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

   
   

   
   

And Finally... An Update

So many thoughts running through my mind tonight.

This is a long one with lots to update so get ready...

Number one, I am exhausted. I've finished my first year of graduate school and we premiered our short film, Nirvana tonight. For weeks, I've been thinking about this night. Specifically, I've been thinking about this moment - having completed it all. I felt like I was running a marathon and this night is my finish line. On top of school, we've been juggling a few other projects and, oh yeah, managing Jonathan's health and trying to figure out next steps. Now that this moment is finally here, all I can do is breathe a sigh of relief and thank all the powers that be for getting me here. We did it!

With the help of so many friends and family, we flew to Boston last week to meet with Dr. Alice Shaw - the best of the best when it comes to lung cancer. She lived up to our very high expectations. She was kind and very understanding. We feel blessed to have her join our team of doctors. So, I will try to condense a lot of information into a brief update. To sum it all up, we feel pretty good about our next treatment plans. We are, of course, scared, but hopeful that we can get back on track.

Jonathan's insurance doesn't pay for phase 1 trials. The drug we want to get next is closing its phase 1 trial and moving into phase 2 this summer. We think we can get the insurance to cover a phase 2 trial. Although we have raised a great amount of money that will help us through the future treatment plans, it is nothing compared to actual hospital costs, so getting our insurance to cover most of the treatment, if not all is essential. It's all so complicated, frustrating, upsetting, and stressful, but Dr. Shaw set forth a good plan. Her confidence helped calm our nerves as well.

Jonathan will enter chemotherapy next week. The chemo regime seems manageable and we have known others who have done this treatment with great success. He'll go in for infusion one day every three weeks and the therapy proves to have good results in the brain (a trouble area for us). If chemo works and manages the cancer, he will stay on it. For some, this chemo has kept the cancer stable for a few months and, for others, a few years. There is no way to know. Of course, we want one treatment to work as long as possible. When it stops working, we will then switch over to the clinical trial (or 3rd generation pfizer drug for those of you who are LC savvy). Dr. Shaw's confidence in this plan made us feel really good. Plus, she said there are other trials that could help us in the future. She made us feel very hopeful. So much in fact I was thinking of moving to Boston for a while there...

It was really hard to come back around to chemo. A part of me thinks of it as a last ditch effort, but that's not true. We can use it as a bridge to the next drug. We just had such a bad experience of chemo the first time when Jonathan was misdiagnosed. But, we have to do what we have to do. I'm always saying I have to "let go," but it's not something you can just do and be done with it. You "let go" continuously. Day after day. Moment after moment. You have to keep letting go and believe. I believe he will feel well again. Seeing him in pain over the past few weeks has hurt my heart so much. But seeing his courage brings me to my knees. Days have been dark and painful. Some nights I've cried so hard I thought my ribs were going to break. Getting through classes and assignments proved to be very difficult. I honestly thought I would crumble. Yet, here I am. My friends and family have carried me through. All those who have donated to our medical fund lift my head out of despair. We have savings now that we can dip into whenever we need to get on a plane to see a doctor or start a new trial in Boston or Nashville or wherever. I feel the power of community and family now more than ever. I thank God and the universe for all those who have helped us and I open myself up to opportunities where I may pay it forward and do the same for others in need.

Screening Nirvana tonight was the perfect ending to the week and the school year. Jonathan has created a beautiful, poetic film that emanates honesty and the raw emotions he has gone through as a cancer survivor. After the screening, we came home and he just cried - overcome with emotions of the night. I stand in awe of the person he has become. I am so proud of him. Selfishly, I still wish this wasn't our life, but I need to stop with that and come to terms with it. This experience has transformed him into such a thoughtful, whole, soulful human being. When he experiences immense pain from the cancer, I watch him close his eyes and breathe slowly, in and out. Meditating. I know it's not fair, but as I observe him, I am learning to accept. This suffering is ours to endure. And by going through it, we are fulfilling a part of our mission on earth. You don't go through what you go through for nothing. All the films that we make or stories that we write won't be about cancer, but they will certainly be infused with the knowledge, wisdom, and awareness we've obtained over the past 2 years.

And now that I have given you a thorough update, I am going to take a much needed break - if life allows it. This summer, I want to live life simply. I want to get back to myself. I want to spend my days reading books, biographies, screenplays, and memoirs. I want to catch up on my favorite tv shows and continue binge watching shows like 3rd Rock from the Sun, Gilmore Girls, and Californication. I want to watch classic old movies both at home and in theaters. I want to go to the drive in. I want to write short stories and poetry (a few that I may post if I'm feeling confident) and finally dive into the second draft of my feature screenplay. I want to listen to good music and maybe take a trip to the beach. I want to curl up on the couch with my man and my puppy with candles lit and the windows up. I want to sit on the porch during a thunder storm and pick blueberries on Sunday. I want to go to the farmer's market and cook big meals. I want to lay in the grass looking up at the clouds and run around bare-footed. I want to go for long walks and get back into yoga. I want to (finally) go to the aquarium and visit the High Museum again. I want to do all this and more with Jon. I want him to feel well and I want us to enjoy spending time together. I want to encourage you all to do the same. Allow yourself to embrace the laziness of summer. Stretch out and let yourself just be.

