Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “January 19, 2013”

Why Me?

(Thank you for another good topic sent to me to write about.)

Why me?  Maybe the question should be why not me?

I spent only one evening on the first question when I found out that I had cancer.  It is like spilling grape juice on a white carpet.  You can either stand there and stare at the deepening stain or you can get right to work cleaning it up.  I worked very hard to rid that cancer from my body.  I had no choice.  A stain in the carpet, you can at least replace the carpet when it did not come clean.  My life would not have that opportunity.  I could not worry about how or why the juice was spilled, I had to clean it up, now.  There was no length of time to ask “why”, I had to start treatments, now.

That is not to say that I left myself off the hook.  It just took me a lot longer to get there.  In a short number of years following the end of my treatments, the question that would haunt me, and do so repeatedly, was why not me?  I had gotten through my treatments of course with the short term side effects, but only one would show any kind of permanence to it, the hair loss from the radiated area.  Within a couple years of treatments, I would find out that also my thyroid had been compromised from the radiation, and chemotherapy left me infertile.

But in 1997, I met a group called the American Cancer On-line Resources web site, .  I went on to the link for long term survivors because that is what I wanted to be, a long term survivor.  I was around seven years out, so hopefully that qualified me.  It did not take long for me to realize the web site was not what I thought it was going to be.  Yes, the people here were long term survivors, but they were dealing with so many horrible and severe issues that they were blaming their cancer treatments.  I did not stay long on the site because I did not feel that I belonged in that arena.  But something made me sign back on again.

I began to meet people at least over the internet who had gone through similar experiences with even the same diagnosis and staging as me.   But they were at a stage now, where they were either dealing with another cancer, heart issues, muscular issues, bone related concerns, and so on.  It was hard for me to relate because I was not experiencing those issues.

Then I met one particular list member who to this day, is one of the most important survivor that I have ever met.  For privacy reasons, I will call her Tina, and if she reads this, she knows I will talking about her.  It was over fifteen years ago when I first heard her struggles.  Tina had gone through treatment for Hodgkin’s Disease, just as I had.  But her treatment was done in a hospital network up in New York.  My treatments were done in Allentown.  She had been treated the year before me.  But there was a huge difference between one year, and several hundred miles.  The amount of radiation that she was exposed to was double what I had been, which was 4 times the lifetime limit.  Our chemos were similar.  By the time I had met her, she had already had another cancer (thyroid) and over two dozen surgeries.

Why did she have to go through so much?  Why not me?  Tina was not the only one.  I personally met dozens more long term survivors, some had the same staging, same treatment, different treatment, and most all had different issues they were dealing with.  But why them and not me?

I have often wondered about the three other patients who were treated with me in the oncology suite.  I never met them or even knew their names.  I only know that I opted for additional preventive chemo, and they obviously had not, evidenced by their absence.  I did find out at the time that two of them did have to have their chemo adjusted for their low blood count levels.  Some how, I took 8 full dose complete cycles.

But along with the people going through Hodgkin’s, or other cancers, patients who relapsed, patients who lossed their battle, or other long term survivors, I forever asked, “why them?  Why not me?  The relapse patients and my friends who passed away either from their cancer or secondary issues often left me with empty and hurting feelings.  I relied on them for hope and inspiration.  In spite of what they were going through, they were still living a long time, much longer than cancer patients were supposed to.  And since I had no serious issues at the time, I counted on that.  Why them?  Why not me?

Before I go any further, I must state, as I always do, times change.  Everyone’s bodies are different not only in physical being, but how they react.  Geography, schooling of the doctor, attitiude, diet, sleep, and many more factors all play into how well you do with treatments.  Then of course, there is progress.  That is something we often take for granted.  We think that it takes forever for new things to be discovered, when in reality, new treatments are discovered nearly every day.  If the treatments work better, and are less toxic, and produce less side effects, the patient will get those treatments, and the former treatments will become obsolete or at least last resort like those that were used on me.  The same was said to me decades ago, by other survivors who came before me.

Like I said earlier, I do not spend a lot of time asking “why me?”  But around the time that I met the survivors I now know today, I did begin to ask, “why not me?”  Why were others who were treated around the time I was treated developing such side severe side effects and I am not?  Why are people who were treated with the same modes of radiation and chemo in bad physical condition and I am not?  Why does Tina have to repeatedly go through life arrest and I do not?  Why them and not me?

Here comes another one of those “yeah, but…” disclaimers.  Back as late as the mid 90’s, cancer survivors still were not expected to surpass five years statistically, in spite of the fact that millions of cancer patients were doing just that.  But once it was realized, protocol was developed and the need was understood, to follow up cancer patients, even if completed with treatments.  There is still some discussion as to which doctor should be doing this, your primary care doctor or your oncologist, but now a cancer patient is followed up, forever.  And as cancer patients we know, the earlier something is caught, the better the chance of survival.  And by the continued follow-up care, any secondary cancers or issues that develop will be caught earlier than the critical care that was needed to prevent what would have been my fatal heart attack.

There is a lot to miss, if you spend too much time asking “why me?” or even “why not me?”  Just like the time passes if you stared at the expanding, wet, purple spot of grape juice still sitting on your white carpet.

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