I have not done a good job at updating many who care, including family and close friends. As the months have progressed, it has become harder and more complicated. Jon has been in hospice care at home since April. Prayers, love and support are needed as we move through this difficult time. Although he has declined considerably in the last three weeks, I am pleased to report he is comfortable as he begins this transition. I'm especially happy to have him in our loving home and we continue to share very precious moments together. I have been granted unpaid leave from work and I'm especially grateful I can remain diligently by his side.
I know so many want to help, but do not know how. We are currently not receiving visitors as that would be too stressful. Dear friends Jen West and Lynn Merrill set up a fundraiser to help with cost of living and other expenses during this time. Donations certainly help as we continue to navigate this journey and I consider life beyond. What we need most is your loving and kind thoughts and prayers lifting us up throughout what I pray will be a graceful and peaceful transition.
https://www.gofundme.com/JonathanRobyn
Thank you for all your love, care and support.
With love,
Robyn
Wednesday, October 11, 2017
Friday, August 11, 2017
In the last four years...
I have seen cells of cancer come and go, strengthen and
weaken, grow and subside. I have examined scan after scan rendering results
both terrifying and relieving. I have sat in hospital rooms and doctor offices,
by my love’s side, in moments of triumph and tragedy, celebration and
confusion, hope and mournful defeat. I have watched friends, family, neighbors,
peers, instructors, patients, caregivers, doctors and nurses come and go
through a revolving door. I have pushed people away and clung on to others,
only to have my heart broken when they are unable to deal with the complexities
and messiness of our lives. I have watched friends get married, have babies,
renovate houses, make weekend plans, graduate, succeed in professions and move away. I have envied them and their ignorance to the fact we will all one day turn into dust, regardless of how many children, Facebook likes or social media followers we accumulate. I have pondered
at how some seem immune to tragedy while others are consumed by it. I have held on to regret and watched seasons pass me by. I have been uplifted by the bubbling promise of hope and change for our country, only to see it deflate and watch it fall. I have put on a smile while observing a
spark flicker and, then fade. I have witnessed my love’s physical and mental
abilities dwindle and dissapate. I have noticed my own cognitive abilities, physical well-being and
memory decline, so much to the point that I could barely remember the type of
mutation (ALK) and still cannot recall the name of the first medication – a
word I heard and read so many times I felt we were intimately linked forever. It was only this past spring I allowed myself to throw away the remainder of these pills leftover and hiding under the bathroom sink. I spend days wondering what will become of me, trembling with fear at
the thought of life without my love and consumed by the impending loneliness
awaiting in the wings. I have covered it up with humility and humor. I have tried anti-depressants and herbal remedies. In spurts, I have tried meditating and connecting with my breath. Other times, I have run so fast and hard my breath gave out. I have hoped it wouldn't return. I have known pain and suffering so deep it renders me,
at times, incapacitated and paralyzed. Many nights, I have whimpered, whined and
moaned like an abandoned dog, while clinging to my love like a child, unable to
place reason and logic within the confines of this experience. Other times, I
have found peace, compassion, and something that resembles acceptance in the
face of devastation. I have marveled at the beauty of his eyes. I have stopped to praise the magnificence of a sunset and scorned it's relinquishing of the light. I have prayed with conviction, understanding and gratitude
and also cursed God’s name for the torment and trauma administered. I have come
to both resent and embrace solitude. With each passing day, I have seen the
notion of “us” slowly slip away, along with a future of promises that will
ultimately be left unfulfilled. I have come to realize we will not have a child,
buy a house, or visit Paris, nor will we grow old in each other’s arms. I have
lost what was probably a false security and sense of myself and come to
recognize the face staring back at me as only a hollow representation of the
person I once loved to be. I have gained weight and lost it. I have been called
brave, heroic, dramatic, emotional, overwhelmed, unstable, beautiful, brilliant and a bitch. I have
seen jobs and projects come together and fall apart. I have seen countless
friends make plans to visit, only to break them. I have made countless plans to
go out with friends, only to break them. In a haze of pill-addicted desperation
and spurts of unprecedented productivity and diligence, I completed a rigorous
MFA program and graduated at the tip-top of my class, far surpassing peers with more ordinary lives. I regard such
accomplishments, not with prestige, but as pathetic ramifications of a life I
never wanted. I struggle to go to sleep and dread waking up. I enjoy quiet
moments of reading and sitting with my love and do my best to absorb the
fragility of time passing, never to return again. I have become "the man of the house." I have watched my dog adapt
to new surroundings, grow old and become more feeble. I have moved into three
new apartments and out of a community I came to link heavily with my own
identity and well-being. I have re-invented myself, torn myself apart, and
repeat. I have hustled and bustled, never taking a break, and pressed on while
silently standing by - watching a life “happen” with no choice or force of
my own doing. If I had a dollar for each time someone said to me something
along the lines of: “I don’t know how you do it, I couldn’t,” I’d be a
millionaire. And no matter how many times I tell them, it’s not really
something you “do” rather it’s just “done” – they will never understand. I
have directed movies about my life’s experiences and shared a carefully
constructed narrative of my life to thousands of people, only now to realize
how my early years of training as an actor paid off, not with a starring role in
a Hollywood blockbuster or on Broadway, but in my ability to disguise myself and totally fool you into thinking “I’m okay” - or even, in fact “great." I have savored our wedding day and survived the first day of hospice. I have made the hardest
decisions of my life and witnessed things that must always remain unspoken. I
have stood in awe at the force and will to live and the determination to
survive and exist even under unexpected and uncertain circumstances, in both
myself and my love. Through the distance of social media, I have read about
others being diagnosed, treated, surviving and dying from cancer. I have over-shared
information about our journey and stopped answering the phones. I have
experienced an outpouring of love and charity by many, while others quickly forgot my name. I have been praised, given awards and put up on a high pedestal with all eyes on me, only to fall, crash and burn while no one was looking. In the last four years, I’ve been through more than
some experience in a lifetime, and all I can surmise at this point in time is
this: I am still here.
Battered and bruised. Weathered and worried. Stronger
and weaker. More alive and deadened.
A walking contradiction of happy
and sad.
I'm not the first person to experience this, feel it, mourn it, nor will I be the last. Over the many years of our existence, one would think our ancestors could have found some remedy by now, to ease us of our existential burden. Yet, here I am. And most certainly, some day, you will be too.
"I can't go on."
"I'll go on."
Wednesday, October 7, 2015
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
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
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
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
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
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
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