Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

A Need To Grieve


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I am going to “wing” this post.  Admittedly, other than what I studied in college, I do not have a lot of experience with grief.  Do not get me wrong, I have had plenty of opportunities over the last few years especially to grieve.  I just do not grieve.

Once you understand that “grieving” has to do with recognizing and processing a loss, you can take the steps necessary to moving through the sorrow, and moving on with your life.

As I said, there are many reasons that we grieve, and it is more than just the obvious, the death of a loved one, or someone close to us.  Grieving is about loss.  It can be sudden, or it could be expected.  I will be the first to tell anyone, I do not handle grief well at all.  No, I do not sit and weep endlessly, I am quite the opposite.  I internalize my grief.  In other words, my losses and the feelings that come with them, never go away.  I never give them the chance.  And the irony is, that the process of grieving is not about making the feelings of loss go away, or forgotten.  Quite the contrary, going through the process of grieving allows you to re-build the memories in a positive light, happier times, which, when describing the loss of a loved one, is what the deceased would want.

Grieving is not just about death.  We all have lost something other than a loved one.  As a cancer patient, I lost my sense of immortality.  I lost control of my body and life.  Loss of employment for any reason, is just that, a loss that needs to be grieved.  Relationships that end should cause a need to grieve.  As  a pet owner, I have gone through many losses of fur friends.  Time that I am unable to see my children, that is a grieveable loss.  And of course, death, exposes us to the most emotionally painful of grief.

We grieve, because we have suffered a loss that was beyond our control.  Even if we prepare for a loss, expecting it, the pain and sorrow can often be overwhelming.  There is no limit to how long a person must grieve, days, years, the rest of a lifetime.  But once we are able to move through the initial hurt of the loss, gain even just a little bit of control of our emotions, we can begin to see exactly what the loss means to ourselves.

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The above photo was posted on a former classmate’s Facebook wall, a writing by Henry Scott Holland (1847-1918), a professor at the University Of Oxford.  Very deep words expressing that the feelings of loss should only be temporary once you recognize what was lost, and what remains.  For someone like me, who internalizes his grief, I never get to this point.  And I will be the first to tell you, I know this is not healthy.  But this is how I have always been.  But because of how I handle grief, I am always there for someone else who may be suffering a loss.  And this then, is how I handle my grief.

In my 25 years of cancer survivorship, I have met thousands of other patients, not just of Hodgkin’s Lymphoma, and I know of many more, courtesy of the internet.  But my support of cancer patients does not stop at the patient themselves.  I often interact with family and friends, caregivers, and even some of their medical team.  This explains why I feel a need to grieve, sympathize, and empathize those who have passed, even if I have never met them.

When a patient, family member, friend, or caregiver reach out to me, there is a bond that is created.  Someone trusts me enough to know and understand their circumstances.  Whether or not I have any advice or counsel that I can offer, just giving someone an opportunity to speak into my ear, or across the internet can give someone hope, they are not alone.

Just a month ago, someone who had come into my life a few years ago, suddenly passed away.  I had never personally met her.  She had a sister who reached out to me, because she was concerned with health issues.  You see, the one who passed was a long term Hodgkin’s survivor like me.  And being a great sister (their family is very close to each other), the sister reached out to find help, and found me.  I spent the last few years corresponding with the sister, offering any information that might benefit her sister’s care.

Over time, it seemed as if things had calmed down.  And then, as I mentioned, a month ago, going in for what is a common and normally a routine procedure, something horrible went wrong, and she passed away.  Damage to the heart was too severe, and underestimated.  And now, the grieving hits, and it hits hard.  I remember reading the post on her wall, written by her husband, telling us that his wife had passed.

I have seen many photos of the family as well as the sisters together.  And these are very happy memories.  I admire how close they are, and the good times that they have shared.  Hopefully my friend as she reads this post, looks back at the photo pasted in this post, re-reads it again and somehow finds solace in it.

There will always be questions.  Why?  What could have been done differently?  Who missed what?  But the first step in grieving is realizing that it is okay to cry.  It is normal to remember the good times.  This is what helps you to move on, and not forget.

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.

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