Que Sera

que sera sera: whatever will be, will be

I haven't done a post in a long time. We have been so busy and I don't have much of an update on Jon's health. We were in Nashville for a week, then he went to visit his parents while I came home and continued school. The past few weeks have been crazy, but they've also been really, really good. I don't have any official status of the cancer... but Jon started his medicine on Oct 1 and he is feeling really, really good! I hope that's a good sign. His appetite is back as well and he has gained weight, so again, hopefully a sign that good results are ahead with this new medication.

We are so thankful to everyone who has surrounded us with love and support. Now that we've been in this for several years, it's the small things and we appreciate your words of encouragement, pats on the back and reminders that we are doing the best we can with given circumstances. Thank you!

My graduate studies are in full swing right now and that is honestly a lifeline. I am in a wonderful directing class with some amazing people. Each week we gather to work, create, talk, argue, and get excited about making movies! I am so excited to officially announce my goal of directing a short film, titled Que Sera, by the end of this year!!! Inspired by events in my own life, the short will be my first solo directing venture, with Jon coming on to produce, edit, and be my right hand man! Right now, I am working with some fantastic people to get it launched with projected shoot dates in December. The key elements to this short are my actors and DP, so once I lock down those special roles, I can think more about dates. This project will be a part of my directing assignment for class, with a short of the short being filmed very soon, and the professional short being done in December. Writer/Director/Producer Jen West, whom I talk about all the time and admire so, so much, is coming on board as producer and we are in talks with and auditioning actors this week. I can't say how good it feels to throw myself into something creative.

So what's it about? Well, they always tell you to write what you know, so the story is slightly autobiographical - about a young couple dealing with cancer. Whereas Nirvana is about one individual's personal and spiritual journey, and told in a very poetic, experimental manner, Que Sera is more realistic, observational, and narrative. At the core, it's a character study on two people coming to terms with a diagnosis in their own way. We won't always make movies about cancer, but it's been a major part of our life and that reflects in what we create as artists. And while it's about cancer, it's more about two human beings falling in and out and back in love all while navigating the good, bad, absurd, beautiful, and ugly that comes along with such circumstances. Movies to compare it to would be Blue Valentine, a really great indie I recently watched called Smashed, Like Crazy, and 50/50. The ultimate goal for this is to see it through to a feature in the next couple of years. With all that we've been through, I feel the material has chosen me. I wrote the script in under two hours. I feel the need to honor it and continue to explore it's major themes eventually in feature format.

I am not planning to do a crowdfunding campaign for this, it just doesn't feel right with all the money we've needed to raise to pay for medical expenses and the clinical trial. The budget is very modest and will all go to paying a fantastic cast and crew and taking care of them on set. As a filmmaker, I'm also trying a different tactic in that I'll be reaching out to people individually for larger asks. This is something very new to me, but as I'm learning, very necessary if I want to ever get anything made. If you are reading this and you are interested in coming on board as an investor, please reach out to me! I'll send you the script and take you to coffee. A wonderful mentor and businesswoman gave me some great advice in thinking of money as energy being passed from one cause to another. I'm asking for a little bit of energy to bring this project to life. In the future, I'll pass on that energy for other great causes. I hope that makes sense as I write it, but it really helped me gain perspective on making these asks, dealing with possible rejection, and continuing to move forward.

If you're reading this and you think you can offer your services - maybe equipment or a skill - or you're a creative who is interested in coming on board, message me! I'd love to chat!

I'll keep you updated via the blog on developments, casting, etc! Thank you all for your support!

With Love,
Robyn

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

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

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

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

Girl Power!

A month has gone by since my last post and I feel like so much has happened. I'm already anticipating the change of the season, and with that comes time for reflection and gratitude. In August, we received good news from Jon's CT scan - meaning the new chemo treatment plan is working from the neck down. Anxiety is lurking on this rainy Sunday morning as tomorrow brings a routine MRI scan to check on the brain. Hopes and prayers for no change in the brain or shrinkage. We are not too far out from whole brain radiation and chemo is supposed to work somewhat in the brain, so we are (as always) hopelessly optimistic, but nervous. If there are more spots in the brain or signs of progression, targeted radiation is a possibility, as is the clinical trial we keep our eyes on in Nashville. Our doctor is working hard to get it here at Emory, which is also something to be grateful for. To combat the stress of tomorrow, we plan to spend this rainy day quietly at home by watching the Fargo tv show and a Woody Allen classic tonight - which is quickly becoming a Sunday routine.

