Tuesday, September 28, 2010

wiped out

Sunday September 26th, 2010

Sunday was a decent and blustery cold day. Jenny had made pancakes, bacon and eggs. Our sisters Cathy & Judy, a friend named, Isreal, and our friend, Ray, stopped by to visit. Dad came home from church and blessed those who missed mass.

Later that afternoon, most of us went over to our brother's new apt. that he shares with his girlfriend and their dog, Wrigley. Of course it's close to Wrigley Field. They live on the 2nd floor and Joe assisted me up the stairs. I got to the couch and caught my breath. My rib pain had been bothering me since Friday. The apt is nicely decorated with inspirational painting on the walls, ie. "Life isn't measured by the breaths we take but the moments that take our breath away." The doorways are high enough where Joe won't hit his head on them. Wrigley is such a goofy puppy, he reminds me of the silly dog from the movie "UP" that befriends the old man, the little boy & Kevin. He does know some tricks and but if you don't watch your food, he's a bandit. They laid out quite a spread for us, we ate non-stop. I had taken a Tramadol earlier in the day and boy do they have very comfortable furniture. Joe still has the red, white and blue afgan that our mom crocheted for him. I dozed off during the party. The rest went into the yard & played cornhole while others stayed in to watch t.v. I woke to have some homemade apple pie with a crunch topping and vanilla ice cream.

We left and headed home. My nice evening was ruined because my bowels were still giving me a hard time. Literally. Stool WANTED to pass but wouldn't. My backside had become raw and I still would bleed from my hemorrhoids. This has got to be one of the worst pains ever recorded. Luckily we have some gloves that I broke down and tried to digitally disimpact myself. For those who don't know what that is, this will gross you out, it's where you go in with your fingertips and try to break up the stool blockage into smaller pieces and remove some, if you can. However, we did not have any surgilube. Back in nursing school they taught us to use dish soap but I'm thinking with all these scented ones or antibacterial stuff added to it, it could REALLY irritate something that's already irritated enough. I had done it when I worked on the floors to patients. But to do it on yourself, it takes courage, humility, pain endurance, etc.. Not a lot would come out. It would also cause me problems with urinating, I had to lean forward, really relax then the urine would flow. I told Jenny how I was feeling and what I tried. She had bought some glycerin suppositories, but it said it could cause pain and to call the doctor if there's bleeding. I'd wait to see my oncologists tomorrow for chemo.

Monday September 27th, 2010

My bowels were killing me and sometimes it felt like that stubborn stool mass wanted to release itself and any moment. I didn't want to take chances, so I took a piece of chux, that sheet that put under patients to catch any spills, and lined my panties with it, a make-shift diaper. When we got there I'm glad they gave me a private room, bed and bathroom. Dr. Mehta came to see me and I told him how I was blocked up. I changed into a robe, took everything off from my bottom and he returned with the surgilube and gloves. Jenny stayed in the room to hold my hand and his resident. OH the pain, but I had to try and relax and he jammed his fingers around to break up what I couldn't on the inside. He didn't try to remove any then had me go sit on the toilet for a bit. Only little smidgens came out during my chemo treatment. Maria, my nurse, and Vera, my nurse practitioner came and we discussed my bowel regimen for home ie. lactulose instead of mineral oil, wet wipes instead of toilet paper, anusol vs. tucks and I was given more gloves and surgilube for home.

I urinated frequently because they gave me Lasix before my chemo, along with other anti-nausea meds, Aloxi, decadron, Ativan and Emend.

Jenny had gone to get us a croissant sandwich to eat, which I ate my half. I nibbled on a few potato chips too. I had eaten half of a toasted bagel with cream cheese and half an orange earlier and drank half of her decalf coffee. She had also bought some gossip papers. She worked on her scarf and I worked on my rug. I fell asleep during the rest of my treatment and woke very weak, like my body was heavy and very drained. My rectum was still sore and I didn't trust it on the way home, so I put in a abdominal pad inside my panties just it case it decided to leak on the way home. I fell asleep on the way home, not sure when Jenny stopped and got the wipes and tucks pads, becuase I woke up when we were closer to the house. I was so tired I couldn't eat dinner and slept.

I got up to use the bathroom, my bowels were howling and so was I. I tried the mineral oil enema but it was so tiny, then I tried to remove more stool myself but couldn't. I called Jenny in and she helped me out. I'm her second patient she's digitally disimpacted. Oh did it hurt, I was bent over hugging her lower leg, tried to relax and breathe but the pain is awful. She removed that nasty blockage. I'm glad she's a nurse. She saw my pain and gave me a kiss on the nose saying, "It's out now." Those wet wipes with aloe really cool off my backside. I still hadn't eaten yet, not even the pizza Paul brought over. My stomach was just feeling nothing. He made me a big bowl of soup which I was able to eat half of. I also took the Lactulose and after checking my blood pressure, the Lasix. The rest of the night I had to pass gas I had to be cautious because some of the slimey enema stuff was still inside and that's a surpise no one wants.

