Wednesday, September 16, 2015

Update

Hi everyone,

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!

With Love,
Robyn

Tuesday, September 8, 2015

a SERENE place to BE

When I first came to Serenbe, I didn't know what to expect. Coming down the long gravel road, passing pasture, horses, and cattle, I was certain I was lost. Finally, we rounded the bend and found Selborne Lane, sidewalk, and a coffee shop. I had a thirty minute meeting with Brian Clowdus, director of the resident theater company, Serenbe Playhouse. We instantly hit it off. He had no idea I had driven three hours from my hometown just to meet with him about a possible unpaid internship. Desperate is an understatement. I longed to move close to Atlanta and once again thrive in a cultural environment where I could succeed in theater, and hopefully build a career. After the meeting, I found Jon wandering the streets we would someday call our home. Together, hand in hand, we ventured for the first time into the Serenbe woods - walking amongst trees I now call my friends...

As fate would have it, my unpaid internship skyrocketed into a paid internship, and then into a full time position within a short amount of time. Jon and I made a temporary move to this strange little land called Serenbe - meaning to "serenely be." I began to get recognition in the Atlanta theater scene for my work at the Playhouse and Jon worked on videography and took a part time job at the Serenbe general store, Fern's Market. Together, we established and presented the Serenbe Institute with our idea for a film festival in the community. We produced and directed our first short film, Picture Show, became friends with many wonderful neighbors, and finally, we landed a sweet apartment right here in Serenbe. Our future seemed to be taking shape.

Now if you know me and if you know this blog, you know that future imploded with a cancer diagnosis in early 2013. Quickly, I realized my job was taking up too much of my time and the pressures of working behind the scenes at a non-profit began making me unhappy. We turned all the work we had done on the film festival over to the board we had established, and quickly our time here in Serenbe seemed to be running thin. At a glance, I don't have too much in common with my neighbors, or at least that's the way it often feels. Honestly, I moved from my mother's single wide trailer in the middle of the woods to one of Atlanta's most elite, wealthiest neighborhoods. How in God's name did that happen? I don't rightfully know. We worked our butts off, scrimped, scratched, clawed, bargained, and saved everything we ever had and it happened. We were happy here, but I felt that when I left my job, I should leave the community too. By quitting, I knew I was letting many people I aimed to please down. It was a terribly hard decision to make and it came with a great deal of frustration, humiliation, and heart break. However, our getting here was not just your run of the mill, fish out of water, good luck story. I truly do believe our being in Serenbe was supposed to happen, divine intervention if you will, and it was going to be really hard to leave.

We had decided to move - because as a co-worker and former friend loved to remind me, how could we possibly afford to live here if I didn't work here? It wasn't until the diagnosis of lung cancer that Serenbe showed her true, true, beautiful colors. Neighbors have always been kind to me and Jon, that's just the way people are here - they genuinely care for one another. In celebration and in hardships, people come together here in a way I've never experienced before. After spending several weeks in Jon's hometown out West, processing our situation, we returned to Serenbe into wide open, welcoming arms. The Interfaith group organized a prayer walk for us in the labyrinth - one of my favorite spots to sit alone or with Jon. Support flooded in from every corner of Serenbe. I may have no longer had my job here, but what I gained was so much more. Thankfully, we stayed for a while longer. Since, that support has strengthened as we receive donations, prayers, love, light, well wishes, support, hugs, smiles, dinners and so much more from our dear neighbors. With us, they celebrate our triumphs and surround us when we experience defeat. So many of my neighbors tell me they are learning from my bravery. I can't help but cringe with modesty. What I want to tell them is that I am the one learning a great lesson from them - in humanity, civility, and compassion - in how human beings should treat each other on a basic, innate level. No, they don't always say the right things, but who does in this type of situation, I know I surely don't. But what impresses me most about our neighbors, when it comes to us and in other situations, is their longing for true community. And what amazes me is how much they have taught me about family. Not the family you are born with, but the one you create along the way. From my neighbors in Serenbe, I have learned one of the greatest lessons of all - how to love and move through life as a family, a tribe - holding each other up, and never letting go.

