Sleepies have caught up with me

I think this will be a shorter entry tonight because I am tried. I fell asleep on the couch and had a 20 minute nap but I thinking I could fall out again. Usual morning round here. Nick found our stash of home videos and asked to put one in and we weren't able to leave the house after that for a few hours. Funny how the kids have grown up. Nick and I did leave to do some shopping late in the morning. We did a bog loop, thrift store, Von Maur, Kohls, Target, Whole Foods, HomeGoods. Nothing great today but we were able to get some gifts that we needed for baby and wedding showers and birthdays. We had lunch at Target and Nick looked at me about half way through and asked if we were having a date - yes! Nick also has reached the age where he just blurts his thoughts out and I was mortified when he blurted out, "Mom, why does that boy get to work at Target?" as the little person walked past. To make it worse he was getting food when we were and Nick just kept looking at him and asking about the little boy. We came home and got Ellie from the bus. Ellie did her homework and then we all watched some more home videos. Rob is working a whole bunch this weekend so when he got home I said I was going out to give him some time with the kids. I went to Gymboree to use my GymBucks - found some cute things for the kids on sale. I came home and made dinner - pretty much the best nachos ever. I had cheese, black beans and veggie chili on them and they were real good. I made some mini cinnamon rolls for dessert - also very good. I took a quick shower and ever since I have been so cold. My hands and feet decided to act up on the neuropathy train today. When I went to wash my feet in the shower I realized it was almost like my feet were asleep without the pins and needles just a bizarre feeling. Visualising my healthy and continually healing body and the new normal, Tree

Some closure

I could not get sleepy last night so I ended up deciding I needed to go up around 2:30AM. Nick slept in again this morning but Ellie was already downstairs eating breakfast. I got all our clothes ready and then made Nick some breakfast. I packed Ellie's lunch and cut up an apple for her snack. Ellie walked to the bus and when the bas came I got Nick ready to go to Mom's house - I had my meeting with Carol from the survivor ship program today. I dropped Nick off and then was on my way to Kellogg. I checked in and Carol came to find me. We had a lengthy meeting - a bit over an hour. The meeting basically goes over all my chart from the date of diagnosis until today. We talked about radiation effects, I still have pain when a door hits my butt or when I try to use my hip to push something closed. This should lessen with time but might never be gone. We talked about surgery and how other than the compazine allergy the surgery and recovery were pretty much textbook. We discussed my folfox therapy and she had calculated out my total doses of each of the different parts of the chemotherapy. We talked about side effects that still exist - neuropathy, some depth perception issues which also could fit into the neuropathy category. Sleep or sleeplessness. Carol informed me that there is a blood test Dr. Marsh can run that would give me a clear picture if I am in active menopause or not. We spent a bit of time talking about what early menopause means higher risk for cardio-vascular disease, bone density issues - especially in the pelvic region because of the radiation. I am apparently more at risk for pelvic fractures - I will have to remember this next time I decide to fall down the stairs. We went over the 'standards' for testing and office visits - I guess the new normal involves a pretty steady schedule of doctor appointments. Carol gave me a huge folder filled with resources and we discussed symptoms that definitely need to be called into my doctor. By the end of my meeting with Carol I started to feel some closure to this chapter. I now know that after my list of May appointments and procedures I can now add a visit to an opthamologist, my ob/gyn and my new primary care physician. I went back to Mom's house and we had lunch together before we went home. Nick really wanted to watch his new dvd from the McSlaton family. When we came home he was more interested in playing with his trains. I did eventually convince him to come and cuddle with me and we watched Kipper on tv. We walked to the corner to pick up Ellie from the bus (which was so late today) and they finally hired a permanent driver. Ellie started her homework and then Mom and Dad came over for some playtime before dinner. Nick was happy to have a playmate while Mom helped Ellie finish her homework. After homework, Ellie and Mom tried out Ellie's spa craft kit - they were making oatmeal soap for the tub. I started doing dinner prep - cutting veggies and getting water boiling and the oven preheated. Rob got home from work and he was in a good mood. Mom helped me finish up dinner prep and then we sat down to eat. We had pasta, meatballs, broccoli, asparagus, garlic bread and fruit salad. Ellie made her own creation - garlic bread with meatballs, broccoli and noodles sprinkled with romano cheese. After dinner, Mom and Ellie read a book - Nick listened. Mom and Dad left and we got Nick into a bath. We went up for bedtime and Nick asked if I would cuddle him and he was out cold about 2 minutes later. Rob and I have been watching tv and talking - he went up to bed a little bit ago. My knee has been sliding in and out of place today - doesn't feel so good. I think I might be ready to give a pedicure a try in another few weeks. My feet are still peeling and still pretty sensitive but to soak and be pampered might just work. My hands are doing pretty good - they still have occasional pins and needle pain. Visualising my healthy and continually healing body and the new normal, Tree

