Friday, October 22, 2010

Writing on a COW

Friday October 22nd, 2010

Hi everyone, sorry I hadn't been able to write. I went into the hospital to have my procedure on Tuesday Oct. 12th at 0700. I had recuperated in the Walter Payton Liver ICU on 7 West, not 7 East (there's a few stories behind this) until this past Sunday and then was transferred to a regular surgical unit, 5 East. My family was kind and shanghai'd my cell phone and my latch hook rug, so I could rest. I wouldn't be able to use them anyway because of the locations of the painful IV lines in both wrists. I was bound by an arterial line to my right wrist (which was sewn in 2 places to my right wrist), a 16 gauge heplock to my left wrist, a foley catheter, I had 2 surgical scars to my left abdomen, one to the left side of my neck and I already had my portacath in my right subclavian (chest) area. I also had a Denver shunt placed inside my body. I couldn't use the phone if I dared tried. Every time I moved my hands, the heplock and arterial line would move around and irritate my wrists. OWIE! I felt like C-3PO from Star Wars (is that how you spell his name?) I was very stiff and couldn't move around much. I did get home yesterday, Thursday, October 21st. One of my friends suggested that I write my blog while on my pain meds. Strawberry Fields Forever.

On my last day at the hospital, I felt well enough and asked the nurse about the free Wi-Fi. She pulled a COW (computer on wheels) into my room to let me use it. The computer was already accessed. She warned me that they block certain websites. They had blocked Facebook because staff was using it. This computer had it. However, when I tried to catch up on my blog, it blocked it. So I decided to update it when I got home. Now most things that I write may be out of order because I was so in and out of it, due to pain, pain meds working their magic, being woken up several times for vitals, ICU and surgical doctors and nurses checking up on me, and multiple other situations, but not by "The Situation" himself. He was too busy getting kicked off Dancing With the Stars. I'm warning you now, this may be loooong entry.

Monday Oct. 11th, 2010

First of all, I just want to thank everyone for making my benefit on Sunday 10-10-10 special. Those who sent out the invites, helped out, showed up (especially those who travelled far and wide to get to the Irish American Heritage Center), donated, volunteered, sang, danced, made balloons and hats for the kids, face painted, provided security, provided videos, baked, deejayed, served, ran out and got more food, made gift baskets, organized the raffles and silent auctions, cleaned up, etc.. Seeing all the love, generosity, kisses, smiles, hugs, tears, family, friends and coworkers, not just mine, but my family's friends and coworkers as well, neighbors that had moved away but the family reached out to them, people from all parts of my life, grammar school, high school, college years and to the present, everyone who's supporting each other, my family and and me (or is it I?) in this cancer journey. The room was filled with so much positive energy my family couldn't sleep until 3:30 am talking about how wonderful it turned out and how good it was to see everyone. I hope everyone had a great time. I was tired, achy and pooped by the end of the night but I'd do it all again just to see y'all. I also want to thank those who tried to get me to eat, I did get some nibbles in, and Nancy for the heat wrap, Lisa for helping me put it on and all those who massaged my back. It helped me get through the night. The food was yummy, your well wishes banners were sweet, the flowers were beautiful. I did eat a big bowl of strawberry frosted mini wheats when I got home. Thank you all for a night to cherish.

Mon. morning I called the surgical NP, Melissa, and she verified that I will be admitted tomorrow, Tues. at 0700, I'll have one last paracentesis that day and then my surgery will be on Wednesday, Oct. 13th. I notified my family and friends. Dad loudly said that I was only going to an appt. to see IF I was going to be admitted because that's what Vera told him on Sunday. I had to clarify to him that I was definitely being admitted under SURGERY service, not oncology, and that surgery will be on Wednesday. That's when we noticed his nervousness had started.

Jenny, Marie, Cathy and I then drove to Indiana to visit our mom, brother, John, and other relatives in the cemetery. Yes I was able to waddle to their graves, again, I wish I was waddling to show them I was carrying a baby inside instead of this ugly cancer. After changing the candles, and saying prayers, we drove to The Wheel, a restaurant on Indianapolis Blvd. for some lemon rice soup and big puffy warm rolls. They serve everything from pancakes to stir fry to hot dogs, salads, gyros, chicken, etc.. Once there, Jenny and I smelled the saganaki. I said, "What the heck, I'm being drained tomorrow and I won't be able to eat this type of food for a LOOOOONG time." I buttered my roll, put a piece of saganaki inside, dipped it into the lemon rice soup and savored the flavors. I was in Heaven. PURRRRRRRR! I had saved room for a small chocolate sundae with whipped cream and a cherry on top. Cathy had a taco salad and Marie and Jenny shared a patty melt. Aunt Helen, our mom's sister, joined us shortly, she was on the way to see her great grandchildren. It was good to see her before the surgery. I was super restless, my belly was swollen and painful in some parts and my back was cramping and I got short of breath. It felt this way in the car ride up there, I had tried to recline somehow in the backseat and Cathy tried massaging my back, it helped a wee bit. On the way home, I sat in the front so I could recline the seat and was a little bit more comfortable but big belly wanted to harrass me. I took a Tramadol at the restaurant before we left (come on, kick in little buddy).

Later that evening, Jenny and her son, Peter, came by to pick up the gifts their family had won at the benefit. Malaika also came by with her 2 sons in their Chicago Bears outfits and her special lasagna. Dad whipped up a salad and fruit as side dishes for dinner. As swollen and painful as my belly was, I had a pretty decent piece of lasagna and some grapes. My family fell in love with the boys, they're so CUTE. My family sang praises for the lasagna. (We get excited when there's good food, I'm sure some of you do it too.) Little Ryen was tired and soon started crying and Marie got Rashad to hold Widdo Poopie. It was so good to see Malaika, she can always make you laugh and hold you up when you're feeling down.

After they left I started packing for the hospital. Jenny said that I didn't have to pack too many panties, I'd be having a foley catheter, ugh! I got my toiletries together and couldn't sleep. I figured that I'd be out of it for a while anyway come the next few days.

Tuesday October 12th, 2010

Tita Lory, Dad and I got in the car to drive to UIC. He was very choppy in his driving and I reminded him that we'll get there, he didn't have to rush. He started calming down while we were on Elston and he started reminiscing about Malaika's lasagna. I wish he'd verbalize his feelings instead of holding them in but we've learned to read his cues and realize it's his way of dealing with stress. I just spaz out and get emotional, which some of you have already experienced. Once in the admitting area, it took about 2 hours to find a bed for me and 2 other pts. The hospital was full and they had to wait for some discharges. I got a bed on 7W, rm 722B. When I got up there I had a roommate, but she left after about an hour. Tita Lory started talking with the Filipino nurse blocking her from getting my vitals and admission done, I had to ask auntie if the nurse could do what she had to do so she can get her work done, THEN she can socialize. The beginning of a shift is always the busiest. The nurse accessed my portacath and drew blood. She was able to get my admission paperwork done and got me in the official hospital garb, a gown. Not too soon afterwards, dad took auntie home, they didn't get much sleep the night before and auntie hadn't had any breakfast. They had brought food but didn't eat it or go to the cafeteria, they preferred to go home.

