Tag Archives: surgery

Off the Sauce and Other News

Betty (and her related side effects) have been keeping me busy this week. Monday required a trip to the GI to get checked out and another dose of Remicade for the colitis. Then Tuesday it was back to Boston to see the oncologist and get checked out by my surgeon. So, in chronological order…

I’m scheduled for one more dose of Remicade, which I’ll get in another month. In the meantime, I’m stuck on this low fiber diet, although I’m allowed to slowly add some foods back in. Still no raw vegetables allowed, but small amounts of cooked ones are okay, as are small amounts of whole grains. I just have to be careful not to eat a lot of either at once. *sigh* I’ve been feeling fine for the past week (aside from bloating, which I blame on the damn diet, and being stuck in a prednisone fog). No nausea.

I am officially done with the nivolumab and possibly any further immunotherapy. No surprise there. So now we just have to hope that the doses I got were enough to keep Betty in check or kill her altogether. I get scanned again next week, which is good because…

Since I’ve been out of the hospital, I’ve been experiencing ear pain again. Now, I had pain around my ear for most of last year, but for the past couple months it had gone away. I’d hoped it had gone away for good. I mean, is it normal to still be experiencing pain almost a year post-surgery? I don’t know. No one does. But it’s back, both sharp pain inside my ear as well as dull soreness where my glasses sit on the cartilage.

Neither oncologist nor surgeon detected any lumps in the area, and surgeon said everything looked healthy when he searched inside my ear. But then, that’s how Betty rolls. She’s a master of disguise. Surgeon thinks, however, the pain is most likely either being caused by dryness tightening the skin or by the nivo jacking up my immune system and causing it to go crazy around the area, irritating the nerves. Since I remember the pain increasing last summer after my second nivo/ippi dose, this does seem possible (and consistent). I hope that’s all it is anyway.

I’d say I’ll know more after the scans, but as I already stated, Betty is a master of disguise. Luckily, she doesn’t seem to be able to hide in my lungs, so that will be a good indication of whether she’s making a return elsewhere. And so it goes. Please let March be a kinder month than February!

I Have A Wick In My Ear

I have no important updates yet. I’ve called my oncologist’s office three times in the last week trying to find out what’s going, and my doctor has not responded. Even his administrative assistant told me she’s unhappy about this, probably because she has to keep fielding my annoyed calls. How did we go from hands flailing, you-must-get-down-here now to silence? I don’t know, but I’ll be calling tomorrow. Again.

Meanwhile, last week my ear started getting clogged again after two weeks of blissful not being clogged. By Saturday morning, it stopped draining completely, and I haven’t been able to hear out of it since. (My husband just loves that I’m constantly asking him to repeat himself.)  Surgeon #1’s office directed me to Surgeon #2, and I saw him today.

Apparently, the skin graft in my ear canal is swollen. So he put a wick (basically a spongey stent) inside the canal, and now I’m on antibiotic ear drops for the next two weeks. Also, my ear canal is cold because it’s propped way open. Also, also, I still can’t hear because of the stent.

I might be paranoid that a bug will fly in. Hopefully, this paranoia is unfounded and ridiculous.

The Situation, 4/14/15

The Summary.
I can’t write the post I was going to write. We are probably tossing the kitchen sink. Waiting sucks.

The Details.
Once again, I’ve been thwarted by Betty. A couple weeks ago, my oncologist called Betty aggressive but dumb, and I was going to make a joke about Betty being frat boy joke. Of course, now I can’t because Betty might not be as dumb as we thought. I was also going to write about the really unpleasant surgery I’d agreed to that would remove the last bits of my ear and leave me with permanent hearing loss. But I can’t do that now either because while we know there has to be more of Betty left in my ear, really unpleasant surgery is no longer worth the potential benefit. I’ll explain.

Continue reading →

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.

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! 🙂

The Situation, 3/3/15

The Summary.
Met with an ear surgeon today. Met with another ear surgeon today. Betty travels more than I do. Insurance sucks.

The Details.
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.