Surgery scheduled

I couldn't settle down enough to go to sleep when Rob went up so I finished watching Life in Ruins (ok movie) and then watched a bit of Craig Ferguson before attempting to go to sleep - still took another hour or so in bed. Nick keeps waking in the middle of the night with some sort of nightmares - not real sure what this is all about. We all slept in until 8:00AM and took our time getting ready this morning. I fished Dr. Muldoon's secretary's card from my purse and made the phone call I really didn't want to make - my surgery is scheduled for Friday, September 10th. I came to this week for a couple reasons but most importantly - Ellie will be back in school and back into a "normal" routine. I attempted to schedule an appointment with Jennifer, the ostomy nurse for North Shore, but she is out of town until next Friday - this is okay for me - another week to not seriously think about the dreaded ileostomy.
We got dressed and headed to Mom's where the kids played with trains and legos before Nick and Tony were both after the exact same thing and the same time. We took a lunch break and though food might make everyone kinder but that didn't happen. We packed up and decided to do some other things while Tony took his nap. The kids and I went to Salvation Army for some back to school shopping (fyi - all kids clothing is .47/piece this week). I ended up with a winter coat and a couple pairs of pants for Nick and Ellie picked out a fall coat. On our way home Nick fell asleep and stayed asleep through transferring from the car to his bed. Ellie and I took the quiet time to have a snack and just relax. Nick slept for over 2 hours - meaning we knew it wouldn't be an early night for him. When Rob came home we discussed going to see a movie and decided with Nick's late nap t was the perfect thing to do. When Nick woke up we packed some sweets and headed off to see Despicable Me (cute but not as funny as Toy Story 3). It was exactly what we all needed to shrug off some stress - movie, popcorn and candy.
We got home and Ellie went to bed smoothly, as predicted, Nick took until almost 10:00PM to finally zonk. Amazingly, I am feeling very well except for the alarming amount of anxiety running through my head. Visualising my healthy body, Tree

