Going Quietly Into The Night...

Day -6

I hate to keep on driving a point, but for the sake of perhaps only my amusement I will... again. What a difference a day can make... well actually a few hours... five-ish to be exact.

Hmmm, can five-ish be exact?

Yesterday, Tuesday, was the start of this last leg of chemo... the proverbial carrot if you will... it marks the end of the line for the chemo. As previously mentioned... we have the dubious distinction of adding yet one more (and last) toxin getting pumped into to Emmah's little veins... Melphalan. It didn't take long for it to introduce itself... within an hour she was hugging her pink tub... a.k.a. the puke bucket... a constant friend and adversary all in one.

Previously, during her last rescue, she was taking Ativan and Benadryl to cope with the nausea... she long swore off Zofran, Kytril (and the like) claiming that they didn't work for her... Zofran and Kytril are specifically for nausea. She got to liking the Ativan and Benadryl since they make her sleepy and they allowed her, in most cases, to sleep for several hours. The draw back to that, at least from where I was sitting, was it kept her in a semi-stupor. It was acceptable to me since she was comfortable and I knew it was temporary... at least until the bulk of the nausea had passed.

They all try, and have tried, their collective bests to coax her into taking something for the nausea, but she's held steadfast and resisted their efforts. After verifying (long ago) that it wasn't a mandatory thing, I for one was not about to get on her bad side and make her take anything. She is old enough and if she feels like it wasn't working, and didn’t have to, I for one wasn’t going to push it on her… besides, if she feels that it doesn’t work, then half the battle is already lost. She was holding off on taking any Ativan Tuesday morning because Julie and the girls (a.k.a. the estrogen club… EC for short) were coming out and she didn't want to be all loopy when they were here... so she suffered until the EC went home around one in the afternoon. I had already given the nurse the heads up to administer it as soon as the EC had gone. They left, she did... and Emmah fell asleep.

Now earlier this same morning, during rounds, the doctors tried again and presented a different drug... Emend... it's taken once a day for only three days and it lasts for like a month or something and it's usually given to the older patients. Though Emmah really isn’t quite in that group, they felt she was on the cusp, but it involved talking a capsule. A what? A capsule... not available in IV form. This was met with an immediate no as Emmah has yet to learn how to swallow pills. As you might imagine, this inability has presented a whole slew of obstacles to overcome. Anyway, they went on and explained that there are three things that make up this new approach. I say new because it was new to Emmah/us. It entailed taking the Emend, getting on Zofran and adding Decadron… they said that they work best when all three are given. Emmah still rejected it. So I kinda took the “oh well” position and said ultimately she’s the one to pay the fiddler. Moving on from this point…

The EC arrive and Emmah is in full glory... rather upsetting to watch. I’m all too familiar the routine and have become somewhat immune to it, Julie on the other hand is not and I could see it was bothering her. Don’t get me wrong, it bothers me too, I’ve just seen so much of it I’m like teflon. It wasn’t the visit that Julie, or Emmah for that matter, was envisioning. With a slight detour to the parent’s lounge to pop a bag of microwave popcorn for the road, the EC was preparing to leave when we ran into someone we’ve befriended here, Sue, and we got to talking. Her daughter, Megan, who’s either 16 or 17, is in for her second transplant as well (different protocol) and had taken the Emend and was feeling great… that was enough for me. I said my good-byes to the EC and set off to inquire if the capsule could be opened up and taken mixed with something… the way Emmah likes it. You see… the ONLY way we can give a pill to Emmah is to crush it up and mix it with melted ice cream. She doesn’t like liquid meds... complaining about how they taste. Then she complains about how the crushed pills taste. She gets so worked up at times causing the meds to react as if they’ve hit a trampoline somewhere in her esophagus… in and back out. We’ve said to her time and again that there’s a reason behind learning how to swallow pills… pills generally taste bad when you crush them and by swallowing them whole, you bypass that taste. Getting her to take any kind of med orally is a major production that is usually preceded with “I wish I didn’t have to take this”.

Sorry, I digress…

I discover that the capsule can be opened and taken… fantastic! Now my next objective is selling it to Emmah… who now is starting to feel the Ativan. I figure that she’ll be less confrontational this way… less being subjective naturally. Not surprisingly she’s a tad bit resistant. In trying to coax her into this, I ascertain why she doesn’t want to give this a try. Ready for the irony here? She’s afraid that she’ll throw it back up. So I ask… What’s one more time then? To which she replies… “I’ll have to take it again and again and again until it stays down”. Makes me dizzy… I asked her what have I ever made you take that wasn’t mandatory? (The answer to that is nothing by the way… ‘cept for this time) I told her that I was putting my foot down and that we were going to give this a try. This was met with some crying and her emphatically saying that she wasn’t going to take it. I let her drift off to sleep and asked the nurse to get it all together, that we were going to do this. A couple hours lapse and now I have it all ready on the spoon with the melted ice cream complete with a cherry on top. I wake her up and slip her the mickey… and she drifts back off to sleep… but before doing so, she sez that she’s not going to take this tomorrow. Little bugger…

Jessica, the nurse practitioner, stops by like five minutes after I got it in her. She’s glad and sez all we need is it in for 30 minutes… meaning if she vomits after that 30min mark it’s safely in. She then tells me that she hopes it’s not too late and that this is more of a pre-med type thing… get it in before starting. Makes me scratch my head and think then why not Monday night with this then instead of after her chemo started Tuesday morning? I mean we were here. The upside to this capsule is that the inside is not a powder but tiny little beads (pellets, balls whatever you want to call them) about the size of a pinhead… hence no immediate taste to them. Much like certain types of the candy topping sprinkles that you might see on a cupcake… or in our house just sprinkles… sometimes eaten right out of the jar.

Well… this is kind of where we came in. With all three meds in and having napped until 6:30 in the evening, she wakes up hungry. Say again? I’m hungry… can I have something to eat? Ummm… sure, how about some crackers? She also told me that she was thirsty and wanted a Coke. Okay… whatever you want. She proceeded to eat 2/3rds of a sleeve of Club crackers and drank about half of a 20 oz. bottle of Coke... further proof that miracles do happen. Being fresh off a five hour nap, she then proceeded to stay up until about 3:30 in the morning… naturally. That also takes us to today… Wednesday… and good news… the eating continues. More crackers, more Coke, some juice, Doritos, and Lucky Charms (sans milk) and a very small taste of my breakfast of hotcakes and sausage.

By the way… in case anyone is wondering, she did take it today without any fanfare even saying that she didn’t taste it, only the ice cream (which incidentally will be vanilla tomorrow… she tried chocolate today) and she will take it tomorrow, Thursday as well. She still won’t give it (the Emend) any props saying that it was the single dose of Ativan that was enabling her to eat like that.

Oy vey!