Opening weekend in Michigan

I honestly can't recall all that has happened since Thursday - so this will be the highlights post. On a positive note my radiation treatments really seem to be very quick now - Mom was able to drop me at the door, run to the post office and we were almost perfectly timed for pick-up. On a negative note some pesky side effects are starting.
Ellie had a half day Friday and Rob took a half day so we got to start our ride to Michigan a bit early - not that it really helped still over 3 hours in the car. Jo, Ole and Tony decided to finally take us up on our offer (and constant begging) and join us for some of the weekend - they had the ride from hell, though - over 5 hours.
The new kitchen is awesome - somehow removing the wall seems to have tripled our space. The cabinets look great, Rob did a great job on picking out the tile and installing it and the limestone counter tops are stellar. The original plan for the weekend was to wash everything from the kitchen and get the kitchen re-organized, however, our contractor still needs to sand the ceiling and prime and paint so that would be counter-productive. I ran to get some groceries and Ellie took it upon herself to wash silverware and pans for the weekend (nice surprise). Jo and Ole didn't arrive until late Friday but we let the kids stay up to see them. We all headed to bed shortly after they arrived. Nick fell out of his newly converted crib to toddler bed during the night.
Saturday we divided and conquered. Jo and I took the kids and went to try to find a new kitchen garbage can and the ceiling fan and pendant lights for the kitchen - we ended up with a scooter, a matchbox car garage and a child size sombrero - thank you Goodwill. The boys did some work around the cottage and then took their own road trip. The gang all went down to the beach for a couple hours so I could nap on the couch. How would have thought Memorial Day weekend would be a beach weekend? Jo and I went into town to look for light again (found the pendants at Menards) and for sides for dinner. We ended up doing some damage at Walmart - we found Toy Story cowboy boots for Nick and Tony on clearance and High School Musical shoes for Ellie. Jo found her treasured purchase - adult size jellie sandals. We laughed so much I cried. We went to the soda bar for some ice cream and I came back not feeling so well. Everyone was over tired from the previous night so the kids went to bed early.
Sunday we also divided and conquered. We went up to Holland (in hopes of some jellie sandals in other colors) and the boys road tripped for some car rims. No real finds on this adventure - I did get the kids bathing suits for the beach and I got a pair of gym shoes. We shared lunch together before Jo, Ole and Tony left us to got back to Chicago. Rob took the kids to the beach so I could get my afternoon nap in. We visited with the neighbors when they got back - Ellie played with their girls. We had some dinner and then went into Menards to see if we could make a couple more decisions. We lucked out - found a ceiling fan we both liked and cabinet pulls for the kitchen. We stopped at Nemo's for some ice cream and headed back for the sunset - and it was beautiful.
Today was the worst day for me. I just generally didn't feel good I alternated between crampy yuck to just a bad stomach/head ache. We cleaned up the cottage, our contractor came over for his "to do" list - which seemed to grow this weekend. We got on the road right before the rain started and then it rained the entire trip home. Another 3 + hour ride - this one I really felt. The kids are nuts right now and its bedtime - so I better close up. Visualizing my health body - my normal body - my pain free body. Hope everyone had a very nice weekend, Tree

Second day down

So, by the end of dinner last night I had a garbage can by my side - my stomach was not feeling well at all. I took my evening dose of xeloda and tried one of the anti-nausea pills - I was hoping for the best. Compazine could be my new best friend - by the time Rob got down from putting Ellie to sleep my stomach was settled and I was feeling better.

Typical morning - got Ellie on the bus, ate some breakfast, took my meds and it was time to go to Mom's. I woke up with my killer cramps again - I'm not sure what they are all about bu they are so intense I actually have to bend down and stop what I am doing until they pass. Mom, Nick and Tony were coming with me today to keep me company. Each of the boys had a bag with a book, fruit snacks, a car and their sippy cup (Nick also had a comb to make his hair crazy - not really sure about this one). On the way down the long hall to the waiting room Mom and I both thought Nick lost something out of his bag - when we looked down to see what it was - it was the biggest cockroach we have ever seen. It just sat there for a moment and then eventually crept its way through the doorjamb - gross. Mom and both agreed we would never put anything on the floor at the hospital again. I checked in and didn't even have a chance to sit down before they called my name.

I know the routine now so I just walked in and got on the table - it went so quickly today. I asked about the cramps and they said they didn't feel they were a side effect of the radiation but to keep note of when they happen. We left the hospital and decided to take a road trip since I was still feeling good. We went to Party City - picked up some squirt guns and then went to Garden Fresh for some produce. We headed home because the boys were both very cranky. Tony fell asleep in the car - I tried to fall asleep and Nick looked like he might fall asleep. Nick and I decided to head home for lunch and a nap.

We got Ellie off the bus and came inside until Rob got home from work. Tonight was the end of the school picnic at Ellie's school. We walked over there and got there early so we were able to get seats at a table to eat. Ellie and Nick went through the obstacle course a couple times and the jumpy jump and played at the playground. I started not feeling so well so we decided not to wait for the firetruck and walked home. Today, I can tell you where the "x" marks are on my butt - doesn't hold a bunch of promise for another 5 weeks of treatment. It alternates between a sunburn like feeling to a feeling of a small drill bit penetrating my skin. I took my evening xeloda and a compazine and the combo isn't working as well as it did last night - still feel like I might vomit at any moment. I am sure I will figure out the drug combo thing eventually but right now I don't feel safe popping multiple pills. I kind of have a headache but I fear advil or tylenol might push my stomach over.

We are headed to Michigan tomorrow - so I won't be able to post until Monday. I hope everyone has a wonderful long Memorial Day weekend. I am visualising my calm stomach, my ache free head and my healthy body, Tree

