Welcome to Cancer Week!
This new primetime lineup brings you all the excitement you could hope for in a Stage IV lung cancer experience. You’ll get excitement, drama, and the thrill of a new colloquialism, without commercial interruption (because I will never use the brand name of the drug I’ll be taking. No matter what a miracle a drug is, no one should be in thrall to big pharma. There’ll be no free advertising here.)
Mac the Knife
I met with the head of the gamma knife program in person Tuesday, mostly because I think I should meet anybody who’ll be messing with my brain. He was a charmer, full of information and groan-provoking jokes. The highlights:
- That thing in my brain is about the size of a dime, and maybe there’s another one, too. Not to worry– they’ll go after anything they find.
- They use some hemorrhoid-like cream to numb the spots where they screw in the frame. “That’s why we can call you butt-head.” har har
- Once the frame is in place, they can say I’m “screwed up.” har har
- They use a frame instead of a mask (insert medical reasons here) but mostly because he’s the head of things and he should have some clout around there. har har
- He wouldn’t joke around if it were really serious, he said. In fact, he thinks it’ll take about five minutes to plan the treatment and a half hour to deliver it. It’s simple and straightforward. I ought to be home in time for lunch.
Afterwards? I might want to take a nap. But I ought to be good to go the next day. No special instructions needed. I feel pretty calm about the whole thing. Plus, Xanax.
Going for Broke
What’s got me on the edge is the new medication I’ll be starting. This is not chemo. It’s a TKI, tyrosine kinase inhibitor. (Find more than you ever wanted to know about this here. It’s pretty interesting.) Much of my time over the past weekdays has been spent on the phone, talking about the cost of it, taking it, and side effects from it. Actually, more about cost than anything else.
Apparently, the $2400 copay is the real number we’ll pay until we hit the maximum out-of-pocket expenditures, the one that lands us in the Catastrophic category, when the copay goes down to just below what we pay for our house. As my daughter texted, WTAF*.
I discovered this through an hour-plus conversation with Dan, from my insurance company. No matter what I did, I could not figure out how they arrived at the copay number.
- Cost of drug: $16,000 (give or take)
- Insurance cost: $14000 (give or take)
- My calculated cost, or 25% of the tier 5 specialty drug: $4100 (give or take– because, after $100, how can it matter?)
But the site kept saying, $2500. I’m not into surprises these days. So I called and said, “WTF?” The lovely young woman checked the numbers online. “Yes,” she replied cheerily, “The copay is correct. $2500.” Now, I’ve never been a math diva, but I am pretty astute when it comes to being played. The last thing I needed was to expect to pay one bazillion then experience a little bait and switch, where we’d owe two quintillion more.
“Where did you get that number?” I asked. “Because as near as I can figure, 25% of the cost of the drug is not $2500.” A rooster sounded in the background. “May I put you on hold?” she asked. She came back on the line with a cheery, “Thank you for patiently waiting.” (I had the urge to say, how do you know I was patient?) (But I digress.)
We did this dance a couple of times. Finally, with full rooster accompaniment, I took her through a play-by-play. “If I start with an actual cost of $16,000 [give or take], and the insurance pays $14000 [give or take], and I’m contractually obligated to pay 25%, there is just no way I come up with $2500. In my universe, one quarter of 16 is always 4. Perhaps it’s different from where you sit [with the rooster], but the nearest explanation I can give is that $2,500 is the difference [give or take] between the pharma cost and what the insurance pays.” “May I put you on hold?” By this time, she had stopped thanking me for my patient waiting. The rooster, however, was going strong.
Eventually, she came back and acknowledged that, although she’d arrived at my number, she could not explain it. That’s when she put me on hold again and again as she called up the pharmaceutical chain of command. Eventually, 56 minutes later, she got to the oncology department of the specialty pharmacy. That’s when I learned $2500 was a pity discount. (They didn’t say “pity.”) (We didn’t qualify for the get-it-free program.)
So the TKI gets special-delivered Thursday (for you science geeks out there, here’s more detail.)
Don’t Touch My Meds
The universe decided I needed more phone calls, so the cancer center pharmacy and the specialty pharmacy that ships me the medicine spent more than an hour and a half reviewing the hoo-ha about it. I think the only thing you need to know is that it is so toxic YOU CANNOT TOUCH IT. Only I am allowed to handle it. In the event that you’d want to come over and play with it, you’d have to wear gloves. And I must refrain from randomly juggling the pills from one container to another lest some dust or other fragments get released into the air. (To think, this is something I will voluntarily ingest.)
Frosting School to the Rescue
Below is a little birthday cake I made last weekend. Simple, with tiny frosting things and a chocolate drip. I’m currently enthralled with tiny things. Where meditation just throws me into an endless spin of thoughts and images, tiny frosting things demand all my focus or they all come out looking terrible.
I’ll make a cake for a 15 year-old girl next week, for which I’ll be working on tiny stars.
Thought for the Day
I’ve begun a small collection of images and sayings to inspire, make me smile, and remind me to put on my big girl pants and go into the day– because I can.
Here’s hoping you get an opportunity to explore the life-giving force of exclaiming WTAF in your week.
Thanks for reading.
*What The Actual Fuck. A more intense expression of disbelief/disgust/disdain than the more common WTF or, What The Fuck.
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Images
- TV by Marc Pascual
- Rooster by Dean Moriarty
- Diamond pills by Liz Masoner
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