Friday, August 21, 2015
I'm home; I am resting after flying out to NYC for treatment (yep, what a week). I was able to get my immunotherapy shot, but was also informed that I am dangerously low on my dendritic cells (the part of the white blood cells that boost the immune system and that they use for my treatment). That means I need to head to Germany to engage in an another leukaphresis where they separate my white and red blood cells for harvest. I emailed the clinic just to verify, hoping I could squeak out a few more months before travel, but was graciously informed that it's best to head to Germany ASAP. So, although Dan took off some time for filming, and a few other random days this month, we are hoping that he can take off more time in the next couple of weeks so that he can accompany me for treatment. I kind of see it like a super sexy medical honeymoon. Because there's nothing sexier than life, am I right!?
I'm still on cloud nine from the surprise wedding, and the whirl of my awkward self, filming to share our story. A couple of people have thought I was crazy for being filmed, but I see it as an honor. Our journey has been loud (if you read the blog anyway). It has been hard, and fun, and beautiful, and unexpected, but most of all, it has been an example of following our hearts, of being strong, and true. When we were approached for filming I was hesitant for a little bit, then I thought of the good we could do by sharing what we've gone through. When you get diagnosed with cancer it's like being thrown into a burning ring of fire, and sometimes you can find a way out of the dangerous maze, and sometimes you can't. And it's terrifying. If I wouldn't have explored more than my original option of the neurosurgeon in Wenatchee ("We will put you to sleep and scoop it out."), it is probable that I'd be dead right now - because of the blood clot and dura mater hardening, not to mention the infiltrating nature of the tumor that grew fingers throughout my healthy brain. So much of my healthy brain would be missing - like the controls for my language, and the controls for my physical body. If we wouldn't have researched, and been strategic, and worked tirelessly, it's probable that I wouldn't be alive, or I would be a fraction of the woman I am now.
Why am I alive right now? Why am I not paralyzed any longer on my right side? Why can I read and write and walk and run and research, when originally I couldn't? Why have I been able to overcome so much? Because I am meant to help. I am meant to be a friend to others, to help people navigate and do their best to survive. It is not easy; it's heart breaking. I just received a text today from a brain tumor friend who just found out he is dealing with his second recurrence in less than two years. I want to fix it, but I can't. What I can do is provide solace, and information, and support, and I'm happy to do it. If only I had more power. But the power that I DO have is a voice, and I will broadcast that voice as much as I can to provide information (research, treatments, hope). This cancer life has been a gift of opening my world to amazing people. To immeasurable love and kindness, and at the same time it rips my heart in half. It's bloody and painful, and heart wrenching.
I share my story with the hope that people realize we have choices. That they listen to their hearts, to their intuitions. I hope that people see that in so many things in life we are placed in boxes, on assembly lines (be it treatments, or work, or relationships) but we also have control. That it may be hard, but we can break molds, and surprise ourselves with our own strength.
Monday, August 17, 2015
The toasts were beautiful. The love was better than anything I could dreamt of. When my treatment was halted a couple of weeks ago, I panicked and I wrote this, not knowing if I would die. Little did I know that I would have a wedding a few weeks later - a gift from Justin and Sam from Wayfarer - and all of their elfs (although I really want to sneak all of them into my pocket - they have island souls, the kindness.) I write and I often never share - shocking but true, but this is something I wrote and shared at our surprise wedding. I am grateful for life. I am grateful for Dan's love. I am grateful that we have worked so hard that I am still here. This poured out of my heart on the flight home when I was denied a treatment because of bureaucracy. I didn't know if I would be able to continue my treatment and it terrified me. But I am here, and if anyone needs help that that's why I believe I'm alive. I will help you the best I can.
