A friend told me that getting sarcoma is like getting struck by lightning — they don’t believe it’s genetic (though the Godfather thinks it probably is — but it’s genetic in such a complex way that it’s too hard to predict), or because of anything I did or ate — it’s just bad luck. Turns out the idea that lightning never strikes the same place twice is a myth: last week, we found out that my mom has lung cancer.
The good news is that it looks to be Stage 1. I shared this with a friend with Stage 4 cancer and she was overjoyed. That’s what’s so funny about this cancer thing — it’s all relative. When you have what we have, then Stage 1 is almost like having a cold. (Ok, not really — cancer is cancer, so we’re taking it seriously…but Stage 1 is really good, considering.)
So we’re navigating this other (luckily better-understood) cancer, and thankfully my brother is doing the heavy lifting on this one. Poor guy is supposed to be in three places at once in the coming weeks, but thank God for FaceTime.
On Sunday, Sacha and I flew to Houston for our MD Anderson appointment. I wore a surgical mask to ward off germs, and in hopes that it would scare people away from sitting next to me. That second part totally didn’t work.
The MD Anderson facility is like its own little town — with 20,000 employees. When we checked into the hotel, there was a patient representative from MD Anderson there with my appointment schedule printed out, a bio of my doctor, and tons of information on all the services available to patients. There’s a hair salon, free massage, libraries, research resource centers, gardens…I felt like I was at a resort that just happened to be full of people with cancer.
A college friend who works at MD Anderson met us for dinner. She gave us the after-hours tour of the facility. She asked where we wanted to go to dinner; we said we were up for anything so she suggested Rice Village. I was surprised there were enough Asians in Houston to warrant a “Rice Village” but agreed.
On our way over, she asked if I’d ever been to Houston. I didn’t think I had, but then recalled a time when, as a child, I was running across the (completely flat) lawn at Rice University, when I fell and my mouth landed on a hill full of fire ants (see “lightning never strikes the same place twice”). And that’s when it clicked…that kind of Rice Village!
We were in town during rodeo season, but were too tired to hit up the Rodeo. We did get to meet up with one of Sacha’s childhood friends from France who now lives in Houston — and she went to the rodeo! All I have to say that in my next career I would like to pursue mutton bustin’ (please, watch the video — you won’t be sorry).
The Godfather of sarcoma
On Monday I had an appointment with the Godfather. It was at 3 PM, but the sign at the Sarcoma Center said that he was running 1.5 to 2 hours late. I took that as a good sign — he’s spending as much time with his patients as it takes. So the staff said we could go exploring for a while and come back. We walked around and visited the art gallery, the aquarium, and these giant cowboy boots.
When I finally saw the Godfather, he explained the following:
- The MD Anderson pathology additionally confirmed retroperitoneal leiomyosarcoma (LMS).
- We should consider my case an LMS of the inferior vena cava.
- In my case, it doesn’t look like it has spread to other parts of the body yet (it’s “locally advanced”).
- The surgery is going to be a very difficult one. So our goal with chemotherapy is to shrink the tumor in order to simplify the surgery. He agreed that my surgeon is excellent.
- He recommended doxorubicin + dacarbazine, plus dexrazoxane to protect my heart. It’s not clear whether insurance will approve dexrazoxane, since it is technically approved only after two cycles, when I guess your heart is sufficiently damaged in the view of the insurance companies. He recommended against ifosfamide, saying that it was unnecessarily hard on the kidneys (I’m only going to be left with one!) and not as good for treating my tumor subtype.
- After two cycles, we’ll scan to see if it’s working, and then continue or switch up treatment accordingly.
- He has a second-line treatment in mind, since this is a cancer that often recurs, and feels it’s easier to take the harder treatment first and then step down from there.
- He thought the regimen, which is outpatient, could be locally implemented in San Diego assuming my medical oncologist (MO) was on board, with visits to Houston every 6 weeks. We’ll reassess every two chemo cycles.
He gave me a big long bear hug at the end of our session, and said that that was the real secret to why his patients did better.
This treatment still carries the cardiomyopathy and leukemia risk. One of the drugs is nicknamed “The Red Devil” by LMS patients…so pleasant!
I decided to move forward with his recommendation. Over 43 years, and with people coming from all over the world, he’s seen more of my LMS subtype than probably anyone else — and it would be able to be implemented in part remotely. I talked to my MO at UCSD and she was on board with the plan. So…just pending insurance (please, insurance company, have the desire to save my heart!).
The bright side
Sacha and I walked to a nice dinner on Monday night, at a restaurant which featured more vegetables on a menu than any other I’ve seen in Texas.
Logged another week in the books of seeing friends, getting cute comfy clothes, socks with animals donning eyewear, fuzzy socks, wig shopping with a friend (not sure how I’m feeling about wigs just yet) and Texas-specific snacks (Buc-ees Beaver Nuggets, anyone?).
And today, as recommended by so many resources, I cut my hair short to make my inevitable hair loss less depressing. Audrey calls me “Grandma Jr.”, and Amelia thought I was my mom or an elf when she saw me. Whatever, it’s a hairstyle I’ll have for 3 weeks!