Serenbe is a beautiful place to live and I can't imagine us living anywhere else, especially at this time in our life. Jon and I both grew up in the country, but we love and need to be near a city, so Serenbe really is a perfect location. After a terrible scare just before our wedding, we were forced to look outside of Serenbe for a place to live. The thought was frightening. As fate would have it, and with the help of wonderful friends and neighbors who wanted to keep us near, we found a second little home in the community of Serenbe. This home is my happy place, our little hideaway from the world. I can walk out my back door and dissolve into the woods. I can walk my dog on a foggy morning and at the very moment when my burdens seem so heavy I can't take another step, two baby deer run out before me just beyond my grasp and bring a smile to my face. Serenbe is a place of many things. When I came here, it meant success and status. Now, I tell out of town travelers that it can be whatever you want it to be. Your social calendar can be packed to the day or you can become virtually reclusive and never see another soul. You can build a business here or just find tranquility and escape from the chaos of the city. One thing is for sure, you will meet some of the best people that exist on this planet. For Jon and me, Serenbe is a place we can focus on our love. It is healing, hope, and happily, it is home.

Here is a beautiful video Jon filmed for the Serenbe Development. I love seeing Serenbe through his lens, through his eyes. Take a look:

JON'S "Welcome to Serenbe" VIDEO! <--- CLICK THERE


Production of Alice in Wonderland during my first Serenbe summer.

Fern's Market became a second home & family for us! 

Backyard during the Fall!

Friends.

Favorite place.

Traveling photographer and wonderful soul, Minette Hand, captured us one quiet Sunday evening in the labyrinth. 

With Love, 
Robyn

Monday, September 7, 2015

Gratitude and Looking Forward

We have had a tremendous amount of support flooding in from so many friends, family, and strangers. Thank you all so much for everything. We are so grateful for everything you are doing for us during this difficult time. Social media says it all, although I know we have even more praying and lifting us up. Our fund page has had over 700 shares and my last blog alone had over 700 views - incredible and insane. Thank you!

And now an update: We spent the end of last week planning the next move. Jon's mom was here and she offered support and kept us company, which helped cheer us up. The clinical trial coordinators in Nashville have been very welcoming to us and we've scheduled an appointment with them rather quickly. The doctors there want to see Jon and Emory got his records there at a fast pace, therefore we tentatively have an appointment scheduled in Nashville for next Monday - one week from today. Our chemo was scheduled for last week, but we decided to forego that so as to start the clinical trial drug sooner. If all goes as planned, we will get to Nashville next Monday, he will be evaluated and approved for the drug, and then get his first dose.

So, what do we need?

Donations are so helpful - thank you to everyone. The money will help us with travel, food, housing and paying for office visits in Nashville, which his insurance won't cover. We can and will apply for additional help, but who knows. The great thing is they are willing to see us and work out the payment thing. Donations are so incredibly appreciated and helpful. Thank you all so much!!! Every amount helps us.

DONATE HERE

Next, pray that Jon remains asymptomatic - meaning that he continues to experience no symptoms from the cancer for the next week. Symptoms, which include seizures, speech and mobility issues, etc, could hinder us in getting to Nashville... so we need to pray hard that he remains feeling as good as he does now. Join me in praying for this vigilantly. Right now, he is up and about and feeling great! We spent the weekend writing, watching movies, going out with his mom, eating good food and having a lovely Sunday brunch with our friends Jen and James. As of this moment, just by looking at Jon - you'd have no idea all this is going on.

Finally, we need to pray all goes well in Nashville and that he gets the drug and that it WORKS fast in the brain in shrinking the tumors - especially the one on his brain stem. His lungs and chest look great - so we are hoping this clinical trial drug works fast in the brain and keeps everything else stable for a long time. Looking to the future, there are good things in the pipeline for individuals with this type of cancer. This includes targeted therapies, immunotherapies, and combination drugs... so we just need to take down this one spot, keep it and all others stable, and keep living our life to the fullest.

Thank you all for everything. This is an optimistic post and I am feeling better... things are looking up... y'all know I'm always honest... but it's not always easy to be positive. Some days and moments are really hard and so incredibly lonely, especially as I find myself dealing with other unrelated family issues that weigh me down, but I can feel your love and support. I really need it and appreciate everyone for surrounding us with love. Please pray we can have an uneventful week, stay positive, cuddle often, go for long walks with Harper, and get some writing done on our screenplays. That would make for a great week and make us very happy.

I will keep you posted with pictures and more from Nashville.

Thank you!!!



