JIM BUTTON,
TELLING TALES.

Pseudo-Progression

The recovery from the two recent surgeries has not been easy. I still have a very sore neck and back, which somehow I cannot help but feel is tied to this whole abdominal mess. But the real challenge has been from the ongoing pancreatic pain. The usual challenges are occurring, pain following ingestion of food, occasional sharp pain in numerous spots and of course discomfort all the time.

I have been doing well to manage it and really hope the pancreatic adventure is from a stent issue, or from the irritation from the two surgeries. It is possible this past round was extra irritating and I just need to be gentle and let time do it's work. That's the best case scenario.

The worst case scenario is that the Nivulomab is causing the pancreatitis, and if this is the case my fear is that I am going to be taken off of the immunotherapy till the pancreas calms down.

And that would not be good.

Actually the two elements at this point that can take me off of the therapy are pancreatitis or weight loss. And at the moment I am balancing both.

I'm skinny.

If I eat then the pancreas gets angry. And of course if I don't eat the weight drops. I'm presently balancing a fairly protein heavy diet right now and reducing fats which should help both sides...but every once in a while I just need to eat more and well, pain ensues.

But I'll figure it out as we go along as I know good things will come along eventually...and as I mentioned in my last post it has been dark as of late. So proactive positivity is being manufactured daily.

The most recent positivity ride being pseudo-progression. Let me tell you about it as it's a fairly new phenomenon in the medical oncology world.

When I was in the Peter Lougheed post surgery for the bile duct I recall the surgeon outlining the results of my X-Ray and my CT Scan. Unfortunately I was heavily sedated so I didn't recall all the details...but what I did hear, and what stayed with me was "the tumours have grown in your lungs, pancreas...and he may have said other spots but I had already tuned him out.

The news was terrible and I have been digesting and trying to sew silk out of a pigs ear with that information.

And it hasn't been easy. What had been easy was to begin accepting the news as just another step in the projected destination that cancer wants to take me. 

But that's not the direction I want this to go so I've been adjusting the direction every chance I can. And on Wednesday when I was at the Oncologists office I found the hope I was looking for. He basically told me that research has indicated that it's not a good idea to take CT Scans prematurely (before three or four months) as the results quite often show increased tumour sizes. 

And many times these increased tumours are actually the immune system fighting the cancer cells and causing the inflammation. 

The increased size gives you a sense of pseudo-progression - the idea that the tumours are bigger than they actually are. 

Now that gives me hope that I can leverage. The immune system is doing its job, has latched on to the tumours and is slowly but surely convincing them that they should move out.

My planned scan is May 11th...should be enough time for the cancer to realize it's time get off the bar stool and either dance or leave.

Notice how Pseudo really helped out Phil and the band when they activated it!

PS the you know the Brits, they just spell things differently. They say Sussudio, we say Pseudo.

 

 

Recliner Session #5

Darkest Hour