Net neutrality

Would you rather

In high school, I went to a magnet school. This involved taking a bus from my neighborhood to the local high school, and then waiting for another bus to take me to my actual school, which was another 45 minutes away. This was before smart phones and tablets and just shortly after the printing press (or at least the Walkman) was invented, so my classmates and I had to use our actual brains and mouths to provide entertainment. One of these ways was to play “would you rather”.

Would you rather eat a bunch of hair pulled out of a bathtub drain, or would you rather burp every time you spoke? That’s what cancer treatment is like: trading off one not-so-great thing for another.

I’ve noticed that I’ve become oddly possessive of things I once took for granted. My fingernails are turning purple, and sometimes they hurt. I know that other patients on the patient discussion boards I’m on have lost their nails, and I’ve realized that I’m rather partial to having fingernails. I find myself playing “would you rather” on my own nowadays: would I rather have fingernails, or let a tumor eat my insides? Turns out it’s a lot less fun of a game when they’re real choices.

Scanxiety

I didn’t post last week because it would have been about my scanxiety – which what on the patient boards is used to describe the anxiety one feels while waiting for scans and results – and there was no point in spreading it unnecessarily. Some of the people on the boards have PTSD from the scanxiety: since leiomyosarcomas have a high rate of recurrence, some of them – the luckier ones, in a sense – have weathered 16 years of scans, 7-8 surgeries, radiation, worked through all the sarcoma chemo regimens, and they’re still going. But understandably, they’re traumatized by the prospect of a scan and which body parts they’ll be losing next.

Yesterday I had my first scan since I started chemo, to see whether it was working. This trip was tightly booked, since we flew in the night before, and I had back-to-back appointments all day with blood work, the scan, a consult, and then an appointment to get my port approved for use at MD Anderson since they hadn’t installed it (important since some of my veins are kind of giving up, and my arms are both sore and bruised from unsuccessful vein entries).

The Godfather came in and started off with one of his signature healing hugs. He thinks white lab coats are boring, so he covers his in buttons and pins (or if he worked at Bennigan’s, “flair”), so when he gives you a hug, he stabs you with all those pins, which I view as a sort of acupuncture.

Is the chemo working? We can’t say for sure. On the one hand, there is a hole in the middle of the tumor, where some necrosis (tissue death) has occurred. On the other hand, the tumor has increased in overall size. However, it does seem that the hole is growing faster than the tumor is growing overall – so that is a positive sign. Since there aren’t that many options for LMS treatment – four, really – the Godfather said that he wouldn’t want to rule (the most aggressive) one out without proving out definitively that it didn’t work. So, we’ll proceed with two more rounds of it, do another scan, and then assess.

I had a bunch of questions about the path forward (what if this, what if that), and the general response is that we need to evaluate as we go. It could involve other treatments; it could involve radiation, and it will hopefully involve surgery, which is the best way to try to eradicate the cancer.

So overall, I guess it’s neutral-to-goodish news. It might be working. Back at it tomorrow with another infusion.

What if

Even worse than the scanxiety is the trap of falling into the what-if game. No good comes of me thinking too far ahead.

I stay on the patient boards because there’s good information shared on them – and because of the rarity of the cancer and commingling of disease types in research, none of the studies are really conclusive in helping me make treatment decisions. So I like to collect anecdotal evidence to draw my own conclusions. There have been a few patient-led efforts to try to create a database of treatments and outcomes, but they’ve been hindered thus far by privacy concerns (and the multivariate analysis that would need to be done would be pretty daunting given all the universe of beginning, middle and end states).

Sometimes there’s encouragement on these boards too. But too often, members die. Sometimes, the spouses post about the deaths. These posts are raw and painful, and the ones with pictures and families crush me. This one undid me for days. When it’s someone around my age, with kids, with a life that somewhat resembles mine, it’s so hard, because — what if?

I’m devoting just as much energy to the mental game as the physical. Mindfulness, meditation, prayer…exercise, sleeping, eating…those remain my primary spheres of energy investment. I’m still an optimist, but it does take work.

The bright side

Bonding

Last weekend, Sacha took one of the kids to Vegas for a volleyball tournament, and the other girl and I had been getting on each others’ nerves – which was not how I wanted our relationship to go down. So I told her I was going to force her to bond with me that weekend. We rented a movie, made pizzas, and Saturday night, when no one was at the mall and it was safe for my low-immune-self to be out, we went shopping.

Since it was a cooler evening, and a special occasion (mall! public!) I put on my Chloe Kim wig. We had only been at the mall for a few minutes when a woman ran up to me and said that she loved my hair color and begged me for the name of my colorist. I had to laugh and confess that it was a wig, but…kudos to the colorist at Rene of Paris wigs!

Sunday was kind of a bummer since we had planned to do some more hanging out (forced bonding works!), but the oncologist on call asked me to go into the ER for an infection (everything is ok and I have a follow up appointment today where I hope they’re going to tell me the same). Luckily when you’re a cancer patient they get you into a private room pretty quickly, so I was able to be out of there within three hours and we still had a little time to spend together – enough to make a nice dinner.

