Saturday September 11 th, 2010
Today was a day to remember those who perished during those attacks on that fateful day 9 years ago. Life does go on...as tough as it is.
In the early afternoon, Paul and I attended a party to celebrate the one year birthday of our friends, Joe and Michelle's daughter. It was at a park in Glenview. The sun came out and the weather warmed up. They had TONS of good food and drinks, & some special "cranberry juice" for those thirsty adults. I probably could've taken a little nip of it but I think my liver is going through enough already. Several activities were going on outside & the kids were all on the many jungle gyms. Gabe, Lisa, Selena, Paul and I were reminiscing how everything is wood chipped with soft & spongy mats now instead of hard concrete and the jungle gyms themselves are so fancy compared to what we grew up with. Even the pinatas are safer with the pull strings instead of blindfolded little kids swinging heavy objects almost hitting the poor adult who gets stuck holding the rope. It was fun watching Selena's kids having a good time, heck all the kids running around, some sharing the slides, some hogging the slides, some pushing each other down the slides. Was that supposed to happen? Just being in nature, fresh air, listening to the laughter, sharing these special moments with friends is what I'm cherishing. Heck, 10 years ago we were hanging out in the smoke filled bars til the cows came home. Gabe said the other day, "Now we are the cows." Now were older, putzing around the park and falling asleep by 10 pm. :o)
Paul and I left around 6pm to get to another gathering. My VA family planned a bbq @ one of our coworker's home in Addison. We said our "good-byes" & went to pick up some fried chicken. Paul also had some baklava from a bakery and we headed on our way. We got there around 7:30 pm. Just in time. My coworkers had bought balloons and we wrote messages to Preston on them. We gathered on Gene's deck and Tom said some kind words for him. We said the "Our Father" and released them. The balloons went straight over Gene's house. There was more good food and my coworkers were dancing in group formations. B-woo brought her dog Onyx. Onyx is a well behaved dog, mine would've probably run off because they'd be scared and drown in the nearby pond. It was so good to see my coworker's families too. They brought their significant others & children. Unfortunately, this darn chemo makes me intolerant to the cold and my fingers were painfully tingling once the cool weather kicked in. I had my shawl but it wasn't enough. I sat inside while watching my coworkers danced outside. Gene and Lita, you have a gorgeous home and orchids. Can I stay over? :o) Thank you too for the Ube cake, it's very pretty and tasty. They were well prepared for people to take leftovers, how do you say it in Tagalog? Bah-on (spelling?) We have a saying for Filipino gatherings, BYOF, "bring your own foil". Everyone brought some goodies home. It was getting late, I believe some coworkers continued to party and went to the boats. What troopers. Thank you all for a wonderful gathering.
Paul got us home after 11pm, boy were we tired. I waited up until Jenny went to get Marie, it was her homecoming dance. I usually worked evenings and would only get to see pictures of Marie, this time I was able to see her in all her glory. She looked very pretty.
Sunday September 12 th, 2010
The bodyaches that chemo gives me started kicking in during Saturday. I had opened my big mouth to Paul saying, "You know the back pain I get hasn't bothered me, maybe I'm in the clear." WRONG! It started while we were @ the park and gradually got worse as Saturday progressed. By night, my back was very achey. Again, this pain feels like you worked out for a week and the soreness kicks in anytime you move. However, I was able to sleep on my sides again. I was a bad girl and didn't take any Lasix on Sat. I didn't want to be enroute between the suburbs if it kicked in and also my blood pressure was very low that day, I didn't want to "bottom out" anywhere. If I did @ Gene's, at least I would've been surrounded by nurses. :o)
I had missed mass, I woke up around 10 am after a night of restlessness, 4 am bathroom runs and insomnia, which I read for a couple of hours til I dozed off again. Dad had attended mass and blessed us upon his return. He had found a card that was left on our steps by some neighbors. They had only recently found out about my condition. Judy had come by with her daughters, and with bagels and cream cheese. It's been a while since Emelia came, she had been sick. We made plans with our sister, Cathy, on Tues,. to clean up my place. I'm hoping to get the areas by my vents cleaned so I can get them professionally done, it's been more than 5 years and I hope my furnace will work better this year once it's done.
Judy had gone home, her little ones were falling asleep. In a few hours, our friend, Suzanne came by for a visit with her twin girls. They were visiting from Green Bay. The neighbors 2 kids came by as well. Paul came by and grilled some hotdogs for lunch. Suzanne had brought a few flavors of cheese from Wisconsin. The Fontina is VERY good. We snacked on the cheese, crackers and apples. Her girls were shy at first but then started to open up. My back was still hurting but Suzanne understood when I had to get to my recliner and pillows. She worked on the girls' princess-themed birthday invites while we socialized. They're 4th birthday is in October. It's funny, Suzanne says she has "Mommy brain" and I have my "chemo brain" so if we had attention deficits, we were like, "that's alright". My family watched and hooped an hollered during the BEARS game. They had worn their Bears jerseys. I made sure I got pics of my family with Suzanne and the girls who were going back to Green Bay, Suz is still a Bears fan, hee, hee.
They left around 3pm and made it home quickly. Suzanne was able to unpack and settle them in for the night by the time we talked later.
I ended up taking my Lasix and boy did it work. I hadn't taken it earlier in the day because my pressure was low and I was already feeling dizzy. I had a pretty good appetite all day today and I felt stronger by the afternoon, that's when I took it. I ended up watching a mixture of the VMA's with the Kardashians and fell asleep around 10 pm. However, it's now 4am and I've been up since about 2 am. It started with a bathroom call, I read 2 gossip magazines, still couldn't sleep, snacked on an apple and cheese, rinsing it down with water and have been blogging ever since. I've been having stomach pains all day too. I am passing things, just wish it wasn't so discomforting. Now I'm wondering if my stomach wants another snack. It's hard to tell. The usual sensations I used to have for 40 years of hunger, or if my bladder or bowels need emptying has changed. I don't know if it's because of the chemo affects of those nerves or just the pressure from the tumor pushing on my insides. I wish we had those Star Trek scanners so I can figure out what's going on inside. I'm also waiting for my cold intolerance to go away. I'm craving ice cream and milk. Paul made these Nestle Tollhouse chocolate chips cookies and Marie was dunking it in cold milk in front of me. Then later Jenny and Marie were eating ice cream cones in front of me. I'm very tempted to get some. I'll wait another day or two before I try.
I have to try and get some sleep. I have an appt. later today with the surgeons in charge of that robotic knife to see if I'm a candidate for debulking or some radical surgery that will hopefully make me cancer free like the lady, Susan, who had her procedure done @ UIC and is lucky to be back on her feet. I still have major paperwork to complete, so I have to make calls to make sure that gets done too, JUST IN CASE, if anything should happen to me. I'll try to say "goodnight" for now, but after I get another little snack.
Dad and I did meet with the surgeons @ UIC. He and his team reviewed all that I had done so far. He told us that debulking could be done on my left liver lobe. I heard the words, "HOPE". I know there's a lot of risks involved with surgery, any surgery, or anytime one gets in their car, on a plane or leaves their house. If this can cause me relief to some degree, release the pressure this mass is causing on my insides, I can fight what cancer remains in my right lobe.. One less cancer filled lobe to deal with. He even mentioned that we can deal with the nodules with radio-frequency therapy, and other methods. Yes a lot of "bad" can happen but I would like for everyone to think of what GOOD could come of this. I know we didn't plan on what happened with our brother, John. No one saw that coming. He also suggested that he could place a shunt to help deal with my ascites so I wouldn't have to get my abdomen drained every 2-3 weeks. I'd have to be cleared that my cancer hasn't spread first and get a few more tests, ie. EKG, chest X-ray. I'd rather try something than just sit in the recliner wilting away from the chemo and dealing with this recurrent ascites. This news is already causing a stir in my family and not everyone knows about it yet. Yes 3 other surgeons said that I wouldn't be a candidate but this one has experience and if he would've come in the room and said right away, "no", then that'd be the end of my surgery pursuit. I was told that they only take this risk if there's a possibility of a cure. I told them about Susan, who they took that chance and she's been cancer free, Thank goodness, for 2 years. If anything bad happens, you can all say, "I TOLD YOU SO!", but if good comes from this, you'll have me to pester you for the next couple of months/years. Please be brave for me and support me. I am leaning towards this surgery, now I really have to get my paperwork in order, JUST IN CASE. Don't worry, I plan on being there on the 10th,so let's really have a good time then. I'll try to schedule things after that.
