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A Question I've Been Getting Asked A Lot....

....when people find out I have terminal cancer is, "So, what's the prognosis?"

Okay, first of all, that's like asking "Hey Browen, when are you expected to die?"

Secondly...I don't have a good answer because I was never given one. Let me elaborate.

This cancer WILL kill me. Even if I end up with NED (no evidence of disease), I will always be Stage IV Colon Cancer. That's not to say something else couldn't kill me first. It's actually a huge concern with the end of mask mandates that those of us who are immunocompromised have been facing, is will my child bring home a cold that will kill me? Or worse, will they bring come Covid? We live in a constant state of fear that the slightest cold could end our lives we're fighting so hard to elongate, and at the same time keep some semblance of a quality of life. It's a mental fatigue unlike no other.

But I digress. This isn't a blog about mask mandates. It's about how (unless I somehow manage to get into an accident being an idiot, which my very well meaning and sweet friends are convinced I'm going to do and thus want to wrap me in bubble wrap and keep me safe from all the things) this cancer will someday be my demise, but that, no, I don't have a prognosis and I'm unlikely to have one unless things are truly looking grim.

Why is that? It's interesting because I'm in great number of colon cancer support groups and so many of the people there have received a prognosis. I seem to be in the minority, however upon meeting my GI Oncologist she said something very important to me.

She told me that I am not a number. Every single case, even if the cancer has spread to the exact same places, are completely different in how they react to treatment and in terms of me specifically? We would make a plan and take it step by step and adjust if needed.

So far we haven't needed to make any adjustments. The chemo is working. After 4 rounds all but 2 tumors in my body have shrunk. Now we're 6 rounds in and I get to have an MRI on my liver so we can see those pesky liver tumors in more detail before they really disappear.

So do we talk about the whole prognosis thing? No, because we don't need to. It's a non-issue right now. Right now the goal is to get to meet NED. I want NED to be my best friend until I'm in my nineties. (Remember, NED means no evidence of disease and is the best possible outcome).

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I get it and I’m so happy you are responding so well . I know we kinda lost touch for a while but I have been following your journey and I think you are amazing. I have achieved NED but I will never rest because my cancer is and will always be in my blood. I only get remission, every ache, pain , fever, I wonder if it is back. BU I am alive and I celebrate. My track record , well it just sucks. If one more dr says , well we never saw this before or wow you are unique, I will probably scream. I hope those pesky tumors in the liver are GONE, nasty Suckers.…

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