Play it again, Sam

Back on the plane again after a full day at MD Anderson. I had back-to-back appointments, each of which took longer than anticipated (with instructions not to eat before the scan), so by the time we finished up, around 3 PM, people’s legs were starting to look like more and more like chicken drumsticks to me and I was gnawing on my arm. We had 15 minutes to scarf down some sandwiches before hopping into a car to the airport.

I was eagerly anticipating this appointment because I knew that my surgeon and The Godfather had had a few exchanges on my case, and The Godfather had presented my case at MD Anderson’s equivalent of a tumor board, a cross-disciplinary team of sarcoma doctors.

 

The report

After two cycles of the new drugs, gemcitabine and taxotere (gem/tax), we have once again stable disease. The tumor is about the same volume overall as it was last time, with some promising indicators: the perimeter of the tumor looks darker, which may indicate necrosis (decayed tissue), and there are a few darker rivulets throughout the mass. No evidence of spread to other areas of the scanned (chest to pelvic) area.

This is similar to what we saw after two cycles of the previous drugs: overall volume of the mass was the same, when you balanced out the tumor growth with areas of necrosis. After four cycles of the previous drugs, we saw no change, so switched over to gem/tax.

The path forward: two more cycles of gem/tax, and then another trip to MD Anderson for scan and assessment. Unless something drastic happens, like we get extreme shrinkage of the tumor (20% chance that that happens, and if so, we’ll probably do a few more rounds of chemo), we will most likely go to surgery 4-6 weeks after cycle 4 (so maybe late September). No one on the tumor board, nor my surgeon, was advocating for radiation pre-surgery. I was kind of hoping for no more chemo, because I’m kind of tired of it, but that timing works great for me – I can get the kids back into the swing of school before we do the Big Dig.

 

A/B Testing

I’ve been conducting a little experiment: after reading about a study in which regional hyperthermia (heat), enhanced the efficacy of chemotherapy drugs (the study is relatively new and the availability of this type of treatment seems limited, and isn’t available at MD Anderson), I decided to administer my own type of local hyperthermia (some of you may know about my past DIY healthcare initiatives, including home surgery, and won’t find this surprising in the least).

During cycles 1 and 2 of the first set of drugs, I used a heating pad in the area of my tumor, for at least 20 minutes a day. Result: necrosis on the scans. In cycles 3 and 4 of the first set of drugs, I didn’t do this; result: no further necrosis. During cycles 1 and 2 of gem/tax, I resumed the heating pad application; result: necrosis. It’s not a perfect experiment but I only have one mouse to work with, so based on the above, I intend to continue the heat applications for the next two cycles.

 

He who must not be named

A couple of weeks ago I was in the shower, which faces a mirror. I caught a glance of my eyebrow-less, eyelash-free visage, and was reminded of a celebrity that I couldn’t quite place…I looked like someone really familiar. It struck me as I was toweling off: Voldemort. I look like Voldemort.

Still, he is a celebrity.

Having no eyebrows, I have to sketch them on, so they’re a little different every day – and I alternate between looking angrier and more surprised depending on how they come out.

I’ve often thought that one’s appearance was an expression of one’s inner self. But what I never realized was how much your physical appearance influences how you perceive yourself and your environment. Often times now, I walk around bald – it’s warm outside, and it’s just more comfortable. If I’m motivated I put on earrings, just to signal that I’m female. And sometimes I’ll wear bright lipstick, as if to say, “at least I still have lips!”.

When I see a bald person now, I almost always assume it’s a woman.

Because I look like this, I often feel that I should have an (unlit – because cancer) cigarette handing out of the corner of my mouth, and maybe a box of cigarettes rolled up into the cuff of a white Hanes t-shirt. I sometimes think I should ride a motorcycle, and maybe a sleeve of tattoos on each arm (white blood cell count permitting).

One day, my bald self and I were waiting on a field to pick up one of the kids, wearing bright lipstick and earrings, when a car drove by slowly and the woman inside peered over at me. I looked away, fearing, I don’t know, maybe a confrontation of some kind because I looked so creepy? “Hey!” she shouted as I hoped she would go away.

“I just wanted to say,” she said. “That you have the most strikingly perfect head. You look beautiful!”

I was so relieved. And thankful. Because even though I knew deep down in my heart that I look like Voldemort, it was nice that someone took the time to make me feel like I was okay.

 

Training for the big one

In the meantime, while I go through chemo and in the time before surgery, I’m focused on getting really strong. When I feel well, I train hard; one day I took one of the kids to the beach where we did stair sprints, 4 steep flights each way. They kicked my butt, but that didn’t stop me from yelling, “keep up with the cancer patient!” to her the whole time.

I’m diligent about doing something active every day (though I cut myself some slack on infusion days), and alternate between cardio, strength training and yoga. I know of a woman who recently had a similar surgery, and at five weeks she was still hospitalized, and last I heard they were going to have to remove her stomach because it stopped working after the surgery. I don’t know the details of her case, or her backstory, but I like my stomach, and I’m going to try to do all I can to make sure that I come out of the surgery strong – even if missing a few organs.

I’m also keeping up with my mental training. One of my friends is the CEO of Wellbrain, which is a company that works with clinicians to implement mindfulness into their pain management practices. There are some interesting studies showing that even just 10 minutes of daily mindfulness practice 4-6 weeks before surgery can improve pain tolerance by 50%, reducing the need for narcotics. I’ve meditated daily for about two years now, and am keeping it up because I know I’ll need it, not only to get through my current chemo treatments, but especially the post-surgical period.

