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!
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.
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.
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.