Yesterday morning I was prepared to publish a rant against my insurance company as far and wide as my social networks extend if I didn't get an approval by noon. At 11:15 a.m., I got a call from my oncologist's office that the approval had come through; I started chemo again today. I know I'm lucky to have access to and coverage for the most cutting-edge medicine available. But the last ten days have given me a tiny peek into the window of those who are constantly fighting with insurance (or don't have it at all). It was a scary, dark, infuriating place to be.
I was prepared to beg, fundraise, sell all my clothes on e-Bay, do whatever it took to get this done. But at about $15,000 worth of infusions every three weeks, indefinitely, we were looking at upwards of $225,000 per year out-of-pocket. And even though it FEELS like we pay that much toward my law school loans, our pockets do not run nearly that deep.
Here's what the last ten days have taught me. You MUST be your own advocate. You must demand treatment. You must be relentless, be the biggest pain-in-the-ass your doctor's office and the insurance company have ever seen. Before the approval came in yesterday, I finally told my doctor's office I was going to start treatment today; it was up to them to make it happen, whatever magic wand they had to wave. I learned that you DO NOT GIVE UP.
This experience also got me thinking (again) that if insurance companies started paying for screening earlier and doctors started listening to young women who come in with concerns about their breasts instead of insisting that it must be fibroids or blocked milk ducts, then maybe we could start to really cut down on costly, aggressive treatments for advanced disease. Here are a couple of other women in my camp, reiterating this point.
When you find out you've got cancer, time seems to move as if it's trying to swim through mud. You watch the clock constantly as you wait for answers, wait for treatment, wait for a cure. Because you've been through this before and know how well your cancer responds to chemo, you know how important it is to have the poison that will save your life. You are eager for it. You try to fill your time with phone calls to someone - anyone - who might be able to help.
I found out on Tuesday, July 17th that my cancer had come back. Recurrence is one of the scariest words that exists for people who've had cancer. And amazingly, the sky did not fall; there were no floods, tornadoes, or locusts signaling the end of days. I felt like my world was crashing around me, but the mail still got delivered, clients still scheduled meetings, and a group of people walked into a midnight screening of a movie in Denver never to walk out again. Life -- and its chaotic twists -- kept going.
My doctor's office promised me we'd have an answer from my insurance company about starting chemo within 24-48 hours. It took about eight days longer than that. That's one day longer than it took God to build world and still have one day leftover for resting. Eight days is an eternity in insurance decision limbo land. There is almost not enough Xanax out there to get a person through those excruciating moments. Luckily, I also have a lot of love. My supporters - and the messages of strength they send me - continue to amaze me.
I've got three little masses in my lymphatic system - so not all that bad, as far as Stage IV cancer is concerned, if you can find a silver lining. But I've also got an extremely aggressive cancer (grade 3, HER2+ for those of you who know this stuff). Every day without treatment is another day my cancer had time to grow, evolve, spread its tentacles into the rest of my body. I know I can beat this; I just needed the (readily available, already in stock at my doctor's office) medicine.
It took nine days of swimming through the murky, muddy, shitty waters of the insurance world. I've said it before + it bears repeating: I do not know how people face this without insurance coverage. Something in our system needs to change, starting with paying attention when requests from an oncologist's office are stamped "URGENT".