Things are moving fast, but they feel slow. It’s the narcotics, probably. I find myself staring into space, wondering how many minutes I was checked out, and it turns out to have been a couple of seconds.
The biopsy was Monday. They got plenty of bone tissue to sample, more than they wanted, even. The one surgeon said it was as if ‘it wanted to come out. Like it was under pressure.’ Although it had certainly felt as though it was under pressure, I thought this was an unfortunate imagery, evocative of metastasis, or a giant, bony zit. (Sorry. You might want to rethink reading these updates all the way through.)
They did a frozen section right there in the lab. The main surgeon, Dr. Lawrence Menendez, who has over 30 years of experience, told Mark in the waiting room that it looked to him like dedifferentiated chondrosarcoma. Of course they sent the rest to the pathology lab for the official diagnosis. We’ll get that in a few more days.
We had been doing some research on the different possibilities (ugh the internet), and knew that dedifferentiated was the worst case scenario, but everything we found online was at least 5 years out of date. So when pressed, Dr. Menendez said, rather than the actual cell type, he thought in my case it was more important that no other metastases had shown up on the PET CT scan, yet. His off-the-cuff, 30 yrs experience estimate put me at ~65% chance of survival.
He scheduled me for the chemo port to be put in on Monday.
I saw the oncologist, Dr. Sant Chawla, yesterday (See? Fast.) at his office in Santa Monica. Everyone wants to go to him because he’s plugged in to some nifty drug trials. We signed up to get my samples tested to see if I’m lucky enough to be in the 2% of this already rare cancer that shows markers that make it 80% responsive to this new treatment. (There’s a lot of math in cancer.)
Dr. Chawla wanted to be sure we understood that metastases containing even five million cells would still be too small to show up on the PET scan. With my cell type, there’s a 50-60% chance there are already metastases (more math), but at least if they’re that small, they’re more likely to be wiped out by the chemo. As are the tendrils of tumor that are invading the soft tissue in the shoulder.
So the plan is chemo first, to make the tumor small enough so they can chop it out and still save the arm. But we don’t know how many rounds before they see the effect they want. A month? Two months? Dr. Chawla introduced me to a woman there who was entering her 5th year of chemo.
He may have meant it to be reassuring.
(Her case is different, though. Lots of metastases before they even started, and hers were all soft tissue.)
We asked where he put my chances, given what we know so far.
(Mind you, this is way better than what we found on the internet, which was a 5 yr survival of 0-18%. I couldn’t find a 10 yr number. Don’t look this up on the internet. I’m serious.)
I had a good long cry over it yesterday. There will probably be more of those. But I have noticed that the levels of despair correlate closely with how much pain I’m in, which makes it not completely untrue when I told Sarah I was crying because my arm hurt so much.
As a consequence, I’ve been pretty careful with my Dilaudid schedule today. See? I was together enough to write this update.
Besides, yesterday was sooooo long ago. Like, years.
Thank you for all the messages. I haven’t been able to respond to everybody, since typing with one hand is time-consuming and I haven’t figured out voice-to-text on my computer yet. Also, people keep asking things we don’t know the answers to.
Thank you for your patience. And all the help.
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