Tuesday September 28th, 2010

I spent the night on the couch, one less room to run out of if my bowels decide to kick in. Which they did. It's still painful but I was passing more solid stools on my own until about 2 hours ago. I met another blockage, with the gloves and surgilube on hand I was able to remove what cooperated with me, then the rest decided to get out on it's own. Then not too long ago another larger one came which passed on it's own, painful as it was. Where is this stuff coming from if I'm not eating all that much? Hey, as long as it's coming out on it's own and not torturing me, so be it.

I'm supposed to see anesthesiology today but the nurse Melissa hasn't e-mailed me the info. It looked like I missed her call but she didn't leave a message. I called her back but only got a voicemail. I'll try again. It's supposed to be @ 12:45. I'll try to eat the eggs my dad made for me and I think #2 is calling me again. I hope your morning is better than mine so far.

I got in touch with Melissa and dad & I made it to my appt. with the surgical nurse practioner and the anesthesiologist. The potential date for my laproscopic surgery is Oct. 14th, but I may go in the night before. We have to make sure my hemoglobin, sodium, platelets, etc., are all in good shape before the procedure. My oncology dept. already knows to hold anymore chemo beforehand, we'll take to Dr. Lam about draining me right beforehand too. If all looks well, she said they might do the whole procedures of placing a shunt, debulking, etc.. I was also reminded of the risks associated with general anesthesia including the risk of death. I was told that I'd be in the ICU for quite some time, probably still intubated but enough where I could be alert enough to communicate since I'd have so much done to my body they want to keep a close eye on me. They said if I have questions, write them down and I can call them beforehand. I know everyone has a lot of questions, maybe I can collect them and send it to them, they can answer them for you. I know I didn't ask what I could have, my back and bowels were hurting so I know I wasn't in the right frame of mind. That's the plan for now. I pray I'm doing the right thing, I want to relieve some of my symptoms with these precedures. Love you all.

Saturday, September 25, 2010

Did you miss me?

Saturday September 25th, 2010

I'm sorry that I haven't written in a while. Tuesday I had become swollen in my abdomen. I tried to see if they could squeeze me into the liver clinic to get drained. The nurse informed me that they were full and recommended that I go the the ER if I couldn't wait until Wed. morning @ 0800. I tried to tough it out that day taking my diuretics, stool softeners and pain meds. Mother Hen One called later, by then I was getting worse and I kind of went off when she told me to go to the ER, she told me not to be a martyr. This coming from someone who hasn't seen her doctors in a while. I apologized for being mean. By 5:30 pm, I had become severely short of breath and had severe back pain and pain along where my liver travels along my ribcage in front. Jenny and David took me to Our Lady of the Resurrection Hospital, it's the closest one to the house. I don't think I could've made it to UIC: a) it was traffic down the Kennedy and b) a wicked storm was brewing. Dad & Marie got my wheelchair and an overnight bag ready to go. They also packed a sandwich, pretzels and a soda for Jenny who also missed dinner. She was pleasantly surprised, she only expected a sandwich but I told Marie to throw in the extras. It came in handy later, when Dave started to get the munchies while waiting in the ER. I called Viv back to let her know that I was following her advice and again to apologize. FYI, she has had a few appt.s to check her own health recently, yeah. Thank you Jenny for giving up your movie & dinner with your friend to bring me to the hospital.

The storm broke as we pulled up. David got me into triage, the timing was perfect. The triage nurse got my vitals, history then, chief complaint and got us into the ER into the last available bed. They had gotten so busy that night that they were examining people in litters in the hallways. It turns out that the nurse who took care of me in the ER lives in our dad's neighborhood. Mostly everyone remembers our brother, Joe, who worked there, they were pretty nice. Jenny assisted me to the bathroom and we had to ask if they wanted a sample, which they did and gave us a cup. That's a pet peeve of mine when I was still working in triage, people would complain of urinary problems but would go to the bathroom before seeing me. Now we have to wait for them to pee again. The nurse came in and accessed my portacath to get labs and an EKG. I was sent to X-ray for a chest film. They came back a little later and did a 2nd set of cardiac markers, just to make sure it wasn't a heart attack. Our family was texting us but we didn't know that we had reception in the room, plus I was on the monitor, so we had our phones off. Joe called radiology and the tech came to let us know to contact the family.

