The woman from the Hereditary Cancer Program seemed to be choosing her words carefully, “I know,” she said, “this is not the outcome you wanted to hear.”

I laughed. Oops. I could almost feel her discomfort coming through the phone line.

Okay. Most people don’t laugh when they’re told about this. I get it. But still…

“Sorry…” I said, “…I don’t mean to sound fatalistic, but I would’ve been much more surprised if you said I didn’t have it.”

 

The ‘it’ in question is a genetic mutation called CDKN2A.  It kind of sounds like a mashed-up postal code. But that little scrambled assemblage lets researchers know that I am now part of a cohort, mostly of Dutch-descent Mennonites, that has been identified as someone with a markedly increased chance to end up with melanoma or pancreatic cancer.

Fun right?

In particular, when someone has the CDKN2A pathogenic mutation, it increases their/my odds of developing melanoma or pancreatic cancer by a considerable amount.

In other words, it’s quite a shitty thing to inherit.

 

 

I much prefer the predisposition for near-sightedness and blonde hair.

Yet.

For some reason, I find this almost comforting news. Not, of course, the dying part, but that there is finally some sort of explanation for all the cancerous deaths on my mother’s side of the family. There were ten kids in my mom’s family and only one aunt is still alive. All the rest died of cancer. Quite a few of my first cousins also died, many quite young, of cancer.

The cancer rates on my maternal side are truly quite astonishing.

 

 

 

So. Call me crazy, but this almost feels empowering.

First of all, I like that there is a specific thing to know. ‘It’ has a name, or at least a pretty fancy address. This also means my doctor knows to be very thorough in my melanoma checks. The downside is that pancreatic cancer is one of those frontier types of cancer, where little is known and screening plans are limited.

By the time you have pancreatic symptoms, it’s usually too late. That being said, this means I’m a candidate for annual ultrasounds and MRI screenings at St. Paul’s Hospital, and very importantly, I’ll be adding to the research information so that future generations might have better outcomes.

For whatever reason, I don’t feel concerned. I am healthy. I have some of the usual aches that someone approaching sixty might have, but I don’t feel like this is going to kill me next week.

Then again. It might.

We all know that once a year, each of us passes the future anniversary of our death. Admittedly, with this new information, it feels like the ink on my ‘best before’ package is a little more current.

Then again, maybe not. Who knows how life works? I could just as easily get hit by a snowplow. It is, at best, a tenuous hold we have on this thing called life. It is always best not to become complacent about this gift, so graciously bestowed upon us each morning, when we are, once again, allowed to open our eyes and take it all in.

I really do find something strangely liberating and empowering about this information. We’ve all heard the stories of terminal patients who feel like they’re finally alive and living on their own terms.

 

 

I’ve been getting to that place more and more but I think this fancy new genetic postal code feels like my final permission slip.

Which might be the other reason I laughed at the nice woman’s consoling words. That is, there’s not much to fear if you know you’re going to die. And though I might live to be a cantankerous old 90-year old…the odds of that happening have probably decreased.

However, I want to make it clear that it is not like I feel that a catastrophic cancerous death is my inevitable outcome. That is not it at all. Just because I have it does not mean I’ll die from it.

There is that whole New Age voodoo thinking that says if I dare to think or speak or write about this, it will immediately come to fruition. Sorry. I don’t buy it. I do not feel like I’m influencing this by daring to talk about it.  Instead, I think it’s a reminder that shit happens and one should be sure to live fully until one’s marker is called (see what I did there?).

There is so much that is still unknown, though they do know that if a person with this pathogenic mutation smokes, the odds of dying increase nine fold. That’s pretty darned clear.

After telling me this fun fact, the woman explained that not smoking was the first and best thing to do. “Check,” said I.

The next tip, was a healthy life style with lots of year round sunscreen and a hat. “And check.”

 

 

With those tips, she wasn’t exactly handing out any miracle cures.

Now…my mother never drank, never smoked, walked every day, ate healthy food and died of cancer at 63 years old…the same age as my sister, who died this past May of cancer as well, having smoked and done drugs almost her entire life.

To be fair, my mother, with her healthy lifestyle, had a much better quality of life prior to her diagnosis. Rhonda, on the other hand, not so much. But then, there was Rhonda’s mental illness factor as well. How does one measure and incorporate all the variables?

Not sure what the life lesson is there…maybe that life is stuffed full of irony?

 

 

 

Wait!

I know.

Live well until you die.

And, with any luck, that will be a long long time from now.

 

 

 

 

PS. If you’re related to me through my mother’s side and interested in learning more…please contact me for more information on how you can be screened for this mutation.