Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

Another Fallen Angel


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Once again, a sad goodbye is said, to another survivor of Hodgkin’s Lymphoma, the same cancer I faced in 1988.  And like me, over the years, faced with dealing with late effects caused by the treatments that saved her life from cancer.

Like so many that I had come to know, I first “met” Davina on a Facebook page for Hodgkin’s survivors facing late effects.  This page is a critical tool for us survivors because where medicine fails us in surveillance and care, the members of this group provide information, experience, guidance, and support.  Myself, I had been on there for years already, as well as other internet support groups.

For the most part, Davina was able to manage her issues, mainly struggling with an undiagnosed shortness of breath.  Many times this issue can be traced to either cardiac or pulmonary causes.  But for Davina, there had been no answers.

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A few years ago, I got to meet Davina in person with another fellow survivor.  We were attending an event for writers who contributed stories to a program called “Visible Ink”, written by patients and survivors, published by Memorial Sloan Kettering Cancer Center.  Davina was so impressed with the program, that she inquired about it.  I explained to her that there is a special “release” that comes from writing, a kind of therapy.  And for those of us that struggle with dealing with the physical issues we were dealing with, and the emotional, often times, simply venting through a story helped in ways professionals could not.

I recall one of the first stories Davina wrote, it was not even cancer related.  But it was about her life as a little girl dealing with teasing she received for a condition with her sight when she was younger.  It had scarred her so badly, that this still bothered her late in life.  In actuality, I almost felt like at times, this issue was worse than dealing with the cancer and its late effects, though clearly we knew it was not.

But she wrote several pieces after that.  And she thanked me for encouraging her to write.  Davina truly enjoyed it, though she was clearly her own worst critic.

Over the last year however, her health started getting worse.  The late developing side effects got more difficult to deal with.  But the whole while, Davina continued to offer support to everyone in our Hodgkin’s society.  And she not only offered support in relation to cancer or treatment side effects.  She also offered support for other issues that many of us were going through.  No matter how much she struggled, she was selfless in support of us all.  And I will never forget that about her.

She passed away this past weekend.  Another to survive cancer, only to succumb to the side effects caused by the treatment that saved her life.

I have experienced this many times over my survivorship.  Davina is now the second friend in the last few months to have left us this way.  As I tell others, no matter how often this happens, it never gets easier to deal with.

Davina, you will be missed.

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.”

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