There are about fifty different kinds of sarcomas, each of which would be treated differently, and mine is likely to be between two different types. So while they’re pretty confident that it’s sarcoma, they aren’t sure if leiomyosarcoma, or dedifferentiated liposarcoma. I’m impatient so I don’t handle the uncertainty well. It’s kind of like when you’re pregnant, and you stare down at your belly wondering, is this going to be a boy or a girl? Except with this it’s more like, will it be a cat or a lizard? And which is better to have living inside of you, cat or lizard?
We met with the surgical oncologist today, and the basic gist is this: whether it’s a cat or a lizard, it’s gonna take a major run at your insides.
What we know
The surgeon said that the cancer is on the aggressive side, and likely to be high grade. High Ki-67 proliferation rate. Neither of those are really anything to cheer about.
If it’s leiomyosarcoma
We might treat first with chemo to get the cancer under control, and then with surgery. I didn’t realize how aggressive the surgery was going to be: they would remove my kidney (ok, only need one), adrenal gland (guess I only need one), part of my liver (apparently you can take out up to 80% of it), and have a transplant surgeon on hand to help reconstruct the inferior vena cava. That is a lot of guts to take out.
There may be a role for radiation, but there is more of a worry of distant spread than localized, so maybe not.
If it’s dedifferentiated liposarcoma
Then it doesn’t respond as well to chemotherapy, and we would go straight to surgery. Likely to have to remove fewer organs, but there are other concerns like metastatic disease (spread to other parts of body).
- Get CT scan of chest, abdomen and pelvis.
- Get appointment and meet with sarcoma medical oncologist.
- Get biopsy samples from Scripps, and have UCSD pathology take a look.
- Get a name for this thing and start treatment.
The bright side
I’m working really hard to stay positive because I’m going to have to have a lot of stamina to keep it all together when my guts are on the table. So I’m going to make myself keep a list of all the good things that have come out of this:
- I’ve seen the very best in the people. So many of you have reached out and done things for us that I can never repay. The meal train is so very long, and my family will be well-fed (many of you have asked how to get on this train, and you can email Carol for info).
- My doctor’s name is Sicklick — and I can’t think of a better name for a doctor.
- The giant L-shaped scar across my abdomen is going to make me look badass in a bikini.
- I’ve gotten the chance to spend more time with Sacha since he’s been around at home this week.
- People cheering me on really helps. I’m not really sure if I’m strong, but all you folks telling me I am will assist with the brainwashing.
- The bar is very low for what I wear. I was already well-entrenched into sweatpants, but would usually try to make an outfit out of it; now my only criterion is “soft clothes.”
- Someone came to talk to me about donating my tumor to research. He didn’t get to talk for more than 10 seconds when I said, “You can have my tumor!” I have someone to give my tumor too, and hopefully it will contribute to future sarcoma research.
- People tell me they’re already shopping for the Suck It, Sarcoma party.