Here We Go Strong
Today’s Monday Musics comes with a story. It’s a story that I’ve been hesitant to share and comes with some weight, not the heaviest of weights, but a little extra drag. I suppose these weighty stories are necessary parts of life and our role as humans is to experience them fully, breathing in all the funny discomforts, tearing up when our heart goes weak and gleefully chuckling when the inevitable joy peeks through.
At 1am on the 29th of June, I was in bed with a serious fever when my body was overtaken with what felt like a muscle spasm in my right leg and turned into a full blown seizure. I tried to breathe down the spasm as I felt my body tense up my right side and over to the left, my frame fully flexing, the muscles and bones starting to crack as I became terrified, unable to move. All I could think was I need to fall off this bed, I am so close to the edge, if I can fall off maybe I will break this spell. Somehow I did make it off the edge of my bed, falling with a thud and losing consciousness mid drop.
Cassandra heard my fall and woke from the other room where she was snoozing with Ezi and avoiding my feverish heat. She waited a few seconds for me to get up and deal with whatever loud noise had just erupted and when I didn’t make a sound she came into my room to find me face down on the floor. I was breathing fitfully and slowly came back to consciousness as she calmly told me to relax and breathe, simultaneously dialing 911.
A few minutes later my room was filled with 4 burly firemen who took my vitals, cooled me down from my temperature of 103 and insisted on taking me to the hospital in response to what seemed to them like Flu symptoms. I was not ready to move, feeling like I would puke if I got up but they were anxious to get on with their night so I slowly got back onto my bed and gave them permission to leave, feeling a bit more coherent as my fever broke. Cassandra and I stayed up for a bit, relaxing in bed and cooling down as she massaged my super tense leg and foot. Somehow Ezi, Cassandra’s 2 year old, slept through the whole thing.
The next morning I still had very limited mobility in my right foot and we decided to go to Urgent Care. Turns out if you show up at Urgent Care saying you just had a seizure you’ll very likely get to the front of the line and I was rushed in to see a doctor who ordered a Cat Scan and some blood tests. When the doctor came back with the scan results she entered the room saying ‘Wanna see something cool??!!’ and then promptly left to take a phone call with the Neurologist, leaving my scans up on the computer looking something like this:
We deduced there was something 25.9mm in my brain, and that must have been ‘the cool thing’ she was referring to. When the Doctor came back she explained there seemed to be a ‘mass’ in my head, perhaps a slow growth tumor putting pressure on my brain and affecting movement in my right foot although an MRI would be necessary to get more information. She said these things were standard to remove and the doctor would just ‘scoop it out like a bit of flan’.
Cassandra and I began planning our flan party as the Ambulance drivers appeared to hook up an IV and take me directly to the ER so I’d get a fast track to the MRI. They strapped me down so I wouldn’t ‘have a seizure on them’ and had me pee in a bottle since I was on ‘seizure watch’ and couldn’t go to the toilet on my own.
En route to the ER I texted my mom ‘When do you leave?’ as she and dad were at Logan Airport about to take off for a 2 week bike trip in Bali to celebrate their anniversary. She told me their flight was delayed so I took a deep breath and called them to share the news. I had what seemed to be a ‘Slow Growth Glioma’ that was about 2cm x 3cm x 5cm in the upper left side of my brain. It had caused the seizure and was putting pressure on my motor cortex affecting right foot mobility. They were shocked and emotional but quickly began changing their plans to come out to LA to meet me in the hospital to help me decide next steps. When I got to the ER I called my bro and his wife Kate to share the news.
After a night in the hospital where Kaiser took great care of me, gave me an an MRI and hosted some serious conversations with Neurologists, Oncologists and Neurosurgeons, we coordinated a plan of treatment where I would have brain surgery in Boston at Mass General Hospital and then return to LA after recovery for follow up treatment as needed.
The coordination effort to introduce my surgeon, get the right support from Kaiser and schedule my treatment was nothing short of miraculous and I am infinitely grateful to my friends, doctors and the Kaiser leadership for supporting this plan. I meet with my surgeon on Wednesday and go into the operating room for surgery on Friday. I will very likely be awake during the procedure. The surgeon will take out as much as he can and then do some tests on the tumor to learn more about what follow up treatment will be necessary. Perhaps he’ll even let me have a bit of the flan as a keepsake. Please send positive healing vibes my way on Friday.
This has all happened very quickly and I am still processing what it means and what lessons I can take away from the experience. I am optimistic I will get through this and recover quickly and am kinda excited about having my brain cut open while I’m awake. I feel incredibly supported by friends and family and am so grateful to have such a deep community rallying behind me as I go through this experience.
Important note: If you are noticing weird things in your body please get them checked out, I thought my foot issues were just muscle stuff but it turned out to be brain stuff! Don’t let a seizure be your indication that something is wrong, they’re not fun.
Second important note: Take a moment to bask in the glory of your body, your health, your breath. You are a functioning being, present, aware, reading, thriving. What a gift this life is, breath it in and enjoy!
Last note: I‘d love to hear from you and have been sharing my physical address if you’re open to sending snail mail, just ask me and I’ll send. I’d also love to hear your stories. Have you experienced a clarifying moment or feeling that brought you into your heart and washed away the distractions to show what’s really important in your life? This is definitely one of those moments for me.
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So Monday Musics…. I posted the lyrics to this week’s song above and enlisted my parents (back up band) to join me in singing this one from the deck of our New Hampshire house this weekend. There’s so many lessons I’m learning and I know there will be many more coming through as I go through surgery and recovery.
Right now the big lesson is to allow. I am being forced to accept what is, to accept being taken care of which is not normal for me, to accept what treatment and surgery will bring, to accept my diagnosis and the steps necessary to regain my full health. When writing this song I kept feeling that it was all about just letting the lessons be, even if they’re heavy and dark, there’s so much light and love shining through when we continue to move forward, ‘let motion take you brother, one foot in front of the other, no need to choose a direction, just let the truth set in.’
Beyond that I am seeing so much love being reflected back at me. Every person I share this story with drops deeply into their hearts, they radiate such immense love and compassion, I am in awe at the human capacity for love and experiencing how real it is, what deep truth exists through it all. We are mortal beings, our health is not always intact, but as we support one another and connect fully from our hearts, we have the capacity to heal each other and the world.
I go into this week prepared and supported, moved to tears at the capacity for us to resonate love and light through our bodies, join me this week in bringing your love to every moment and every interaction, and together lets sing:
Here we go forward
Here we go on
Here we go together
Here we go strong