You’re never really prepared..

The mind is a complicated thing, I think no matter how much you can say or hear something, until it’s really confirmed or infront of you, it doesn’t quite sink in.

That’s how this week has felt; since I’ve had surgery to debulk the mass amount of my tumors, we have always known that there’s left over disease. We have known since I was diagnosed with metastatic pheochromocytoma cancer that there’s only management options, that I was going to get surgery, and if my tumors were not stubborn and lit up with radioactive MIBG, that I would be eligible for a special form of radiation thereafter, and I would get that treatment as the next step, and once that was no longer an option we would move onto whatever option is left at that time.

Yes, we knew. However, when you’re really in the situation, laying down in that machine, watching the little television of your insides, and hoping to God that nothing lights up on the screen, you just for some reason abandon your sense of reality and start to cling onto some forbidden hope, and it all gets taken away the moment you see the familiar light, the light that suddenly brings you back to reality, crushes your little hope, forces you back to the knowing phase where you have to adapt to not only what you knew, but somehow prepare for the worsening news that it could be perhaps even worse than the reality you were not yet ready to adjust to.

This is life with cancer.

I had this procedure done a little while back after surgery, it was decided that they would repeat it to have a more defined look closer to the actual radiation. We never really went into much detail at that time, I didn’t ask for more detail with the results because sometimes it can be a little less accurate when performed close to surgery with mets, so I guess the repeated scan could have gone either way, better or worse.

I went for my radioactive iodine injection one day, it takes a few days for the tumors to absorb the uptake, then you go back and have the scan a few days later. Essentially if nothing lights up, it’s good, the more that lights up, not good.

The scan ordinarily takes about an hour to an hour and a half, it is done in increments of roughly 25 minutes, different views of the body. It started at my head and was scanning down my body. The very first thing we saw was a very large light on the screen, possibly brighter than anything we had seen in the past. It was so bright that the technician came in and stopped that particular increment, and explained the nuclear medicine Doctor wanted to get a picture of the abdomen. Weird, since the abdomen would have been included in this segment. I guess he wanted a closer view, so that was fine, it would just be a little longer. So we did the abdomen picture, and she returned to tell me I would have to be given a diuretic, which is basically an injection that makes you pee a bunch of times to flush out your kidney. (This is not my first MIBG, in fact it’s my fourth or fifth, and this has never happened)

The bright light on the screen was apparently my kidney, so so flushing out my system would make sure it wasn’t just a build up of urine or something, and confirm it was a tumor and not just some weird abnormality. So I urinated a lot over the next few minutes, and drank a lot of water, and urinated some more, I was very determined to flush that light off the screen 😂

I returned to the scan, hoping so bad it was just a mistake, that all of my urinating would magically solve the problem. There it was again, that bright light.

Don’t get me wrong, I knew the scan was going to have a little light, I knew I was going to have a little bit of left over disease, I knew after surgery, the problem is… The tumors I had after my surgery were on my liver. This bright light…. was on my kidney.

See the problem?

How did that get there? It wasn’t there a few weeks ago. It’s still a mystery 🤔 as I do not have my actual results yet. If it is that, it’s spread again, in this short amount of time, even with that massive surgery I underwent.

The complicated mind is also a beautiful thing, because no matter what … you have to find the good in every situation.

There is still good to be found here, the fact that my tumors are responsive to MIBG, although a harsh treatment, it’s still a treatment. I could be in the same situation, with the same aggressive metastatic pheochromocytoma cancer, and unable to be treated with this highly advanced treatment.

And now… We wait, for whatever news is to come, I am sort of thankful for the fact that we were prepared a little by some of this news, this way we will not be completely blind sided.

I can only hope that it won’t be worse, because there is ALWAYS room for hope.

Pheo VS Fabulous 💗✨

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