We are our way to the oncologist at Penn.
This isn’t just a second opinion.

I’m someone whose body would reject an implant and radiation would create such a scar that hEDS would never tolerate it.

I NEED an advocate to demand Cigna pay for “experimental” proton radiation. Surgery, be it lumpectomy or mastectomy is guaranteed. My grief is exponential.

Penn is rumored to have an agreement with Helen Graham Cancer center at CCHS, so I am asking for prayers that the CORRECT oncology team for me is obvious, easy, and doesn’t drain more time.

I went from barely leaving the house to filling my tank a few times a week. The little energy I have goes outside my home. Life means that my kid has to work and love demands she take a full course load next semester.

I’ll be doing radiation alone, primarily, which doesn’t mean I’m anyone other than the millions of others who also do that. I’m an admitted chicken.

This drains every resource we have, but let me tell you where God is all over this …
My family has never been closer in terms of understanding one another and how to support each other.

My chosen family continues to grow.

Healing has restored friendships and displaced others.

My mom is proud of me.

Vanity, sarcasm, and my penchant to hyper focus on the past have all but fled a body failing me.

I don’t sleep much or well, but I feel like a cowardly giant in terms of my integrity and openness.

Some wonder why I live a life of exposure and I can only say that it holds me accountable. It shows the lows so the highs are the celebration of a community desperately seeking joy.

It shows forgiveness in spite of apology and change; even change started out of spite, can be permanent and true.

I lost every minor social encounter since around Covid. As the world healed, my quarantine never stopped.

It turns out, I adore videography, photography, and editing. If God heals this neuropathy and I can feel my fingers again, I hope to improve.

I want to write. I want to save the world and buy them a Coke and hold hands across America and sing We Are the world. I want to pretend one evil man didn’t divide our country. I want to get over it. I want all to feel loved, seen, and valued for exactly the unique human they are. I want them to feel the love of God without intention or malice.

I want to hide and only seek the Misfits. I’m good at loving misfits. I am now in a position of humility with a weird condition making cancer even more complicated and painful. I am a misfit playing grown up, but my ability to mask exhaustion and autism gets more difficult as waves of loss and fear strike home.

Home didn’t feel safe because I had a rageful, grief-driven, humiliation mixed with misunderstanding, meds that would give Dwayne Johnson roid rage, and a crew that watched me dying and becoming nothing as no one watched, but everyone observed.

It’s been almost eleven months of head injury/whiplash investigation plus connective tissue disease work SUDDENLY getting hit by cancer. Maybe cancer explains a lot. Maybe it’s just another thing.

I’m the girl that pain management looks at and says that the opioid epidemic doesn’t apply to me. I get hugs from mean providers who make me call them, “Stephen,” or “Michael.”

I’m a zebra who saw a horse NP and my complicated zebra problems got missed … historically by all. If you hear hoofs, think horse not zebra.

I’m a zebra with cancer. Cancer isn’t cheap and hospitals who charge for parking are monsters.

Angels have shown up and not a soul who has had cancer has not hugged me immediately upon meeting me and learning I’m new to the club. Miss Y’vonne, I mean you. Shelley Krier Stewart, God gave me you after loving me by your mom.

Defeated, weary, broke, and broken down soldiers follow me and have changed their lives for one thing cruelty and love have given me:
FORTITUDE
GRATITUDE
TENACITY

God save the queen.