Later that day, most of the family and some close friends came to see me. Charles was out of town but would return Wed. evening, he was out of town for work. He tried to figure out my surgery schedule but it changed after he made his work plans for that week. Odette came with her mom and put my hair in braids. They stepped out when Ultrasound came and did the paracentesis at the bedside. This time the doctor entered my body right above my bladder region. He didn't use the topical lidocaine but he went in the with the straight needle and lidocaine first. I felt it tickle with pain, some pain went into my bladder region, that was a first. Well we knew he was in the right spot when my stomach deflated. He removed 3.3 liters this time. The staff soon learned that I'd be having a lot of visitors and started to have them take turns while others waited in the waiting areas. I was able to eat a late lunch and dinner but was NPO after midnight. Odette brought some chocolate covered orange slices which were very good, it made my other guests who tried them get addicted, you couldn't have just one. I heard dad knocked his side mirror on the ticket booth getting into the parking garage. My older sisters were already making arrangements to get home and to get the hospital the next day. I'm more worried about my dad than myself. I told those who came by and a few on the phone that I felt very calm and confident and that I had put my life in God's hands a while ago. I'm looking for the comfort this procedure may bring me. Before Jenny and Marie left, Marie wanted to spend some time alone with me. I had her climb in bed and we just held each other tight, told each other how much we loved each other and I'm glad I was there to help raise her and that I want to be there to continue watching her and her cousins grow. I remembered about them removing jewelry before surgery and I gave them my necklaces and bracelets to wear. I wore the string bracelet Sue sent me from Cali, it was stuck in my name and allergy bands.

By this time, I had gotten another roommate, a Filipino/American who was a historian. She was 72 y/o and had to have a 2nd procedure the next day too. She had just come out of ICU from having the first procedure. If she can tolerate that, I can tolerate my procedure. I still had my cell phone, caught up on last minute calls after Gabe left. He stayed until the nurse came to help me wash up with the special soap one needs to use pre-procedure, the night before and the morning of the procedure. No lotions, conditioners or deoderant should be applied after using it. It's to help reduce potential for infection. I will take all the hugs, kisses and "I love you's" that I received that day, plus the energy I was still experiencing from Sunday, just looking at all the lives I've touched and how they touched mine, gave me strength to get through this. My roommate was very positive herself. We wished each other good night and good luck for the next morning. I stayed up working on my rug. My family told me that I'll be the one to finish it and I told them that I would.

We can't forget this date, it's the day they started getting the 33 trapped miners out of the collapsed mine in Chile. Lisa her and her mom stayed until they got the first few out. Yeah! It was past visiting hours but as long as you're quiet the nurses won't bother you.

Wednesday October 13th, 2010

The doctors came early after I finally got to nodding off. They ran over the plan. The main thing was that I was going to get a shunt, they were going to take out part of my left liver lobe and do some radioactive frequency ablation to some nodules as long as there was no signs of metastasis (spread of the cancer from my liver). I was told that I'd be going in around 11am and that there was a case before mine. My family showed up. Both my roommate and I were more concerned about our next meals and we both made some last minute calls. I was so hungry and had a hankering for ice cream, I had asked all those who could eat, to eat some ice cream for me. No one really said, "No" to that request, diet or no diet. As 11 am came and went, my family was concerned about how much longer until they would take me. My ride came around 11:30 am. Another round of kisses and hugs from family and they went to the waiting areas. They had brought their bags of things to keep them occupied. I walked to the litter that would take me to the OR (operating room) on the 3rd floor. I wished my roommate good luck again, hers wasn't going to be happening until 2pm. My family had taken all of my belongings at this time since I wouldn't be coming back to this room afterwards. Tita Lory was going to be in the chapel during my procedure, I hope she ate a big breakfast.

Once in the OR, I met my anesthesiologists again. I signed the consent papers for the procedure again and for a Type and Cross in case I needed blood products. They introduced me to the "margarita" in a syringe I was going to receive in my already accessed portacath and I also reminded them that I can't have heparin before they would put the arterial line, intubate me and place a foley into my bladder. They had me repeat what the procedure would entail before knocking me out and they were impressed that I remembered most of it. They gave me the margarita and the next thing I knew, I was being wheeled to the recovery room. I had periods where I woke up in the recovery room and they were busy. I remember talking but not sure what about, then dozing off. This happened on and off for a couple of hours. By the time I was more alert, the recovery room was almost empty. They had kept me there a little longer while they got a room ready for me. Dr. Giulianoti, my surgeon, wanted me close to the rest of his patients and had me placed on 7 west in their ICU, usually reserved for transplant pt.s, so if one came, I'd be the first to be moved to the step down unit. I was in room 733 WEST, not east.

I found out later that they were able to place the Denver shunt, I have to look it up for more info. myself, however, when they went in, part of my liver was attached to my intestine, so they separated that and they took a biopsy to see if my cancer had spread instead of doing the other items they had listed on their agenda. I mentioned earlier all the lines and surgical sites I obtained.

I was able to speak but my mouth was extremely dry and I had funky cracked lips and tongue. My throat was sore too. If I can recall, Kathy and Rachel from work were there, Gabe and Eric showed up and later Judy and Cathy came by with my glasses. I felt like crap and Eric told me that I looked good. I wonder how bad do I have to look to look bad. I was given the wet mouth sponges and I had to spit in the Yankauer suction with assistance. I had most of my guests help me with it. My left side was killing me from my abdomen to my neck. I was able to receive Tramadol by mouth, I was still being wimpy with my pain meds. I was able to have meds with sips of water and I needed assistance with sitting up to take it. Oh, that cold water tasted good. Surgery and the ICU docs would come and check on me. I had bowel sounds but was not passing gas or stool. It's a good thing, I wouldn't be able to wipe myself if you paid me. Anyone, even if they so much as glanced @ my left side or attempted to touch it, my darn ticklishness would kick in which would tighten the area then the post-op pain would kick in even worse. Gabe jokingly almost touched it and I jerked, yelled and tears came to my eyes. He saw what he did, Eric told him, "Nice going." and Gabe apologized profusely. Anytime a doctor or nurse came to check my wounds, palpate my abdomen or listen for bowels sounds, as long as I guided their hands slowly or placed their stethoscopes, I wouldn't react that way. I remember Rachel singing to me and Judy and Cathy trying to get me to sleep, massaging the non-taped part of my left forarm and reading to me from the gossip papers.

It was nice to hear the ice cream stories the next day, I heard David had a nice sundae in the cafeteria, some friends had gone to the Village Creamery, up on Waukegan Rd. Joy gave me a pic of Maya eating it. I forgot to tell my bro' Chas when he called from out of town the morning of the 13th when the idea hit me. It's always a good time to make up for it.

Friday after my procedure, Paul came to visit with auntie and had brought a container of Garrett's popcorn, caramel and cheese. Did Gabe and Lisa know to be there on this day? Paul opened the container and boy did it smell heavenly. Lisa said she'd have some, in the next 4 seconds. Why 4 and not 3 or 5 seconds? So Paul dug in. I had just started a regular, 4 gm sodium diet and wasn't sure if I could have a taste. I held off until I had the approval of my doctor. Later, Judy and Cathy came by and my doc said I could have a small amount. Just a taste was good enough for me.

