Chemo chameleon

What is the opposite of insurance?

Last week, after the visit to MD Anderson (MDA), I was feeling good about where we were headed. On Tuesday, talked to my medical oncologist (MO) at UCSD and she was on board with implementing the protocol locally. I was told that usually it takes 2-3 days to get approval, so I figured I’d probably start treatment early this week. Friday we met again to go over the details of the plan.

I hadn’t heard anything by Friday afternoon, so I followed up with her office (which had just moved, and some of the phone numbers weren’t working). Still pending. I called the insurance company, and they said they had faxed over a request for peer-to-peer review between my MO and the insurance company’s MO.

Because my MO said she had never prescribed this regimen, and I knew the importance of the peer-to-peer in establishing medical necessity and clinical evidence (tough for a rare cancer), I tried to get ahead of the game by working with the team at MDA to get her talking points in case it became down to a Texas-rodeo-style showdown. That didn’t quite work; MDA said they could probably get it pushed through more easily and sent their own request — which meant that if approved, I’d have to travel to Houston to get my infusions. Which would be ok, except that I wasn’t super excited about flying after chemo, or spending weeks or months in Houston (at least not on short notice).

Yesterday I woke up early and spent the first four hours of the day navigating the insurance situation. The insurance company had gotten a response from my MO on Friday, but then requested another peer-to-peer. They said they were sending the fax out and it could take up to 48 hours for the fax to go out (yes, I said fax. And 48 hours. Queue for the fax!). This is when I started digging up numbers and calling the numbers meant for medical providers, and projecting the authority of a person employed by a medical facility without actually lying using my high school drama club acting skills, made it through the system far enough to talk to a nurse who said their issue was that the regimen didn’t conform to NCCN standards.

I would just like point out to the insurance company that if I were looking for recreational drugs, I would not be seeking out ones that cause nausea, mouth sores or bone pain.

Instead of waiting 48 hours for the fax to come through, I let my MO’s office know the details. And…through the miracle of annoying but polite persistence, crisis communication tactics, and prayer, it was approved! So my first day of chemo is tomorrow!!!

I share all of the above in great detail to make the point (if you haven’t gotten it already) that your healthcare is no one’s number one priority but your own. Question things that you’re not sure are right. Ask yourself, what isn’t happening now that I can make happen? Advocate for yourself, think outside of the box, and strategize ways to get your case the attention it needs.

I wish I could say that we had a system where there’s a reliable quarterback coordinating your care. There isn’t. That quarterback has to be you. And if you’ve ever seen me throw, you’ll know how scary that is.

Going for the gold

I mentioned last week that I went wig shopping and left empty-handed. Honestly I don’t think I’ll be much of a wig person — a close friend has already sent me an enviable collection of cute hats (and eyebrow stencils!) — but another friend said that there would be occasions where I might want one — when I just didn’t want to have to deal with questions or people staring at me.

I thought it’d be fun to take the family wig shopping. The American Cancer Society provides free wigs, so we got one there first. There wasn’t much selection, so we got pretty much the only dark wig. It’s super long with cascading waves, and I’m pretty sure it’s a stripper wig. When we got home I had Audrey wear the wig and I gave it a haircut, to shoulder length, but it has these weird bangs that don’t line up with the fake hair part, and the wave made it all crazy, but I suppose it’s workable if I wear a hat.

The next place we went to was a little better, but the only wig I liked happened to be blonde. So…I got it. I figured if you’re going to be fake, be really fake. My niece loves Chloe Kim so I threw on a hat and voila! Now available for birthday parties and bar mitzvahs!

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The bright side

I picked up my prescriptions to take during chemo, and can say that I now have a very well stocked pharmacy. If you know me, you know that I avoid drugs and resort to Tylenol only if I’ve had a surgical procedure, but I like nausea and mouth sores less than I like drugs, so I will be taking these.

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My mom and I have the same haircut (um, and cancer)! It’s looking like they’ll be removing about 2/3 of one of her lungs, but Stage 1 is still relatively good news.

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I received a handmade card recently from my best friend in elementary school. We haven’t been in close contact in years, but as she wrote, being best friends during childhood gives us an eternal bond. The letter was so beautiful, reminding me of so many things I’d forgotten (like how for about 20 years I thought David Bowie’s Major Tom was “Tomato Tom”, adventures with our adversaries, and so on), and I read it over and over again.

When we were kids I was obsessed with penmanship (making me as cool as you would have imagined), and in particular I thought this friend’s dad had the most amazing handwriting. We might have tried to replicate it, to improve our penmanship. Or maybe there were some homework excuse forgeries thrown in, I’m not sure. But I was astounded to see that her penmanship now looked like her dad’s.

There was really no point to that last part except that I have cancer and I can write what I want.

All of your comments, notes, gifts, prayers and encouragement mean so much to me. There are so many of you that I wish I had spent more time with over the past month and a half, but managing a rare cancer (as a data-driven person) is surprisingly time-consuming. So even though there are many of you that I haven’t spent time with recently, please know that I’m so grateful to count you as friends, and especially during the quarantined sections of my chemotherapy I’ll revisit all your kind words to keep my spirits up. When I see the meal train coming four times a week through July, I am overwhelmed by your love and generosity. Thank you, thank you, thank you.

 

26 thoughts on “Chemo chameleon”

  1. All that incredible hard work, and you finally ‘won’ (won the right to start chemo)! I love that blond wig, btw. And, write a book please. You are a marvel and the world is a better place because you are in it.

