Thursday, July 8, 2010

#217: Breakfast in Bed for Pennsy

Tuesday in the Park
with Pennsy
Blogging in the early morning. Well, relatively speaking. I've been awake off and on since about 3:00 today. The Weather channel says it's 71 degrees in the Bluegrass, predicting a high of 94. Seems like a good day to get things accomplished early.

My sleep is a little out of whack, what with staying up 'till midnight on Tuesday to watch Merchant rehearsal. I don't regret a second of it, but it has thrown my routine off a little.

I've been trying to remember what exactly keeps me awake when I'm lying there in the night. Tonight it was hiccups. I start getting these hiccups that lead to nasty heartburn, really uncomfortable. It isn't something I can take a pain pill for because it isn't a chronic thing. It only happens when my stomach spasms which only happens when I move, or breathe, or sip water, or swallow. Antacids don't help because it isn't really acid reflux, I don't think. It's just more like belly trying to turn itself inside out. Hard to describe. Not nausea, not really. But very uncomfortable and not something you can just go back to sleep through.

Another thing is this nasty taste. Not really a taste in my mouth. It's actually the taste of my mouth. The doc explained that the white coating all over my tongue isn't thrush any more (great news, by the way) but it is dried saliva. It's like when you exercise out doors and your mouth starts to dry out and get sticky inside. There isn't enough water in my mouth to thin the mucus, so it just sort of coats everything in this slippery film. That's good and bad. Good because it protects all those tissues that might otherwise dry out. Bad because it tastes just really bad. This is all credited to the radiation, the only really consistent side effect that bothers me now that the magic swish 'n' swizzel is doing it's numbing thing on my throat.

I finally got up and fed myself today. That's kind of a pathetic milestone, I guess, but it felt like quite an accomplishment at the time. Here's how I eat breakfast. First I get a large clear carafe looking thing that we got from the doc and fill it with two cans of Ensure. Then I get half a glass of clear water and a 60 mm syringe. That's a big one with a plastic tip, no needles for me, thanks. Now I take the whole kit to the bedroom because I have to be lying at about a 30 degree angle. Too flat and the food washes up in to my esophagus and maybe even my lungs. Too steep and back-pressure builds up in the tube and stuff gushes back out. Yuch, on both counts.

Percutaneous Endoscopic Gastrostomy
(PEG) tube
 So I get myself propped up in an appropriate posture and roll up my shirt, exposing my still healthy belly and the mysterious PEG tube. It's about 10 inches of 1/4 inch clear plastic tube with a round bolster that looks like a big rubber washer to hold it in place on my stomach, a clamp to squeeze it shut, and a little hub at the end with a small hole and a large hole. Each hole has a rubber stopper that flips up so you can put food or meds inside. When I eat, I put a paper towel over the washer to catch drips. Then I draw food up into the syringe, open the stopper, put the syringe into the tube, open the clip, and verrrry sloooowly inject food. I take my time doing this so that I don't spill any. It's not cheap, and it's very sticky. When the first syringe is empty, I hold the tube straight up, pull out the plunger, let the fluid run past the clamp,and close it all up. Then refill and repeat. It takes me a lot longer by myself than when Mrs P helps since I only have two hands, but I have plenty of time, so no problem there. Besides, it feels good to take care of a few things for myself. And getting something in my belly always helps the hiccups.

When I'm done, I rinse a couple of syringe-fulls of clear water through the tube to keep it clean. I'm pretty conscientious about this, what with it being a little hose running directly into my innerds and all. I've put enough weird stuff into my stomach in the usual way over the years. No use letting anything sneak in through the side door.

I don't do the pills on my own. Not when we've got all the chemo/nausea/steroid/phych meds going at once. Mrs P and Mum's trusty chart keep me on track with that. Besides, there are a couple of liquids that need to be mixed and my hands are too shaky for compounding concoctions with little cups and spoons. So, the morning ablutions are now complete, just a little clean up left to do, then it's off to the clinic for some more radiation and a new day. Hope yours is good. Mine will be...


1 comment:

  1. Hiccups is one of the known side effects for chemo and it is constantly with John. The only time it lets up is when he is able to fall asleep. Until then, if we are in bed you can feel it shake a bit!

    Since he is just not able to eat much solid food I make him three shakes per day of one bottle Ensure, one packet of Instant Breakfast, extra protein powder, an egg and ice cream. The only other thing he has been able to tolerate is some soup. My homemade veggie beef and homemade chicken noodle from a friend at church. Actually, I wonder if he mostly drinks the broth and a little bit of very broken down veggies or noodles.

    So, John has a blood count scheduled for tomorrow afternoon. Depending upon the outcome he may need four days of injections to "up" the white count and then another blood count on Monday just before we leave for our trip out to San Diego.

    Our trip to St. Louis (for our son's medical issues) did not turn out well and it seems we are back at square one after 11 months. I am taking all medical notes and two discs of x-rays, CT scans and MRI's out to SoCal with me. I have a friend who might be able to help in locating a doctor or institution who might help my son.

    Life is precious but frustrating for us at this time. God loves us though and our precious church family has just taken us under their wing and shown love in so many ways. We are STILL blessed.



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