It's a good thing we took the dressings off, one of my surgical sites was tender. It was pretty red around the site and when we pushed near it, some drainage was coming out. I was started on Zosyn (IV antibiotic) and Clindamycin (an oral antibiotic) over the weekend. I'm glad we caught that before I was sent home and I had told them that Dr. Giulianoti wanted to watch me for a few days. I had started to get up to a chair on the 2nd day post-op. I figure if dad could do it after his open heart surgery, so could I, foley, IV's and all. By day 3, all the lactulose and colace finally kicked in, and I started to pass gas, saying that I had a kitty in my backside that kept "purring". Hey get it out, then I'd get real food. A liquid diet was good, especially the first cherry jello but after 2 days of it, it got too sweet. While I was still there, I received 2 units of red blood cells, my hemoglobin had dropped to 7.7, platelets and later in the week some potassium and magnesium drips, so it's a good thing I did not go home that first weekend. By the way, I learned one can't store jello for a later time at room temp., it turns back into liquid.

One thing I realized is how small this world is. My aunt who was visiting from the P.I. (Philippine Islands) knew some of the nursing staff on 7, they had worked at St. Elizabeth's together. One tech on the night shift, Nessie, is the neighbor to my aunt's landlord so they knew each other for the past 30+ years. One of my coworkers went to the same nursing school as the nurse taking care of me back in the Philippines. My friend, Jenny and her mom worked @ UIC. My coworker's wife, Jeanette, works on the 8th floor and came to visit. One of the nurses, Rose, went to St. Ed's, Good Counsel & UIC with me and had been working there since nursing school graduation 18 years ago. 2 coworkers who retired from the VA work there, etc..

The phone rang one day and there was an irate lady on the other end, cursing and yelling. If that was someone I knew, I wouldn't care to know them much longer, so I hung up. The nurse had come in and told me to ignore it because it kept ringing 3 times after that. Later 2 friends had come to visit at different times and BOTH had gone to 733 East, instead of west. They noticed something was wrong when they peeked at the female patient in the bed and one thought, "Did Jessica get a tan?" If that earlier phone call was for the other lady, it's kind of rude to chew someone out when they're feeling sick. On another night the escort guy came with a wheelchair. Mind you, I'm sitting in a gown, with an IV and my foley catheter in place. He's smiling saying, "Okay, get dressed." I asked, "Where are we going?" He told me that I was going home. I didn't think so. I asked him if he was looking for the lady in 733 EAST. He checked his papers and realized his error.

Speaking of foley catheters, my main concern when they asked me to get in the chair was, "How will this thing drain if I'm sitting on it? Won't it get kinked off?" They secure the catheter to one's thigh with a special device so it doesn't pull/tug. They give you a little slack when the pt. has to move around. So when I sat in the recliner, I reclined right away to keep the flow going, the best it could. Men have it easier, they get a little more leeway with the tubing where it enters the body. I didn't realize that the tubing can twist and it can cut it off the flow. I was on Lasix and in the middle of the night, my bladder felt full, I called the nurse and she untwisted it. I had relief and I could feel the bladder drain, I had 350 cc's inside. So I experienced some complications but am glad that they could relieve it too. It was a little painful when they removed it a few days later, so many odd sensations to experience and I kept praying that it wouldn't turn into a UTI (urinary tract infection) because insurance companies won't pay for that if someone gets it in the hospital from a foley.

When I was transferred out of the ICU I was told by my nurse that I was going to, 5 EAST, the escort who brought me down was told I was going to 5 West. We passed an officer and entered the PEDIATRIC ward, 5W. On his phone, his instructions said 5W. The 5W nurses chased us back to 5E and sure enough, that's where my room was. I could've stayed on 5W if I was going to be a big baby. My food and meds also had a hard time finding their new home too. They had to scrape up some sammiches and an ice cream for my dinner. I ate one sandwich and saved the 2nd one for later. People tried to call me and they were told that I was discharged or they weren't sure where I was. I'm a hard to reach type of girl.

Another odd phone call I got was some guy looking for a lady. I told him that I was the only one in a private room. He continued to ask me if I knew if she was discharged or transferred. I told him that I'm also a patient and I don't have access to that information and to call the operator back. Duh!

The Monday after my procedure was done, they had taken me to ultrasound to make sure my shunt was working properly, which it was. Then on Tuesday, they sent me again because I told them I had tenderness and redness to my left side near the surgical sites. I also thought it was more swollen. They wanted to rule out infection. I had fun in u/s, I was tender from the incisions and still ticklish so I was stifling my giggles, with tears in my eyes and hoped the images turned out alright. Then they'd move the wand and hit a sore spot. OH! They said that there was some tissue swelling but it was not infected.

When I got back to the room, dad and Gabe were there. Then for some reason the phone rang, 5 times in a row, one call right after the other. Did someone put the word out that I just returned to my room? Dad left after that. Then the Spanish-speaking only lady from the chaplain service came to see if I wanted Communion and to pray. Gabe had to translate. She said the "Our Father", "Hail Mary" and the "Apostle's Creed" in Spanish while we recited it in English. I have to be honest, my brain was elsewhere and I couldn't for the life of me remember how the Apostle's Creed started. So I looked at Gabe for help, the former altar boy. If he tried tell me, I couldn't read his lips, then I tried listening but all I heard was Spanish, so I just shut my mouth and waited for her to finish. I don't even think Gabe knew because I didn't hear anything from him. I guess since I knew 2 out of the 3 prayers, we still received the Eucharist and a glow in the dark rosary. I thanked her in Spanish and she left some religious pamplets.

Dad had stopped by pretty much every day. It was nice, I'd share my lunches with him and once he took a nap in the recliner while I dozed off too. Like father, like son, Coye came to visit after he had gone to a pumpkin patch & brought a baby pumpkin for me which I kept on my table. He was sleepy too & I told him to get the chair with the higher back so he could sleep. We ended up watching a few hours worth of supernatural ghost hunters. Then Joe did the same when he came to visit. Maybe I'm a boring patient. I enjoyed the peace when it came too.

As he was leaving, Joe, Andy and Fred showed up, soon followed by 6 of my coworkers. So I had 9 visitors in my room at one point. My room was right across from the nurses' station. How did this happen? Security gave the 3 guys passes and told my coworkers to wait. When no one was looking, they took the employee elevators to my unit. The clerk told them that they'd have to wait while the other 3 visitors were in the room. As soon as she stepped away, they ran around the nurses station and into my room and closed the door. We didn't get in trouble, my nurses were pretty cool. Also, 2 nurses on my unit knew 2 of my coworkers. After the guys left and they brought my dinner tray, my coworkers used the pull sheet and lifted me higher in the bed. I wish I had my camera at that moment. It pays to know people.

You think with all this modern technology, they'd have a way to remove tape, all kinds, from the skin. From tegaderms to silk tapes to whatever anchored that foley in place, OOOOOWIE! Give me that "margarita" concoction again before it gets taken off. That alone made my hair grow, fall out and grow again. The adhesive remover didn't seem to do much. I thought that since I'm female and half Asian maybe I didn't have as much body hair, but that tape grasped anything resembling a hair follicle in it's vicinity and held on for dear life. After removing the foley fastener from my thigh, the glue was still there even after bathing, using alcohol, lotion and adhesive remover. The recliners in the room are leather and my thigh would get stuck to it. Wonderful, especially when my bowels kicked in rather quickly. Not only was I moving, I was sprinting and maneuvering my IV pole and compression boots too. I ended up going commando the rest of the stay, and sat on chux. That was one less hindrance in getting to the bathroom and less laundry that'd have to be done when I got home. Besides that, with the edema, it was too tight in the elastic areas. Jenny mentioned the "granny-panties" and they sounded better to me. Also having moist towelettes that are flushable, I use the unscented with aloe, come in VERY handy, especially in the bathroom.