Around 11pm they told us that I'd be admitted, the attending didn't want to do a paracentesis in the ER. I was starving and Jenny had a mini bag of Chips Ahoy. The attending said I could eat, there were only 5 cookies in the bag and I hadn't eaten dinner. We each grabbed one then I was greedy and ate the other 2. I also had an Ensure in my bag which I drank. After the change of shift, the night nurse came and gave me 40 mg more of Lasix through my portacath, she didn't wipe it with alcohol, so if I get sick, that's one potential source. They didn't get us up to my bed in telemetry rm 418, until 1:30 am Wed. morning. OLR have these beds that puff up randomly, to prevent bed sores. I never experienced inflatable beds until then, I just sat down and noticed that the bed was "alive". Jenny and David left around 2am, what troopers, thank you both for being there with me. I had a private room which was right above the ER, sirens all day & night. I'm used to noisy nights, I've always lived off of busy streets. They put me on a Holter monitor and oxygen with a nasal cannula. My oxygen saturation was 97% in the ER but they put it on me anyway. They gave me some juice & 2 puddings in case I got hungry. They also put a container in the toilet so I could urinate in it and they could measure it later. They were also kind enough to get me 2 extra pillows. I had my usual restless sleep, I get comfortable for a bit, then the pain kicks in, my bladder calls or my belly wants a snack, I readjust the bed & pillows, then I go from feeling hot, then cold kicking the sheets on & off, then it's time for vitals check, etc..

Around 6am, my pain and shortness of breath came back. They gave me a Tramadol, which takes a while to work. Later I had received more Lasix, Aldactone and a breakfast tray. I had taken my latch hook rug to work on and was able to get a few more rows done during my stay. It was quite a conversation piece. I finally saw my primary doctor around noon. Judy & dad came to visit. Dad left and returned later. Judy had worked in a chiropractor's office years ago and had a massage that was wonderful, not too hard but it was more like pushing on the muscles and then you'd go away from the spine. I'll have to have her show the others. She'd also get to the tickle spots and I told her, it distracts me from the pain and makes me laugh. The GI doctor came around 1pm, they had me NPO "nothing by mouth" for lunch, he had wanted an ultrasound of my abdomen. When he examined it, he cancelled the U/S and ordered items for him to drain my abdomen. He wanted it to drain slowly so he hooked the needle up to a foley drainage bag to gravity. He also entered my abdomen on the right side further up from where Dr. Lam enters. He also didn't use a topical lidocaine. Thank goodness Judy was there. I'm more ticklish where he went, and I tried really hard NOT to laugh when he wiped it to clean it. Then he came with the syringe with lidocaine. Believe it or not, it tickled, hurt and burned all at the same time. I was laughing, crying and trying to control my breathing as he injected the area. He was telling me to calm down but how can I? I can tell he was getting annoyed. I was already squeezing Judy and the nurse's hand.

I had that drain in me for the next 7 hours. Joyce, Lisa and Gabe showed up @ that time and thought it was urine in a bag, nope, that's from my belly. I started to feel better and was concerned about getting a dinner tray. Of course I couldn't move my position until 10 pm. I should've urinated before he started. It didn't matter because they gave me more Lasix. Oh NO! I officially graduated into "patienthood". I had used my first bedpan. It felt like I was peeing all over myself but I didn't. The nurses aide helped me. Thank goodness I didn't have to do #2 then I'd have my masters degree in "patienthood". I had put out a total of 6.5 liters this time. I also got the usual "my organs are resettling" pain and shortness of breath that comes with it. I had my friends feel the tumor filled liver since it protrudes from my abdomen after my paracentesis. After 10 pm, my nurse came to remove the needle and all the tape that had secured it in place. You don't realized the little body hairs you have on your belly until someone is ripping tape off of it. OUCH! I had to use the commode chair, the Lasix was still working and I didn't want to use the bedpan again. The nurses aide assisted me with that and helped change my gown and underwear, both had gotten wet from the drainage procedure. She gave me a soapy towel and a dry one before I ate. I saved some of my tray for my midnight munchies.

During the night, the nurse came and said I was NPO again and hid my goodies in my nightstand. She knew I couldn't get up without assistance and sneak the food. I was to get the ultrasound in the am and they'd hold my breakfast tray. Darn! I should've eaten more of the tray when I had my chance. Again, another restless night, but I did breath a bit easier and my sleep periods were a little longer. I couldn't wait for morning. The chest discomfort started getting worse around 7 am Thursday, they did give me another Tramadol. I kept an eye on the clock and they got me to u/s around 9am. The tech said that I didn't have much fluid in my abdominal region. As soon as I got back to my room, I kept pestering my nurse, Manny, for food. Oh I was so happy when it finally arrived after 10:30 am. You can tell I'm feeling better if my appetite is back, with a vengence.

