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

Guest Blogger - Caregiver Leslie Trahan

Today is a very special "Mother's Day" guest blog by my dear friend and fellow caregiver in the ALK+ lung cancer world, Leslie Trahan. She's also an incredible mother of three darling children. I can think of no better way to spend "Mother's Day" than by honoring her and Andy's story. They have both helped us out so much and, at times, I literally feel as though she has carried me through this experience. She understands. She's willing to talk and text at 3am when everyone else has gone to bed. She lifts my spirits and together we provide each other encouragement and comfort. I am so thankful for Leslie. In addition, Andy just received great news on Friday that his latest treatment is working tremendously well and "melting the cancer away." Wonderful and well deserved news for this family! Leslie is also an advocate for lc research and funding. Please take the time to read this excerpt of a speech she recently gave in Washington at the Lung Cancer Alliance. 

A little about myself: 36, wife, mother, daughter, sister, friend, SLP by trade. Work with children PreK-6. Stay busy, kids sports, church activities, household, help daddy, help siblings kids.

So here is my story as a caregiver......

My role as a caregiver began with the birth of our first child 8 years ago. What a joy it is to raise a child...to choose that role as a caregiver!!! Andy and I could not get enough of that role. Countless hours were spent feeding, bathing, dressing, changing, rocking, bouncing, singing, and so forth. We did anything it took to make that sweet angel comfortable and happy. Today, We have 3 of these beautiful miracles from God and will move mountains for them. They are our life and our joy!

My role as a caregiver shifted in February 2009 when I suddenly lost my mom and best friend to a massive heart attack. Soon after that tragic night, I found myself taking care of my daddy who had no idea how to live alone while trying to help my baby sister cope with the loss. Andy was my rock, my stronghold, my shoulder to cry on. Some days he had to carry me through. There were days I wasn't sure I would make it, but Andy was always there to keep me going. It was the toughest thing I had ever endured. Little did I know that my future would hold so many more tough moments.

In November 2012, my role as a caregiver would morph once again. Andy began to have severe leg pain making it almost impossible for him to stand. After 3 months of doctor's appointments, 10 days in the hospital and a lymphadenopathy, we finally got an answer...but it wasn't the answer we wanted...It's stage IV non-small cell adenocarcinoma of the lung. It was a relief to find out that Andy tested positive for the ALK mutation, but the hard core facts remained. Survival rates are devastating.  The cancer is inoperable and incurable. Andy will have this disease for the rest of his life. What? Come again? No way! Not Andy! What are we going to do?

I immediately went into fight mode and put on my strong exterior armor. I did everything in my power to lift Andy up and convince him that he WOULD BEAT THIS! I just got things done, but on the inside I was crumbling! I cried every single time I was alone...in my car, at work, in the shower...every time. My life had been completely turned upside down. Responsibilities that were once Andy's became mine doubling my load. Having a sick husband also brought extra duties such as keeping all of his medications straight, making and attending doctor's appointments and scans, and collecting medical records...just to name a few. I worried excessively about him (and still do most of the time), and I have spent many nights watching his chest rise and fall. One of the hardest things to accept was the way it was changing our relationship. Some days it was almost as if I had four children and no husband. I longed for the man I married...my best friend...for that relationship to be normal again. I thought so many times... how can I/we do this?  Who was going to hold me up and give me strength when I was weak? My mom was gone, and I couldn't ask Andy to hold me up. I had to be strong and be there to carry him. I began to search for strength anywhere I could find it.

I would now like to share with you where I have and continue to find strength.  Hopefully at least some of you will relate. I first found strength through prayer, hope, and my faith in God. About two weeks after Andy's diagnosis I broke down (I was by myself of course). I was lost and didn't know what to do so I turned to my Bible, opening it to a random page and verse. What I read was Isaiah 26:4 "Trust in the Lord forever, for the Lord your God is an Eternal Rock." It brought me much strength and comfort that night and for many more days and nights to come as it would be a reoccurring theme throughout this journey.