First treatment down - 34 to go

Millietime provided some much needed laughter last night. The pineapple vodka was not as addicting as I remembered - it could be because I have become a lightweight or it could have just been nerves. We stayed late but we were all having so much fun. Came home and it was bedtime for the kids. Rob and I watched Parenthood and then it was bedtime for us. Even though I was dead tired I couldn't fall asleep - nerves.
Ellie and I managed our normal morning time but Nick slept in - until he fell out of bed. He hasn't fallen out of bed like ever and he totally was not happy to be woken up that way - I don't blame him. I got Ellie out to the bus and fixed breakfast for myself - with the xeloda I need to eat 30 minutes prior to taking it. I fixed some toast and eggs and waited 30 minutes. I took the time to load my xeloda pill box with the next weeks worth of doses. Finally it was time to take the pills - these are not horse size pills but they aren't baby pills either - I decided to take the pills one at a time and that seemed to work.
Nick and I headed to Mom's for "Morning Club" and that is when my tummy started to feel unsettled - I am sure it was nerves for the day but it never really went away all day. I had a cup of tea thinking that would help and then finally departed for my first radiation treatment. I got to the hospital and checked in and waited in the waiting room until I was called. I was taken to the same nice room as yesterday - treatment room 2. I noticed a screen hanging from the ceiling - I kind of felt like a celebrity - it told them how to set up the table for ME. Blue triangle pillow covered with two pillow cases, sheet on table, sheet covering legs... wow. I was told it would be just like the day before - climb on the table and pull pants down, they would move me - I should just lie still. As if I seriously don't have enough marks, tattoos and stickers on my ass right now they then told me for quality control they would be placing a diode on there too. I was moved left and right and pulled up and down and then they said they were ready. The treatment itself was probably only 8 minutes - same airplane sounds except the errrr noise lasted about 30 seconds at a time today.
They said I was done and they would see me tomorrow. I went back to Mom's and Nick and Tony were having movie time and eating popcorn. I was still feeling a bit queasy - that feeling hasn't left. We ate some lunch - I tried to close my eyes for a bit but the boys were too busy having fun. Nick and I came home and the mailman delivered our copy of Chitty Chitty bang Bang today - so I quickly played it and was able to lay down for a bit before getting Ellie off the bus.
Ellie and Nick played out with the neighbors and had a bunch of fun. Mom just arrived for dinner and helped the kids chocolate dip cookies and fruit for dessert - now its clean up time. I am trying to find something I can drink that doesn't make my tummy rumble. Dad is picking up dinner on his way here and then I hope the kids will want to go to bed early because that is what I want to do. I did share with Mom today that in the last 3 weeks about 2 dozen people have seen my butt - some very up close and personal - some just from across a room - but I am thinking about giving up all my pants and trading them in for chaps after this is all done and through with - I am getting pretty comfortable bearing all.
All in all - first day not bad - just exhausted. The therapist ended the appointment saying one down - 27 to go (that is on the radiation front) and on the xeloda front one down - 34 to go. Visualizing my shrinking tumor (as we speak) and my healthy body - and sleep. Thanks to all my family and friends for your loving wishes today, Tree

Someone let a toddler loose with a permanent marker

It was just such oppressive heat and humidity last night - it took a long time to get comfortable enough to fall asleep. Rob and I watched the CSI Miami - I really could care less if only a couple people survive - maybe then the show would be interesting again.
Nick had a bad night - woke a couple times crying - I think it was heat related - he drank some water each time and tried to get comfortable. Ellie had her veramyst again and had a normal night. It is "snowing" cotton seeds here - the worst I have seen in years - the grass is white - no help for the seasonal allergy people.
Ellie headed out to school and I gave Nick a bath before we headed to Mom's aka Morning Club. Talk about the difference a couple weeks make - today he kept asking if I was leaving yet - as in he had things to do and I was taking up his time - too funny. I headed off to my home away from home for my dress rehearsal appointment. Jenny came and found me in the waiting room and brought me into a new room. It was a beautiful room - had a couple windows and a huge stained glass box on the ceiling - unfortunately, I lay on my stomach and got to look at my hands for the rehearsal. I asked Jenny about clothing - like what I should wear vs. not wear to my appointments and she said it didn't really matter. So, I said the radiation will just go through the clothing - cool - and that's where she said nope - you'll just slip your pants down for the radiation. She then informed me that after all this she'll be able to pick me out by my butt - lovely.
So, I got on the table - I do say table - there is no padding - its a solid wood board - not incredibly comfortable. They had a sheet on the table and then placed one on top of me when I slid my pants down. I got the same "massage" pillow for my head to lay on and my arms to tuck under and the prop for my feet. The other therapist then told me there were going to move me into position - I should just lay still - so moving the bottom sheet they moved me where they wanted me. I was told to lie perfectly still and the machines arms would move around me and in and out - allrighty. Then they began. I felt like I was the body of an airplane and the machine arms were my wings and landing gear - it honestly sounded just like when the pilot is adjusting the wing gear for takeoff or landing except about once every minute you would hear the errr sound of a x-ray being taken. I think they took about a dozen x-rays. Then they came back in and asked if I was allergic to any tape - I mentioned the paper tape doesn't seem to agree with me and then I felt them attaching large pieces of tape to my butt and back. I heard a marker mentioned and tattoos. I am still face down. I can feel the wetness of being marked by a marker and Jenny calling off numbers to the other therapist marking. Then one of the therapist came over and showed me this circular sticker and told me they would be attaching those as well and I should keep them on while showering and they would just replace them when needed. I was told the marks, tattoos and stickers make my life easier because it allows them to do their job quicker - okay. I got to see a couple of the images the physicist had done - very anatomical and right out the textbook for anatomy. I got dressed and met Becky to schedule the next 5 weeks of my life - 10:15 - if anyone is looking for me Monday - Friday at 10:15 - I'll be in radiation.
I picked up lunch and headed to Mom's. Nick was helping her with some cooking. So, without checking in the mirror first I turned around and asked Mom about the stickers - she said the sticker wasn't as bad as the marks. I quickly went to seek out a mirror - I have about a 3" mark leading up from the crack of my butt and some cross lines of that - I have two rather large "x" marks on my cheeks - this certainly does nothing to make my butt an object of attraction. Back at Mom's we were planning for Millietime tonight - a group of my Mom's buds and their girls - our extended family. Mom was planning to make margaritas but that didn't sound too appealing so I went looking for other things and found a full bottle of pineapple vodka - Mom and I bought it a couple years ago at Sams Liquors and we could never find it anywhere else - so smooth. Definitely looking forward to that over some ice.
I am now about to head back to Mom's for the evening and thought I would be much more level headed in writing before the pineapple vodka than after - but who knows. Tomorrow is it - I start taking the xeloda and going for daily radiation to shrink this tumor. Visualizing my healthy body and looking forward to some good girl talk, Tree

Sick day at the Henderson's

So, last night when I was giving the Nick and Ellie their vitamins and allergy medications - Ellie's nose spray only had one puff in it - we needed 4. I gave her a zyrtec instead - it worked successfully for years before we went to the allergist and got this prescription nose spray.
Since all our favorite Sunday night dramas have finished we watched our netflix - Post Grad. It was stupid humor - kind of what I needed. We watched some of the news and went up to bed. Around 4AM Nick was moaning so I went in to check on him and he had tossed off his covers - so I recovered him. About 4:30AM Ellie got out of bed to use the washroom - upon getting back into bed I heard the coughing begin - the post nasal drip bad cough. Ellie had started her bad mucus vomiting - sick day at the Henderson's.
We all got up around 7:15AM - I emailed Ellie's teacher and the school nurse and the allergist to get a refill. We all relaxed on the couch and watched cartoons. It was Nick's last Parent's Day Off class today but Ellie was still hugging a bucket so we passed on class. I suddenly wasn't feeling so hot myself. My whole body started aching and then it felt like I was having contractions - no they were just really horrible cramps. The aches and the cramps lasted through advil and the hot pad - eventually I just put mind over matter and got up. Ellie was starting to feel better a bit before lunch time. Nick just dealt with the situation and deconstructed the house. He emptied every puzzle onto the floor, dumped multiple bins of toys looking for "the one" toy and then spilled 30 ounces of water down the bookshelf and wall - ahhhhhh. Mom came over in the afternoon for a visit.
Ellie and Mom sorted Ellie's art box and we sat at the table eating some yummy havarti with dill. We stayed in our jammies all day. Our landscapers were here to make the lawn pretty again (still haven't gotten the sparkplug installed in our mower). Unfortunately, our two transplants don't look so healthy right now - I'm sure the 90 degree heat isn't helping out. However, the stone walkway is now permanent and looks lovely.
Had a long phone call from an old friend. Eventually, I had to get dressed to pick-up Ellie's prescription and get some groceries. Rob took Ellie to her last swimming class (I was hoping she had enough energy - she did) and Nick and I went shopping. While at the produce store when I was placing apples in a bag I noticed Nick eating something - wouldn't you know it - he was already into the fruit I had put in the cart - unwashed - ewwww! I have now started tying the bags as I put them into the cart.
We had dinner and put the kids to bed. Rob and I are both exhausted - the heat and humidity outside doesn't help. Tomorrow is my dress rehearsal and then onto the big event. Visualizing my healthy body - have a nice night family and friends, Tree

