Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

A Memory From 30 Years Ago I Will Not Forget


The last quarter of 1988 was one of the worst times of my life, though I really should not set the bar based on that.  30 years ago, I was facing cancer, Hodgkin’s Lymphoma.  I spent the last two months of the year, undergoing tests to determine just how bad my cancer was.  However starting 1989, was not going to be any better, because I was going to have to undergo one final diagnostic procedure, and it was going to be a big one, and recovery time was going to be an issue.  Up until this time, proudly, I missed very little time from work.  But this procedure was going to be much more extreme.  My memories of this time period are just as vivid today as they were back then.

30 years ago, actually a week ago, the Philadelphia Eagles visited the Chicago Bears in a playoff game, nicknamed “the Fog Bowl,” because of the strange weather phenomena that took over the stadium as fog engulfed and dropped into the stadium, making it nearly impossible for us to watch the game, let alone, the players to actually see what was happening on the field.  Today, 30 years later, the Philadelphia Eagles are again travelling to Chicago to play the Bears again in another playoff game, though no obscene weather is expected this afternoon.  But who knows?  No one expected that bizarre weather back then.

For the majority of my life, up until 1988, I was fairly healthy, only one minor surgery when I was six years old.  And already in 1988 I had received many new surgical scars, just to determine what stage of Hodgkin’s I was dealing with.  Now for those dealing with Hodgkin’s today, please, please appreciate the fact that you do not have to undergo this procedure, the laparotomy, to stage the cancer.  You get the PET scan.

What was especially frustrating for me, because I was more than aware of the concept of wanting to get this treated sooner than later, especially with my wedding coming up in five months, but if this was going to be the end all and determining factor of treatment options, why not just have skipped all of the other testing, and go right for this?  Of course, looking back, I can understand why now, but back then, it was just so frustrating.

For many of my readers who are long term survivors, this is deja vu for you, and for those who do not understand what exactly the laparotomy is, here you go:

There would be several biopsies performed through the 8″ incision on my abdomen.  My liver, some lymph nodes, and with Hodgkin’s being a cancer of the lymph system, the decision was made to remove my spleen.  Back then, the spleen was often deemed “unimportant”, able to live without, and to a degree, we can, I do, but it comes at a cost when it comes to fighting infections, and today, science knows this, and spleen removal is not done as often anymore because of those risks.

Up until this point, I had only one lymph node that tested positive for Hodgkin’s.  I was currently at stage 1.  Other biopsies and tests and blood work showed nothing.  Just as trying to play football in fog, getting the proper staging for me was just as difficult to do.  But just as there was a winner and a loser in that football game, my spleen was going to determine my outcome.

My spleen came back from pathology, fully involved with Hodgkin’s.  My staging changed from stage 1 to stage 3b (which meant there were symptoms with the staging.  The full diagnosis, staging, labeling, was “Hodgkin’s Disease, 3bNS”.  The NS stood for “nodular sclerosing” which is one of the types of Hodgkin’s classifying its aggressiveness, determining treatment options.

There was one thing I had to get through in the immediate moment however, THE PAIN!!!!!!  I had never had a major surgery like this before.  And now having been cut from my chest, just below my belly button, my insides torn apart to allow the biopsies, the pain was unimaginable.

As I continue through this anniversary journey, my memories are quite clear of what happened and how.

And though I am glad this scar is just that, a memory, it is still there to remind me of where I came from, and a reminder to all the new patients dealing with this diagnosis today of the progress that has been made.

And just as my body has healed from that surgery back 30 years ago, I am routing for the Eagles to be passed their memory of the Fog Bowl, and have my fingers crossed for a victory today to avenge that loss 30 years ago.

Merry Christmas To All


 

I do not recall in any kind of detail, the thoughts that went through my mind thirty years ago.  My fiance was insisting in my going to Christmas Eve service that evening in spite of me wanting to have anything to do with God at all.  I felt that my minister had spurned me, because he was too busy (of course he was, it was the Christmas season).  But I was really angry.  I had everything going for me.  I was getting married in five months.  And instead, I was facing something that had the possibility of killing me.

I did attend services that evening, candlelight.  Admittedly, it is one of the more beautiful services to attend.  But as the night wore on, my anger turned to tears, as best as I could to hide them from everyone around me.  No one else had known yet was I was dealing with.  But I found myself finally, perhaps not as tough as I thought I was, scared even.

Over the decades, I have gotten to enjoy so many more Christmas holidays.  And none could be more meaningful than those celebrated with my two daughters.

However, just as I experienced thirty years ago, the holidays are not always so joyous because for one reason or another someone may not be able to be with us, or perhaps is no longer with us.  Soldiers protecting us overseas or stationed somewhere other than close to home.  Distance apart from loved ones.  Tragedies.

I miss so many at this time of year, family and friends.  Perhaps none so more deeply than my daughters and my father.  While I will get to see my children during the holiday, it was Christmas-time that I saw the side of my father that I never got to see as a child, though in the role of “pappy.”  Not caring for the holiday at all because of what happened to my stepmother, he went out of his way, above and beyond to make sure his house was ready for when my daughters came to visit.  Finally at an age where they can understand what had happened, back then, all they saw was a joyful “pappy” and were all to willing to play with all the interactive  decorations that he put on display, knowing he would play with them.

I do miss my dad, especially right now.  I miss being with my children.  And I definitely miss that interaction between the three of them.  And I know I am not alone in having feelings like this, which I know can make this time of year very difficult for so many.

But I truly hope, that somehow, you can find a way, make a pleasant memory of this holiday.

To everyone reading this, I wish you a very Merry Christmas (and happy holidays to those who do not celebrate Christmas but rather celebrate the holiday season in other ways).

30 Birthdays… 30 Years Of Hodgkin’s Lymphoma


Continuing on with my 30th anniversary posts of my diagnosis of Hodgkin’s Lymphoma, I will not lie, my birthday thirty years ago really sucked.  When asked what I wanted, only one thing, and it could not be bought… a cure.  And though thirty years of remission has happened, it came at a price to my health with long term side effects that developed from the treatments I received.  For many of us long-termers, we often find ourselves wondering, was it worth it?  Would I do it again?

My answer is yes.  Reflecting back on things that have happened over 30 birthdays since I was diagnosed, not only would not have happened without the treatments, but I have to even give the experience of having had cancer, to making me who I am today and giving me the blessings I have experienced.

First, I have met well over a thousand other cancer survivors whom we have all shared our stories with.  Each on as inspirational as the next.

For a time, my career involved working in medical research, not only dealing with one of the chemo drugs I was given as a patient, but other cancer studies as well.

I regained my love to write, and have contributed articles as well as stories of cancer issues and survivor issues.  In fact, one of my stories was actually performed live!!

You can actually find the story performed, “My Dad Was Just Like Me” on Youtube.

Doing the unthinkable, I took on politics briefly, campaigning twice for school board.  It was a local election, which provided enough excitement for me, and it was the success of the first came, literally by a less than a few hundred votes short, that gave me the hope to run again.  It was an exhausting but very rewarding experience.  Unfortunately, it also did give me a behind the scenes look at politics, which I am not a fan of.

But the most important events in my life, of my thirty years of survivorship, came when I adopted my daughters.  They are my reason for living.

They are the reason, when my doctors tell me, they want to make sure that I see them graduate, perhaps get married, and maybe even have grandchildren, I will do my part as well.  And to do that, means that I will obviously be celebrating many more birthdays, and many more milestones.

But I would be remiss, if I did not mention, I do miss so many who have passed on, not just from this horrible disease or its effects, but everyone.  I wish you could be with me today.

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