For me, the past month turned into a very productive, happy time. Though our plans were fairly simple, Jon and I both set goals for ourselves in writing. He is very close to finishing a feature screenplay called Cottonmouth, I am working on a rewrite of my feature, Nobody's Darlings, and I finished a short screenplay titled The Wars - set in the 1960s about an interracial teenage couple on the run through the South. Nirvana is the final post-production phase as Jon and our amazing sound designer, Jeffrey Bullins, perfect the sound mix remotely as he is based in New York. I'm also very excited about getting back to my graduate studies at SCAD, especially now that I am entertaining thoughts about a PhD! I am taking an online course in Contemporary Art - which I will love and it will inspire me, also I love the format of courses online. And I have a course in Directing - where I hope to film one of the short screenplays written this summer! Sad news, I quit my job managing the community center and working part time at the shop around the corner here in Serenbe, but I felt it was time. I have my eyes set on a tutoring job at SCAD with an interview next week. If I get it, I'll be working with ESL students. I think it will be a great fit and also look great on my resume when I begin applying as a professor. And because I know people might ask, we have no plans to leave Serenbe. In fact, I have fallen deeper in love with this community over the summer months and will likely stay here for as long as possible. I even have a post in mind solely about my love for this special place, which I hope to write next.

Something really awesome revealed itself at the end of summer and that is the strong force of feminine power that surrounds me. I have never been the type of girl to have tons of girlfriends around me all the time. I've often felt more comfortable either by myself or hanging with the guys - and by guys, I mean Jon - haha! I've had several close female friends - usually one at a time, depending on where I was at that time in my life. Truthfully, being friends with a lot of girls has often frightened me - I don't want to get caught up in the cattiness and gossip that sometimes comes with the territory. However, recently, I have found a group of girlfriends that have been so welcoming, kind, and generous to me! From the amazing tour de force that is the New Mavericks group of ladies to my reaffirmed strong bond with my childhood friend, Mary Anne, to long conversations with my best college girlfriend, Natalie, in LA (I promise we're coming to see you soon!), I am learning to lean on them for strength. I am so thankful for their friendship and for the special times we've shared just in the past few weeks. I recognize this bond is very important at this time in my life. I need them surrounding me from many different corners of the earth - near and far - and I'm grateful to each and every one of these special ladies in my life! I am so fortunate to be married to my best friend and spend each day and night with him! For the longest time, I kind of shut other relationships out of my life just because I was so happy being with Jon. Now, I am putting more effort into my friendships and these amazing women have proven their devotion to me, as they stick by me through thick and thin. So, I am dedicating this post to them! Love you all so much!

My best friend, the person I am constantly texting, and the other love of my life/soulmate, Mary.

Trip home to Southwest GA to see my Mama, Mary and her sweet baby girl Lily.

Didn't have a photo of just us... but here we are with our handsome men... my ROCK, Leslie!

Girls making movies... two of my actress muses, Skylar and Tatum. 

Friends in life and film, New Maverick ladies and beautiful fellow brunettes - Jen & Lane (Brantly not pictured but you are in this photo in spirit as our fearless leader!)

Worlds colliding - Mary & Jen at the New Mavericks Film Series AKA my happy sandwich! 

My beautiful baby girl and protector - Harper Grace!

Lovely and Sacred Girls Day in Serenbe with Jen & Wendy! 

Girls day ended in the rock labyrinth - a very special place of refuge for me here in Serenbe!

