Tag Archives: pathology

You think your valentine’s weekend was bad? Let me make you feel better.

By 6 on Thursday, I was in such pain that it didn’t seem wise to wait until Friday to see the doctor. Following the nurse’s instructions, we did not pass go, did not stop at Quaint Local Hospital (who doc’s office is sure is perfectly competent but is not Magnificent Ginormous Hospital, and therefore can’t be trusted to know colitis from a heart attack). So we roadtripped to Boston.

The ED had been told to expect me, so we sailed through registration and triage. I sent Mr. Nemesis home around nine, having packed the essentials for an overnight. (Loaded e-reader, phone, charger, toothbrush, deodorant. But no hair brush, damn it. Still, not bad planning for someone who spent most of the day curled in the fetal position.) I was admitted and taken to a room around 11 where I proceeded to get no sleep because I was being constantly prodded, and I had enough blood drawn to feed Dracula. (Can they just draw from your IV? No, they cannot. Some tests require individual stabbings from multiple spots. I dunno, in case your left arm blood doesn’t match your right?)

Somewhere between arriving at the ED and midnight, the prednisone I took in the afternoon must have kicked in because the pain and worst of the nausea went away on their own.

Friday morning I was treated to the next step: a colonoscopy and an endoscopy. Guess what a last minute colonoscopy requires? Enemas!

TMMI COMING! YOU’VE BEEN WARNED! SKIP AHEAD IF YOU MUST.

Water enemas require you to lie on your right side for 15-20 minutes while your colon is blown up like a water ballon. You’ve had no sleep, no food, you’re nauseas, and now you’re being water boarded out the ass end. Then, when you can’t take it anymore, you’re allowed to dump the water, which seems like if should want to be dumped a lot more easily than it actually does. If you ever questionned whether our species was intelligently designed, this will answer that for you. Since I hadn’t eaten much in the last 48 hours, I was told I did pretty well at not cursing every living thing in the vicinity. Being given dilaudid and thus not giving too many fucks probably helped.

END TMMI.

Thankfully, the mix of the dilaudid I got with the enema along with the sedatives during the scopes meant I didn’t wake up gagging with a tube down my esophagus this time. On a related note though, I was completely spaced prior to the procedure. What is my birthday? Let me think… Lawyers, pay attention. Should something turn out to have been screwed up during the procedure, those consents I signed are totally invalidid.

Upshot from the scopes. My colon is normal. My upper intestine is inflamed, and that seems to be preventing food from leaving my stomach. Enter pain and nausea. While it can’t conclusively be said that the nivo is causing this, it’s the obvious culprit.

So I’m on IV steroids, an IV stomach acid reducer, occasional anti-nausea drugs, and the usual other drugs they have to give you to keep you alive on bed rest. I’m also on a liquid diet. Since Friday morning, all I’ve eaten is 8 oz of chicken broth and a couple spoonfuls of jello. Strangely (or not under the circumstances), I haven’t been hungry. For the record, however, I do not recommend this as a weight loss treatment.

Meanwhile, I wait for results from the biopies that were taken during my scopes, whether I’ll get better drugs, real food, and when I can leave. I really want to leave.

My roommate has a large, loud, rude family, and they are around constantly. Putting aside my introverted tendencies, they talk so loudly I can’t hear myself think, they talk about food in front of the patient with nausea, and they joke about not waking people up right next to me as I’m trying to sleep. Roommate asked this morning if they bothered me. And look, I’m not yet at the point where I’m going to freak out on an 80-year-old woman with diabetes, breathing issues, and possibly cancer. But I’m getting close. As for her grandchildren who brought food into the room though? I hope they experience the joy of having their colons turned into water balloons like the unintelligently designed shit sacks they are.

In fact, that might be the sole upshot from this mess. I have a new way cursing humanity. And believe me, I have much to curse.

So, feel better yet?

Then Versus Now

Me, before treatment began: I don’t care how bad the side effects get, I can deal. I am NOT taking prednisone. I’m tough and can suffer through anything.

Me, yesterday: You’re prescribing me prednisone? Oh, thank goodness. Give me that stuff now!

So, doc’s office called yesterday afternoon. My biopsy results were back earlier than expected, and they showed mild inflammation of the lower intestine and liver that’s consistent with my treatment. Yesterday evening, I picked up a prescription for what I think is a pretty low dose of prednisone. (If you don’t know what prednisone is, it’s a steroid frequently given to cancer patients (and many others) that acts as an anti-inflammatory, but it packs a nasty punch of its own with regard to side effects).

I took my first dose last night and my second this morning, and I’m already in less pain. So yay. Doc’s office will call to check up on me Tuesday, and they want me to come in and see them on Wednesday. By that time, they assure me I should be feeling much better and, thanks to the prednisone, will probably want to eat everything in sight. Ironic for a drug that includes nausea among its side effects.

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?

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.

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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.

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.

 

The Situation, 2/23/15

The Summary:

Still waiting on final biopsy results. More surgery is likely. Betty is a mutant has a mutation.

The Details:

The hold up with my next round of treatment apparently is because the lab has yet to finalize my pathology results, and so my doc can’t make final decisions yet. Two samples were sent to the lab – from the same spot as my last recurrence (last May) and from deeper within my ear canal. We don’t know yet which (or if both) came back as abnormal. Oncologist sent the lab an “I’m very disappointed this is taking so long” email yesterday.

Most likely what they’ll do is more extensive surgery.  I’ll probably lose my ear for real this time, followed by radiation. I’ll have a new surgeon too, a head/neck specialist who I’ll meet next week. Whereas in the past, the idea seemed to be to save as much of my ear as possible, now it seems to be to take an ice cream scoop to the area and remove as much as possible in order to save me. I’ll sacrifice an ear if necessary for the chance of a longer life.

Then there’s sort of/but not really good news in that Betty has a particular mutation (BRAF) that occurs in about 50% of melanomas. Last year we didn’t think I had it. Initial tests were negative, but the final/definitive genetic test came back positive. The mutation makes the melanoma extra aggressive and more likely to be deadly (boo!), but it also opens up more drug possibilities (yay!). The drugs are very good at shrinking the tumors, but their effects don’t last long for most people (7-8 months). So the goal for me would be to get rid of as much of Betty as possible before trying them. The less cancer cells I have left in me, the better the odds that the drugs can eradicate Betty.