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And Now We Wait

I’ve been struggling (once again) to articulate how I’m feeling since my last set of scans. I’ve probably re-typed this post three different times and I still can’t quite figure out what to say. I think that’s because the reality is, I’m stuck in a waiting game and there isn’t much of an “update” -- at least not yet.

Let me backup for a hot second. In the beginning of August, I had another round of scans. I was coming off of my two year NED celebration (pics below) and riding an incredible high. I’ve had stable scans for nearly two years and I felt like I was finally starting to believe the imaging - maybe I really am “cured” as Dr. B. likes to say.

Enter: a change in my brain MRI.

This time around for my scans, there was a subtle change in the tumor in my brain. Since radiation and treatment, the tumor itself never dissolved entirely. It’s remained a tiny 4mm mass that we believe is scar tissue as it’s been of my tumors that has been stable the longest. This time around, the MRI showed more prominence in that tumor - now measuring 7mm. A very small and marginal difference but we all know there isn’t a ton of space in your brain for extra things - especially things that are potentially growing.

Thank goodness I met with my PA before reading the radiologist’s report because “concerning for progression of metastatic disease” was enough to freak me the f*ck out. I legit had nightmares for next two nights after reading that. Renee (my PA) informed me that she had been in contact with my neuro-oncologist (Dr. P.) and she truly believes that this is radiation induced. Essentially, Dr. P. believes there is some sort of necrosis happening and has reassured me that it’s totally normal. Turns out, decaying scar tissue can show up 5-6 years after radiation.

The tricky thing is that this is a spot in my brain. And without a tissue sample (aka brain surgery) there is no way of totally knowing what this is. It’s likely one of three things: 1) decaying scar tissue 2) some sort of error in imaging, or 3) active disease progression. But for now, we’re just supposed to wait. I have a follow up brain MRI before my next set of scans to see how it’s looking and we’re going to measure blood volume to see if that’ll help us determine anything.

Best case scenario? I get back in the MRI tube in September and the tumor (scar tissue?) is back to what it was and measures ~4mm. This would indicate I had some post-radiation inflammation and all is good and we continue to keep a close eye on it. Worst case scenario? It continues to grow or change and I’ll likely have to have further discussions about taking it out -- especially if it’s decaying scar tissue. This is where I enter the land of "what ifs" and I have so many questions.

So, that’s where I’m at. It’s all a little scary to be totally honest, and I’m unsure of what to do. I trust my medical team implicitly but I don't trust my body at all. Last time I had tumors everywhere, I had no idea. I know that’s the entire point of getting scanned as often as I do, but it’s a weird feeling to not be able to rely on my body to tell me when something isn’t quite right.

Here's a comparison picture of the little guy (should we name him?). The left side is from August and the right side is from May.

Because I’m me and I’ll never end a post with all the negative thoughts, here are some of the silver linings that I’ve been finding while I sat with this news for the last few weeks:

  • Mayo doesn’t seem to be in a super rush to figure out what this is, so I shouldn’t be either. They’ve proven in the past that they can move insanely quickly so this is a sign of their level of concern.

  • There are no new lesions in my brain (or elsewhere for that matter) and that is really, really good news.

  • Renee said that my scans were “clear, clear and probably clear” and I’m hanging on to the word “probably.”

  • If I have to get surgery, they can just shave off my colored hairs and I’ll just grow them back again ;)

I'll leave you with some photos of my NED celebration. I celebrated with some fresh ink!


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