So, exciting news being NED, amiright? Exciting, but also terrifying. You see, everything in cancer land is ass backwards. For example, when your cancer gets worse, we call that “progression.” Progress would suggest improvement, right? Not with cancer. You’d also think that I’d breathe easier knowing the drug I’m on is working, right? Not so much. Let me use a metaphor to explain.
I’ve written in the past about how having metastatic breast cancer is like being shoved off a cliff. And I’ve also written about how hope is like a rope that kind people who just don’t get what metster life is is like will throw down to you and say “Here, climb this.” But the problem is, the higher you climb, the harder the fall. And you WILL fall. NED doesn’t mean cured. It means the cancer is too small to be seen on a scan. It’s still in there, trying to figure out how to overcome the drug I’m on and start growing again.
So, basically what’s happened is, my oncologist gave me a rope, and I trust him more than I do the good hearted friends who say “be positive, have hope,” so I’ve climbed the rope. And now here I am hanging off the edge of the cliff on this rope, not fully at the top, but high enough that I can see the view from up here, and think “holy shit that’s a long way down.”
At the top of the cliff are the researchers. And they say things like “be patient, help is coming.” But meanwhile I’m hanging here off this cliff, and frankly, my arms aren’t that strong. I don’t know how much longer I can wait. I hope those researchers realize I can’t just hang off the side of this cliff forever. Eventually I’ll fall. I don’t have 5 or 10 years to wait for a new treatment to be fully vetted. I need new things to be available when this rope snaps. Or better still, before it snaps.
So, I’m super happy I’m NED, but I’m also terrified. Because I know how slowly research is happening. It needs to move faster, not just for me, but for my friends whose ropes have already snapped.
Beth this post is spot on. I think your visual of the cliff is very powerful. And you question why progression is bad news doesn’t match the word. I also don’t know who came up with the word patient since many times I’m impatient! I’m so glad you are NED.❤️❤️❤️
Beth, I am not stage 4 and I have often felt the way you described. Being in denial hurts me more than being realistic about my situation. Don’t want to hit the ground the same way I did when I was first diagnosed. I understand you without being in your shoes. And yes we need more research so none of us, including early-stagers, would be so scared.
I am still feeling happy for you about your most recent health report. xo
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Thank you for describing it in a way those of us on the outside that are the emotional supporters can understand. I don’t know what it feels like personally and this analogy gives me a lot of insight. Thanks!
Wow! Great post! xx
Perfectly put Beth
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I also imagine you are extremely paranoid–could that sore calf you got when you walked all day be something else? Could any slight ‘twinge’ that a non-metster ignores–mean something else? I know how happy you are today–answered prayers–I just pray that some researcher out there uses grant money to discover a cure. I am allowed to say ‘cure’, right? I don’t want to be sued by a multi-million dollar company who has trademarked that word. Hugs
You are right on the money! Perfect descriptor of what we metsters go through! Xoxoxox