God bless Texas

Lightning strikes

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.

Rice Village

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.

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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.

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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!

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22 thoughts on “God bless Texas”

  1. Glad to hear you are getting clarity on the next steps, and you have experienced advisors and doctors. You look beautiful, as always, and thank you for sharing your journey. It helps us pray for you too!

    My nephew and niece do mutton bustin’ in NorCal (like r-e-a-l northern CA, 13 hrs north off Hwy 5), where my brother-in-law works as a rodeo physician when it’s in town. This is the part of CA where people have wanted to secede from the state with southern Oregonians and create their own gun-toting, keep the government out of our business, state :). Let’s just say it was startling to go play “Airsoft” (a paint-ball-esque game) and see local militias “playing” while we hung back in our ski clothes and avoided eye contact.

    Hugs, Conyee

    Liked by 1 person

  2. Sandi, I’m sorry to hear about your mom’s test results. But it’s so good it got caught early enough, which is a great relief.

    It sounds like your TX trip went as good as it could, and it’s awesome you got a truly competent, experienced and caring doctor. That’s a big deal!

    PS And while I hate the circumstances, I like the hair do! Very few people can pull it off. But you’re a super human as we have established some time ago. Rock the do, kick C’s ass! Hugs

    Liked by 1 person

  3. Sandi, great seeing you and Sacha at Mandatory 1 (volleyball) in Anaheim on the 10th and having a great chat before the day. Sacha had told me about your mom, and lightning is in a bottle so to speak with respect to that.

    Perfect hair-style by the way, and when I see Amelia this Sunday, I’ll confront her on the “elf” comment.

    Liked by 1 person

  4. You are such a natural beauty, and hair long, short, or no hair doesn’t change that! And given that you are such a style fashionista, I wouldn’t be surprised if your new cut becomes the rage! I lived and worked in the Houston Med center for 2 years with so many wonderful people, and I actually loved it. Chinatown has the best noodles and bubble tea:) Houston is an ethnic food mecca! I’m so glad you got this excellent 2nd opinion and care. You deserve only the best. I’m so sorry to hear about your mom but giving praise for the stage 1 diagnosis. Adding her to my prayer list! Love to you all! 💕💕💕

    Liked by 1 person

  5. Welp, you can’t escape parent-teacher conferences with Ms. Money. Yesterday I gave Alyson an excellent report on Sandi. She agreed, wholeheartedly, that our friend is exceeding in every line item on the report card of life! We also made predictions that you would be the cutest darn Pixie Princess! And again, my father is never wrong. He’s been texting me that he just knew that MD was going to prove to give you the answers you need. And that you’re going to kick cancer. And that you need to take the limo next time. And to that I say, “Yes Sir!” Prayers are added for Mommy. Love you dear friend. Meg

    PS..Bill and I were a little surprised that you didn’t ask us to stay over with the girls when you went to Houston. Wink. We are pretty positive we would be the raddest chaperones ever. Plus, A and A really couldn’t be any safer with the FBI in the house. Please consider us at the top of the list on your next trip to Houston. Promised fun and safety! xo

    Liked by 1 person

  6. I love the haircut and mutton busting is the BEST! You’ll have to come to the Poway rodeo this fall since you didn’t make it in Houston. Praying for you and your family. Lots of love and hugs!

    Liked by 1 person

  7. Hey Sandi I’m so glad to hear the update. I think about all the people that aren’t as smart as you that couldn’t figure out how to find the best doctors and the best care that you seem to have found. Leave it to you to find a way to vacation in Texas under the guise of medical care 😊! It sounds like your care plan has fallen into place. Loren and I keep you in our thoughts and prayers. My best to your Mom.
    Marjie

    Liked by 1 person

  8. Sorry to hear about your Mom, I have already put her on a pray list and also shared your update with the Sisters. And I love the new hair cut, your so cute anything would look great on you. Take care. Love Jane

    Liked by 1 person

  9. Sandi thanks for the update. Sounds like you got some clarification in Texas and The Godfather sounds wonderful giving the bear hugs. As Meg said if you need some of the girls to come with for support I am in.! Your hair looks beautiful as always Continued prayers xo

    Liked by 1 person

  10. Gabs and I are rooting for your (and now your mom’s) full recovery. Your positivity is infectious and a lesson for us all! Looking forward to seeing you again and visiting your side of the world!

    And your new hairstyle really suits you!

    Liked by 1 person

  11. Your new hairdo looks very cute! But I was so sorry to read about your mom. I’m relieved that it was an early diagnosis. Just think of that happy time for you and the family when all of this is all behind you. I’ll let you borrow a comment that I made many years ago (in a very different, non-medical situation): “I’m looking forward to remembering this!” On the other hand, I think it’s more likely that you’re looking forward to forgetting it. May that time arrive as soon as possible!

    Liked by 1 person

  12. I continue to pray for you and your mom! I love the mutton bustin’ – these kids are so cute.

    I’m convinced that the MDA doctors’ secret power for treatment success are their big, long bear hugs! I got one from my radiation doctor too at the end of my (crying) session and the next morning before my CT scan procedure. They are so caring!

    As for doxorubicin, my breast cancer friend and I had that as part of our chemotherapy. Glad to report from her cardiologist, no heart damage. And, my heart is doing ok too. ❤ The "Red Devil" looks like Kool-Aid they are hand-injecting into your body. I made sure they took the ENTIRE 15 minutes – too fast is problematic – to inject slowly by chit-chatting with them! Tap into your gift of gab at that time! 🙂

    Liked by 1 person

  13. Yes, Texas does have lots of vegetables; those farmers are actually growing more than just cows and hogs. And glad that you enjoyed a bit of Rice Village and other things that Houston has to offer. That part of town is underrated from a cultural perspective. Finally, my step-sister was on The Red Devil for a while due to advanced breast cancer and I can put you in touch, in case you’re interested.

    Liked by 1 person

  14. Dearest Sandi, thank you so much for sharing the updates. You are so beautiful. The way Sacha and you are taking/handling these challenging circumstances with a strong faith and gratitude seems a miracle itself to me. So inspiring and encouraging. Another sign that God is with you and one of many miracles you will experience on the way. You have my prayers and love.

    Liked by 1 person

  15. You look fabulous! From one short haired girl to another, you are rocking the new ‘do, sister. So glad that you have a game plan. Time to go on offense…and kick some ass. Thinking of you and your family and sending love and prayers, Sandi.

    Liked by 1 person

  16. Praying for you & your mom … and your family as they support you both! And honestly, your new ‘do looks great! I could NEVER pull it off! =)

    Liked by 1 person

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