No Active Disease!
Just two kids in an elevator…
Yesterday was a whirlwind, but Andrew and I heard the results of last week’s PET Scan- NO ACTIVE TUMORS!
Pictured Here: Huge smiles behind the masks, celebratory Starbucks in hand, and an accessed port that did NOT receive chemotherapy, afterall. ♥️ Read on for the report!
TODAY IS THE DAY! I really can’t believe that I actually get to type these words. Such a blessing, so many answered prayers, so many months of waiting and wondering and trusting… and here we are! I’ll get right to the headlines:
The PET Scan from last week showed NO ACTIVE TUMORS ANYWHERE! 🥳️ 🙌
This confirms that the brain scar tissue is not new cancer that’s actively growing.
This means that if “Old Faithful” is still hanging out in my liver, it’s dead. It’s dormant.
The scan showed nothing new anywhere else in the body.
My favorite part: NO MORE CHEMO! (Cue dance party! Confetti! “Rocky” theme song for my victory lap!)
Chemotherapy only works on rapidly dividing cells, and that’s what cancerous tumors are. If the only tumor left in my body is dormant and no longer active, chemo wouldn’t affect it. Thus, there’s no need to pump more poison in my body now that we know for sure the liver tumor is dead. Dr. Tan gave us the green light to drop the chemo unless there’s a reason to bring it back! 😁
Dropping the chemo is such a benchmark in this journey. Finally getting the label “No Active Disease” is an amazing achievement, and such a blessing. This means we’ve made it through the battle we’ve waged for 15 months!
So I know you have some questions…
As always, metastatic breast cancer comes with a lot of fine print, footnotes, disclaimers, etc. As much as I’d like to say “We’re Out!”… we’re not. This is less defined than my first treatment season, so I’ll try to clear up any questions:
Am I “in remission?” No. 😂 That’s a label the cool kids get, but I don’t think I’m eligible for that one. Metastatic breast cancer can certainly go away, but I won’t officially be declared “cured” at any point. But that’s ok!
What’s the next best thing? What are we hoping for? Here’s the Metastatic Breast Cancer ladder, as I know it:
Step 1: Get tumors to stop growing. Any scan that shows “No Disease Progression” (or spreading) was good, even though it took me a while to accept it. Mission accomplished!
Step 2: We shoot for “No Active Disease,” which means the tumors I do have are no longer alive. Achieved!
Step 3: Our best label is “No Evidence of Disease.” (NED) That would mean that there are no tumors at all. It’s assumed that metastatic breast cancer is always floating around your body on a microscopic level, but if they can’t find it and the body is functioning well, you are considered as well as can be! This is our next goal!
But I thought you had no tumors! Why aren’t you NED today? A PET scan can only show cell activity. We infer that there are no tumors right now because there was no activity in the scan. However, in another few months we’ll do a CT scan. Those pictures actually show anatomical changes. If the tumor is still in there, it’s “evidence” of cancer. I can’t be considered “No Evidence of Disease” until it cannot be seen on the CT scan. We wait and see!
How will the liver tumor go away without chemo? That’s a great question! 😂 That brings me to my next topic…
Is treatment over? Nope! There will always be “management drug” in my treatment plan. For now, we’re dropping the chemo and keeping the immunotherapy. Baby step #1 is for the immunotherapy, Atezo, to maintain what we have right now. If new tumors reappear, chemo has to come back. (Boooo) Hopefully we won’t need it! I know people who have successfully taken Atezo for years and are still NED. I’d love that! I pray for that!
I’ll have immunotherapy via infusion (so it will look like chemo) every 2 weeks. Schedule could change over time.
Side effects of immunotherapy? Thankfully, the worst is over if chemo is over. Hallelujah! My hair will grow, my tummy will get better, my fingernails will return to normal, my immune system should bounce back. All good things!
Immunotherapy has its own side effects and risks. Dr. Tan explained that it’s not a great option long term because it creates bigger issues, like thyroid problems, type 1 diabetes, etc. Right now, that’s all we CAN do, so it’s happening.
How long has the liver tumor been inactive? You know, that remains a mystery! Could it explain why Old Faithful didn’t really shrink? Maybe. Alternatively, did chemo just keep Old Faithful in check? Maybe. We’ll never know.
Let’s talk about what this all means…
“No Active Disease” means that my treatment WORKED. “No Active Disease” means that I have IMPROVED. “No Active Disease” and no more chemotherapy means that there is HOPE and that my body is HEALING! I got the impression that my doctor was legitimately surprised and pleased with this outcome. 😂 If you’ve been following my journey from the beginning, you know that my story continues to defy the odds. I’m in a small percentage of survivors each step of the way, and God continues to take such good care of me.
It’s important to point out that God took such good care of me every step of the way. Not just this week! Always. He paved a way for me to return to school after my first rodeo of chemo/surgery/radiation. He held me close during the seizure and brain tumor chapter. He dried my tears when I packed up my classroom and jumped back into chemo. He surrounded me with treatment, love, resources, friends, and just quiet time when I wondered if I’d ever see the light at the end of the tunnel. He was there in the nausea, the hot flashes, the infections, and worries. He provided time and health for our beautiful wedding. He continues to move mountains with insurance and paperwork, and He continues to pull my heart back to Him when I think I’m falling apart. And just when I started to make peace with the idea of chemo forever…He gave me this. ♥️ It took a long, long time, but “No Active Disease” is a gift that I treasure.
There’s a beautiful song by Hillsong United that seems to express this so well:
So I will praise You on the mountain
And I will praise You when the mountain's in my way
You're the summit where my feet are
So I will praise You in the valleys all the same
No less God within the shadows
No less faithful when the night leads me astray
You're the heaven where my heart is
In the highlands and the heartache all the same - “Highlands” (Song of Ascent)
Whether in the highlands or the heartache, He’s always here and always in control. Loving us so well, and giving us more than we could ever deserve or imagine. Today, I’m in the highlands, standing on a mountain top and soaking up every ray of sunshine as far as I can see! MBC is a rocky road, and you kind of keep the car in neutral- it slides forward, backward, or nowhere at all, depending on the day. So I’ll keep that in mind, but today we CELEBRATE! 😊
Special prayers and encouragement to everyone else on an MBC journey! One day at a time! ♥️
*Want to see how it all started? Previous entries can be found at www.caringbridge.org/visit/caitlan.
