The level set

Good company in a journey makes the way seem shorter. — Izaak Walton

The backstory

I’ve made it into 1% — though not the one that most people want to be a part of. On Saturday, February 10th, I found out that I have sarcoma, a rare type of cancer that occurs in 1% of all adult cancers.

I’d gotten the flu at the end of December, accompanied by a bad cough. The other symptoms went away, but the cough remained and I had a constant pain on the right side of my abdomen below my ribs. It felt to me like the netting holding my guts in had come loose, and that when I moved, my insides were being pulled around.

“My guts,” I would moan, as I walked around the house with a blanket wrapped tightly around my trunk for support. (I added that part in for a potential television dramatization later.)

Multiple trips to doctors and a panel of normal test results pointed to a best guess that I had strained something from coughing so much, but my PCP ordered a CT scan just in case. The insurance company wasn’t having it though — two weeks went by and it still wasn’t approved.

Last Monday, I felt worse. The pain intensified, I felt nauseous and had a temperature.  I went to Sharp Urgent Care, where they suggested I go to Scripps ER, the nearest emergency room, to try to get a CT. I got the CT and it showed a 10 cm mass touching my right kidney, adrenal gland, and inferior vena cava.

They admitted me to the hospital, and on Tuesday I had a biopsy. On Saturday I got a call that it was confirmed to be cancer, but not many more details. Over the weekend, as reports came in, and through discussions with many doctor friends and family, things became a little clearer.

What we know

Sarcoma can be complicated to diagnose and treat, so here’s the information and leading theories we are currently working with:

Preliminary pathology

Suggestive of leiomyosarcoma, with possibility of a dedifferentiated lipsarcoma. This means most likely a cancer of smooth muscle cells.

CT

10.1 cm mass pushing my right kidney downward and my right adrenal gland upward, and pressing up against the inferior vena cava. Could represent a dedifferentiated liposarcoma, pleomorphic liposarcoma, leiomyosarcoma, or malignant fibrous histiocytoma.

Treatment plan

Because sarcomas are so uncommon, outcomes are drastically better for sarcoma patients who are treated at a sarcoma center of excellence. As luck would have it, UCSD Moores Center is in my back yard, and I’ve been referred there to a surgical oncologist and medical oncologist specializing in sarcoma.

The heroes

It’s been a long week. But none of this progress could have been possible without the countless silent heroes supporting us along the way: the friends and family who are doctors or know doctors from California to New York who spent time researching sarcomas, looking at my scans and pathology reports, and reaching out to colleagues to vet out local doctors and get me in front of the best resources possible. The friends who have driven our kids to and from school and practices, and visited a lame version of me in the hospital and brought trashy magazines. The neighbors who brought us amazing meals and treats. The clients who relentlessly texted their concern, wanting coming out to San Diego to support me. The people who put me on prayer chains on churches across the country. The friend who also has cancer who insisted on setting up a meal train for me. The colleagues who took on more at work so that I could focus on my health. The community that cried with me and then reminded me that I would be able to do this, and that with God, all things are possible.

I am humbled by you all, and don’t know how to begin to thank you. Except to say, thank you. My biggest fear when I found out about the cancer was that I would be a burden to my friends and family. Thank you all for welcoming me as a burden.

Through this all, I’ve seen signs of providence. The day I was admitted to the hospital, a high school friend I hadn’t seen since 1989 started working at the same hospital. (“Seriously, you go through such lengths just to avoid having dinner with me,” he said. Or maybe I was way too eager to see him.) This weekend another friend, a sarcoma survivor will be in town.

This past week has been rough. But now that I have access to data and an action plan, and Team Best Friends and Family in the World on my side, I’m ready face it. Starting to plan the Suck It, Sarcoma party after this is all over.

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