Y’all, I have the BEST news to share with you! And we could use great news, am I right?

When I made my blog post the other day and reported that my scans looked stable that was prior to the final measurement calculations that I usually get with each scan. It was just what my oncologist could see comparing the current scan to my previous scan, no radiologist report. What she could see was no major change so that’s what she told me: stable.

Well, she called me today with the final numbers: I am NED (no evidence of disease)! This is the golden unicorn we all hoped for. We have been crying happy tears off and on today. My oncologist was giddy and reminded me that this is definitely not a common state that she sees frequently.

The measurements only take into account the lungs and lymph nodes that they have been tracking since day one. The bone lesions aren’t measured in this calculation. This is because the trial uses CT scans to track the lesions. Bone lesions are seen on the scans but they aren’t super sharp or specific. We can see them but we can’t SEE them if that makes any sense at all. MRI or PET scans are much better for tracking bone lesions. So because it’s sort of an ambiguous measurement with CT scans we assume that the bone lesions aren’t growing because we don’t see any new ones. But for sure the measurable disease (lungs and lymph nodes) is so small they cannot measure disease on the CT scan. I am so happy!! And relieved. And happy. And relieved. Haha!

I don’t know how long I will be in this space but today I celebrate and I would love to celebrate with you all too. Can you tell me how you’re celebrating this rare, wonderful, lucky, blessed, grateful, joyful, heavenly grace news?

Everything else from the last post still stands. Scans every 9 weeks to track things, telehealth from here on out until things change, side effects from the oral meds, immunocompromised, BUT beyond words awesome-sauce lucky duck NED!

My one request while you read this: grab a drink or something you can indulge in. I have tried really hard to keep things as normal as possible these last few weeks, but one thing that just can’t be avoided is day drinking. Now, I am not talking about having sloppy afternoons, but a beer on a sunny day or a G&T at the sensible hour of 4pm sounds pretty much what a pandemic day calls for. No judgment here folks — it’s just one of the ways Covid-19 has changed things.

Other things have changed too. For instance, we have been eating a lot more meat than we did before the quarantine. I used to make 2-4 vegetarian dinners a week, but I have been lacking in motivation to do much cooking. It takes a lot of motivation to do a lot of things these days and cooking hasn’t been filling me with as much joy as it usually does. So instead I cook meat. It’s fast, it’s easy, no one complains. Another thing that Covid-19 has changed is the sheer amount of time my kids are on a screen each day; schoolwork is online, socializing is online, and games are online. We limit how much “outside of schoolwork” time they are online each day, but it’s so hard when all they want to do is FaceTime or send silly messages to friends that they haven’t seen in weeks. They are missing a normal part of their day being sequestered at home and their little social buckets are dry.

Covid-19 has also changed my cancer treatment plan. I went down to Boston last weekend to get my regular scans done. My hope was that the break from pembrolizumab would allow my lungs to heal and help the pneumonitis to shrink. It didn’t. The inflammation was stable. The cancer also didn’t grow. All in all good news.

I was really hoping that I would be able to jump back into my infusion schedule this week, but we have decided it’s just too risky. We know the cancer is being managed well through my oral medications since it didn’t grow over the last 9 weeks, so the focus has shifted to keeping my lungs from getting worse. Covid-19 poses a complicating factor for me because if I were to catch this virus I could have real issues with recovery since it’s extremely taxing on the lungs.

Two things really cemented my decision to discontinue the pembrolizumab. 1) I have had many more doses of immunotherapy than most people get in their lifetime. This particular drug has been used to cure other cancers and even in those curative environments, they aren’t getting as much of the drug as I had. So yay me, I am overachieving.  2) I am still on the clinical trial. This is very important to me. We know the oral drugs I am on are effective and are working. The wildcard was always the immunotherapy. I feel a duty to help find a cure and being on a clinical trial is my best tool for doing that. We need to know what the long term effects of being on this treatment line looks like, and wouldn’t it just be silly if I dropped out of the trial just to remain on the same oral drugs?

Going forward, I will continue to telehealth with my oncology team for as long as they let me. The exception to this will always be scans, which must take place at Dana Farber. I will continue with anastrozole and abemaciclib for as long as the cancer looks stable, hopefully, that is a very long time.

Thanks to everyone that has been checking in on me and my family. It’s an interesting time right now for all of us.