As you can see, it's about 2:30 am on Tues. I'm going to try and get some sleep. My Lasix pill didn't work so much last night and my belly is big. Darn! I might have to schedule another paracentesis instead of my dental appt. this week. If it's really bad, I might have to go back sooner. You sure you don't want to switch places with me? Love you all.
Monday, September 13, 2010
Friday, September 10, 2010
Happy day/Sad day
Thursday September 9th, 2010
Today was a day where I was a little productive. Dad had taken me to see my cats. Oh, either I got weak or they got bigger, but I lifted them up to take pictures and boy were they heavy. They were purring and biting me but I didn't care. Just to see their cute faces and feel their purrs made my day. I went to get warmer clothes like warmer socks, cardigans, etc., and some more things that'll be used @ dad's rather than just sitting @ my house, ie. envelopes, tape. We made a stop @ Walgreens to get some other groceries and pictures that I had made for Preston's family and coworkers.
It's also Gabe's birthday today. He called & was already out with his buddies. Lisa was going to join them and hopefully we'd hook up later. They came by dad's around 8pm. He had wanted to go to a bar in the neighborhood but he was already a bit tired @ this point, Lisa and I agreed, & he ended up falling asleep on the couch in an Irish Yoga position. That's fine with me. Jenny was out and brought home a French Silk pie. We woke him to sing "Happy Birthday" twice with the "Cha-Cha-Cha" version. I gave him his present, he told me that I didn't have to, I told them that I want to stilll celebrate birthdays while I'm here. I tried not crying but tears came to my eyes. Those @ the table distracted me enough to dry my eyes and we were able to dig into the nice, chocolately, sugary treat. Yum.
Friday September 10th, 2010
Dad dropped me off @ the VA a little after 8 am. Kerry came and picked me up, per wheelchair, from the Ogden entrance. Just seeing the familiar faces that I hadn't seen in almost 3 months, I had "Happy tears". He wheeled me back to the ER where I swear it shrunk. Do you ever go back to a place you hadn't been in a while and everything looks smaller? I don't know any of the new residents, but the nurses, attending and clerk were the same. We were actually gathering to car pool for Preston's wake which would take place in St. Charles @ 10 am. I've been told that the mood in the ER seems different since my diagnosis and now with the sudden loss of a great coworker. Preston always lived life to it's fullest, I hope they carry on that tradition. Bringing smiles everyday, helping each other get through the rough times, sharing knowledge, love and good food.
I rode with Paulette and Gloria in Paulette's "Mocha Frappacino" van (that's the color). We had directions and a GPS. It was a pretty trek out there but we made it. How Preston drove in to work that distance is beyond me. I guess if you love your job, you'd do anything for it. It was nice to meet his family, which we were all so familiar with since Preston told us so many stories about them. To hear the stories from his family and loved ones, most I've heard straight from Preston's mouth. Then the ones of how caring he was, which I knew of what I've experienced, but to hear how he touched so many others's lives, it's amazing. He did so much for so many, he was tight with whomever he met. He's a great example of how to live life and how to treat your loved ones. His family was sweet and made a CD of his favorite driving songs for us to have. We ended up listening to it on the way home. They also had a DVD of his life from birth to his navy days and his family and friends along the way. We didn't know he was also in the army and he was a fireman. His wife presented me with something that Preston was working on, he was helping gather funds for me, thank you, my cherished coworkers, that's very sweet of you. You do so much for me already.
The reception was @ a tea room that his wife, Lynda, knew the owners. We travelled to Oswego, got lost in corn fields but we did find the little gravel road that took us to Emerson's pottery store. Us "city folk" were in awe of the beautiful blue sky, white clouds, corn fields, fresh air, gazebos, they way they set up one of the buildings as a chapel for an upcoming wedding, and the doggy, Wiggles, that came to greet everybody. The food was great, ham, chicken sandwiches, salad, their soups, freshly squeezed strawberry lemonade, desserts, etc.. all the food was pretty tasty. Preston would've been proud to see everyone he loved, gathering together, to celebrate his life, listen to good music and eating good food. A man after my own stomach. I wish we would've taken him up on his offers to come out there when we could have.
On the way home, boy was I tired. We got back to dad's around 7:15 pm with traffic. Paulette and Gloria, Thank You for making sure I was taken care of on such a long day. I hadn't taken my Lasix until I got home, I didn't want to be stuck in traffic with it on board and it's a good thing I waited, it finally had me going like a racehorse. I also had waited to take my Decadron when we had a real meal in Oswego. The muffins and juice helped me through the ceremony. You made sure I was comfortable, I'm glad you ignored my, "I'm okays". It's still hard to let people take care of you but God do I appreciate it. Since this cancer journey started, the outpouring of love is so much. How does one thank everyone for the words of encouragement, their actions, ie. pushing me in wheelchairs, making sure my pillow for my back is in the right place, helping me when I'm weak or swollen, your smiles, hugs and kisses, people going out of their way to do something for you, everyday actions like taking me to appts., cooking and helping with the laundry, and my bills, sending pictures, making me laugh, you give me a shoulder to cry on, or a hand to hold? YOU ARE ALL SPECIAL AND DON'T YOU FORGET IT!
Today was a day where I was a little productive. Dad had taken me to see my cats. Oh, either I got weak or they got bigger, but I lifted them up to take pictures and boy were they heavy. They were purring and biting me but I didn't care. Just to see their cute faces and feel their purrs made my day. I went to get warmer clothes like warmer socks, cardigans, etc., and some more things that'll be used @ dad's rather than just sitting @ my house, ie. envelopes, tape. We made a stop @ Walgreens to get some other groceries and pictures that I had made for Preston's family and coworkers.
It's also Gabe's birthday today. He called & was already out with his buddies. Lisa was going to join them and hopefully we'd hook up later. They came by dad's around 8pm. He had wanted to go to a bar in the neighborhood but he was already a bit tired @ this point, Lisa and I agreed, & he ended up falling asleep on the couch in an Irish Yoga position. That's fine with me. Jenny was out and brought home a French Silk pie. We woke him to sing "Happy Birthday" twice with the "Cha-Cha-Cha" version. I gave him his present, he told me that I didn't have to, I told them that I want to stilll celebrate birthdays while I'm here. I tried not crying but tears came to my eyes. Those @ the table distracted me enough to dry my eyes and we were able to dig into the nice, chocolately, sugary treat. Yum.
Friday September 10th, 2010
Dad dropped me off @ the VA a little after 8 am. Kerry came and picked me up, per wheelchair, from the Ogden entrance. Just seeing the familiar faces that I hadn't seen in almost 3 months, I had "Happy tears". He wheeled me back to the ER where I swear it shrunk. Do you ever go back to a place you hadn't been in a while and everything looks smaller? I don't know any of the new residents, but the nurses, attending and clerk were the same. We were actually gathering to car pool for Preston's wake which would take place in St. Charles @ 10 am. I've been told that the mood in the ER seems different since my diagnosis and now with the sudden loss of a great coworker. Preston always lived life to it's fullest, I hope they carry on that tradition. Bringing smiles everyday, helping each other get through the rough times, sharing knowledge, love and good food.