Sculptures Made of Snow

Turn on the news and it becomes obvious that we live in a broken world. Between television and social media, one cannot ignore the many controversial issues that tear people apart. For some reason, this summer has been particularly terrible. From innocent black people dying to hatred against same sex marriage to the many other issues that plague our nation, one can become totally overwhelmed with the injustice and lack of understanding in this world. Truly, it is difficult to fathom in this day and age. I cannot help but be reminded every day of how short life is - whether you live to be a teenager or into your 90s. We're all here just for a blink of an eye. I'm sure everyone reading this understands and feels the weight our nation has been under recently. Individuals armed with guns are taking innocent lives in small town movie theaters and churches. Where are we safe? What can we do about it? How can we make it stop? Where can we seek refuge from this destruction, anger, and derangement?

And those are the big issues that affect the world. What about our own little, individual problems and woes? This summer, I have swayed back and forth between confidence in myself as an artist/ my future and feeling like a complete and utter failure. I'm trying so desperately to get back in the saddle, but I have found it terribly difficult. I say I'm going to take care of myself, go to a doctor, get a therapist, clean the house, write a screenplay, read a book, etc... and some things get done, but some just don't. I'm sure you can all relate to this dilemma because we never feel as though we have enough time. And with school fast approaching, I am trying desperately to get myself in gear and hoping the task will motivate me to focus and find that happiness once again.

But cancer is ever so prevalent in our lives once again as we approach scan results Monday morning. There we find out if the chemo is working (for the time being) or if we need a change in treatment. It's amazing how cancer can fade into the background when things are going well. Of course, Jon isn't 100%. He still needs to gain weight and I know, physically, he is not where he was at the beginning of the year, but I think he's improving. But it's hard for me to say or declare it one way or another.

And of course cancer is the reason I cannot (for good) get my life "back on track." Whenever I do, I'm just afraid it will sneak back up on us and attack. Even with this last scare in May, things were going so good. I was on fire with a feature screenplay I'd written and my head was filling up with thoughts on making a feature film and being successful. Then, BAM. It once again all came tumbling down. But, I'm starting to think that's just life. A (brilliant) professor and mentor once told me that plays were just "sculptures made of snow." Here one night and gone another, melting into our memories. Maybe that's all life is, as well?

Don't let my somber tone fool you completely. We have had a very happy summer, mostly just retreating from the world a bit. Vacation was amazing and (if all goes well with scans) we are planning a trip to Jon's hometown and possibly a trip to see our dearest friends in LA before school starts. And Jon and I are pretty much happy and content whenever we are together. We once had a party for two in an ER room watching The Breakfast Club and eating vending machine food... so we know how to overcome.

Most importantly, thank you all so much for contributing to our GoFundMe campaign. I can never tell you how much this act of love and kindness means to us. Basically, just imagine you at your loneliest and saddest moment and then imagine your best friend or favorite person on earth walking in the room and giving you a thousand hugs and kisses. That's kinda what it feels like but even better. You all reminded us that we are not alone and that we are loved. And that our happiness and health matter. I want to sit down and write thank you letters, but goodness knows I still need to do that for my wedding, and when I think of all the people I need to thank, the list becomes overwhelming. And honestly, I know spending precious time with Jon is what you all would rather me be doing, so even for that... I thank you. If you see me, let me give you a big hug and whisper thank you in your ear. It means so much to us. We have a good amount saved (for the clinical trial possibility that awaits) and the funds have gone toward paying for important medications that insurance wouldn't cover. At 28 and 29 years old, there is absolutely no way we could have come so far without this help. Thank you!

And finally, please join me in taking a moment to think of all those in need of love and prayers right this very moment. There are so many. Whether they are battling cancer like us or dealing with some other tragedy, please take a moment to send out love and compassion. God knows our world needs it. With abundance. And, as always, hug the ones you love extra tight tonight.

With (so very much) Love,
Robyn

Waves of Grace

Ever since the diagnosis that shattered our perfect little world, I have had a constant, tiny voice inside my mind whispering, "Be in the moment." I have tried and failed time after time to accept the challenge, but the painful truth that I believe every human being, or most, must come to terms with is that we can never truly be fully in the moment, for it is a part of the beautiful, sorrowful truth of the human condition. The yearning to see life beyond the physical and grasp it's meaning... hold it in our hands but for a while, is impossible. Perhaps the ability to live in the moment comes with wisdom or age. Perhaps those that are truly enlightened succeed at this nonviable task. For my twenty something being, who has faced a good deal of life's extreme highs and lows, I still find it difficult, but a pursuit worthy of the struggle.