I'm gonna soak up to sun

Better night last night - Rob and I actually went up early and slept well. We were all up early and decided to all go to Church. We hung out after with some dear friends (with their words of tried and true wisdom) at the park. The kids ran around and got completely muddy but fun was had by all. We went home and put the sprinkler on to clean off the kids. Ironically, even in the 90 degree heat the sprinkler was too cold.
We sat outside and watched the kids play and go crazy in the water. I got some lunch together and we had a picnic outside - it was just great to be together and having a wonderful time. We cleaned up lunch (and the kids) and headed inside for a change back into clothing. Ellie and Rob took a walk to the park and Nick and I cuddled on the couch. I snuck a nap in and Nick joined Ellie and Rob outside.
We headed to Mom and Dad's early to get some playtime in before dinner. We celebrated Ole's birthday and ala Ole Mom made a virtual buffet of food. Ellie and Nick watered the plants (and the surrounding people) and played Frisbee. Jo, Ole and Tony arrived (we have missed them this past week while they've been on vacation). The kids loved catching up and playing together. We had dinner and dessert - the new mini drumstick ice cream cones are so cute - perfect size for kids.
We came home and I had presents behind the door. Some good friends dropped off a very cheerful pot of begonias and our neighbor picked us up some juice at Costco. Rob gave Nick a bath and I gave Ellie a shower - our kids had the stinky summer smell going on. Switched loads of laundry, Rob and Ellie headed up to bed and Nick fell asleep in my arms.
All in all a great day - way too warm for me - I like the 70 degree days. Less than 72 hours until my first treatment - my stomach is beginning to be in knots. I can't explain it - I know all this has the great goal of shrinking the tumor and getting the tumor to be symmetrical and easier to remove but the thought of the radiation and chemo regime has me a bit anxious and nervous - I hope I will get over it quickly. The greater picture is what I am looking forward to - my cancer free life. Hope everyone had a great weekend - visualizing my healthy body and very thankful for the wonderful friends and family in my life. Tree

What a beautiful day

I slept so terribly last night - I blamed the wine/ativan combo but my Mom is still trying to convince me its the stress streaming through my body. Rob was up and out early and I called Mom and Dad's to check on the overnight status.
I headed over to their house and got the kids dressed - we had some big fishing plans for the morning. We got the snack bag packed, the tackle box, Ellie's rod and Nick proudly had his fish backpack on his back. We got to the park and Dad baited Ellie's rod - we made the decision that nick would just have a weight and bob (for every one's safety - it was his first time fishing). Ellie has gotten real good at casting - I was super impressed. Unfortunately, the fish were not biting for us today - Dad did have something deep snag the hook but nothing came up but the line. We finally packed in the fishing equipment and picked up some lunch.
We had a nice lunch together at Mom's and then Dad took the kids to a couple parks. I headed to the deck for the last couple days of vitamin D I am allowed. I tried to nap out there but the neighbors were getting their lawn done and then the ice cream truck went by and then the birds were loud. I finally got too hot and headed to the couch for a nap. Dad and the kids came home about the same time Rob let me know he was home.
We came home and Ellie played outside with Rob while I tried to convince Nick to have some quiet time - not much luck. We finally decided on a walk and I remembered it was Skokie Festival of Cultures this weekend - so that's where we headed. The library was handing out little spinning dootie boppies. We walked around and ended up with Mexican food - Ellie really wanted the pierogis from the Polish place but I was watching the lady cook the potato pancake in about 5 ounces of oil. We ate our yummy tacos (the only thing that could have made them better would have been some El Famous salsa). We went through a couple of the tents and got a bag from Public Works with flower seeds and a Frisbee, the kids got temporary tattoos from another booth. We walked home to open the new box of popsicles - pretty tasty. Needless to say after the popsicles a bath was much needed.
Nick was very disappointed that his "dog" went down the drain - I didn't understand at first but then he showed me his hand where his "dog" tattoo was and tears were streaming down his face. Nick went to bed speedy quick after that - poor kid. Now, Rob and I are watching Ferris Bullers Day Off and maybe we will watch our new netflix. Well, I guess that is about all - took the day off from being nervous and scared - I still have a couple more of those available. Visualizing my healthy body and a sunny Sunday, Tree

A morning at the hospital

I couldn't watch Grey's Anatomy last night. I watched the first 10 minutes and then felt a heat in my stomach - a bit too much drama for me right now. Rob and Ellie came home from the fashion show around 8:45 and he tucked her in.
Ellie had a 1/2 day at school today but her best bud invited her to an open gym play time after school. Nick and I headed to Mom's right after Ellie got on the bus - I had to be at the hospital by 9:15. I got to my simulation appointment and waited in the waiting room for a bit - overhearing some entertainment conversations. Dr. Nanda came into to make sure I didn't have any final questions - I asked about the stomach vs. back radiation and if laying on my stomach couldn't fry other organs. He assured me the majority of the radiation would be pointed directly and that he has seen better skin results with stomach vs. back. Jenny, the radiation simulation nurse came to get me. We walked down the the "control room". The big CT scan machine was center stage and she had me climb up on the table and arrange myself like I would when having a massage. There was a cut out pillow for me to place my face in and my arms under and then she proped my feet. Jenny marked my back/sides in a couple places with pen and bbs and attached an adhesive sticker (similar to bitewing x-rays the dentist uses) to my butt. I was told to lie still and was pulled through the scanner about a dozen times - a couple times Jenny came to re-arrange the marks. Finally she told me I was finished and she would do my permanent tattoos. I have 3 - the one on my right and in the middle of my back are smaller than the one on my left - I am hoping the ink might have just bled. So, that experience confirmed I am not a tattoo person and won't be making these marks into flowers, names or gnomes. The second confirmation I received from this experience is that I will not be getting a brazilian wax - ever - the 1,2,3 countdown does nothing for preparing you for the adhesive about to pulled from you.
Jenny had set-up my dress rehearsal appointment for next Tuesday - a series of final films and a fry run through - I will start on Wednesday. I walked over to Kellogg for my appointment with Margaret. She met me in the lobby and we went up to a room. She had an armload of information for me. I had this pouch of xeloda info and such - including a 7 day pill box just for my xeloda. Margaret explained to me that they have found that if the xeloda is stored with other medication it will "eat" through the other medication - wonderful - will it be eating through me? There was even a Betty Crocker cookbook - Cooking for Cancer - really Betty? There was a tube of lotion to keep my hands and feet moisturized. In another bag were handouts on melanoma and samples of sunscreen - vitamin D is on the back burner for the next 6 weeks. There was a huge pamphlet from chemotherapy. Margaret then walked me down to the pharmacy to pick up my prescriptions. The pharmacist talked me through everything and gave me the same talk my ob/gyn gave me years back - try to stay ahead of the symptoms. Now, in addition to packing the snack bag for the kids I will apparently be packing my "what if" bag of drugs and saltines.
Margaret led me down the hall to meet with the dietitian - not my new best friend dietitian. I guess I was looking for something more from her or just something different - not a sample of ensure. I finally got on my way back to Mom's. Mom made Nick and Ellie their summer blankets today - Nick has Bob the Builder and Ellie has High School Musical. Mom made Nick and me some eggs for lunch and then we were off to pick up Ellie from her playtime.
I crashed when we came home - Nick ran amok, Ellie read some of her new books and did some art. Mom called and somehow wanted to take Ellie and Nick for a sleepover tonight - they were thrilled. When Rob got home from work I packed the kids up and we dropped them at Mom's (except we forgot their new blankets). Rob and I went out for dinner before a thrilling trip to Target to pick up necessities - paper towels, detergent, fast acting acid reducers and popsicles. Mom called to say the blankets were needed so we were on our way back to drop those off.
Rob and I are now home, each on our laptops and enjoying a glass of cab/merlot. I am getting a bit anxious about next week - this plan sounded great the last couple weeks but now that I have all the pills and know all the side effects I am a bit scared, too. I'm going to go enjoy our night sans kids - visualizing my healthy body, love to all, Tree

