believe 100% in chemotherapy.  Without it, death from cancer is almost a certainty.  And while the drug did what it was intended to, the side effects, and how they were handled by medicine, are what led to his passing.

If there are two times that I get pissed off as a cancer survivor, it is when a long term survivor passes without getting the proper care necessary to handle our unique conditions due to damage caused by extreme treatments decades ago.  The other, is when a current patient survives their treatments only to succumb to side effects and the lack of sufficient follow-up care, and also the proper handling of the crisis due to lack of education or experience.  Another young man has lost his life.  Another young wife is now a widow.

You should be pissed off too, whether you are a cancer patient or survivor, or not.

There is no reason whatsoever, in this day and age, that when medicine knows the potential for a side effect, even if it happens less than .001% of the time, that one time that it does happen is one too many.  This young man survived his cancer, but when he fell ill from the treatments, the response to his care, gave him exactly the opposite of what only a few doctors know not to do, and the result is a tragic loss for yet another family.

Please listen to me, chemo and radiation cure cancer.  They really do.  They are not pleasant to go through, but to leave untreated, is almost certainly not going to end well.  But more than just a handful of doctors need to have the knowledge of what not to give a patient who has been given a drug or treatment that affects a particular body organ.

I am open and willing to use “Paul’s Heart” to get this message out.  Tell me your story and I will publish it here.  I will share it on “Paul’s Heart” Facebook page.  After dealing with late effects myself for over seven years, we are no closer to doctors having the knowledge they need, or perhaps even the protocol to use.  We as patients, survivors, and caregivers need to take this on ourselves.

I want to help.

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