Dr. Ahmed came to evaluate me and didn't like how fast I was breathing. He hadn't seen me since we found the liver masses back in May. He promised to let me go on Friday and we shook on it. So I had the day to myself. Jadwiga, the nurses aide, help situate me in the bathroom by the sink to wash up while she changed my bed linens. I had a room that faced the south, so every morning I'd open the blinds to let the sunshine in. It really pepped me up to watch the day go by, sunny or gray with clouds, construction and of course, the sirens reminded me that life is going on outside even though I was trapped inside. Throughout the day, when the pain meds kicked in, I was able to move around my room better and worked on the rug. I kept dozing off throughout the day, catching up on what I can't get @ night. I had received Communion twice and the Annointing of the Sick rite while I was there. I had impressed their priest with our conversation with something he recently experienced, one can talk about a situation but until you actually go through that experience, will it have true meaning for you ie. his parents dying & me going through this cancer journey.

Dr. Patel, the GI, doctor came to see me later in the evening and told me that I can remove my dressing. I called Jenny let her know that I'd need help removing the big dressing he had put on me. Later on, Cathy and Chris stopped by for a bit. As they were heading to the lot, they saw Jenny & Marie heading towards CVS. ARRGH! Cathy's rival to her Walgreens. When Jenny & Marie arrived, Jenny used the alcohol wipes to get the dressing tape off. I think it hurts worse if I try pulling on it as opposed to someone else. Marie was able to get some homework done. Jenny has been very helpful, especially since certain symptoms get worse. Late Monday, she had helped me in the shower by washing my hair, getting the big gnarles out and washing my back. I had given up any reserve I had about my body and realized that when I need help, I need help, and if that means exposing myself, so be it.

Friday I was looking forward to going home. My vitals that morning however made me think it wasn't going to happen. My blood pressure was only 84/something diastolic. I didn't know if they'd let me go with that. They held my diuretics that morning. I was still urinating. Luckily I was able to eat throughout the day and got up to row 18 on the rug. I finally moved my bowels too. I had been passing gas and was glad that I wasn't stopped up. Dr. Ahmed came around 3pm and conferred with Dr. Patel if I could go home and what my medication regimen would be. I'd hold my diuretics until Sunday and decrease my Lasix dose. They had repeated my vitals and my BP went up to 107/something diastolic. I had asked for copies of my EKG, labs, CxR and u/s so I can bring them to UIC when I see the anesthesiologists on Tuesday. I thought I'd get the hard copies but didn't. I didn't get the final discharge papers, my monitor and the Huber needle out of my portacath a couple of hours later. Escort came and got me to the lobby. Paul picked me up from the lobby. We made a quick stop @ Portage Park Animal hospital to get more cat food. When we got home, Marie came out to help carry my stuff in. We also had our old couch on the front lawn, I couldn't wait to see the new one.

After saying, "Hi" to everyone, I made a beeline to the couch. It's higher = easier to get off of, it has nice big pillows, it's comfy and it matches our other living room furniture. I did sit in my recliner with the dogs since they're not allowed on the new couch. Lisa came by later and brought "UP". I always wanted to see it. I didn't cry after the 1st 10 minutes, everyone had already told/warned me about it. The thing that got me was the mean dog with the wimpy voice. I was NOT prepared for that and couldn't stop laughing, but my right liver/rib area was already hurting and only got worse when I laughed. It's funny because Lisa gives her dog "voices" too. We had to stop the film and I had to get that voice out of my head and prepare myself for when we turned the film back on. We were able to finish the movie. It was very cute. So many cute characters.

Later Friday night, I felt that I had to move my bowels, yet again (I'm like a bunny rabbit), however it was giving me trouble passing. I took my Colace, how can that be? I moved them earlier without any problems and my whole admission I ate fruit and salads, I moved around when my back or ribs weren't killing me, why now? I had restless sleep because of it and into Saturday, a few times I'd get the urge and no go. My hemorrhoids, not to gross you out, became very painful and bled. By Saturday evening I broke down and asked Jenny if she could get me suppositories, that'd be the first time I'd use one of those too. I was about to use one when I read the label and it said, "If any bleeding, hold and call your physician". Great. I had taken a shower around 7pm and had tried to go right beforehand and there was blood on the tissue. I said that I'd try to go on my own one more time and if no BM, I'd run it by Jenny if I should risk taking it. Because the label also mentioned that it can cause burning, I already had that.

