Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “September 7, 2014”

Happy Grandparent’s Day! A Grandparent That Made A Difference To Me

Conversations about cancer “back in the day”, like during the 50’s, 60’s, and 70’s were quite rare (I was only around for two of those decades – trick statement, you can figure out easily which one).  Cancer back then, nearly always carried a negative stigma, with many thinking cancer was contagious, which of course is one of the biggest myths with contracting anything from someone being treated for cancer with any of the drugs residual effects a close second.  No, sadly, the only time I really heard cancer was when someone had died from it.

In the Summer of 1986, an employment opportunity came up for me which caused me to take leave from college, quite stupidly with only one semester to go from graduating.  But I was young and stupid, and was driven by an opportunity to make a lot of money – what young and stupid person would not have wanted that?  It took me to the Pocono area of Wilkes Barre, Pennsylvania, a very friendly little area, and one with a very reasonable cost of living.  But to get started, I needed some help.

My grandmother, everyone called her “Grandma” whether you were her actual grandchild lived to help others.  This is all I knew of her, and to this day I live my life the same way that she taught me – take care of others and they will take care of you in your time of need.  She believed it, and lived it.  I needed to secure an apartment, but with no money to do so, she loaned it to me.  Now that by itself might not make such an interesting story.  What grandparent would not help their grandchild?

I had just moved into my apartment, about a month after my grandmother helped me secure the apartment.  The telephone rang.  It was my mother informing me that my grandmother’s surgery for breast cancer went well.  (Cue the screeching train wreck sound!).  Now you have to understand, my family had always been notorious for keeping things to themselves (prior to the days of my cancer).  We did not talk about emotions, and we most certainly did not talk about bad things like cancer.  The only thing I remember about that phone call was the anger at my grandmother finding out that she had cancer, and instead of worrying about herself, she instead put me up in an apartment.  But that is how she was.

I immediately drove back home to visit with my grandmother.  But after the two hour drive, I had a lot of time to settle my emotions, to get back in check that this was how my grandmother was.  The anger of why she would take care of my need before taking care of her own, had changed to the priority of getting her well.  I loved my grandfather, her husband, though I only knew him briefly before he passed.  But my grandmother was my life.

Somehow she expected me to show up in her hospital room.  I recall having a tear in my eye, being brushed back by the “it’ll be alright” smile on my grandmother’s face.  At that moment, she said, “at least I will be able to wear some of your shirts during my recovery” making light of an unpleasant situation as well as making me aware that she had gone through a mastectomy.  And of course, no grandson wants to talk boobies with his grandmother, but let us just say, she was serious, she was going to be able to fit into my shirts now, needing a button down shirt for her recovery and of course my frame up there did not stand out like hers.

Of course, then it was back to the usual silence.  I had never really heard any further about my grandmother’s cancer.  I honestly do not know any chemo, if any, she received.

But in November of 1988, I found myself in need of an oncologist for myself as I had just been diagnosed with Hodgkin’s Lymphoma.  And since I knew absolutely no one else who had ever taken on cancer, and beaten cancer, I could not have asked for a better inspiration than my grandmother.  After all, she was a couple of years into her recovery, and clearly the doctor who saved her life, would be the one that I challenged to save my life.

Long story short, that positive approach I believe made the difference in not only my longevity, but in my ability to deal with treatments and eventually reach remission.  She stood by me the entire way, and yes, we did not really discuss anything about the journey.  We did not have to.  We just knew.

Ten years later, at the age of 83, I lost my grandmother to another round of cancer, this time ovarian.  Unlike the time when she was diagnosed with her breast cancer, my experience as a cancer patient myself made me more sensitive to the things going on with this battle.  But no matter my experience, it was no match for my grandmother.  The one thing she was great at, was protecting those that she loved from harm, whether it was physical or emotional.  The words of the surgeon made me very suspicious when he told us that he had gotten all the cancer, but then went on to describe his plans for my grandmother with preventative treatment.  The length and amount of treatment he described to me, made no sense as preventative, but rather actual treatment.  Something was clearly wrong.  But to this day, we will never know.  The day before my grandmother was supposed to start chemo, she passed away.  She knew this day was coming, and succeeded in keeping us all from being sad, watching the days go by, wondering if that was going to be the last day, instead, enjoying the life we had with her.