Clean teeth but oh so tired

Normal night last night except I find that I am needing to go to bed a bit before 10:00 now - or it could just be that television stinks so much its not worth staying awake the last 10 minutes of the show. Rob and I both tossed and turned last night - I think the house was too warm.

Normal morning but Nick actually slept in until 7:00. Since my dental appointment wasn't until 11:30 Nick and I got to hang out this morning and watch some of his favorite cartoons on disney channel. We were off to Mom's with our bag 'o goodies. When it was time for me to leave he gave me my kiss and hug and went to stand in the window to wave goodbye to the car.
I got to my appointment and Dr. Gallai met me in the waiting room with compassion and asked what kind of cancer. We talked for a couple minutes about my diagnosis and what led to it. I asked him about the mouth sores and he said he hasn't heard of that side effect before - promising? We talked about what the plan was and about the kids and Rob. I left with an ultra clean mouth that holds promise of fighting bacteria and icky germs off. I even got a couple samples of biotene (the oral hygiene product that Margaret recommended).
I went back to Mom's and we hit the road to pick up lunch and make a stop at Jo-Ann fabrics. My ovaries have decided that since they might be getting the short end of the stick soon that they would let me know they still work - ahhhh. I don't know if it is just the effect of 5 months without coffee and having it 2 days in a row or just my body finally deciding its been abused or my ovaries going into overdrive or a combination of any or all of the above - but I am exhausted today - I feel like I need toothpicks to keep my eyes open. I was so hoping Nick would cuddle up with me on the couch and fall asleep - no luck. We got Ellie from the bus stop and she already had plans to play with our neighbor but I knew there was no way I could stay awake outside - she was frustrated with me. Finally Nick kind of got out of control and I told her she could go - I opened the windows so I could hear them play.
Rob came home and took Nick out for a bit but Nick decided the neighborhood (more importantly his tummy) needed popsicles but there was only one in the freezer and he somehow thought this was still a fair plan. Its just been one of those nights - I am ready to crawl into bed. Rob has to work an event at Niles West tonight and he and Ellie arranged last night that she would go with him - so they have both left. Nick has a pile of books he wants me to read to him and its growing so I better close this post up. I have my simulation tomorrow morning and a quick meeting with Margaret to pick up all my meds and get a quick tutorial on what is what and when to take what. I have been playing phone tag with the dietitian - who I really do want to talk to - maybe I will see if she is available while I'm there tomorrow. Nighty night - hope everyone sleeps well. I am going to visualize my healthy body and drift into dreamland - love ya, Tree

Let's get this ball rolling already

After I posted last night I was helping Ellie brush her hair and she asked about my appointment. I told her I got to visit the Kellogg Cancer Care Center and her face went white and mouth fell open, "You have cancer?" I said yes but its just a diagnosis - a word - just like she has asthma, just like Nick has allergies. I told her it is one of many words people might use to describe what I have. I was scared of the word and her reaction and I have to say it played out the same way I had imagined it might but now I don't have to worry that someone might discuss my "cancer" in front of her and I got to tell her my way. I explained that my BFN (best friend nurse) Margaret said that Ellie could come for a tour of the center or even come with to my next appointment. Sleep went well again - I think I finally got this thing down.
Usual morning here, got Ellie off to school, packed Nick's stuff for Mom's and we were off. We got settled in and I was off to the hospital to have my consult with Dr. Nanda, my radiation oncologist. I have to say of all the consults I have had - this was the closest to what I envisioned a consult to be. Comfy, plush chairs - not a desk but a table, a magazine rack (it was in an exam room with a table and medical equipment but pretty okay). The nurse took my vitals (weight, temp, pulse and blood pressure) and then Dr. Nanda came in. He read through his notes on my history and asked if he was missing anything - nope he got it all. He explained radiation therapy to me. He asked about my fertility - there is a pretty good chance my ovaries will be damaged by the radiation which in all possibilities could send me into a very premature menopause - humph!!! He told me of the possible and probable side effects, tiredness, fatigue, localized hair loss of the treated area, reddening like sunburn, diarrhea. Sounds like so much fun - this is where the I got to get sicker to get better comes in. He told me if there is anything I have heard from him, Dr. Marsh or Dr. Muldoon that doesn't sound right that now is the time to get a second opinion - I told him I was happy with the plan and ready to move forward.
He told me I would be receiving 28 treatments and that the treatment itself will only last about 10 minutes but the prep for the treatment takes about 10-15 minutes. I set up an appointment to meet with him on Friday for my simulation - I will be run through the CT scan for a series of x-rays that will pinpoint exactly where I need to be radiated. I will be tattooed (yes they are permanent marks - about the size of freckles). I asked Ellie's question - stomach or back and he thinks maybe we will go stomach but we will see Friday. In telling him how I had cut out my vices in hope that one of them might have been the cause of my GI issues he told me I shouldn't cut out the alcohol and that moderate consumption could be good for me. Hmmm, Mom twisted my arm into coffee yesterday (and today, again) maybe I will have a nice glass of red wine this weekend. After the simulation he will work with a physicist to accurately get a plan in place - he hopes to begin the end of next week.
I went back to Mom's and we headed out to Target to pickup some essentials and then to get some stuff for dinner (we moved Thursday to Wednesday this week). Nick and I came home and waited for Ellie. It was such a nice day that after Ellie did her homework we headed outside for dome vitamin D and fresh air. I got a call from my BFN, Margaret asking how my appointment with Dr. Nanda went and she told me stop by to see her after my appointment on Friday. She also told me my co-pay for my xeloda - Rob asked at our initial consult what price range we were talking about for this drug and she told us a 14 day supply can run $2000.00. Our awesome insurance is kicking in and my entire course (3 - 14 day supplies) co-pay is $40.00 - ironically, that is the exact same co-pay as Ellie's monthly allergy medication.
Tomorrow I see our dentist - one of my favorite people - probably going to be very hard to tell him about all this - I have known him since I was about 4 years old. I am just ready to get this ball rolling - it seems like we've been pushing it uphill for awhile now and I am ready to get to the "thought I could, thought I could" stage. Hope the sun stays bright the rest of the week and warms up a bit more. Positively visualizing my healthy body...Tree

