Surgical oncology part 1

The waiting

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).

Next steps

  • 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.

 

14 thoughts on “Surgical oncology part 1”

  1. Made me cry, so sudden and shocking. And a wry smile at your humour as well. Keep it up. We are absolutely here all the way with you and praying every day.

    Liked by 1 person

  2. Writing has always been cathartic for me. Hopefully it is for you as well. I had another friend who got a “you may have breast cancer” voicemail from her doctor last weekend after a mammogram, (Who tells someone something like this over voicemail???) and I can’t help but wonder WTF is going on? Are we just getting old and frail? Has it been dumb luck up to this point?

    In any event, I’m not a good nurturer nor soother as you well know and I don’t pray, but I am thinking about you and if there comes a time and point where there’s something I can do (which sounds dumb as I type this, but is a sincere offer) please don’t hesitate to ask, even if you just want to hear my stupid Mr Miyagi impression again – it’s rusty so I’m going to start brushing up on it again.

    Heal well and heal fast. That’s an order, because the world needs you around for a good long time.

    Liked by 1 person

  3. I will have to get back to you re the cat vs lizard question….that’s a good one. Sending you all my prayers and positive energy. Sign me up for the MI chapter of SIS (suck it, sarcoma).

    Liked by 1 person

  4. Hey boss – out in LJ for about three weeks on next trip starting Monday. Will text and see what works for you and S. Happy to help out in any way except cooking. I like you and seems like you have a great fam so I don’t want to introduce a second health scare. See you soon!

    Liked by 1 person

  5. Praying, praying, praying. Right now- for quick and clear answers to what exactly it is, how best to treat it, and smooth, fast, and complete obliteration of the cat or the lizard! Sending love! 💕

    Liked by 1 person

  6. Oh, Sandi, we continually pray for you and your family!! I’ve come to discover that cancer is as much a mental fight as it is physical. Keep up the “Bright Side” section. I started a gratitude journal at the beginning of my journey for big and small things, now up to # 700- “I had a good nap today!”, “xx family brought us a meal”, “finished chemo!!”, etc. God is with you EVERY SINGLE STEP of the way! We love you guys!!! xoxo

    Liked by 1 person

    1. Like one of your other respondents, I am not in the habit of praying. But this news may provide me with an incentive to start! But in addition, I will enlist all my standard substitutes, like sending positive vibes and keeping you in my thoughts. You’re such a positive person, and I know that you’ll need to use that skill during this journey. I wish I lived closer and could provide additional on-site support. But my heartfelt wishes will fly across the country each day!

      Liked by 1 person

  7. Sending positive thoughts and prayers to you and yours from Chicago. All the support to you on this journey, please let us know if there’s anything we can do to help.

    Liked by 1 person

  8. I wish so much I were there to give you a huge hug and drink iced tea by the pool with you like in our Belmont days. And I promise not to make you look for robbers or put out kitchen fires … until you get better at least. You are one of the really, truly special few. I know everyone is special in some way but I’m talking about you and the other ~10 or so in the world among 7 billion of us schmucks who are the honest-to-goodness handful of perfect beings on this planet. The ones with the golden hearts, brilliant minds, self-sacrificing spirits, gentle souls filled with kindness, room-filling personalities, abilities to tell the best stories, and the self-deprecating senses of humor that make me laugh until I cry. I must believe that nothing bad can happen to you because what would that mean for the 7 billion of us who rely on the “specials” like you to make the world better, brighter, happier, kinder, funnier, and a place worth living in? I need you, love you, miss you and would do anything to make this all go away.

    Liked by 1 person

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