Full day I am wiped out

We watched the Defenders last night (I am sure it will be canceled) and Rob went up during the news. I finished Nurse Jackie last night - I am so sad that I am done with season 1 and that I will have to wait for season 2 - Weeds is up next - I think it is relative (sort of). Slept well again - I think I am in a good place with sleep - I am scared that Dr. Marsh isn't going to refill my ativan though - I have been on it for almost 5 months and it is only supposed to be a short term drug.
Ellie was up super early followed by Rob and Nick but Nick stayed in our room and finger tortured me and pulled my eyelids back repeatedly asking if I was ready to get up yet.
I got the kids clothing ready and headed downstairs - Rob had packed Ellie's lunch and they were ready to go to the bus stop. I had my bowl of coffee and checked my email - Nick brought me in the newspaper to read. Rob and Nick went outside to play - I took a shower and got dressed and joined them outside. We picked up sticks that had fallen from the tree - these will be turned into hocus pocus wands for the Halloween party. I called to place my initial ostomy order this morning - the samples I had been given are running low and was told that they would need to verify with my surgeon that I had an ileostomy and then I would need to request a referral from my general doctor for ileostomy supplies - seriously? So, the rep took my order but who knows when I will get it - I am frustrated with the system. I did some laundry, made myself a bagel and was off for my appointment with Patricia. I left plenty of time for all the construction but I wasn't prepared for the massive Oakton street detour and the freight train - I still made it relatively on time.
I told Patricia sleep was better but I was having lower back pain - I told her about our bad couch and pillows and how I think I might have been walking or sitting weird to compensate for the ileostomy pain. I laid on my left side for my session today and Patricia concentrated on my back but said she didn't feel any tight or hard spots. Patricia also said my body wasn't sending our flags that I had just had major surgery and that I must have a very healthy diet - I didn't have the ability to communicate my new anti-oxidant rich diet and just said that I try, it has just been a bit harder with the ileostomy. Patricia also addressed my usual areas on my feet and legs and behind my ear. It felt so good - she put the warming lamp by my back and turned the lights low - I really wished I could have given into sleep but it was still so relaxing. After my session Patricia answered some of my questions - how big are lymph nodes - about the size of a pea or smaller. If she knew anything about comfrey root and back pain - she didn't but said whatever works is great. I stopped by the store and picked up some more staphysagria and arnica.
I drove home hoping the detour would be gone but no such luck - had to go way out of the way. I had friends coming over for a visit - I babysat for Meg and Terese when I was in high school and college and now their kids are in high school and college. We had a great visit - I got updates on all the kids and it is so nice to hear that they are all happy in what they are doing. We had some good laughs before they had to leave. Mom and Tony came over (told you it was a full day) because our dear friend Margaret is leaving for LA tomorrow and was coming by to say goodbye. Jo stopped by after work but was tired and Nick wasn't sharing his toys with Tony - so they didn't stay long and went home.
Margaret and Kate came by and we had a wonderful visit - some good hospital laughs and just dumb people laughs. Margaret filled us in on her recent moving adventures. We are very sad to see her leave but wish her luck on her new adventure. Christi and Catherine came by with dinner for us - thanks. I asked Mom to stay for dinner and she called Dad to join us. Rob gave the kids baths - icky, gross smelling kids. Dad came as Kate and Margaret were leaving - he got to give Marg a hug too.
We had a nice dinner together with so many choices - Nick and Ellie were both looking forward to the pink cupcakes and ice cream for dessert. Nick made his own concoction up - taking the frosting and sprinkles from the cupcake and mixing it in with the ice cream and creaming them together. Mom and Dad said goodnight and the kids and Rob went up for bed - its been a while so I am not sure but think Rob might have fallen asleep with them.
I talked to my best friend nurse, Margaret today - I wanted to get the skinny on the port procedure and also schedule my appointment with Dr. Marsh. I opted to just schedule my Dr. Marsh appointment and discuss the whole next phase before scheduling the port. I am doing pretty well other than the back pain when I sit. Visualising my healthy body, my continued healthy recovery and the new normal me - whomever that shall be, Tree

Stoma fixed - check!

Rob and I watched Parenthood and a portion of the news before I sent him up to bed. I started watching Great Outdoors - love John Candy but ended up slipping Nurse Jackie in and watching a couple episodes - only 2 left from season 1 then I will have to find a new show. We all slept well - with the new bedtime regime - Ellie actually slept in and needed a wake up call this morning. I think she is growing (again - well actually continually) Rob made her 2 bagels and sausages for breakfast. It was supposed to be warmer today so we were able to be back in t-shirts and capris today. Rob took Ellie to the bus and I watched Curious George with Nick.
We had a quiet morning - watched some tv and did some cleaning up. Rob burnt a batch of popcorn for Nick and the smell never dissipated - it still stinks. I have opened windows, lit candles, sprayed the rugs, sprayed the curtains - Mom microwaved vinegar - nothing has helped the long term smell issue. My home health nurse came to "discharge" me - imagine that - my insurance won't pay for her to come out and take my vitals - all she has done. Although, today she became a complete idiot in my books when she asked to see my incision - I pulled up my shirt and showed her the top incision - she was shocked - she had absolutely no idea my surgery was laproscoptic robotic and she thought my incision went breastbone to navel. She then asked what type of ostomy I had - hello she has access to all my info - things she should know. Finally, she asked about my butt - if I had any incisions there or sores. I explained once again that I had laproscopic robotic surgery and then told her the only time I had sores was with radiation - thanks for your help with my vitals but bye-bye. I got to catch up with my girlfriend Lee for a bit over the phone.
The exterminator came over (again) because the stupid little black ants are all over our back room (they were just out a little over a week ago to do our quarterly treatment). The guy was nice enough and whatever he sprayed did kill all the ants that were walking. He also put up moth traps and sprayed outside. Mom came over and we all had lunch together - got rid of most of our leftovers. Nick was invited to a play date at Su'nana's house - Rob took him over and Mom and I went to meet Jen at the hospital.
Jen came and met us and we went up to her exam room. I peeled off my old wafer - which wasn't entirely painful today and the area that was a hot red mess on Sunday wasn't so bad today. It was still red and irritated but looked better. Jen showed me how stoma powder works - looks like talc powder but doesn't leave a residue - she sprinkled it on and then blew off the excess. In between powder applications she tapped this magical barrier wipe on top that locks in the powder - she did about 3 applications before we applied the wafer. Good news - I am healing because my stoma finally went down in size - I am now 1 1/8" - Jen thinks I will probably get to an 1". We tried out the convex wafer with a wax ring but when I sat up my stoma still snuck back in - so now I am sporting a fashionable elastic belt - it puts light pressure on the sides on the wafer "pulling" my stoma out. I asked Jen her opinion about reversal surgery sooner than later - she said to ask Dr. Muldoon but she would not rush it. We thanked Jen and went for Starbucks.
Rob was home when we got back but Nick was still at Christi's playing. Mom and I took advantage of kid free zone and read through magazines. I got a couple ideas for the school Halloween party. Rob went to pick-up Nick and get Ellie from the bus. Ellie did her homework quickly and was promptly outside playing. Jo called to say hi and to let Mom know she had her peppers - every fall for the past few years Mom has ordered a huge bag (like the 25# onion sack bag) of red peppers from Jo's boss. We went out to meet Jo and our pepper bag - can't wait until the weekend to roast peppers. Mom went home and I hit the couch for nap time.
I woke up in time to have a quick bite to eat before heading to curriculum night at school. Our neighbors were nice enough to bring over dinner again - so Rob and the kids were set. I got to say thanks face to face to Ms. Doolas and Mrs. Bart. I got to sit at Ellie's desk and look around at her work - then I learned about all she will experience this year - so much. I came home and Rob was getting the kids ready for bed - he took Nick up and Ellie and I cuddled on the couch.
I am so happy that I don't have some gross infection or that the irritation didn't get worse. I am feeling pretty good other than that - still a bit of arm pain (and believe it or not still a bruise). I go to see Patricia tomorrow - I wonder if there is a point for stoma healing? Visualising my healthy body, my continued healthy recovery and the new normal me - whomever that shall be, Tree

