I have so much to tell you! Buckle up buttercup.

First, surgery went great, and I recovered quickly with no issues. My incisions are almost completely healed.

My mom and I went to Nashville the 15th & 16th to meet with the PI of the trial, Dr. Melissa Johnson. She was great and went over the basics then had me meet Beth, the clinical trial coordinator. She had more details regarding logistics and the trial schedule each week. For the first 4 weeks, we’ll go weekly, then every 2 weeks, then every 4 weeks. Some trips will require an overnight stay and some we can fly in and out the same day.

Next, NGS (next generation sequencing) FINALLY came back Friday but my dr was out of town and I was told it would take days to get the report uploaded to my portal. Why bother telling me it’s in?

So Wednesday, (when my doctor was returning to the office) I sent a message begging them to send me the report. This is the detailed analysis of my tissue’s DNA and RNA to tell us why my treatment stopped working and what is likely to work best moving forward. My onc called to say it showed S1986F as my resistance mechanism and that NVL-520 will be a good option. That’s the Nuvalent trial I’ve been accepted into, so YAY! This is great news and we seem to be on the right path.

I had my CT and my brain MRI last week. Thankfully, my brain remains “unremarkable” but not only have the tumors in my abdomen grown but my lung tumors have decided they needed to grow too. Not great news. My last chemo was 4/24/23 and even though it probably wasn’t doing much to control the cancer, it’s been a little stressful without it. I feel like things are growing like a wildfire and I’m anxious to start a new drug. I also took my last targeted therapy pill today. I’ve been on it for 10 years and I have mixed emotions about letting it go.

I got the call earlier this week with a date to do more screening – an EKG, labs, and an eye exam. So we will be flying to Nashville on Monday June 5th at 6am for an 8:45 appointment. Then they submit those results to the sponsor, wait for final approval, THEN I should be taking my first pill of the new drug on Thursday the 8th. It will be a LOOONG day of labs every few hours. I will also have to do labs Friday, 24 hours after I’ve taken the first pill. So mom and I will be there Monday – Friday this trip. I’m so thankful she is able to go with me and keep me distracted and help me absorb it all. We plan on laying around the pool for a few days in between. And of course, eating yummy food.

We just went through the dates for the next 3 weeks and booked all our flights. Sarah Cannon books the hotel for us so that’s nice. It’s a lot! But I’m so happy things are finally happening. It took 5 weeks from the 1st day I contacted them to get all my records sent, reviewed, and accepted and I’m told that’s fast. I was literally emailing every few days to keep things on track. How does someone that’s sicker than me, or not as savvy, even deal with this shit?

I will keep you posted on the events of next week. Thank you all for your love and support.

Please pray, chant, dance, or send good vibes my way. This drug needs to give me at least 10 more years on this earth.