Security

A huge blessing was being able to go on this trip without having to worry about how the kids were doing. We weren’t at all worried about welfare since they were being cared for by our dear friend and her boyfriend, who happens to be an FBI agent. I’m confident there’s a major market expansion opportunity for the FBI in the arena of childcare. The girls told us they were “having a great time with their foster parents” and that we were free to “take another vacation day” if wanted to. (Note: seek out vacations that don’t involve blood or needles.)

Home at last

After 21 days in the hospital, my mom is finally home and recovering nicely. Two aunts and an uncle are on hand to help out, and I was able to see her on her birthday! Just the other day she got the ok to finally take a real shower, about which she was overjoyed.

And finally

I’ve discovered that if you’re ever feeling down, there’s nothing that The Fitness Marshall can’t fix. Just please don’t imagine a bald, middle-aged woman in pajamas trying to keep up.

17 thoughts on “Net neutrality”

  1. Prayers for good medical results. I often remember the times during the two hour bus ride to school. I remember us as the nerdy kids in the “regular” school lobby.

    Liked by 1 person

  2. I’m so happy that your mom is finally home, but she remains on my prayer list thru the Carmelites. You never seem to amaze me your strength is so strong and I know that at the end of this treatment that your going thru you will be cured of this evil cancer. Sandy I think of you often and wish all the best for you and of course Sasha and the girls. Love Jane

    Liked by 1 person

  3. Well, it’s safe to say that pretend parenting was the best gig of the weekend. Thank you for trusting us, I mean Bill, with your darlings. For any doubters, I’m happy to report that the FBI can be trusted. Ha! One of my favorite parts of the weekend was admiring the family photos adorning the walls of your house; each one telling a special story. The laughter, hugs, and silliness spilling out of the family pictures filled the spaces of your home with loving and positive energy. Sending you strength as you start round two. Hope is Dope, Sandi! We all believe. Love, Meg

    Liked by 1 person

  4. Very happy for mama being home and even taking a shower. Hopefully she recovers nicely and quickly! Best of luck with your next rounds of chemo. The fitness marshall situation seems a bit intense, if you ask me, but, of course, you can do it, – you somehow manage to make me feel bad (in a good way) and motivate to move around. I’m keeping you and your mom in my thoughts and prayers.

    Liked by 1 person

  5. Thanks for sharing your thoughts and fears. It IS hard but you are facing it with such grace and courage…and humor! Fitness Marshall is hilarious…don’t think I can do those moves right now so you’re a step ahead of me! I’m so glad I got to see you at MDA! Love to you! xoxo

    Liked by 1 person

  6. Thank you Sandi. You continue to be a giver. Each time I read your post, I learn something new. Love the Fitness Marshall, might even try although really not sure I can manipulate my body in those ways… very thankful for your mom…You remain in our prayers..pray for total annihilation of the tumor!!! Love to hear your wig story! finding beauty in all things 🙂

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  7. Merci pour ces nouvelles si bien rédigées Votre courage fait mon admiration Nous nous joignons à vos prières et vous embrassons tous les quatre très affectueusement. Christine

    Envoyé de mon iPhone

    >

    Liked by 1 person

  8. Wow! It looks like I will follow that nice message “envoyé en francais.” I can’t trust myself to write in (what remains of my) French or in my smattering of Czech. Anyway, I always mix up the Czech words for “train station” and for a toast “to your health.” Of course, Czech friends enjoy laughing at me and lifting wine glasses “to train stations.” Thank you for your messages. You’re always in my thoughts, and I lift my glass to you and to your mom for the return to excellent health.

    Liked by 1 person

  9. Dear Sandi, thanks so much for sharing the updates, your thoughts and reflections. You are in my constant prayers. Lots of love,

    Liked by 1 person

  10. Burp every time I speak. Hands down. Because bathtub-drain hair is naaasty. Losing nails was my neurosis with chemo as well. Baldness, heart damage, neuropathy, plummeting WBC…fine. But nails popping off, that would be the deal-breaker. All my finger and toenails turned black and sensitive after my very first treatment, but not a single one fell off. Now, 10 months later, all traces of black are gone. Sometimes, God’s merciful grace is shown in the little things. You, and your nails, are in my prayers.

    Liked by 1 person

  11. Your words are honest, raw, powerful words. Just being able to share life lessons when you are dealing with so much shows incredible inner strength. Keep those words coming. (PS I learnt the Gratitude Feast this week – gonna share when I see you next) xxxxxx

    Liked by 1 person

  12. Such a beautiful post as always Sandi. I have no doubt, the way you are handling things with your mindfulness, optimism and grace, that this cancer won’t stand a chance. It seems to me that the fact the hole inside the tumor is growing faster than the tumor itself speaks to your body’s ability to get rid of things negative. Just as your positivity and bright light are stronger than any of the negative going forward. You are wonderful, thank you so much for sharing. I’m thinking of you and sending lots of love!! 3 ❤

    I’m so happy to hear that your mom is out of the hospital too. Yay!! And I love the Fitness Marshall!! Amazing. Hahaha. I’m going to have to show that to Rowan. ☺

    Liked by 1 person

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