8.11.2015

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 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.

8.02.2015

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 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. 

7.30.2015

Progressive Headaches

Yesterday and today, starting in the early afternoon, I have been getting progressive headaches. By the end of the night it hurts so bad that my eyes start watering - just tears streaming down my face. It's on the left hand side, the tumor side, and it throbs in the back, the tumor spot. It hurts so bad. And by the end of the night, like right now, it's on fire. I have no idea why it would progress like this. I'm scared. Has anyone else had anything like it? Especially tumor folks? I wouldn't be so afraid if not for the location. When I push down on the "soft spot" in the back of my skull where the incision starts, it lessons the pain a little. But that spot has always hurt to the touch so I don't know if adding the pain of a new location is just distracting me. 

Please let this not be a recurrence.

Please let this be a fluke. 

Please make it stop.

Nothing helps. Not water. Not asprin. Not anti-inflammatories. None of my supplements. Not rest. I'm lost.

Related Posts Plugin for WordPress, Blogger...
Back to Top