A true vacation, one with little to no trace of doctors and appointments and cancer, is the closest I have come. I find being thrust out in foreign surroundings in a new city forces you to let the worries of the world fall away. That is what I have done for the past week, and what tends to be easier for me to do when at the beach. This week has, and will always, reside inside it's own perfect little bubble. Nothing came before and nothing after - at least that is how I have felt. That simplicity of thought has been divine and a much welcome vacation from my usual state of anxiety and dread. I have been out of school for an entire month, but have somehow filled that time with constant movement. Be it cleaning or preparing or working or just stressing. And who can blame me? The past two - three months were chaos. This vacation forced me to sit down, like a child put in the time out corner, and just be.

How often do I write of the concept of "letting go?" In some way or another it comes out in every blog and journal entry I ever write. And I think about it constantly. If I were to ever become famous, scholars would study it as one of the ever present themes of my work. (Haha) "Letting Go"is another one of those abstract, self-help book notions that one must work extremely hard at to comprehend. I can sit in front of my tv and watch Oprah talk about it all day, taking copious notes, and once I think I've finally got it, something devastating (or not so devastating) happens and I immediately want to be back in control. Recently, I watched an amazing interview with a strong, modern day heroine named Jen Hidinger. She's somewhat a celebrity in the Atlanta social circle and is the genius behind the development of Staplehouse and The Giving Kitchen - both in honor of her late husband, Ryan Hidinger, who passed away from gall bladder cancer last year. She said that early on in the diagnosis they both decided to "let go and let be." I want to sit down with her and ask a billion questions, but the main one being: How? How in the world is this accomplished?

As our vacation draws to a close, I can say I once again came close. But that's me, constantly knocking at the "let go" counter but never truly buying in. And that's okay. I went out for a solo sunset beach walk yesterday and found the peace I needed to accept this. Surrounded by families and rowdy fourth of July rednecks (I am, after all, in Panama City), preparing to gear up for the night festivities, I stood alone in the tide. I closed my eyes real tight, let the world and the rednecks drift away, and I cried. About knee deep in the salt water with my feet quickly sinking into sand, I couldn't see which type of wave was about to crash. Was it light and gentle, or hard and dangerous? I had no idea. But, just for a moment, I was okay with not knowing. And then I thought, maybe the answer to my dilemma is quite simple. Maybe, somehow or someway, I should think about letting go of letting go...

“I thought of you and how you love this beauty,

And walking up the long beach all alone

I heard the waves breaking in measured thunder

As you and I once heard their monotone.

Around me were the echoing dunes, beyond me

The cold and sparkling silver of the sea --

We two will pass through death and ages lengthen

Before you hear that sound again with me.” 

― Sara Teasdale

“Because there's nothing more beautiful than the way the ocean refuses to stop kissing the shoreline, no matter how many times it's sent away.” 

― Sarah Kay

“We know only too well that what we are doing is nothing more than a drop in the ocean. But if the drop were not there, the ocean would be missing something.” 

― Mother Teresa

“There was a magic about the sea. People were drawn to it. People wanted to love by it, swim in it, play in it, look at it.” ― Cecelia Ahern, The Gift

“She would be half a planet away, floating in a turquoise sea, dancing by moonlight to flamenco guitar.” 

― Janet Fitch, White Oleander

“She loves the serene brutality of the ocean, loves the electric power she felt with each breath of wet, briny air.” ― Holly Black, Tithe

“Her happiness floated like waves of ocean along the coast of her life. She found lyrics of her life in his arms but she never sung her song.” ― Santosh Salwar

“I'm always happy when I'm surrounded by water, I think I'm a Mermaid or I was a mermaid.

The ocean makes me feel really small and it makes me put my whole life into perspective… it humbles you and makes you feel almost like you’ve been baptized. I feel born again when I get out of the ocean.” 

