Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Defining “Me”


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There is an expression that is common among cancer patients and survivors.  “I don’t want cancer to define who I am.”  I have heard this stated many times over my survivorship of over 26 years.  And my initial thoughts pretty much echoed those sentiments.  Many simply want to move on with their life as if cancer never happened.  And certainly, none of us want to be referred to as “someone who had cancer.”  But lately, I have been wondering, is the expression perhaps being spoken incorrectly?  Is it possible that we simply do not want it to “control” who we are?  Perhaps we do not want it to “change” us.  So maybe it is not so much as “defining” us, as much as it is “forming” us.

I have decided that I am going to take the perspective of cancer, not necessarily defining me, but rather, reminding me who I am, what matters in life, and what people really need to think of, when they meet me, or see me.

Until my diagnosis back in 1988 (almost 28 years ago this month), to say I was under the radar with even my own self-recognition would be an understatement.  Nothing I was doing stood out, going to college, dated, listening to music.  There was nothing really to indicate that life was never anything more than just going day to day.

But the diagnosis of Hodgkin’s Lymphoma kind of changed me, it woke me up.  My only knowledge of cancer at that time, was that cancer killed.  I was going to have to dig deep, to a place inside that I was never aware that I had.  I was going to be challenged physically and emotionally not just for months, but for every waking moment of every day.  I was going to have to deal with daily side effects that were not only painful, stressful, but exhausting.  Just the mere thought of the “tasting” the chemo injection was enough to make me vomit.  This is called “anticipatory nauseas”.  I was able to “taste” this particular drug 24 hours before it was even given to me.

I did what I had to do to get through that time.  The simplest thing I did was to “minimize” the length of time.  Instead of 8 months of chemo, it was 16 injections of which only 8 made me nauseous for a total of 3 hours each time.  Therefore in my head, I was convinced I would only deal with these issues for 24 hours.  Sounds much shorter than 8 months.

As each month went by, it did get harder and harder.  But as I got through one cycle, I knew I could get through the next cycle.  And so forth until I was half way done, and then knowing I got half way through, I could get through the next half and then it became about how many more to go, after having gone through so many before.

A definition of me, pointed out by having cancer, was that I did have what it took to get through this horrible experience.  It showed that if something was so important for me to get through, no matter what I was put through, I was going to achieve it.  It proved I was never going to let anything be taken from me.

This mentality would benefit me many times in life after that.  I battled an employer for discriminating against me, just because I had cancer.  I fought for disability rights with another employer after it was discovered that I was dealing with late effects from the treatments that cured me of my cancer.  Accommodations needed to be made to make it possible for me to continue to work, and I knew that was my right.   I fought for that right.  And yes, just like the days  went through my treatments, there were bad days.  My boss would make things difficult for not only me, but as if to put pressure on me, he would often make it difficult on my co-workers who would then turn their frustrations on me, in hopes of them putting pressure on me to back down.

Well, just as with cancer, I did not back down.  And my remaining years with that employer were quite peaceful concerning my health issues.

And there are other examples in my life, post cancer, that I demonstrate this same mentality and determination.

So, if by having had cancer, if reminding me of what I always had inside of me to face any challenge in life, then yes, perhaps cancer has defined me.  And that is a good thing.

That Moment When…


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The following was something that I wrote on another page.  But the response I got from it, told me that it was worth sharing.  Because no matter the challenge you are facing, this could apply to you.

 

“That moment when the pendulum begins to swing the other way.

That moment when you are proven correct and true.

That moment when you realize your greatest fear could have actually happened.

That moment that fear was silenced.

That moment you truly appreciate everyone who at the very least, encouraged you to never give up.

That moment that you recognize prayers and positive thoughts make a difference.

That moment of awareness, you are still who you have always been.

That moment you remember, you have what it takes to challenge, endure, and survive.”

“Hello Dolly… Well, Hello, Dolly”


“Hello Dolly,……well, hello, Dolly
It’s so nice to have you back where you belong
You’re lookin’ swell, Dolly…….I can tell, Dolly
You’re still glowin’…you’re still crowin’…you’re still goin’ strong”

– Louis Armstrong, from the musical, “Hello Dolly”

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There is no doubt this is how Dolly was being greeted this morning.  This is how I knew Dolly… well, for most of the time anyway.  Like me, Dolly was a long term cancer survivor of Lymphoma.  Like me, she suffered late side effects, and eventually another battle with cancer, as if the first time around was not enough for one person to go through.

I never met Dolly, whose actual picture would eventually appear on her Facebook page, because of the droves of other survivors who would have to physically meet, the wonderful spirit, who, when faced with one challenge after another, would always manage to muster a smile, offer encouragement, all the while, maintaining order in her life.  And there were plenty who would get to meet this gem of a spirit.  Unfortunately, I would never get the chance to actually meet Dolly, but we exchanged emails and texts, to discuss certain admin issues with the support pages that she created on Facebook for those of us who struggle emotionally and physically with the late effects from the treatments that cured us of our cancer.

Dolly had a “travelling companion” besides her husband Dave, a doll named “Nelly”.  Kind of like “Flat Stanley” in schools, Nelly was eventually adopted by another survivor, after it became clear, Dolly would no longer be able to travel, and so, pictures of Nelly’s adventures would appear, giving many of us, Dolly included, even a slight smile, because each picture would remind us of Dolly.

I am sure that I am not the only one, but Dolly also took time to help others with other issues or struggles in their lives besides survival.  That is just who she was.  Even up until days ago, she did all she could to keep in touch with us.

I have met hundreds, if not over a thousand cancer survivors over my survivorship.  And I can tell you, the rush that comes over us, when we meet someone who “gets it”.  But when we choose to meet someone in our situations, it also sets us up for the possibility of heartbreak.  Because as a survivor of cancer, with late effects to deal with, things can change just like that.  But those who got the opportunity to meet Dolly in person, neither was disappointed.  I know many of the faces she got to meet, and that meeting always meant something so special to each and every one of you, and especially Dolly.

I have known, and still know many people I draw inspiration from in my survival, but Dolly has been the second person, who I consider very influencial in my survivorship, that I have never personally met.  The other, was a woman names Linda, who urged me to not only advocated for cancer patients, but to become aware of the world of late effects for cancer patients who would go on to live long lives, and need help.  It is just at one point, I never thought I would be one of them.

I am sad for the passing of my friend.  I am certain it is even harder for those who knew her best.  The testimonies being given on her Facebook page, and replies to the post by her husband speak volumes.  For those reading this that are on those Facebook pages, that is what this group is for, to help us deal with the grief and sorrow, and help each other to survive.

The photo below is the cover from Dolly’s Facebook page.  This was definitely Dolly.

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