I’ll explain that headline in a little bit. But I hooked you in, didn’t I?
So it’s been about 2 weeks since I’ve updated and there is still not really any news nor any eviction date yet.
Took us a little bit to get my tests scheduled, but 1 week ago I spent an entire day at Northside to get my brain MRI (good news: I DO have a brain!), bone scan (results on that in a sec) and pulmonary function/arterial blood gas tests. Looks like I passed the PFT with flying colors and I can give away part of my lung.
I was supposed to get my PET scan last week but found out at the last minute that my insurance company denied the PET scan because it is “experimental for restaging soft tissue sarcoma.”
“That totally makes sense!!!!!” – said no one, ever.
Why restage? Because I’ve been doing chemo and it’s been 9 months since my last PET scan, they want to see if the tumor is still the grade they thought it was before by looking for metastases (spread) of the cancer. It’s unlikely, but above a certain grade the treatment is not surgery. Also, sarcomas are known to metastasize and even though my sarcoma (as poorly studied as it is) is less likely to do so, it’s super important we double and triple check.
But PET scans are expensive (about $7000-$8000). And knowing that my surgeon refuses to operate without one, Aetna put us in a bit of a stalemate: Deny the expensive PET scan, avoid paying for the even more expensive surgery. My insurance company thought they were winning until a little thing called Twitter came into the picture.
I’ve learned a thing or two about tweeting about my bad customer experiences with large companies: it almost always gets you what you want.
So I tweeted this:
Yo @Aetna—so the scans I need are “experimental?” Nope. You know what’s experimental? Insurance-based medical decisions. #getwiththeprogram
5:57 PM – 23 Mar 2016
2 2 Retweets 5 5 likes
Within 5 minutes their social media customer service agent contacted me to start a complaint case. They emailed me and we started a conversation. I dug around in the Emory library online for a handful (ok, 10…) articles that proved that PET scans are anything BUT experimental in soft tissue sarcoma and also wrote them out a price breakdown for how paying for the PET scan would actually save them about $10,000 .
They were obviously messing with the wrong patient. There was no argument.
There was a good bit of back and forth and he said/she said for the next week, but finally yesterday Aetna approved my PET scan. Thank heavens! Despite flexing my smart research girl muscles, I was starting to feel pretty helpless.
By the way—for anyone who cares—all the other major insurance companies (Medicare, Blue Cross, United Healthcare) also have the same policy for soft tissue sarcoma restaging.
In the meantime, I got a call from Dr. Moore earlier this week who told me that my bone scan showed that my tumor has invaded my first rib.
No no no no no no no no no!!!!! NOT THE FIRST RIB!
That was most definitely my initial response. And still how I feel about it. See, being a PT, and knowing 4 million PTs, just about everyone has said to me since learning I’d have to have ribs 4-6 removed (myself included), “Well, at least it’s not your 1st rib.”
And that’s putting it nicely. I said much more expletive things in the quiet and comfort of my own home.
So I won’t bore you with all the anatomical and functional reasons that it totally sucks, but I will say it makes the reconstruction and recovery a bit more complicated and intense.
So between that news and my insurance company being an annoying pain in the butt, I was swimming in a sea of anger and rage for a few days. Seriously, a few friends who saw me said “Whoa, your face is red! Get a lot of sun?” Me: “Oh no, that’s just the rage.”
So you can probably then imagine the elated joy I felt when the insurance company called yesterday and informed me they’d approved my test.
Also yesterday I met with the plastic surgeon: Dr. Greg MacKay. Fantastic guy. He spent a lot of time with me examining me. He was very meticulous at coming up with options for incisions and reconstruction that will give me the best outcome at both appearance and function. To be honest I care less about the appearance and more about the function, but I certainly appreciate all efforts to retain as much “normalcy” as possible. He understands that being able to use my right arm for work and fun (like swimming!) is pretty important to me, so he’s going to make every effort to spare the muscles I need the most for those things.
In a nutshell what will happen is Dr. Moore will remove the ribs he needs to remove, place the metal struts, then Dr. MacKay will close me back up and make it functional and “normal” again. Oh yeah and somewhere in there we’ll all say #adiosbenedict. Minor detail 😉
Dr. MacKay was also very straightforward and spent a good deal of time going over my questions about when I can begin PT (which we had to clarify: begin PT as the patient not the therapist), how long I’ll be in pain/uncomfortable (6-12 months), and how long I’ll really take to recover (a long time). And that has nothing to do with his part of the surgery, but everything to do with Dr. Moore’s. According to Dr. MacKay “When you mess with the ribs, it just really gets uncomfortable.”
So, I’ll accept it and we’ll move forward. I feel good having a very caring and meticulous team on my behalf—no matter how much it sucks. And it will.
So today I’ll have the PET scan and savor my hour+ of mandatory meditation time since I’m not allowed to do anything while the radioactive goop absorbs into my body. Let’s all cross our fingers there is good news out of that so that we can continue to move forward! It goes without saying that I’m eager to get this show on the road!
Oh and the part about my nude modeling experience. I know you’ve been on the edge of your seat about that. There’s nothing like posing topless in front of a fancy camera getting shots of your chest from all angles (and not getting paid for it).
I’ll end the post there. 🙂