Love,
Robyn

Tuesday, September 1, 2015

Update

I don't have much to say other than I never wanted to get to this place. This place I have feared for over two years. As many of you know by now, we did not receive the news we wanted yesterday, which was "everything is either shrinking or stable in the brain." No, instead we learned that one little fucker has increased in size. That fucker, excuse my language, but I am angry about this, is located on the brain stem. Basically, we can no longer radiate this spot - and cannot do surgery because of the location. This location is not ideal.

Jon is taking this really hard. Harder than ever before. I fluctuate between faint optimism and total "fuck the world and all the cancer in it... where are my xanax." I'm just being honest. This is a raw and very emotional time. I pray to God it will pass and there will be hope of some clinical trial we can try, but the waiting period is agony. On a serious note, I could just numb myself to everything and knock myself out with medication, which is exactly what I did yesterday. I also managed to email a slew of people and doctors in hopes they can help us. If you could do me a favor and pray really hard that these people get back to me with some positive news, that'd be great.

As you all know, we opted to do traditional chemo in May. We all hoped it would last longer, but that hasn't happened... but maybe, if anything, it allowed a bridge. We are looking into the same clinical trial we had in mind then - Pfizer 3rd Generation (PF-3922) - for those LC savvy. There is a site in Nashville and Boston, and our doctor here at Emory was trying to desperately get it here before Jon needed it. But, the hope is we can start on it in Nashville or Boston. There are a billion requirements for a clinical trial and one reason we opted for chemo in May was because it seemed so impossible. You have to meet the criteria, insurance is a bitch and doesn't like to pay, etc, etc, etc. We started a GoFundMe campaign then and raised a lot of money. We have a good bit saved, but I am going to open the fundraiser back up. Honestly, people ask how they can help, and I hate to say it because it makes me feel helpless, but that is the best way you can help us. Meal trains are nice, but most of the food gets thrown out, especially when our house is turmoil... we really don't feel like eating. That would be different if we had kids. So even $10-$20 bucks you would put in a meal would be helpful.

This summer, a lot of the money raised went toward paying for expensive, experimental drugs that insurance wouldn't cover and that the doctor thought might help Jon gain weight or relieve pain from chemo. It also went toward gas to get to our many Emory appointments and living expenses. We're young, we don't have great, successful (or even steady) jobs, and often times it feels like we're fucked. Especially as I contemplate the next few months. I'm trying to pursue my MFA so I can actually get a descent paying job and I get a good amount of money (loans which I will have to pay back) to live on while I'm in school. Most of my tuition is paid, but this money helps me pay rent, bills, etc. Right now, I don't know if I should even try the Fall quarter - maybe I should just not go (or when I'm really down maybe I should stop all together-what's the point, I think). Anyway, thinking ahead, I quit two steady jobs in Serenbe because I have an interview on Thursday for a tutoring job at SCAD - great opportunity that pays really well and would look great on my resume. Am I going to go? I don't know. How am I supposed to tutor students when my shit is so not together. I think I get my shit together, and our world implodes. They say plan for the future, and I do, it makes me feel hopeful and, God forbid this word, NORMAL. But then something like this happens and, pardon my language again, I'm fucked.

I was gonna keep this short? Right, I guess I have a lot to get out and no therapist... something else (that was free) that would come along with my SCAD enrollment. They offer a therapist on-hand to help students deal. My Humana health plan is not accepted by any therapist I can find within an hour of where I live - thank you very much political officials who work so hard to keep mental wellbeing out of my reach. Anyway, I don't have too much to offer right now. I'm going to inch my way through this day between tears and screams and trying to be here for Jon - because as awful as I feel - I don't know what he's going through. I don't know how to know. It's just a bad situation. Our best chance at the moment is that I hear back from Dr. Shaw in Boston and that either the trial in Boston or Nashville will accept us and we can get there by the end of this week or beginning of next. It has to happen fast though because of the location of the tumor - it could start causing neurological issues and seizures. This pfizer drug, is supposed to be good at getting into the brain. If it could just stop this one tumor... we'd be okay. At least for a while. God help us. I ask for mercy every day. I'm not super religious, but I pray. And I hope that death is not the end for any of us.

That's it.

Oh, and if you want to donate something... anything... it would really help us out.

http://www.gofundme.com/tkr6sc

Thank you all for being there for us. As sorrowful as I sound today, I don't know what I'd do without your love and comfort during this terrible time.

With love,
Robyn