Monthly Archives

August 2015

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Germany Again? Excellent!

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…

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More of Our Love. I don’t want it to end. Ever.

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…

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Surprise Wedding

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 Aug 15, 2015 at 5:48pm PDT 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…

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A Film Crew?

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…

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Heaven on Earth

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…

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