Around 11 pm Friday I had that urge again. It's do or die time. God must have had mercy on me because he let it pass, it wasn't the most comfortable thing in the world but now I'm a happy camper. I hope the toilet is alright. :o) You must think that I need to get out of the house more and not obsess with my bodily functions. Hey, sometimes your body just wants to give you a hard time and you just want to rest and take care of whatever is ailing it. What good are you out in public if you're all moaning, groaning and belly-aching? There's a joke out there, the different body parts are arguing which is the most important, it goes something like this. The heart said, "Without me, blood wouldn't circulate to the rest of you." The lungs said, "Without me, you wouldn't get fresh oxygen." The eyes said, "Without me, you couldn't see." And on & on. The rectum said, "Without me, all the waste would back up and not be eliminated." All the other organs laughed until the rectum shut down. Then the other organs felt miserable and decided that the rectum is the most important organ. That's how I feel sometimes. I probably killed that joke too. I know the beginning and ends of jokes but my delivery goes wrong somewhere in between.

Good night y'all, may your bowels behave and not hurt you.

Monday, September 20, 2010

Just call me "Vampira"

Monday September 20th, 2010

I ended up taking a Tramadol a little after midnight. It did relieve my pain to a point where I did get a more restful sleep but the pain didn't go away 100%, probably down to a 1 out of 10. Dad woke me in time to wash up and throw on some clothes. David brought my wheelchair but left the feet @ home. They had a fun time getting it into dad's trunk so the door would close properly. I was still very sleepyand dizzy from the pain med. Dad's stop & go driving taking local lanes down to UIC in traffic also made me nauseated so I passed the time falling asleep in the car.

Dad dropped us off and I registered @ the desk. They were busy, again I passed time by dozing off, something I never do in public, especially without a headrest. I vote all waiting areas be supplied with recliners. It took almost an hour before my blood was drawn. Then we waited until my vitals were taken and they quickly put me in an exam room. Dr. Mah came to examine me. She asked me how I was feeling, I also told her about the surgeons saying they could remove my left lobe and place a shunt and we made a plan to get the ball rolling to get that done. Vera came in and I showed them the BP machine from home, they wrote a prescription for David to pick up a new one. I tried to take my BP twice & it didn't register on the old one even though we had just changed the batteries. I told them that when it did register, how my BP was low and that I hadn't been taking my Lasix, but I did take it yesterday. I also showed them my bloated belly and they said that, if need be, I could get it drained this week. They informed me that my hemoglobin was low, 8.5, and that I'd be needing a blood transfusion. Maybe that's also why I've been so tired, weak and short of breath lately. We planned to do it today and then I'll get chemo on Wednesday. I want a day off to enjoy my new blood before the chemo destroys it. Also it sounds like they have a very busy Tuesday scheduled already.

Maria, my nurse came and brought us to a room with a bed. It's a good thing because I was still very sleepy. She accessed my portacath and got the type and crossmatch blood sample. It turns out that I'd be getting 2 units of blood. I signed the consent and we waited. David went to get the BP machine and lunch for us. We split a ham and cheese croissant sandwich with "light onions". That thing has so many onions you could smell it a mile away with the container closed. David put his onions in the garbage can and anytime it was opened it reeked. By the time we finished eating, the 1st unit of packed red blood cells came. Again, it's weird being the pt. in the bed with the IV hanging & it's attached to me. We called the family to let them know we'd be there longer than planned. I called Coye and told him to call me "Edward", he was like, "What?" I liked vampires growing up (however I'm for Team Jacob from the Twilight series, go werewolves!) now I'm taking in someone else's blood but not by mouth.

I worked on my latch hook rug, David worked on Soduko puzzles, we tried to get the VCR working but our t.v. didn't cooperate. We enjoyed the conversation from across the hall with the 2 ladies talking about their various family members, they were so LOUD in their conversation. They gave me 40 mg of Lasix in between my transfusions to prevent fluid overload. It did seem to work, I had urinated several times. He left again to get some candy and gossip magazines and to find our dad who came back to get us after my 2nd transfusion was done. Boy was my stomach tight. I was told to take another 20 mg of Lasix when I got home. Vera also gave me a new protein drink, Mocha Cappucino flavored.

We got home and I'm so bloated and my abdomen is tight, and my back is hurting. I told dad that I'll see if they can drain me tomorrow instead of waiting. I had taken the extra 20 of Lasix but I really don't think it did much. I could barely eat dinner. I did move my bowels but I still am very big in my belly, I feel like Fat Bastard from the Austin Powers movies. I hope I can get SOME sleep tonight. Who'd have thought I'd look forward to big needles, but if they cause me relief where I can breathe better, I'll go for it. Wish me luck with the sleep and comfort dept. tonight. UGH! By the way, that new mocha protein drink is YUMMY!

Sunday, September 19, 2010

Crampy back

Sunday September 19th, 2010

That's what I've had all friggin' day. OWIE! Massages worked temporarily, plus they tickle; lying in different positions solves it for a while, Wah! Make it go away. GRRR!

