It was so warm, you guys! The locals were all like “Yeah, its been cold down here too.” And I’m all “Girl, I’m wearing flip flops, and it was sleeting in Nashville when we left.” We saw the sun briefly as we were boarding our plane, and otherwise lots of clouds to protect us from coming back with a tan and making you all jealous. We stood in the ocean and listened to the joy of the waves and allowed God to refresh our souls. I closed me eyes and listened to the sounds of the wind and the waves, memorizing their calming ebb and flow to take me back there when times are chaotic. It was amazing to be able to experience The Lord in such a tangible way in this moment of uncertainty. Thank you, God for a trial at the beach.
We had a good appointment with Dr. Wilky today! We talked about the science of the treatment, the logistics, the effects, the costs, the hoops, and the meds. Our time spent with her was very productive and we left with all of our questions answered. Everything went very smoothly the whole trip; no problems with flights, amazing hotel, great dinner, sand in the toes, good night’s sleep. Your prayers for all those little things that I don’t think to pray for are so appreciated!
So here’s what we learned.
Based on my history and presentation, she thinks that I would be the perfect candidate for this study! We will have to do some initial screening tests once the trial opens to confirm that I meet all of the criteria, but so far so good! This trial is designed for ASPS (my cancer) patients, but is also open to other sarcoma patients as well. She explained that ASPS is most likely of the sarcomas to respond to this treatment based on how it survives and how the drugs work. Awesome.
The cool science behind what is happening here: My cancer is the result of a translocation between two chromosomes that happened once upon a time in my body for reasons we don’t understand. This results in a Dennis the Menace protein that causes other normal proteins to be expressed when they aren’t supposed to. So Dennis takes proteins that do important things at normal levels and makes way more of them than I need (Like a little bit of cookie dough dip is okay, but two batches of it will make you gain 10 pounds in a week. True story.) which is part of what gives the tumors the blood supply they need to survive. The pill I will be taking blocks that overproduction of the normal protein by Dennis the Menace protein. And then the immunotherapy will crank up the Helper T Cells to start an immune reaction against the cancer. Very cool, very smart. I failed to mention last time that I JUST finished teaching immunology in my anatomy class this week and I had JUST talked about immunotherapy that week. Isn’t that bonkers?! And also, I LOVE immunology. Don Sanders let me teach immunology to my OWN anatomy class when I was a student in college because I loved it so much. And my Biology capstone project was about Helper T Cells (shout out to Steve Moore, Ben Bruner, and Amber Hug). So you can only imagine how stoked I am to be starting immunotherapy!
The trial is still getting geared up and won’t open for another two weeks. I will be the FIRST patient to enroll on this study!! At first I will need to go down for initial labs, imaging (CT, echo, brain MRI), and a biopsy. If you were following along in 2013, you might remember that I had a traumatic experience when they tried to biopsy the tumor in my heart and (thankfully) didn’t get a sample of the tumor. It was a risky procedure and one that I was not eager to repeat. But now there are new tumors that are VERY easy to access in my skeletal muscle. They are so superficial that I can easily feel them now that I know that they’re there, and I feel confident that any dummy with a needle can get a good sample. So I know its crazy to say, but I am SO thankful that there are these new masses that they can easily biopsy!
After the first intake, assuming we qualify, we will be going to Miami once per week for the first 3 months.
I laughed at her several times when she told us. Not laughed until I cried, just regular laughed (that’s an important distinction for those who know me well).
We thought it was going to be once every 3 weeks and were wondering how we were going to manage THAT. Well, once every 3 weeks is going to be a piece of cake once we’ve been going once per week! Two appointments in a row will be only for labs and a physical exam, then the third one will be for the pembro (immunotherapy) infusion. So 2 super fast appointments, then one regular appointment. My guess is that this schedule will start in the middle of March. We’ve been brainstorming several different ways to make this work. At this moment we are waiting for the trial to open in about 2 weeks. At that point we will simply await further instructions from the clinical trial team.
All in all it was a great trip and a good consult visit with Dr. Wilky. I’ve been predicting that my sadness would start around this past Sunday, and sure enough on Saturday night I started being sad. At this point in my long cancer story, its not a crying sad, but a withdrawn, grumpy, fearful kind of sad. That feeling has persisted through the weekend and on in to today as well. We were both nervous this morning and did a lot of quiet getting ready, quiet driving, quiet sitting, and quiet waiting. I started feeling sick as the appointment was starting, and then it hit in full force for about an hour after the appointment was over. Super nauseous, super weak. Couldn’t eat my lunch. But as we were walking through the terminal, I bounced back enough to eat a whole bowl of edamame and a sushi roll called something with cream cheese, salmon, fried something, and something sauce. Airport sushi is the bomb, y’all. Someone told me recently that John and I don’t have to be strong all the time, and I thanked them and kindly said “Oh we’re definitely not.” Case in point.
Here are some specific things you can be praying for:
-My heart function to be strong enough to allow me to qualify for the trial.
-My EKG to show no arrhythmias.
-My brain MRI to come back clear. If there are mets to the brain, we would first have to treat those at Vanderbilt with radiation before I could get on the study. I would really like to not have brain radiation. So you can pray that if there are tumors there now, that they would shrink away in the next 2 weeks and if they aren’t there, thanks to God for sparing me!
-For an affordable flight/lodging/transportation plan and long term plan and wisdom to see the right path
-For us to establish a routine that can sustain us in the next couple weeks, and then a new new routine that can sustain us in the next 3 months to come.
-The patience, energy, and presence to be good parents to Carley Jean through this chaos.
-For Carley Jean, that she will adapt well to so many changes and that she won’t be afraid.
-For the Holy Spirit to provide us with whatever virtues we will need at the start of each day.
Thank you for caring for us, surrounding us, and praying for us. What a gift God gave us that we don’t have to do this alone!