QoL FastBlast!: What I've Learned from Facing Certain Death

Nothing is certain... not even our mortality.

This post is more like a primer on a series of posts I have coming up than a complete thought all at once.

That’s because a recent visit to my neuro oncologist (NO) has created a whole new existential crisis for me.

At this appointment, my doc and I reviewed my latest MRI scans. And let me tell you that things got heavy and weird.

As well as I’ve been doing over the past few years, I was very aware that the statistics for surviving with what I have aren’t great. In fact, they’re terrible. But that didn’t prepare me for what I encountered at this latest appointment. Weeks later, I’m still struggling to process things.

Me and my long time “ride or die” Chris shortly before we learned the information that changed EVERYTHING

So what happened? The scans themselves (MRIs take hundreds upon hundreds of images in a session) weren’t that interesting. In fact, the images were nearly identical to most of my scans from the last few years.

In short: I’m stable which is about as good as you can get when you have what I have.

Great, right? Not so fast, buddy.

You see, in this sameness lies a deeper problem. As good as MRIs are, they can’t differentiate between what’s a tumor and what isn’t (except for edema aka brain swelling which has fluctuated for me through the years).

I also asked my doc about some WHO statistics from 2021 that I came across. Essentially folks with oddball tumors like mine are associated with longer survival rates… but when they go, it happens fast. The average survival time is 74 months. With that arriving this September for me, I’ve naturally been concerned about my impending exit from this mortal coil.

My medical team tried to alleviate my concerns by telling me that statistics are just an average and that I could very well live well past that time frame since I already have a history of being a medical outlier. Neither my NO nor PA saw me dying for at least a couple years even in the worst of circumstances.

But in this attempt to calm me, they let loose a bombshell.

Remember when I wrote above about MRIs not being able to discern stuff in the brain well? That very well could be the case for me. In fact, the masses of concern they’ve been pointing to ever since I started this journey may not even be a tumor.

Wait… what?

They explained that it could be scar tissue left behind from treatments actually working. The tell-tale sign is that the mass in my brain is virtually the same from scan to scan while tumors tend to shift slightly in shape. But it’s still tricky to be sure and cancer could very much be there on a cellular level.

This scar tissue also comes with issues that I still need to deal with (that I’ve addressed in many previous posts) but imminent death isn’t really high on the list. And with new treatments getting FDA approval very much on the horizon that could be used should any lingering cancer cells decide to start growing again, it’s difficult to even seriously call me “terminal”.

Like I wrote earlier: terrible.

Now you may be wondering why I’m having this reaction to seeming good news. Keep in mind that I’m not being entirely serious in the hypothetical clutching of pearls, but I’m being a little serious. It’s a paradigm shift in how I think about myself and how others view me.

At least I can still take solace in my many physical deficits and general rage over feeling fairly meh most days. I’m definitely not cured or in remission, but things still aren’t great.

But they aren’t completely horrible either

And now I have an additional level of cancer guilt to deal with as I deal with a wave of cancer friends taking a downturn while I seemingly get an upgrade in condition. I’m preparing myself for people wondering if I ever really had cancer all along. Will “they” take away my already generally useless cancer card? How will I explain why I’m on disability and can’t work? Will people take me less seriously when I whine about my problems? What good am I in being “patient advocate” if I’m not dying?

And perhaps most importantly, why can’t I just take the win and be happy? Cancer has broken me.

But more on all of this is in the weeks and months ahead.To quote the great Molly Marco, I’m still not shutting up about cancer.