Doctor visits...again

I don't want to jinx it but 2nd night with good drug/sleep timing. Nick woke up early but Ellie slept in. It was Ellie's 2nd grade field trip today - Heritage museum, 1st log cabin and Emily Oaks nature center. Ellie spent most of her morning trying to find her camera, find batteries that worked, find a memory card that wasn't full. We finally decided a disposable was the way to go but it wasn't the perfect choice because it didn't have a flash. Turned out to be an okay compromise because upon exiting the bus this afternoon she told me she dropped it and it didn't really work after that. I got to make Ellie a special brown bag picnic lunch. Nick and I packed a bag for Grandma's house - fruit snacks, the rest of his cereal from breakfast, a couple go-gurts and a few DVDs. We were all on our way.
I was able to have a bit of time at Mom's before I had to leave and was able to get Nick "settled" in. When I said I was leaving to go my doctor appointment he gave me a giant hug and kiss and I promised I would be back before the end of Cars (which had just been put into the DVD player). I got to visit the Evanston Kellogg Cancer Center today - very nice space - I bet even better on a sunny day. My best friend, nurse, Margaret came and found me in the waiting area and we went up to exam room. For years I could go months without weighing myself and now its an every visit occurrence - oh, 1 pound under last appointment. We went down the hall to the room and she started explaining some of the changes I would need to make before my treatment begins. I will have to switch my toothpaste to one that has no whitening, no plaque guard - basically a similar toothpaste to what you might give a baby. If I want to gargle - I should find a mouthwash without alcohol. That is when she informed me about the oral side-effects. Some people get mouth sores (similar to canker sores) and that some people experience sensitivity around the edges of their tongues and that some complain about changes in their taste. This would be why eating and drinking can become difficult and not too interesting and people need to come in for IV fluids and nutrients. So hoping against these side effects. I really eat to survive - I rarely have cravings and to me most food is just food. Saying that, I really hope this doesn't happen to me. I remember being pregnant and having everything taste like something - I can't recall the particulars but everything I ate tasted the same - makes it difficult to keep eating sometimes.
Dr. Marsh joined us and he discussed my PET scan from last week and shared that only my tumor showed up as a "hot spots" he doesn't believe any of my lymph nodes are involved - great news! He sent over a couple more things - I will be more photo-sensitive on the xeloda - therefore, spf 50 is a must. I need to keep my hands, feet and lips extra moisturized to avoid the reddening/peeling that is also a possible side effect. I asked my questions and got all my answers. I will see him again in about 2 weeks but should call him if anything starts bothering me. Since my cancer marker was not remarkable there really won't be a need to monitor that often - I will have blood draws instead to monitor my white blood count. I also found out I will be on the xeloda the entire time - not 14 days on 7 off. Dr. Marsh seems to think all the radiation simulation should be able to be complete by Monday - so the plan is to start both on Monday.
Margaret gave me a tour of the center - I saw where I will eventually have my post-operative chemo treatments and where the drink station is. I met and visited with Sally, my social worker, also, a very nice person. She had pulled a bunch of info for me on cancer and children, as well as schedules for the Cancer Wellness Center and classes on meditation. I stopped by the gift shop and picked up a drum clapping, walking, wind up monkey to entertain Nick and was then on my way back to Mom's.
When I walked into her house it smelled like coffee - something I haven't had in 5 months and it smelled good. I decided this past weekend that I have given up all my vices (in trying to rule out their effect on my body) only to find out they were having no negative effect on me. Mom offered me a cup of coffee and I took her up on it. It could have been an omen but Mom said no - but moments after putting my cup on the table next to me Nick bumped the table and the entire cup spilled. Mom refilled me and it was quite enjoyable - I feel alive -even on this kinda funky, cloudy, cold day - didn't even consider an afternoon nap today. We had lunch together and then Nick and I came home. Nick really loves the movie Chitty Chitty Bang Bang and asked Mom if we could borrow it tonight. So, as we walked in the house he got the DVD out and we put it in. He sings along to all the songs and does the most unusual dancing (I blame Rob totally - some very dear friends and family know what I mean). I called my dentist to see if he could squeeze me in this week because I can't have any dental work done for the next 3 months and he did squeeze me into his schedule - woohoo clean teeth. We got Ellie from the bus stop and now they are both still engrossed in all the is Chitty. Needless to say before typing this I went on Amazon and purchased our own copy - it seriously provides hours of entertainment.
I am really so delighted with the news I received today. I am looking forward to DWTS tonight to see who the final 3 will be (Nicole, Evan and Erin are my guess). Visualizing shrink tumor - much healthier body. I said this to Dr. Marsh today and he repeated it after me and told me positive visualizing is greatly motivating. Have a great Tuesday everyone, Tree

Writing down all my questions

So, I believe I might have found the right timing for the ativan to be effective. I've been taking it about an hour before I want to go up to bed and low and behold - I am relaxed enough to find mr. sandman not too far after.
Normal morning here, got Ellie off to school and Nick and I went to a part of his Parent's Day Off class. We stopped at Mom's after for some playtime with Tony (he's going on vacation for the next week - needed to get our fix in) and lunch. We got Ellie off the bus after school and did homework. It was Ellie's last pottery class tonight - she brought home all her masterpieces. Rob and Ellie are now at swimming class (only one more after tonight's class). Rob is picking up dinner so I decided to use my time to do some cleaning - got the downstairs washroom clean, the living room and play room vacuumed and a couple rooms full of toys properly put away.
I spent a bit of time last night and today on the internet googling stuff. I have a list of questions for Dr. Marsh tomorrow. The chemotherapy drug I will be taking is xeloda - looks like I will take it for 14 days and stop for 7 and have 2-3 rounds of it. I am really hoping for no side effects but the list of side effects seems to linger on a page full so I know I will probably have some. Margaret, my best-friend-nurse, said a lot of people think about eating or drinking and then forget and can't get on top of it and she told me if that is the case to just stop by and she'll hang an IV for an hour - nope, I'll keep up with the hydration. Other side effects are run of the mill - fatigue, nausea, weight-loss due to lack of hydration, muscle pain, stomach problems, hand/foot redness and peeling, dizziness, sleep problems... sounds joyful.
I have also done some reading on radiation therapy and it looks like besides the consult on Wednesday that I might have a couple more appointments to do simulation before the radiation therapy will actually begin.
On a entirely separate thought - who else was cold today? I needed the sun and it kept hiding from me. Visualizing shrink tumor - much healthier body. Have a good night family and friends, Tree