― Beyoncé Knowles

“There's nothing wrong with enjoying looking at the surface of the ocean itself, except that when you finally see what goes on underwater,you realize that you've been missing the whole point of the ocean. Staying on the surface all the time is like going to the circus and staring at the outside of the tent.” 

― Dave Barry

“I have been feeling very clearheaded lately and what I want to write about today is the sea. It contains so many colors. Silver at dawn, green at noon, dark blue in the evening. Sometimes it looks almost red. Or it will turn the color of old coins. Right now the shadows of clouds are dragging across it, and patches of sunlight are touching down everywhere. White strings of gulls drag over it like beads.

It is my favorite thing, I think, that I have ever seen. Sometimes I catch myself staring at it and forget my duties. It seems big enough to contain everything anyone could ever feel.” 

― Anthony Doerr, All the Light We Cannot See

A big thank you to Jennifer and Waves of Grace for making this special time of peace, healing, and togetherness possible. And thanks to our dear friend, Paige Smallbone, for nominating us for this adventure. We are eternally grateful for your kindness. 

With love,

Robyn

Father's Day

I don't remember what it's like to cry on my daddy's shoulder.

Father's Day has always been a strange holiday for me. I've never known quite what to do with myself. Raised by a single mother, I always imagined having a father looked like this:

So, me being me, I'd always spend Father's Day watching a marathon and fantasizing of the idyllic American dad. From Atticus to George Banks - I was certain this is what having a father would look like. 

My father was born in 1936. When I was a child, he was the age of most of my friend's grandparents. Were he alive today, he'd be approaching 80. Here's an excerpt from an essay I wrote in high school about my father: 

I lived with my mother and daddy would come in and out of my life, mostly unannounced. As a young child, I believed he was a real cowboy, a small but strong man, stepping right out of the “Hollywood Wild West” and onto our front doorstep. He always wore tight, dark blue jeans and worn-out plaid button up shirts. With the scent of alcohol and smoke on his breath, he would always bring me one of his special homemade gifts, like a stuffed royal blue elephant he stitched himself. When he would give me a hug, I found my small body wrapped up in his lanky, frail structure, bones crushing and struggling for air. His rough, bony hands would always stroke my face, delicately, and his kisses were like those given by a lonesome hound dog. His big brown eyes were so dark that the pupil was difficult to distinguish and his voice was deep, soft and very raspy. I recall his laugh as a series of deep grunts and breathless coughs. He was no Atticus Finch, but still he struggled to give me as much love as I could possibly stand within the time frame of those very brief visits. I could tell even then he seemed to be constantly yearning for love but always too reluctant to accept it. 

Later in the essay, I write: 

As a child, I always wondered why my father was so affectionate. In the winter of 2000, I realized he was simply making up for lost time we would never share. My last memory was of daddy lying in a hospital bed struggling for life. His skinny body was wrapped up loosely in a white hospital gown and his thin face was covered partially by an oxygen mask. The funeral that followed was awkward and is a hard memory to revisit. I participated in the planning and was even present in selecting the casket: a simple, yet elegant pine box, the grain of the wood visible through the varnish. I stood at his side, along with his other children, and felt as though I was standing in a place I shouldn't be. The sweet aroma of flower stands overwhelmed as I greeted each relative and friend who came to pay their respects to a man who was never understood. Shattered, abandoned, alone, I had lost someone I never truly got to know.  

Father's Day used to be a painful holiday that I would endure, but I have become more resilient over the years. No, my day won't look like the smiling happy pictures I'll see on Facebook, but that is okay. And I may not remember what it's like to cry on my daddy's shoulder, but I know, deep down, that I did many times as a little girl. So, although my Father's Day is different, I, like many others, spend it honoring the memory of my father. The great man that I know he was. The influence of him on my own being. The many traits that I don't even know we share. I also celebrate it by thinking of the strength of my single mother, who did her best to fill both shoes. And an extended family who came together to show me so much love throughout my childhood. 

