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.

Paul

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

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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:

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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.)

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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)

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.

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.

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)