I rode with Paulette and Gloria in Paulette's "Mocha Frappacino" van (that's the color). We had directions and a GPS. It was a pretty trek out there but we made it. How Preston drove in to work that distance is beyond me. I guess if you love your job, you'd do anything for it. It was nice to meet his family, which we were all so familiar with since Preston told us so many stories about them. To hear the stories from his family and loved ones, most I've heard straight from Preston's mouth. Then the ones of how caring he was, which I knew of what I've experienced, but to hear how he touched so many others's lives, it's amazing. He did so much for so many, he was tight with whomever he met. He's a great example of how to live life and how to treat your loved ones. His family was sweet and made a CD of his favorite driving songs for us to have. We ended up listening to it on the way home. They also had a DVD of his life from birth to his navy days and his family and friends along the way. We didn't know he was also in the army and he was a fireman. His wife presented me with something that Preston was working on, he was helping gather funds for me, thank you, my cherished coworkers, that's very sweet of you. You do so much for me already.
The reception was @ a tea room that his wife, Lynda, knew the owners. We travelled to Oswego, got lost in corn fields but we did find the little gravel road that took us to Emerson's pottery store. Us "city folk" were in awe of the beautiful blue sky, white clouds, corn fields, fresh air, gazebos, they way they set up one of the buildings as a chapel for an upcoming wedding, and the doggy, Wiggles, that came to greet everybody. The food was great, ham, chicken sandwiches, salad, their soups, freshly squeezed strawberry lemonade, desserts, etc.. all the food was pretty tasty. Preston would've been proud to see everyone he loved, gathering together, to celebrate his life, listen to good music and eating good food. A man after my own stomach. I wish we would've taken him up on his offers to come out there when we could have.
On the way home, boy was I tired. We got back to dad's around 7:15 pm with traffic. Paulette and Gloria, Thank You for making sure I was taken care of on such a long day. I hadn't taken my Lasix until I got home, I didn't want to be stuck in traffic with it on board and it's a good thing I waited, it finally had me going like a racehorse. I also had waited to take my Decadron when we had a real meal in Oswego. The muffins and juice helped me through the ceremony. You made sure I was comfortable, I'm glad you ignored my, "I'm okays". It's still hard to let people take care of you but God do I appreciate it. Since this cancer journey started, the outpouring of love is so much. How does one thank everyone for the words of encouragement, their actions, ie. pushing me in wheelchairs, making sure my pillow for my back is in the right place, helping me when I'm weak or swollen, your smiles, hugs and kisses, people going out of their way to do something for you, everyday actions like taking me to appts., cooking and helping with the laundry, and my bills, sending pictures, making me laugh, you give me a shoulder to cry on, or a hand to hold? YOU ARE ALL SPECIAL AND DON'T YOU FORGET IT!
Wednesday, September 8, 2010
Gloves for the fridge
Wednesday September 8th, 2010
Woke up only once this am @ 4:30 am and had a hard time sleeping after that but I was able to sleep on both of my sides during the night so it was a pretty decent sleep, finally. No more sweating after I wiped off with aloe vera wipes last night. I nibbled on water and half a peach. ANY tartness still gets my jowls, woo-wie! I also noticed that my hands are a little jittery, again, I'm assuming it could be due to the neuropathy. I hope it goes away. I feel like I'm going through DT's. My legs felt a little heavy but that happens when I receive chemo. I'll have to mention this to Vera when I see her again. I had to start wearing my gloves to go into the fridge. I won't even attempt to drink or eat anything cold. Thanks Eloxatin. I'll be a glove-wearing, jittery turtle when my coworkers see me this weekend. With this weather change, I'm wondering if that's affecting my vertigo too. I felt a little off kilter when I finally got up around 8 am. Anyone want to trade places with me?
I had received some terrible news today around 10 am. I was on Facebook with an Officer @ work, he instant messaged me if I was sitting down. Then he informed me that "Press" had passed away last night. Then we got cut off. I called the ER right away and our clerk informed me that our Preston, in the ER, passed. There are other Prestons in the hospital. I couldn't believe it and repeated, "NO!" How could it be? He was always so active, surfing, playing tennis, taking his dog on long walks, fishing, he lost weight, quit smoking and he was recently planning another trip with 2 other buddies. He's always a friendly person, hard-working, telling jokes and navy stories, very helpful, he loved sharing the food and desserts he and his wife would make. He'd bring in his tortilla maker and we'd have quesadillas or his crockpot & have a multitude of other good food. He's just one of the people you look forward to seeing. I was crying since then and calling other coworkers. I felt I had more against me than he did. One coworker told me that now I have another angel over me. Our boss, Gloria, called to check on me to see how I was handling the news. Some coworkers were concerned how I'd take it, I told them that I'd rather know than not know about Preston. I was told he wore anti-cancer shirts almost every day. He gave me one before I left, it said, "Friends don't let friends fight cancer alone." I'll cherish that shirt even more now.
I was going to take my Lasix around noon but when I checked my vitals, the BP was low 101/64 but my heart rate was 131. The skin turgor on the back of my hands were a bit slow to snap back. I had perspired so much yesterday and cried since I recieved the sad news. Vera called and recommended that I take Aldactone in the evening instead of the 20 of lasix. It doesn't zap one's potassium as much as the lasix. So now I'll be on 2 water pills. I told her about my vitals and my water loss yesterday & today. I'll verify all the med doses in the am and recheck my vitals. She sent the new prescription to Walgreens. Cathy called and informed us that we could bring back the broken shower chair & that they's exchange it. So I got my new med and chair. I was able to bathe myself without any neuropathy pain or numbness.
To battle my neuropathy, I attempted to work on my latch hook rug. At first it was awkward but my hands got more control after a while. After dinner, our friend, Ann, came by and massaged my back & arms, then applied another technique, raikie (spelling?), to my back. I'd feel the warmth from her hands, then she applied it to my liver area, then scooped it away @ the end. I hope it works. I did feel better. She had also brought some croissants from a bakery near her apt. I took the only chocolate one and tried to hide it. Jenny made her own chocolate ones by warming it up with Hershey bars inside. It oozed out onto the dining room table & if you know dad, it's a peeve of his, she cleaned it ASAP. I couldn't hold out after hearing her chocolate croissant story and ate mine after warming it up. Thanks Ann for everything.
I pray for my good friend, Preston, may he rest in peace. May his contagious laughter, smile and zest for life and love of his family, friends, coworkers and nursing always be remembered. We all miss you, you're a great man.
Woke up only once this am @ 4:30 am and had a hard time sleeping after that but I was able to sleep on both of my sides during the night so it was a pretty decent sleep, finally. No more sweating after I wiped off with aloe vera wipes last night. I nibbled on water and half a peach. ANY tartness still gets my jowls, woo-wie! I also noticed that my hands are a little jittery, again, I'm assuming it could be due to the neuropathy. I hope it goes away. I feel like I'm going through DT's. My legs felt a little heavy but that happens when I receive chemo. I'll have to mention this to Vera when I see her again. I had to start wearing my gloves to go into the fridge. I won't even attempt to drink or eat anything cold. Thanks Eloxatin. I'll be a glove-wearing, jittery turtle when my coworkers see me this weekend. With this weather change, I'm wondering if that's affecting my vertigo too. I felt a little off kilter when I finally got up around 8 am. Anyone want to trade places with me?
