Tag Archives: TMMI

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*

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?

Back on the Other Sauce

So that second dose of nivolumab seems to have done what it took four nivo/ippi doses to do last summer. Sunday night I started with nausea and mild stomach pain. By Monday the pain had worsened. By Monday night I was vomiting. By Tuesday, well, the same (drugs did NOT help), and I had an appointment to see my oncology team on Wednesday. By Wednesday, I was in such agony that I ended up in the local ER instead.

In conjunction with the oncologist’s office, they ran a buttload of tests on me, gave me good IV drugs to control the vomiting and pain, and finally some IV steroids and sent me home. Unfortunately, those steroids wore off in half the time they were supposed to. So, as today progressed, I went from minor pain in the morning back to kill-me-now pain around noon.

I’m now back on the prednisone (and waiting for it to kick in, damn it), and tomorrow I’m being admitted to the hospital after seeing the oncologist. I was told to plan for at least one night, possibly more. I’ll be getting IV steroids again and the same drug they gave me last fall for the colitis.

It doesn’t appear that this is colitis, at least not the same sort. It’s my upper GI track going nuts this time, and I sure didn’t have the pain last time. I’m kind of longing for the last time actually… At least that was controllable with immodium. This defies control with even most prescription drugs.

Here’s hoping I make it through the night! If it gets worse or the prednisone doesn’t tide me over, I’m under instruction to get back to the ER. And just when I thought things had gotten so dull around here that I had nothing to blog about.

I’ve Erupted

Actually, I erupted some time ago, but I’m finally getting around to posting about it.

my footBased on my dermatologist’s best guess, which is based on biopsy results, I’m covered in fixed drug eruptions. Thankfully, in my case, they’re so far mostly confined to skin that has very little hair, so my feet, underarms, thighs, and the backs of my knees have it the worst. I even have one between my fingers. Also thankfully, it’s winter. I look like I’m covered in chicken pox.

On the plus side, if they’re still around in short-sleeve weather, I suppose they’ll be helpful at keeping people away in public spaces. I’ll just pretend to scratch a lot, and hope people assume whatever I have is contagious…

I’m told that when they go away (whenever I stop taking the drug that’s causing them, which could be anything) that I’ll be left with patchy, discolored skin. Awesome! I suppose that’s hundreds of new excuses to cover them up with pretty tattoos.

Speaking of which, it’s about time for my annual fuck skin cancer, skin reclaiming tattoo, and these annoying spots are interfering with my original plan.

Yay for Drugs

No, really. Yay for drugs that work, and work more quickly than anticipated!

I got my first Remicade infusion on Wednesday, and although I was warned it would most likely take up to a week or even longer before I started noticing effects, I noticed them immediately. Yesterday, I was better than I was on Wednesday. Today, I’m almost normal.

Almost normal. Do you have any idea how long it’s been since I’ve been able to get through the day without taking any immodium? I’m on my second 100-pill package since August.

I’m supposed to call my doc’s office next week to update them on how things are going. Since the Remicade seems to be working, it sounds like they’ll start reducing my prednisone dose. It has to be 5mg or less before I can restart the Kill Betty Juice. This could take a few weeks. Plus, the GI definitely does want me to have a second Remicade dose regardless of how well the one works.

But finally, it looks like I might be moving forward again. Angry Colon(TM) is calming the hell down at last.

Ironically, insurance is late to the party as always and just today I got the notice in the mail that they were denying me the drug. Presumably, next week, I’ll get the letter telling me they reversed the decision.

No End to the Colitis

And the drugs make me more okay with that than I should be.

After two weeks on lower than the usually-given doses of prednisone, I’m feeling much better. My liver is mostly back to normal too. Unfortunately, my intestines are not. Because the lower dose hasn’t cleared up the colitis, on Tuesday my doctor decided it was time to bump me up to the full dose. (He was being optimistic and hoped I could get away without it.)

So, as of yesterday, I’m steroided-up, plus taking pills to control the side effects of that (pills to decrease the strength of my stomach acid and massive antibiotics). Hopefully, this will do the trick quickly.

In the meantime, I’m very calm and chill about all of this. Apparently, I’m among the minority of people who have an unusual reaction to prednisone. For most people, it winds them up, heightens anxiety, and provides lots of energy. For me? I’m super mellow, unfazed by pretty much everything to the point where I don’t feel safe driving long distances or in heavy traffic. It’s rather a pity because I was warned prednisone would make me want to scrub the house from top to bottom, and I was looking forward to the motivation. Instead, I’m smiling at dust bunnies and thinking how cute they are. This is probably better for my mental health because otherwise I’d be stressed about the colitis.