As I was getting better, a nurse helped me shower, hair and all. It felt good. My family had brought back some toiletries, a brush, real shampoo and conditioner, lotion, my Dove sensitive skin soap and my rug and cell phone. I caught up on calls and a lot of the staff was interested in the rug, bringing some good memories or showing them a new hobby. I was glad I could work on it, my wrists weren't as sore.

One night, Jenny came to visit, and I was in severe back pain. I broke down and tried the oral morphine. It made me sleepy and Jenny said I had rosy cheeks. I was looking forward to the mac-n-cheese but the pain trumped that. I broke down crying because Gabe had gotten me to walk around the nurses station a few days before that and I didn't have to pause as often. I felt I was going forward in my healing but then I was taking a step back. The nurse held my shoulder and as most of the staff did, they prayed for me, with me and shared their stories of loved ones, coworkers, or themselves going through their health struggles. They were able to reheat my dinner for me later when I felt better, but was sleepy. I did get some forkfuls in after the pain subsided and Jenny got me to stroll around the nurses station. My dayshift nurse got me around it earlier in the day but my pain was starting to hit me then, it was in the center and right side of my abdomen, where the cancerous liver still resides and I took several times to pause on our stroll. With Jenny I still had to pause but not as much. She took me to the end of a hallway, after making it around the station, before returning me back to bed, then when I got comfortable, bowels were calling. Figures. Or when my docs come to check the pump, I have to go ASAP. Hey, it flushes my shunt and stimulates my elimination.

My last day, Odette came with her mom to visit when they said I could go home. Dad was having a lunch date with Joan in the northwest suburbs. Odette said she could take me home, but I didn't have clothes to go home with nor a house key. Then lo' and behold, my bro' Joe, came around the curtain. He had a house key. We called dad back and informed him that he didn't have to rush back. Joe helped me pack up while Odette and her mom ran to Target, sorry Dave, and were able to get me some clothes. They went on a good day, they got a sweat shirt and pants for only $5.00 and some warm slippers. The nurse had another admission then she took care of my discharge papers. They provided us with a wheelchair. Odette's mom waited with me by the front door while Joe and Odette brought the packages to the car and brought the car around. Vera, my onc NP, happened to be in the lobby and she told me to skip my appt. for Monday and to call to see them again in about a week or two. While I was in the hospital, she, Maria the onc nurse and Dr. Mehta, my oncologist came to see me. That's why I like that oncology dept., they're so caring with big hearts.

I made it home and laid out on the couch. I was swollen from my waist down, which I was told by surgery, would go away with time. I was to continue with the Clindamycin, Lasix, stool softeners, pain meds and to keep pumping my Denver shunt. Luckily I have a little mole on my belly that's a landmark to find it, a little balloon beneath my skin. So I have a little gross trick, I pump the balloon and you can see it pulse in my neck. It does flow but to prevent it from getting clogged with proteins I should pump it several times an hour. Getting up and moving should also decrease the edema, watch my salt intake and watch out for signs of infection.

I want to thank everyone who took care of me @ UIC, from escort, house-keeping, nurses, techs, to the doctors, dietary, etc.. I also want to thank everyone who came to visit, called, prayed, assisted me when I was weak, brought magazines and flowers, shared their time with me, combed/brushed and braided my hair, brought goodies, held my hand, brought smiles, hugs and kisses, dozed when I dozed, helped me bathe, encouraged me to eat, to hang in there and to get my butt up and move and not to be afraid to ask for pain meds or to ask for stronger pain meds. Sorry if I may have been crabby @ times, I'm sure it's due to pain and lack of sleep but I really do appreciate you, my cheerleaders. Love you all.

Thursday, October 21, 2010

Saturday, October 16, 2010

Hospital Visit

I was able to visit Jessie today at the hospital with my wife Mia.

While I wasn't able to see her right after the surgery last Tuesday, she was still in ICU today, but appears to be better. She was able to get around on her own power, and go to the bathroom unassisted.

We chatted for a couple of hours. While we were there, the nurse came in and carried out an order to stop administering her IV.

At least now, if she has to go to the bathroom, she doesn't have to be tethered to an IV.

She is still very sore from the operation; I would be too if I had 16-gauge needle stuck to my wrist, and various incisions still tender and just healing.

Overall, she had an appetite, and wanted to eat some Garrett's popcorn that Paul brought by the other day.

Judy and Kathy came by later, and at that point, we had left.

As far as I understood, there was no word yet however on the plan to move forward with cancer treatments (i.e. should chemo treatment continue? other options?).

Thanks to Judy, I was able to post the video montage that was presented at the benefit.

Wednesday, October 13, 2010

Surgery Update from Paul

Going into surgery today, the docs planned to …

· Remove the left lobe of the liver

· radiate the tumors in the right lobe of the liver

· put in a shunt to prevent fluid build up

After opening her up this afternoon, they just put in a shunt and closed her up. They did not remove the left lobe and they did not radiate the tumors in the right lobe.

She will be in ICU for 2 days and then in the hospital for an additional 5 days.

I hope to speak with the docs and my father to get next steps on her treatments.

As soon as I know more, I will share.

Love to all.


Tuesday, October 12, 2010

An update on Jessica's Surgery. Thanks Jane and Eric for the information:

Info from Jessica's phone texts:

Jessica is on 7 West in Room 722B. She will have surgery tomorrow (Oct 13th) in the A.M. She's not sure what time.

Surgery Prep

Not sure if she's going to be able to blog at all this week, so I'm relaying some updates I received from the family:


BTW – she was admitted for surgery prep this morning. She is at UIC, in the Walter Payton Pavilion liver unit. Just prep work today, no news on when they will do the scope. (The scope is prior to the surgery.)


Sunday, October 10, 2010

Pain, pain, go away

Friday October 8th, 2010

All day it was pretty much that. I hate when I wake up, or am ready for a meal and starving, then I try to eat a little something and the next thing I know I'm having is severe pain in my back or abdomen & it makes me short of breath. GRRRR! I have to run to the heating pad & recliner, try to remember the last time I took a pain med, usually it's past my 6 hour mark, take one and stay in the chair, moaning, trying to get comfortable, trying to slow down my breathing until it passes. Sometimes it takes about a half an hour to subside. Dad has been kind and makes meals, but by the time I can eat it, it's cold. I'm still doing the small midnight snacks, sometimes one snack isn't enough. I'm trying to sleep and my stomach is craving "FEED ME!" I can't sleep if it's harassing me enough. Then it's the past midnight bowel cleansing. I'm still sore in my backside but if I'm passing stool, I'm glad, but that too can be several trips.

I'm also taking my Lasix, once a day, but I'm not urinating as much as I should be. I hope my belly doesn't swell and I'll be uncomfortable on Sunday. I want to enjoy the party. Why? Melissa the surgical NP called and said that they'd like for me to be admitted now on Tuesday @7am. They want to drain my abdomen that day, and surgery could be Wed. or Thurs. or next wk. I'll have to verify this come Mon. So if you don't hear from me, you know where I'll be.

