Yeah, no sarcasm there. Thanks for the Obamacare and the institution of out-of-pocket maximums. Two nivolomab treatments, plus a handful (less that $100) of assorted small prescription charges, and I’d hit my out-of-pocket max for in-network expenses by February 2nd this year. Note: I hit that even before the first of my two hospital stays.
*faints*
Would it actually kill me? I don’t know. Would I almost be willing to risk it? Maybe.
The steroids seem to have me stabilized again. This time, the docs have already transitioned me off the IV version and onto my old friend prednisone. There will be no more assuming that I can transition to that and real food simultaneously.
Thursday is the earliest I can be released. That gives them one day to fully observe me on real food. Everything I eat is watched, from when it goes in to how it comes out. The poor nurses.
That leads me back to pizza. I wasn’t allowed to eat anything until this afternoon, and I was ready to gnaw on my sheets. Finally, I’m back on clear liquids. Maybe tomorrow, soft, bland food. Oh, the possibilities. When I get out, it will be more soft, low fiber food for a week. And lots of steroids obviously.
In the meantime, I’m trying to keep entertained, and waiting to have my IV diet (for electrolytes) removed so I can circle the ward for exercise without making such a racket. It’s an exciting but, for the moment, mostly pain free life. Beats needing to be carried out of the house by paramedics any day.
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?
Actually, I erupted some time ago, but I’m finally getting around to posting about it.
Based 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.
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 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 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.
I can’t laugh. Or smile really. Well, I can but it feels weird and probably looks weirder. But I still have to make fun of my situation because it’s either that or mindless rage, and mindless rage will only get you so far. So here I go.
Top 6 Reasons Why Half A Working Face Isn’t All Bad
6. I should be able to get half off any Botox injections.
5. My jaw hurts if I speak too much so I now have a socially acceptable reason to not talk to people.
4. Everyday can be Talk Like a Pirate Day when you have a good excuse for wearing an eye patch.
3. Since I can now raise one eyebrow independently of the other, I could be the main character in a YA novel.
2. Not even Alan Rickman can sneer as well as I do.
1. Everyday I suffer, I know I’m still alive.
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.
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.