"During my life there have been so many people that have been gracious, that have been patient. That have been forgiving, and supportive. There are all these beautiful souls that have surrounded me, raised me, protected me. They have enveloped me with love, a cocoon. But when I go home, when the lights are low, and real life hits, Dan has always been there. In those dark moments I am never alone. I get engulfing hugs, big bear embraces. He wipes away my tears, then he cries with me. From the incisions and scabs, and staples and bald days, and my original wordless existence. My lack of humor. The stress he has endured from my inability to hold a fork, or walk on my own. The days when I couldn't lift my own arm to shave, and dan would pick me up and put me in the tub. He would shave me, never with disgust, only with kindness and a flirt here or there. I don't know how I have been so blessed, so blessed that he was attracted to me even at my worst. It still surprises me, but I'll tell you what - I don't take it for granted
I wrote a note before Dan and I ever dated and wildly he fit every single dream. Sometimes life is so big that you can't even describe the love in your heart. And that is how I feel about Danny. My Danny. I've never liked the idea of a person "completing" me, but crap, he does. After eight years I still sense him before he walks into the house. I feel him from afar, as does he to me - I thank god, I thank this Earth, I thank the magic that is life, for that. I've never been so loved and I have never loved so deeply. It's weird, and I know that this doesn't happen for everyone, which makes it even more of a gift, that Dan's heart and mine are so connected that it's inseparable. Linda had no idea about the role that Dan would have in my life. How needed and desired he is. How appreciated. He is my angel. Linda, you gave Dan the gift of life, and that's what Danny gives me everyday. You did that. And I thank you so much."
Sunday, August 16, 2015
I can't believe we pulled this off!! We just threw a "Surprise Wedding" for the most amazing and deserving couple. #tears #bucketlist #mylastdays2 #braincancer #livelikeyouredying #ittakesavilage (literally)A photo posted by Justin Baldoni (@justinbaldoni) on
So Justin Baldoni, and Wayfarer Entertainment just helped me surprise Danny, and my family with a wedding. Everyone thought they were coming for my 35th birthday party, but when they arrived the film crew informed them to please take a seat for our wedding. It's a very long story and it has been incredibly hard for me to keep the secret. It was absolutely unbelievable with all kinds of surprises. Our episode won't air until January or so, and I don't know how much I can divulge, but in the meantime let me just give a few teasers: personalized message and invitation from Pete Carroll (PETE CARROLL!!!!), a gifted Nicole Miller dress from the upcoming 2016 line along with a hand written note, video messages, Vinny's catering, gorgeous flowers, Archie Brooks officiating. Dan and I have been legally married for awhile now but it has been impossible to do a wedding because of our financial responsibilities due to my ongoing medical treatments. The wedding was incredibly small, and I wished I could invite everyone, but Wayfarer hosted it (along with some amazing islanders donating various aspects). It was not our money, so I was just grateful for the opportunity. When people give you gifts you just say thank you, you don't ask to see if you can invite more. It was such a gift, and a beautiful dream that we had always wished for. There were beautiful toasts. There were songs sung, dancing, a little rapping, beautiful toasts, it was hilarious and heartfelt. I can't believe I was able to surprise my parents, Danny, Linda, and all of our guests. It was the most fantastic day!!
The love I have for Danny is the most special thing in my life. I can't wait for the television show to air so that people can celebrate in our love too. They took hours and hours and hours of footage, and I hope I get to see a copy of people's interviews and responses. The whole point of us sharing our story is so that other people can learn from our experience with cancer, that it could help people.
The crew was absolutely amazing, wonderfully kind. They are kind souls with huge hearts. It was an honor to be chosen for this docu-series, and I hope it really helps people. Wayfarer Entertainment gave me the beautiful wedding, but what was even better is that they helped me keep it a secret to surprise Danny and our parents, and all of our friends. That was a gift that I got to give them. Danny was over the moon, along with our friends and family. It was the most heartfelt evening I've ever experienced.
And the biggest thanks is to Libbey & Nige for letting us commandeer their new house which they have lived in for only two weeks. Talk about great friends! That was probably the most magical part of the entire day, that we are so loved by our friends. We are the luckiest people on earth to have such generosity and kindness. I'm still reeling from all of the excitement. In fact, it should be sung from the mountain tops how amazing Becki Day is. She is a complete rockstar wedding planner, problem solver, and connector of people. Without Becki Day navigating this event, it absolutely wouldn't have happened. Who in the world plans a wedding in Friday Harbor in early August, the busiest wedding time of the season, in only two weeks?!?! Two weeks! And it was stunning and seamless. I can't say enough about her work ethic and attention to detail. What a treat for us!!
I'll be sleeping until Wednesday so that I can manage my flight to NYC for my immunotherapy. I'm exhausted. In fact I don't even have a voice, I literally lost it. Hopefully I can rest up and start feeling better within 72 hours. Talking in interviews, emoting and going all the way back to the beginning of this journey to review our trials, was exhausting.
Okay time to sleep. Love and thanks to all. And I'm so sorry that we couldn't invite everyone. It hurts my heart that we had to keep it small, but sometimes that's the only option when you have such a huge network of friends, and supporters.