I also consider myself one of the luckiest girls alive because I get to spend another day with a great man who reminds me a lot of my father. My husband has shown me what it truly means to be a fearless man. His compassion and love for me exceeds any expectation I could have placed on my life. And for him I am thankful. Thankful for his strong shoulders I can always cry into. 

We don't have children in the traditional sense. But, as I type this, I swear to you that our puppy, Harper Grace, knows that it's Father's Day. She has been curled up in her daddy's lap all night. So, there's another blessing to celebrate. Because after all, my life may not be all that traditional, but it sure has been wonderful. 

Happy Father's Day, 
Robyn

Laughing Again

We are all broken.

From the moment we're born, we begin to break. It's as immediate as oxygen hitting the lungs. As my mother, or any other pessimist might say, "it's all downhill from there."

That's a horrible way to look at it, huh? And I promise I am not that pessimistic, even though there are times. A reluctant optimist, maybe, because no matter what happens to me I always maintain a sliver of hope. Or even a pessimistic optimist as my dear friend describes it. That might best describe me and is a great oxymoron for you on this Sunday morning.

I've been doing a lot of yoga, as well as trying on the practice of mindfulness. I won't share too much because I feel it is very private and very much my own, but as I was reflecting on my day the other night before bed in meditation, something really stuck out as hurtful. As the guide asked me to "Let it go... let it go..." I absolutely could not! It wasn't going anywhere. So, I'm writing this post as an effort to "let it go." As someone who is racking up a lot of life experience nowadays, I've officially decided I hate the phrase, "I can't imagine what you're going through!"

It's a throw away line. A filler for when you don't know what to say. I know I've even used it before to others. It seems genuine, but it's rather useless. Oddly enough, my response in real time was to nervously bust out laughing and say, "Well...uh...we do the best we can." And then I change the subject, "You're hair looks so nice!" Ha!

I feel you Kristen...

Here's my real response: Don't! Don't try to imagine it. Why would you do that? I can't imagine what it's like to be you, and even if I do try, it's useless. I'm never going to be you! Maybe I want to... maybe you have a healthy husband. Maybe you have beautiful kids. Maybe you seem to have life all figured out. You probably don't, because we're all trying to figure out this bewildering beast, but maybe the facade of your life looks really nice. I'd love to try it on. Maybe even have it for my own, but now matter how I twist it, your life is not mine. And mine is not yours. Cancer is not mine. It's not ours. Jon and I don't have it patented. Illness and misfortune could happen to anyone, anywhere, anytime. Be thankful for what you do have today, what is yours, and know that all things are transient. As I mentioned in an earlier blog, I'm striving to accept this.

So that phrase, "I can't imagine what you're going through," can really set me back. It's hard to let go of and it makes me feel like a leper. Leper - a person who is avoided or rejected by others for moral or social reasons. For the many people who have said this to me, or someone else who is "visibly broken," or even to myself who has said it in the past to others, let's scrap this phrase from our vocabulary. 

Joseph Campbell once said, "Enjoy the tragedy of your life." I love this. I love this so much. I break it down like this in my own words, "Fuck this shit, I'm going to enjoy the ride anyway!" 

A trip to the ER last week revealed Jon has a hernia and will likely need surgery coming up. We follow up next week. As far as I know, it's unrelated to the cancer. Just a little side attraction we get to deal with. Good news is that it doesn't hurt him. All in all, he's feeling better and I'm hoping that's the chemo working on shrinking the tumors. Despite our "unimaginable life," we've been having a ton of fun lately. Planning for a beach trip, playing rummy (one of the best summer past-times ever), and as always watching movies. I even have a new job in Serenbe as a shopgirl - a position I've found I can can slip into easily. And we've started chatting again about film projects and screenplays. The important thing: we're laughing again, and that is, after all, the best medicine. 

Have a beautiful Sunday,
Robyn

What are your favorite things?

I experienced an outpouring of messages and love after my last blog post. Thank you all so much! I really appreciate your support. When we're "in it," and we've been "in it" more over the past month than we have in the past 2 years, I easily forget about the support system I have around me. From friends and family I can call to neighbors right out my back door, I know we have many ready and willing to help at the drop of a hat. That fact is easy to forget when times get hard, so thank you all for sending messages, posts, texts, and calls. The reminder is a blessing.

