Trauma Had Overcome Me

For the longest time, I have shoved my feelings, my pain, and my hurt to the deepest recesses of my soul. I stopped blogging because I couldn't fathom being vulnerable anymore. My own mental state was too raw, it had become too fragile, frail, even. 

I would find myself unable to respond to beautiful texts and emails, I physically couldn't budge to lift a finger to type. That doesn't mean that those words, those messages didn't haunt my psyche. I hated myself for feeling paralyzed. I hated that I would panic about my inablilty to respond to so many special, kind, loving souls that just wanted to show me love, but I was trapped in my own suffering. And one day, became the next day, which became months, then what has almost become a year, yet nothing had changed. I couldn't bring myself to respond to any of them. The trauma had overcome me, my pain was a blackness and I couldn't find even a sliver of light.

I have been sheltering myself from the trauma that I have refused to acknowledge, or feel. My coping mechanism has been to put one foot in front of the other and walk, and clean, and cook, and listen to podcasts and organize, and avoid all of my painful memories. I felt like there was no good way to address the magnitude of the 11 years of fear, stress, the bone saws that split my skull so many times, the pain in my skull that never subsides, the struggles to walk without injuring myself, that I can't see out of the side of one eye, or the numbness of my full right side, the raw ache of constant loss. Or my pathetic attempts of holding a pen, or a fork, or cut with a knife, or spell, or find words up in this messy brain. I try to hide my deficits from others because I'm embarrassed and frustrated. But it's always there, traveling everywhere I go, there is no escape, no reprieve. 

The best (cancer) friends I have bonded with, laughed with, fell in love with their strength, their brilliance, only to watch their bodies wither, holding space for the conversations about their imminent  death, the devastation of the loss of their dreams, to watch them struggle to breathe until they die. To watch my ultimate cancer soulmate have her brain get riddled with 10 brain tumors after 11 years of metastatic cancer, the pain, the fear, the defeat. The struggle to find anything that could help, until her body just couldn't function any longer. Then she was just gone. There was nothing I could do. With all of these friends, they just die and I'm left devastated, crushed and often despondent. There is so much anguish, such a loss of camaraderie, of knowingness. With all of their deaths I find myself even further isolated, which pulls me deeper into my mental lair, where I can tuck away my feelings and pretend that I'm not broken. I put on a smile, I become more vague, I brush over any hurt, and then I deflect.  

These 11 years have been a marathon of loss, and I have avoided dealing with the majority of that pain because it doesn't feel good to be sad. I prefer to pivot in uncomfortable situations, to find the good, to put things in a perspective that makes me feel positive, but there has been so much death around me, of best friends, that I stopped being able to find the good. So I shut down and went to the most basic survival mode I could think of. One foot in front of the other. Don't think too deeply. Deflect questions. Downplay my struggles. Hide my pain. Ask people more about them so that I don't have to be vulnerable. Smile. Laugh. 

It worked for several months, maybe even a year or so, but the deep pain has never gone away. In fact, it has just festered, and then I ended up feeling even more isolated because I have a real hard time asking for help, or admitting that I'm struggling. I hate to bring people down, I would rather lift them up, to make them laugh, or bake a loaf of bread for a friend, or lend an ear for what they're going through. But what I've come to realize is that the blog was this beautiful place to express myself, with zero pressure for people to read it. People can read it if they choose, but unlike initiating a conversation with a friend who may or may not be able to support my emotional needs at that time - because face it, we all have a lot of shit going on - perhaps it's time for me to get back to sharing my life for those interested in following along.

It's scary to come back here, to share my deepest, most vulnerable thoughts, the reality of what's going on with my tumor and my treatments, but I am hoping that this can be what it once was, a gift of connection with others. And a place for my raw uncensored private thoughts, and the nuances of my cancer life.

I can't say when I'll be able to respond to any messages, or comments, I really don't want to backtrack into anxiety or fear, I want to work toward a healthy relationship with openness. Thank you for all of the patience and graciousness over this quiet time. I am truly blessed with your love and kindness. The fact that anyone even cares to see how I'm doing is a beautiful gift. Thank you. I will read every comment, even if I don't respond. xo

 

11/01/2020 MRI Results

I just got my MRI results; they popped up with a "DING" in my cell phone notifications. The scan was over a week ago, and usually it takes much longer for results, so a fast turnaround dropped my heart into my tittle toe. Usually, in the medical world, the faster the results, the more concerning the situation. (Not always, but often in my experience.) 

I've been on an experimental drug, and although it clearly seems to be working, you never know when the ball might drop. I mean, I've had to hustle ever since I was diagnosed, ten years ago, so the idea of something really working is completely foreign. But it truly is working! My tumor has not grown since May of 2019. Call that what you will, but it feels like a freaking miracle!!!

For the record, I tracked this drug for over 6 years before I could access it. No joke. I have been calling and emailing the drug company to see if they participated in compassionate use yet. I watched it because although it's for a different type of cancer, the drug targets a mutation that I share. I have flown across the country a few times tying to gain access. I have tried to impress doctors, or tried to see if I could get access through mutual connections. I have turned down risky treatments, hoping for access for this safer option. I have been told that I had to do a 5th brain surgery in order to access this drug. I was told that the drug is too expensive ($25,000/mo). Thankfully, all of the hard work, the literal years and years, the doggedness, the fear, the listening to my gut when I was being pressured to tow the medical "line", are paying off. I never know how long the good new will last, but damn if I'm not going to have a glass of champagne tonight, and run in the rain in the morning!  

I'm clearly rusty with my delivery/writing skills, but I wanted to give you an update, and thank everyone for sharing this journey with us. For loving and supporting us. The next MRI will be in January or February. 

I am THRILLED to get the honor - and as cheesy as it is, it is a true honor - to get to be here, and feel sore from a workout, or try a new recipe, or laugh at my dog when she barks in her sleep. 

I still get to be here!!!! I am still here, and life is such a gift.

First patient MRI of the day, then a celebratory lap around Green Lake

Never had any sort of "cool" factor. (Ha!)