Sunday

I decided last night to try ativan again, so I took one at around 8:30 and low and behold at 9:30 when Rob said he was going up to bed - I followed and actually fell asleep. I also got to sleep in because Rob was home this morning. After some breakfast we went outside to enjoy our day. The kids cruised up and down the sidewalk on bike, skateboard and firetruck. There was some sidewalk chalk action and a try at catching butterflies. Rob tried to mow the lawn but the mower seemed to start but then stopped when he attempted to actually go forward - spark plug time.
We got some lunch and had a picnic outside in back. The kids and I were off to family day at Block Art Museum at Northwestern. They got to make stickers, a memory card game, create masterpieces with sidewalk chalk, blow bubbles and do a bubble art project.
We went to Mom and Dad's after Block and I kept Mom company while Dad took the kids to not 1, not 2 but 3 parks. Rob stayed home to work on some woodworking project. It turns out I wasn't such good company because I ended up falling asleep while Mom made t-shirts for the kids.
I picked up Rob and we picked up dinner - El Famous. When I was pregnant with Nick my only craving was for the red salsa from El Famous - I would just drink it from the containers. The craving has stuck around and I still love their red salsa. We had a nice dinner together and came home for a much needed bath. Ellie and Nick are now in the land of slumber, Rob and I each on our laptops and the neighbor kids still screaming loudly while jumping on their trampoline.
Hey, has anyone had radiation therapy? Are the tattoo markings really permanent? I have my consult this week and it is a 90 minute consult - the longest yet. Got my list of questions developing for the appointments this week. Ready to get this plan moving - visualizing shrink tumor, much healthier body. Hope everyone had a nice weekend - the sunshine was great today. Tree

Just a Typical Rummaging Saturday

The thing about not taking the sleeping pills or the anti-anxiety pills at night is that I have dreams back but they are kind of creepy dreams and I awoke a couple times last night sweating and generally not in a great mood.
The sun wasn't even very bright but the kids were up at 6:45. We ate breakfast and we were on our way to pick up Jo and Tony. The best part of Spring is Saturday rummage sales. It was St. Norbert's in Northbrook - we left with a few bags of puzzles, felt doll clothing pieces, Cars racing cars, a pizza game and some other things that got tossed into the pile and put in the bags. Tony got his new girlfriend, Jessie (from Toy Story 2). Then we went to a Boy Scout Sale in Park Ridge - totally thought we would get some good stuff for the boys but nope it was all girls stuff. Ellie got her Summer wardrobe - all Hanna Andersson and Talbots Kids - 2 full bags for less than $20. Ellie also found a new American Girl arts & craft kit and book - was a total score.
We stopped at Target to pick up some lunch stuff and headed back home. It became pretty obvious that it was nap time but no one wanted to nap. We took the double stroller out of the garage, grabbed a blanket and decided to take a walk - Ellie road along side of us with her bike. I guess it was the novelty of Tony and Nick sitting right next to each other but neither fell asleep. We ended up at the park.
We ended up pulling the sofa bed out and watching some videos. Rob and Dean came home (2 hours earlier than planned!) Jo and Tony got a ride home and we had massive amounts of laundry to put away. I don't know how but it seems to multiply when we need to bring it upstairs. Ellie decided it would be a good time to go through her dresser and take out whatever doesn't fit. Got 2 bags for passing along. Now I am waiting for the water to boil and the oven to finish up for dinner.
Glad to have Rob home - he gets bedtime back. Overall - another really great day. Tree

Wow - a day without doctors

On the fast track again... the social worker yesterday was calling to talk with me about how I could approach my cancer with Ellie. She was make suggestions about bringing the conversation to her level and not leaving out info because she might hear it from somewhere else and it would be better coming from me. I will meet her in person next week after my oncology appointment.
Rob and Dean decided to just get on the road and Dean noticed Ellie was starting to cry. Everyone hugged and kissed goodbye and Rob promised to be back on Saturday instead of Sunday. Ellie's crying eventually led to hyperventilating - must run in our family lately. I asked her what was bothering her and suddenly this string of questions came rushing from her lips. How sick are you? When are you going to be better? Do you need surgery? Whoa, I guess "the talk" was going to happen now.
We sat on the couch together and hashed everything out. She asked when my first appointment was - I told her about 3 weeks ago with my primary. We went through the calendar and I told her the extremely knowledgeable 8 year old version of my last week. She wanted to know how each test worked, who was there, which arm the IV went in on each day. I explained what I know so far about my upcoming treatment - how I will have to get sick to get better. She asked some really incredible questions - things I hadn't even thought about. She wanted to know if I would lay on my stomach or back for my radiation treatments - I don't know now but I will next week. I told her I have the most excellent group of doctors and nurses working in my corner to make me better - she wanted to know how many and each of their names - would she get to meet them? It was the toughest thing I have ever had to do as a Mom (even beat Nick's allergic drug reaction trip to the ER). I asked her to please not worry about me that I will be just fine and back to my normal self in a while - how long? About a year - that is a long time for an 8 year old. We both cried throughout our talk and at the end it did feel good to finally get "my secret" off my chest. I believe knowledge is power and that our talk empowered Ellie to stop worrying.
Mom and Dad came over for Thursday night dinner. Mom read to Ellie and Nick, Nick and Grandpa played trains and then bedtime. Ellie ended the night by telling me she wasn't worried anymore - music to my ears. I even remembered that the tooth fairy needed to visit Ellie's room - usually Rob's job.
I decided to cut out the sleeping pills since they don't really do anything and what do you know? I actually had dreams last night - not good sleep but dreams are positive. The sun was shining way too bright this morning because both the kids were awake at 5:30. We had breakfast, Ellie went to school and then Nick and I went over to Mom's. Nick and Tony played for a bit before we left to do some grocery shopping.
We picked up lunch and pulled into Beck Lake for a impromptu picnic lunch. The boys had a great time watching the canoe and kayak on the lake and all the geese and birds walking around. There was even a family of geese - the Mom and Dad and about a dozen gosling - super cute. We traveled home and got Ellie from the bus stop. We went to the park with our neighbor and played for a while.
We went for a special dinner - I asked Ellie to think about where she wanted to go last night and she came up with Chilis - so that's where we wound up. We had a great time together - that's is all I want from this weekend because I don't know how the next few weeks of treatment are going to go. We stopped by the new Salvation Army thrift store and it was icky - just putting that out there local friends - just keep going and pass it up. We came home and read a few books and I tucked the kids in.
Just a very low key day - probably the calm before the storm but hey, I will take the calm. Hope everyone is having as awesome of a Friday as us - Love to all, Tree

Radioactive!?!? Seriously?!?!