Exhaustion caught up to me today

Rob watched the Bears game last night and stayed awake until they won. I watched Jay and then watched some old Julia Stiles film on encore - went up sometime after midnight. Pretty shortly after I got upstairs I heard footsteps and then felt a tiny hand tapping me - I got Nick back to sleep. I think he was cold because he woke up again around 4:30 and didn't got back to sleep until about an hour later when I finally pulled him into bed with us. The problem with this arrangement is that Nick is a kicker and around 7:00 he began kicking my stomach - even when I turned the other way he was still able to get my side - I eventually asked him if he was ready to go downstairs. I got Ellie's clothes together (plus a change of clothes in case she fell in a mud puddle on the field trip). Rob and Ellie packed their lunches together and Rob walked her to the bus stop.
Rob left a bit after 9:00 to head to school to chaperone Ellie's field trip. They went to Somme woods to remove buckthorne trees which harm oak trees. Rob got the whole experience - riding on the bus with 60 3rd graders, meeting Ellie's classmates (the good and the bad), eating lunch with them - he had a good time. I guess they found several sets of bones (snakes or other small animals), a couple of frogs, some slugs and other bugs. They made leaf print t-shirts and had their picnic lunch.
Nick and I went to Mom's and we went shopping at Big Lots - nothing real great there. We went to Wendy's for lunch and Nick ate everything - guess it was an eating day. We went back to Mom's and I was pooped. I called Rob to make sure he was going to get Ellie off the bus and to Girls on the Run - he said he would - I told him I was taking a nap at Mom's. We went out on the sun porch where the sun was powerful. I quickly fell asleep on the couch and must have slept soundly because I woke up with a completely dry mouth. Nick and I got our stuff together and said bye to Mom and went home. My ileostomy is burning me today - which means that it is probably raw underneath the adhesive again. I received the convex wafers today and we meet with Jen tomorrow - I just hope the solution is quick and relatively painless.
I picked Ellie up from school - I almost didn't recognize her - she is getting so tall and is changing from my little girl. We came home and did some of her homework before she joined Rob and Nick outside to play and I hit the couch. The kids were having so much fun outside - I could here the screams and the games through the house. I did a bit of straightening up - the shoes were spilling into the living room from the closet and started to pose a fall risk - which led to me going through the kitchen cabinets - don't ask. Rob gave Nick a bath while I began dinner - Ellie took a quick shower and then came down and helped with dinner. We ate dinner together - Nick was nuts he was dipping everything on his plate into his apple juice and eating it. We tried something different tonight -Rob took Nick upstairs for bed while Ellie stayed down here for a bit longer - I think it worked out pretty well.
I don't think I have shared my strict diet I have started - it consists mostly of chocolate, cinnamon and wine - it is extremely rich in anti-oxidants. Don't go calling the dietitian - I am eating as much of a balanced diet as I can - it is just tough - chocolate, cinnamon and wine seem to always taste good and make me happy. Visualising my healthy body, my continued healthy recovery and the new normal me - whomever that shall be, Tree

Laid back Mon day

Rob and I watched our good ole Sunday night dramas - Desperate and Brothers and Sisters but I was disappointed by both and I'll probably give them another week but I think it might be time to move on. I surprised myself - for not having a nap I thought I would be up with Rob at 10 - but I stayed up until 11:45. Another good night of sleep - woohoo for sleep being pain free. Ellie was up early, then Rob - Nick slept in a bit with me. I got Ellie's clothes for her and Rob was walking her out to the bus.
Nick and Rob went on an adventure today - a couple parks and a visit with Aunt Pam. I got a call back from Jen who thinks that it is probably a leak related problem - the area under my stoma is "valley" like and is lower compared to the top - so she was going to the the company to overnight me some convex wafers and I will meet with her Wednesday and she will help change me out. Jen didn't seem too concerned - which both put me at ease and worried me - isn't red, painful skin something to be alarmed about? I also got an email back from Dr. Muldoon - I forget if I mentioned it last night but one of my incisions sites is bulging and slightly painful - in his email he said that was fine and to contact him if is became red or oozed - once again slightly annoyed he wasn't more interested.
Mom came over and we watched a bit of morning tv before heading out for a shopping adventure. We went to Bath & Body - picked up a couple new room diffusers - all mine seem to have stopped working. The new eucalyptus mint is very nice - Rob even commented that he wouldn't mind hanging out in the bathroom now. The fall smells were sort of gross. We also did grocery shopping while we were out. Somehow produce shopping isn't the same anymore - I was totally not inspired to get any produce but my family lives on it - Nick survives on it. We came home and had lunch together. We watched food tv and cuddled up on the couch - keeping each other warm.
Rob and Nick came home just in time to get Ellie off the bus. Ellie came in and started her homework and Nick went a little nuts - not sure if he is getting sick or he just needs more sleep but he was moody. Mom left and the kids went out to play with the neighbors. Rob's birthday iPod came today and our computer refused to even open it without downloading the newest versions of itunes and quicktime - took forever. Rob kept coming down to check the status and then he'd go back outside to check the kid status.
Finally, the updates came through and I loaded his iPod up. I started dinner - Ellie has been asking for my alfredo sauce for months - I finally made good on my promise and made it tonight. Rob gave the kids their bath and got their pj's on. We had a nice dinner together - Ellie made individually whipped cream topped strawberries for dessert. The kiddos had their vitamins and medicines and made their way upstairs for reading time and bed. I am watching Dancing - I don't like this season yet - I guess I might just be under-whelmed by tv in general.
I spent the day walking with my had lightly putting pressure on my stoma - it dull s the actual pain and I can stand straight up then. My shoulder blade pain is still there - I traded pillows on the couch - we will see if that makes a difference. Rob is chaperoning Ellie's field trip tomorrow - I am excited for the both of them - it just completes his list of things to do while at home trying to be me. Visualising my healthy body, my continued healthy recovery and the new normal me - whomever that shall be, Tree

Tired and in pain

Rob went up early and I watched Saturday Night Live - it was ok. Had a wonderful night of sleep and slept in once again. Rob and Ellie went to church this morning while Nick and I hung out in our pajamas. When Rob and Ellie got home we got dressed and the kids played outside for a bit. We had lunch before getting ready for the church bike a thon - the kids were very excited.
We headed off to Glenview and the kids registered and got their numbers. Rob walked along with Nick as he rode and Ellie just cruised by herself. I got to visit with a number of friends during the bike a thon. Ellie ended up riding 7 miles and Nick 2.5 miles - we are proud of both of them. They went and had their ice cream treat while Rob and I talked to some more friends. We eventually got moving home - it had been a long day and the sun was very hidden in the clouds and it was getting cold. We stopped by our house to pick up some things and stopped by Baskin Robbins for an ice cream cake for Rob's birthday.
We got to Mom's and the house smelled good - Rob had requested ribs, corn pudding and salad for his dinner - Mom added smashed cauliflower, mashed potatoes, apple sauce, honeydew and baked beans to the menu. Nick had close to 4 servings of corn pudding and I enjoyed the mashed potatoes. I think we were all stuffed before dessert came out but that didn't stop anyone. Mint chip chocolate cake roll and homemade donuts - yum.
I bought all my supplies for Mom and I to change out by bag - so Mom and I went to do that. I have been having pain the past couple days and just thought it was normal but when I peeled away the wafer it was apparent there was nothing normal happening. From 3 to 9 o'clock (the entire bottom under my stoma) is red and almost blistered in appearance - it hurt to touch it. We had no choice other than to apply a new wafer but I really wasn't looking forward to it. I promised Mom I would put a call into Jen about it - which I did as soon as we got home. I don't know if I am allergic to the adhesive or the wax barrier or if it is just irritated but it is definitely not happy. I did a bit of googling and it doesn't look like there is a quick heal or solution to this - a lot of people talk about trial and error in trying different products from different vendors. Mom also noticed one of my incision areas was lumpy - so she put a tight band-aid on it.
I was feeling so good about my recovery but right now I am un-happy and in pain. I finally gave in to advil - the first time in over a week. Tomorrow is another day and I will hopefully have some answers and an easier time moving about. Visualising my healthy body, my continued healthy recovery (fingers crossed) and the new normal me - whomever that shall be, Tree

Non stop Fun

Stayed up and watched Oprah - interesting views on education. I slept well - wonderful to have a new pillow. Rob snatched the kids up this morning and I got to sleep in. I called Jo and asked if she wanted to rummage with us - she agreed to a couple. I got the kids dressed and took a shower and Jo and Tony came over just as we were about ready. We hit the boy scout sale - picked up some card games and shrinky dinks - Nick really tried to talk me into this 4' long fire truck - saying he really needed it. We lucked out at the multiples sale - Jo and I both left with a bag of clothing and a couple toys. We headed back home as Jo, T and Ole were headed to Milwaukee for the rest of the day.
We picked up Rob and headed to the kids bank - they were having a back to school picnic. The truck they had was half golf cart half roach coach. They had hot dogs, chips, the most ginormous chocolate chip cookies and juice. We had lunch and went inside to make the kids deposit - they earned their free ice cream scoops today. We then went to Ellie's school for the back to school fun fair - lots of carnival games and jumpers. Nick quickly found his girlfriend and they "jumped" together while Ellie played games and won tickets. In the end we were able to turn in our tickets for 2 balls, a small car, a smaller car and 2 bracelets - just what we needed here.
We came home and dropped Ellie and Rob off - they had daddy daughter plans - mini golf and ice cream. Nick and I tried to visit Mom and Dad but they weren't home so we decided to cruise past a couple yard sales. No big finds - just a plastic golf set for Nick. We came home and watched some cartoons and Rob and Ellie came home just a bit later. I tried my hardest to take a nap but I could not warm up enough - it was a brisk fall day. I finally put socks on and two blankets and tried my hardest to warm up. Rob took the kids over to Aunt Carrie's to try to help her out with a plumbing issue and I guess I warmed up enough to fall asleep sometime after they left. While I slept - they returned home and Mom and Dad swooped by and grand-napped the kids. I woke up around 6:00 and yelled out hi but Rob was the only one who answered. We had the dinner the neighbors sent over yesterday and talked for a bit before heading to Mom and Dad's to pick up the kids. They were just getting dinner when we arrived and we talked while they ate and finished watching some weird Japanese cartoon - by the same people who made Ponyo that they loved.
The kids were getting their second wind when we looked at the clock and decided to go home. Rob worked to get them ready for bed and I have to say work because of that second wind. So, the supplement update - nothing significant noticed beside the tummy noises. I did kind of gag on them tonight - as I said I am not a pill taker and having to take that many - even in a couple gulps is still gross. I surprised myself at how long I was able to keep up my energy - now I know. The bottom of my stoma hurts today - Mom was having sympathy pain for me. A couple more tape strips peeled off - I don't think the scars are going to be bad at all. I have mid back pain again - I am once again blaming the couch. Full day again tomorrow - I don't think I am ready for church yet - maybe next weekend but its Rob's birthday tomorrow and we will celebrate all day. Visualising my healthy body, my continued healthy recovery and the new normal me - whomever that shall be, Tree