Saturday October 9th, 2010

I had more energy today and a craving for ice cream, now that I can eat it. We only have scrapings of Neopolitan and butter pecan. Oh, well. I was expecting my friend, Malaika, to come by with another friend but she ended up getting sick. I hope to get some of your famous lasagna when you feel better or even after my surgery. Things to look forward to. For some reason that happens quite often to people who want to come visit, they or their kids get sick the day before. Don't feel bad if you're unable to come by, get healthy first.

Another friend, Nancy came by. She must've been reading my stomach because she had bought several single servings of a variety of Haagen Daas (sp?) ice cream. Their cute, tasty and they come with their own little spoons. FYI, I ate the chocolate chocolate chip one later in the evening. :o) It was so good, I not only polished it off but I was so excited to eat it, a chunk flew out & I got my upper arm, my dress and the arm of the recliner. I'm still a messy eater, I ate a salad for lunch and got dressing on my dress.

Don't feel guilty if you're hesitant about seeing or talking to me because of my diagnosis. I knew it'd be hard on her, her mom had passed away because of cancer, and there's another close friend of ours, who's dad also died from cancer. It took a while for him to see me too. I'm living not just for myself, I'm fighting this because of you, my family, friends, coworkers, & my patients. You bring so much to my life, life wouldn't be life without you. You helped me become who I am today. Yes, animals, reading, good food, fun times, beautiful weather, smiles, good & bad movies (I know how much Lisa & Fred loved my Rat Race recommendation), good alcohol (when I used to dabble in it), travelling,etc., it adds to life. Again, I'm a simple person, relationships are what matter to me. Being there for each other, at some point, as long as you make it known or not known, as difficult as it may be, don't worry, I understand, I've done it myself. This is a very hard situation to deal with and everyone has their way of dealing with it. I was the same way with our uncle, which I regret. I was so scared to even talk to him because I wanted to remember him in his healthier times. He was in another state when he went through his pancreatic cancer and I could've flown down to see him or even called, but I didn't. I couldn't find the courage or words to let him know how I felt. I really regret not doing anything, but I learned NOT to be afraid to tell someone you love them, especially when they're suffering, even if they're confused and not remember it later. I hope he's up there, in his Hawaiian shirt, with our mom, brother and other relatives and that he forgave me. Nancy also gave me some tips to think about to prevent family squabbles, JUST IN CASE, a good hospice program, which is the one our sister-in-law works for, Rainbow Hospice, some eating recommendations, and a few other things. I appreciate you coming by today. P.S. the flowers are lovely, thanks girl, and thanks for the tickets for the raffle.

I was still in a decent mood when she left. I had taken my pain med around 3 pm and it was making me sleepy, unfortunately my back was still cramping, but Jenny & Marie took me to get our nails done and my face waxed so I won't look like Wolfman Jack later today. My toes are a dark red with glitter and smiley faces and I chose clear fingernail polish so they won't have to remove the pretty paint job come surgery time for putting the pulse oximeter on my finger. At least I was able to get out and enjoy the remnants of the 86 degree weather today. It's 86 degrees outside, but I'm inside & I'm eating ice cream & popsicles while resting my back on a heating pad.

I normally get out Thank You cards ASAP but I'm a little slow lately, forgive me. I appreciate all the cards, well wishes, words of encouragement, hugs, kisses, back rubs, money, food, gifts that you sent or brought over, telephone calls, pictures, parties or just helping me and my family out.

As you can see, I woke up around 1:15 am Sunday and took a pain med and a snack. It's about 3:30 am and my back cramping is finally subsiding, thank goodness for heating pads, pillows and pain meds. I'm still having pain with my BM's but I got the proctofoam which Vera prescribed. I hope it does shrink the swelling and heal whatever is that's going on down & back there. I finally tried the product not too long ago. FYI, it's hard to aim the nozzle in an area where the moon doesn't shine. It did sting a bit at first but that pain went away. I hope the foam doesn't leave a mess in my panties. I'm not sure how much I sprayed back there either.

I'm starting to get a bit sleepy again. I'll try and get some shut eye, if not, I'm on row 30 of my rug. I'm a little more than half way done with it. It's coming along. Good night for now. I hope to see you all later today. LOVE EWE! :o)

Thursday, October 7, 2010

Tune up

Tuesday October 5th, 2010

Judy picked me up and brought me to the oncology clinic. I was feeling yucky and had some pain going on in my abd. I had found the rice krispie treats that Paul had made and brought some with along with an Ensure. Judy has also brought some snacks. I waited until AFTER my labs were drawn to eat, I wanted to see what a somewhat fasting sugar level was, I had a strawberry yogurt @ 3am. My level was 125.

They put us in a room with 2 recliners and a shared bathroom. It turned out that my platelets were way low and that I needed a transfusion and they were talking about admitting me but we waited for the rest of the labs to come back in case I needed anything else corrected and if there were more abnormalities, I'd be staying for sure. I was already feeling a little "full" in my belly and remembered how much I was affected by the 2 units of red blood cells. I has asked if I needed Lasix IV, but they said to just take my Lasix tablet when I got home. I also told them how I'm having problems with my bowels and they gave me what was labelled mineral oil but it was a thick white solution. It was NASTY tasting and thick but if it corrects my bowel problems, I'll give it a try. My back was still giving me problems & Judy started to give me a massage. It must've helped because I was able to eliminate from below which also relieved some of the pressure I was having.

I ended up sharing the room with a lady that I had shared a room with before. We shared stories of what our bodies were going through since we last saw each other and wished each other well. Judy snuck out and got us lunch. It takes a while to get blood products. They had prepped me with Tylenol 500 mg and Benadryl 50 mg to prevent any possible reactions with the platelet infusion. I was only able to eat 1/4 th of my sandwich and a few chips. I had already downed one of the K. treats and Ensure earlier. I worked on my rug and got quite a bit done. Judy was catching up on the soap operas finding out who's who from my roommate. I was tired from the Benadryl, but I don't think I slept. The platelets, which are a thick dark yellow product, finally finished around 4:30 pm. Wow, I couldn't believe we were there the whole day. I was able to go home, after getting some refills on my meds and I was actually feeling better. They kept my portacath accessed with the Huber needle in case I needed a 2nd transfusion the following day. I was to come back to the onc. clinic to recheck my platelets, if they were too low, I'd get the 2nd bag, and that might have delayed me getting tapped.

Gabe literally did a "drive by". He came to see me but by then my treatment was done and we were heading out of the parking garage. He met us outside and we found a pay lot across the street. He parked next to Judy and we chatted for a while. His aunt just and another surgery on her foot and he was also on his way to see her as well @ another hospital.

On the way to and from the hospital, Judy & I had some tearful conversations. We made it home and Judy transferred the wheelchair to our dad's car, smart move. She didn't stay for dinner and went back home to her family. Dad had made CHICKEN ADOBO for dinner. Oh, the salt will get me but I will and did suffer for my supper. I love food but this dish is one at the top of my list. I took my Lasix but I don't think it helped. I barely slept and had gotten really short of breath with my belly being so large. My legs felt heavy too when I climbed the stairs to get into the house and even my shirts hurt the area between my ribcage, the area was so tender and stretched.