I have given up on sleep for now - the super duper controlled substance sleeping pill does nothing for me. It doesn't make me drowsy, it doesn't lull me to sleep and it doesn't knock me out. The only thing I have found is that once I do actually fall asleep I will get 2-3 hours of a deeper sleep but that is it and then I am up. Needless to day those Disney-esque mice images were just a figment of my imagination - still waking up to my normal day to day messes. Guess I had put too much hope in that scenario.
Going back to how I am convinced the computer flashes some warning to the doctors and nurses that I might have some anxiety issues - I think I can be assured of that today. The doctors and nurse while explaining the PET scan to me yesterday said it was a similar machine to the CT scan, that I would need to be on a low carb diet for the remainder of yesterday and nothing except water for 4 hours prior to the test. They said they would inject a glucose serum in my vein and I would have to be still for about an hour. That is where they stopped and I took their words as truth so I didn't come home and google PET scan - I thought it was a simple little test - they lied, or they didn't tell the whole truth or they neglected some big parts of the story.
When I woke up this morning I was starving and water was doing nothing to squelch my bellowing tummy noises. Poor Ellie went to wait at the bus stop in the pouring rain and luckily our neighbor pulled up and offered her a ride. I was watching from the window as she crossed onto the grass and was nearing the puddle at the curb that stretched out about 5 feet and was saying, "No, no walk down a bit further." but no, she walked right through the huge puddle in her crocs. I got Nick dressed and went over to drop him at Mom's. We had a huge breakthrough today - Nick normally cries (for about 30 seconds) or glues himself to my body and won't release when I try to leave but today I said, "Give me a hug and a kiss - I have to go to the doctor but will be back at lunchtime." He gave me a hug and a kiss and just calmly watched me pull out of the driveway - no tears, no struggles - makes it so much easier on my heart.
I have now been to 3/4 of the Northshore hospital locations in less than a week - I know there isn't a prize involved but I would have taken a sticker. I have to tell the people of Evanston/Skokie that the old Rush Northshore is not like it used to be - very nice, free parking and ER parking right adjacent to the entrance. I checked into radiology and was told someone from nuclear medicine would be with me shortly (1st clue I was suffering from non-disclosure). Jun was my guy today and as we walked through a maze of halls he told me a bit about the PET scan. As we walked further and further I started noticing the radioactive signs (2nd clue). After passing through about 4-5 doorways with the signs we arrived at the PET waiting room. Not glamorous, no pictures on the wall - just a recliner and a typical medical cabinet. Jun reviewed my questionnaire which had asked my test, biopsy, chemo, and radiation history. I had to sign a form saying I wasn't pregnant or nursing (3rd clue). I liked Jun, I told him I had rolling veins and he said it wasn't a problem because he had rolling needles.
Jun then disappeared for a couple minutes and came back with his rolling cart - gauze, needle packs, two syringes full of clear stuff, alcohol wipes and a metal box that he put on the opposite side of the room (strange - clue 4). It took him a couple minutes to find a viable vein but he did and then he told me he was going to start to inject the first vial of radioactive serum (what - I saw the signs but really this is what I am here for?). It was a weird feeling almost like the liquid was going over speed bumps in my vein. He then went and opened his locked (clue 5) metal box and got out a over sized metal syringe that looked like it should be in Ironman - not being injected into me - it was radioactive glucose. Finally the remaining vial of radioactive serum was pushed and the IV needle thing pulled out. Jun then kindly told me in a regular, calm voice that he was going to leave me alone for the next hour because I was radioactive and he really tries to minimize his exposure?!?! He assured when he was turning off the lights and closing the door that I wouldn't glow and that I should try to fall asleep. Seriously, sleep - I have a controlled substance sleeping pill that can't knock me out but hey maybe radioactive crap running through my veins will do the trick.
I closed my eyes and I swear my eyelids were having a rave with glow sticks and psychological inkblot slides - I know it was just my imagination but they looked very real. I sat in my recliner, in the dark counting in my head, thinking about what I need to send with Rob and Dean to Michigan but not sleeping. Jun finally knocked on the door to let me know my hour was up and I could go to the washroom, remove any clothing that has metal and any jewelry I was wearing. He escorted me through another one of those radioactive warning doors and into a very spa like room - except for the big honking machine in the middle of the room. He had me lay on the machine and he covered me with a blanket, removed my bandage and then while strapping me onto the table he explained how important it was to keep very still during the 25 minute test - wait, why I am being restrained onto this table (lost track but another clue). He did the laser test to make sure I was aligned correctly and then once again left to minimize his exposure. I have found it is way easier to just close my eyes and not keep track of the machine - the PET scan machine is open (neither end is closed) but they raise you almost to the top of the underpass and it is much wider than the CT scan machine - almost encompasses your body. I let my mind take me back to Rob and my honeymoon to Sea Island - there was a soothing noise to the machine and there was an air conditioner shooting cool air on either end. Unfortunately, Murphy's law says when you are told you cannot move and restrained so you really can't that is when your eye starts to twitch and feel like ants are making their way to a picnic on your nose. I worked my way through it. Jun came over a speaker and told me only 5 more minutes left.
The scan was finished and he told me the results were already on there way to Dr. Marsh - I should have news this afternoon. Jun walked me through the maze of hallways again and explained I would probably do this scan at least once more but possibly twice. It seems odd to me - I already have this gross tumor in my body and now we're adding radioactive serum, radiation, chemotherapy - I know it all has its purpose but still seems odd.
I called Mom to find out if I could pick lunch up but she had it covered. I somehow was on auto-pilot and that led me to Jewel and I was running in to get some of those breyers brownie ice cream sandwiches and look they have strawberry ones, too. I also ended up with fritos which I had to open in the car because I was pretty sure I wasn't going to be able to drive home without something salty in my tummy. Nick and Tony were a hoot this afternoon between sitting in boxes to watch Toy Story to running around with Gladware containers on their heads - too funny.
When I got home there was a message from Dr. Marsh - so I tried to call him back but ended up leaving a voicemail for my friend Margaret. Not too long later Margaret called me back to say the scan yielded exactly what they expected with the "hot spots" where the tumor is and NOT ANYWHERE ELSE! She also had the results from the cancer marker test - I was 1.1 and the allowable results range all the way up to 5 - another positive.
The sun in shining, Ellie just got off the bus and she pulled another tooth out at school today (she doesn't like when they get loose enough to fall out by themselves). Uncle Dean just arrived, the phone is ringing- its the clinical social worker asking if its a good time to talk...life is back on the fast track.
Rob and Dean are going up to Michigan to start cleaning the house in preparation for Memorial Day weekend and to finish whatever construction is left to do. Got the kids to myself and I am looking forward to a perfect weekend. Tree