Another adventurous day

Rob stayed up for a bit with me last night to watch the last episode of Nurse Jackie - he magically got the dvd to play. I stayed up for another hour or so - this seems to be what I need to sleep better (less overall time in bed and asleep but higher quality sleep). Somehow, sometime over the course of the night Nick ended up next to me in bed and Rob was on the floor - Nick slept sideways with his head on my shoulder. Ellie woke up first - way too early and Rob next, Nick woke up for a little bit but I was able to convince him to close his eyes some more. I got up shortly before Ellie needed to leave for the bus but Nick slept in until 8:30. Rob got Ellie off to the bus and I enjoyed some coffee. We had big plans for the day.
We began at a local rummage sale where I usually leave with bags full of goodies - one bag today but that is okay. We then went to get Nick's haircut - he was such a good boy and listened to Ms. Yvonne when she told him to looks this way or hold still - he looks so handsome. We then headed to Kohl's - Rob and I really needed new pillows and they were on sale today. I was able to pick up a couple fall tops of clearance (I could probably wear my regular tops but I am bit self conscious about the ileostomy bag - it sticks out a bit and I feel right sided pregnant) so I got a couple of the wider tunic tops. We stopped at Trader Joe's and picked up some groceries - Nick was so happy that they had a mini cart - he likes to shop.
We had lunch when we got home and then Rob and Nick went downstairs to play with some of the new rummage finds and give me a chance to take a nap. Our neighbors dropped off dinner while I napped - thanks. Nick and Rob walked down to pick Ellie up from the bus stop and they went outside to play. Rob and I got to visit with our neighbor, Angie, while the kids played out front. I ended up coming in with Nick - while the kids almost always play nice together - Nick is 5 years younger and sometimes needs to play alone. We watched some tv and had a snack - later he helped me make brownies - chocolate is still the food of choice. We were all hungry so I popped a frozen pizza in and cut up some fruit. Rob started a bath for the kids and they got their pj's on. FYI - the cheap 4 cheese frozen pizza from Trader Joe's is really quite good - Ellie insists its the best pizza she ever had.
We decided to go downstairs and see what we could stream from netflix for a mini movie night - we found a couple episodes of Charlie Brown. We enjoyed our hot brownies and milk while watching the video. Rob is getting the kids settled in bed and I am blogging. Aches and pains today are getting a bit better - one of my blisters flaked off - it was the itchiest one. One of the tape sections also peeled off but the stitches are pointy and hard - hopefully a couple showers and they will be gone. My mid-back hurts today - I blame our couch. I started my complete homeopathy regime today - I wanted to give my stomach time to become "normal" before introducing it. I am now taking arnica and staphysagria (3 times a day), a mushroom extract, turmeric extract, vitamin c and vitamin d - I will let you all know tomorrow about the new regime - I took them after dinner and my tummy is making some noise right now. Oh, I also re-started the probiotic today. I took the time and sorted all the pills in a sorter - I knew I would forget something if it wasn't pre-divided. I will also let you know when this all drives me nuts - I am so not a pill taker. Another busy day tomorrow so I am going to go and relax with my glass of wine - hope everyone enjoys this first weekend of fall. Visualising my healthy body, my continued healthy recovery and the new normal me - whomever that shall be, Tree

A bit hot but what a day

Rob and I sat up and each played on our laptops last night - I decided to try my old ways and let Rob go up at 10:00 and I stayed on the couch until midnight - ahhh I remember how to fall asleep now. Our dvd player is being temperamental so I put Nurse Jackie into my laptop and watched a couple episodes before bed - highly entertaining. When I went up to bed I was able to sleep much more easily than I have this past week.
Ellie was up with the sun and Rob went downstairs with her - Nick was up around 7:00 but decided he needed some mommy cuddle time - which was awesome and irritating all at once. I really liked that he is making another step to be back to normal but I really wanted that extra sleep time. Nick and I went downstairs and we had breakfast, I got the kids clothes ready and Rob made Ellie her sandwich while I got the rest of her lunch together. Rob and Nick walked Ellie to the bus while I enjoyed my bowl of coffee.
Nick watched a movie while I watched some tv before we left for my appointment with Patricia. I drove - without my butt pillow (since May I have had to have this 4" high density foam pillow to sit upon in the car - my butt no longer hurts) to Park Center - I dropped Nick and Rob off at the park and checked in for my appointment. Patricia came and got me and she went right to business. She asked what was bothering me - I said sleep was still an issue - so she addressed that as well as digestion and specifically worked my chi. Patricia put in some new ear seeds and got to work on my points - I so wish I would've fallen asleep - I tired but I did relax. When she came back at the end she showed me how to massage my stomach - not so much a massage as indirect pressure to aid in healing. She looked at my bruised up arms and quickly rubbed them in with arnica oil - I honestly think it has already started to break up more. It was quite a relaxing time and then I picked up Rob and Nick.
We introduced Rob to Via Gelato - we had a scoop of gelato as a snack to cool off - Nick went against his normal orange flavor and opted for red velvet cake. We headed towards home - we were meeting Christi and Su'nana at the park for a play date. I enjoyed some sunlight vitamin D therapy until the sun got way too intense and I needed to seek the shade. Rob played with the kids so Christi and I could do some more catching up. We spent about an hour at the park before I needed to put my feet up - it was already way more activity than I have had in a day. I took a nap on the couch while Rob took Nick downstairs for some playtime. I slept right through Ellie coming home and heading back out to Run. I woke up and talked to Mom until Rob and the kids came home. I helped Ellie out with homework before the kids disappeared outside to play. We have a scary situation happening around here right now - there have been 3 attempted abductions on children in the past couple weeks - one was just a few blocks away.
Everyone came in for bath time and dinner - we had re-heats from last night with the special request of cinnamon toast. We went downstairs for movie time - the kids started a movie last night and had the second half to finish. Bedtime was quicker than usual - I think the kids were tired. I am sitting on the couch typing and have Gray's Anatomy on in the background - I couldn't watch the season finale last spring - all medical dramas were too close to home for me. My shoulders are bugging me a bit right now - I have the hot pad on them. A couple of my incisions are pulling and Nick kind of pushed on a couple cuddling throughout the day. My stoma feels better today - it doesn't have the same pain as last night. Visualising my healthy body, my continued healthy recovery and the new normal me - whomever that shall be, Tree

I'm healing - I can feel the pull

Rob and I stayed up to watch Parenthood last night - I highly recommend it to any parent (kids age doesn't matter). I thought I was tired - I was slightly wrong - another toss and tumble night in bed - I just cannot get comfortable. We were all awake early - so early, in fact, that I took my inaugural car ride to the bakery for some chocolate. Nick drove with me to pick out his breakfast - a sprinkle donut and we loaded up on a box of chocolately goodness. When we got home Rob said Dr. Muldoon's office had tried to call (it was only 7:30AM)m - just needed to push my appointment time back a bit. We all enjoyed our bakery goods and Rob made Ellie her lunch while I got clothing ready. Rob and Nick walked Ellie to the bus while I laid on the couch.
Christi was coming over for coffee this morning - so Rob and Nick had a boy morning - going to Home Depot and several parks. Christi came over and we caught up on girl time - I have really missed our time together. Rob and Nick came home just as Christi was leaving - I got to hear all about the parks and how they ran into Uncle Bill and the GG's. We had our lunch together and then Nick and Rob went outside for some more playing. I took a nap and was real into it - I woke up and had the string of spit attached from my mouth to the pillow. Unfortunately, I wasn't really ready to be up but the FedEx man rang the doorbell and that was it.
Today I can feel all sorts of tugs and pulling on my stomach - a sure sign of healing but it hurts. My blisters have dried out and are starting to itch. The tape is still attached to each of the incisions - a couple more showers and that will hopefully fall off. My ileostomy stoma kind of hurt today, too. I can't explain it other than it felt like it had a sharp edge stabbing into me.
Rob, Nick and I took our daily walk around the block - I think I can increase a bit more tomorrow - it didn't completely send me to the couch today. Rob and Nick got Ellie off the bus and I helped her out with her homework. Ellie had an apple for snack and I took one of the pieces (probably 1/8 of an apple without the skin) - I think it worked out fine. The kids went out to play with the neighbors and I watched some tv - its a difficult life I lead right now. My friend, Kelly, called to check in - great to talk to her and catch up.
Mom came over for family dinner and brought dinner makings - a delicious chicken stir fry with some buttered noodles and homemade applesauce - cantaloupe (I didn't risk it). Dinner was enjoyed by all of us - everyone had a clean plate - the kids tried the molten brownies Mom brought with for dessert. Rob started a bath for our very dirty kids and I asked Mom to check on my ileostomy to see if something looked wrong. We decided to change it out - it didn't feel so great. It is irritated and bleeding a little bit, a bit swollen. Thanks Mom for your help - can't do it without you. Mom left to head home - even though Dad isn't home she insist on watching Criminal Minds tonight - alone. Rob got the kids to sleep and I took up on the couch with the computer and a glass of wine.
I have an early appointment with Patricia tomorrow and I am hoping she can locate some points for the things bothering me. Visualising my healthy body, my continued healthy recovery and the new normal me - whomever that shall be, Tree