I had received some terrible news today around 10 am. I was on Facebook with an Officer @ work, he instant messaged me if I was sitting down. Then he informed me that "Press" had passed away last night. Then we got cut off. I called the ER right away and our clerk informed me that our Preston, in the ER, passed. There are other Prestons in the hospital. I couldn't believe it and repeated, "NO!" How could it be? He was always so active, surfing, playing tennis, taking his dog on long walks, fishing, he lost weight, quit smoking and he was recently planning another trip with 2 other buddies. He's always a friendly person, hard-working, telling jokes and navy stories, very helpful, he loved sharing the food and desserts he and his wife would make. He'd bring in his tortilla maker and we'd have quesadillas or his crockpot & have a multitude of other good food. He's just one of the people you look forward to seeing. I was crying since then and calling other coworkers. I felt I had more against me than he did. One coworker told me that now I have another angel over me. Our boss, Gloria, called to check on me to see how I was handling the news. Some coworkers were concerned how I'd take it, I told them that I'd rather know than not know about Preston. I was told he wore anti-cancer shirts almost every day. He gave me one before I left, it said, "Friends don't let friends fight cancer alone." I'll cherish that shirt even more now.
I was going to take my Lasix around noon but when I checked my vitals, the BP was low 101/64 but my heart rate was 131. The skin turgor on the back of my hands were a bit slow to snap back. I had perspired so much yesterday and cried since I recieved the sad news. Vera called and recommended that I take Aldactone in the evening instead of the 20 of lasix. It doesn't zap one's potassium as much as the lasix. So now I'll be on 2 water pills. I told her about my vitals and my water loss yesterday & today. I'll verify all the med doses in the am and recheck my vitals. She sent the new prescription to Walgreens. Cathy called and informed us that we could bring back the broken shower chair & that they's exchange it. So I got my new med and chair. I was able to bathe myself without any neuropathy pain or numbness.
To battle my neuropathy, I attempted to work on my latch hook rug. At first it was awkward but my hands got more control after a while. After dinner, our friend, Ann, came by and massaged my back & arms, then applied another technique, raikie (spelling?), to my back. I'd feel the warmth from her hands, then she applied it to my liver area, then scooped it away @ the end. I hope it works. I did feel better. She had also brought some croissants from a bakery near her apt. I took the only chocolate one and tried to hide it. Jenny made her own chocolate ones by warming it up with Hershey bars inside. It oozed out onto the dining room table & if you know dad, it's a peeve of his, she cleaned it ASAP. I couldn't hold out after hearing her chocolate croissant story and ate mine after warming it up. Thanks Ann for everything.
I pray for my good friend, Preston, may he rest in peace. May his contagious laughter, smile and zest for life and love of his family, friends, coworkers and nursing always be remembered. We all miss you, you're a great man.
Tuesday, September 7, 2010
Typing while I can
Tuesday September 7th, 2010
I had a pretty decent labor day. In addition to our family getting together, Odette and her parents came to visit. She had made a delicious blueberry banana glaze cake, it's been a while since we've seen each other. I had worn a dress that Cathy & I purchased from the Salvation Army store a few months ago. It was complimented on by Odette and her family, they wondered if it was a Guatamalan design. I'm not sure, but I know we got it for about $2.00. Then our brother's girlfriend's parents came to visit from Door County, Wisc. Later Jenny's friend, Patty, came by with her mom and Marie's aunt came by with her boyfriend. We babysat the neighbors 3 kids. It was good food, and nice to see everyone have fun playing the yard and video games. I just had severe back pain and rib pain most of the day and evening, my abdomen was swollen too. Even a back massage from Jenny only temporarily helped. I absorbed the laughter, dancing and the smiles from everyone to get me through my difficulty times.
After another restless night, I went for my chemo today. I had most of a banana and a cup of milk, for an early breakfast. While waiting for the meds @ UIC I had a piece of the cake that Odette made and the Ensure with Rivigor for muscles. Cathy found that they sell that specific Ensure @ Walgreens. I was given the pre-meds of Aloxi and Decadron for nausea. I had taken my Lasix too. I was going to receive both Gemzar and Eloxatin today. My dad and I were placed in a room with a bed. I tried to get comfortable on the bed and that nasty back pain came by with a vengence. Dad tried to massage my back but then my rib pain wanted attention too. Dr. Mehta came and gave me a hug, he thanked me for the picture I gave him. I told him how my abdomen was swollen and he recommended that I take an additional 20 mg of Lasix in the afternoon. Vera, my NP, reminded me to check my vitals before I do.I asked her about back massages, she said that I don't have metastasis (the spread of cancer to the bones) nor am I at risk for blood clots so it'd be alright. I really have to watch my potassium intake with the increased dose. I told Maria, my nurse, about the pain and she was able to get a dose of Tramadol, the pain meds I was hesitant to take but broke down and took one. I also moved from the bed to the chair with the pillow behind my back. Dad kept dozing, I told him that he could sleep in the bed, but he didn't.
The tramadol started to work and I was able to do 3 rows of my latch hook rug. I mentioned to dad about getting lunch but he reminded me about the leftovers we had @ home. I didn't realize that we'd be done around 3 pm. By this time I was feeling dizzy, hot & cold, sweaty, weak, & nauseated. My chemo finished & I got my meds for home from pharmacy. Dad guided me to the lobby. I believe the Gemzar fever was starting and that I was hungry. He went to get the car. I nibbled on the other piece of cake that dad only sampled. Wow, the tartness from the blueberries jolted my jaw. This happened the last time I received the Eloxatin, whenever I ate certain fruits. On the way home, I was still sweaty and now my arms felt numb. I assumed it was the beginning of the peripheral neuropathy that also comes with the Eloxatin. Traffic wasn't too bad, we got home rather quick & dad got me in the house. I laid down right away & he got me something to nibble on. I ate a minute bit, called Jenny that she may need to help me more because the neuropathy was affecting me, I wanted my hands to control the fork and knife better but they were slow and felt weak. I cried because I was still sweaty, dizzy and nauseated. David was home and came in the living room where I was lying in the couch. He stayed with me until I fell asleep for 3.5 hours.
I woke to have 2 chicken wings for dinner and pineapples slices. I felt better and rechecked my blood pressure before I took the other Lasix dose. The BP was 101/73, and HR = 104. I held off because of all my perspiring. My arm and hands also were still numb, slow & tingling. My abdomen and back didn't feel that bad. While I started blogging, I was feeling a little dizzy again, I'll have another Ensure before going to bed and water. As I'm blogging, I'm sweating again. Maybe the Gemzar isn't done with me yet. I hope I feel better tomorrow. Please pray that I get through this rough patch. I'll try and wipe down with some disposable wet cloths. I don't know if I'd survive in the shower tonight, since the shower stool legs are still off kilter. Have a good night, I hope I do, somehow.
I had a pretty decent labor day. In addition to our family getting together, Odette and her parents came to visit. She had made a delicious blueberry banana glaze cake, it's been a while since we've seen each other. I had worn a dress that Cathy & I purchased from the Salvation Army store a few months ago. It was complimented on by Odette and her family, they wondered if it was a Guatamalan design. I'm not sure, but I know we got it for about $2.00. Then our brother's girlfriend's parents came to visit from Door County, Wisc. Later Jenny's friend, Patty, came by with her mom and Marie's aunt came by with her boyfriend. We babysat the neighbors 3 kids. It was good food, and nice to see everyone have fun playing the yard and video games. I just had severe back pain and rib pain most of the day and evening, my abdomen was swollen too. Even a back massage from Jenny only temporarily helped. I absorbed the laughter, dancing and the smiles from everyone to get me through my difficulty times.
After another restless night, I went for my chemo today. I had most of a banana and a cup of milk, for an early breakfast. While waiting for the meds @ UIC I had a piece of the cake that Odette made and the Ensure with Rivigor for muscles. Cathy found that they sell that specific Ensure @ Walgreens. I was given the pre-meds of Aloxi and Decadron for nausea. I had taken my Lasix too. I was going to receive both Gemzar and Eloxatin today. My dad and I were placed in a room with a bed. I tried to get comfortable on the bed and that nasty back pain came by with a vengence. Dad tried to massage my back but then my rib pain wanted attention too. Dr. Mehta came and gave me a hug, he thanked me for the picture I gave him. I told him how my abdomen was swollen and he recommended that I take an additional 20 mg of Lasix in the afternoon. Vera, my NP, reminded me to check my vitals before I do.I asked her about back massages, she said that I don't have metastasis (the spread of cancer to the bones) nor am I at risk for blood clots so it'd be alright. I really have to watch my potassium intake with the increased dose. I told Maria, my nurse, about the pain and she was able to get a dose of Tramadol, the pain meds I was hesitant to take but broke down and took one. I also moved from the bed to the chair with the pillow behind my back. Dad kept dozing, I told him that he could sleep in the bed, but he didn't.