Surgical consult complete

I slept rather poorly last night - couldn't fall into a deep sleep and had too much running through my head. Ellie was up first but we were all up soon after. We had breakfast and headed off to Mom's to drop the kids off before Rob and I went for my consult with Dr. Muldoon. The kids happily gave us hugs and said goodbye and we were out the door. I checked in and went to get my vitals taken - I gained a pound and my blood pressure was not 92/68 like last week but 128/80 - a bit stressed out. Rob and I were told to wait in the waiting room until the Dr. was ready. We were brought into the exam room and Dr. Muldoon and Amber, his resident, came in for my appointment. We went over my chemo and radiation history and then went over the surgery which will be done robotic and not laproscopic - the difference he said is laproscopic is like working with chopsticks versus robotic gives him more maneuverability. The surgery itself will take 4-5 hours and I should expect to be in the hospital 4-7 days afterwards. Two big unfortunate details - he will not insert my port while I am in surgery or even while I am in for those 4-7 days and he will be placing a temporary (until about a month after chemo ends, as long as 8 months) ileostomy. When I heard the latter I began to cry and took a couple minutes to gain composure again - this is not something a 34 year old want to hear much less envision - very sad he really didn't leave an option available - this is what he will do.
The way Dr. Muldoon explained it - when I go into for surgery I am 0%, by the time I am discharged I should be at 40% and then in the recuperation stage (about 4-5 weeks) I will get up to about 90% and that is when chemo will start and I should be 100% after that is completed. He will remove the entire rectum and a portion of my sigmoid colon and then re-attach the healthy colon - this will be secured by wither permanent staples or a pressure ring. I could be involved in his research study on the pressure ring - which eventually when inflammation disappears will exit my colon - not sure about this yet. The big bad possibilities of surgery - I could begin to bleed after the surgery, I could require a blood transfusion, I have an increased risk of infection, I could have a heart attack or stroke - but all of these are minimal due to my age and health. Dr. Muldoon said that both radiation and chemo are still working in my body so I could schedule surgery anytime between 6-10 weeks after I was finished - meaning anytime between August 23 and September 15 - I am opting for after Labor Day just have to call and schedule.
Dr. Muldoon said I could meet with him again if I have more concerns or questions and I need to meet with a ileostomy nurse before surgery to get more comfortable with the thought of it. There are various tests and procedures I need to get done before surgery too. Rob and I left and although I am not very happy with the idea of not getting my port put in while heavily drugged and getting an ileostomy at age 34 - I will deal with it knowing Dr. Muldoon is the best at what he does. Dr. Muldoon did say the weeks leading up to surgery are usually the most nerve racking and I can say I am sure he is correct - might need to up the dose of ativan. We went back to Mom's and I had another good cry on Mom's shoulder. We ate lunch together and then Rob went home to mow the lawn while Mom had a painting craft for the kids. We set up the picnic table outside and gave the kids a wooden birdhouse and paint and they went nuts - very different approaches. After painting we washed the kids down and headed inside - it was super hot and humid today. Movie du jour - Bedknobs and Broomsticks. Tony took a nap and the rest of up relaxed. Rob came back to get the kids and I waited for Jo to come home and we went to Target.
Jo, Tony and I shopped at Target while Rob, Ellie and Nick made a ghetto fabulous visqueen slip and slide in our yard. Jo dropped me back at home and we got the kids in for a bath - they were covered in grass clippings. I was reading a magazine and read this page article on Andy's Custard in Evanston and thought it might be a nice treat so even though the kids were in pajamas we took a drive and got custard and it was quite tasty. We walked around downtown Evanston afterwards because we were all pretty full. In one store front there was a t-shirt modeled after the Obama campaign logo (the silhouette face in red and blue) that read "Blago - its time for a real change - 2012 - too funny but maybe only to us Chicagoans. On our way home, while traveling west on Howard a car decided to dart out and try to turn left right in front of ua and all I can say is - I am thrilled we are built Ford tough. I laid on the horn and really stomped on the brakes and although there was an impact - it was small. Ellie almost immediately was sucking back tears - thank goodness no one was hurt - just stirred up. I called the police and we got off of Howard and pulled into the parking lot. The guy was able to pull out his bent in front fender and real honestly we just appear to have a scratch on out bumper. The police officer came and took our information and eventually gave us a copy of his report and we were able to get on home. The guy was (at least) getting 2 tickets - one for failure to yield and one for not having his current insurance card present.
We got home and had settle down time - Ellie was pretty rattled and was concerned that Nick might have bit his tongue during impact or hit his head on the toy he was playing with - poor girl carries too much worry. The kids are now both asleep and I am too emotionally up tight to sleep. I know that I will come to better terms with my surgery and all that it involves but for today (and maybe tomorrow) I am a bit upset and sad. Visualising my healthy body, Tree

Cleaning and Baking Day

Rob went up early and I started watching our new netflix - didn't make it all the way through though. Everyone slept well and Nick was up way too early but I had some baking to do and we came downstairs together. I got Nick some breakfast and I started cleaning peaches for peach-blueberry pound cakes. I realized as I was washing the peaches that 1) we had more peaches than I thought and 2) some were really in need of being eaten. Rob and Ellie came down a little while later and Ellie (aka Sandra Lee wanna be) asked if she could help. I put Ellie in charge of the mixer while I peeled and chopped up the peaches. Ellie measured our ingredients out and mixed them all together in the mixer - I felt like we were having a Lucille Ball moment with the flour - she had the mixer too high and flour went everywhere.
Ellie and Rob went to church while Nick and I stayed home to finish baking. The bundt came out beautifully - our second batch didn't brown up the same way but was still quite tasty. When Rob and Ellie got home from church we ended up cleaning the basement - totally un-intentional. It all started with asking Rob to go through his work shirts and led to a full out cleaning and dusting. It was amazing what we ended up getting rid of - both garbage and donations stuff. The basement looks marvelous and big - we put all the games on our bookshelves to make them more accessible and organized all the bins - exhausting.
We gave the kids a bath and got ready for family Sunday at Mom and Dad's. We headed over a bit early to help out and the kids quickly were outside playing. I helped Mom in the kitchen while Rob helped Dad outside. We had a terrific summer spread of food - tomato-mozzarella -pesto sandwiches and napa cabbage salad - yum. We had our pound cake and ice cream for dessert. We got to visit with Grandma and Grandpa GG and Uncle Bill while the kids played in the water table. It was quite funny - Nick didn't want to get wet - he just wanted to have his hands in the water. Ellie wanted to be saturated and Tony wanted to water his feet.
We cleaned up and moved inside when the mosquitoes and humidity started getting bad. Nick asked to watch the Gnome Mobile - we promised 30 minutes before we had to get going. It was Uncle Bill, Dad and Rob's initial viewing of the movie. We came home and got the kids ready for bed and cleaned up a bit. Rob and I are waiting to watch Food Network Star and we are both so stuffed from lunch.
I think I might try gym shoes tomorrow - my feet are all throbby again today. Consult with surgeon tomorrow - thinking of all my questions - a bit nervous. Visualising my healthy body, Tree