Sunny Tuesday

Rob did make it back downstairs last night - even gave me a shoulder massage. I watched Dancing with the Stars and then we watched some crappy something on HGTV before deciding to call it a day - premature for me. I watched the clock for an hour before becoming sleepy enough to sleep. I think our house was too warm last night which caused a bunch of twisting and turning and not a great night of sleep. I have been neglectful - my Mom's neighbor Katherine made us a couple dinners that she sent home with us on Sunday and we have been enjoying them - thanks.
Nick and I woke up around 7:45 and went downstairs to join Ellie and Rob. I was re-introduced to my long lost friend, coffee this morning - tasted so good. Nick and Rob walked Ellie to the bus while I made myself breakfast. I was feeling energetic and did a few loads of laundry this morning - all this talk about beg bugs got me going a bit nuts and I washed all our throw pillows today. I took a shower in my own shower with the water burning hot and it felt so good. Agnes (the clinical research nurse for Dr. Muldoon) called me this morning just to check in and verify everything has been staying down and to let me know when I need to schedule my follow up appointment (October 10th). Rob took Nick outside to play this morning and I think they took every toy out to play with.
My BFF, Christi, stopped by with a container full of all sorts of chocolates to quench my craving. We got to visit for a bit before she needed to pick up Su'nana. Rob, Nick and I had lunch together - Nick dictating where we should all sit. After lunch we took a walk - the sunshine felt so good today - a bit hot directly but when the breeze came it was quite nice. We walked a bit further today and down to the park - Nick played nicely with another little boy there. We made our way back home and I was ready for a nap - which I took. I woke up in time for Ellie to come off the bus - it was Run day today so she had a snack and changed before Rob brought her back to school. I was able to schedule an appointment with Patricia on Thursday morning - so looking forward to it.
Nick and Rob went to the school park and played while Ellie was running and then they came home and played with the neighbors. Rob picked up dinner for us - I have been craving Portillos french fries - ironically - I can now have the worst diet in the world and it is actually the best diet for me. I am so missing fresh fruit and veggies - I was salivating cutting up a red pepper for Nick today - one of these days I might just have to give in and see how much I might regret it. We had dinner and a treat from my chocolate box and awaited the huge storm - but it still hasn't even drizzled here - lots of thunder and some lightening.
The kids and I watched an episode of Blue's Clues (about going to preschool) and then Rob took the kids up to bed. I am enjoying a glass of vino and my hot pad on my shoulders. Ok- for those who respect me and think highly of me and never want to ruin that image this is where you should conclude reading for this evening - for those of you who want a mini haha and mini gross out continue.
So, Mom and I changed my ileostomy bag last night - I told you that last night. We were proud of ourselves - everything seemed right - but I had to call Mom about an hour after she went home because I had something to share that we needed to incorporate the next time we changed out the bag - closing it. I went to the washroom and thought it was strange that it seemed to be diminishing right before my eyes only to realize we had never locked it into place and it was draining right before my eyes. Mom and I shared a huge laugh and I am quite sure it will be a good laugh for Jennifer when I talk to her. Good thing was it was kinked before I got the washroom and didn't make a hideous mess. Second haha/gross out - my ileostomy passes gas and I have absolutely no control of it. It is not like normal gas traveling through your body that you can decide to pass or excuse yourself to another room - this just comes out and I know it will be another one of those things I will have to deal with - humiliating though - I guess the redeeming part is that it doesn't have an odor - just a sound.
I was productive today and feel good about that - even able to schedule an appointment for Nick to get his haircut. I am trying to space things out and not do too much - we have a weekend of fun things to do and I want to be able to participate in at least a couple of them. Visualising my healthy body, my continued healthy recovery and the new normal me - whomever that shall be (apparently, for a while it will be passive gas passing), Tree

Monday and life's back

Last night I sat on the sofa waiting for Rob to come down from putting the kids to sleep. I watched Food Truck Race on Food network and thought it was strange that Rob hadn't come down yet but thought maybe Nick thought he was missing something - but no, Rob feel asleep with Nick and never came down. I watched tv until 10:00 and then tried to go up to sleep. I didn't know how the stairs were going to go - I hadn't walked them in over a week - but I gripped the handrail and took it slow and made it to the top. I even was able to step over the gate at the top of the stairs - getting into bed was a bit tricky - we have a rather tall bed and I did have to stretch to get in but it was so worth it. I think it was the quickest I have gone to sleep in a week - felt so good to be on our mattress and have my own pillow again.
This morning, Rob went downstairs with the kids and I slept in until a bit after 8:00. I went downstairs and found that not only Rob and Nick were in the back room but Ellie, too. Ellie's post nasal drip has made its first appearance since school started and Rob had called her into school. We had a laid back morning - all of us cuddled up on the couch. After breakfast I took a nap - I get sleepy about 30-60 minutes after I eat. Rob took the kids downstairs for a project - it kept them entertained about the length of my nap. After I woke up we tried to take a walk outside but as soon as we got about 25 feet from the door the rain drops began.
Rob made a lunch run for us and gave Nick a bath to clean all the paint project residue off of him. By the time lunch rolled around Ellie was bored with being home sick and was desperate for activity. We tried a walk again and we were able to make it up the block and back again. We had a short visit with our neighbor before heading inside. I received an email back from Dr. Muldoon regarding my pathology - he apparently shared the info with me earlier in the week but it must have been one of my wacky days. The specimen did indeed have cancer cells as well as 7 of the 44 lymph nodes that were removed. This being said we will definitely proceed with the post-operative chemotherapy - this stupid cancer was aggressive and didn't die like everyone though it had.
The heating pad has helped to break up the massive bruising on my right arm but it still quite sore. My shoulders and neck are also still sore - that might take a few treatments from Patricia to straighten out. I took a little afternoon siesta while Rob put in a movie for the kids. I called Mom to find out if she wanted to join us for dinner - Dad is out of town this whole week - she agreed to come over. Ellie was very upset that Nick got to go outside to play and she did not and couldn't understand how we could establish such rules - drama queen in the making. We had a nice dinner together before Mom and I tried our first ileostomy change by ourselves - we think it turned out well. I did realize that I need to tune down the nerves around the ileostomy though because the wafer that is adhesive attached to me hurts quite a bit when it is being peeled off. Hopefully, when my incisions heal and my blisters (I ended up with a few blisters and we think they were from the tape during surgery) go away the pulling won't hurt so much.
Rob took the kids up to bed and I am watching the new Dancing with the Stars - so excited to have entertaining tv again. I think there will be a bakery run in my future tomorrow - chocolate is one of those things that has been lacking in my diet. Other than that - I am feeling well, I don't think my stomach holds as much as it used to - I fill up quickly. I am hoping Rob makes it down tonight but I understand his exhaustion catching up to him. Visualising my healthy body and my continued healthy recovery and the new normal me - whoever that shall be, Tree

Home Sweet Home

Hello family and friends - it's me, Theresa, I am back. I will be honest this post will be a bunch of babble this evening because the past week or so has been surreal. I thank Mom for keeping up with my blog - I know she had issues with what or what not to share but I couldn't have asked for a better guest blogger.
Katie (my favorite surgical resident) was on today and I met her with a huge smile (very prepared to beg for discharge - if necessary) and she agreed today sounded like a good plan but Dr. Baker (Dr. Muldoon's partner) would have to make the final call. In anticipation for discharge today I asked Rob to bring my clothing last night and as soon as Katie said she would talk to Dr. Baker I was pleading for the remainder of my IV to come out so I could shower normally. For the past week when I shower I have had to had various areas of my body sheeted in plastic and taped in place - doesn't really provide that clean feeling. I had breakfast and watched some tv before the doctors/residents finally rounded around 10:00 AM - they agreed to discharge me - WOOHOO! Except nothing is speedy and they had to complete their rounds before everything would be entered in the computer - delays, delays, delays - it was over an hour later before Grace came in to pull the IV. I had left Rob a message to swing by after church because I was ready to go.
I was so looking forward to my shower but by the time I got into the shower apparently a lot of others on the floor had also done so because the water wasn't all so hot. I got to put on clothing for the first time in over a week - feels good yet odd. I guess my clothing choices will be changing - I have to have room for the ileostomy - so yoga pants work well. I am quite sure I will be self conscious of my bag for a while - over the last 18 months I was able to lose 60 pounds and really felt good about my body but now I look like I am half pregnant with an alien. I am sure I will find my groove and I am happy we are entering autumn and sweater and layers are in fashion.
Rob and the kids came to get me and everyone looked so happy today. We waited for the transporter to arrive to wheel me out to the car - they said I could walk but I didn't know how far that truly was and I didn't feel like being wonderwoman today.
We got in the car and I turned my iPod to Dynamite - it has become our theme song - for those not familiar the chorus is - I throw my hands up in the air sometimes saying ayo gotta let go, I wanna celebrate and live my life saying ayo baby let's go. It is just a feel good song and I didn't know this until today but often when Rob and the kids would leave the hospital they would hear the song on the way home and dance. It was nice to have the whole family there as a bonding moment. The drive home was weird - I haven't been outside in over 10 days - to feel the sunlight and the fresh air was incredible. When we pulled up to the house there was a huge banner with well wishes staked in the ground - my big girl Ellie arranged this all by herself. I have made it almost a week without tearing up - my Mom's blog entries sometimes made me cry but I haven't in a while now but they returned today.
I made myself a PB&J and stretched out on the couch and was soon fast asleep. I slept for hours with the familiar background noises of my children screaming as a tranquil reminder of what I have been missing out on. Nick came in quite a few times to kiss me - I love it - in the hospital he has been a bit standoffish - I love that he feels comfortable again. Ellie has been wonderful anticipating my needs for water or blankets and Rob - how can I even say all he has done this past week, months. I was just saying the other day when you say your vows and do the sickness and health vow you picture yourself at 80 - 34 definitely was not in my mind.
I woke up and we went over to Mom's for Sunday dinner - I wasn't missing out again. We celebrated my being sprung and Jo's birthday. We had homemade mac and cheese and applesauce - I was really craving the cantaloupe and cucumber salad - this is going to be real hard for me. We had a funfetti cake for dessert and then the kids went out with Dad to make smores. We headed home and I got reacquainted with my laptop and Rob gave the kids baths.
I am very sore today - not sure what is up with that - I haven't had any sort of pain meds (not even advil or tylenol) since Tuesday. The heparin shots hurt today and the top of my legs feel like swiss cheese. My right arm where they tried to insert the PICC line is extremely sore - I have the hot pad on it right now and it does seem to be helping. Finally, my abdomen just hurts - I think it is probably healing and pulling and I just feel slow. I will have a visiting nurse - not sure how long but maybe a couple visits. I have my follow up with Dr. Muldoon in a couple weeks - I left him a message today because no one has told me anything about pathology yet.
One of the things I definitely realized this past week was how homeopathy or alternative medicine isn't main stream at all. I asked more than once if I could start taking my arnica and staphysagria and was told someone would get back to me - still waiting. You should have seen the faces of the people who stopped in while I was getting my acupuncture session the other day - Molly said she was sure most have never seen that before. I can't wait to schedule some appointments with Patricia - she will be back from her vacation on Tuesday. I think I have rattled on enough - I can't focus any longer - getting sleepy.
Visualising my healthy body, my continued speedy recovery and the new normal me - whatever that shall be, Tree