I also find strength in my mom's famous last words of wisdom and lessons she taught me. She may not physically be on this earth anymore, but she is always with me. I can feel her presence. The lessons she taught me live on, and it gives me great joy to share some of them with you all today. In my opinion my mother was very wise and fair, but also a realist. She would defend her children at all cost, but when one of us was wrong she was the first to reprimand and set us straight. One lesson she taught me growing up is that no one ever said life was going to be fair. It is what it is. You can lie down and become a victim or you can persevere and make the best of every situation. She would often say, "put your big girl panties on and do what you have to do". It was never in a rude or non-sympathetic way...just matter of fact, and I always knew it was driven by love for me. Another lesson she taught me was "attitude is everything"! Those words were printed in bold black letters on a white sheet of paper on our refrigerator. I couldn't ignore it if I wanted to, unless I was willing to starve. lol!  

Now I am a believer in the power of a positive attitude. We try to remain as positive as possible in our house. We maintain the attitude that we can beat this!!! 

The last lesson I would like to share with you is one that my mother said the most often during our time together. Any time I was ever struggling with anything, my mom always reminded me that God has a plan for me. I may not like it or understand it, but one day I will. This has proven to be true in my life to this point. All of my life experiences have molded who I am and taught me very important lessons. These life lessons/words of wisdom from my mom often provide such a great source of strength for me.

Next up...our kids! We live for those little critters! They are our life, our joy! There are no words to express how much we love them. We will do ANYTHING for them. Andy and I strive to make life as normal as possible for them. The last thing we want is for them to look back on their childhood, and the only thing they remember is their daddy had cancer. We will not let that happen. They give us the strength to fight when we don't think we can stand another minute of stress! Their sweet hugs, kisses, and I love yous....

That brings me to our amazing communities...yes that was a plural! We have been blessed with so many wonderful communities of people. My family...blood relatives and in-laws, my work community, my church community, my friends, my cancer community. My siblings and in-laws have been such an essential part of this journey. They have listened to me complain and cry, kept my children during hospital visits and travel, cleaned my house, cooked meals, etc. My father-in-law is a "master" researcher. He has spent countless hours keeping us in the know on the latest research. That has taken a huge burden off of our shoulders. My brother, who is a physician assistant has offered medical advice and translated medical terminology...even in the middle of the night when we couldn't sleep. My baby sister that I mentioned earlier would do ANYTHING for me...and I mean anything! My co-workers and bosses have bent over backwards to work with me and make things as easy as possible. I have the most amazing 3 best friends of 20+ years who are on call 24/7. I know there is nothing I would ask of them that would be too great for them to do. My church community has provided child care, financial support, meals, prayers, and so much more. Our cancer community is da bomb! The "cancer club" is not one you want to be a part of, but what an amazing group of people they are. They offer so much support in a way that no one else can. After all, they know what you are going through and can relate to how you feel. I am sure many of you know what I am talking about. Andy and I have also been able to help others in the cancer community by offering various methods of support. We love to reach out to those who are newly diagnosed and offer to answer questions, give advice, or just listen. We have made some great friendships by doing this! It is such a rewarding experience and it reminds us of how strong we can be.  Wow, our awesome communities...it's all so overwhelming...in a good way.

Finally, I find strength in one of the strongest people I have ever known. I respect him to an infinite power. He is a loving and devoted father and husband. Cancer will not and cannot take his spirit or his will to live. He is the love of my life and soul mate. I cannot imagine life without him.  I'm sure you have figured out by now that he is the one and only ANDY TRAHAN, MY HUSBAND! I have learned over the last two years that I can lean on him and share my feelings with him...the raw, scary feelings. We have always had a very open line of communication. I chose to stop that initially for fear of bringing him down, but soon realized that that was just hurting us both and our relationship with each other. We now find strength in each other, lifting each other up in times of weakness.

Do I wish I could close my eyes, tap my ruby red slippers, return to a time when Andy didn't have cancer? Well, of course! Who wouldn't? But, I, like my mother am a realist. That is not going to happen so I will keep the faith and remain hopeful that Andy will beat this! Through modern medicine and the power of our mighty God, I believe it is possible. I hope you all believe the same. We have good days and bad days, but these are the cards we have been dealt. We will make the best hand possible with them and find the silver lining in all of this. We will do our part to raise awareness and funding for lung cancer in hopes of finding a CURE!