Busy Saturday

I stayed up a bit later than Rob last night but he let me sleep in this morning. I woke up and did some laundry and then had way too much laundry to put away. Ellie decided it was organizing day for her closet and she started with her pajamas and then went on to dresses - we packed up about half her dresses - too small, so sad. Ellie inspired me and I went through my dresser and got a bag full of giveaways too. We got dressed and headed to Whole Foods in Sauganash - PBS Kids Food Van was there and Ellie missed out on the food van last month. The kids did one or two of the dance numbers with Miss Lori's gang and then had some snacks and we packed our bag with snacks. We picked up a snack and drink for each of us and then went yard sale shopping. To all our surprise - Nick fell asleep at 10:45AM in the car for a 2 hour nap - sort of made shopping easier. We scored some good stuff today - the Melissa and Doug pizza kit, a duplo boat and ambulance with rescue people, some clothing and a couple barbie dolls. Nick was still sleeping so we decided to head North and hit a couple of our favorite thrift stores.
We lucked out at the first store and found the Buzz Lightyear figure that Tony got at a rummage sale and Nick has been jealous of. We called our friends Donna and Geoff to see if they might be available for a visit - its been so long and we were close to their house - and they were home. We did a bit more shopping at Gurnee Mills and had dessert at Rainforest Cafe - both Ellie and Nick were in awe of the animals and we were seated right in front of the elephants. We drove to Donna and Geoff's house and had a wonderful time catching up - it has seriously been way too long. The kids played in their trampoline and had a great time too.
We eventually had to part ways and travel home much to the kids disappointment (ours too) but it was a treat to get to visit. The kids played pizza and Toy Story pretend on the car ride home and then sand some songs. We got home and everyone had a snack before putting on pajamas and getting to bed. Ellie zonked quickly - Nick is still awake in his bed - that is the evil part of 2 hour naps.
I have felt good all day - it wasn't until we got home that my feet began to throb and ache. My finger cuticles are a mess right now despite lotion and neosporin they are peeling and bloody. Looking forward to another family day tomorrow and visualising my healthy body, Tree

Wow - a I feel "normal" day

Rob and I were both too excited to sleep last night - we stayed up and watched an old John Cusack movie from the 1980s. Ellie woke up around 7:20AM and went downstairs - Nick and I slept in until 8:00AM. We had plans to spend the day with Jo and Tony and they met us at our house at 9:00AM. We headed off to Pirate's Cove in Elk Grove Village - an amusement park for the toddlers and younger kids. We were a bit surprised to see a line when we arrived as they opened but soon found out it was Superhero Day - not that that meant anything other than getting a squeezy superhero as we purchased our tickets. The kids had a ball between the train ride and the super slide. I packed a picnic lunch and we ate by the waterfall. The kids probably could have stayed all day but the mosquitoes were rampant, the park was super crowded and it was getting hot.
We went to Woodfield to cool off in some air conditioning and Jo informed me she doesn't get out to the mall very often and wanted to hit about half a dozen stores. The kids loved walking by Rainforest Cafe and seeing the "animals" in action. We had some ice cream to cool off and decide what other stores we might want to hit. We decided to treat the kids and we went to Build a Bear Workshop - Ellie has been before but this was Nick and Tony's first time. Ellie picked out a bear and Nick and Tony both got puppies - I love that they have the allergy/asthma choices. The boys really enjoyed filling their puppies, grooming them and then getting to love them. Ellie adopted Gabriella, Tony adopted Ponyo and Nick - well Nick adopted Doggie Beef (originally is was Loompa Doompa - I'm sure he meant Oompa Loompa). We finished up with a trip inside the gift shop at Rainforest to see the fish being fed - and the kids were all very excited to see Dorie the fish from Finding Nemo.
Jo and I were sure the kids would all sleep on our ride home but no such luck - Tony was the only one who gave in. We stopped by a garage sale that Jo and I went to last year and really lucked out on boys clothing but there were no boys to be found today - oh well. Jo dropped us back at home and the kids quickly put on their swimsuits and headed out to the sprinkler. They played until the mosquitoes were, once again, eating us alive. We came in and got re-dressed and decided to use a couple more library reading club coupons - we went to get pizza for dinner and the kids both got their own personal pizza. After dinner we used their ice cream coupon and hit the Chocolate Shoppe - yummy!
We got home and had a quick bath time before getting the kids to bed a bit early. It was as close to a normal day as I have had in a long time but I have to say my feet are killing me. I am looking forward to the weekend - we have just a few plans and they all involve having fun. Visualising my healthy body (I think this visualising stuff is really working), Tree

