Jun 19, 2013 - 5:12 pm
Before we begin, I just wanted to once again thank all of my friends here for their caring and compassion. The outpouring of emotional support was incredible and I felt kind of guilty rattling everybody’s cage, before I had the answers in, but don’t think I could have bit my tongue for that long anyway with those type of thoughts swirling around in my head to keep me company.
Thank you all very much for being there with me…
So, the onc walks in and asks me for my assessment of the situation…I told him it looked like new trouble, but the report wasn’t exactly definitive.
But, from what I had gathered, I said we’re looking at a cluster of new activity in the liver in the hepatic dome - that measures 3.2 cm x 1.7cm….that wasn’t there on the last set of scans.
I wanted to look at the scans this time….he asked me what happened with the MRI and I told him what had happened and that I tried to rescue the day by having the protocol changed to all CT – as it was better than nothing.
We looked at the new cluster of spots and sure enough, they are visible and you can see the change between the two scans as we had them up side-by-side. The rising CEA was his trigger for concern here.
CEA for me seems to be valid for liver – and worthless when it comes to lungs…so the rise (while not sky high) was disconcerting for both of us.
But, he told me that still it was not definitive at what we were seeing…although he highly suspects – as do I – as many of you might as well…
So, I said, well then the next step must be more testing, right?
Perhaps a PET, I suggested?
And short of an MRI, he agreed with this approach….so, now we’re scheduled for a PET scan next Wednesday first thing in the morning. I asked him if the difference between any SUV values would be indicative of anything?
Like, if it was 2.8 or 7.2 as examples…..would this determine anything? He told me it would be either – Or……either a high value or no value…not much in between.
Next, I asked him the next most logical question…is the area treatable without chemo?
I asked him about TACE as an option? He said, yes they do chemoembolization there at my facility (good news)…..but felt, that the response was low there and not appropriate for my situation.
We talked about Sir Spheres and Thereapheres…I can get those at my place too…
I asked about RFA again….and he said we’ve got to be very careful with my liver…I’ve got stage I fibrosis and have had all along….it’s the reason that liver resection got ruled out after they originally opened me up…..and had to switch over to RFA on the fly.
But, while RFA remains a possibility, we’d have to revisit it to see if I would qualify….he told me the quality of my liver might be further impaired by a procedure like this – this time.
I believe he said my right lobe looked pretty good, but the left one….he’s not sure how I would deal with that potentially.
So, I moved next to Cyberknife – what about that I said? I had that done on the liver too and locally, it was a temporary success….would later recur….
And he said, Yes, this would probably be one of the proposed methods to deal with it. And it would be SBRT radiation…..stereotactic.
I took a minute to talk with him about presacral regions and T11 and T12 calcifications. And I said this is where the radiation was done on me right? (9-years ago).
And that it’s part of the price we pay for trying to live…what I’ve said all along…the ramifications and fallouts from our treatments continue to dog and haunt us every year we make it.
I told him I had been having increasing pain in the lower back and could no longer sleep in on weekends….the pain literally drives me out of bed, it hurts so badly.
And I told him about my hips and the associated pain there….I’ve got Avascular Necrosis, which is joint death of the hips due to an inadequate amount of blood supply to those joints. The primary reason being radiation – followed by chemo.
I knew about the AVN, but got a confirm about how our bodies continue to change from the treatments we endure – and why we suffer so, if we are the fortunate ones to keep going.
Radiation – the gift that keeps on giving – all of your dying days….
He said we’d deal with this new activity first – and then look at the back plan….somewhere I’m going to have to get that addressed…it is getting rather ***bersome and there are days I can barely climb into my clothes to get ready for work.
Well, that’s about it, Gang…
PET next week…..he’ll call if he sees something….otherwise, the plan is to watch and wait a couple more months….and then we look at it then.
I’m okay with that…..I know that if that kind of time made a real difference for my situation, I’d already be dead…that’s the confidence that I've had to develop. We can't always be rushing headlong into things nilly and willy...with so many years in the fight, comes some degree of sage that we develop...and of course, we hope that we were right in our judgment.
So, for now, I’ll just suck it up and wait to do the next test…..we might end up doing an MRI, but I stated it would have to be open if it were going to be that long.
Wish I had more news to tell you….
We seem to live our lives in a constant state of Flux – and that’s what makes it so hard to live in the moment – and to try and plan for a future that you can’t see – but genuinely hope for.
I’ve tried to break free from the gravity of cancer that keeps me so weighted down….and yet, I find that it keeps a perpetual stranglehold on me, as it keeps me tethered tightly on a string for its own personal amusement.
Actually, I’m giving cancer too much credit…..the truth is that cancer couldn’t care one iota…now if only I could get to that state of mind myself.
We’ll see what happens next…and thank you all ever so much – for everything!