So a little update on Andy. It's 26 months post diagnosis, and he is doing well. He was fortunate to get 22 good months out of his first chemo pill called Xalkori. He has also completed WBR and some radiation to his spine. He also completed 6 rounds of IV chemo (Alimta and Carboplatin) and one round of maintenance Alimta this past February before begining his current chemo pill called Alectinib. This pill will hopefully help protect his central nervous system a little better. For now, he feels great, and for that we are grateful! We have been very fortunate to have two of the best doctors in this business taking care of Andy...Dr. Ross Camidge in Colorado and, as of this past March, Dr. Alice Shaw in Boston. We also have an amazing local oncologist who takes great care of Andy. These 3 docs make an Ace team!

Andy & Leslie

Andy, Leslie, and their beautiful children!

Andy & Leslie in Boston as he entered the Alectinib clinical trial and met with Dr. Shaw.

Andy and Leslie on Capital Hill, meeting with politicians to raise LC awareness. 

Leslie with her baby sister, Catherine, and their beautiful mother.

The Trahan Family - including Karen and Phil (or Big Daddy as we have come to call him - he is amazing when it comes to research and helping me game plan!)

In closing, my hope for each of you is that you will NEVER give up! Believe that you can and will beat this terrible disease. Find the silver lining and try to have a positive attitude. It matters and it helps!!! Let's work together because together we can make a difference!

-Leslie Trahan

Disarray

"I don't know how you do it." Neither do I. 

"What's next?" I really don't know...

"You're so strong." I've never felt so weak.

I feel like my life is in an abysmal state of disarray.

Jon's mother is here (thank God!) and she took him to radiation early this morning. I slept in, loaded down on anxiety meds and in a state of funky dreams (buying pillows and mascara at Target). I woke up to Jon standing by our bed, doubled over in pain. He had just got back from radiation and feels terrible. It was like waking up on a train track just seconds before the front end smashes into your face. Watching your partner suffer and in pain is just the worse pain I have ever felt. The next hour became a flurry of trying to control the pain and get on the phone with the doctor. Due to the whole brain radiation, he is off his chemo pill otherwise known as Zykadia (for the more lung cancer savvy who read this blog). That sucks because the meds that were controlling the cancer neck down have been eliminated, giving room for the cancer there to flare up and do what it so desires. There's a lymph node that we have been watching for a few months. I think it is flaring up and causing him severe stomach pain that wraps around to his back. The pain meds he has now control it for maybe an hour or so... then it rages once again. I'm sitting here writing - what I feel like is fiction as it is so hard to truly believe this is our life - while waiting for the doctor to call back with orders. Stronger pain meds? Radiation to that node? Or what?

Writing calms my nerves.

I've also updated many of you on the Nashville clinical trial that we are eying. Folks, this is still a good option, but I wanted him to get into it as soon as possible. Well, I was reading through the criteria last night and it looks like we have to wait at least 4 weeks before we start it because of radiation. Fuck. (I really hope this language doesn't offend anyone. I know my Aunt Joyce would kill me for writing, saying, or ever thinking it. Aunt Joyce -- it's the strongest word I can find to describe some things and sometimes it makes me feel better to say it. I love you and I'm sorry).

Clinical trials can be a pain. We've never really dealt with them. The last med Jon was on (Zykadia) came to Emory as a clinical trial just as we were starting it - but it was FDA approved one week into his run with it. So, we really don't know what we are dealing with when it comes to trials. There are so many rules and regulations. If you don't fit into one box, you're out. I think the drug would be really helpful and could control this nasty cancer for maybe a long time - both in the chest and brain - and it could "buy us time" (Oh my God, I hate that phrase!) until the next breakthrough comes around the corner (Please, come on!). I have chatted with other lung cancer patients and caregivers (my heroes) who are all doing extremely well on the drug. It's just a matter of getting our hands on it and jumping through all the hurdles.

All this my friends is where the word "battle" comes into play. What we are experiencing now, especially, makes this feel like we are literally on a battlefield. Cancer molecules are being hurled at us and we have lasers (radiation) and grenades (pills) to throw at them. I'm in attack mode and I'm fighting for the most important human creature in my life that will ever be in my life. I don't want to ever run out of ammo.

The doctor still hasn't called back. So many people have asked what they can do to help us. Honestly, I knew we needed financial help to get us through this devastating moment in our lives. I did what I dreaded to do and opened up an online fundraiser. Most of the dread came from denial. I didn't want to be "those" cancer people because that means it is really seriously and ours isn't that serious because Jon is going to be with me forever and ever, amen. Well. He was doing and feeling really well! CT looked stable... but progression popped up in the brain in a mighty way. We knew the drug he was on wasn't going to last for a really long period of time and we are honestly very lucky to have gotten a year out of it. I felt I had no other choice but to open the fundraiser and the results have been absolutely astonishing.