 

The bright side

  • I’ve noticed, based on movies, that there are more bald people in space and in the future than anywhere else. This bodes well for me.
  • My mom was able to get consults at Stanford and at MD Anderson (with the generous help of The Godfather), so we’re feeling a lot better about her care. She’s going to be treated at MD Anderson as well.
  • We had a scare with one of the kids – an apparent sports injury unveiled a tumor on her femur. After a nail-biting couple of weeks we were relieved to find out that it was benign – and she’s back in full force with her sport.
  • I had to go in person to renew my drivers license. Though I had high hopes of having a blue wig for my photo, technically they don’t allow wigs, so I went in with my most believable one – the Chloe Kim. Nobody questioned it, I passed the eye exam (which I was worried about given the way the chemo’s been affecting my vision), and I successfully renewed my license.
  • I love seeing everyone’s vacation pictures. Thanks for sharing all your amazing, happy experiences. I love seeing people happy and living life.
  • I continue to be reminded that I have won the friend lottery, with the most generous, tireless and entertaining friends. Thank you.

I saw a meme this week that reflects my thoughts exactly: Thank you cancer, for showing me what’s really important in life. You can go now.

 

 

23 thoughts on “Play it again, Sam”

  1. I have been thinking about you a lot lately, as recently as last night. I was SO thrilled to see this in my inbox this morning. You’re a wise, witty lady, my friend. Sending so much love, light, and strength your way! Thank you for sharing all that you do. You’re a gem!

    Liked by 1 person

  2. I laughed. I cried. This was better than “Cats.” (as usual)
    Thanks for sharing – You are a truly gifted writer. Don’t stop once you take care of this business.

    Liked by 1 person

  3. Hmmm… so when dozens of people are telling you that you have strikingly perfect head it doesn’t count unless this statement is corroborated by a total stranger. Well, I’m glad the lady was able to send the message across. And, yes, Sandi, you do have a strikingly perfect head and you do make me feel ashamed about 25 mins of half-assed run I endured today at the gym and considered myself a hero. I’ll go for 45 mins tomorrow. Very happy to hear that the Godfather referred your mom to a good doctor – finally, she’ll get quality competent care she deserves and needs! I think about you all the time and am so happy you’re in good spirits. From what I understand (based on your prior posts) – no progression of such an aggressive tumor maybe an indication of some chemo efficacy. And bright lipstick in my book is always an unmistakably reliable good sign!

    Liked by 1 person

  4. Inspirational. (You need to stop deflecting compliments though). Keeping my fingers crossed that this next couple of cycles go really well (because heating pad). Thank you for sharing, Sandi.

    Liked by 1 person

  5. Dear Sandi, thank you for this post. I am always looking forward to getting news from you. I am glad that news are encouraging and am keeping my fingers crossed for you and the whole Adam’s tribe in California. And many thanks for your words of sympathy after my Mothers passing: It is absolutely admirable that you have space to cheer up people who are in a difficult situation. Stay strong, and interesting and a good writer, all the things that you already are and which make you such an impressive and likeable person! Bisous ans warmest thoughts from Gdansk!
    Magda

    Liked by 1 person

  6. This really stuck with me yesterday and into today…I wasn’t sure what to say.

    Your writing is so generous and open and funny in the most unexpected ways, but the meme at the end kicked it all home, Sandi. You’re so right, it is time for the effing cancer to go. You’ve been a trouper, and you have an incredible attitude, etc. and you’ve proven you can handle anything you get thrown. Seems like you’ve been tested plenty and enough is enough. 🙂 This feels like Old Testament shit – like, come on, enough is enough!!!

    I hope you wake up one day soon (mid-September?) to a tumor-free reality.

    In the meantime, keep showing up the mid-40-year old ladies who don’t have cancer and who couldn’t do those stair climbs. 🙂 🙂 (ummmmmmm….i might need to up my exercise game).

    xoxoxoxoxox and a genuine, huge, not work hug, m

    >

    Liked by 1 person

  7. Sandi, if all literature was as inspirational and insightful as your blogs, I would be “well read” indeed. Of all the emails and articles and news reports I receive each day, your blog is the only one I devour immediately. Then I savor it throughout the day, reflecting on your insights. You make my appreciation of life richer. There are multiple winners in the “friend lottery” and you have made me a winner too. 🌹🌹🌹

    Liked by 1 person

  8. So glad the scan was good news, and that the timing of the surgery will work out with the girls back in school. Let me know if we can help in any way, please!! Oh, and also love that your new license will have the Chloe Kim wig b/c that one looked awesome on you 🙂 xo

    Liked by 1 person

  9. It was great to see you yesterday! You look FAB (I seriously have the round head and double eyelids envy!! 🙂 I find your sense of humor, courage, and grace to be absolutely amazing. Gosh, I’ve got to hit the gym. Love how you’re being the best version of you no matter what!

    Liked by 1 person

  10. Missed you & Adam last Sunday when you were in Houston! Love the photos, you look strong, beautiful and fit…..You encourage us all to continue to embrace life and live large in all senses. Thanks again for the humours and inspiring writings…I always pick up something new from it!…Continue to keep you in our prayers and thankful that your mom is under good care as well……much love from the Fellers

    Liked by 1 person

  11. Thanks for letting us share this journey with you, Sandi. Continuing to pray for you and your family and can’t wait to see you post a pic of your new driver’s license picture!

    Liked by 1 person

  12. i echo all of the sentiments expressed here by your friends – you are true grace and grit and have one beautiful head… and an even more beautiful brain! Just one question – can you tell us more about this DIY home surgery???

    Liked by 1 person

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