Mission Impossible

This post almost existed only in my head. Our main computer crashed today. I'm using our laptop, but finding lots of brick walls trying to sign in to Theresa's blog space. After lots of frustrations, I'm here! It's very late. I'll keep this brief. Things are looking good for Theresa's discharge tomorrow. She moved on to low residue solids today and everything has stayed with her. She's had an assortment of food including grilled cheese and pasta...really big deals considering this past week. Rob took the kids to a birthday party this morning. It was at Chuck E Cheese and the kids were pumped when it was over. Rob dropped them off here while he ran errands. They joined Jo and Tony who were already here. We all headed out in Gram's van to get lunch. Sweet Tomatoes it was. Nick ate his weight in cornbread and fruit, Tony loves his cheese and noodles, Ellie loved being the runner for anything anyone needed, and she loved making her own salad at the salad bar. Of course, the mini soft serve cones with sprinkles were the big hit! From there to Kohl's. Some running clothes for Ellie for her after school program. Some comfy lounge pants for Tree, some slacks for Gary for his trip next week, trucks for the boys and a video camera for me. A true something for everyone spree! We dropped the kids off at home and Rob headed out for a visit with Tree. It was a good visit. Theresa was unplugged from the IV, and went walking with the kids. They've been so anxious to do that with her. Donna, a good friend of Tree and Rob had been up for a visit in the afternoon and had left some Halloween silly bandz for them. Theresa really enjoyed the visit. Rob started the process of bringing things home. By the time Gary and I got up there tonight, Theresa was pretty psyched about getting out tomorrow. There were a few things said today that made her a little fearful that maybe she wouldn't be released tomorrow. I saw a little of her edginess pop up when she informed us that if they don't let her go, she may just walk out on her own...she's so ready to be home! She's also starting to get really tired of tea. We had some good chuckles together and she kicked us out when visiting hours ended. She was tired. She didn't sleep well last night, so hopefully tonight will be a more restful night. Gary and I moved on to Dominick's. We're celebrating Jo's birthday tomorrow since Gary will be away for the official day. I got her favorite foods and a few low residue things just in case Theresa is sprung...that would truly be the frosting on the cake!

If all goes smoothly as planned, Theresa will be writing her own post tomorrow night. So in signing out from my assigned duties, I ask that you join me in visualizing Theresa's healthy body, her continued recovery, and the new normal, happy Theresa, whoever that might be. Adios. Paula

And the Winners Are...Determination and Perseverance

It looks like my days as guest blogger are numbered...OK, I will no longer be required after this weekend. Your original storyteller, Theresa, should be coming home Sunday. I know she'll have a lot to say! Yes, you did read correctly. She should be walking out of Evanston Hospital on Sunday. Over the years, I have watched what Theresa has pulled off through shear determination, focus and perseverance. I like to think she has a little of my genetic legacy that makes us really fight hard when someone tells us we can't do something. There has always been a little pride and a great big cheer when she has shown a teacher, colleague, doctor, employer her na-na-na-na-na-na attitude. Well, she can add one more mountain to her conquered list. Theresa made up her mind last night that she would not have the PICC line inserted today. Her tummy was growling and she was producing all of the sounds and noises that are usually required. Why couldn't she just start this morning with one thing added to her tea regime? Then maybe slowly add one more thing at lunch. See if indeed maybe she had an ileus that resolved itself, and she would now be able to keep food down. The Resident on rounds this morning agreed. If her plan worked, no PICC. So a popsicle with tea at breakfast stayed down. 2 servings of Ensure and tea stayed down for lunch. Looking good! Theresa and I had an appointment for our final training with her ostomy nurse, Jennifer, at 4:00. It was a good session. Her body is doing everything it's supposed to be doing...what they've been waiting and hoping it would do! So, as I sit here typing, I am feeling really proud of Theresa for acting on her feelings, and I do have a little smile on my face. Jo and Tony had come up to the hospital with me to visit with Tree after our training, but everything was cut short to let something wonderful happen. Theresa's BFF nurse in oncology, Margaret, managed to get an acupuncture treatment scheduled for Tree in her room. Molly began to work her healing magic after we left. Theresa called after her treatment and said Molly had done wonders. She even showed Theresa a pressure point for nausea that she can do herself. It was so good to hear Theresa so relaxed and calm. She was gearing up for movie night! My friend Jamee (the one who always makes me feel at ease and a little more sane), sent an edible fruit creation for all of us today. It was lovely and yummy! Rob stopped to load a container with fruit kabobs for movie watching snacks. The kids were very excited about their fruit-on-a-stick snacks. They were very excited about going to spend time together with Mommy. Theresa had ordered them popsicles as well. Rob said it was wonderful. Theresa said it was wonderful. Both kids ended up climbing up into bed with her. Great way to end a great day! Theresa called me to say that she had some oatmeal and tea for dinner. Wasn't terribly hungry, but it did stay with her! One of the Residents I really like came in to tell her that she thought Theresa should add more solids tomorrow and if that goes well, Sunday is looking good for going home! She was really tired, thank you Molly, and was hoping that they'd bring in her meds a little early so she could close her eyes and go to sleep!

That's it for me for tonight. It's been a really long week. I feel confident that I know how to be of help to Theresa when she goes home. She's lost a good deal of weight and Jen said that ostomy patients typically lose about 15 additional pounds. So I've been doing my research looking for recipes I can make that will stay with her requirements, but will maybe keep her weight a little more constant. Edible would be good, too! It's one of the things I think I do well and I'm glad we're close enough that I can help her out. She is a dynamo, superwoman, but she remains my little girl. In closing, please join me in visualizing Theresa's healthy body, continued recovery, good digestion, and a happy new, normal Theresa, whoever that might be. Keep those good, positive thoughts coming....they're working! Thanks, Paula

Paging Dr. House, Dr. Gregory House...

Just in case you're not familiar with the title reference, Dr. House is an egotistical, diagnostic specialist in the TV series, House. No matter how bad off a patient is, no matter how bizarre the symptoms, House fixes those people over the course of one short hour. I want Dr. House to see my girl. Figure out what's wrong with Theresa, give her the super-dooper fix, and send her merrily home! Theresa is still not keeping food down. Today is day 8 without food. Yes, she had her broth and yogurt, but it didn't stay down. She's been on ice chips for several days now. Today they decided that because her protein levels are so low they would start a PICC line for her. PICC (peripherally inserted central catheter) is a form of IV access. A line is routed from arm to heart for feeding. This form of feeding bypasses the usual process of eating and digestion. The hope is to use the line for a few days just to get super nutrients into her. Everything was explained to her this morning and they told her they would run the line today. Once again, only ice chips. This is a lot to wrap your head around, but Theresa is doing it. I had Tony today, so I had Rob leave Nick here with me so he could run up and be with Tree for awhile. Rob said they had good talks and that Tree was actually pretty calm and accepting of this temporary solution. I say temporary because we're still not addressing the heart of the problem...she can't eat. There are lots of things I don't understand. No, I've done my research, I understand the technology and the processes. I don't understand why you would wait until 5:30 to try to run this line (3X) only to decide that radiology will have to do it and they've already closed for the day. So now my poor girl gets to think about this process all evening, night and morning, maybe even afternoon, before she gets fed. The surgeon approved tea, but that's it. She is able to keep liquids down. She's off pain meds, she's walking, the catheter is just a memory now...she's phenomenal. I want her fixed....paging Dr. House!

