If you're here, you likely know some of the story, but due to my need for a brain dump (I'd need one after this hellish, 278-month quarantine even without cancer), let's go on an adventure. I had previously planned to keep this all on the DL. It's getting more difficult to do that and it seems easier to simply update people via letting them into the dark workings of my overwhelmed brain.
After having a few months of pain under my right rib and a sudden fever making me think it wasn't the daily Peloton rides, I headed to the ER with the annoyance that I'd likely have a gall bladder issue. I mean - I do not have time for a gall bladder issue. I have my twentieth round of rewatching Gilmore Girls to do. The ER doc, who is also heir to the Snyder's pretzel dynasty which is something you obviously need to know, ordered an ultrasound and got ready to order up a gall bladder removal.
I should have known when the ultrasound tech asked me if I even still *had* my gall bladder (do people...forget losing their gall bladder?) that something was awry. He sent me back to quite a nice little private waiting room with recliners where, five minutes later, Pretzel Doc rushed over to say, "Uh, so there's a mass that is about the size of both of your kidneys and I'M REALLY CONCERNED." Um, yeah, So am I now, thanks. This is where I tell you all to wear your fucking masks because what COVID means is that my now husband couldn't come sit with me at that point. No one could. So wear your fucking masks.
Luckily, my brother is a nurse practitioner in the Kaiser ER and donned his scrubs on his day off to sneak in and ask some questions I was too stunned to vocalize. He's usually a darkly funny guy. After a couple of cat scans, he wasn't being very funny and I realized I was in trouble. Add in Pretzel Doc telling him, "I've honestly never seen a tumor this large in someone so small," and I demanded that Ativan start flowing. Have you ever had intravenous Ativan? Try it sometime. It's really nice.
A biopsy followed five days of daily Ativan pills and CBD drops later. That part included Fentanyl and that is also really nice. Painless. What wasn't painless was the eleven days of waiting for results. Eleven. Days. Eleven days of everything running through your head that include complicated mathematical formulas that result in either a benign or malignant diagnosis. Who knew I was so good at math.
They came back with "epithilioid sarcoma." Sarcomas are a cancer of the bone, connective tissue or fat/muscle. Mine is a soft tissue type and my tumor is roughly the size of a Coke can, pushing into my diaphragm, liver, a kidney and my inferior vena cava. Which is naturally a huge ass blood vessel we apparently really need to survive. A chest scan and MRI showed that it allegedly hasn't spread anywhere else and doesn't seem to have "tentacles" (ew) into organs. The weird part is that they haven't a single clue where it's coming from. My oncologist and the tumor board recommended surgical removal (the best treatment for sarcoma).
At the end of November, I traveled solo to Houston to get a second opinion at a sarcoma center within MD Anderson Cancer Center. My hope was that they'd agree with Kaiser's recommendation and we'd all go on our merry way to Cancerville. Except that they didn't. They spouted off 1,200 different genes that were or were not presenting in my tumor and decided to call it, "unclassified." Then they said I should get radiation AND chemo before any surgery. My biggest $6,000 takeaway besides, "wow I am fucked," was, "wow that really could have been done in a video appointment."
So what now? There's an incredible surgeon at Kaiser SF who believes she can "resection" (remove) the tumor and who thinks radiation would actually leave too much scar tissue to make the resection viable. All fine and dandy, except that she recently became worried about how much the inferior vena cava (that pesky ass blood vessel) is involved and has referred me to UCSF Medical Center. So now we wait to see what that guy says. The hope is that this thing can come out with clean margins and the least amount of organ coming with it. That being said, epithilioid sarcoma is a very rare and aggressive cancer that doesn't tend to respond to traditional chemotherapy; it tends to metastasize into the lungs and liver and really just be an asshole in general.
So that's wtf happened.