How can I ever thank you? All of you who have so selflessly donated and honestly blown my mind with your generosity. I am speechless. A billion thank yous to the moon and back and then repeat. In approximately 2-3 days, we have met the halfway mark. Friends, neighbors, family, and strangers have given so very much money and I am so thankful! I speak for Jon as well, who is in such a scary place right now. I can't imagine how he is feeling - emotionally and physically. But he thanks you from the bottom of his heart. He knows that so many people have united in the fight for his life and his quality of life. We know we are loved, appreciated, and supported. We are amazed and we are grateful. So I've answered your question of what you can do for us... tell me, how can I ever repay you or tell you how thankful I am for giving one of the greatest gifts and meeting our dire needs? How can I ever express just how thankful I am?

Money can't buy you happiness. The Lord made sure I got that message at a very, very young age as I have never had money and always found a way to be happy without it. And growing up with a Mama as stubborn as mine, it was pretty darn hard to ask for help in the way I had to. I was feeling kinda crappy. But then Jon's mother mentioned needing to leave at the end of this week. Okay, most people hate their mother in laws and complain about this and that. Petty. Well, I need mine. She is an angel. But I also know she needs to get back and take care of Jon's father. After my heart sunk down to my bowel at the thought of her leaving, I remembered the generosity of so many others and how much money we've raised in such a short period of time. Then I didn't feel so bad. No, money can't buy you happiness, but when you are living with cancer it can buy you treatments, doctor consultations out of state with the best of the best, and travel expenses to get the best care available. The fundraiser has given me a sense of empowerment. Especially once she leaves. Because you are all helping us, I know I will have gas money to jump in the car and drive to Atlanta or across the country or to fly halfway around the world and back to get my Jon the best care that he deserves. I don't have to worry about where our next meal is coming from or how I'm going to pay for rent next month. So, again thank you. Thank you for helping us.

And since the doctor still hasn't called, I will write one more paragraph (or two). This blog has given me a channel to be very honest and open about my life as a caregiver. From the very beginning, Jon and I have felt it important to be open and honest about our cancer journey. Why hide it? It is what it is and it may make some people very uncomfortable, but this life and the things that happen to us during it make us who we are. No, it's not what I would have written for myself, but I have learned, and continue to learn each and every day, that I am not in charge. The beauty of our life unfolds around us through the deep pain and struggles we face as human beings and those challenges make us more human. Raw and stripped bare. I've never been good at putting on airs. In my first acting class in college, my dear old soul acting professor Karla Knudson looked into my eyes and said, "You are an honest human being." I was taken aback - at that age I really didn't know who or what I was. She summed me up with a glance. Jon is even more so. I think that's what makes him such a beautiful, strong storyteller. It was tempting to hide or cover up lung cancer when it all began. I thought people might judge him for having that particular type of cancer because of the stigma surrounding it. He has never smoked a day in his life. His lungs should be as healthy as most 20somethings or even more so. But we decided not to hide it and we have been open and honest. And the number one reason, which we have discussed often, for being so open about our struggle is the hope that it will help others who are facing such a challenge in their life. All we've ever wanted to do in our lives is be storytellers. I never thought the story we'd be telling would be our own - so literally - but here we are.

Historically, poets and storytellers have taken the logic of science, or the what, and attempted to uncover the meaning of life, or the why. In ancient Greece, poets literally lead humans to the "watering hole" or Delphic Oracle north of Athens where mortals and gods could drink together in honor of Gaia - the earth goddess - and then Apollo, who was considered the god of poetry among other things. I by no means consider myself a "strong" human being, but if being a storyteller means I can serve a purpose, then I will accept. If I can inspire others to live a fuller, more meaningful life, then I am happy. If our struggles can influence you to hold onto your loved ones tighter, to be more present in the moment, and to complain less, then my heart is full. If our battle with cancer helps just one person - even if it just lets them know that they are not alone - then a big part of my work here on earth is done. And, for that, I am thankful.

Our Medical Fund for Clinical Trial: http://www.gofundme.com/tkr6sc

"Don't Worry, Be Happy" - Bobby McFerrin but also my Papa

Bush - Glycerine. I think this is a really beautiful video.

With love,
Robyn