Theresa is so calm it's incredible. I'm hopping mad, ticked off, spitting fire....she's sitting in bed, sipping tea, watching TV. I know we've been visualizing a new normal Theresa, but I want the aliens to bring back my lil' firecracker! I guess it's good that she is this calm. Peaceful, actually. Hey, if it's the Ativan, good! If it's just that she really does have her head in a good place, even better. The bottom line here is, we want her home to stay. Not to get her home only to find something else has gone wrong and she has to go back. Please let's keep those positive, collective thoughts streaming her way. She's hoping in the morning she can propose that they just let her try adding one thing at a time to her tea ritual. I think the surgeon would probably go along, but he doesn't have the only vote.

Gary and I went up to see her this evening. She looks wonderful. We took her some good tea. Nothing wrong with Lipton, but if it's the only thing you can have, why not make it delicious? So at least now she has a little variety. She said that Rob had taken the kids to a school fun fair and they had a ball. I know that he had planned to either do concessions or take out for dinner. They are planning to have movie night in Theresa's room tomorrow night. She has kid movies on demand, and there are a few that they could all enjoy. Theresa's ostomy nurse said yes when I asked about corn puffs. I don't know if she'll be able to partake, but it's one of those snacks that just about liquefies in your mouth without chewing. We'll see. I thank you all for sending Theresa your good thoughts and wishes. She does feel the love. I personally would like to encourage people to stop using the phrase "it's only a bump in the road". She's been bumping around for a week now. As her Dr. said yesterday, her road is so bumpy, we have to repave it. I know it's something to say when all else fails, but it is discouraging after awhile. Let's see if we can't find more fun and creative ways to wish her well!

I guess writing this tonight has been cathartic for me. I am calmer as I come to the end of my rope, I mean, post. Please join me in visualizing Theresa's healthy body, her working digestive system, speedy recovery, and a new normal, happy Theresa whoever that may be. Visualize her being in her own home, too! Love and thanks to you all. Paula

Arrgghhhh!

I really wanted this post to take on a more positive flavor...sorry, wish it could be so! I was optimistic this morning. Theresa had posted on facebook that she had ordered oatmeal and yogurt for breakfast. WOW...real food! Called her to find out how breakfast was and she told me she wasn't able to keep it down. OK, maybe it was just too much at one time after days of water and tea. I told her I was keeping Nick this morning so that Rob could come up and have some one-on-one time with her. That I would be up this afternoon for that much needed shampoo. She told me she had already made plans to take a shower and shampoo her own hair. The catheter was gone and the nurses were going to help her make it happen. Great! Rob went up and they had a nice visit. He told me she was just so relaxed, and clean! We had lunch when he got back here and he was very upbeat about Tree's progress. She had ordered soup and ice cream for lunch. I called before leaving to find out if she needed anything...she was throwing up lunch. We had our appointment with the ostomy nurse, Jennifer, at 3:00. Maybe I could just get her sipping hot tea again. When I got to her room an old friend, Terese, was visiting. She's a home care nurse and had seen Theresa's name on the board and kind of freaked. I was amazed at how great my Theresa looked. Good color, back to her pleasant smile and getting in and out of bed on her own to pee. Now I haven't been excited about Theresa peeing on the potty since she was 2 years old...I have to tell you, I did do the pee pee dance for her today. We were all surprised when one of the docs came in to tell Theresa that they were going to send her down for a stomach x-ray just to rule out any problem that could be causing the vomiting. Back to nothing by mouth except ice chips. Arrgghhh! Terese left when the ostomy nurse arrived. We had a very productive learning session. I'll go back Friday afternoon for one more session. Theresa was taking care of her own needs all day...she really hit so many milestones today, I hated to see this stomach thing set her back. I stayed with her until almost 6:00 and knew that Joanna would be stopping by. It's Wednesday and that means dinner at the Henderson house for us. Rob had all of the fixings for banana splits and Gary supplied the broasted chicken. We had a nice meal together. After dinner, I helped Ellie finish her Spelling homework and Gary took Nick upstairs for some quality train time. Rob had clean up duty. Theresa called in her good nights to the kids, we shared our hugs and kisses and departed. Theresa posted on FB that she was back from x-ray and I called her to find out how things were going. She didn't know anything yet...still nothing by mouth. She did get an order for Ativan tonight and we have high hopes that she'll sleep. A doc came in and she said she'd call me back. She did. I heard the sadness in her voice as she told me there is an obstruction in her stomach and they were considering inserting a NG (naso-gastric) tube, and if they did, they'd probably have to replace the catheter too. NO! Again someone came in and she told me she'd call me back. So, as of 8:45 this evening, they are going to watch Theresa overnight. If she vomits again they'll insert the tube. She is to continue nothing by mouth. They may do more x-rays or a scan in the morning. Quite honestly, if there is a problem, let's fix it and get this girl out of there. She was looking forward to her shot of Heparin so that she could get her Ativan and try to fall asleep. I told her tomorrow is another day. We'll move forward and do what we have to do in the name of progress. I'm still hoping for that one normal healing day of recovery for her...you can hope for that, too. There were some very good, positive things that went right today, hopefully tomorrow will bring more of the same.

In closing I ask you to join me in visualizing Theresa's healthy body(with a tummy full of good, nutritious food that she can keep down), a smoother road to recovery (we'll keep repaving that bumpy one she's been on), and a new happy, normal Theresa whoever that may be. Thanks. Paula

P.S. For those of you keeping track, the surgeon was able to use the colon ring in Theresa's surgery. Although approved by the FDA, it's still in trial runs. It is supposed to make for better healing. Let's hope.

Can this kid catch a break?

I was hoping to at least give you a few quotes from Theresa in this post....maybe tomorrow. I had all of my "trick bag" packed for Theresa and called her to ask if there was anything she wanted. This very faint munchkin voice said no. She told me she was having muscle problems. I asked where and she said in her mouth. I told her I'd be right over. Driving in the car I began imagining all kinds of things. The Joker from Batman, Jim Carey in The Mask, John Travolta in Old Dogs...odd no women have had frozen faces! Much to my relief, Theresa looked pretty good when I walked in her room; not scary. I quickly realized how tightly her jaw was clenched. The nurse told me her feet had curled and her shoulders pulled up before the Benedryl. They believe she had a reaction to the Compazine they gave her for nausea. This is apparently a possible side effect, but one Doctor told us although they studied this in med school, she had never seen anything like this. So, I unpacked my trick bag itemizing each item. We agreed that today was not the day to attempt the shampoo. I finally gave her that big hug and began her head, jaw, ear, face massages. Since my armpits were right in her space, I felt bad that today was the day to try the new powder fresh antiperspirant...it's strong and a little obnoxious. She said the massage felt really good so I just kept it coming. I had stopped at Starbucks to give her iced green tea yet another try. Today she bit on the bait. Although the Benedryl worked from the neck down, she really seemed uncomfortable and stressed from the neck up. Many doctors and nurses came to see her. Probably wanted to see the reaction they only read about in textbooks. One of Dr. Muldoon's associates came in with some optimistic thoughts for tomorrow. Foley out, better food, more moving around...all sounded good, but let's fix this girl's face. They had several calls out to see what ideas other departments had. Being inspired, I asked Tree if she wanted to go walking. We did. She may think she's slow, but she was moving right along in that corridor. Unfortunately, as we got to the nurse's station, the smell of cooked food started her tummy rolling. We managed to get to the door of her room before she vomited. I got her in her chair, cleaned up what missed her basin and wiped her face with a warm cloth. I could feel the tightness was back big time in her jaw. We were still hours away from her next dose of Benedryl. We went back to massage. Tree was eventually helped back into bed. The IV nurse came in to move her IV. Nice, gentle...Tree didn't flinch, but then again, maybe when your jaw is locked, you can't flinch. She told Tree that she was hoping she wouldn't have to come back...aren't we all? Shifts changed, new nurses came on deck, and the massage continued. Rob brought the kids up after Ellie finished her first day of "Girls on the Run" at school. Thanks to everyone who helped it all go smoothly for Ellie, and Rob. Rob took the car in to get the brakes worked on today, and good friend, Cindy, carted him around to get groceries and supplies. There was mention of Nick getting a good look over by Morton Grove paramedics in the produce market, something about them being in the right place as the cart tipped over on Nick, but in light of Theresa's already tense situation, I thought it best we didn't elaborate too much. The nurse came in and told us that instead of Benadryl, neurology had recommended Cogentin. It's commonly used for Parkinson's Disease, but it is used off label in situations like this. BRING IT ON! About 5:45 Theresa got the med through her new IV. The nurse said if it was going to work it would happen fairly quickly. IT DID. In roughly 5 minutes, Theresa told us she could feel it working. In her words....Woohoo! She started smiling. Her smile, her beautiful smile. The frozen face was gone. The original Dr. who told us she had never seen anything like this stopped back in to see Tree. Like us, she was greatly relieved. She said with Theresa's sensitivity to so many drugs she had been hesitant, but was so happy it worked. On her way out, she reminded Theresa to never try Compazine again...no problem! There were kisses all around and we left Tree at about 6:30, her face still beautiful! The kids wanted me to drive them home; I complied. Gary beat me home. He told me Theresa called and sounded like her old self. I called her back, yes she was still fine. Dr. Muldoon had stopped in to see her. She wanted me to add this to our post for today. (For those of you who actually read this through, you do get a quote from Theresa.) "Dr. Muldoon removed 42 lymph nodes, 7 appeared questionable. The radiation did indeed shrink the tumor." Tree said he told her he just took all of the nodes because there was no reason to leave them there to just cause problems in the future. A good friend, Adie, had stopped by for a visit, so I wished her a good night and sweet dreams. Hopefully tomorrow will be a problem free day for good healing and recovery. It's about time she got a break!

