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 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.

My Inner Coward

My favorite photo of Chicago. Matt and my gummy bear race in his, Miriam and Nate's room. It's fun to laugh with friends that we've known since we were little. Matt & Nate lived next door since the time I was in middle school. I remember, from time to time - when I was lucky - getting rides home from school from the neighbor boys, saving me from the one mile walk along the dirt road. The Wight brothers. They were always down for a little basketball at their place, or mine, you would hear a ball bouncing and it was on. I have so many amazing memories in Friday Harbor. Sometimes I wish I could go back in time and relive it all over again. Back to a time when my biggest concern was earning my driver's license.

I'm writing another post because I can't sleep. I feel like I have adrenaline bursting through my veins and nausea, along with dread, fear, and some sadness. I am one of those girls that is walking with the weight of the world on her shoulders. One of my favorite TV shows is called Parenthood. Dan can't stand it because it seems too realistic, but for me that's exactly what draws me in. One of my favorite things in life is watching human dynamics, and relationships, ebb and evolve. I'm in a vulnerable place right now, inching toward the knife, again attending appointment after appointment, MRI after MRI, reality into reality, deeper I go. In my show one of the characters has been diagnosed with breast cancer and the storyline stirs up so many emotions. It makes me confused, and reminds me of so many things. I find myself watching with tears running down my face. It feels cathartic and yet masochistic.

I am terrified of undergoing another brain surgery. I am scared for my head, all my little happily rebellious hair follicles, the scalp, the skin, the scar, the skull, the dura mater, the meninges, my brain tissue, oh wow, my poor body. Last time I went under the knife it was not an option. This time, I worry that I might regret walking into this. It could cure me but it could also kill me. That is a heavy burden and it's mine to bear. There are craniotomies performed all the time, hundreds perhaps thousands, I'm sure, most days of the week all over the country. I love hearing success stories, but unfortunately, I hear mostly those of horror. And with my history of complications, I feel as if I have plenty of reason to be concerned. I feel as if I am in my weakest point, that my warrior spirit is at an all time low. I'm still happy and enjoying my life, I'm laughing a lot, but deep in my soul it's stormy.

I don't need anyone to fluff me up and build my confidence if it isn't genuine, but if you could be strong for me, I would greatly appreciate it. I am unable to bear more than my load, and I'm sorry for that. I wish I could be stronger.