Houston chronicles

The room

There’s something missing from medical centers. Let’s call it a Processing Room. It’s a room you can go to after any consult, diagnosis, result or procedure. In this room would be several sections: first, an area where you can privately shout expletives and shake your fist at the sky. Another might have dolls dressed up as medical personnel or insurance claim reviewers that you can punch. Yet another would have an assortment of snacks that you can binge eat by candlelight while listening to sad music.

I could use a room like that.

I haven’t written much about my mother lately, but let’s just say that her care to date has been disappointing at best, and strange at times, and if rooms number one and two above were available, I would have made ample use of them. They didn’t get all the cancer in the surgery. They didn’t tell us for several weeks. There are other oddities and concerning things that I won’t document here, but suffice it to say that I am frustrated at not having the capacity to be more involved. Not helpful at a time when I’m supposed to be keeping my cortisol levels in check.

Luckily, my brother is taking some time off work to help drive some of this forward, because we need more opinions. She’ll have a consult at Stanford this week, and potential consults at UCSF and MD Anderson. Coordinating the care and finding the right team is a full-time job. Caregivers should be allowed to use the Processing Room too.

As I write, I’m on a flight back from Houston after my scan and consult, binge eating $4.99 bags of popcorn that I bought at the airport. Today I learned that after four cycles, the tumor did not shrink. The good news is that it didn’t grow, but from the standpoint of the goal of the treatment – to shrink the tumor which would also demonstrate that it was likely effective in killing any small areas of spread (called micro metastases) – it was a failure.

I knew that there was no guarantee that it would work, but – I don’t know – I felt like I worked so hard at it. It’s like I studied for 12 weeks for an exam, only to find out that I got a D. So I’m not gonna lie, I’m disappointed. I don’t blame the Godfather though – I’m lucky to have a doctor who actually cares, and we went in with our best, most aggressive shot – I just really wanted it to work.

The pivot

So what’s next? We’re going to try a new regimen. This one’s a combination of gemcitabine and docetaxel. I get it on Day 1 and Day 8, and there are various pills involved too, and apparently on the second week I will feel like I have been smacked upside the head. So we’ll try 6 weeks of this, and then have another scan.

I have just learned to manage one set of side effects and am getting my head around stepping into a whole other set of unknowns. But, I’m grateful that there are other options.

Here’s the hope: this shrinks the tumor. If it doesn’t, maybe we go to surgery. Maybe we try some radiation, though that has its own complications and could make some parts of the surgery harder. The Godfather is going to meet with his team of surgeons and radiation oncologists and coordinate with my surgeon here on next steps.

On Sunday, after my blood work, Sacha and I went to dinner and then walked back to the hotel through Rice University. As we were cutting through some fields, I saw a lone flower – a sunflower – which as you might recall, is the sarcoma flower (why they have a yellow flower but purple ribbon is another marketing matter altogether, one which I feel I need to address with them professionally at some point, but not now). I ran over and snapped a photo of it, taking it as a good omen.

But as I got closer to it, I wasn’t sure anymore if it was a sunflower. Was it some sort of sunflower-ish daisy? Black-eyed Susan?  I spent a good amount of time looking at pictures of sunflowers and daisies and the results were inconclusive.

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Apparently sunflowers and daisies are part of the same flower family.

I wondered about this garbled message from the universe. I feel like there is a message, it’s just really muffled and I can’t quite make it out, but I’m still trying to listen. Maybe it’s just saying, keep looking.

The bright side

My driver’s license needs to be renewed soon, and I still won’t have hair. So I can decide what color I’m going to have – I think it’ll probably be blue or pink — or possibly an Hermes scarf I got from a lovely and generous friend. I hate all my driver’s license pictures but I know I’m going to love this one.

I did have a missed opportunity though – I didn’t wear the Ben Franklin to the airport because it was so hot in Houston, so when I was asked to take off my hat there was no freaking out of TSA agents. I’ll have to try again with Ben when it’s cooler out. It is so hot in Houston. I’m not sure it’s really a habitable land.

Some of you have asked if I’ve made any “cancer friends”. The answer is yes! I’m grateful for my cancer friends, even though I had to have cancer to meet them. It’s a funny thing, when you meet other cancer people it’s like your friendships are suddenly fast-tracked and you text each other all the time. It’s nice to know people who understand exactly what it’s like to wish for a Processing Room, for instance.

I have been engaging in some retail therapy. I’m pretty sure studies have shown that you live longer if you buy more clothes, if only out of sheer will for optimizing the cost per wear of each item.

25 thoughts on “Houston chronicles”

  1. I am a big fan of retail therapy. Can we online shop together this week? MacBook next to MacBook, maybe even Apple TV projected…. Could be quite exciting!!!

    Liked by 1 person

  2. My devotional today in “50 Days of Hope” speaks to what you just talked about. Day 39, read it. ❤

    Processing rooms sounds great – that what I do at home. I like retail therapy too. Didn't get to do much this past year so doing it now. Hey, Ray had painting and house projects therapy, I can have retail therapy.

    So thankful we have each other in this "club no one wants to be in". Will keep praying for Mama Hwang and for your new treatment regimen! xoxo

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  3. I love your spirit friend. I know this journey sucks, but we gladly slog through it with you! Can you still go walking?

