N.E.D. For Me

I am so very thankful and excited to say that my PET Scan showed…NOTHING!!

That’s right, friends! The official language was, “No abnormal uptake to indicate metabolically active recurrent or metastatic disease.” This means that no cancer was actively dividing cells in my body, and all were behaving as they should! No signs of metastatic disease. 🥳️ 😍 🙌

My first question was, “Can I now say that I’m “N.E.D.?” (No Evidence of Disease) I’ve been waiting for so long to hear those words. You can read my general description of what that means in earlier posts about earlier scans. (“Miracle Story” from June or “Celebration Buns” from March) My oncologist said, '"Well, on this scan. Let’s see what our next CT shows.” 🤦‍♀️ I realize that cancer cells will always be lurking in my body, and that any scan could suddenly show “something” new. But when do I actually get to start counting up? When does my as-close-to-”cured”-as-I-can-get clock get to tick?

I’ve imagined earning this badge of N.E.D. like opening my letter from Harvard, or winning the lottery, or standing on the Olympic podium. A moment of affirmation of all our hopes and hard work, assuring me that yes, we did it! Thrivers I’ve met online can say things like, “4 years N.E.D.” I always thought that at some point your oncologist would mark the occasion. (If any MBC friends are reading this, did your doc bestow that title on you? Or did you just decide to start counting after a good scan for yourself?) The further into the conversation we got, it occurred to me that Dr. Tan was not pulling out confetti, or a shiny N.E.D. certificate. The rubric for this damn group project keeps changing. 😂 It seems we’re always either waiting for a PET or a CT to get the grade. Sooo…

I think I’m going to claim it anyway.

This is my second PET scan with no signs of active disease. (September 2022 and December 2023) I’ve had some blips and shadows on scans in between them, but they were never definitively labeled or measurable. I feel great. We dropped chemo over a year ago. By all standards, this is what we hoped for, right? I love my oncologist so much, and respect her professionalism and caution. AND…I don’t know if she’ll ever give me a definitive answer. So, with the understanding that NED does not equal “cured” or “in remission,” I’m going to start counting now! I’ll say that I’ve been NED since December 2023. 🥰️

I’m still sorting out how I feel about that, honestly. I’d be more comfortable celebrating if I’d been given permission to do so, you know? This is such an achievement, a gift, a blessing! I’ve daydreamed about throwing a party, or even just marking this new phase of life by little things like taking my name off the prayer list at church. (I’ve been on it for over 4 years now!) But…should I? I feel like I’m breaking the rules. My excitement is tempered with caution and respect for rules and procedures. #struglife Hence, no sweeping announcements on social media. I so appreciate your prayers and patience!

…and since I’ve blabbered about whether or not I deserve to say, “I’m N.E.D.” for this entire post, I just shake my head. Yes, it’s important. And yet, it doesn’t change anything. How often will I continue to seek earthly titles to define me? No label can change the healing God has already brought about in my body and in my heart. And I realize there doesn’t have to be a “before” or “after" NED. God is with me, as He always has been, in all seasons of my life. My security is in His love, not labels. My hope is in His promises, not a status. I can claim His blessings every day because I’m a child of God. …I’m so sorry for putting so much weight on this milestone, this verbiage. Isn’t it funny how our hearts will always find something, anything other than God, to find our value? Or satisfaction? He is enough, with or without shiny labels, to sustain me. And honestly, He’d be enough with or without healing. That’s what makes the healing extra special, even sweeter. What a GIFT!

So I’m quietly claiming NED on my own. I’m praising God so BIG for His healing and provision. I’m holding tight to Him, trying not to look down or let my nerves spook me. I’ve been reminded several times this week to remember all that God has done. He has sheltered and saved me from so much! Cancer, anxiety, cognitive barriers, joblessness, financial need, a broken heart, lost hopes- the list could go on and on! I keep saying, “It’s amazing what God can do in a year!” But really, it’s amazing what God can do anytime. I hope you see Him at work in your life today. I promise He is there with you. ♥️

“…we’ll declare to the next generation the praises of the Lord—
        his might and awesome deeds that he has performed.” -Psalm 78:4