I sat across from her in her home the day before she passed.  She had just gotten her hair cut very short for us to get used to when her hair would start falling out from the chemo.  But I noticed her treatment books (how to deal with them) had not been opened.  And although I am jumping ahead, unbeknownst to her sister and roommate of over forty years, she had already picked out clothing for her to be buried in, even my aunt was unaware.  But as I sat with my grandmother, I looked over at her, clearly her thoughts were else where.  But in my final conversation with her…

“what’s the matter grandma?”

“I just want to get this over with.”

We just sat there in silence for a few minutes.  Then I got up and left to run some errands.  The next day I was at church running a function for the youth group I was in charge of.  A telephone call had come that my grandmother had been taken to the hospital, fluid was filling her lungs.  In defiance, I changed my priority to want to be by her side, instead of my responsibilities to the youth group, and this should have been the thing to do.  I was told, “your grandmother wants you to finish what you are doing.  She will be okay.  She isn’t going anywhere.”  Two hours later, I got another phone call.

I miss you so much.

Question – How Do You Get Through Scans?

The most frequent question that I get asked, is “how do you get through scans?”  The question can pertain to other testing as well, because either way, an enormous amount of anxiety is created around testing time.  And whether it is diagnostic, follow up, or anniversary, the anxiety is often times unbearable.  And it took me a long time to master controlling it.  But it can be done, simply, by keeping things in perspective.  Keeping in mind what you have in your control, and what you want your end result to be.  Like I said, it sounds simple, and it is.  I just never had anyone explain it to me which is why it took me longer to figure out.

First, for those whose anxiety is at the diagnostic stage, there are two things initially you have to keep in mind.  Reality check, and you have to accept, there is the likelihood that you are going to end up with a diagnosis of cancer.  So you have two ends, a positive and a negative.  This is going to be the most difficult anxiety to learn to control, but it can be done.  The first thing you keep in mind, the scan or test being done, is nothing to get through.  And if your result is a negative one (that means you are not getting diagnosed with cancer – confusing I know, but this is one time that you want the negative result), you move on.  But if you are unfortunately told the results are positive, you end up at the next cross road.  Do you want to live, or give in?  I believe the majority of the people who are diagnosed with cancer want to live.  So, if that is the case, then you are going to fight it.

Like I said, it sound simple, and it is.  You already have two steps into the cancer process knowing what could potentially lie ahead of you.  You already have it in your mind that you are “prepared for the worst, and hope for the best.”  Once the testing is done, it is out of your hands whether you have the results tomorrow, or next week.

But another anxiety exists when you are half-way through treatments, and that half-way scan gets ordered.  By now, the anxiety is not of the scan itself, but rather the result.  And again, it can be handled the same way.  Once the scan is completed, it is out of your hands.  And the thinking is the same way.  You are either going to continue to fight as the results show positive direction in your treatments (there we go with the play on positive and negative again), but again, if the results show treatment not being effective, then you know you have to try something different.  Again, when you know what your options are going to be ahead of time, you have the better chance of reducing the anxiety.

And the final anxiety comes not necessarily from the last treatment or final scan following treatments, but rather anniversaries.  As a cancer survivor, we all look forward to that anniversary that we are in remission.  The first year is the worst.  The last thing we want to hear after being cancer free for a year, is to hear the words relapse.  But guess what, go into the scans just as I have suggested the other tests.  If the scan is negative, see you next year.  And if the result is positive for a relapse, then you have to fight again.  You have come too far.  But as each year goes by, this anniversary anxiety fades.  The belief being that the longer you are in remission, the less likely of recurrence.  And I believe that to be true in most cases.  Before you know it, year 2 and year 3 pass by, and then we hit that magical year number five which is what society deems us officially survivors of cancer – in other words, we met their life expectancy.

I am in remission now over twenty four years.  I do not have the anxiety I had heading into my 5th anniversary or even my 10th.  As each year it has gone by with less and less.  I realize number twenty five is a major milestone for a cancer survivor.  And I hope to continue to go well beyond that.  I know a sixty year survivor of Hodgkin’s Lymphoma, and I want to be like him.

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