I just wanted to write an update for all those wonderful individuals keeping us in their thoughts and prayers. We are so thankful to you - I can never express in words. Thank you to all the new donations we've received and for all you've done for us!
The past few days have been a whirl wind. We loved Nashville and getting to spend some time with Jon's parents who met us there. Our visit was brief, but we drove around the city and love the vibe. We had a very positive meeting with the clinical trial doctor and his medical assistant (she is actually a badass, powerful woman who refuses to let anything stand in our way and refused to let me cry --- basically she's awesome and determined --- I feel safe with her on our team). She is on top of coordinating everything between Emory, Nashville, and the drug company. We are waiting for word, but we plan to be back in Nashville next week for an extended stay where he will get a full work up, scans, and biopsy (I don't love that, but whatever) and at the end of all that, he should start the pill. Then it will be back and forth accordingly.
As the doctor reminded us, insurance doesn't cover the office visits and procedures there. I think he is basically doing this pro-bono - which is amazing! And the drug company will cover some of it. The rest, we will figure out. He said not to be shocked if we get a bill from the hospital there... I'm not sure if he's talking 1k or 40k... you can never really tell with these things. I have some resources to tap into and contacts at the Bonnie J. Addario Foundation who may be able to help us with coverage, but at this point we really don't know. And this is a hot topic in cancer care right now - the cost - but basically - I won't cuss bc I did a lot of that in a previous blog - I'm like "F"orget that... you really can't put a price on your life and the person you love with all your heart, can you??? We'll figure it out. I'm saving all the donations we've received save for what is absolutely necessary to spend, and I am striving to stay in school this quarter, so I have a little money from that to live on. Plus, I'm already in so much debt anyway from student loans, so what does a little more hurt? Seriously, I won't let that stand in our way. And I think it's going to work out just fine - just something (another thing) we have to be aware of in this situation. The good news is that the drug has produced promising results and could be exactly what Jon needs - prayers going up that it will work and for a long time. Further, the doctor talked with us about other options that are available beyond this drug - we like hearing the words "other possible options." Keep them coming!
So we drove home Monday night and got in around midnight - so much traffic and construction on the road. In a blur, I started class yesterday. Jon got in an edit of Cottonmouth and worked on our website - it's coming and looks amazing! All good things! Emotionally, it's so stressful and hard on us, but we just keep on going - don't ask me how because I do not know. A big shout out goes to my best friend Mary Harper, who literally walked me through the steps of getting ready yesterday for class. "Step one, get a shower, step two dry your hair, pick out a cute outfit, etc." This sounds silly, but basically it's just what I need on hard days.
Another thing that has become apparent to me is that in order to make this quarter work, I have one onsite directing class (which I love & in it I want to produce the short film Que Sera I wrote this summer) and contemporary art online, is I have to be hyper focused and on task. Therefore, this week, I am going to forego social media. I think a break will be healthy, not just in time management, but also emotionally. So, I'm going to go "dark" for a while, but I'll still be available through FB messenger and email, so please reach out. I'd really appreciate it. We also always welcome visitors if you'd like to do it the old-fashion way, so please feel free to reach out for that or a lunch - those visits are really special and good for us.
Thank you all for everything you've done! We really appreciate it and I will be back next week to update again. I hope you are all well and happy and enjoying this beautiful weather!