Wednesday, September 29th, 2010
Dad and I went in to the liver clinic to see if I needed my abdomen tapped, which I did, and they got out another 3.3 liters. My dad & I FINALLY brought the wheelchair and pillows along with the foot rests. I also received some Kayexalate for my elevated potassium level from Monday's labs. That's a thick brown liquid medication that I've given multiple times to patients. It smells like butterscotch, but to me, it tastes like grainy bananas. My level was 5.7 which was slightly elevated, but none the less, your labs have to be within certain parameters otherwise it can wreck havoc on your body if they're too high or low. My abdomen has really been sore where the liver meets the ribs after leaving the liver clinic which makes me short of breath again. I've been supporting the area with a pillow and the heat makes it feel better too. Dad has been missing his workouts but he's getting it when he takes me to my appts. pushing me up the ramps and getting my wheelchair in & out of the car. When we got home, I was able to eat a sandwich and dad had picked up some Greek vanilla yogurt, I believe it's called Chobani, which has twice the protein of regular yogurt. Our sister-in-law-recommended it, it's pretty tasty. I took a Tramadol and rested. My appetite usually gets better after I get drained, which is a good thing. Tuesday I couldn't eat much.
I'm still dealing with my hemorrhoid, the lactulose is making it a little easier to move my bowels, it's the passing part that hurts and not to gross you out, still bleeds occassionally. Unscented baby wipes with aloe, Tucks, gloves, and I put a liner in my panties to avoid any potential messes are my new regimen. If I'm not having pain from my back or liver, it's in my butt. So if you call me and I'm sleeping feel free to talk to anyone in my family for an update. Again, I'm not sleeping too well at night and if I can catch some shut eye during the day, please understand if I can't talk or have long conversations. I do love hearing from you though, especially on good days, I catch up on some phone calls. Your words of encouragement comfort me and just knowing you're thinking of me or just listening to my woes, I'm grateful for.
Thursday September 30th, 2010
I called my nurse practitioner about the Kayexalate. She told me not to take anymore, UIC's "high" level is 5.5 and the dose I took the night before, plus the Lasix I'm on would bring it back down. She recommended that I come in on Friday to check the lab to make sure we're on the right track.
I've been working on my latch hook rug, it really takes my mind off the discomfort and it gives my arms and hands a workout. I have to follow a complicated pattern too which I hope is stimulating my mind to some degree. I really got scared the last time the peripheral neuropathy hit me and I couldn't control my arms after my 2nd dose of Eloxatin. I guess it makes me glad that I have control for now and that's reassuring after not being in control of other parts of my body.
Jenny came home from work and helped me again with a good shower. It really makes me feel better and wipes me out, it's a big exercise for me. Seeing the mass of hair clumps in the garbage doesn't help, hopefully I'll still have some hair by the time of the party. She did a great job at getting my big tangles out without cutting my hair. Lots of conditioner, a comb with big teeth and patience. Any suggestions on how to wear hair so it DOESN'T get all gnarly? She also washes my back which feels great. Paul had come by during the week and out of the blue, he asked, "Do you want a spray tan? I'll pay for it?" I'm thinking it do not want to look orange like Snooki from Jersey Shore. Jenny asked if I can get my hair dyed, our neighbor wouldn't mind doing it and giving me a hair cut. It's been months since I last did anything to my hair.
We dined on spaghetti that night, Oh do I miss having that. I'm gentle on the sauce but then again, my sodium was low. It's good to have labs to justify my eating.