Wonderful scan results

I'm just going to skip to today - same ole stuff last night. This morning I was nervous, anxious and all emotions in between. I dropped Ellie and Nick at Mom's and was on my way to Kellogg for my Dr. Marsh appointment. I checked in and was told I didn't need blood work today and that was a most excellent thing because my veins were abused enough yesterday and are quite sore today. Dr. Marsh is usually very punctual and I was upstairs in the waiting area forever. Margaret actually came out of the office twice and looked my way but continued down the hall the other way - I was questioning my scan results. Finally, 30 minutes after my scheduled appointment, Margaret came and got me. I got on the scale and I was 132 - 3 pounds up but 8 pounds down.
We went to the exam room and Margaret was all business - I was nervous thinking she knew something. We went over what medications I am taking, what symptoms still exist, how I am sleeping and eating and then she checked my hands and feet. Margaret, after looking at my fingertips, said this would be the perfect time for my crime life to begin. Dr. Marsh came in and we went over all of what Margaret and I just talked about and then he shared his reading on my scan. The tumor has not grown or metastasized anywhere else. The tumors margins have shrunk and the questionable lymph node also seems to have shrunk. The scan shows that the tumor possibly still penetrates the wall but this could be inflammation or edema and not the actual tumor - this could be pinpointed with another endoscopic ultrasound but that would be for Dr. Muldoon to decide. Dr. Marsh checked me out and looked me over and told me I did beautifully. After surgery there will be pathology to determine if 1) microscopic or no cancer cells existed in the tumor 2) streams or spots of cancer cells existed in the tumor or 3) if the tumor had wide spread cancer cells. Dr. Marsh said it is rare to see #3 and #1 or #2 are far more common - depending on which one it is the chemotherapy regiment will be determined.
I left feeling great and got to the car and U2s Beautiful Day was on the radio - a sign for sure. I called Rob and went back to Mom's and shared my news. We decided to get out of the house and Ellie has been wanting to go the Bath & Body Works to get one of those mini anti bacterial gels and the little hanging thing - so that's where we went. I go into scent overload in that store and really don't like any of those fruity smelling stuff. We got what we needed and picked up lunch - yummy spinach pie! We ate lunch and then the movie du jour was Racing Stripes.
We left after the movie and the kids and I headed to Kohl's to spend our bonus cash - lucked out on some 90% off clothing and some Toy Story 3 clearance toys - I spent $40.00 and saved $199.64 - I love when the receipt shows you how much you've saved. We drove home and the kids set up their TS3 sets while I made breakfast for dinner - someone was craving banana chocolate chip pancakes. Rob got home just as I was starting to put the kids to sleep so he took over with Ellie and I finished up with Nick.
Rob brought home a bottle of wine and we are currently toasting our great news. Visualising my healthy body, Tree
A friend shared a link to an article about the after effects of cancer - the things no one shares and rarely discuss - if anyone is interested in reading it here is the link to the article: http://www.cancercounselling.org.uk/northsouth/extra4.nsf/WebResClient/1761049276601BD68025735B00604834/$FILE/article3.pdf?openElement