    Liked by 1 person

  2. Sandi, you are so wonderful, brave and inspiring. You have such a big heart and humility while still remaining humorous, optimistic and determined. I admire you so much. Thank you for sharing your story. Best wishes to your mom! I’m so glad that she seems to be in good spirits. I think of you almost every day, wonder how you’re doing and wishing for the best outcome always. I’m so glad the insurance went through. Sending loads of love and well wishes with your treatment tomorrow. I’m sure you’re relieved to be getting started. I’ll be thinking of you sending you prayers and good vibes! You’re gonna do great!! ❤ I love the wig!! And that hat. I think you should seriously consider going blonde once your hair grows back. Long and blonde! 😉

    Liked by 1 person

  3. Chloe –
    You are gonna kick cancer’s ass . This disease has NO idea who it is messing with. And your message about being your own patient advocate is spot on. Imagine all the people who don’t know to do that — and a couple of weeks can make a difference, so fighting for what you need is so important. You are a massive inspiration to so many of us. xox!

    Liked by 1 person

  4. Love the blonde (even though I personally prefer brunettes). I also have no problem with strippers or stripper wigs, but that’s a different issue. OK, I guess this isn’t about me. Kick some chemo butt! Love from SF.

    Liked by 1 person

  5. We love you Sandi. We love your words. We love your humor. We love your strength. May God look upon you during this time and always giving you more humor and strength than ever before. Please know that it gives us all great gratitude as well that you let us help you and your family. We love your entire family.

    Liked by 1 person

  6. Sandi you are truly amazing! I really really admire you. Reading all this gives ME strength and energy – thanks! Love the new hairdo and the blonde look. And for the eyebrows… can I please get you these?! Then you can tell me how great or lame they are! https://www.headcovers.com/womens-human-hair-eyebrows-17/?gclid=EAIaIQobChMIhdSN68j72QIVBAaGCh36wAFSEAQYASABEgJbBPD_BwE
    Stay strong, Sandi! Praying hard for you, your mom, and your family 🙂

    Liked by 2 people

  7. Sandi I love your positivity your such an inspiration to us all. Your going to show this Cancer who’s the boss.Love and hugs to you for tomorrow M xo

    Liked by 1 person

  8. Sandi you are truly amazing! I really really admire you. Reading all this gives ME strength and energy – thanks! Love your new hairdo and blonde look. And for the eyebrows… Can I please get this for you?! https://www.headcovers.com/womens-human-hair-eyebrows-17/?gclid=EAIaIQobChMIjp7X3PH72QIVkVuGCh2VvAnEEAQYASABEgL10vD_BwE
    Then you can tell me how great or lame it is. Stay strong, Sandi! Praying for you, your mom, and your family 🙂

    Liked by 1 person

  9. Sandi I think you look beautiful with what ever you wear. If it was me I’d wear a stocking hat and be done with it, but that’s the GI in me haha. Give your mom my love and I pray that everything will go good for the both of you. Keep up the fighting spirit, and make sure that they do what you need to be done for you. Love Jane

    Liked by 1 person

  10. Sandi if anybody can rock the Chloe Kim look its you! I love it…Hoping first day of chemo goes well and know we are all thinking of you. Sending you lots of love and support every day.

    Liked by 1 person

  11. Please let me know when you need me to drop off my snowboard to complete that Chloe Kim look for your birthday batmitzvah gigs. Lol! That blonde wig looks totally awesome!! (Who would have thought?!) Big day tmrw! You’ve got this, Sandi!! You’re right where you need to be: fully informed, proactive, in charge, connected by wise docs, and surrounded by a crazy large army of friends and family who are always, always ready to stand in and care, pray, and love on ya and your family. We are ALL here now and ready to make our stand, too, right next to you ! Now, let’s go get this damn thing kicked out already!!! 🙂

    Liked by 1 person

  12. Looking amazing in blonde 😉 you will do great tomorrow!! Will be sending all the positive thoughts and prayers your way.. you can do this, best of luck to you and your mom, much love ❤️

    Liked by 1 person

  13. My mom has always been a wig person and her wigs have always been short blond and curly. She used to give me and my sister her old wigs to play with. We looked ridiculous. Now that she’s 80+ and her real hair is so thin, she wears a wig every day (still blond and short, but slightly less curly). She fell a few years ago and we came to take her to the ER. She insisted on putting on her wig. We never had the heart to tell her it was on backwards.

    Personally I love the blond. I fried my hair many years back to get it a lighter color. It turned out more orange than blond. I should have saved my hair and gotten a wig.

    Liked by 1 person

  14. Great work! You and God make a magnificent team:) He has been preparing you all along for this part of your story, even though you didn’t know it. Thinking of you and praying for your first day of chemo. Love and many hugs, Superwoman!

    Liked by 1 person

  15. You are truly a warrior princess! I am so proud of and inspired by you. Learning to advocate for oneself – cancer or not – is something I think most of us struggle with. And to see you do it with such intelligence, persistence and grace under the most difficult of circumstances is a revelation. Chloe Kim should be wearing a Sandi wig! I’ll be thinking of you all day today. I especially want to know whether you make an infusion friend. Other people I know who have gone through chemo always seem to make infusion friends.

    Liked by 1 person

  16. I actually love the blond look a lot! But you can pool off many different looks, as we established. Definitely need to see the stripper wig though. I hope your first treatment went as well as it could and wish you the best possible outcome with the least possible side effects. Best of luck to your mom with her surgery and speedy recovery!

    Liked by 1 person

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