The pain in my mouth has gotten significantly worse over the last few days. I've been taking the Oxycodone I was prescribed on and off since the weekend and that has been saving me. Without it my pain level is about a seven today, so I have a feeling I'm going to have to take it more regularly. The Oxy I have only lasts four hours but I found out there's an extended-release. So tomorrow at my weekly doctor check-up I'm going to discuss my pain and see if he can write me a prescription for that. I really don't want to be on this strong a pain medication for what will be around thirty days but I don't know how I'll be able to cope without it. Too bad they can't just put me in a coma until this is all over. I know that wouldn't be ideal for many reasons, it would just make this a whole lot easier to endure.
I've changed my feeding intervals from 6, 8 ounce feedings to 3, 16 ounce feedings. It's a lot more convenient and my stomach has been able to tolerate it fine. That makes my daily calorie intake over 2100 and as a result my weight has been holding steady just over 150. Also, the rash around my g-tube is clearing up and the discomfort of it has decreased which, of course, is good.
I'm also working out the kinks in my feeding routine. I've been trying to feed after I get ready for work. Yesterday that was somewhat disastrous because when I'm hungry my stomach pulls on my tube which causes stress on the hole in my abdomen which cause pain and discomfort. Add to that the tube cap kept popping open leaking stomach juice on my clothes and floor. Wonderful, isn't it. So today when I woke up I fed myself right away, then took a shower, then got dressed. That stopped the tube pulling first, allowed me to clean up and properly secure my tube and then get dressed without any leakage occurring. That worked out a lot better.
Lunch is no problem, I just need to do it around 1:00 PM to give me enough time to last me to dinner. I try to do dinner as late as possible, around 8:00 PM so that it lasts me most of the night so my little stomach demon (That's what I call the tube pulling, because it's like a little demon in my stomach yanking the tube.) doesn't wake me up at 4:00 AM. If all goes well I'll keep my little stomach demon happy and he'll leave me alone.
I'm still trying to get switched from bolus syringes to gravity bags but I've been getting stonewalled by my primary care doctor's office and the supplier. They're saying I need to come in for a visit. WTF for? I asked in not exactly those words. Because they need a paper trail, they said. Why didn't I need to come in for the syringes they ordered them a couple weeks ago. No answer. What are they going to do at the "office visit" that they can't do over the phone? Nothing. So they want me to come in just to tell them I want to be switched to bags because the syringes are a PITA and when I go back into chemo this week and they want me to drink 3 liters of water I'll have to refill my syringe 50 times to get there! Seriously!? Whatever. I scheduled an appointment for Feb. 7th. That was the earliest I could get in there. I also asked if she could just submit it to my insurance to see if they would approve it. She said she would. After I got off the phone with her I just found them online and ordered them myself. Hopefully I'll get them before the weekend. Tomorrow I'll just have to do my best to get all that water in me.
This Thursday is my half-way point. I'm so looking forward to this weekend because it's been my goal to keep working up to that point. If I can still work past that point that will be icing on the cake, but next week is going to be rough. The five days following chemo are the roughest, so we'll have to see how I do. After Monday I have 3 more weeks of radiation ending with 1 more treatment of chemo. Once I make it through all that then there will be a good couple weeks of initial recovery. So, hopefully around March 1st I'll start coming out of the woods. Breaking it down like this really helps me. Just need to make it to this weekend!
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