Wednesday October 6th, 2010

I couldn't wait until my 9am appts. and got dressed around 6:30 am, I don't think I slept. I had moved my bowels, but I strained and got extremely short of breath with back pain. David massaged my back while dad got ready ASAP, took his meds and ate something for breakfast. I was hungry too but just couldn't get my air in I was very swollen in my abdomen. I packed some fruit, soda and extra snacks for later. We got in the car and the shortness of breath started to decrease, sitting up, reclining the seat, whatever it took.

We arrived early and again, I'm glad Judy had already put the wheelchair in dad's car, one less thing we had to do. At the onc clinic Maria used my port to get the lab which saved me a poke in the arm. We got the results from Vera. The platelet count went up to 53 from 23, the day before and we discussed (gonna get personal now) the possibility of me having an anal fissure & not a hemorrhoid. I hope not. I think I have enough problems thus far. Vera wrote for a different topical foam to try back there. Will I have a "moussey" butt? Just thinking, if it's a foam, like hair mousse, how messy is it going to get for my panties? Either way, Walgreens carries the spray but they'll have to order the foam form.

Dad & I skee-daddled over the bridge to the liver clinic where I had to wait for a room to be available in order to get tapped. I was hungry and ate a K. treat and drank an Ensure. I waddled to the bathroom to urinate, I felt that I had to go more but if that's all, I couldn't force it. I waddled back to my wheelchair but the shortness of breath and back pain kicked in. Dad woke from his nap and started to rub my back. Maybe the staff saw my distress and finally got a room for me in the back. Diane assisted me into the bed and helped me recline, I have to be flat for this procedure and again, I was looking forward to being drained, big needles, ticklish pain, weird "sucking" sensations on my insides and all. That final big "pop" with the big needle, meaning the drain is in, is a relief. Dr. Lam, he likes to be called "Way", put the needle in a spot that was kind of tickling as it was draining but I remembered that I had to be relaxed for it to flow properly. As I was able to get my breath back, I was getting sleepy. They drained another 4.6 liters. The nurse trained with portacaths wasn't there that day and they had to start an IV on me and got it on the 2nd try. They gave me a bag of albumin and I dozed while I received that. The usual right back pain and shortness of breath didn't hit me. Maybe I was lucky this time. Reinalda took out the IV but couldn't take the portacath access out. So dad & I made our way back to the onc. clinic, across the street, to get it done.

Vera came and got me from the lobby. She checked my backside for hemorrhoids but she said it wasn't one and to get that foam. She removed the Huber needle too. We discussed more tests prior to surgery. I told her how I still have to contact the surgical NP to confirm the surgery date but I think the anesthesiology NP already did.

We got home & I was tired and slept for about an hour on the couch. I woke to have lunch and the back and abdominal pain and shortness of breath post-procedure found me. ET says, "OUCH!" I quickly took a Tramadol and climbed into the recliner with the heating pad. It took about a half hour but the symptoms subsided. I started by eating an apple then dad made some Ramen noodles. I was able to eat both without pain. Good, 'cuz I felt like Starvin Marvin from South Park.

Joyce & Maya stopped by later with a heated massage pad for the chair for me to try and more Ensure. The pad massages your thighs too = tickles your bum, which I don't have. I'm looking for back fat and other fat donations @ the gathering. It was good to see J&M. I got to see Maya in her school uniform. Cute. I had called Jenny while she was out & about to see if she could pick up some slippers that I can wear socks with, I can't find the ones I brought. Joyce was going to leave me her shoes. She even checked her car but she only had the one pair of shoes. Jenny hadn't gotten my call until she got home but she had a pair here already.

Jenny helped me take a good shower, which rejuvenates me, poops me out, but refreshing none-the-less. Gnarly bed head, go bye, bye.

Thursday October 7th, 2010

I slept around 11pm, woke @ 1am, ate a yogurt, took another pain med and fell asleep again. I woke briefly to see Marie & Jenny off to work and school, respectively. Then went back to sleep until around 9:30 am. I was starving and worried. Where was dad? He's ususally up and about, dressed and in the garden. Tita Lory was already up too. She said that he's still in the bed. I ran in there to check on him AND he was sleeping. WHEW! He said he had gotten up around 3am and was up for a while. I quickly took a pain med and we had breakfast. My back pain was creeping up on me so I ran to my haven, the recliner with the heating pad. I tried working on my electronic address book and was upset that after several entries and I hit the "SAVE" button that nothing saved. GRRR!

I called and left a message for Melissa, the surgical NP, to verify things for next week because my family wants to schedule days off to be there for me and their work schedules. Adam's grandma, Cherie, came by around 11 am and gave me a hair cut. It needed it. Then she saw our dad in the driveway & trimmed him too. Thank you Cherie. I can finally eat ice cream so I had a cup of that with an Ensure poured on top. It was good, but I think I'll stick with milk in my ice cream. My friend, Jenny, came by around noon, to visit and drop papers off for the gathering on Sunday. By then my pain meds were kicking in my sleep mode and Jens had to take care of her dog & pick up her son.

I was too tired to eat lunch. WHAT!?! Believe it or not. I zonked out on the couch for a couple of hours and nibbled on a pear. Yvonne called from the surgical office and let me know that I'm scheduled to be admitted on 10-14, they'll drain my abdomen and I'll be in the hospital during the "staging" process up until the surgery, where they're going to determine further testing and watch me. Then they'll get a better idea what's going to happen and give more details with their findings and then an actual date for the procedure.

Cathy stopped by & brought a special coccyx pad for my bottom. Thank you. I'm starting to get hungry so I'll let you go for now. I hope I don't bore you on my "catch up" blogs. They can be quite long.

We have someone close to us in the hospital, Jenny, battling pnuemonia, can you please send some good vibes and prayers in her direction. Thanks. I'm going to deal with this abdominal pain & try & get some food into me. Good night.

Monday, October 4, 2010

Oh, bloody heck

Saturday October 2nd, 2010

Woo-wie! I've been dealing with really bad cramping back pain. Not much relief from my Tramadol nor heating pad. Couch to recliner and back again, ugh! With each breath the pain clicked in the left side of my back.

Later in the day we celebrated our sister, Judy, and 2 of our brother's, Coye and David, birthdays. I'll hopefully be recuperating (meaning not the other thought no one wants to think about) from my surgery when their b-days arrive. I broke down and had a slice of pizza and chicken, no skin. Hey, my sodium was still low the last lab I checked. :o) It's hard to balance my diet, meds, the Allopurinol for the high uric acid level and to drink plenty of fluids with it, and being on Lasix so the ascites hopefully won't build up as quickly. I wish I was in a better partying mode. I did make it to the table for food and cake. They were kind and opened their presents in the living room where I was laid up on the recliner. Jenny, Marie and I gave Judy a "Thindy Brady" card, David got the "Robot" card that played Mr. Roboto and Coye got the "Roosevelt Franklin" card from Sesame Street. Sometimes we can't find Dave, he got a camouflage Snuggie. I felt and looked like the Hunchback of Notre Dame, except he might be better looking. :o) Joan had massaged my back earlier with some relief. It was the left side that was still getting me. Before Judy left, she worked a few knots out of my back which really helped. Thank goodness she worked in that chiropractor's office and studied it. Relief probably could've happened a lot sooner if I wasn't so ticklish. I'd take the laughter and tickle for a few seconds of relief from the pain. She made me feel so good, I slept until about 1am. Woke up then and couldn't sleep until 5am. I had the munchies so I had more Greek yogurt, half a donut and a peach throughout the night. Eat while I can and I worked on my rug. I also watched "Super Size Me (?)" that movie where the guy ate McDonald's for a month and it had other interesting fattening facts.

