UCLA Update 2017

I hesitate to talk about it, because I don't want to exploit the beauty, but on Saturday, because of the Skid Row Carnival of Love, I had the opportunity to meet a man who lives on The streets in LA. 

Dan and I on our way to Skid Row Carnival of Love

We're down here for medical reasons, and I was supposed to spend this weekend relaxing, finding my truth, maybe soaking up some sun, following my intuition, making decisions on what to do for treatment, but when I realized I had an opportunity to connect, for life to not be about me, my own issues, I knew it would make me happier than spending time reading a book, or thinking about life or my own issues. 

Yep, again I realize retrospectively, I'm not taking care of myself. Or am I? I mean, each day we make make decisions, each moment, depending on the pace, on what fulfills us, that which can also heal us.

I wanted to do for others, for Mike my new friend from NC, what I have done for my own grandma, what Dan does for me, I wanted to wash feet. 

There's this raw humanity of touching feet. It's vulnerable, and raw, and for people to open themselves to that private pocket of their life, it's incredibly endearing. That Mike trusted me, and that I could give him human touch.

My god we laughed!! I couldn't deny his quarterback, Cam Newton (who I always refer to as a transformer - have you seen him???), and he kept hollering toward Dan, "Blue 42 - Blue 42. He's a big boy!"

It has been an insane weekend of connecting, and loving, and until last night and today, I was worried about others, and trusting that the universe had my back. That's a wonderful thing, but also dangerous, because we are the only ones who can take care of ourselves. No one can tell me what to do, no one can tell me what is best, I have to find my inner voice, I have to reconnect with what feels right in my soul.

This morning we were told that the areas in my brain are most likely resectable. My god that is GREAT news. Regardless of the reality of a brain surgery. (No small potatoes.) In every moment when I receive complicated news, we immediately spin it. I have lost so many brain tumor friends because their tumors were inoperable, and I recognize the good fortune in my life. 

For now we will focus on removing negative influences, drains, and we will be enforcing a fabulous new protocol that includes a multi-focal awesome new set of rules that focus on laughter, fresh air, connecting, and loving. Sometimes you have to bring it back to the basics, and heal before you can help others. It feels horribly uncomfortable, but I have work to do during these next few weeks until surgery. 

I want to live. I want to learn. I love to love. And to make that happen, I have to focus.

Thank you for loving us, for supporting us, and I am so sorry that I'm not able to respond to everyone - the amazing comments and FB posts, or IG posts, my phone - the texts, calls, emails - they mean SO MUCH to me, they lift me up, which lifts up Dan - because honestly, Dan gets the brunt of carrying the weight. He is the silent hero. I know you see it, you have to. I would be a completely different person without his strength.

And thank you for sending your prayers, and love, after that last post, I swear your love was absolutely palpable! I couldn't even believe it! When I receive that love, it overwhelms my body in a way that I finally calm down, and rest. I laugh more, I feel that energy. So thank you! I just need to heal so that I can give it right back to you, to everyone. 

I Choose To Find Happiness

I've been hiding things from you. 

Bad things. MRI things.

Unfortunately, it appears as if there are three tumors growing now. 

Dan and I have known for a week, but I wasn't ready to vomit this awful news onto you. I realize, because of my own life, that we can only handle so much suffering. We can only handle so much pain, and I never want to be a burden on your soul. That is the last thing I would ever want to give you. Weight.

I only want to fix things, to make people feel better. Even in the grocery store, on the sidewalk, on a phone call with a girlfriend, I look to make someone smile or laugh - to connect. Sometimes it's a challenge, but nothing gives me more satisfaction, than trying to make a situation/attitude better. Not that I'm without mistakes, or poor choices, but I am trying every day to do what I think is right.

It's after midnight, but I can't sleep. I stopped all current treatments because I don't trust or understand what's going on in my body. Treatments can actually initiate tumor growth; there is no easy path. No solid way to address this problem. There are no easy answers. I have not given up hope, I'm just recalibrating. We're hunkering in, planning, looking for educated information, looking to add more professionals to our team.

