This is a long one with lots to update so get ready...
Number one, I am exhausted. I've finished my first year of graduate school and we premiered our short film, Nirvana tonight. For weeks, I've been thinking about this night. Specifically, I've been thinking about this moment - having completed it all. I felt like I was running a marathon and this night is my finish line. On top of school, we've been juggling a few other projects and, oh yeah, managing Jonathan's health and trying to figure out next steps. Now that this moment is finally here, all I can do is breathe a sigh of relief and thank all the powers that be for getting me here. We did it!
With the help of so many friends and family, we flew to Boston last week to meet with Dr. Alice Shaw - the best of the best when it comes to lung cancer. She lived up to our very high expectations. She was kind and very understanding. We feel blessed to have her join our team of doctors. So, I will try to condense a lot of information into a brief update. To sum it all up, we feel pretty good about our next treatment plans. We are, of course, scared, but hopeful that we can get back on track.
Jonathan's insurance doesn't pay for phase 1 trials. The drug we want to get next is closing its phase 1 trial and moving into phase 2 this summer. We think we can get the insurance to cover a phase 2 trial. Although we have raised a great amount of money that will help us through the future treatment plans, it is nothing compared to actual hospital costs, so getting our insurance to cover most of the treatment, if not all is essential. It's all so complicated, frustrating, upsetting, and stressful, but Dr. Shaw set forth a good plan. Her confidence helped calm our nerves as well.
Jonathan will enter chemotherapy next week. The chemo regime seems manageable and we have known others who have done this treatment with great success. He'll go in for infusion one day every three weeks and the therapy proves to have good results in the brain (a trouble area for us). If chemo works and manages the cancer, he will stay on it. For some, this chemo has kept the cancer stable for a few months and, for others, a few years. There is no way to know. Of course, we want one treatment to work as long as possible. When it stops working, we will then switch over to the clinical trial (or 3rd generation pfizer drug for those of you who are LC savvy). Dr. Shaw's confidence in this plan made us feel really good. Plus, she said there are other trials that could help us in the future. She made us feel very hopeful. So much in fact I was thinking of moving to Boston for a while there...
It was really hard to come back around to chemo. A part of me thinks of it as a last ditch effort, but that's not true. We can use it as a bridge to the next drug. We just had such a bad experience of chemo the first time when Jonathan was misdiagnosed. But, we have to do what we have to do. I'm always saying I have to "let go," but it's not something you can just do and be done with it. You "let go" continuously. Day after day. Moment after moment. You have to keep letting go and believe. I believe he will feel well again. Seeing him in pain over the past few weeks has hurt my heart so much. But seeing his courage brings me to my knees. Days have been dark and painful. Some nights I've cried so hard I thought my ribs were going to break. Getting through classes and assignments proved to be very difficult. I honestly thought I would crumble. Yet, here I am. My friends and family have carried me through. All those who have donated to our medical fund lift my head out of despair. We have savings now that we can dip into whenever we need to get on a plane to see a doctor or start a new trial in Boston or Nashville or wherever. I feel the power of community and family now more than ever. I thank God and the universe for all those who have helped us and I open myself up to opportunities where I may pay it forward and do the same for others in need.
Screening Nirvana tonight was the perfect ending to the week and the school year. Jonathan has created a beautiful, poetic film that emanates honesty and the raw emotions he has gone through as a cancer survivor. After the screening, we came home and he just cried - overcome with emotions of the night. I stand in awe of the person he has become. I am so proud of him. Selfishly, I still wish this wasn't our life, but I need to stop with that and come to terms with it. This experience has transformed him into such a thoughtful, whole, soulful human being. When he experiences immense pain from the cancer, I watch him close his eyes and breathe slowly, in and out. Meditating. I know it's not fair, but as I observe him, I am learning to accept. This suffering is ours to endure. And by going through it, we are fulfilling a part of our mission on earth. You don't go through what you go through for nothing. All the films that we make or stories that we write won't be about cancer, but they will certainly be infused with the knowledge, wisdom, and awareness we've obtained over the past 2 years.
And now that I have given you a thorough update, I am going to take a much needed break - if life allows it. This summer, I want to live life simply. I want to get back to myself. I want to spend my days reading books, biographies, screenplays, and memoirs. I want to catch up on my favorite tv shows and continue binge watching shows like 3rd Rock from the Sun, Gilmore Girls, and Californication. I want to watch classic old movies both at home and in theaters. I want to go to the drive in. I want to write short stories and poetry (a few that I may post if I'm feeling confident) and finally dive into the second draft of my feature screenplay. I want to listen to good music and maybe take a trip to the beach. I want to curl up on the couch with my man and my puppy with candles lit and the windows up. I want to sit on the porch during a thunder storm and pick blueberries on Sunday. I want to go to the farmer's market and cook big meals. I want to lay in the grass looking up at the clouds and run around bare-footed. I want to go for long walks and get back into yoga. I want to (finally) go to the aquarium and visit the High Museum again. I want to do all this and more with Jon. I want him to feel well and I want us to enjoy spending time together. I want to encourage you all to do the same. Allow yourself to embrace the laziness of summer. Stretch out and let yourself just be.
Cool things that happened:
Our Medical Fund was mentioned on Nora Purmort's blog HERE. She sent me such a sweet email saying that so many of our friends reached out to her suggesting she add our fundraiser to her monthly list. Nora is my personal hero. Take a moment to look her up. Her husband passed away from cancer 6 months ago. He also revealed his true identity as Spiderman in his obituary HERE. She is raising their precious little boy. She is an incredible writer and has a book deal in the works. She helps so many people and has started listing fundraisers for those in need through her blog. An amazing human being if there ever was one.
We were interviewed by WABE (Atlanta's NPR station) about Nirvana. Listen to it HERE.
In Boston...
Oh, and Harper made this face...
With love,
Robyn
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