Author Archives: Betty's Nemesis

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).

Death by pizza

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.

Fooled you

Said my body to me.

I got the good drug Saturday evening and things were looking up. The hospital discharged me Sunday afternoon. Then everything went to hell.

Was taken by ambulance from my house to the local ER Sunday night, and from there by ambulance back to Boston. I’m back on the IV steroids, etc., and am currently waiting for more information. Been rescanned, re-X-rayed, sucked dry of blood once more. Just hoping there’s no re-colonoscopied in there too. Sleep would be nice, but the closest I got was being knocked out with morphine.

On the plus side, I got into the cancer ward this time so I have a very modern, private room with a beautiful view of Cambridge. It’s practically luxurious. Still sucks though.

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.

Back On The Sauce

I’m either getting lazy at this blogging thing, or there just hasn’t been a lot for me to write about. We’ll be nice to the cancer patient and assume the latter.

Anyway, I’m back on the nivolumab as of Tuesday. One dose down and no adverse effects yet. (But hey, they build. Remember?) I’m on an every other week schedule unless side effects start making that too frequent, in which case dosing can be slowed down since the clinical trial is over.

I was supposed to restart in December, but snow forced me to cancel that appointment. Then work switched our insurance providers as of the new year, so I had to wait to get my new information, then wait for the hospital to confirm everything. Still a little nervous about that last part just because of ridiculously complex hospital database systems and massive amounts of money. And also that every time the hospital staff tried contacting the insurance provider, the provider’s servers were down. (The lovely hospital staff person I spoke to on Tuesday assured me this is totally normal during January when everyone has new insurance, and the insurance companies can’t handle the server traffic. Nice.)

Fingers crossed that if Betty was thinking of getting ornery, this will beat her back down.

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.

Still Kicking and Kicking Ass

Scanxiety was for naught! Scans came back even better than last time. No sign of tumor around my ear, and “infinitesimally” small spots in my lungs. So small, it’s hard to say whether they’re tumor.

According to doc, people who show an immune response like this tend to keep going until the tumor(s) are gone. So no guarantees, but it’s a good sign. In fact, he suggested I might not even need the second round of treatment. But I’m going to get it anyway to be safe. It’s just not something we need to rush. He wants to get me off the prednisone first, so that’s what we’re working on.

And on that note… Happy Thanksgiving!

The Situation, 11/21/15

The Summary.
Scanxiety* strikes. Not much else.

The Details.
I’ve been slacking in my updates, but there really hasn’t been much to update. On Thursday I had my latest round of scans (CT and MRI), and I should find out the results on Tuesday at my regular appointment. I haven’t had any treatment since my last set of scans in August (thanks, colitis) so this could be… interesting. It’s quite possibly a test of just how long-lasting the effects of the treatment might be.

Also on Tuesday, I might be able to resume treatment. I’m on a low enough dose of Prednisone now, so my doctor gets to decide whether I’m ready. I might not find out until Tuesday, which would be annoying.

*Thanks to Sue for sharing this term.

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.