Tuesday - busy day

I heard footsteps upstairs around 11:30PM last night so I made the decision to stay on the couch a bit longer because I knew Nick was in my place in bed. I went up around 4:00AM and moved Nick over and went to bed. I woke up this morning and Nick was still sleeping but Ellie was downstairs. I got clothes ready for all of us and then woke Nick up and we went down for breakfast. Our phone line still is having issues - this morning the issue was the internet connection fading in and out. Ellie and I packed her lunch for school and got her a snack and then she was on her way to the bus stop. I got nick some sausages because he was still hungry and then we drove to school. I stopped into Salvation - nothing great today, although, I did pick Nick up a play-doh machine that Ellie has and Nick always beg to play with. I went to HomeGoods and looked through the clearance - found a few things for gifts I need. I went to BigLots and picked up cereal and juice and a couple other food things. I walked through Michaels but didn't find anything. I finished my shopping adventure at the produce store and was able to pick up things for the week. I picked Nick up from school and we went home to un-pack groceries and pick up Scarlett supplies which reminded me I needed to place an order for supplies. Nick and I stopped at Target before going over to Mom's. I picked up pizza crust for dinner and replenished our claritin and vitamin supply. Mom had lunch started when we got there. Tony was playing with me right from the moment I walked through the door. I picked him up for some love and he motioned for Dad to take him - Dad asked him to give me a kiss and I said that Tony didn't love me and to prove my point he cuddled into Dad's neck and looked at me and tuck out his tongue and I think he might have made a noise. We had lunch together and then Dad took the boys out in the yard to play and soak up the sun. I have to say that even though it was not warm today they all came in smelling like summer kids. Mom said she would watch Nick so I could take Ellie to her appointment with Trish. I left to pick Ellie up and gave Nick a kiss. I got Ellie from the bus and we came home and had a snack before we drove up to Cancer Wellness. I read all the table magazines while Ellie was in with Trish. When she came out we got gas (local friends and fam- gas is 3.95 at Lake Cook and Skokie Rd) and drove back to Mom's. Mom and I changed out Scarlett who is doing much better today - not really so red and not bleeding. We came home and Ellie did her homework while I put the pizzas together and got dinner ready. Rob started a bath for Nick and Ellie and we all ended up finishing up at the same time. The pizza was quite tasty and was liked by all because there was none to put away. We put the kids to bed and came down to watch Dancing and then Parenthood. I am watching (listening) to George Lopez while blogging and they just showed Drew Carrey - he totally doesn't look the same man. I am happy to report I think that maybe my recent ability to use my colon might now be closed again. How weird and bizarre but all the pressure has ceased. My feet have tingled all day and I am not sure why but some of the laundry that I brought up smells like buttered popcorn. Visualising my healthy and continually healing body and the new normal, Tree

Million dollar question still unanswered

I went up to bed around 2AM - I was sort of waiting for the storm to die down and if the kids would stay asleep. Everyone slept through the storm and it was a rather quiet night. Back to school today, Nick woke Ellie up around 7:30. We went downstairs for breakfast and got dressed. I packed kiwi for Ellie's snack and got her lunch ready. I asked Ellie last night if she wanted to clean out her backpack - she said it wasn't in need, yet that is what she was doing 3 minutes before she needed to leave. Ellie got out to the bus and was picked up and I got Nick some more breakfast because he was still hungry. When I tried to call Jen Dore this morning I realized our phone line either had water or wind damage from the storm and had tons of noise on the line. I left a message for Jen and then called the phone company to place a service call - our internet also was flaky this morning. Before I took Nick to school I got a call that out issue was resolved. Nick and I went to school and he was happy to be there again. I dropped off some books at the library before coming home. Our phone was again noisy when I got home - so I place another call to repair the line. I got a call back from Jen and she said I should run my symptoms past Dr. Muldoon - so I emailed him with my story. I picked Nick up from school and we came home and got ready for Mom, Dad and Tony to come over and play. They brought leftovers from yesterday with them for lunch and then the boys went to play with the trains. I was off to my appointment with Dr. Hulick, the genetics doctor. Shelly, Dr. Hulick's assistant, sat and discussed my family tree for the first part of my appointment. I had to fill in this 10 page questionnaire about 3 weeks ago that dealt with my family cancer history and other health history questions and fax it into them in advance of this visit. I found out that my tumor and nodes were biopsied and that I do not carry the Lynch Syndrome gene. This means I am not at a higher risk for other particular cancers. Looking through my family tree there is nothing that jumps out. So the million dollar question is still unanswered - how does a 34 year old with no family history, hasn't eaten red meat in 24 years, has never smoked and isn't partaking in happy hour every night end up with stage III rectal cancer? The other good news was that I had no polyps present at my colonoscopy and hope the same happens at this next one. I was told there were a few tests I could pursue but chances of insurance covering them was not great and they most likely wouldn't tell us anything more - an upper endoscope - think colonoscopy of the upper GI and digestive system and blood screening (although the biopsy contains more info). The wonderful thing about the visit today is my tree will hang out in their computer system and when new genes are found and new information that is pertinent to me becomes available they will contact me. I can also contact them if anything comes up medically in my family tree and they will add it and advise. I came home and it was almost time to pick Ellie up from the bus - Dad and the boys came with and Nick drove in the Jeep with T. This made Dad a bit nervous - Nick driving and not having clear boundaries. Ellie did homework and Jo came to pick T up and then Mom and Dad left. I got a call from Dr. Muldoon who also didn't provide a wealth of security - he said he would check everything out at my appointment next week. It was likely that a ball of mucus loosened and passed and this is normal because my intestines are still living. Rob came home with a huge box for the kids to play with - the new entertainment for the week. Ellie and I left for pottery but not without Nick flipping out because we didn't take him. Ellie and I glazed and then made very similar bowl - I made mine and then Ellie decided it looked cool and made hers. We were able to pick up quite a few pieces that had been fired and were ready to take home. Ellie finally glazed her horse (about a year old) and took it home tonight. We picked up Dengeos on the way home I need to hit the grocery store tomorrow. We ate dinner and watched the first few couples on Dancing with the Stars before going up to bed. Both kids were asleep pretty quickly and then Rob and I were able to come down and watch the last few couples. I noticed while showering today that my feet have begun to shed another layer off - wonderful. TMI moment - my butt is officially sore and I can only imagine how very sore it will be after the reversal. Visualising my healthy and continually healing body and the new normal, Tree