Sunday October 3rd, 2010

Ate a little breakfast and I really have to watch how I say things and not hurt anyone. Going through this cancer journey is ROUGH AND STRESSFUL at times, not just for me, but for others in the family too. I know they're doing the best to help me while trying to work and maintain households and sometimes I say or do things that are uncalled for or come out the wrong way. Using the Cancer Card is NOT an excuse. I'm really sorry for those times. Two words, hemorrhoid treatments. We're the VEGA family and as dad said, "We're going to get through this together, we take care of each other." I know some people want to think everything is rosy, but this is real life. There's so much emotionally and it could be the extremes: worry, hope, fear, happiness, etc., but our love, patience, forgiveness, faith, etc., for each other will carry us through. Caregivers really need some care and relief themselves. No one is Superman or Superwoman. I really appreciate all you do for me, again, sorry if I go off the handle. Counseling?

Blood is thicker than water, except mine, it's running thin and I'm dealing with nosebleeds for the past few days. I'll call my nurse practitioner tomorrow if this persists. Not only that, my hemorrhoid is still bleeding at times even though I'm using the hemorrhoid ointment and I started using the Preparation H suppository my cousin recommended that helped hers. 20 years ago we'd have discussions on who our favorite Duran Duran member was, now we're discussing which hemorrhoid treatment works better. I found out today that another suggestion is one with hydrocortisone in it, thanks Malaika for that advice and other things we discussed. Love you.

Lisa and her parents came to pick me up for a couple of hours. I hadn't seen her aunt in a LOOONG time. She had been sick herself and I wanted to let her know how I wanted to be there for her too but I'm going through my own health issues They had a hard time trying to figure out when, what or how to tell her. I wanted her to know in case anything should happen to me and she wouldn't be struck out of the blue. She had recently celebrated her birthday and she looks better than I do and is getting around better too. Lisa had told her earlier in the day about my cancer. I had gotten her aunt a card and flowers @ the Jewel by their home. Paul had told Lisa to get me moving when she came to get me. My family wondered if I was going to spend the night. I had brought my pillow with the heating pad, one for my bottom, my "bowel bag" in case I should need the baby wipes and other goodies, and finally my purse. It's so good to see her parents, it's been a LOOONG time since I had seen them too. I did get exercise, I pushed the grocery cart around Jewel and I had to climb the stairs in their home. I used to climb them with no problem, now it took a while for me to get to one floor, one step at a time. I had climbed our basement steps earlier in the day too. Lisa had shown me the flowers that she grew in her garden, such a variety and very pretty, I think my dad has competition. I got to see Hairy and Widdo's sister, Coco, and Mr. Nacho. Still as cute as ever. We went upstairs for dinner, and I got to see her aunt, after all these months. After dinner we all hugged and took pictures, I'm inspired by Lisa's family too. If they can go through the multiple surgeries, survive and keep going, I plan on doing the same. We watched "Valentine's Day", it was a pretty good movie, funny, serious, & cute. Lisa and her mom dropped me off later, the traffic heading south was horrendous, but we gave her a dose of Funfetti cake in case traffic was still bad. Thank you for a nice evening. My family had a break from me and got to watch the Bears lose. Wah! I finally slept well for once. I went to bed around 2 am and woke about 6:30 ish. 4 hours of straight sleep is good.

Monday October 4th, 2010

Our Tita Lory is arriving today from the Philippines, we hadn't seen her since earlier this year for her bi-annual visit. Today wasn't a "feel good" day like the day before. I was having the back and abdominal pain, but it didn't stop me from eating breakfast. Not to gross you out, but at least I'm moving my bowels 2-3 times a day and do you realize how good that can make one feel? However, it's still painful and I'm bleeding from my "behinds". I had used the Preparation H suppositories and am taking my pain meds at least twice a day. I did get up and helped dad put away the groceries around lunch time. I felt very weak today, tried to work on my rug but kept dozing on & off. I did eat lunch but my belly felt "full", gas? My heartrate was high but my BP was decent, 112/70's. I know I should take my Lasix which I did. I'm also drinking cranberry juice to hopefully help me pee. I was told to watch my glucose and I had bought some unsweetened tea the day before. I'm able to drink stuff from the fridge but I haven't ventured into the freezer yet. I still get the painful tingling in my fingertips with extremely cold items, including the weather, like yesterday, I had to wear my gloves. Dad had found some flavored Greek yogurt, we tried the blueberry and it is yummy, I might have a date with the strawberry one later. Charles said he brought more goodies by the house, I'll have to find them too. His wife gave me good suggestions on my cracked hands from all the washing I'm doing, and also some ideas that helped her relax during her exacerbations and some weight gaining foods.

I finally got up again from my on & off slumber around 6pm. The heating pad wasn't helping much but I wanted to get ready for our aunt's arrival. I also had made plans for a coworker to come by to help me with work computer things, things I'd like to "straighten out" before surgery. I was putting away my clothes in a drawer when a bloody Niagara Falls started from my right nostril. How about that? I was not even bending or straining and now this. Great, our sister just got home with Chinese food. Now I'm hungry, bloated, & bleeding. It hadn't bled since last night. I know my platelets go down with the chemo but this was a bit much. I had eaten with Kleenex jammed in my right nostril, then I looked up Allopurinol's side effects and paged my nurse practitioner. I hadn't taken today's dose yet. The bleeding finally died down after a huge clot came out and I had put more Kleenex inside and left it for a while. Our aunt arrived just as the bleeding was dying down and it completely stopped by the time my coworker showed up with his wife and daughter, who LOVES dogs, especially scared Chihuahuas. Vera called back and we agreed to hold the Allopurinol, then I'd come in to get a "rainbow" of labs tomorrow morning. More poking but if it'll reveal that I need some more corrections of abnormal labs, I'm all for it. Also, I'm supposed to get tapped on Wed. but if I receive fluids, she wants Dr. Lam contacted in case I might need that tomorrow as well. I was also told not to use anymore suppositories but topical creams for now. I'm still learning "Do's and Don't's" as each new symptom pops up.

I'll be sharing the living room with Auntie, she prays at night and also has jet lag. We're perfect roommates. We do have a bed for her but she says she sleeps better in the recliner. It's good to see her, she's looking better than I too. She brought a lot of goodies from the Philippines, different candies that's a treat because you receive them so rarely. Maybe this insomniac will sleep for a while, I might have another long day tomorrow, or should I say, later today. My eyelids are getting heavy, I'll take advantage of it. Good night.

