New York

12.18.25
​​I am so thankful the oncologist had openings so we were able to get an appointment at MSK where they are doing the clinical trial. I booked a flight solo (bc Mike has to stay back with the kids) but my girlfriend lives out in the city and graciously said I can stay with her for a few nights. I am trying to make it into a fun trip with some girl time and maybe a show or some nice meals out. Not to mention it is a magical time to be in the city and all the decorations will be beautiful. It is hard to have to go to a big appointment solo and definitely makes me appreciate that Mike is able to come with me to almost all of my appointments in Cali.

I have a ton of questions for the oncologist.

On Thursday I had my apt with the Dr. It is a Bot/Bal trial for immunotherapy and in order to be a candidate you have to have positive ctDNA and no detectable tumors on an mri or ct scan. He also said i would get the drug every 2 weeks but the first few rounds he would like me to stay local (so about a month) in order to monitor me closely for side effects. The most common side effects are a rash, horrible diarrhea, and/or inflammation. He said they are taking 27 patients w/o measurable disease (like me) and 27 with measurable disease.

After the appointment he sent me to do a signatera ctdna blood test. These tests take about 4 weeks to get the results back. The test that I have been taking with Dr. Kasi are Tempus. And it is possible to be positive on one and not the other. From my understanding signatera won’t detect ctdna until it is over 100 when my Tempus detected it at 23- so there is a possibility I will still have a negative signatera and have to repeat it in 4-6 weeks. He also said my hemoglobin needs to be over 9 and mine is 9.1- SO I definitely need to keep an eye on that.

But the plan is- that if the signatera is positive I will have to do another ct scan and mri (within 4 weeks of getting that positive) and it will have to be clear of tumors.

Once all of those steps are checked off I’ll meet with him for another apt and start the trial within 4 weeks of getting the positive signatera.

The time away from home is a lot to have to think about, and then the flights and hotels will not be covered so i am going to work on connecting with my social worker to see if there are any other avenues of funding. For the trial the hospital will cover the drug but there is a chance I will be responsible for the cost of them administering the drug to me if insurance doesn’t cover it.

My apt ran a little late so I wasn’t able to catch a show but I got to walk around to all the fun tourist spots and grab a decaf coffee. I also rode the subway by myself which I was very proud of! It was really intimidating but after doing it a few times I loved how convenient it was!

Then once my friend Jacklyn got off work we met up and grabbed dinner and got to catch up so more. I am so thankful she opened up her space to me with such short notice and I had a blast visiting with her.

The next day was raining so we didn’t get to do everything we wanted before catching my flight but we slept in and went out for a coffee before she had to head back home to work. I went out and did some shopping, grabbed lunch and then headed back to her apt before catching an uber to the airport. There was a TON of traffic so it took longer than anticipated and I felt like I was cutting it close to get on my flight- but there was hardly anyone in the security line so I made it to my gate with plenty of time before boarding.