So long Sunday

It was a late night last night because I wasn't tired - I went up to bed around 3AM. Nick woke up early - around 6:45 and was ready to go. Rob woke up around 7 and took the kids down to play and have breakfast. I went back to bed for about an hour. I had some coffee and breakfast, read the newspaper and then got the dining room table cleared off. I got the kids dressed and Rob took them outside for some fresh air. I talked to Christi for a few minutes comparing notes from spring break and confirming lunch orders for Su'nana and Catherine. Ellie was a super duper helper this morning. She got the kids table set up for Nick's party and got the crafts ready. Rob went to pick up lunch and Nick's guests arrived. Jo and Tony were first to arrive and then Christi dropped off the girls. Rob got home with food just in time for the kids to sit down and have hot food. After lunch the kids decorated wooden trains and we played pin the #1 on Thomas and put on Thomas tattoos. We opened up Thomas crackers and then had cupcakes for dessert. We ended Nick's party outside with bikes and scooters. We had a bit of down time before heading over to Mom's house for Family Sunday - we were celebrating Tony' birthday today. Mom had all T's favorite foods for dinner - mac and cheese, pizza, fruit, there was salad and ham and Grandma GG brought pork and stuffed shells. Jo had a death by chocolate cake for Tony. Needless to say, I thought I was done with the dual emptying until I ate dinner. I did some research and did find some posts to forums about the ability to have an active colon and an ileostomy and yes it is possible. One man said his doctor told him it was neurological and it was the waking up of his colon. Wonderful, I am glad my colon is awake now maybe it can nap until my reversal. Mom and I changed out Scarlett - she is not very happy right now - a bit of breakdown and tiny bit of blood today. I am placing my last order for supplies tomorrow. We came home and I really wasn't feeling great - I got PJs on and took a couple advil and set the hot pad and laid down on the couch. Ellie came and cuddled with me and then Nick came in too. We watched Monsters, Inc. and let the kids stay up a bit longer to finish the movie. I took a bit of a nap while they watched. Ellie went to sleep quickly, Nick not so much. I am listening to the huge storm moving through right now and was surprised that the temperature the news was reporting - 72 degrees? It was only 55 when we went over to Mom's tonight - must have risen. The thunder and lightening are very aggressive - wonder who will get up and who will sleep though the storm? I have my genetic counseling appointment tomorrow afternoon - interested to hear what he has to say. Visualising my healthy and continually healing body and the new normal, Tree