I have a question for you...

In my last post, I wrote a lot about observing myself in the worst of times. One thing I noticed is that I get really good at changing the subject. Like, when I'm out walking my dog and I see someone on the street and they ask, "How's it going?" I respond with, "Not so good... I really like your top! That's cute" or "Really crappy... How are your kids doing?" And then the conversation spirals into details of where the top was purchased or how wild the kids have become. Sometimes it's just easier to change the subject than it is to dive into the gory details. I know you understand.

One thing I've found I'm not so good at... is being alone. Ever since Jon and I met, we've done everything together, as most couple do. It's just more fun that way. I think this is a common side effect for caregivers who are spouses and something you must cope with as things change. Nowadays, Jon needs a lot of rest, so I find I have a lot of time on my hands. I've recently taken up a few hobbies and thought I'd share them here. I thought maybe others could share their favorite "alone time" activities as well - keep it clean, folks! Maybe it's a particular book that you love reading or a new website you've found. Perhaps it's exercising or a tv show that is all your own. Please let me know and maybe we can all inspire each other with new hobbies and activities.

This summer, I want to get into my ancestry and origins, so I have that to look forward to. I'm also reading a wonderful book: Let's Just Say it Wasn't Pretty by Diane Keaton. I challenge anyone to feel lonely when you're with Diane. She is brutally honest, funny, & soulful. I also obsessively watch Gilmore Girls and my most recent addiction is YogaGlo. If you not only want to practice yoga but learn about it as well, and if you are as reclusive as I am and shy away from group exercise classes, this is the site for you! You can pick out your favorite instructors and practice at your own level, plus you can concentrate on your body for more fitness driven classes or your heart/mind for more mindfulness practices. And classes range from 5 -90 minutes, so you can pick and choose what works for you. It truly is amazing and I'm so thankful to my friend Dianne for introducing me, so here I am passing it along.

Now, it's your turn... what are your favorite things? 










With love,
Robyn

Okay.

When you face deep trauma in your life, I find the experience so dumbfounding, interesting, and utterly unreal. Your body leaps into a protective mode as your mind slowly withdraws from the chaos of the world. It almost feels as though you build a cocoon around yourself as quickly as possible to shield the threat of terror and disaster. Life immediately slows down, for you. But you witness it go forward for everyone else, although you no longer feel a part of it. Every waking moment becomes a hurdle you must get through. One breath at a time. You begin to think, "I made it through one minute, now to get through the next" and so on. Anything beyond one minute just feels like a dream, or maybe even a nightmare.

The only way to get through something is to live it. No matter how difficult or painful that may be, it is most certainly the only way to get to the other side. The past weekend was the absolute worse we have faced in the two years we have endured cancer. My eyes widened to realize the severity of the situation and how there is no going back. So much of our struggle and game-plan faded away as we faced the harsh realities of cancer. Up until now, we've been really fortunate to go from one treatment to the next. As we prepped for chemo, we were forced into an odd in-between state. The meds that once worked so well had stopped working. As the cancer presumably spread, pain and sorrow crept in while we were sleeping and our situation shifted. Although we have a hopeful treatment option in place (I am sitting in the infusion room as we speak) with promising options down the road, the past weekend enlightened me. I shattered with the pain of knowing this may be a glimpse into the future. Our future.

I have not lost hope, but I have always swayed on the side of melancholy. That is just the way my brain functions and my face settles. All my life, strangers have asked, "why are you so sad?" I know I have an innate ability to see and feel pain. I cannot ignore it. I'll break down crying at the grocery store if the mood strikes. I don't know any other way to explain it other than I feel a lot of sadness in the world. I always have. And oftentimes it prevents me from experiencing mundane complacency, a fact that makes me rather jealous frequently. So, please know that I am a fighter, just as Jon has so proven himself to be. And I believe in miracles, maybe even more so than most. I am an optimist at heart, truly. But as we navigate the extreme highs and lows of cancerland, I feel the loneliness of our situation weighing more and more on my heart. For us and for all the millions of people who face a similar path.