The Situation, 8/31/15

The Summary.
No news is no news is purgatory. Poop is a 4-letter word.

The Details.
First, just a quick update. I had my scans last Thursday, but I still don’t have the results.

Now, the real reason for this update. Poop is a 4-letter word. So is crap, shit, merd, and probably a hundred other words for feces. In fact, feces looks suspiciously like a plural, so let’s just call it fece and throw it in the mix.

Medical professionals, however, prefer to refer to a patient’s bowels or stool. (Except my doctor, who likes to tell me it’s time for a poop talk. I guess oncologists have to get their levity somewhere.) Anyway, apparently, my doctor is concerned that my “stool” has not been fully “formed” for the past three weeks, nor has its condition improved. Actually, it’s probably getting worse. Toss in some increasing nausea (how one can think about poop constantly and not get nauseated is a legit question), and guess who gets scheduled for a colonoscopy!

Shittiest birthday present ever!

Yeah, that’s right. I turned 39 today, and my doctor gave me a colonoscopy appointment for a present. (I am totally repentant about any previous birthday disappointments, slights, or sadness.)

So that’s scheduled for tomorrow.

I’ll be in the corner with my laxative-flavored Gatorade. Oh, who am I kidding? I’ll be in the toilet with it. Please have a slice of birthday cake for me since I’m not allowed to eat solid foods.

In conclusion, Betty has become a little shit.

I Challenged Betty

I lost.

This can only be my fault. At lunch yesterday, while talking about how much Betty sucks, I said something along the lines of, “So far, the side effects haven’t been too bad. Pretty much anything has been better than having my face partially paralyzed.”

Unknown to me, Betty said, “Challenge accepted, bitch.”

At this point, I don’t know whether it’s an intestinal virus or side effects that are causing my distress, but I am distressed. I was supposed to have my last ippi/nivo treatment today, and it didn’t happen. Doc wants to be very cautious since colitis is a possible, serious side effect (most likely caused by the ippi).

So I wait. I’m tentatively scheduled to make up my treatment on Thursday, but that will depend on how things go tomorrow. It’s possible treatment could be pushed to next week, or that I’ll end up skipping this last one.

I am distressed. I am displeased. And I am disgusted. Because ugh.

A Long Day For A Short Visit

It took 2.5 hours to get to Boston this morning (rush hour) and another 1.5 to get back. All so I could spend 15 minutes with my surgeon. But hey, he’s such a nice guy; it’s a pleasant 15 minutes.

Also, he said reassuring things. For instance, my ear looks good still. No sign of an infection or the unhealthy/irritated skin I had prior to surgery. He did clean out some gunk, the result of the grafted skin not working quite like normal ear skin, and that helped the clogged sensation a bit. According to him, this is around the time when my nerves should be healing and reconnecting, so it would be completely typical to feel pain and possibly other weird sensations as my brain tries to make sense of the confusing signals the nerves are sending. Even some small skin debris could feel unpleasant.

He also felt up my face and neck, as docs tend to to do. The nodule over my ear that he believed was tumor is still gone, and apparently I had a hard lump under my ear too that he described as suspicious. That was there a few weeks but is now gone as well.

So while this certainly isn’t conclusive, it’s reassuring. And probably worth having needed to get up at 4:30 a.m. to get to my appointment. Now I want a nap before my second doctor appointment of the day…

The Situation, 7/26/15

The Summary.
Glasses are in. Betty’s being a pain. Maybe.

The Details.
Sorry it’s been a while since my last post. There’s been nothing much to write about. Last Tuesday I got my third dose of the Kill Betty Juice, so there’s only one more to go! (For Phase 1 of the study, that is. Whether I move to Phase 2 depends on how well Phase 1 works.)

Is it working? I really don’t know. Signs had been pointing to yes, but some pain has started returning this last week–around the ear, in the ear, up my skull, and down into my jaw. Those nerves are all connected, which makes pinpointing the source difficult. It’s hard to say whether it’s Betty’s signature pain, as well, because I think some of the pain that I had once assumed was Betty pain, was actually being caused by something else (that lump below my ear, which was probably either a cyst or an infection). My current pain is similar to that pain and to some Betty-style pain, mostly at the spot where my glasses rest on my ear. It’s very mild, for the moment at least.

My eyes are still wonky too. I can’t focus my left eye while wearing contacts anymore, and wearing contacts also exacerbates the redness. So for now, it’s glasses everyday for me. Neither the ophthalmologists I saw, nor my cancer doc, are too concerned as everything else about my eyes appears fine.

The holding pattern continues. Any other side effects have been mild. I’m going to mention the pain to my local doc this week, but I’m guessing nothing is going to come of it until I get new scans at the end of August.