Complaining on the blog must have done the trick. Doc’s office called yesterday, and my CT scan plus follow-up appointment have been scheduled for the week of May 11th.
This is not the blog post you’re looking for.
My oncologist called yesterday evening with my scan results, which was tip-off #1 that this was not going to be a good call. My scans showed a couple very small spots in my lungs.
Apparently, spots can sometimes show up on scans for no reason, and my doctor claims he is 99% sure they are nothing but normal aberrations. But this Betty. The bitch hid 7 centimeters of tumor in my ear. My doctor can be optimistic, but I know what we’re dealing with.
As of now, the spots are too small to biopsy. Obviously, if it turns out that Betty has finally learned to travel, things change. The current treatment plans are now on hold because of it. We wait and I’ll get scanned again in a few weeks. I’m going to see the doctor on Monday to discuss more.
And tip-off #2 that things are bad, despite my doc’s 99% optimism? It went like this:
Doc: I see you have an appointment with Surgeon on Tuesday. Can you come down to meet with us both on Monday instead?
Me (thinking, hell yes, I’ll have to make that work): Sure.
Doc: I can do anytime after two. What works best for you?
To me, that speaks as loudly to BAD as the time my dermatologist gave me her personal cell number.
Says the insurance company employee who called to tell me my PET scan was denied.
Are you fucking kidding me?
Disclaimer: This is not an April fool’s joke although that would have been nice.
Betty is on steroids. I’m healing. We’re going nuclear.
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?
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.
Met with an ear surgeon today. Met with another ear surgeon today. Betty travels more than I do. Insurance sucks.
Both my biopsy sites came back positive for Betty. On one hand, not surprising. That’s just my luck lately. On the other, I was surprised to hear they found more cancer in the area they cut last year. Regardless, this does not please me. Betty needs to learn her place, which is out of my body.
As for surgery, it still isn’t a guarantee at this point, but everyone seems to agree surgery followed by radiation is the best option. So I think it’s safe to assume it’s coming. Ear Surgeon #1 says it would be a tag team effort between him (outer ear guy) and Ear Surgeon #2 (ear canal guy). And yes, he did comment about how crazily specialized everyone is.
What this means is that I will have a hole in my head. (Because I need that like I need a hole in the… Never mind. It’s too easy to make jokes.) All the cartilage in the bowl of my ear, plus the skin, and maybe some bone in my head will be gone. The docs probably won’t know how much to remove until they go in.
I should still have a ridge to hang my glasses on, and it should not affect my hearing or balance except temporarily while I heal. Skin grafting might be involved, and as always, the docs want to assure me that they can build me a new ear. I guess people worry about these things? I can see being concerned if it was my nose they had to remove, but I just want Betty out. Priorities, people! I’d rather be alive and freaky looking than pretty but dead.
Surgeon #1 suggested it was okay to say “no more.” To be sick of being cut open and to leave things be or try other treatments. Ha. If this is the best option, then it has to be done. If my ear must be a casualty of war, then I accept it as collateral damage. (Ask me whether I regret typing that while I’m recovering.)
Surgeon #1 wants me to have another CT scan so he can see what’s left in the area post-biopsy, but as usual, my insurance is balking. I tentatively have the scan scheduled for next week. I’m fairly sure my insurance’s master plan is to fight everything in the hopes I’ll die sooner and they’ll have less to pay out. Fuck insurance right along with Betty.
Surgeon #2 wants me to have my hearing tested in both ears to generate a baseline. Surgical complications could result in hearing issues in my ear that would need treatment over time. Also, if Betty goes deeper into my ear, then eventually it could affect my hearing. So establishing the baseline is important for monitoring changes.
I read an entire book yesterday while on the bus and waiting for appointments, and I drank three cups of coffee because I had to be up at 4 a.m. and didn’t get home until 6 p.m. I’m still exhausted. If this post is incoherent, that’s why.