The tramadol started to work and I was able to do 3 rows of my latch hook rug. I mentioned to dad about getting lunch but he reminded me about the leftovers we had @ home. I didn't realize that we'd be done around 3 pm. By this time I was feeling dizzy, hot & cold, sweaty, weak, & nauseated. My chemo finished & I got my meds for home from pharmacy. Dad guided me to the lobby. I believe the Gemzar fever was starting and that I was hungry. He went to get the car. I nibbled on the other piece of cake that dad only sampled. Wow, the tartness from the blueberries jolted my jaw. This happened the last time I received the Eloxatin, whenever I ate certain fruits. On the way home, I was still sweaty and now my arms felt numb. I assumed it was the beginning of the peripheral neuropathy that also comes with the Eloxatin. Traffic wasn't too bad, we got home rather quick & dad got me in the house. I laid down right away & he got me something to nibble on. I ate a minute bit, called Jenny that she may need to help me more because the neuropathy was affecting me, I wanted my hands to control the fork and knife better but they were slow and felt weak. I cried because I was still sweaty, dizzy and nauseated. David was home and came in the living room where I was lying in the couch. He stayed with me until I fell asleep for 3.5 hours.
I woke to have 2 chicken wings for dinner and pineapples slices. I felt better and rechecked my blood pressure before I took the other Lasix dose. The BP was 101/73, and HR = 104. I held off because of all my perspiring. My arm and hands also were still numb, slow & tingling. My abdomen and back didn't feel that bad. While I started blogging, I was feeling a little dizzy again, I'll have another Ensure before going to bed and water. As I'm blogging, I'm sweating again. Maybe the Gemzar isn't done with me yet. I hope I feel better tomorrow. Please pray that I get through this rough patch. I'll try and wipe down with some disposable wet cloths. I don't know if I'd survive in the shower tonight, since the shower stool legs are still off kilter. Have a good night, I hope I do, somehow.
Sunday, September 5, 2010
Fresh air
Sunday September 5th, 2010
I'm gonna do a little backtracking. Friday, Coye stopped by for a visit. He was kind to go shopping for me & got 3 large photo albums. I did fill them up with the 900 plus pictures that I had finally gotten developed. I'm kind of like dad, it's sacrilage to keep the photos on the digital camera for too long. Back in the day, one couldn't have a roll of film undeveloped. Walgreens has stayed in business because of us. I also started my Lasix 40 mg tablet, which I'm not sure if it worked all that well, I don't recall "peeing like a race horse" but I did get some decent sleep Friday night = I was able to sleep on my sides.
I had worn the green caftan dress that our mom's cousin, Linda, had sent me. Perfect fit. I like it and the red one, they looked so fancy, I was hesitant to wear them. Dad likes them too. Very silky, so silky that I tried sleeping in it and I kept sliding down my bed. I have to sleep with 3-4 pillows in various arrangements to keep my head elevated and to support my back. Thank you Linda and family.
Later that evening, Bryan, a family friend and 2 of my coworkers stopped by. Paulette and Kathy were troopers. They drove for almost 2 hours, in Friday Labor Day weekend traffic using local lanes to get to my dad's from work. Now that's love. We had one of my favorites for dinner, stuffed pizza from Suparossa's. I only ate half a slice of sausage. Just torture me. Kathy had brought some yummy cookies from Ferrar's bakery on Taylor. Paulette and another coworker had given me a body pillow. I'm still working with the pillow when my liver cooperates. Sometimes my liver doesn't want me laying on my sides but if I'm tired enough, I wake up hugging it. Thanks girls.
Saturday was our day to hit the Taste of Polonia. I rested all day knowing it might be a long night, I was right. I also checked my vital signs, which I'm supposed to do before taking my Lasix. My blood pressure was 103/80 but my heart rate was 131 bpm. I was hesitant to take it, knowing my blood pressure could drop more and that I was dehydrated with my fast heart rate, I didn't want to make it worse. I paged Vera and she said that if I didn't take it today, to take it tomorrow. I'd feel better if I had more to work with vital signs-wise. I held off for today. It's a good thing that I did. When I had taken it on Friday, in the evening, I had felt a little lightheaded.
I had arrived with Jenny and Marie to the fest. We had driven and parked by the Jefferson Park terminal on Milwaukee. We walked over and by the time we got near the food tents, I was feeling woosy. No chairs were available, the ABBA tribute band was playing & it was packed. I went to get a spot @ a table. Jenny grabbed some pierogi's, cabbage rolls and potato pancakes from Kasia's deli. I felt better after eating and having water. BRRRR! It was cold too. I wore the sweat jacket that Paul had gotten me in Wisconsin with a lined hood & back. It wasn't enough to keep the cold out. I had even worn long pants and an undershirt & shirt. Our brothers, Paul and Chas and Chas's 2 kids joined us. Well, Rachel stopped by, she was checking out the sights with her friend. Chas kept taking Alex to play the carnie games, Alex won me a red bulldog which I named, Oksana.
As soon as the ABBA tribute band finished, we meandered over to find a chair and table closer to the stage. We found a spot, just in front of the port-a-potties. Not only that, people were smoking and passing really bad gas. They were eating Polish sausage and having beer. What a combo. Unfortunately, this is not the fresh air that Jenny and Paul were talking about for me to get since I've been in the house a lot since starting chemo.
Jenny's friend, Patty & her friend, Trish, joined us later. By then, Chas, had bought Alex and I black hoodie sweatshirts. I had both sweatjackets on with the hoods tied up, remember, I lost a lot of body fat. Jenny said I looked like a hooded killer kid from that movie called, "The Brood". We saw that movie when we were young, thanks to mom and the cheap theaters. The Led Zepplin tribute band, Kasmir, started playing around 9pm. I may have been a bump on a log after a while but Paul started playing air guitar during the set, so did several other people in the audience. Jenny went with me inside the Copernicus Center to use the bathroom. It was warm in the building, I wanted to stay there until the night was over, she insisted we go back out. I told her I get to blame them if I get sick. I found that they served hot tea @ the bar & got a cup. While waitingfor my tea she recognized some guy commenting on how slow the bartender was. She asked him, "Do I know you from Mondays?" He was like, "What?" Then he realized that they're both in the same Weight Watchers group. I got my tea and we headed out. We stopped to get a rootbeer float and a toasted waffle with toppings. We took a picture of the sign because they misspelled "milkshahs" and "carmel". We all couldn't believe that Kasmir DIDN'T, I repeat, DIDN'T play "Stairway to Heaven". The audience booed but with the city ordinance, the band had already played past their time.
As the fest closed, Chas walked me back to the car while the rest of the clan went to get ice cream and coffee from Dunkin Donuts in the Veteran's Square mall. I was pooped and my back was aching for the pillow in the car. It's funny, as our 6'4" brother walked me, I had to keep reminding him how slow I am, he reminded me how long his legs are. We dropped Chas off @ home then went back home. It was a fun night, I just wish my insides didn't hurt and that it wasn't so cold outside.
Again, Miss Insomnia couldn't sleep well. I finally dozed off for good @ 6 am. I woke up after 10 am. Jenny had made some decaf coffee. Paul had gone to a picnic with our cousin, Linda, yesterday before he joined us @ the Polonia fest. He had bought 6 coffee cakes, there's 4 sitting on our dining room table. Guess what I ate for breakfast. My vitals were better before I took my Lasix, both the blood pressure and heart rate. I worked on organizing my stuff in the living room, I know I'm throwing things out, condensing stuff but it seems to grow when I go back in there. GRRR!