I have Emma asleep on my legs, and Bing on my chest. I feel connected, three heartbeats. I never REALLY thought this would kill me, or that it would get worse, although it's exactly what the scientific literature has been telling me. I even said to Dan recently, "It's possible that my positive thinking may have been denial." - As these tumor/tumors have been gently penetrating my brain. 

I'm not planning on dying anytime soon, though. Why would I?

Between filling out the tens of pages of patient intake forms for the various new doctor appointments scheduled for next week, I took a 30 min for a bath at noon. I poured a few cups of Epsom salts, dipped a foot, eased, and settled. I found myself lifting my dripping arms from the water (knobby knees sticking out of the shower tub), hot tears running down my face, "Thank you Universe. Thank you God. Thank you for blessing me with so many experiences, for the joy, for the laughter for the connections, for the fresh air, for the EVERYTHING." I added that I am open to all the goodness that the universe brings, and that I am open for healing. That final statement is new. It's a new open door, that I didn't feel worthy of. Why should I be healed when I already have so much? How many gifts does a girl deserve? Surely, I have hit my max already.

I don't know how this world works. I have only my own compass, and my education from others. I am trying to do my best, in the situation I am in. I am laughing with Dan daily. Teasing and connecting with friends deeply. That's life, it's simple, yet profound. It's love. 

I have our sweet animals cuddling me right now, as Dan sleeps in our bed. I can hear his gentle snoring, what a glorious sound! Tonight is a rare occasion, because we always go to bed at the same time, but I fibbed because I needed to cry and I wanted to shelter him. I thank God for the luxury of a guest bed. This beautiful man who gives, and gives, who's love shows zero boundaries. 

I am unwell, but I am not dying. I just need to heal. I will be dead when I'm dead, and I'll deal with it then. For now, I raise my soaking arms to the heavens and give thanks for everything I'm allowed to experience!

Even the shittiest task can be fun. (That was us in the MRI waiting area.)
Choose to be happy, it feels better.

Poof.

My friends keep dying.

Smattered between the 50% off holiday spam emails, are updates from caregivers telling me about loss after loss. Then the upside, the lucky ones if you can call us that, they're coming to me with notices of recurrences, and declines, and paralyzations, and sadness. It's surgeries, and radiation, with chemo complaints. It's all heavy. It's always heavy.

So much sadness.

I am not a timely communicator anymore. I've come to dread my phone, and my computer. I hesitate to connect. I'm a conduit for information, this blog, but it's not without an obvious toll.

Thank you for being patient with my lack of responses to emails, to texts, and unfortunately, I don't see an improvement in my behavior, for clear reasons. I don't want to get swallowed by the sadness, so I must protect myself. That means cutting away on many occasions. Or for long periods of time. And it often means everyone, not just cancer related.

I was blindsided by this diagnosis, and have managed because I've methodically taken one step after the other. I have no idea what I'm doing. I'm just doing the best that I can, in the situation I'm in. I have zero capability to disconnect, or compartmentalize. I just don't have that talent. And for a girl lacking in the department, this muddled, cancer vortex, can completely disintegrate the heart at the soul of the girl.

I want to know what's going on with my friends, I want to fix it all, I want the hurt to go away for everyone. But's not fixable. Not by my hands. So, instead, I grieve like they do, and wish things were different.

Just after Christmas, my longest running brain tumor friend passed away. She and I had the same diagnosis. Even a very similar pathology. The difference? The location of the tumor. I had no idea she was dangerously close to death. And that's what it is in my world. One minute they're here, and the next they're gone. Poof. We're a highly vulnerable bunch.

My friend's lives are sifting through the slats of my fingertips.

I don't write much these days because it would be much the same thing. If I write, I feel, and sometimes, the only thing I want to feel is my love for Dan. And I cling to it tightly. He's my safe place, my lair, my battery charger; my blanket, and my umbrella. He's the halls that reverberate my laughter.

To all of you, to those who will read this, and for those who might not, I love you all. I think about everyone often, I pray for people, and send them love from my heart to theirs. I might not call or text much, or respond even, to your messages, but I love you no less. I'm just doing the best that I can.

So I'll have a good cry for M, and then I will wash my face, put on some layers, and walk that last Christmas gift down to the post office for a tardy mail.

I'm not sure when I'll write again. (Thank you for understanding.)

With love,
Jess