I was very tight in my abdomen today too, my blood pressure machine keeps showing my systolic blood pressure lower than 100 and my diastolic blood pressure 74 or below. Do I take the risk and take a Lasix pill to help with the excess fluid? I did and informed my family to keep an eye out for me. I also had a pain in the center of my abdomen, which usually means I'll have to go #2 eventually. Since chemo affects the flora of the GI tract, all the fruit and veggies I eat might not be enough, so I'm still taking Colace to keep me going.

I wish I was feeling better, my friend, Odette, stopped by as well as Dean, a coworker whom I haven't seen in the past few months. I was able to rest for a bit after they left. Then our Aunt Helen and cousin, Viki, stopped by. I always ask if anyone can donate back fat for me. Viki said she would, she noticed how bony my back has become when she massaged it. We worked on the kitty puzzle she gave me earlier this year. Then later in the evening, it was Pay-per-view wrestling and a bunch of other friends and family came by. By the time people started arriving for wrestling, I was tired and my family suggested that I go in the bedroom to try and sleep. I was able to sleep a bit but changed positions mulitple times.

I woke after the wrestling was over to feed my dogs. Now I'm hungry again and nibbled on some wrestling potluck leftovers and a pear. My appetite was small today. I hope I don't need another tap, it's too soon after this last one. I'm going to bring in the blood pressure machine when I go for chemo tomorrow and see if we can compare my vitals to what they get @ UIC, my BP is usually better there. Maybe I need a smaller cuff since my upper arm is skinnier. I'll also see if we can get some other exams scheduled that the surgeons would need, I hope they spoke with each other. I'm going to try and hit the sack again, my chemo appt. is @ 0900 tomorrow. As one coworker told me to say, "Thank you God for the pain, You are the doctor and the medicine." I'd take a Tramadol but that pill makes me dizzy. I'll take it tomorrow during chemo like they did last time. David will be going with us and he can lug me back to the car & into the house.

Thursday, September 16, 2010

Hard decisions

Thursday September 16th, 2010

I had a dental appt. today in the Roscoe Village area. I went for just a cleaning. My ususal dentist was off that day, but the one who was covering told me how she went through breast cancer. She had asked if I had a port, which I do. She recommended antibiotics. I had totally forgotten about that, I remembered that those with heart valves issues needed them but I didn't even think about those with shunts or ports. She also gave me Biotene tooth paste & mouthwash, for dry mouths that one can get with chemo. They also recommend alcohol free mouth rinses, I believe ACT has a version because the sensitivity that chemo may cause. If one has ANY mouth problems related to treatment, let your dentist and doctors know.

After the dental appt., I treated dad to lunch @ Nohea, a cafe right across the street. They have good food. I wanted to see if they had chocolate croissants but none were in the display case. I had a chicken salad sandwich, he had a BLT. He was hungry, he ate the whole thing and the side of cole slaw that came with it. They also have pre-packaged goodies which I asked if he wanted to look at. He said, "No." However, I came out of the bathroom, he had his hands on a few items, which he bought. He really liked the place and wants to go back.

We went home, our friend, Viv and her daughter came for a visit. It's been a while since I've seen her, but since we talk quite a bit on the phone, it's like I only saw her yesterday. We spoke of my decision, her sister who's a radiologist and works with cancer pt's agrees with my decision. I know one brother and sister aren't so keen on the idea which we still have to discuss. I informed my nurse practitioner and she agrees with my decision. I just have to call the nurse practitioner in the surgery dept. to get the ball rolling.

Friday September 17th, 2010

Today I was a little productive. Dad & I went to Walgreens and occupied both photo kiosks to develop our pictures. We picked up more Ensure to get me ready for my next round of chemo. I'm not looking forward to it. This Eloxatin has more side affects than the Cisplatin. Is it shrinking my tumor? I don't know but I hope so if I'm going through the rough patches. I'm also in a dilemma, my blood pressure has been less than 100/60 for the past few days but my heart rate has been 128. I haven't been taking my Lasix so I'm worried that I'm putting on fluid quicker. However I haven't noticed any ankle swelling yet. Maybe I should just have caffienated drinks to get the excess fluids out without bottoming myself out with the Lasix.

After Walgreens, I treated dad for lunch for Chinese. I only had the wonton soup, 2 fried wontons and a few pieces of teriyaki beef with chicken fried rice. This Chinese place has the sweet and sour sauce with real fruit bits. Our brother, David, must love that I have a small appetite because that means more leftovers for him. Then we wandered over to Illinois Nails where I've been getting my nails and face waxing done for the past several years. This time my nails are a glittery purple and she made the smiley face on my big toes with white polish and gave them a green nose. They remind me of the Pac Man ghosts.

