My next MRI is coming up. Since the spot on my scan in January, I’ve had MRI’s every two months this year. I’m glad they are keeping a close eye on things, but it’s also a lot. A lot of money. A lot of time.
In June, my new neuro-oncologist, Dr. Trevino, told me I had a stable scan. The spot from January is still there but it didn’t grow, which they call stable. Then he took a deep breath and said he had more news, “I’m moving to Chicago because my partner can’t get work here and it’s been over three years.” My second doctor to leave within six months!
We felt the floor drop away from us. From far away I hear, “It’s great you have private insurance because they’ll cover out of state care, unlike my patients who have Medicaid. I’m going to refer you to a doctor I like at MD Anderson in Houston and you should reach back out to Duke. There is one last neuro-oncologist here but she is going to leave too if she gets all of my patients.”
My mind reeled with the logistics of going to a city-sized hospital like MD Anderson. I was there to support my friend and her sweet young kid. It was so intimidating. I thought of surgeries far away, they don’t provide housing. You can’t fly for a while after brain surgery. A drive would be too painful at first also. Would we have to pay for a flight and hotel or crash at some friend of a friend’s house for my MRI’s every two months? Having care close to home has made it easier to live between scans and not think about them much at all. After being “spoiled” by getting care at a hospital ten minutes away, Houston or Duke feel difficult to wrap my head around. What a grueling and dehumanizing system.
Well, we called the local doctor anyway. She says she is not leaving and is happy to see me. I also reached out to Duke and followed up on the referral to MD Anderson. Duke has a system where each evening, the fancy doctor there looks at scans of potential new patients and calls them for a quick recommendation. He told me as SOON as the spot changes to go see him at Duke or to go to MD Anderson, that the New Orleans hospitals will never be on par with a “Brain Cancer Center.” His opinion keeps rattling around in my head. There’s also research that shows staying close to home for care has immense mental health benefits. For now, we are getting my next scan locally.
After the bureaucratic emotional (that should be a word, bureaucremotional?) exhaustion of phone calls and emails to decide which doctor to assign my care to next, I am incredibly angry at the whole system. This may be stating the obvious, but it’s not fun to get calls from cancer centers. Print out blurry records release forms. Submit paperwork for my MRI images disks to be burnt and mailed (they never arrive). The entire onus is on us to figure this out. The medical system in the United States is so fragmented, it feels like a part time job to handle the antiquated logistical hoops of sharing records and scheduling appointments. And we are lucky to have insurance, savings, and friends and family for support - much more of a safety net than many of the people I’ve met in cancer centers down here. It all feels, once again, like in this society we are nothing but consumers. We shop for care. We get ourselves to wherever we can afford to go.
It is a lot.
Meanwhile on an entirely different note…I watched the “Having Fun with Self Mythology” comic workshop by a wonderful comic artist who I’ve mentioned before, Ellen O’Grady.
Ellen talks about how myths are a tool to help us understand ourselves and the world. She suggested we play with cultural myths and to consider the parts of ourselves we like less and other aspects we’d like to invite in. Using the example of the story of Noah’s Arc, she talked about what a poor response to climate change that story is, to ignore those outside the arc. She made a card for the raven, who leaves the arc never to return, unlike the dove who famously comes back:
It reminded me of when I’d look through the deck of animal cards my Dad had. I remember looking up the page on snakes after I had so many snake dreams before and after he died. Snakes are about transformation, a shedding of skin.
I remember, after my brain surgery and dramatic diagnosis, being compared to the Phoenix superhero, Jesus with a crown of thorns, an angel. All of those comparisons were given by strangers who somehow sought me out to talk to. I thought of myself as a kind of Oedipus in the hospital because there were days when I could barely open my eyes, and yet I talked constantly.
I decided to make my first batch of animal-inspired traits that I have or want to call-in more.
Thinking of Dad, who died twenty-one years ago, almost half my lifetime now. Phew. I’ve been listening to this album he loved, among many. He was a talented musician.
Roxy Music’s “More Than This,” I love the lines:
Like a dream in the night
Who can say where we're going
Love allaya’ll
through time
& space
xo
Cassie
Cassie, I love how you've drawn the animals and traits that you want to call in. Really inspiring. Your story of hardship in this system we have, of even the worst kind of unwanted consumerism, is heartbreaking while also bringing strength to those of us who read it. You are our animal tarot card.
No earthly words can express how profoundly I breathed in your self mythologized post. OK… maybe a few…pissed off, angry, rage-filled at a medical system that requires tenderly vulnerable people to make a broken system work for them.
Outside of this, there aren’t words, but there is the energy of healing vibes which comes through our Source of Being that I send your way. And Love.