Still foolin with me

I believe I might me ativan free now, haven't had it in a few nights now. I went up to bed around 2AM and dreamed of waking up healed. Rob went downstairs with the kids and I slept in. Unfortunately, the dreaming didn't work. We hung out here all day. Rob worked with Ellie to finish up the cabinet downstairs and trim it out - looks marvelous. Ellie, Nick and I put up Easter decorations. Each of them got a window to hang Easter clings up on and I strung out the lights and put out all the singing plush - I think we have more for Easter than any other holiday. Rob had to tape a soccer game today - so he left a bit after lunch and then Ellie went out with Mom and Dad. Nick and I played with trains and read some books and watched a video. Rob got home and finished up the base of the cabinet and got the tiles back down on the floor. I love it - we made one section just a huge bin for dress up clothes and we were able to get rid of the huge toy box that the clothes were in. Rob took Nick outside to play for a bit. I gave Nick a bath - poor kids, his arm where he got the shots yesterday is not only bruised but is completely red and hot. While Rob showered I got dinner ready for us, Ellie was staying at Mom and Dad's for dinner. Nick went to sleep quickly and Rob and I watched crappy cable. Ellie came home and told us about all her adventures and then Rob took her up to bed. Rob just went up to bed himself and I am not tired - could be a long night. We got the house cleaned up a bit this morning for Nick's party tomorrow, we are having Tony and Su'nana over to celebrate. So at least my washroom trips slowed today and I wasn't rushing to the washroom - still sucks! I ate a fiber filled dinner and I am hoping that paired with yogurt and a double dose of probiotics fixes this. I guess I can find a positive in this - I know the nerves still work, I am getting a bit of a preview of what is in store next month. Visualising my healthy and continually healing body and the new normal, Tree

April fools - Oh crap - literally

This post falls into the TMI (too much information) category and it is 100% honest no joking here. So I woke up this morning and Scarlett's bag was puffed out to full capacity. I thought it was a bit odd but didn't really give it too much thought. I have eaten an apple at midnight and I don't usually eat that late. All morning long I had gas pain but lower than Scarlett - not possible or is it? I got the kids dressed and then we headed off to Dr. Swider for their physicals. Everyone is healthy and growing leaps and bounds - Ellie is 4'9" and Nick is 3'5" tall. Nick was due for a few shots and we decided to split them up - some today and some next year. Ellie told him he was getting shots and he freaked out. They also did an eye exam and suggested we go see an optometrist because Nick couldn't make out the lower lines but I think it might also have been shot shock. The nurse got him (and me) into position and injected the shots - instant screaming pain. We left and walked to the bakery for a treat and I carried Nick who kept crying out that his arm hurt so much. I had to put him down about halfway there because my tummy was bothering me. It felt completely like gas pain - again, not possible? We went to KidSnips for our appointment for Nick to get his haircut and I really started to not feel so good. I didn't quite know if I was going to vomit, pass out or what but I knew it wasn't good. Nick got his haircut and then we went to Mom's house to watch Tangled and just chill out. When we got to Mom's we changed out Scarlett and I mentioned the pain and noted that my stomach looked puffy. Not too long after that I had a feeling I haven't had in about 7 months - the feeling like I needed to sit on the toilet - poop feeling. TMI - I sat on the toilet and sure enough I was able to poop - holy shit - literally. How can I have an ileostomy and have bowel function? hasn't happened in nearly 7 months why today - April Fools? I guess when you name your medical devices they become independent thinkers and start playing jokes on you. I told Mom and she told me to call Jen. I did and I love how Jen makes each of my frantic calls seem like she has heard the exact same thing about 5 dozen times that day. Jen assured me that with a loop ileostomy, which I have, that the colon is not completely shut off and food/liquid can still make there way down and out. I didn't find it amusing - I was a bit disgusted and thought it really wasn't fair to have an active ileostomy and now an active colon. Well, the short of it - I have not spent this much time on the toilet since last summer - I hate it. Mom reminded me property taxes were due today and I hadn't paid ours yet so I told the kids to get their stuff together and I visited the toilet a final time before we ventured home. More jokes - apparently, just over 320 days since my last period my ovaries might have started to work again - seriously? I so feel mad with my body right now. I realize that all of this is good - this means my body is healing and recovering, however, I had accepted that I was basically in menopause - this could suck. We came home and I paid the taxes online and then I talked Nick into some snuggle time - he was still complaining his arm hurt. I put the hot pad on high and Nick on my lap and the blanket on top of us and we watched cartoons. Ellie played downstairs with her dollhouse. Around 5:30 Rob came home saturated from the Cubs game. Sadly (not), the Cubs lost and the Sox won today. Rob took a shower and then we caught up on the days 'news'. I eventually took a ride to pick up dinner - I thought I would try a baked potato. We ate dinner and then we got the kiddos ready for bed - time to start getting back on a schedule. While toilet runs have slowed down they still exist - still sucks. If I didn't have so much scheduled already for April I would really consider having the reversal sooner. I am so tired and while I was freezing most of the day I am now feeling a bit warm. So, as I said before, this is no April Fools joke - this was my body's joke for me today - irony. Needless to say my hands and feet were really not on my mind today - bigger problems existed. Hopefully the rest of the weekend is un-eventful. Visualising my healthy and continually healing body and the new normal, Tree