Later that evening, our friends Lisa, Eric, Jane and their daughter, Marisa, stopped by. Marisa will light up the darkest room with her smile, laughter, and they way she screams @ my dogs, then starts laughing. She reminds us of "Boo" from Monsters, Inc. Her hair was even in the 2 little pigtails on the top of her head. Jenny had Marisa walking and still threatens to eat her, she's so cute. We cooked Tombstone pizzas, another item not on my diet, but I only had one slice. Jane & Eric brought some apple strudels and pecan pastries from Costo. Good stuff. Jane also brought some dark chocolates. It's good to have people over. They understand when my pain is kicking and I have to rest up in my spot, aka. the recliner.

Saturday September 18th, 2010

Today is the day Marie's Mexican grandparents were hosting a late lunch @ their home. I worked on another row of the latch hook rug, I'm trying to get a row done every day, some days it's not possible. We got ready and arrived there around 2:30 pm. Paul brought the Shanghai eggrolls and pancit, so it was a Mexican/Filipino feast. If I wasn't so bloated, I probably could've eaten more. If I didn't have this cancer I would've like to partake in the margaritas and wine that they served. The food was wonderful and bountiful. We polished it off with plenty of good fruit, tres leches cake and later on, for the first time, I was introduced to waffle bowls for ice cream. What a cute idea and edible too. I was in awe. I need to get out more.

Since I still have a hard time sleeping during the night, I hadn't had a nap yet. I was getting really tired and Marie's grandma set me up in a bedroom. The family had gone to play cornhole outside and the tabletop version inside. I woke later to tons of laughter, they were playing Pictionary, including the grandparents. I LOVE that they still heckle the young ones and you can't get mad @ them, it's funny. I joined them downstairs to catch the end of the game. There was a card that had the San Francisco Giants. We're like, aren't they in New York? How old is this game?

We made it home, I have more guests stopping by tomorrow. Better get them in now because I know I'll feel like crap come Monday after chemo. Goodnight for now. I hope I get some shut eye.

Wednesday, September 15, 2010

My body

Wednesday September 15th, 2010 HAPPY BIRTHDAY JUDY!

I've been up since yesterday, Tuesday, morning. I knew I shouldn't have put off having my stomach drained, now I'm the one who's suffering and can't slept. I am now counting down the hours until I can get my paracentesis done. I've tried sleeping in my niece's bed with several pillows, I've tried sleeping on the couch, then I moved to the recliner. I've moved my bowels and bladder, snacked already and finished the 2nd book of the Pretty Little Liars series and started on the 3rd book. I was on Facebook and tried the couch again and now I'm sitting in the recliner typing my blog.

Don't get me wrong, I had a decent time Tuesday with my sisters and cats, a lot got accomplished, they cleaned my basement and dining room table and did my sheets, but I could've had a better time if I could've just been able to breathe. I was huffing and puffing, ate only small portions and just trying on my shirts that don't fit my belly anymore, got me winded. I laid down while I could with several pillow behind me. My 3 kitties joined me on the bed. We had cupcakes and sang, "Happy Birthday" to Judy. A coworker had stopped by and she said a few prayers with me and gave me some goodies from the Philippines and another gift. It was good to see her, I hadn't seen her in the months since my diagnosis. Even though I knew my blood pressure was on the low side I took a Lasix to see it'd make me urinate and get some relief, but it didn't work. Then I felt really dizzy and missed my niece's volleyball game. (By the way, her team won, YEAH!) People I spoke with on the phone said that they heard me trying to catch my breath. Judy had gotten me back to dad's, I had a little to eat, because I was hungry but my stomach could only tolerate a little food, then I laid on the couch with a few pillows to relieve my dizziness. I don't think it helped with my already swollen abdomen to have spaghetti sauce with garlic bits in it, which just added fuel to my fire. My fault, but it's rare to have spaghetti. I hope they take me @ 10:15 in the Liver clinic and not have me wait for a couple extra hours in the lobby squirming like I did last time, then again, I was an add on. I'd pay extra if they'd have to squeeze me in.

