Tag Archives: medication

Off the Sauce and Other News

Betty (and her related side effects) have been keeping me busy this week. Monday required a trip to the GI to get checked out and another dose of Remicade for the colitis. Then Tuesday it was back to Boston to see the oncologist and get checked out by my surgeon. So, in chronological order…

I’m scheduled for one more dose of Remicade, which I’ll get in another month. In the meantime, I’m stuck on this low fiber diet, although I’m allowed to slowly add some foods back in. Still no raw vegetables allowed, but small amounts of cooked ones are okay, as are small amounts of whole grains. I just have to be careful not to eat a lot of either at once. *sigh* I’ve been feeling fine for the past week (aside from bloating, which I blame on the damn diet, and being stuck in a prednisone fog). No nausea.

I am officially done with the nivolumab and possibly any further immunotherapy. No surprise there. So now we just have to hope that the doses I got were enough to keep Betty in check or kill her altogether. I get scanned again next week, which is good because…

Since I’ve been out of the hospital, I’ve been experiencing ear pain again. Now, I had pain around my ear for most of last year, but for the past couple months it had gone away. I’d hoped it had gone away for good. I mean, is it normal to still be experiencing pain almost a year post-surgery? I don’t know. No one does. But it’s back, both sharp pain inside my ear as well as dull soreness where my glasses sit on the cartilage.

Neither oncologist nor surgeon detected any lumps in the area, and surgeon said everything looked healthy when he searched inside my ear. But then, that’s how Betty rolls. She’s a master of disguise. Surgeon thinks, however, the pain is most likely either being caused by dryness tightening the skin or by the nivo jacking up my immune system and causing it to go crazy around the area, irritating the nerves. Since I remember the pain increasing last summer after my second nivo/ippi dose, this does seem possible (and consistent). I hope that’s all it is anyway.

I’d say I’ll know more after the scans, but as I already stated, Betty is a master of disguise. Luckily, she doesn’t seem to be able to hide in my lungs, so that will be a good indication of whether she’s making a return elsewhere. And so it goes. Please let March be a kinder month than February!

Thanks, Obama!

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.


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!


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.


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.

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.

Finally, An End Is In Sight

Insurance has approved me for the colitis treatment. I should get my first dose on Wednesday. Amazing how just knowing relief is potentially coming can make you feel a little less shitty.

Pun totally intended.

This means back-to-back trips to the hospital next week, but I can deal. Just make this stop so I can sleep again and get back on the Kill Betty Juice.

The Situation, 10/14/15

The Summary.
I haven’t done one of these in a while. I’m tired, so I’m not feeling creative. It’s the colon’s fault.

The Details.
Saw my doctor and my surgeon yesterday. Saw the GI doctor today. That’s a lot of doctors in little days, two trips to Boston in two days, and my colon is waking me up multiple times a night. I need sleep.

We are all in agreement (well, not the surgeon since this is out of his area of expertise, but the rest of us) that the prednisone isn’t cutting it. So I’m going to be switched to the real hard core colitis-busting drug. Don’t ask me to name it, never mind spell it, because I’m too tired.

It has to be administered via IV (yay, more trips to Boston because they won’t do it locally!), but it should take care of the problem. Most likely after only one dose. Three is the most anyone in my situation has needed, and they will schedule me for three doses to be prepared.

It’s super potent so it comes with a lot of potent risks, including TB, lymphoma, and… melanoma. Yeah, we are aware of the irony. I’ve been assured that those risks are very minor in my situation; they tend to only occur after prolonged used of the drug. (Since it’s used to treat Crohn’s disease, for example, most people who need it take it for years, and that’s where the risk comes in.)

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