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*
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).
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.
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.
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?