My friend, Lisa, called, she asked if I wanted to go to Italy, India & Bali. I thought she didn't do so hot @ the boats with her mom yesterday. We made plans to see "Eat, Pray, Love" the Julia Roberts film. Lisa had read the book. She came and got me, and we dined @ Red Robin by Village Crossing. I stuck with the house salad, it's pretty big. She got the fried chicken sandwich. I had a taste of it, my goodness it was wonderful. Diet restrictions will do that to you. I also got the root beer float with free refills. They also offered her refills on her fries. I was good and held off on the fries. My belly was alrerady feeling kind of big. (Gas) We had time to kill before the movie. I bought, against my better judgement, another 1,000 piece puzzle, a book for my sister Cathy, and 2 funny books for me. One is "Dick and Jane and Vampires" and the other one is "Awkward Family Photos". The movie was beautiful, especially the food in Italy. Watching Julia slurp the spaghetti. Sigh. I miss eating the way I used to. The scenery was beautiful too. It's a good movie, I'd recommend it. However, I didn't realize that it was almost 2.5 hours long. I was restless with my back and kept squirming to get comfortable. My folded up sweat jacket would only work for so long in certain positions. I was happy when the movie ended so I could lay back in the car and rest my back. Lisa had dropped me off, it was good to see her again.
I wish I could go out and enjoy the time like I used to instead of being so restless, trying to cushion my back, massaging it when I can, walking slow, & huffing an puffing. I never know if my discomfort is an annoyance to those with me. At least if I know when I go out and eat, to order something small so I don't waste food or money. Well, gotta try and get some sleep. We'll be BBQing tomorrow. Enjoy your cookouts.
I'm gonna do a little backtracking. Friday, Coye stopped by for a visit. He was kind to go shopping for me & got 3 large photo albums. I did fill them up with the 900 plus pictures that I had finally gotten developed. I'm kind of like dad, it's sacrilage to keep the photos on the digital camera for too long. Back in the day, one couldn't have a roll of film undeveloped. Walgreens has stayed in business because of us. I also started my Lasix 40 mg tablet, which I'm not sure if it worked all that well, I don't recall "peeing like a race horse" but I did get some decent sleep Friday night = I was able to sleep on my sides.
I had worn the green caftan dress that our mom's cousin, Linda, had sent me. Perfect fit. I like it and the red one, they looked so fancy, I was hesitant to wear them. Dad likes them too. Very silky, so silky that I tried sleeping in it and I kept sliding down my bed. I have to sleep with 3-4 pillows in various arrangements to keep my head elevated and to support my back. Thank you Linda and family.
Later that evening, Bryan, a family friend and 2 of my coworkers stopped by. Paulette and Kathy were troopers. They drove for almost 2 hours, in Friday Labor Day weekend traffic using local lanes to get to my dad's from work. Now that's love. We had one of my favorites for dinner, stuffed pizza from Suparossa's. I only ate half a slice of sausage. Just torture me. Kathy had brought some yummy cookies from Ferrar's bakery on Taylor. Paulette and another coworker had given me a body pillow. I'm still working with the pillow when my liver cooperates. Sometimes my liver doesn't want me laying on my sides but if I'm tired enough, I wake up hugging it. Thanks girls.
Saturday was our day to hit the Taste of Polonia. I rested all day knowing it might be a long night, I was right. I also checked my vital signs, which I'm supposed to do before taking my Lasix. My blood pressure was 103/80 but my heart rate was 131 bpm. I was hesitant to take it, knowing my blood pressure could drop more and that I was dehydrated with my fast heart rate, I didn't want to make it worse. I paged Vera and she said that if I didn't take it today, to take it tomorrow. I'd feel better if I had more to work with vital signs-wise. I held off for today. It's a good thing that I did. When I had taken it on Friday, in the evening, I had felt a little lightheaded.
I had arrived with Jenny and Marie to the fest. We had driven and parked by the Jefferson Park terminal on Milwaukee. We walked over and by the time we got near the food tents, I was feeling woosy. No chairs were available, the ABBA tribute band was playing & it was packed. I went to get a spot @ a table. Jenny grabbed some pierogi's, cabbage rolls and potato pancakes from Kasia's deli. I felt better after eating and having water. BRRRR! It was cold too. I wore the sweat jacket that Paul had gotten me in Wisconsin with a lined hood & back. It wasn't enough to keep the cold out. I had even worn long pants and an undershirt & shirt. Our brothers, Paul and Chas and Chas's 2 kids joined us. Well, Rachel stopped by, she was checking out the sights with her friend. Chas kept taking Alex to play the carnie games, Alex won me a red bulldog which I named, Oksana.
As soon as the ABBA tribute band finished, we meandered over to find a chair and table closer to the stage. We found a spot, just in front of the port-a-potties. Not only that, people were smoking and passing really bad gas. They were eating Polish sausage and having beer. What a combo. Unfortunately, this is not the fresh air that Jenny and Paul were talking about for me to get since I've been in the house a lot since starting chemo.
Jenny's friend, Patty & her friend, Trish, joined us later. By then, Chas, had bought Alex and I black hoodie sweatshirts. I had both sweatjackets on with the hoods tied up, remember, I lost a lot of body fat. Jenny said I looked like a hooded killer kid from that movie called, "The Brood". We saw that movie when we were young, thanks to mom and the cheap theaters. The Led Zepplin tribute band, Kasmir, started playing around 9pm. I may have been a bump on a log after a while but Paul started playing air guitar during the set, so did several other people in the audience. Jenny went with me inside the Copernicus Center to use the bathroom. It was warm in the building, I wanted to stay there until the night was over, she insisted we go back out. I told her I get to blame them if I get sick. I found that they served hot tea @ the bar & got a cup. While waitingfor my tea she recognized some guy commenting on how slow the bartender was. She asked him, "Do I know you from Mondays?" He was like, "What?" Then he realized that they're both in the same Weight Watchers group. I got my tea and we headed out. We stopped to get a rootbeer float and a toasted waffle with toppings. We took a picture of the sign because they misspelled "milkshahs" and "carmel". We all couldn't believe that Kasmir DIDN'T, I repeat, DIDN'T play "Stairway to Heaven". The audience booed but with the city ordinance, the band had already played past their time.
As the fest closed, Chas walked me back to the car while the rest of the clan went to get ice cream and coffee from Dunkin Donuts in the Veteran's Square mall. I was pooped and my back was aching for the pillow in the car. It's funny, as our 6'4" brother walked me, I had to keep reminding him how slow I am, he reminded me how long his legs are. We dropped Chas off @ home then went back home. It was a fun night, I just wish my insides didn't hurt and that it wasn't so cold outside.
Again, Miss Insomnia couldn't sleep well. I finally dozed off for good @ 6 am. I woke up after 10 am. Jenny had made some decaf coffee. Paul had gone to a picnic with our cousin, Linda, yesterday before he joined us @ the Polonia fest. He had bought 6 coffee cakes, there's 4 sitting on our dining room table. Guess what I ate for breakfast. My vitals were better before I took my Lasix, both the blood pressure and heart rate. I worked on organizing my stuff in the living room, I know I'm throwing things out, condensing stuff but it seems to grow when I go back in there. GRRR!
