Thursday, July 24, 2008

The Big C Update

I was diagnosed in December 2007 with Multiple Myeloma, a blood cancer similar to Leukemia, and started radiation immediately. At some point, I recovered from the shock of diagnosis and started trying to make my own decisions. That included reaching out to a knowledgeable friend (Foodie Christie) and ultimately changing oncologists. I believe that was a good decision, but now I'm a teeny cog in what I call the Ginormous University Cancer Machine, and I occasionally have to yell and scream* to be heard.

I just finished chemo. My insurance company (we'll call them DieSuckah) tried three times to refuse to pay for the chemo drug - which, with insurance is about $7,000 a month (yeah, people without insurance die faster). Luckily, I have Supernurse G, who knows the ropes. She battled DieSuckah each time, until they realized that she was going to swing at every pitch, and gave up, agreeing to pay for the drug.

These insurance companies count on people giving up after the first refusal, or the second; certainly by the third -- even when they know that the drug/test/treatment should be covered. And if they're really lucky, you'll die **waiting. Know what's wrong with health care in America? Two words: health insurance. Don't ask me if I've seen "Sicko." I'm living it.

Now, my doc wants to do a PET scan, a radioactive contrast scan that provides not just anatomical and structural information, but information about metabolism and blood flow as well. It's used to detect and stage Cancer; it helps physicians decide about the best treatment, and assess the patient's response to therapy. And a head-to-toe PET scan costs about $4,000, so once again, I need preauthorization from DieSuckah. Are you surprised to learn that they're refusing to pay for it? Supernurse G is unfazed, so I'm not terribly upset; at least not yet.

But...the back-and-forthing can take, oh, let's say 7-10 days. And "when" we get approval, it will be at least 2 weeks before I can get on the schedule again. That means any treatment is delayed by at least three more weeks.

Unless DieSuckah gets lucky.
*Like after 6 weeks of telling my doc that the steroid dose was too high, I finally did a somersault and back flip into the room, ricocheted off the wall 4 times, threw a chair out the window, grabbed him by the lapels and nose-to-nose, screamed, "THE STEROID DOSE IS TOO HIGH AND TODAY IS THE DAY WE CHANGE IT." And we changed it, from 20mg 2x/week to 12mg 1x/week. Yeah, I'm about 75% less crazy.
Like after 3 months of complaining about hip pain, I again grabbed him by the lapels and said "LET'S FIND OUT WHY, SHALL WE?" (Hmmm - maybe he likes being grabbed by the lapels.) And we did a CT scan, which wasn't definitive. But nothing happened until I sent an email, asking "WHAT'S NEXT?" The screaming cog gets the grease.

**The same strategy is used by Social Security to deny Disability to people who deserve it. That's another story.

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