Tag Archives: FU insurance

I’m So Inflammatory I Could Be A Republican Presidential Nominee

No wait, sorry. I guess I’m just inflamed? Whatever.

I’ve been remiss with my latest update. On July 18th I saw a rheumatologist (actually several at once) at Marvelous Ginormous Hospital. They poked me, prodded me, and asked a lot of questions. Then they sent me to have blood drawn.

They agree with my oncologist that my issues (random swellings, including congestion, and hair loss) are probably autoimmune and caused by my treatment. But they don’t follow a normal pattern and don’t appear to be classified as any kind of known disorder. No known disorder means no treatment plan – none other than high doses of ibuprofen until my foot swelling goes down anyway.*

*Spoiler: it’s been a week and half, and the swelling hasn’t gone down.

So while I wait and grow steadily balder, the rheumatologist is going to confer with an ENT who specializes in autoimmune-caused sinus issues. And that’s where I’m at. Swollen and shedding, but breathing. (Until insurance cuts off my sinus meds which yes, they did, but my original ENT found a way around that. Because she’s clever and they’re assholes.)

Back On The Sauce

I’m either getting lazy at this blogging thing, or there just hasn’t been a lot for me to write about. We’ll be nice to the cancer patient and assume the latter.

Anyway, I’m back on the nivolumab as of Tuesday. One dose down and no adverse effects yet. (But hey, they build. Remember?) I’m on an every other week schedule unless side effects start making that too frequent, in which case dosing can be slowed down since the clinical trial is over.

I was supposed to restart in December, but snow forced me to cancel that appointment. Then work switched our insurance providers as of the new year, so I had to wait to get my new information, then wait for the hospital to confirm everything. Still a little nervous about that last part just because of ridiculously complex hospital database systems and massive amounts of money. And also that every time the hospital staff tried contacting the insurance provider, the provider’s servers were down. (The lovely hospital staff person I spoke to on Tuesday assured me this is totally normal during January when everyone has new insurance, and the insurance companies can’t handle the server traffic. Nice.)

Fingers crossed that if Betty was thinking of getting ornery, this will beat her back down.

Yay for Drugs

No, really. Yay for drugs that work, and work more quickly than anticipated!

I got my first Remicade infusion on Wednesday, and although I was warned it would most likely take up to a week or even longer before I started noticing effects, I noticed them immediately. Yesterday, I was better than I was on Wednesday. Today, I’m almost normal.

Almost normal. Do you have any idea how long it’s been since I’ve been able to get through the day without taking any immodium? I’m on my second 100-pill package since August.

I’m supposed to call my doc’s office next week to update them on how things are going. Since the Remicade seems to be working, it sounds like they’ll start reducing my prednisone dose. It has to be 5mg or less before I can restart the Kill Betty Juice. This could take a few weeks. Plus, the GI definitely does want me to have a second Remicade dose regardless of how well the one works.

But finally, it looks like I might be moving forward again. Angry Colon(TM) is calming the hell down at last.

Ironically, insurance is late to the party as always and just today I got the notice in the mail that they were denying me the drug. Presumably, next week, I’ll get the letter telling me they reversed the decision.

The Situation, 10/14/15

The Summary.
I haven’t done one of these in a while. I’m tired, so I’m not feeling creative. It’s the colon’s fault.

The Details.
Saw my doctor and my surgeon yesterday. Saw the GI doctor today. That’s a lot of doctors in little days, two trips to Boston in two days, and my colon is waking me up multiple times a night. I need sleep.

We are all in agreement (well, not the surgeon since this is out of his area of expertise, but the rest of us) that the prednisone isn’t cutting it. So I’m going to be switched to the real hard core colitis-busting drug. Don’t ask me to name it, never mind spell it, because I’m too tired.

It has to be administered via IV (yay, more trips to Boston because they won’t do it locally!), but it should take care of the problem. Most likely after only one dose. Three is the most anyone in my situation has needed, and they will schedule me for three doses to be prepared.

It’s super potent so it comes with a lot of potent risks, including TB, lymphoma, and… melanoma. Yeah, we are aware of the irony. I’ve been assured that those risks are very minor in my situation; they tend to only occur after prolonged used of the drug. (Since it’s used to treat Crohn’s disease, for example, most people who need it take it for years, and that’s where the risk comes in.)

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As The Colon Churns

Just a brief update and a rant.

So the higher dose of prednisone didn’t make a difference. My nurse practitioner (NP) thinks raising it any higher, therefore, is also unlikely to help. And especially since raising it some more comes with its own risks (and I’m already experiencing minor side effects like elevated blood sugar from the current dose), she’s started lowering the dose again.

Along with the lowering, I’m trying some OTC drugs with it. We’re getting creative here, just looking for ways to manage the symptoms. As a researcher, I like doing experiments. I’m less enamored of doing them on my intestines, but so far the NP’s ideas might be helping a little, which is better than nothing.