Friday October 1st, 2010
I woke with severe abdominal pain and was only able to take in an Ensure. I also took a Tramadol and then dad took me to get my labs rechecked in the oncology clinic. I took 2 pillows, one to sit on and a bigger one for my belly. He dropped me off @ the front door of the clinic so we didn't have to hassle with the wheelchair. I had my potassium level checked and Vera put more labs on, to check other things. It's a good thing she did. My potassium is actually within normal range but on the low side, but we found out that my uric acid level is high. She said it could be due to cell lysing = dying and that I have to flush out my system with fluids. We changed my meds yet again, hold the lactulose, start mineral oil, start Allopurinol and continue the lasix and tramadol. We were told that the pharmacist was going to bring us the meds. We waiting until 1:20pm. By then we were starving and my pain meds were making me sleepy but some abdominal discomfort was still there. Luckily I had been put in an exam room and dozed on the exam table. Finally I got up and went to pharmacy, it was sitting there and I was a bit peeved. Vera was surprised to see me still there and expedited me, she also gave me a copy of my labs.
I know dad was hungry and I treated him to I-Hop. I ate some pancakes with strawberries, bananas and whipped cream on top, most of an egg and I deserved to eat some hash browns with ketchup. Since I was told that I should push some liquids I drank some orange juice and milk. I was extremely thirsty and the water I was taking in wasn't enough. Dad ate a good portion of his omelete and pancakes too. By now I was really tired, my stomach still ached even though I had my pillow resting on it in the restaurant and I was feeling woosy. The barometric pressure outside I know was going to change and the Tramadol sometimes makes me woosy too.
We then hit Walgreens for a heating pad, the mineral oil, I need a dose of gossip magazines, and I found some pudding. I was very upset when I had my vitals taken @ the clinic, my weight had gone down to 126 lbs. Again I started crying. Vera had reminded me that I had gotten drained and that was about 4 lbs. Any tips of foods to put weight on? Please share. I'd eat more if I didn't get full of fluid @ times and short of breath or if this pain wasn't in my abdominal region. Then again, I'm on meds that make me urinate like a racehorse and I get tapped, I'm also losing fluid. It's hard trying to balance everything. Now I have to watch my glucose which has been slightly elevated since this whole cancer thing started. I was told to finish off all my Ensures, then I'll be switched to Glucerna. I hope it tastes the same as Ensure, believe it or not, I actually like the taste of Ensure. While we were in Walgreens, I had to hang on to the cart for support. It was good seeing Cathy and her coworkers, but my woosiness was exaggerated by all the people moving around and my pain was bad so I was hunched over the cart. Boy aren't I a pretty site for sore eyes. I had pushed the cart outside while dad got the car. I'm so glad he's in better shape than I. He's doing all the lifting. I thank him for all he does for me.
We got home, I'm glad David was here to help him. David helped me take my Allopurinol, it's a big pill and he helped split it and I drank more water. Also I can't get into my meds half the time, they're pretty much "Jessie-proof". Either I'm that weak, I have trouble opening water bottles too, but even @ work I'd have a hard time opening certain medicine containers. Dad suggested that I condense my meds, since they keep changing all the time to just keeping the current ones out & hiding the others especially since we have people coming over all the time. It'll be simpler too in case I have to go to a hospital again and carry only 3 meds instead of 10 plus = less confusing. After doing that, I pretty much passed out on the couch for 3 hours. I missed Marie's volleyball game which I heard they won, it was close, a real nail-biter. I woke around 7:30 pm. We had pot pies for dinner and I ate a pudding. I pulled out my heating pad and it has a nice affect on my back, it took away my pain and I passed out again until 1am. Now here I'm up with all the other insomniacs. I've eaten a small bagel with cream cheese and had more yogurt with liquids. I also took another Tramadol. I've been sitting in the recliner, while blogging, leaning forward to get some of the pressure off my back which I had been putting on it all day by sleeping. Thanks to my family who help me with the simple things, every day.
I'll see if I can get some shut eye. Thanks for putting up with me not blogging every day. If anything should happen to me, I'm sure my family would find a way to let you all know. I know people get concerned when I don't write, I'm sorry for scaring you. I don't mean to, I just have my good and bad days. If you hear from me, please pass the word on that I'm still hanging in there. I wish there was a cascade network to let you all know how I'm doing. Take care. :o)