Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “September, 2015”

Celebrating Josh


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I am sad right now.  My sorrow deepened by yet another long term survivor, recently passing away from a return of the same cancer that led Josh into my life, and other health complications.  But it is because of how he lived his life as a survivor, my sadness is oddly not as intense as is normally the case.

The story goes back just before the turn of the millennium, around late 1997 I think.  I was trying to extend my outreach of cancer support to patients beyond my local efforts.  Long before Facebook, there was a “listserve” for those who had battled Hodgkin’s Disease (us long-termers still refer to the politically incorrect terminology).   A mother on this listserve, was looking for support.  Her son, in his mid-20’s was battling Hodgkin’s.  She signed her posts, “Lynn, mom to Josh”.

The impression that I got from Lynn, that Josh could be very stubborn.  He also gave me the impression that he was very private, so I rarely heard many details from Lynn.  Conversations via email typically  revolved around pending testing, and of course, anniversaries of remission, and spontaneous symptoms.  But I only heard from his mother.

That changed in 2000.  With only one question from Lynn, “why on Earth would you want to visit Bakersfield, California?”, I made plans to do just that.  I was planning a weekend trip to the west coast to see a professional football game and thought I would just drop south into Bakersfield and meet my very first long-distance, long term cancer survivor.

Josh

There was no doubt what Josh meant to his mother.  Lynn and I spent countless hours exchanging emails about Josh’s conditions and concerns.  And when I finally arrived in Bakersfield, clearly we knew that we only had a limited amount of time during my visit, and Lynn was going to make it count.

But the visit was not going to be all about cancer.  Not if Josh had any say in it.  Besides the rock band Korn originating from Bakersfield, another popular tourist stop, was Buck Owens Crystal Palace.  Yes, for those of us old enough, the same Buck Owens of the “Hee Haw” country variety television show.

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The museum/restaurant was filled with all kinds of merchandise that belonged to Buck Owens.  And for a music history nut like me, I was in a place that ranked among Graceland, the Music Experience, or even the Rock N Roll Hall Of Fame.  We all dined at the palace.  There was not talk about cancer.  We enjoyed a great meal, had a few beers.  And Josh showed me, what I have never been able to do in my life, he lived his life the way that he wanted to do it, following his battle with Hodgkin’s.

When we got back to his house, we had some other minor chit chat, about some of his collections that he kept.  But there was never any discussion about cancer.  This is the way that I knew of, that he wanted it to be.  I would hear about his brothers, but no cancer.  That was how I knew Josh, and from the one and only time that I got to meet and spend time with him.  And yes, Lynn, as hard as it was to believe, I enjoyed my visit to Bakersfield.

His mother Lynn, or as I nicknamed her a long time ago, “mother Lynn”, as I often found myself relying on her as a voice of reason for any number of issues that I may have been dealing with, remain good friends.  Lynn is not the first parent I know, that has faced losing a child.  There is an expression that goes something like “no parent should ever have to bury a child.”

Lynn, my friend, I have no concept of the loss you feel right now.  I can only imagine and try to understand.  But if there is one thing I do know, that you never once, stopped fighting for Josh, even when Josh did not want to fight.  I knew from every conversation that we had, how much you loved not just Josh, but all of your children (and grandchildren).

And following that visit, our circle of survivors would extend even further, all across the country, and the Earth, and perhaps, our meeting may have been the beginning of “Paul’s Heart”.  Our connection showed how important, and needed, contact with other survivors, family, and caregivers was to get through each and every day.

Josh, you are missed my friend.  I am thankful that I got to meet you.  And I am thankful for the friend in your mom, that I got to know because of you.

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Words Of Understanding


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Personally speaking, I have been through a lot over the last 27 years.  While there are many issues of my life that I have chosen to make public, for the benefit of others, there are many, many other issues which I keep private.  I am like this for several reasons:  pride, protection of others, to inspire, to not instill panic or paranoia.  Simply put, since my diagnosis, I have had good days, and I have had bad days.

But being involved in the world of cancer as much as I am, I have learned so much.  I have learned about progress for newer cancer patients, which will some day mean a cure for all cancers.  But I have also learned of so many who struggle with survival.  Surviving cancer, or any serious illness of event in a life, is not just as simple as “just getting over it.”  I am a fairly positive minded person, but I cringe every time I hear someone either tell me, or suggest to someone to “just get over it.”

“Just get over it.”  Four of the most hurtful, selfish words someone can say to a person who is experiencing a level of pain, on that person can possibly know.  While I may have an understanding, given from my own experiences, I have know idea the level of the pain or the struggle being dealt with by an individual, even if the person explains it to me.

One of our list members on one of my Facebook pages is having one of those moments.  And it is quite serious.  I can recognize the pain, the frustration, the futility.  I can understand when a person asks, “how much more?”  The response to the original post was as is expected.  Nothing but 100% support by so many who have experienced similar sentiments.  Every member offered encouragement that most in the “outside” could not comprehend.

Then one of our members responded with a poem, which I believe echoes what many of us long term cancer survivors feel:

“This is living life after Hodgkin’s.
We will be sad.
And unhappy.
And have terrible pain.
And misery.
And thats ok. And “normal”.
And deserves respect and deserves to be heard.
The fun will happen too.
But we won’t deceive ourselves.
Or so I think, at the moment.”

  • Dolly

The majority of cancer patients often make a statement that they will not let cancer define them.  But there is a difference between “defining” and “breaking”.

Thank you Dolly for sharing these words of  understanding.

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.

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