Now for the rant. About insurance, what else? I run out of prednisone on Monday, but I have one refill left. Only insurance refused to fill it because I went through the first prescription too quickly. Well, yes, that’s because my dose was raised. But insurance doesn’t care. They made my doctor send in a completely new prescription.

Only that wasn’t good enough for them either. They STILL insisted it was too early for me to obtain more because that’s not what they originally approved, never mind what the doctor wanted. Apparently, doctors aren’t allowed to change their minds or adjust medications as necessary.

Finally, this was straightened out such that the pharmacy will be allowed to fill my new prescription on Sunday, the day before I run out. If they’d had to wait another day or two, I’m not sure what we could have done, but prednisone is apparently not a drug you can just cut off. Well, you can, but it’s not medically advisable. And we all know how much insurance cares about that.


The Situation, 5/12/15

The Summary.
I can hear again. My blood is still not lethal. Insurance sucks as usual.

The Details.
The good news first. My three-month HepC virus check came back all clear. So I’m still down one lethal disease. My liver functions are all normal too.

I also had the wick removed from my ear, and the surgeon said the inflammation has cleared up. I can hear again, which should make the husband happy.

And now your semi-regular rant about “health” insurance. The bastards decided the scans that I was supposed to have today were too near my last set, so they denied them. I found out two hours before I was supposed to have them. Gee, thanks. If I hadn’t needed to go to Boston to see the surgeon too, I’d be even more furious.

They’ve been rescheduled for next week, giving Betty more time to regroup. I think they’re in league with her. On that thought, could attacking an insurance company be considered self defense if you suspect they’re trying to wait out your death?

Because That Makes Sense

Those plans I mentioned in my last post? They’re changing, but I’ll have more on that when I can confirm things.

Meanwhile, I was supposed to have scans on Monday, but my insurance couldn’t promise they’d make a decision about whether to approve them until end-of-day Tuesday. So now the scans have been moved to Wednesday. Gah!

And what makes this doubly infuriating and ridiculous? Look what I got today!new meds

Those are the first month’s supply of the BRAF-targeting drugs that my doctor ordered. They were approved and overnighted with Saturday delivery by my insurance company.

Know what I can’t do? Take them until well after my scans are completed and decisions about my next steps are finalized.

So yeah, makes perfect (lack of) sense. What a waste of money because health insurance in this country is fucking ridiculous.

Planning the Unknown

Brief update: Insurance approved my CT scan, so tomorrow I get to be injected with radioactive dye, then I have a hearing test. Bring on the fun!

My editor emailed me the other day about some marketing strategies to consider for the release of the next book in my urban fantasy series. And while I’m considering her suggestions, I can’t silence the nagging voice in the back of my head (or is it in my ear?) that whispers: “What’s the point? Should you really be concerned with selling books under the circumstances?”

I hate that voice. It’s the same voice that asks me why I would consider replacing my shoes that are falling apart with new ones when who knows how much more walking I’ll be doing anyway, and how I dare I be so stupid as to consider writing a new series when I might not be around long enough to finish it.

I hate that voice because I realize some of the things it tells me are just good sense.

But it’s also a terrible way to live.

Mostly, I’ve been trying to carry on as much like normal as possible. I can’t go around constantly imaging Betty’s swinging a pendulum over my head and that every day it’s getting closer. (Honestly, I have no idea if that Poe reference is appropriate here, but I blame my mother for letting me listen to Poe stories at a very young and impressionable age for why that’s the image that came to mind.)

It’s not as though the doctors have told me I have X amount of months left to live. No one has yet suggested I start reading up on estate planning. (I feel silly even typing that.) And yet, I feel the need to be realistic and practical. Actually, it’s not a need. It’s who I am, and I can’t change my personality.

So when does realistic interfere with normal? And when do those options collide with the opposite end of the spectrum? The voice that tells me: “Go on and eat another brownie, buy the damn shoes, live it up while you can!”

Every decision becomes a philosophical debate in my head.

Mail Roulette

It’s always exciting to spin the great postal wheel in the sky check the mailbox these days. I get to play a little guessing game. How many insurance statements will I find? How many hospital/doctor bills?

Today’s tally: 2 insurance statements, 3 bills.

That brings this week’s total to 7 statements and 5 bills, and there are two more days left.

This isn’t actually a particularly high weekly total, at least not for the insurance statements. When I was going through my daily interferon infusions last year, every single visit was a statement, every blood draw and lab test was its own statement, and every person who read my chart or who said “hi” to me resulted in yet another statement. I was getting 8×11-sized envelopes from my insurer stuffed full of statements, up to 10 at a time, multiple times a week.

The bills however… well, thankfully, last year my insurance covered more. I fear the bills have yet to reach their peak.