Because that is exactly what trauma breeds... loneliness. And isolation. It's a curious matter. Although millions face this terrible disease everyday, and despite the fact that at this very moment I am surrounded by cancer patients being infused with chemotherapy, fighting for their life... I know we all feel alone. Like with Facebook, one day you can get on and feel so comforted by photos of your friends and their babies and pets, so inspired by all they have going on in their life; and the next day, you log in and immediately feel left out and depressed. Sometimes looking at Facebook can be a lonely and isolating act. I find this duality so odd and fascinating. The observer in me is watching as I deal with all things cancer and analyzing how I absorb information and agony. I've only felt like this one other time in my life: when my father died. Once again, I am that child trying to make sense of a senseless world. And I stand in awe of both how beautiful and peculiar it all is. I know this probably makes no sense at all.

So often I hear these words: "I don't know what to say." I think this is the reason so many friends and family members have drifted away through the years. I don't blame them. Of course, I wish I had them in my life, but I know that being my friend comes with a lot of baggage. I can't imagine the burden. So, I'm not surprised when people go on with their life. I don't even understand why someone would read this blog unless they too have cancer in their life. I write this more for my need to write and figure things out, rather than my need for others to read it. Of course, as a writer, I want to be heard. But journaling has become my best friend and councilor. I strongly suggest everyone write, no matter what you're going through. It helps so much. And serves as a great reminder of where you've been.

This blog has gone terribly off track. Shall I focus? Being a caregiver is the most difficult role I will ever have. My only hope is that I can help others by sharing my experience. I am not a full time caregiver. Thankfully, treatment options have made our life very normal up until this point. I am a full time wife to the man I love. I only put on my caregiver hat when I have to. At the worst of times, taking care of someone else is a suicide of the self. One must sacrifice everything, completely, to meet their every need. At the best of times, I have learned more about humanity and vitality than I could ever have imagined. Perhaps I'm doing a terrible job conveying these thoughts, but what I'm trying to say, now that the worse of weekend has passed and hopefully we are over a rough patch (for now), is this: I am okay. I wasn't, at first, but gradually, I became okay. Different from before, but I am okay. And I'm going to be okay. Jon is going to be okay. We are going to be okay.

And here's what I mean by that: We're young and we may not get all the things in life we want or dreamed for, but that's okay. It's okay because I'm learning that life is not about what you want, it's not about being greedy and asking for more. No. Life is about what you are given. Maybe it's not what you wanted, but it is yours. Hold onto it, but don't suffocate it. Accept it. I finally feel, that after all we've been through, I am skimming the surface of acceptance. I am by no means there yet, but I've dipped my toe in the waters and it feels just fine.

Finally, there's been a lot of chatter in the media about how to approach someone going through a traumatic experience. Perhaps you've read Sheryl Sandberg's beautiful essay about the loss of her husband. For those who are interested in helping us and helping others going through devastation (and this is just as much for me when dealing with trauma in other's life), here's a few tips. The optimism is great. Especially in the beginning. The fundraising is incredible! Your generosity has made our life easier and opened up doors for a promising clinical trial as our next treatment option. But in the end, what matters most, is empathy. I truly believe that empathy is the pathway of change. Empathy has the power to move mountains and end wars. No matter your religious or political beliefs, empathy is accessible to us all and one of the least exercised emotions in America. But it is the most necessary. Empathy is simple, profound, and, as someone facing a difficult path, I can say it is so deeply appreciated.

em·pa·thy

ˈempəTHē/

noun

1. the ability to understand and share the feelings of another.
   
   "A human being is a part of a whole, called by us "universe", a part limited in time and space. He experiences himself, his thoughts and feelings as something separated from the rest... a kind of optical delusion of his consciousness. This delusion is a kind of prison for us, restricting us to our personal desires and to affection for a few persons nearest to us. Our task must be to free ourselves from this prison by widening our circle of compassion to embrace all living creatures and the whole of nature in its beauty."  Albert Einstein

   
   
   

   With love,

   Robyn