My friend, Lisa, called, she asked if I wanted to go to Italy, India & Bali. I thought she didn't do so hot @ the boats with her mom yesterday. We made plans to see "Eat, Pray, Love" the Julia Roberts film. Lisa had read the book. She came and got me, and we dined @ Red Robin by Village Crossing. I stuck with the house salad, it's pretty big. She got the fried chicken sandwich. I had a taste of it, my goodness it was wonderful. Diet restrictions will do that to you. I also got the root beer float with free refills. They also offered her refills on her fries. I was good and held off on the fries. My belly was alrerady feeling kind of big. (Gas) We had time to kill before the movie. I bought, against my better judgement, another 1,000 piece puzzle, a book for my sister Cathy, and 2 funny books for me. One is "Dick and Jane and Vampires" and the other one is "Awkward Family Photos". The movie was beautiful, especially the food in Italy. Watching Julia slurp the spaghetti. Sigh. I miss eating the way I used to. The scenery was beautiful too. It's a good movie, I'd recommend it. However, I didn't realize that it was almost 2.5 hours long. I was restless with my back and kept squirming to get comfortable. My folded up sweat jacket would only work for so long in certain positions. I was happy when the movie ended so I could lay back in the car and rest my back. Lisa had dropped me off, it was good to see her again.
I wish I could go out and enjoy the time like I used to instead of being so restless, trying to cushion my back, massaging it when I can, walking slow, & huffing an puffing. I never know if my discomfort is an annoyance to those with me. At least if I know when I go out and eat, to order something small so I don't waste food or money. Well, gotta try and get some sleep. We'll be BBQing tomorrow. Enjoy your cookouts.
Thursday, September 2, 2010
Several pounds lighter
Thursday September 2nd, 2010
I'm sorry I wasn't able to blog yesterday. I was busy getting another 4.6 liters taken off of my abdomen. I could NOT sleep Tuesday night at all. I tried sleeping in the recliner and my body wasn't having it. I was swollen, but not as large as I was before my first paracentesis. When the liver clinic @ UIC opened, I called Diane, the nurse in Dr. Lam's office. She was able to get me in as an add on. YEAH! Sorry Mr. Widdo Poopie, since your mouth is in better shape than my belly & breathing, I have priority today & your follow up appt. can wait. Jenny's calling him "Veruca" now because he's a high-maintenance dog.
I told dad about my situation when he got back from working out. Yes dad is 79 y/o and he still works out about 3 times a week since his heart attack a few years ago and he still works, as needed @ UIC and does 12 hours shifts so I don't want to hear ANY complaining from you young ones out there. Since my cancer diagnosis, he's been my number one caretaker too. We had to get to the lab first to make sure my bloodwork was in order before another paracentesis could be done. It turned out they were fine. I was amazed at the amount of fluid I had inside. Dr. Lam gave me a 6 pack abdomen again. There was another pt. in the room with me who had 8 liters taken off. How do they get around with that? I'm all short of breath, restless, back pain, etc., and they're sitting in the lobby very relaxed & calm. Anyway, I received one bag of albumin. I asked Dr. Lam about the swelling I had after the last paracentesis, let's all be adults now, yes, in my vaginal region. Again, I'm being open about this for educational purposes for those of you who may one day experience this stuff that the doctor may forget to tell you. I told him how I had propped my hips up on a pillow and laid flat on my back, it took a few days, but it went down. He told me that it DOES happen and to be glad I'm a female because men can get some severe swelling in their scrotum and it's hard to get that down, it's painful and extremely uncomfortable.
Then the same thing happened to me as last time. I got real bad back pain on the right side and my breath was short. It took a cup of water & quite some time before I could get up with assistance. I didn't have my strapping strong brother to carry me out. The nurse, who's shorter than I, guided me slowly to find dad so he could get the car, and then she got me in the lobby and an escort with a wheelchair to help me to the car. I sat outside until dad arrived and couldn't wait to lay back on my pillow.I'm rarely outside so I enjoyed the weather through my pain. I had asked the escort if he could meet us @ home to get me in the house. We made it home and I was able to get in the house & to the recliner, my new best friend.
Dad went out to get my new Lasix 40mg once a day prescription and I tried to get something to eat. The snacks we ate while waiting UIC wasn't holding me. I got halfway into the dining room when it felt like someone was stabbing me in my right back, which took my breath away. I luckily had my cell and house phone, "Do I call 911?", Of course not! I'm a nurse, one of the most non-compliant people in the world and slowly got myself back to my recliner & waited it out. As I remembered, my insides are resettling, I could feel my enlarged stiff liver with tumors much better, which grosses my niece out, and maybe it's sagging on the inside. Are there suspenders for this kind of thing? Rationalizing. The pain did subside and not too soon afterwards, David came home from work. He was kind and made me a sandwich with low salt roast beef and I had water.
After crawling to the couch, I was able to take a nap. My niece LOVES that sunken in couch but even regular healthy adults have a hard time trying to get out of it. It's well used and comfortable to her. I'd LOVE to get one that's higher and not so low to the ground, if I lay on it, I might be able to get off of it by myself. Anyway, our sister, Cathy, came by. I'm glad because I was stuck like a turtle on its back and the pains in my back were awakened too. She assisted me off of it and I had made it to the bathroom, slowly but surely and still trying to catch my breath. I was able to do #1 but as I was leaning over to wash my hands, & that stabbing R back pain came back and it really took my breath. Luckily a few family members were right outside the door. With patience and help I was able to make it back to the recliner. I was thinking, "can we move the recliner in the dining room closer to the bathroom?" With time and a comfy pillow, the pain did go away. My dad brought me dinner which I had a good appetite. I dared not leave that chair.
I had two visitors that evening, Ray & Gabe came by. It's like they were doing shift work, as Ray was leaving, Gabe came by after work. It was good to see both of them. Unfortunately they had to see me huffing and puffing and really moving slower than our turtles. My insides by that time of the evening had gotten a little better, that stabbing pain hadn't crept up on me, just the regular back pain. We shared some funny laughs which hurt but humor is supposed to heal and some touching moments. Sometimes I think think this cancer is harder for my loved ones than me, they wonder I how I go through what I'm going through. I tell them "you're my reason for being here, the best I can". If you could see me now, wearing a brown and tan muu muu with a floral pattern, tan moccassins, my white hairs growing out and shuffling around, you wouldn't think I was 40 years old. Speaking of my hair, I feel like the Charlie Brown Christmas Tree. Everytime I wash my hair, large portions are coming out, just like that tree, everytime someone moved it, more & more bristles would fall off. I just need the tinkling music in the backgroud.
Gabe had massaged certain parts of my back, by my right lower back and by my shoulder blades, I'm ticklish and this helped me forget about my back pain, but since it made me laugh, he couldn't do it for long because my body kept jerking away. I asked him if he could try to continue doing it, it'll help stimulate endorphins and make me feel better. He gently rubbed the other back areas which helped with the existing pain. After he left, I went to bed. I still couldn't lay on either of my sides but I slept until 3:30, I had gotten the munchies. My liver or some other organ, which was very palpable, was sitting funny on my right lower side, the side I have to get up on. Oh, I couldn't ignore those food cravings so I did what I had to do, held the area and got myself up. What I did, I'm not sure, but there was a weird sharp pain followed by a throbbing pain down there for a while as I putzed around the kitchen. Rice Krispies cereal. I figured that if I didn't puncture an organ & die by now, I'd live and mosied my way back to the bed. Where I couldn't sleep until 6am.
FYI, there's a detailed website on ascites on MedicineNet.com. I was told today that my ascites is not malignant. The goal of Lasix, a water pill, is to decrease excess fluids by making the person urinate a lot and hopefully I won't need a paracentesis so often. The pharmacist @ Walgreens informed my dad that there's a small component of sulfa in Lasix and the last time I was on Bactrim, and antibiotic that had sulfa, I got a rash. Today I called my nurse practitioner and she verified it with her pharmacy that if my reaction wasn't anaphylaxis = tongue swelling, throat closing, wheezing, etc., that it should be okay to take it. Well I planned on taking it after I showered and someone else was home with me JUST IN CASE. I had also spoken with Dr. Lam who verified it with his pharmacist that it's a different sulfa molecule & that I should be fine. By the time I had spoken with him, it was late in the afternoon. I was told to check my blood pressure before I take it, if it's too low, to hold off and call them back. The pill should be taken in the morning so one isn't peeing all night either.