I ask you to join me in visualizing Theresa's healthy, relaxed body, a smooth recovery, and a new happy, normal Theresa, whoever that might be. Thanks! Paula

She's Got the 4th Day Hospital Blues

Hello again. No apologies...I'm doing this as long as I have to. I went to bed last night with a very heavy heart. Theresa is in the hospital and I trust that day by day she is improving and feeling stronger. Yesterday was a big set back for Tree. I had an appointment this morning with Theresa's ostomy nurse, Jennifer. I was supposed to go and learn the ropes to help Tree out. After having a very heartfelt conversation with my dear friend Jamee (I always feel very at ease and somehow more sane after our chats), I headed over to the hospital. Theresa was in the bathroom giving herself a little sponge bath and brushing her teeth. Good sign, I think. I watched her settle into her recliner. Instant all over leg and body shakes. Hmmmm. The nurse brought her a heated blanket, I rubbed her shoulders and her body calmed. She stopped vomiting at about 1:00 am, they changed her pain medication to Toradol, and replaced the catheter. We opened the room shades and I noticed that her color really was very good. She actually smiled at a few of my attempts at humor. We uncluttered her tray; it was too full for her. I noticed she seemed very tired. After a day and night like yesterday, I get it. Her clear liquid diet was restored, but she doesn't want a repeat of the flavors she's been throwing up...we've all been there. There's a reason I don't drink Chardonnay anymore! She told me that the new medication was OK, and she still had the ability to pump the old Dilaudid if she really needed it. Jennifer came in at 11:30 and she felt so very bad that Theresa had her weekend set back. She too had hoped that Tree would just have a breeze through post op, but these things do happen. We chatted for a bit and Jennifer told Tree we didn't have to do this today if she didn't want to...Theresa agreed and feel asleep. Jennifer and I quietly chatted at length about our Alma mater, St. Scholastica. She was a year ahead of me. I really like Jennifer. She has an easy smile and a great demeanor. She has the personality that will get Tree through the nitty gritty mechanics of this dreaded ostomy stuff...me, too. Very easy going, low key, I think she will be very helpful to Tree. I gently awakened Tree to tell her I was going to go so she could get some decent sleep, we kissed goodbye and I was off. Not quite. Another friend, Pat, one of the Millies, had an appointment at the hospital and had stopped by to see Theresa. Tree acknowledged her, but fell back to sleep. So Pat and I went to a sitting area and chatted over some iced tea. My friends are protecting my sanity! We talked until it was time for her appointment and then I came home. I talked to Rob...things seem to be going OK on the home front. He said he planned to take the kids over to see Tree after homework. I suggested that he take a Starbucks iced green tea for Tree. It's a long time favorite. He called me after the very brief visit. Tree didn't want the tea, was in bed and very tired. Hmmmm. He had dinner planned in his head so I know they were going to be fine tonight. It was my girl that I was concerned about. Was the new drug too good, or was she just blue? I say just blue...she has every reason to be big time blue. Jo called her after work and she was quick with Jo. I called her and she told me that she is fully off the Dilaudid. She had pumped it this afternoon and promptly threw up. She was feeling nauseated and I told her I'd call her back. So now I'm thinking that in combination with all of the crazy stuff that happened to her this weekend, Theresa is down. I think it must feel a little like incarceration for her right now. The only thing she really has control over is sleep. So, I called back and she was a little lighter in tone. I told her I'd pick up some of this powdered shampoo I read about...she wasn't thrilled. We agreed that maybe she'll let me help her wash her hair tomorrow. When I'm sick, that 1st shower and shampoo always make me feel like a million bucks! So, that's my morning goal. She told me that Uncle Bill had stopped by for a visit, I'm not sure how receptive she was. Kate stopped in before she started her shift at 2:00 and just felt she was tired. So here's hoping that a good night's rest will make all the difference for Theresa. I have a few things to take tomorrow that I hope will ease some of the boredom. I have some aromatherapy shampoo to try. Other than that, I'm out of tricks. I'm going to put on my happy mommy face and go in there in the morning and make some serious attempts at making my girl happier.

In closing, please join me in visualizing Theresa's healthy body, her safe and complete recovery, and a HAPPY new normal Theresa whoever that may be. Thanks! Paula

Dragonflies and Drugs

Yes, sorry to disappoint you, but I'm back once again. I'm starting early tonight because I'm mentally and emotionally fried. I hear a glass of wine calling my name...

The day started out perfectly. A nice breeze, sunshine and a facebook post from Theresa saying she was truly excited about starting clear liquids. Couldn't believe she was typing away on that little itouch with her swollen little fingers. She told me she was single finger typing with her left pointer and it took about 10 minutes to do a sentence. Dedication! Also a sign for me that she was craving connection again. It was a day for connection. Rob took the kids up after Church and they had a great visit. Gary's Mom & Dad, Grandma & Grampa GG, stopped in to see how things were going. Dean came by and so did Kate. Theresa made 3 loops around the corridor today and her catheter was removed. She really enjoyed her cherry ice. Rob and the kids came by here at 4:30 for Sunday dinner. My neighbor and good friend Katherine supplied the entree...thank you very much. Ellie helped me with the sides and fruit. Jo, Ole and Tony couldn't be with us and although we enjoy these meals together, Ellie hit it right on the head when she announced that Sunday dinner just wasn't the same without Mama. Theresa and Jo are my wing girls on Sundays...really always, if truth be told. I really missed them today. Just before dinner was ready Ellie came running into the kitchen to rush me out to the yard...hurry...you've got to see this! I figured Nick was doing something funny again. I walked out onto the deck to behold something I have never seen in my life...hundreds of dragonflies swarming our backyard. Not the yard to the East; not the yard to the West; our backyard. Mesmerizing, fascinating, beautiful! After Rob left with the kids, I googled the symbolism of dragonflies. The dragonfly is considered to be a messenger connected with renewal, positive force and the power of life in general. In my heart I believe those dragonflies were here for Theresa. For her new healthy body and positive change in becoming the new, happy normal girl whoever she may be. Whimsical, but I like the thought. I called after my research to ask if there was anything she wanted us to bring when we saw her tonight. A faint little voice answered the phone. She had been vomiting through the late afternoon and evening. She had been restricted to ice chips once again. So we were told to just come....no supplies. We headed over to find her in a dark room, basin on her chest, cool cloth on her head and tears in her eyes. I rubbed her feet. She said they had given her anti-nausea drugs and she was pumping her pain meds freely. Maybe she tried too much today. Maybe the broth and cherry ice just went down too fast. She's not a happy camper. They will probably replace the catheter. She said something about having a stomach scan, but she wasn't in a conversational mood and I know better than to push. I gave her a head and temple massage, I felt like I was taking care of my little, little girl again. We kissed goodnight. We told her to rest...sleep, if possible, and I will see her in the morning. I called Rob on the way out to catch him up on the events of the evening and to tell him that Theresa wouldn't be calling in her good nights to the kids. We agreed to tell them that I put her to sleep massaging her feet and we didn't want to wake her up. Hoped that worked...Ellie does read between the lines! I cried on the way home. There is nothing we can physically do. All we can do is trust in her doctors and nurses and keep her in our thoughts and prayers.

So, in closing, maybe we should not be focusing so much on a speedy recovery, but a complete, easy recovery. Her body is working so hard! Please join me in visualizing Theresa's healthy body, a safe, complete recovery, and a new happy, normal Theresa whoever that may be. Paula

PG- Parental Guidance; Not!

I'm back. Not that Theresa read my entry from yesterday and thinks I'm doing an OK job, but because she wants an entry and can't do it herself yet. It's one of the few things I can do for her right now. I'm scrambling, looking for something to make her feel better, and I can't even give her the big hug I know we both need because I know it will hurt her. We saw her tonight and she looks so much better than yesterday. Her room's temp has been adjusted several times and seems more comfortable. They gave her an ice pack for her neck to keep her cooler. Her dosage on the pain meds has been increased. She was sipping ice water and sucking on ice chips. Her arms are pretty bruised and her hands are swollen, but she is my beautiful girl. Quiet grace and dignity even in this surreal situation. She really does look and seem more peaceful today. I know she saw Ellie and Nick this afternoon and I think that eased her heart. She was out of bed and walking this afternoon and then spent some time in a chair. She says she's very slow; I think it's remarkable that she got around as much as she did today. I'm glad Kate was with her last night. That whole idea of being alone and in pain is so hard for me...I'm relieved she had human warmth for that long 1st night. There has been talk of Tree being released midweek. I know she would be out of there tomorrow if she could. Let's keep those thoughts and prayers for a speedy recovery going.

We raised both of the girls to be strong, independent women. I've watched them work through very difficult situations. I watched both of them give birth. I can tell you they are very strong women. A few days ago Tree said she was scared of the unknown. Aren't we all? I guess the thing is not to have fear. Theresa really worked to educate herself, and us, on every aspect of this disease and treatment. Knowledge is power. But there are those elements that we just can't prepare for, the unknown...that's the scary part. At some point you just have to take that big leap of faith and hope it all works out. Theresa took that leap yesterday and I hope that minute by minute she finds things to be a little more controllable and a little less scary. As parents we comfort, protect, and shelter, but I'm finding I'm so deficient in my ability to do that right now. I guess this is where I count on Theresa to remain strong. We'll be there to offer support, love and whatever is within our capabilities, but we ultimately count on her strength. So maybe you can add some extra thoughts and prayers to help keep Tree strong.