Cool things that happened:

Our Medical Fund was mentioned on Nora Purmort's blog HERE. She sent me such a sweet email saying that so many of our friends reached out to her suggesting she add our fundraiser to her monthly list. Nora is my personal hero. Take a moment to look her up. Her husband passed away from cancer 6 months ago. He also revealed his true identity as Spiderman in his obituary HERE. She is raising their precious little boy. She is an incredible writer and has a book deal in the works. She helps so many people and has started listing fundraisers for those in need through her blog. An amazing human being if there ever was one.

We were interviewed by WABE (Atlanta's NPR station) about Nirvana. Listen to it HERE.

In Boston... 

Oh, and Harper made this face...

With love,
Robyn

To Boston

Last Friday left me pretty frustrated as I was being told our insurance wouldn't cover the out of state clinical trial in Nashville. We did our best to put everything out of mind over weekend as all our plans were put on hold. Yesterday, I woke up to great news letting us know that our insurance will cover a doctor's visit to Mass General Hospital in Boston to see Dr. Alice Shaw. Absolutely wonderful news! Not only is Dr. Shaw one of the best oncologist in the world for this specific type of cancer, Mass General will be an option for us as far as clinical trials go. Between our insurance covering the doctor and the drug company covering the cost of the pills, the big expenses should be covered. Tomorrow morning, we will board a plane for Boston and meet with Shaw Thursday morning. By the time we return, hopefully we will have a new treatment plan in place!

We really couldn't do it without the support of all of our friends, family, neighbors, fellow cancer survivors and caregivers, and even strangers! Your outpouring of love has warmed our hearts and helps us cover the finances of travel, that will surely add up. We are so very thankful for you all! We are learning as we go along. As I was telling someone over the weekend, we honestly have no idea how to deal with this. We truly are figuring it all out. As two twenty-somethings, we were just figuring out where we wanted to live and what we wanted to do in life. I didn't think twice about insurance plans and coverage. So thank you all for helping us figure it out. I have so many people to turn to for advice. This really helps me keep this stress off of Jon, so that he can focus on healing.

I'll keep you updated as we figure everything out. Thank you for caring and carrying us through this difficult path. We appreciate it so much!

Love, 

Robyn

Hope

I wanted to send a brief update and thank everyone again for the tremendous support and love we've been given. The past couple of weeks have been very difficult, but we are still fighting hard.

Today, Jon completed his last session of whole brain radiation. It was really tough going in every day for 10 days, but he is feeling relatively well. He is tired and that could escalate over the next few days, but the doctors are very happy with his response. We go back for a MRI brain scan in four weeks to see if the radiation is working.

Further, we are looking at several clinical trials and have plans to consult with Dr. Alice Shaw. She is considered the best of the best when it comes to this specific type of cancer, so we are very hopeful in getting to meet with her and discuss future treatment options. There is hope in that others are doing really well on these prospective clinical trials and we ask for guidance on finding the right path for us right now. In order to do this, we will need to travel to Boston first, then possibly to a trial site in Nashville or elsewhere. For all those who have contributed and continue to contribute to our medical fund, I want you to know that without your support, this would not be possible. On our own, we do well to make rent and get groceries - like most struggling artists our age. We could never afford to travel for treatments, but because of you, we feel more empowered to get the care he needs. From the bottom of our hearts, thank you. Thank you so very much! We could never tell you how much your support means to us and the impact it has had on our lives. You are all loved and we are grateful.

Other than the going in and out of Emory and the fatigue, Jon is as sweet, loving, spiritual, and optimistic as ever. I know he has to be scared, but sometimes I wonder if he really is. He has such a beautiful outlook on life. We know all too much the temporal nature of this life, and while I get lost in the sadness of this, he continuously finds beauty and joy. Together, we can make a minute stretch into an hour, as we've learned to make the most of every single second. I can look into his eyes and forget every single pain I've felt from cancer. Every tear. I wish I could make it go away or I wish I could go back and live the last ten years all over again... but I can't. I just have to find the hope in the here and the now.

Finally, I just want to say thank you for all the little messages you wrote in on the Go Fund Me website when you donated. Some told us to "Keep Fighting" which made us feel strong. Others wrote personal stories and experiences they've dealt with in terms of cancer, these made us feel less alone. Thank you for your solidarity in this very human struggle. You are all in my thoughts and prayers as we carry each other through.

Love,
Robyn