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.

The Situation, 4/1/15

Disclaimer: This is not an April fool’s joke although that would have been nice.

The Summary.
Betty is on steroids. I’m healing. We’re going nuclear.

The Details.
I had seven fucking centimeters of tumor removed from my ear. I’m still not over this, but damn, no wonder I was in so much pain. Obviously, the fact that Betty is getting fat and happy changes things. My oncologist is breaking out the nuclear option, and I don’t just mean radiation. Chant with me: kill kill kill!

First, some more surgery stuff. The surgeons got seven centimeters everything they intended to get. Unfortunately, they couldn’t get nice, wide margins because Betty had grown down to my bone. Apparently, my bone looked healthy (and this time the surgeons had no issues identifying what was cancer, versus last May when they had to guess), but we all know Betty is a bitch and has likely sent out cells that are as yet undetectable.

Based on that, I’m most likely looking at a three step plan.

Step 1: We need to make sure Betty is still acting weirdly. That is, make sure she hasn’t taken up residence elsewhere in my body. I need another CT/PET scan. This is happening on 4/6.

Step 2: Assuming Betty is still just hanging out in my ear, I’m going to start radiation after my ear heals. I won’t have more information on this until I can meet with the radiation oncologist (this is happening on 4/3), but it will likely involve 5 days a week for up to 6 weeks of treatment. I’m told it would be very localized and shouldn’t be too bad.

Step 3: After radiation, I’ll probably be starting new medications. These are the drugs that target melanomas with the BRAF mutation that I mentioned before, and they are generally very effective for a brief time. They aren’t usually given to people in my situation (usually they’re given for larger, more widespread tumors), but my oncologist’s hope is that if I start them when there is very little of Betty left, they might be able to wipe out the rest of her.

The good news is that I continue to heal well from surgery. In fact, if necessary, there’s still more of my ear left that could be removed. Yay?

Betty Is The Beast

Seven centimeters.

Seven fucking centimeters. This is the size of the tumor they removed from my ear last week. I can’t even wrap my brain around that. Go ahead, google how enormous that is. I’ll wait.

The CT scans (done in January and again in February) showed it as a “speck”  or at least that’s how my oncologist described it. Neither of the surgeons nor my oncologist were expecting anything like it.

There’s more to tell, but for now I just need to process how Betty grew to seven centimeters when surgery last May got clear margins on her.

Leaky Humor

“How do you feel, Georgie?” whispered Mrs. Weasley.

George’s fingers groped for the side of his head.

“Saintlike,” he murmured.

“What’s wrong with him?” croaked Fred, looking terrified. “Is his mind affected?”

“Saintlike,” repeated George, opening his eyes and looking up at his brother. “You see… I’m holey. Holey, Fred, geddit?”

Mrs. Weasley sobbed harder than ever. Color flooded Fred’s pale face.

“Pathetic,” he told George. “Pathetic! With the whole wide world of ear-related humor before you, you go for holey?”

-Harry Potter and the Deathly Hallows

Still Not Dead

Supposedly, surgery went as planned. I got to take my ear patch off today. Woohoo. What’s left of my ear looks like an earthworm wrapped around a piece of yellow gauze. A very bloody earthworm. I’ll spare you the photos. The gauze is sewn into my ear canal so I can’t hear on my left side.

Monday’s arrival was at 1, and we ended up leaving the hospital around 8:30 (the surgery itself started around 2:30 and took a little over 3 hours). I was actually feeling well enough to go home. This was either due to a miracle or that fact that the doctors gave me every anti-nausea drug they had, including a motion sickness patch.

Besides removing much of my ear, the doctors took two skin grafts from me–one around my collar bone and one on my upper right arm. Those patches are more sore than my ear, which so far hasn’t been too painful. My throat is also sore because fluid keeps leaking down it.

On the even more fun side, I can’t get my head wet, and my hair is crusted with blood. I’ll probably scare small children and squeamish adults when I have to go for my surgical follow-up next week. Also, I can’t stop smelling blood. I really wish I could shower. Please think cleansing thoughts for me.

In all, it hasn’t been as bad I expected. I’m definitely in less pain now than I was before. Here’s hoping the third surgery will be the charm. And that I won’t need to go back for any pieces the surgeons missed.

Not Dead Yet

The following update was posted by Mr. Nemesis. I was not coordinated enough to post myself after surgery. 

Today I went down to MGH and bid fond farewell to one of my two best friends, and I don’t mean my pals in the Winnebago.  Hopefully, my left ear’s sacrifice was not in vain and Betty went out the airlock with it.  I’m currently stuck in traffic on the way home and will probably crash as soon as I get home.  Before then I may take a few of the new narcotics the docs prescribed me and hope they work better than percocet, which sucks.

Tomorrow, hopefully, I will post a real update and not rely on Al, who seems notoriously unreliable and rather colorful in his postings.

An Ode to My Soon to Be Departed Left Ear

When it comes to left ears, you’ve always been (p)earless.
In the face of Betty’s attack, you’ve always stayed (f)earless.
So rather than mourn you, I celebrate and stay (t)earless.
And never, my dear, will I remember you (ch)earless.

Alas, prior to surgery I must remain (b)earless,
So empty is the glass I raise to you, (d)earest.

 

What do you want? I never claimed to be Shakespeare.

left ear

The Situation, 3/13/15

The Summary.
Surgery is scheduled. I can hear. Things can always get worse, and that’s actually good.

The Details.
My surgery has been scheduled for Monday, March 23, in the afternoon. This is me giving the world’s quietest cheer. I’m in pretty much constant pain at this point, so even the surgeon (#1 for those keeping track) suggested I might feel less pain post-surgery. I might need an overnight for this one, but they will make that determination the day of. I have never needed an overnight hospital stay in my life, so this is weird.

My CT scan showed what the surgeon expected to find, which is not great (great would be “Hey, looks like Betty has gone into spontaneous remission!”), but it’s not as bad as it could be. With cancer, so long as things could be worse, there’s reason to remain hopeful, I suppose. Anyway, Betty has not reached my bone so I won’t be losing any bits of my skull, and she’s not too deep into my ear canal. Basically, she hasn’t gone anywhere yet that makes surgery impossible. Surgeon #1 and my oncologist are still hopeful that they can eventually cut out all of her. Given those circumstances, they might not opt for radiation yet.

In more minor news, I had my hearing tested on Wednesday after my CT scan, and I was told I have perfectly normal hearing. It’s nice to know something about my health can be described as normal.

Thank you to everyone who has sent me cards and photos recently! I love the baby photos! 🙂

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.