The Conundrum of Co-existing with Cancer

A musing about living life with a cancer diagnosis... are we living with a permanent shadow or with T-Rex looming?

I'm about 9 months into my cancer diagnosis, and over the last few months there's definitely been a shift. I guess the immediate shock has worn off and life must go on. With the specialist saying, that despite a high WBC, he's not going to treat me unless the CLL starts to impact my quality of life, I've been kind of left hanging. I'm moving forward, but there's an ever present shadow I can sense, a shadowy companion following along behind me.

I'm certainly grateful not to be dealing with the effects chemo treatment (the only first line treatment option available currently in NZ). I'm also grateful not to be standing on the edge of a life and death precipice, which is how those first few months felt. I'm grateful to be feeling well, feeling enthusiastic and adventurous again. I'm enjoying making the most of opportunities and not being burdened by the weight of worry every day.

But under this surface of optimism, I'm kind of confused.

Not treating something that is multiplying inside you and has the potential to kill you is a very strange and unnerving feeling. I understand all the medical rational - completely. There are only so many treatment cards to play, so only table them when absolutely necessary to buy some time. Fully makes sense.

And it's not that, that I'm confused by.

My confusion lies in learning how to live with an existential threat, looming daily, but not actually doing anything that I'm impacted by... yet.

An existential threat

We took our kids to Wellington a week ago to visit my 92yr old grandmother, and while we were there we visited a Jurassic Park Lego exhibition. It was so cool and creative and we had such a fun time. We were the wild, weird ones - being chased and eaten by the dangerous dinos.

Our boys got a bit squeamish when I asked them to take a pic of Anton and I kissing under the T-Rex... was pretty funny seeing them get all awkward with their parent's pashing in public! We've entitled the picture - the last kiss.

And now I kept musing over the photo. Because, it has unintentionally captured how I feel in this new season. I'm embracing life, as passionate and purposeful as I ever was, but now there is this enormous existential threat, that is just...well...hovering. And, because it's not really tangible, I'm almost pretending that it's not really there - that it's not quite real, just a construct. I've kind of slipped back to living with mortality in the background. I sometimes think I'm living in blissful denial. But I'm not... not really.

You can see in the photo, my eyes are wide open. I'm not oblivious: the cage, which kept the death threat contained, has been unlocked. The facts are pretty hard to ignore. Just like it would be hard to ignore T-Rex, unleashed and breathing down on you.

I know the cancer is there... but for all intents and purposes, with the daily ebb and flow, the bustle of life... is it?

Just like our shadows, constant connected companions that come and go...or do they?

Sensing the conundrum?

When I check out various CLL sites and online support groups, I find many people who have lived with it for years, and advise to get on with life, just forget about it. I'm sure the adjustment to that level of confidence and sense of security comes with time. But I haven't landed there yet (remember I'm only 9 months into this).

The sudden shock of diagnosis and the fast rising white blood cells counts over the next 3 months has left me feeling suspicious and uncertain. I'm not sure if the next blood test will bite or not. I'm weary of what the results might be.

Courage, Love and Legacy

This blog is a musing, because I don't have any answers today. But I just want to share where I'm at. Because I know you're wondering.

And if you're on the same journey as me, living with a permanent shadow of a cancer diagnosis, then you too might be wondering how people ever get to that illusive shore of serenity...

Let's walk together awhile longer and see where the journey takes us.

And for now, be free to sit in the wrestling place and wonder...

What questions have you had along this journey? What confusion or conundrums have you faced?