Tuesday, August 11, 2015
Hey Guys! Thank you for all of the birthday comments, texts, and emails, and phone calls, and Facebook messages! You guys all make me feel deeply loved.
On my birthday Dan surprised me by taking me on a bike ride along the Burke Gilman, which I have run but never rode. Riding bikes on the BG is awesome! I's mostly flat and you can literally ride for miles and miles. It's stunning.
But that's not even the biggest news. One part of the big news is that I am flying back to New York next week, the 19th, for an attempt at another immunotherapy shot. It should be fine though, I'm expecting smooth sailing so to speak.
The next part is that in 24 hours or so, SoulPancake a media/production company ("We create stuff that matters. That opens your heart. That makes you think. Our mission is to help you and your audience figure out what it means to be human and feel damn good doing it. Our brain batter of art, culture, science, philosophy, spirituality, and humor is designed to get people talking, sharing, and engaging with this crazy, exciting, creative journey that is life."), along with WayFarer Entertainment, is sending out a crew to film Danny and I for an episode of a series about people who get diagnosed with cancer. It's kinda crazy, and a huge honor to get to share what we've gone through, and share how we live our lives. My hope is that we can make others feel more comfortable about what they're going through, or have experienced. And that goes for people who have been diagnosed with cancer, and those who haven't.
We all have hard things that pop up in life, and personal stories always help me, so I'm hoping to inspire others and put them at ease. People often ask me how I've been able to do what I've done (defy odds, find new opportunities health wise to live longer, relearn talking, reading, and moving my body) and all I can think of is how important it has been to be stubborn/strong willed, curious, passionate, easily inspired, and easy to laugh. That combo has been a saving grace. I always say this because there are no guarantees, but this type of cancer, the infiltrating astrocytoma is invasive and virtually impossible to survive solely by conventional methods. And since I'm not as hard core as I once was, there is always the possibility that the cancer is growing inside me. It's a very real, very scary reality. But if I just panic and miss the beauty in life, constantly living in complete fear, then what was the point in life? What was the point of me being on Earth? So I try to keep things in perspective. I try to maintain a balance between enjoying life and maintaining my health; constantly oscillating between two worlds. Sometimes they overlap, but often times it is an exercise in control and depravation.
I'm nervous for the film crew, but also excited. It's very surreal, and terrifying letting people come into your life, your home, to see exactly who you are, your mannerisms, your quirks. Clearly I've been doing it for awhile, but it's different when I'm doing the blog. With the blog, I have complete control over editing on what I choose to share in my life. In this situation, I don't. I'm also not a fan of watching myself on video (hence the lack of video blogs). I'm an emoter, a sharer, an open book, but I tend to express myself verbally with the written word. I keep reminding myself that this is only through Sunday, and after that it will all be over. So I need to be in the moment, and have fun and enjoy the oddity that will be getting filmed. I will blink and it will be over. But what will last will the memories, and the documentation of when the show airs. That will be a beautiful treasure.
Sunday, August 2, 2015
I am embarrassed and relieved to report that my headaches were linked to a hormonal influx. I've never had that happen, I've never had such a horrible response to the female way. I don't know if it's because I'm nearing the end of my fertility (more or less) - or at least the norm of fertility.
This Thursday I will be 35.
This Thursday I will have outlived several of my various doctor's expectations on my lifespan. In fack, back in 2011 insurance tried to push me into hospice. According to their calculations I didn't have long to live.
I've come such a long way, learning how to read and write and walk then run.
I have enjoyed every single day. It never mattered if I was in a hospital bed, incapacitated in my own bed, or just the daily grind of trying to survive and enjoy life. I feel so grateful to be here. I am overjoyed every day that I wake up. I love life so much that it's hard for me to sleep, I want to soak it up.
This is not the life that I thought I would live. I never thought I would get diagnosed with cancer at the age of 29, and I never thought - after everything we've gone through - that I would be this capable, and healthy, and happy at 35. As you guys know, these tumors are aggressive and invasive, and I never know if they'll be back, but good God I cherish this life. Every. Single. Moment. Which is why those debilitating headaches were so terrifying. Everyone has their own views on faith, and God, and afterlife, and truthfully, my views evolve and flux. I have no idea what comes next, but my soul tells me that I'm already living in heaven. That I am living in heaven on Earth. I have Angels surrounding me and loving me, and it's you. It's my friends, and my family, and those who love me. So when I get scared about more surgeries, more treatments, more progression, I will remind myself that I am not alone.