Tag Archives: WTF

Hey there, update

Sorry it took me a while to post this. Life, ya know?

Some news since my last post. The pain has totally subsided, as has the twitching and tingles. My ear, inside, still feels odd, but it’s either getting better or I’m getting used to it because I don’t notice as much anymore.

Anyway, I met with my surgeon to discuss the weirdness, and he agreed with my oncologist that all seems normal. He’s not concerned yet, although he agrees we should keep an eye on things. He thinks it was actually strange (“rare”) that my face/head went back to normal in the first place, so on one hand, we shouldn’t be surprised that I’m experiencing these symptoms. The other, of course, is that it’s weird that the symptoms are only showing up now.

Basically, I’m doing these oddly as usual. So that’s all for the time being, hopefully.

You Won’t Like My Immune System When It’s Angry

Colitis treated. Two sets of good looking post-treatment scans. Obviously, it was getting too calm around here.

We can’t have that. It makes for a boring blog. So let’s backtrack to April…

Right around when I came off the prednisone, I started getting congested. At first, it seemed like the immune therapy might have caused me to have some nasty seasonal allergies. It happens. But the OTC allergy meds didn’t help. Nasal steroids didn’t help. My sinuses were so congested that even when I couldn’t breathe through my nose at all, I could feel them swelling more. My nose would literally throb as things smushed even more forcefully together. Also, I lost my sense of smell. My allergen tests came back negative, but things didn’t get under control until June when my surgeon put me on a prescription nasal antihistamine combined with a nasal steroid. I could breathe again (and eventually smell again), but if I stop taking them, I immediately re-congest.

May now. I wake up one morning and it looks like someone’s punched me in the left eye. The bruising goes away, but my eye remains swollen.

June. One day my left knee starts swelling. Over the course of a week, it becomes so swollen I can’t bend my leg. X-rays show nothing wrong, and my pain (and lack of it) confuses my orthopedist. She guesses it’s a strange meniscus tear, drains my knee, gives me a cortisone shot, and sends me to physical therapy. All seems well.

About two weeks ago, my hair starts falling out in large clumps again. I have no clue why.

Then July, last week. My right foot starts swelling and hurting. Wondering what the hell I did this time, I go to the walk-in clinic on Saturday because the pain is horrific. Again, X-rays show no damage. The nurse practitioner talks to me, and when I bring up my knee, she has an epiphany. This could all be autoimmune related. She orders three blood tests, and the one for a general inflammation response comes back positive. Yay? Answer?

Maybe. I saw my oncologist this morning, and in his words, he “takes responsibility” – it’s probably all treatment related. My immune system is “still really angry.” This is good for all things cancer, but obviously not so great for other things. Unfortunately, when people have these autoimmune responses to treatment, usually they follow a known diagnosable pattern. Mine appear to be random. (Doc told me again how I make his life difficult.)

So, now I wait and hope the orthopedist can drain my foot next week, but that doesn’t seem likely. Doc said the fluid is spread out; there’s no pocket to drain. I will cross my fingers anyway because my foot is huge, I limp, it hurts if I stand or walk too long, and I only have one pair of shoes (my Chucks) that fit. I am not happy. If I get too fed up, I might repeatedly stab my own foot at this point in the hopes that shit will leak out.

Meanwhile, doc and surgeon are going to discuss me and figure out where to send me next. I still can’t have a summer off. Last one was 2013. On the other hand, it’s not cancer.

*stab stab stab*

Home!

Home at last, and I lasted the night. One step at a time. Some fun observations…

1. I’m on the prednisone mellow. Everything’s just fine. Which is good because it means I don’t mind quite as much that…

2. I just lost as much hair in the shower as my husband has on his entire head. And more keeps coming out. Prednisone was doing that to me a little before this episode, but I’m guessing the IV steroids are primarily responsible for the clumps. Yay for hats and scarves.

3. My stomach is so bloated I look pregnant, but I lost about ten pounds. I’m sporting quite the cheekbones. Alas, I bet a lot of that weight is muscle because…

4. I have zero leg strength. I wobble as I walk and stairs are a challenge. I knew it wasn’t good when I walked the hospital ward, but I thought it was partially lack of food. I now suspect this will take more time to overcome.

But hey, I’m home! And in time to celebrate Mr. Nemesis’s birthday this weekend. Bring on the cake and pizza. I’m medically required to eat bad foods for the time being, so I’ll enjoy it until I start craving broccoli (which will probably be sooner than I can eat it).

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?

I Continue To Be Abnormal

But you already knew that.

I played Stump the Surgeon yesterday. Oncologist’s office made me an appointment with the surgeon because of my leaking, and he (surgeon) checked me out yesterday. He agreed with my oncologist that it’s Betty causing my paralysis, but he can’t find any sign of infection. Of course not.

So basically he has no obvious explanation for why my ear started leaking other than that it looks irritated from the cancer. (Not that this would necessarily cause leaking.) He also has no explanation for why my pain spiked then vanished, or why a lump on the side of my head has shrunk.

Wild card: the lump really was cancer and not an infection like I thought, and the treatment attacked it viciously. It’s not impossible–the treatment can work extremely quickly in some people–but it’s a very, very long shot.

He warned me that even if Betty is causing the paralysis, and if the treatment works, there’s no guarantee that my face will return to normal on its own. (Oncologist said he thought it would. But then, no one seems capable of agreeing on anything lately.) I also have some antibiotic drops just in case there is a minor infection somewhere.

And that’s it. Ugh.

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.

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.

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.