I had spoken with Mother Hen One and she had a hard time with my decision about having surgery, which I know I'll encounter with others. It's my body, I'm the one who's living with all the nice discomforts of this Bastard cancer, the chemo and it's side affects, the ascites, the pain, the shortness of breath, the weakness, neuropathies, constipation and sleepless nights, and if there's some relief out there for me ie. the shunt and removal of part of this growth, so be it, I'm going to go for it. We're all going to die one way or another, some day, I know of the risks of surgery, but I want to be active in this care. Plenty of people had surgeries for cancer and survived. She had 4 children, I told her it was a risk every time she gave birth. After a while the initial shock wore off she could see where I was coming from. I guess everyone is used to me being the healthy one and now that I'm facing something others have had, surgery, and it scares them. If half the cancer can come out, then do it. I'd like to see it, the ugliness inside, causing me such pain. Like our dad did when Cathy's appendix came out, we had pictures of it. When the time comes, as Judy saw on a website, that this one cancer pt. decided not to pursue anymore treatments, that was HER decision even though it's not what her loved ones wanted. I'm not @ that point. I then spoke with Mother Hen Two. As she put it, people want to be selfish with me, they want me around forever, which we all know isn't a possiblity, we all will go when our time comes. I don't want to hasten anything. I reassured Mother Hen One that it wasn't just ONE surgeon who spoke with us and made that decision, but a TEAM of surgeons who reviewed my scans. He's not a new graduate, he's been working with this equipment for a while now, it's his field of expertise. I reminded her about Susan, the lady who had her successful surgery @ UIC and is cancer free for 2 years. Plus I told her how they're going to do more testing before they slice and dice to make sure I'm a candidate for the removal, they're not just going to go in there cutting willy nilly. I also mentioned how he has plans to deal with the tumors in my right liver lobe afterwards. We have to have faith in God, the doctors, their hands, the equipment, etc..

It's a lot to take in and deal with. I've talked to more family who will support me, knowing that this is my body, as one sister put it, I'm not twelve anymore and can make decisions for myself. No one knows how I'm feeling inside, all the discomfort I describe. Some wonder how I deal with it, because they say if they were in my shoes, they wouldn't know how to bear this. They say that they gather their strength from me. Little do they know, I gather it from my family and friends. I guess others are used to me being one of the young ones still. I'm number seven out of ten, near the bottom. When we were young and bad news came, we were always given the gentler version of things. I might have mentioned before that our mom had a "silent" heart attack or a "minor" stroke. I'm hoping to have any major procedures done after the charity gathering, I want to enjoy everybody. Plus our aunt will be here from the Plilippines. I'll have to make sure I'm tapped too so I won't be gasping for breath while greeting people. I hope I don't have chemo that week otherwise you'll see me weak and with fresh neuropathies, ie. "Oh look @ Jessie, she just spilled her drink on herself and she isn't even drinking alcohol."

Well, it's 6am on Wednesday, I'll try to see if I can get some winks. Wish me luck. Everyone asks what they can do for me, pray for sleep and a successful surgery.

It's about 2pm Wednesday. My bro, Joe, had taken me for my paracentesis. They took another 4.5 liters off and I received 2 bags of albumin this time. I got to see Dr. Berkes, my liver doc. It's been a few months since I've seen him. I told him and Dr. Lam about the charity gala and showed them the flyer. We also took more pictures. I gave Dr. Lam his pic from my first visit, he laughed because he said his head looked big. I also told them how I saw the surgeon and they both went to read his recommendations. They sent off a container of my fluid to cytology. Again I was wiped out from the procedure. Thank goodness Joe was there, I don't mind going with my dad but I feel bad if he has to lug me around all short of breath with back pain. It took a while for us to get a wheelchair, Joe had to retrieve one himself. We got back home. I had a sandwich roll and fruit with some water. I did take a Tramadol for the pain. Joe & I were watching 80's videos when he started falling asleep on the couch. I told him it's okay if he does nap, he looked so tired. He curled up and hugged a pillow like a little baby. Cute. Dad started giggling that he fell asleep before I did.

I crawled to the bedroom and zonked out for 2 hours. I slept on my sides, the pain med was working. I got up to eat some chicken adobo, and boy did I eat. I wanted to shower later but sleep and dizziness were hitting me. Either it was the medication or my body wanted to catch up on what it missed. I hit the sack again and slept for 3-4 more hours. I got up for about an hour, gave Judy a call for her birthday and I wanted to shower but Jenny was doing laundry, then Marie jumped in the shower and again, sleep was calling me. I fed the dogs but I couldn't get up from my squatting position, I had to hold Mr. Widdo Poopie's plate otherwise he wasn't going to eat. Jenny came to help me up. What a weakling. Was it the medicine? Was I weak from sleeping all day? I don't know but I crawled back to bed & zonked out. I don't like not being in control of my body. I'm wondering if it's the medication that made me so sleepy and dizzy. I'll have to talk to Dr. Lam about that. I'll be happy taking Extra Strength Tylenol. Jenny was happy that I did get some sleep.

It's now 5 am on Thursday. I got up to snack of fruit and an Ensure and I wanted to finish my blog from yesterday. I have a dental appt. later today and I need to get in a good shower and yes, more sleep. Good Morning y'all? It's 6:22 am. ZZZZZ.

Monday, September 13, 2010


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.

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!

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.

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.

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.

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.

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.