Paul's Heart

Life As A Dad, And A Survivor

Another Candle Burns

Again, I am mourning.  Yesterday, I was informed of another long term survivor of Hodgkin’s Lymphoma in my circle had passed away.  And I want to clarify what I mean as a “long term” survivor, as I do not want any of my recent followers or readers to believe that this is a potential fate for them.  Because in reality, as much as they may be annoyed by this fact, cancer patients today, now have a protocol in place, to be followed up for the rest of their lives for any possible late effects, to catch them in their beginning stages before there is a chance to develop into something major, like I have written in the past.

This is always tough news to receive amongst my fellow survivors.  Because those of us who have been diagnosed with issues related to our treatments 20, 30, 40 years or more ago, until recently, had been forgotten.  And only upon learning our medical status, did we only have a chance for ourselves to finally breath, knowing that we were not crazy with the way we felt or that our bodies felt.

I belong to many groups related to Hodgkin’s Lymphoma and long term survivorship.  Each group has a large membership based in the hundreds to the thousands, spanning the globe.  And what we get from each other, we cannot get anywhere else, including from our own caregivers, understanding and knowledge.  But this fraternity comes at a price, emotional attachment.  And that price gets paid, when we receive word that another survivor has passed away.

Yes, it can and does get overwhelming.  Some of my fellow survivors must step aside, because of the overwhelming feelings, not just for the loss, but out of fear what they may face one day.

As survivors, we can do one of three things.

We can just walk away, and live the best life we can, oblivious to the ills tormenting our body.  When our time comes, it comes.  What we do not know, cannot hurt us, and in the end, we will never know.  But boy life will have been great.

We can know what is wrong with our bodies, and do what we can as it happens, but not spend any time dealing with the issues while they are manageable.  Because that would mean us thinking about our fate, and that is just no way to go through life.  Instead, “okay, dealt with that.  Time to move on.  Oh, another crisis, deal with it, and move on.” And so on.  The only problem with that, is if we wait too long to deal with an issue, it becomes to late or at best too major.

And the third option, the one that I prefer, is to accept what has been done to me, to give me nearly thirty years of survivorship.  I have had four major events in my life since my HD days, all caught “last minute”, because I was not followed up properly.  I was living life, travelling, playing ball, and spending time with my kids.  But those first two options have not been an option for me over the last eleven years.  You see, I need these issues dealt with before they become too extreme.  My late effects doctor told me, our goal is to not only witness my daughters graduate, possibly get married, and maybe even give me grandchildren.  But there is only one way that this can happen.  And it goes beyond taking care of myself, knowing the late effect issues, and having them taken care of.

It also takes the many people I know, who have been there, done that.  We all rely on each other as survivors to help us get through each health event, and also to be a shoulder when we say goodbye to another.  As time goes on, this happens a lot.  And it does not get easier, because we grow so close to each other.

And so, I light another candle today, for another Hodgkin’s survivor.  You will be missed.

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