CT scan complete Wednesday

Rob and I started to watch the news last night when Rob heard Nick singing in the monitor followed by him saying Mom - so I went up to see what he was up to. I went to sit in the chair beside his bed and was surprised to find that Nick was curled up in a ball on that very chair. He was talking in his sleep but did move from his bed to his chair so I placed him back in bed. After about an hour he stopped "jerk" moving in his sleep and settled back in until the rain started early this morning. Ellie came in at 6:45AM and asked if she could sleep in our room - which she then did - we came down for breakfast at about 8:00AM - thanks to the dark skies.
I couldn't eat breakfast because I couldn't eat/drink 4 hours before the scan but the kids ate their waffles and poptarts. I had to start drinking the prep 2 hours before the scan but finish at least an hour before. I took the advice from Margaret and mixed it with cranberry juice (I don't really drink juice so drinking 20 ounces left my tummy feeling un-easy). I opened the prep and was relieved to find that it really had no smell and after mixing it with the juice it also didn't have a taste. I finished drinking the prep and we headed over to Mom's - the kids were thrilled it was raining and they got to wear their raincoats. Ellie and Nick decided they were going to use recycled boxes and legos to make a city - they were very creative. When Nick found out I was going to the hospital alone he couldn't wait to get me out of the house.
I got to the hospital and checked in and it was kind of like I was having an entirely different experience than my first scan. I was told to wait in the women's waiting room (first difference). I was eventually taken back to the CT room by Clarence - once again weird experience because you keep walking down different hallways and turning further into this maze, far, far way from the general people. I was told Annie would be inserting my IV and running the scan and she was ready when I walked into the room. I was in a different room than my original scan - same big donut machine but also a machine hanging from the ceiling - stark white walls and very cold. Annie got me set up on the table with a giant wedge under my knees and a not quite plump enough pillow under my head. I told Annie I have rolling veins and she said every ones veins move - bad sign. Annie begins on my left side and tries to locate a vein and thinks she has one so she cleans my arm and inserts the needle before re-locating my vein. She then starts pulling my skin down to try to get the needle into my vein and asks me to pump my fist - none of this feels good. Annie finally admits defeat and says she can't get the catheter to advance and needs to try the other side and as she is moving to my right side asks what kind of chemo I had and if I have a port - another bad sign. We try again on my right side this time she kept her fingers in place on my vein but still had to pull my skin around to get the catheter to advance. She finally got the IV in and used about 6 pieces of tape to keep it in place - the same tape that eats my skin. I soon found out that the machine hanging from the ceiling was the interactive solution - they just hooked it into the IV and it had a long cord to be able to travel through the machine with me. Annie left me and the scan started - same automated voice command - breathe, hold breath, breathe - still don't understand why it can't be a human voice - like one of the three people watching me slide through the donut. Annie sent another person in to remove the IV - I wish she sent another person in to try the right side - I predict massive black and blue arms tomorrow. The IV was pulled and I was told Dr. Marsh would have the results in 24 hours and I have my appointment with him tomorrow morning.
I called Mom to find out if anyone was hungry for lunch but the kids had just had a snack - I picked up Foodstuff sandwiches for me and Mom - yum! Apparently when I called Nick told Mom it wasn't time for me to come back yet and when I tried to get in the house when I came back Nick tried to push the door shut - I guess he has missed hanging out with Grams. The kids showed me their city and Willy Wonka was being played - again. Ellie decided she was hungry and wanted a cucumber sandwich and Nick wanted a PB&J - Mom fixed Ellie's and I did Nick's. We ate lunch and the movie finished and Nick wanted to watch Mary Poppins. I told the kids we were going to leave because no one was relaxing and Ellie said she was going to relax if we made a "beach" on the floor - we laid down the sleeping bags and the kids did relax for a bit.
Eventually, we made our way back to our house for family dinner but we needed to stop at the store to pick up some fruit. While in the store the sky opened up and poured and was still raining pretty hard when we needed to leave but the rain made us cool off. Mom and Ellie worked on a fruit salad while I got the chicken marinating. Rob grilled for us and Dad arrived just in time for dinner. After dinner Dad and Nick went to play with Nick's trains and Mom and Ellie played some games. Rob and I watched the results from America's Got Talent and now we are just relaxing on the couch.
I am anxious to find out the results tomorrow - I did feel heat with the IV today and it was just in my pelvis - I am hoping it is just the amount of dead tumor down there. Today is the first day I noticed a positive change in my fingertips - they aren't all tingly and numb - I can sort of feel again. While showering today and soaping my feet I realized they have sort of become red like my hands were - strange. Visualising my healthy body, Tree