I started this post earlier today when I had less information, when I was Googling things like “DIY radiology” and wishing I could binge-watch this cancer to skip ahead, but we have a leader now in the question of cat versus lizard.
Yesterday, my tissue samples had still not been sent from Scripps over to UCSD. After calling repeatedly, eliciting the help of some Scripps doctor friends (thank you!) and faxing (yes, still a thing) requests in 48 point font with “STAT” written all over and stars all around it to multiple numbers, I finally got an exasperated phone confirmation that they were being sent over. They arrived this morning so that a second pathology can be done at UCSD to validate diagnosis. This will take another 5 business days or so — so I’m not sure whether we’ll have this second opinion done in time for my next appointment on the 28th.
What we know
The latest CT scan shows no evidence of spread to the lungs — that is good. While CTs don’t catch anything under 1 cm, this bodes well that the sarcoma is localized.
The tumor has grown 6-8mm wider and 3mm larger front-to-back since the last scan, two weeks ago.
The MDM2 results from the original pathology from Scripps came back negative: this argues against dedifferentiated liposarcoma and is more likely leiomyosarcoma. Leiomyosarcoma is the one where I likely start with chemo to get the tumor growth under control, and then lose a bunch of organs in surgery (adrenal gland, kidney, part of the liver and get my inferior vena cava reconstructed).
That surgery sounds kind of painful. Every time I saw someone get stabbed in the abdomen in Black Panther, I wanted to shout, “How much does it hurt?? How muuuuuch??”
On treatment centers
I impulse-buy homes, but with everything else I’m pretty careful. Once I was referred to UCSD, I wanted to triple-check that this was the right place to be. A bunch of sites and sarcoma boards I visited stressed the importance of going to a center that was recognized by a major organization, like Sarcoma Alliance or National Cancer Institute, and UCSD, though they say they’re a high volume facility, wasn’t one of them.
What was important for me to know was the key driver of this push for certain facilities — and from what I could gather it’s:
- Expertise of surgeon, particularly in sarcoma which behaves differently from other cancers, and for which getting the surgery right is critical.
- Multidiscliplinary team including surgery, medical oncology, pathology, radiology.
UCSD ticks the boxes on both. There are great sarcoma centers at MD Anderson in Houston and Memorial Sloan Kettering in New York, but for various reasons, I would prefer to be treated closer to home. I reconnected over the weekend with a friend who I recently discovered is a surgical oncologist specializing in sarcoma, and who trained at MD Anderson. She said she saw patients who got treated away from their families, and it tore them apart. That would definitely be me.
After a process I’ll call The Great Vetting, involving a network of old friends and friends of friends in the sarcoma world, I feel good about UCSD and in particular about my surgeon.
The bright side
A friend sent me an article recently about uncertainty. My favorite quote is this one:
“When things are overwhelmingly hard and scary, and the prognosis is generally not good, sometimes hope lies in the unknown. Uncertainty is hope.”
I was texting with another friend who had cancer. We both now have a lifelong slow dance with uncertainty…but maybe it’s always been that way. We only notice because of the cancer.
In one of my 2 AM Google excursions, I found some data on outcomes of retroperitoneal sarcomas. The data sets were so small that the results were listed by physician name. Because of that, I conclude that those outcomes don’t apply to me.
The bar for “fun” now is pretty low. “Not cancer” = “fun”. Explore tax implications of various financial transactions? Yes, please! Scrubbing toilets? What could be more satisfying! Emptying the dishwasher? I have full mastery of that!
Other things worth appreciating:
- Reunions with old friends from all over the country, and how lucky I am to have friendships that have spanned multiple decades.
- New pans: got rid of the old non-stick pans and switched to the non-toxic ceramic-and-titanium Scanpans — which are awesome.
- My mom fighting my cancer by cooking up magical Chinese broths, and my dad driving her over to me.
- My amazing husband who tirelessly supports me and figured out how to make rolled oats not taste like paste; my kids who have stepped up their household game to help out.
- The irony that I’m now on a vegan diet. I realize this is due to a lifetime of mocking vegans.
- I believe that I can now play a doctor on TV.
- Enjoying hair while I have it.
- Each of you, who have somehow found your unique roles in helping to cheer me on and support my family, through prayer, food, laughter, books, advice, exercise, balloons, entertaining my kids, driving, commiserating, sharing your own experiences, crying, coordinating, face masks, pictures, leveraging your networks, using your professional skills and hugs.
I never knew that my village was so big.