And not for nothing. Baby doll commented that for his hand surgeries, they left his stitches in for 2 weeks each time and HE'S healthy! Here I am, malnourished cancer girl AND they're sewing up skin that has been previously radiated which they told me heals much slower than regular skin, and they took my stitches out after one week. Something just does not add up.
So, yesterday was the first full day of being home and it took some adjusting. After springing out of bed at 7:15 and buzzing around as I am wont to do, I crashed pretty hard at 9:30 am. Yep, just a little over two hours later. Baby doll pointed out that I had just had an entire week of mostly bed rest, not to mention the major surgery I had just gone through. Good points. Sooooo, the rest of the day was pretty much an hour of buzzing, an hour of resting, an hour of buzzing, an hour of napping, an hour of buzz.............
This morning I was out of bed at 6:15. Took care of the animals, took care of all my sundry personal chores....which I need to start timing out. First I eat, then I mix my power cocktail of medications, then I take some pain meds, next is suctioning and then stoma care. After that is mouth care then getting dressed. I decided that showering is such a pain in the ass that it's only going to happen every couple of days. After all the rigamarole listed above, I was once again wiped out and went back to bed for a nap. Baby doll woke me up when he arrived around 8:45.
Today was errand running day. We went to Walmart so that I could load up on tissues, Windex, gauze, non-stick sterile pads, and dog food. I also tried looking for the little sponge suckers that they had given me in the hospital when I had the PEG put in. Turns out those things are really coming in handy! No go at both Walmart and Walgreen's. While baby doll was in Walgreen's, and I awaited him in the car, I ended up finding them on Amazon. They're called Toothette Oral Swabs. They were $34 for a box of 250 of them (and free shipping). Meanwhile, Walgreen's sent us to a medical supply place just a few blocks from where we were. That place had them as well but they wanted $55 for 250 of them. My sponge suckers will be here from Amazon next Thursday. Luckily I've been hoarding the ones from the hospital so I should be okay until then. :-) The most important item at Walmart today was picking up (30) utility washcloths. I walk around with one of these hanging out of my mouth all day long to prevent leaving a slimy trail of drool wherever I go! (Did you know that you swallow automatically 2-3x per minute? Now imagine that you can't swallow. Yep.) I even have one in my mouth when I go to sleep at night, otherwise the drool running down the side of my face wakes me up. This was happening last year as well. The difference is that last year, once the swelling went down, I was simply able to resume swallowing. This year, with so much of my tongue missing, even after the swelling goes down, I'm going to have to learn how to swallow the saliva in my mouth. At least that's what they're saying. Last night I'm pretty sure while I was laying in bed, some saliva finally managed to go down on its own. And I'm still making the swallowing movements from time to time and they feel regular to me so I'm hoping this isn't going to be as big of a deal as they're making it out to be. We'll see after a few more days of letting the swelling continue to subside.
Anyway, got off on a tangent there. We hit Home Depot next where I bought another plastic cupboard to house all of my feeding supplies in the spare bedroom. Then finally it was off to Wegman's. I tried picking up my prescriptions first. I thought I only had one prescription there but they said they had two for me. And one of them needed to be mixed by the pharmacist. So, we hung out for a bit and then they told us that the one they were mixing isn't supposed to be put through a PEG and they needed to contact the doctor. So they gave us a beeper and we went shopping. Just as we were finishing up the beeper went off. It turns out the prescription they were trying to fill was for an antibiotic but I was already on one of those. So somewhere a mistake had been made. They credited back my $50 co-pay and we were finally on our merry way.
Baby doll and I got home, put most of the stuff away, and ate lunch. We started playing cards while we were waiting for my 'feed' to finish up. Yeah, guess I'm a slow eater. :-) As soon as it was done, we took a power nap. Then we put together the cabinet and got the last of the medical supplies straightened around. Phew. It feels good to finally be organized! Tomorrow it's all about cleaning this place (man, who knew short haired dogs could shed so much?!?). And then I'll be ready to settle in to some kind of routine.
FINALLY, I got to cook for my oh so marvelous man. I think I mentioned previously that he requested that I try out a burrito recipe on him. I found two recipes that I liked, but I wasn't in love with either of them. So, I took what I liked about each one and combined them. Success! Baby doll said it was most excellent! The only feedback he had to give me was that I had sprayed them with cooking spray and flipped them halfway through because the recipe says to 'brown' them. Baby doll says he likes his tortillas warm but soft. So, no spray or flipping next time.
Hmmm....what other excitement has been going on......
Even after eating my 6 cans of feed yesterday I got the munchies later on in the evening so I went ahead and had can #7. Yeah, what can I say, I'm a pig. My scale said 113 this morning which is good because I had gotten all the way down to 109 right before the surgery. I'll be setting up (or I should say Scott will be setting up for me) an appointment with the nutritionist next week. I'm going to ask her if it's safe to put the CBD's through my PEG. I'd like to supplement with those throughout the day and see if I can get myself back up between 120-125.
The insurance company called yesterday to let me know my short term disability has been approved. I started to do a happy dance up until they said it's been approved through 10/16. Say what? I don't think that's going to cut it. I have a message in with our HR Dept. at work to find out what I'm supposed to do about it.
I don't know what it is with me and this mister pump but we're having a hard time getting along. I turned it on last night and went to sleep. I woke up an hour later, used the bathroom, and checked the water level in the mister. It hadn't moved. Okay, that can't be good. It then occurred to me that the night before, I could actually see vapor mist coming out of the hose and I didn't remember seeing any when I first went to bed. After tinkering around for 10 minutes I finally figured out that a nut on the machine had vibrated loose causing there to be no pumping of air. As soon as I tightened it, I was back in business. And without going into too much graphic and gross detail, just wearing that mister for an hour is a HUGE help to my lungs. I really need to keep a better eye on what's going on with that wretched piece of equipment from here on out.
Andy and Kim are trying to rot my brain!! Last year they got me hooked on The Walking Dead and tried to ensnare me with Entourage although that's still waiting for me on my Smart TV. I haven't given it a whirl yet. This year they got me Season 2 of The Walking Dead, Season 1 of Homeland, and Season 1 of Newsroom. I'm guessing they think square eyeballs will look attractive on me. ;-P
Speaking of attractive..........not..........here's a picture of the lovely mess that I am. I actually took this yesterday and the incision looks even worse now. Can you see where the skin isn't even touching edges right above the stoma hole?? Ewwww.
So the hospital gave me two of those cute little crochet covers. Both of which are currently dirty. I also have some really pretty scarves that my friend T brought to me the last time she was here. I'm going to give one of those a try tomorrow to see how they work. The stoma cover has to be breathable obviously. I poked around on the web and ended up finding this website: http://www.stomacoversandtrachbands.com. She has some really cute stuff! I sent her an e-mail tonight requesting to purchase 5 of her products.
Okay, that about does me for the day. I'm off for some pain meds and then I'm going to lie down. Might watch a Kim and Andy DVD, might play a game on my iPad, might read a magazine, might zonk 3 minutes after my head touches the pillow. I'll just have to see how it plays out. :-)
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