    Ps. Thank heaven we don’t live in Houston!

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  4. Sometimes I wish I had all the answers to your questions….this time I do!…I know why the sarcoma trust have a yellow flower and a purple ribbon. They are complimentary colors. They are the exact opposite colors on a color wheel. (colOUR) They go perfectly together. X

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  5. It sucks that your mom has to go through not very good doctors. It’s bad enough to have such a serious condition, she should be focusing on getting better, not on looking for a better doc. Thank G-d your brother can help – I’m sure you’ll find the best path forward!
    It sucks the old protocol wasn’t much help, but the new one should!
    Retail therapy never fails though! It’s a very true and tried treatment that helps absolutely everybody . I think insurance should be covering it. It should be like physical therapy – you get a script, you pay your co-pay & the rest should be covered.

    Liked by 1 person

  6. Thank you (again) for sharing, Sandi. I wish I had access to a Processing Room myself sometimes.

    Your Mom’s situation really sucks, but you need to trust that your brother has the ability to kick ass and make things right. Hoping that your next regimen solves the puzzle (but keeping an aggressive tumor from growing must be at least kind of a good thing, right?).

    Liked by 1 person

  7. Sandi, I am so terribly sorry for the disappointment with your mother’s treatment, with your scan results, and with all of the crap that warrants a Proceasing Room. As a professional fundraiser for medical centers, I think a processing room is the perfect concept to pitch to major gift prospects, especially those who have been through hard cancer stuff! When I do, I’ll call you in for your awesome sense of style when we start decorating it!! I will be praying for this new regimen for you, for great progress for your mom, for strength, endurance, peace, good snacks, and great clothes! God has been reminding me lately that trusting him means accepting that what seems best for me may not really be what is best. It means that disappointment may be a hidden blessing, one that we may not ever even understand in this lifetime. But it also means that the God of the universe, the God who loves you more than you can fathom, is holding you as you walk through HIS perfect plan- hard though it may be. Praying you feel his arms tangibly in this incredibly tough time. Much love. ❤️❤️❤️ H

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  8. A processing room is, indeed, a genius idea. I just wish it weren’t so dang needed. I really did go home and punch some pillows yesterday on your behalf and it felt marvelous. Sending you some giant hugs that I intend on delivering in person…lots of love coming your way.

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  9. A blessing in disguise, I do believe. Plan B has always been a winner for me and am positive it will prove to be for you too. Bill makes my Antho returns every Sunday. He is happy to swing by and take yours too. The gals at Anthro now swoon over him when he enters. He will drop off Baked Bear and pick up your weekly discards, all so you can start over on Monday. We love you so much! Meg and Bill and Daddy and Momma Money, too

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  10. Love the part about the Sunflower-daisy-black-eyed -Susan. Maybe the message is just keep on keepin’ on. May my wishes for you come true, Sandi. You are always in my thoughts

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  11. ah…..at moments like this, I try to count my blessings….It is hard and and I am disappointed to hear the news as well…….don’t lose heart….He is able! and you are strong. So continue to pray for the next step…Will keep your mom in our prayer too…yes, medical care could be pretty messed up here. I experienced it first hand. Perseverance is key…..and I like to echo your friend….purple & yellow work together…I think we used to design a website using those 2 colors! yes…Houston is crazily hot….hope you didn’t get any mosquito bites!

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  12. Dearest Sandi,
    I admire your strength and appreciate your kindness to write and share your thoughtful reflections on probably one of the most difficult days. You are very special to me (and those who know you) but way more special to our Father. Sending you lots of love and prayers ❤️

    Liked by 1 person

  13. Keep looking, friend 🙂 You are an amazing person and thank you for sharing your journey. I am sending you positive vibes, prayers, and hugs. I am also willing to purchase / wear a Ben Franklin wig…just because.

    Liked by 1 person

  14. Sandi, you will get through this!! I feel like the fact that the tumor did not grow is huge. Your body and the chemicals did all they could to stop the process of growth of an aggressive tumor which is an amazing thing. I’m sorry for the treatment that your mom is getting. It sounds crappy and having to deal with that on top of everything else requires as many processing rooms as you can get as well as large amounts of retail therapy. I hope that she will be on the way to healing and recovery soon. I also hope the Corgis are helping and sending you positive vibes and lots of comfy squishiness. Have you named them yet? 🙂 If I could get you a real Corgi I would. You’ve got this girl, I know it. And you’re a f*cking rockstar. Much Love, Ali ❤

    Liked by 1 person

  15. I’m sorry this treatment didn’t work, but I’m hopeful for plan B. Thank you for sharing your journey with raw honesty, humor and hope. I always look for signs and I think that was a good one! You are in my prayers.

    Liked by 1 person

  16. I’d been putting off reading this until I could devote some time to it, and because I always worry there will be bad news.

    I love your ability to see the silver lining in each of these opportunities.

    Liked by 1 person

  17. I am thinking about you Sandi — everyday — and reading about your journey. I miss you. I realize you may not be able to have visitors, but if there is a chance to see you, even for 5 min…I’ll take it.

    Liked by 1 person

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