I did get my 1,000 plus photos downloaded to Walgreens with the help of Paul & Gabe and now I have another project, to get them into photo albums. The memory book I got from Adriana I'm using for all my medical pics, ie. portacath, chemo, my medical staff and paracentesis pics. I took them for educational purposes to show people, if you're interested to see what certain body fluids and procedures are like.
I'm sorry I wasn't able to blog yesterday. I was busy getting another 4.6 liters taken off of my abdomen. I could NOT sleep Tuesday night at all. I tried sleeping in the recliner and my body wasn't having it. I was swollen, but not as large as I was before my first paracentesis. When the liver clinic @ UIC opened, I called Diane, the nurse in Dr. Lam's office. She was able to get me in as an add on. YEAH! Sorry Mr. Widdo Poopie, since your mouth is in better shape than my belly & breathing, I have priority today & your follow up appt. can wait. Jenny's calling him "Veruca" now because he's a high-maintenance dog.
I told dad about my situation when he got back from working out. Yes dad is 79 y/o and he still works out about 3 times a week since his heart attack a few years ago and he still works, as needed @ UIC and does 12 hours shifts so I don't want to hear ANY complaining from you young ones out there. Since my cancer diagnosis, he's been my number one caretaker too. We had to get to the lab first to make sure my bloodwork was in order before another paracentesis could be done. It turned out they were fine. I was amazed at the amount of fluid I had inside. Dr. Lam gave me a 6 pack abdomen again. There was another pt. in the room with me who had 8 liters taken off. How do they get around with that? I'm all short of breath, restless, back pain, etc., and they're sitting in the lobby very relaxed & calm. Anyway, I received one bag of albumin. I asked Dr. Lam about the swelling I had after the last paracentesis, let's all be adults now, yes, in my vaginal region. Again, I'm being open about this for educational purposes for those of you who may one day experience this stuff that the doctor may forget to tell you. I told him how I had propped my hips up on a pillow and laid flat on my back, it took a few days, but it went down. He told me that it DOES happen and to be glad I'm a female because men can get some severe swelling in their scrotum and it's hard to get that down, it's painful and extremely uncomfortable.
Then the same thing happened to me as last time. I got real bad back pain on the right side and my breath was short. It took a cup of water & quite some time before I could get up with assistance. I didn't have my strapping strong brother to carry me out. The nurse, who's shorter than I, guided me slowly to find dad so he could get the car, and then she got me in the lobby and an escort with a wheelchair to help me to the car. I sat outside until dad arrived and couldn't wait to lay back on my pillow.I'm rarely outside so I enjoyed the weather through my pain. I had asked the escort if he could meet us @ home to get me in the house. We made it home and I was able to get in the house & to the recliner, my new best friend.
Dad went out to get my new Lasix 40mg once a day prescription and I tried to get something to eat. The snacks we ate while waiting UIC wasn't holding me. I got halfway into the dining room when it felt like someone was stabbing me in my right back, which took my breath away. I luckily had my cell and house phone, "Do I call 911?", Of course not! I'm a nurse, one of the most non-compliant people in the world and slowly got myself back to my recliner & waited it out. As I remembered, my insides are resettling, I could feel my enlarged stiff liver with tumors much better, which grosses my niece out, and maybe it's sagging on the inside. Are there suspenders for this kind of thing? Rationalizing. The pain did subside and not too soon afterwards, David came home from work. He was kind and made me a sandwich with low salt roast beef and I had water.
After crawling to the couch, I was able to take a nap. My niece LOVES that sunken in couch but even regular healthy adults have a hard time trying to get out of it. It's well used and comfortable to her. I'd LOVE to get one that's higher and not so low to the ground, if I lay on it, I might be able to get off of it by myself. Anyway, our sister, Cathy, came by. I'm glad because I was stuck like a turtle on its back and the pains in my back were awakened too. She assisted me off of it and I had made it to the bathroom, slowly but surely and still trying to catch my breath. I was able to do #1 but as I was leaning over to wash my hands, & that stabbing R back pain came back and it really took my breath. Luckily a few family members were right outside the door. With patience and help I was able to make it back to the recliner. I was thinking, "can we move the recliner in the dining room closer to the bathroom?" With time and a comfy pillow, the pain did go away. My dad brought me dinner which I had a good appetite. I dared not leave that chair.
I had two visitors that evening, Ray & Gabe came by. It's like they were doing shift work, as Ray was leaving, Gabe came by after work. It was good to see both of them. Unfortunately they had to see me huffing and puffing and really moving slower than our turtles. My insides by that time of the evening had gotten a little better, that stabbing pain hadn't crept up on me, just the regular back pain. We shared some funny laughs which hurt but humor is supposed to heal and some touching moments. Sometimes I think think this cancer is harder for my loved ones than me, they wonder I how I go through what I'm going through. I tell them "you're my reason for being here, the best I can". If you could see me now, wearing a brown and tan muu muu with a floral pattern, tan moccassins, my white hairs growing out and shuffling around, you wouldn't think I was 40 years old. Speaking of my hair, I feel like the Charlie Brown Christmas Tree. Everytime I wash my hair, large portions are coming out, just like that tree, everytime someone moved it, more & more bristles would fall off. I just need the tinkling music in the backgroud.
Gabe had massaged certain parts of my back, by my right lower back and by my shoulder blades, I'm ticklish and this helped me forget about my back pain, but since it made me laugh, he couldn't do it for long because my body kept jerking away. I asked him if he could try to continue doing it, it'll help stimulate endorphins and make me feel better. He gently rubbed the other back areas which helped with the existing pain. After he left, I went to bed. I still couldn't lay on either of my sides but I slept until 3:30, I had gotten the munchies. My liver or some other organ, which was very palpable, was sitting funny on my right lower side, the side I have to get up on. Oh, I couldn't ignore those food cravings so I did what I had to do, held the area and got myself up. What I did, I'm not sure, but there was a weird sharp pain followed by a throbbing pain down there for a while as I putzed around the kitchen. Rice Krispies cereal. I figured that if I didn't puncture an organ & die by now, I'd live and mosied my way back to the bed. Where I couldn't sleep until 6am.
FYI, there's a detailed website on ascites on MedicineNet.com. I was told today that my ascites is not malignant. The goal of Lasix, a water pill, is to decrease excess fluids by making the person urinate a lot and hopefully I won't need a paracentesis so often. The pharmacist @ Walgreens informed my dad that there's a small component of sulfa in Lasix and the last time I was on Bactrim, and antibiotic that had sulfa, I got a rash. Today I called my nurse practitioner and she verified it with her pharmacy that if my reaction wasn't anaphylaxis = tongue swelling, throat closing, wheezing, etc., that it should be okay to take it. Well I planned on taking it after I showered and someone else was home with me JUST IN CASE. I had also spoken with Dr. Lam who verified it with his pharmacist that it's a different sulfa molecule & that I should be fine. By the time I had spoken with him, it was late in the afternoon. I was told to check my blood pressure before I take it, if it's too low, to hold off and call them back. The pill should be taken in the morning so one isn't peeing all night either.
I did get my 1,000 plus photos downloaded to Walgreens with the help of Paul & Gabe and now I have another project, to get them into photo albums. The memory book I got from Adriana I'm using for all my medical pics, ie. portacath, chemo, my medical staff and paracentesis pics. I took them for educational purposes to show people, if you're interested to see what certain body fluids and procedures are like.
Wednesday, September 1, 2010
Pardon the interruption
I apologize for the minor interruption to this blog earlier this week.
In deciding to change the URL, I did not effectively communicate the change to the folks following the blog.
But I think everyone is back and in sync again. I don't plan on making any more of those types of changes in the foreseeable future.
Ray
Subscribe to:
Posts (Atom)