Saturday, October 2, 2010

Heating pad = new best friend

Wednesday, September 29th, 2010

Dad and I went in to the liver clinic to see if I needed my abdomen tapped, which I did, and they got out another 3.3 liters. My dad & I FINALLY brought the wheelchair and pillows along with the foot rests. I also received some Kayexalate for my elevated potassium level from Monday's labs. That's a thick brown liquid medication that I've given multiple times to patients. It smells like butterscotch, but to me, it tastes like grainy bananas. My level was 5.7 which was slightly elevated, but none the less, your labs have to be within certain parameters otherwise it can wreck havoc on your body if they're too high or low. My abdomen has really been sore where the liver meets the ribs after leaving the liver clinic which makes me short of breath again. I've been supporting the area with a pillow and the heat makes it feel better too. Dad has been missing his workouts but he's getting it when he takes me to my appts. pushing me up the ramps and getting my wheelchair in & out of the car. When we got home, I was able to eat a sandwich and dad had picked up some Greek vanilla yogurt, I believe it's called Chobani, which has twice the protein of regular yogurt. Our sister-in-law-recommended it, it's pretty tasty. I took a Tramadol and rested. My appetite usually gets better after I get drained, which is a good thing. Tuesday I couldn't eat much.

I'm still dealing with my hemorrhoid, the lactulose is making it a little easier to move my bowels, it's the passing part that hurts and not to gross you out, still bleeds occassionally. Unscented baby wipes with aloe, Tucks, gloves, and I put a liner in my panties to avoid any potential messes are my new regimen. If I'm not having pain from my back or liver, it's in my butt. So if you call me and I'm sleeping feel free to talk to anyone in my family for an update. Again, I'm not sleeping too well at night and if I can catch some shut eye during the day, please understand if I can't talk or have long conversations. I do love hearing from you though, especially on good days, I catch up on some phone calls. Your words of encouragement comfort me and just knowing you're thinking of me or just listening to my woes, I'm grateful for.

Thursday September 30th, 2010

I called my nurse practitioner about the Kayexalate. She told me not to take anymore, UIC's "high" level is 5.5 and the dose I took the night before, plus the Lasix I'm on would bring it back down. She recommended that I come in on Friday to check the lab to make sure we're on the right track.

I've been working on my latch hook rug, it really takes my mind off the discomfort and it gives my arms and hands a workout. I have to follow a complicated pattern too which I hope is stimulating my mind to some degree. I really got scared the last time the peripheral neuropathy hit me and I couldn't control my arms after my 2nd dose of Eloxatin. I guess it makes me glad that I have control for now and that's reassuring after not being in control of other parts of my body.

Jenny came home from work and helped me again with a good shower. It really makes me feel better and wipes me out, it's a big exercise for me. Seeing the mass of hair clumps in the garbage doesn't help, hopefully I'll still have some hair by the time of the party. She did a great job at getting my big tangles out without cutting my hair. Lots of conditioner, a comb with big teeth and patience. Any suggestions on how to wear hair so it DOESN'T get all gnarly? She also washes my back which feels great. Paul had come by during the week and out of the blue, he asked, "Do you want a spray tan? I'll pay for it?" I'm thinking it do not want to look orange like Snooki from Jersey Shore. Jenny asked if I can get my hair dyed, our neighbor wouldn't mind doing it and giving me a hair cut. It's been months since I last did anything to my hair.

We dined on spaghetti that night, Oh do I miss having that. I'm gentle on the sauce but then again, my sodium was low. It's good to have labs to justify my eating.

Friday October 1st, 2010

I woke with severe abdominal pain and was only able to take in an Ensure. I also took a Tramadol and then dad took me to get my labs rechecked in the oncology clinic. I took 2 pillows, one to sit on and a bigger one for my belly. He dropped me off @ the front door of the clinic so we didn't have to hassle with the wheelchair. I had my potassium level checked and Vera put more labs on, to check other things. It's a good thing she did. My potassium is actually within normal range but on the low side, but we found out that my uric acid level is high. She said it could be due to cell lysing = dying and that I have to flush out my system with fluids. We changed my meds yet again, hold the lactulose, start mineral oil, start Allopurinol and continue the lasix and tramadol. We were told that the pharmacist was going to bring us the meds. We waiting until 1:20pm. By then we were starving and my pain meds were making me sleepy but some abdominal discomfort was still there. Luckily I had been put in an exam room and dozed on the exam table. Finally I got up and went to pharmacy, it was sitting there and I was a bit peeved. Vera was surprised to see me still there and expedited me, she also gave me a copy of my labs.

I know dad was hungry and I treated him to I-Hop. I ate some pancakes with strawberries, bananas and whipped cream on top, most of an egg and I deserved to eat some hash browns with ketchup. Since I was told that I should push some liquids I drank some orange juice and milk. I was extremely thirsty and the water I was taking in wasn't enough. Dad ate a good portion of his omelete and pancakes too. By now I was really tired, my stomach still ached even though I had my pillow resting on it in the restaurant and I was feeling woosy. The barometric pressure outside I know was going to change and the Tramadol sometimes makes me woosy too.

We then hit Walgreens for a heating pad, the mineral oil, I need a dose of gossip magazines, and I found some pudding. I was very upset when I had my vitals taken @ the clinic, my weight had gone down to 126 lbs. Again I started crying. Vera had reminded me that I had gotten drained and that was about 4 lbs. Any tips of foods to put weight on? Please share. I'd eat more if I didn't get full of fluid @ times and short of breath or if this pain wasn't in my abdominal region. Then again, I'm on meds that make me urinate like a racehorse and I get tapped, I'm also losing fluid. It's hard trying to balance everything. Now I have to watch my glucose which has been slightly elevated since this whole cancer thing started. I was told to finish off all my Ensures, then I'll be switched to Glucerna. I hope it tastes the same as Ensure, believe it or not, I actually like the taste of Ensure. While we were in Walgreens, I had to hang on to the cart for support. It was good seeing Cathy and her coworkers, but my woosiness was exaggerated by all the people moving around and my pain was bad so I was hunched over the cart. Boy aren't I a pretty site for sore eyes. I had pushed the cart outside while dad got the car. I'm so glad he's in better shape than I. He's doing all the lifting. I thank him for all he does for me.

We got home, I'm glad David was here to help him. David helped me take my Allopurinol, it's a big pill and he helped split it and I drank more water. Also I can't get into my meds half the time, they're pretty much "Jessie-proof". Either I'm that weak, I have trouble opening water bottles too, but even @ work I'd have a hard time opening certain medicine containers. Dad suggested that I condense my meds, since they keep changing all the time to just keeping the current ones out & hiding the others especially since we have people coming over all the time. It'll be simpler too in case I have to go to a hospital again and carry only 3 meds instead of 10 plus = less confusing. After doing that, I pretty much passed out on the couch for 3 hours. I missed Marie's volleyball game which I heard they won, it was close, a real nail-biter. I woke around 7:30 pm. We had pot pies for dinner and I ate a pudding. I pulled out my heating pad and it has a nice affect on my back, it took away my pain and I passed out again until 1am. Now here I'm up with all the other insomniacs. I've eaten a small bagel with cream cheese and had more yogurt with liquids. I also took another Tramadol. I've been sitting in the recliner, while blogging, leaning forward to get some of the pressure off my back which I had been putting on it all day by sleeping. Thanks to my family who help me with the simple things, every day.

I'll see if I can get some shut eye. Thanks for putting up with me not blogging every day. If anything should happen to me, I'm sure my family would find a way to let you all know. I know people get concerned when I don't write, I'm sorry for scaring you. I don't mean to, I just have my good and bad days. If you hear from me, please pass the word on that I'm still hanging in there. I wish there was a cascade network to let you all know how I'm doing. Take care. :o)