As for the kids...they spent the day with Uncle Dean. They went to the Lincoln Park Zoo and the Shedd Aquarium. Theresa has a great photo of the three of them at the Shedd on her windowsill. They all look happy...OK, Nick is sticking his tongue out, but that seems to be one of his new happy, crazy looks! Rob took them up to see Tree this afternoon. She said they both took their time taking in all of the surroundings. Nick was partial to the buttons of course. Rob was concerned that Ellie didn't seem to connect with Theresa. I'm not concerned. I think it's her strength. Her self protection. They're going to Church in the morning and will get to see Tree afterwards. I hope it's a little more relaxed for all of them.

I'm up much later than Theresa, so for those of you who read her blog right after the nightly news, I'm sorry. I'm closing this post asking you to join me in visualizing Theresa's healthy body, speedy recovery, and a new happy, normal Theresa, whatever that may be. Paula

Guest Blogger...she trusts me!

Tonight I have the task of blogging for a very strong, smart young woman that I have the honor of calling my daughter, Theresa. We always hope that people trust us. Tonight I wish Theresa didn't trust me quite this much. Sitting here trying to put this blog together in my head, I realize she has been doing this for almost 5 months. Incredible! She's managed to post almost every night...through pain, nausea, fatigue, and anger; she sits at her computer every night and takes us along on her day's journey. She always keeps that little edge of lightness to her posts. I am amazed. She asked me to write this post for her this evening because she was worried she'd be too loopy to do it herself. I'm here to tell you that I do believe she would have done a fine job of this herself. Gary and I went up to the hospital to see her this evening. I needed to see her. All day long I felt like a mother hen running around trying to protect her chicks, but one was missing. Theresa looks remarkable. Tired, yes. There was that little quiver in her chin that both of my girls get when they try to keep the inevitable tears at bay. But she kept it together. She was warm...the room was hot. Maintenance had to come to do an adjustment. I got her a cool cloth and it helped. She was very dry and was still unable to have anything by mouth...even ice chips. I brought her some lip balm and she did use it. She showed me her incisions and I am truly amazed at how small the incisions are. The actual tissue removal was done by robotic arms, Da Vinci, ironically. Perhaps it was given an artists name because it does such precision work and still leaves the patient looking like a work of art? Although she is controlling her own pain meds and is doing so easily, she was lucid and true to form, in possession of her sense of humor. We did promise not to make her laugh...she is quite tender, and the laughter although welcome, does not make her happy. My friend Kate, a long time nurse at ENH, was Theresa's nurse this morning and she is going back to the hospital tonight to sleep over with Theresa. She has eased my heart and soul, and I know she has done wonders for Tree's psyche. How do I begin to thank all of Tree's followers and supporters? I keep telling her that what you put out there in life is what comes back to you. She is a wonderful person and I am so proud to call her my daughter. So thank you all...please keep thinking positive thoughts, praying and do check in on her...this is a very lonely road she's been walking down!

Theresa always fills you in on family stuff....like I said, amazing she does this every night! The kids were with us last night. It was a very tearful good bye. After Rob and Theresa left, we had dinner, got ready for bed, and watched a portion of Camp Rock 2...part of Ellie's list of things to do since she knew they would be staying over! After several books and songs, Ellie requested a sleep mask. I truly didn't even think I had one, but she knew just where it was, and it did seem to help her relax. Nick took a little longer to fall out, but they both ended up in their beds until morning. Nick was last up and loudly announced that the sun was in the windows and it was telling him it was time to be up! Gary made pancakes; Ellie added the chocolate chips. Tony and Jo arrived just in time to join in. Ellie got herself dressed and I made her snack. Jo took her to school. We had included Tree's mantra for healing in bedtime prayers last night and said it together throughout the morning. Ellie calls it Mama's poem and is pleased that she's helping to make her Mom stronger. Nick is just along for the ride, but he does go along with us. It is so wonderful that Theresa has such wonderful support at Ellie's school. The classroom teacher, our beloved Mrs. Bart, and the very dear Social worker, Ms. Dullas (sp?), had so many options ready for Ellie today if the work in the classroom proved too tricky today. Again, I am so touched and warmed by people's kindnesses. Jo and Gary took the boys out to the park and for a ride while i stayed home to man the phone. Rob and Kate called in regularly with updates, and much to our relief, they were all very positive and promising. We were all back here for lunch and play until it was time to leave to get Ellie from the bus. Rob called around 1:15 to tell us that Tree was out of surgery and that ultimately, all had gone as planned. We got Ellie from the bus and waited for Rob to get home to take the kids to the Union picnic. Theresa had left notes for the kids on the table...she thought of everything! Ellie was very proud to tell me that she stayed with her class all day and did a great job. I told her how proud I was, and how happy it would make Mom to know she did her best.

So, I now see how once you start typing it just keeps coming. Sorry if I ran on too long. Theresa will have to share her own feelings, mental, physical, emotional, and spiritual, with you as she can sit up and have a few lines removed from her arms. In closing I ask that along with me you visualize Theresa's healthy body, cancer free; speedy recovery, infection free; and a new happy, normal Theresa, whatever that may be! Thanks! Paula

I think my tear ducts are dead

Rob stayed up with me last night and watched the first couple episodes of Nurse Jackie - we both went up to bed together knowing it was a long day ahead. We had no clear plans for out family morning just that it was going to be just that - our family morning. We started by heading to Glenview for a breakfast at Egg Harbor. Technically, breakfast was the last meal I could eat before surgery tomorrow but I had the mind frame - the less in the less out. The kids had rainbow pancakes, Rob had blueberry pancakes and I had a yogurt parfait. We had a nice breakfast together. On the ride I got a call from Dr. Szokol (my anesthesiologist) and he eased some nerves - saying my ear seeds can stay in and that he would indeed read my mantra to me. We went over my anesthesia history (twilight from the colonoscopy and ultrasound and epidural from labor) and he said he'd see me tomorrow morning.
We left breakfast and I took Rob and the kids to Park Center to see the pool - now everyone is equally interested and it will be a destination sometime. We stopped at Costco for zyrtec and coffee - some essential things in this household. We went to our favorite park and the kids played so well together. I sat on the bench and really debated putting my feet up and going to sleep - the sun was super warming and it just felt good. On our way to another park we found that one of our favorite thrift stores had re-opened for the fall and we lucked out on some good finds. Our final park was the newly renovated one at Oakton Park and I have to say it is a really cool park. Ellie was familiar with from camp but it was Nick's first time there and he had a ball - presented new challenges.
We came home and I began my prep - the magnesium citrate tasted gross - like salty seltzer water with clorox wipe flavored lemon - yuck. I drank my glass and quickly followed it with water. I got the call from the hospital giving me my time for the morning - 6 AM and going through all the can and can't for the next 18 hours. Rob played with the kids in the basement while I hung out on the couch reading my newly delivered book - Prepare for Surgery, Heal Faster (timely delivery). I did some laundry, read some of the book, visited with the kids, set up the wii to stream netflix - then it was time for the 2nd glass or yuck. Honestly, I would much prefer this prep to the colonoscopy prep - you don't have to drink as much actual medicinal liquid and it seemed to have a similar effect. I did get stomach cramps and progressively got colder and needed to put on socks and a sweater.
Every little thing set off tears today (and really the last couple days). I am touched at the wishes coming my way but seriously I don't think I can cry another tear. I know I have the best colo-rectal surgeon (the chief, in fact), I know I have a highly recommended anesthesiologist (chairman of the department) and I know I have the most extraordinary nurse (my second Mom) - I know all this but I am still scared. I am scared of the unknown - who will this new me be and how am I really going to feel. I got the kids clothing and overnight stuff together and we drove to Mom's for drop off. It was truly evil hormones - Ellie would look at me and start to cry, I would cry seeing her and Mom would cry looking at both of us. This went on for quite some time - I just couldn't leave Ellie in that state - I wanted her to know I was going to be fine but it was ultra tough to put on that face. Simply, the hardest thing I have ever had to deal with as a Mom. Nick was fine - he gave me a hug and a kiss and told me to move out of his way (I was blocking the tv). One final hug and kiss to Mom and Ellie and I finally made it to the car.
Arriving home I found a little note and a small stone from my friend Christi. It was as if she knew I would need that message when I walked through the doors. More crying as I listened to Jo's message saying she knew everything would be great and she loved me.
I have managed to zone out on facebook for the last couple hours mindlessly playing games and getting miserable scores. I have prepared for the next week, I have a bag of clothes for Rob to bring me when I can wear clothes again, I have a bag of treats for the kids when they visit, I have my mantra written out and my insurance card. I have removed my jewelry and written notes to both Ellie and Nick for when they come home tomorrow. I thank all my family and friends for calling and emailing today and I do really appreciate your love but in light on the whole crying this and just being emotionally drained I will call you back sometime later. As I was sitting on the computer the doorbell rand and it was Christi - more crying. She listened to my bizarre rants in between sobs and I was comforted. Mom called to let me say goodnight to the kids - I was sort of able to hold it together.
Tomorrow by this time I will be cancer free (thinking positive thoughts). I will hopefully be able to sleep - hopefully be zoned out on pain killers that induce sleepiness. I still have to drink 24 ounces at 9 tonight - that should be wonderful for the hopes of sleeping tonight. I have controlled what I can and I am in the best hands and have the most wonderful family and friends. I am practicing my deep breathing and have comfort in the fact that this surgery tomorrow represents 2/3 of my battle with this stupid cancer being done. Visualising my healthy body, a speedy, infection free recovery, being cancer free and the new normal me - whatever that shall be, Tree