We have a plan

As expected - didn't sleep much last night. Got Ellie off on the bus and Nick to my Mom's and then Rob and I were on our way to Glenbrook.
I met with the GI oncologist first, Dr. Marsh - a lovely man and I am very happy with him. He just resonates calm and peace. His nurse, Margaret, could be my new best friend. She seemed to know everything and took care of scheduling some of my appointments next week. After a lengthy discussion about my plan he examined me. Funny thing - until a couple hours ago I really though consult meant a meeting with a doctor in comfy, plush chairs in their office - boy was I mislead - it means vitals, info, more info and an examination.
Dr. Marsh informed me that he has unfortunately seen a huge increase in GI cancer patients in their 20s and 30s in the past couple months -really makes you wonder what is causing this - scary. Starting next week I will begin 5 day a week radiation and 7 day a week oral chemotherapy. He has found there is really no difference in response to oral vs IV chemotherapy pre-operative. This will continue for approximately 5-6 weeks. He explained that radiation therapy continues to work after treatment so my 5-6 weeks will really be like 10-12 weeks worth of effect. I will have 4-5 weeks off to rest and re-coup before surgery. Then after surgery I will have another few weeks of rest and re-coup before 4-5 months of IV chemotherapy.
My next meeting was with my GI surgeon, Dr. Muldoon. Once again consult didn't mean comfy chairs - if fact this "consult" included my newest pick-up line - please disrobe and turn on your left side - not what I was planning. It seemed like I was on a never ending moving walkway today - everyone wanted my vitals, my history, my blood...
Dr. Muldoon re-confirmed the plan and then told us a bit about the surgery. It will be through small slits in my abdomen and will use a robotic arm. I can expect to be in the hospital 4-7 days post surgery. When Rob and I were talking on the way home he told me the scars wouldn't be too bad and the robotic arm was small - I told him I was envisioning the Inspector Gadget arm. I was told I could figure the entire process lasting about a year. Seems like an eternity.
I had blood taken for cancer markers, a vitamin D level and blood count. I will have a PET scan tomorrow - which will just verify that the cancer hasn't decided to seep anywhere else. I have a follow up visit with Dr. Marsh next week to discuss any questions that I might think of prior to starting treatment. I meet with my radiation oncologist next Wednesday to discuss the whole radiation therapy element.
I a very at ease today - there is a plan in place and some questions answered. I feel very confident with the doctors who are working with me. I was delighted that everyone was optimistic. This will be a long road but I am ready to step on and travel it and I know I have a whole bunch of people who will be on the road right along side me and that is also very comforting.
I gotta tell you - I have seen the TV commercial for breyers brownie chocolate ice cream sandwiches and was thinking they looked pretty delectable but I cannot indulge tonight - I am on a lowcarb diet for the scan tomorrow. It's funny - I think the screen must flash at the doctors - this woman has some anxiety issues because Dr. Marsh took time to assure me the test was open and airy and shouldn't send me into hyperventilating. It is just a long test - the message on the answering machine said to expect to be there for 2 hours.
I thank everyone for their positive thoughts, prayers and wishes - they helped out big time today and will continue to get me through this (with my very awesome family). Love to everyone, Tree

Time for positive thoughts

Well - let me begin with the sleeping pill and the effects it didn't have. I took it when I got tired (as the doctor told me to do) and waited about 30 minutes to go up to bed. I got in bed and felt no effect. I counted backward from 100 - 5 times. At one point I shook Rob awake and asked if he was hearing yelling outside. He stumbled awake and looked out the window. I did finally fall asleep about an hour after getting into bed. My sleep was not restful but the fidgety, short spurts that I have become accustomed to.
It seems like so long ago but it has just been a week now that life has been kind of turned around.
It would have been my Grandma's 81st birthday today. She beat so many cancer battles throughout her life and I am seeking her deepest strength today. I went with Mom, Ellie and Nick to the cemetery this afternoon. The new headstone was placed and it was comforting talking to both of my Grandparents.
Mom, Nick and I hung out today - returned some stuff to Kohl's, did some shopping at Target before coming home from lunch and chill out time on the couch.
I am quite sure sleep is not on the agenda tonight - way too many nerves. I am hoping for some wonderfully optimistic words tomorrow. The pathology/cytology came back on some of my nodes and the pathologist was hesitant to say they were malignant. This means that my cancer might possibly be staged at 3 but could be 2.
Rob will be going with me for my 2 appointments - first to meet with the GI oncologist at Kellogg and then to meet with the surgeon. I am asking (I am quite sure the first of many times) for your prayers, positive thoughts and good karma wishes for tomorrow. I am looking forward to the progression - I have been at a standstill for the past week and now we can move forward and have some answers and direction.

Monday - Funday!

I got an ok night of sleep last night - Rob went up early and I stayed up until I felt sleepy and then tried an ativan and sleep came in about 90 minutes.

I went to see my primary today - kind of bizarre. As I said, I haven't seen him in years but he is the one seeing all these test results and is in communication with all these doctors. Nick came with and was a great distraction - blood pressure was normal again 98/58. He talked to me about the findings from last week - old news and I explained that I was still having some trouble sleeping. I probably won't need to see him again until my pre-op work up. He did give me a prescription for a sleeping pill - hopefully it will work. In reading the paperwork that comes with the prescription I have learned its a C-IV controlled substance and should only be used 7-10 days - he gave me a 30 day supply with refills. A funny side effect is getting out of bed while not being fully awake and do an activity that you do not know you are doing - I am thinking this could be Disney-esque (I envision the mice from Cinderella or Sleeping Beauty) could I awaken in the morning to find the laundry done and put away or dishes washed or toilet cleaned? - that would be some special kind of drug.

Nick and I stopped by his "Parents Day Off" class. Needless to say - this parent doesn't want the day off - I would much rather cuddle on the couch all day or play with the kids while I have the energy. We played play-doh for a while and I told another friend, Nick's teacher.

Went to Mom's for Nick's corn pudding fix - even brought some home for dinner. Drove Ellie to pottery class. Pretty normal day. Just waiting for Wednesday...

A Fabulous Mother's Day

Today was just what the doctor ordered - the best medicine I could have asked for.
I did go to church with Ellie and Rob and was very happy that I did. I almost made it out without shedding a tear - actually I think I did - I think I was able to blink it back - just tear wells. I was touched at how many people are behind us in this fight and how many friends are there for us.
We went to Mom and Dad's for Mother's Day brunch. The food was delicious - really the first food I have had in a week and some of all of our favorites. Ellie and Mom made kolacky cookies last night - they were wonderful. Nick had made a request for corn pudding and apparently didn't have enough servings because he wanted more for dinner tonight. There was quiche and bagels and chocolate chip coffee cake.
Dad, Rob and Ole took the kids to the park and Mom, Jo and I were able to hang out on the deck. I painted Jo and Mom's toes and then had quite a good laugh when Jo asked if I wanted mine done and I said no need because I had just done them for my colonoscopy. We soaked up our vitamin d and just had girl time. When the gang came home we played ball in the yard and had a bunch of fun.
We came home and did some watering and the kids played some more and then had a much needed bath. Believe it or not - its just 7 PM and both kids are asleep.
I am thankful for all the wonderful friends I have in my life and really thankful for the awesome family I have. Thanks for making today special.

It's Mother's Day

Yesterday was a fun day - going downtown got our minds off of things for a few hours. The kids really enjoyed - they got to walk through 2 amtrak trains and got a bunch of freebies. The favorite was the big, multi-colored, takes more than a day to eat, willy wonka lolipop. The funniest part was that little Tony made the biggest dent in his. We had lunch together and then all went our separate ways. My Mom and Dad went to my grandparents house to tell the news - there are just a few people I can't bring myself to share my own news with.
Rob, Ellie and Nick all played quietly upstairs so I could nap on the couch for a couple hours. Mom and Dad picked Ellie up for the evening - she wanted to help cook for today. Rob, Nick and I cuddled up and watched Cars. I think I might be getting my hunger back because it took more than yogurt to fill me up last night. Cinnamon toast wasn't too hard to chew and did the trick. Got the kids to sleep and Rob and I watched the first part of Up In The Air. We watched until both our eyes were sore and decided to go up. I don't really know what I was trying to prove or to who but I decided I didn't need an ativan last night - bad mistake. I think the longest bit of sleep I got was 7 minutes. I couldn't get comfortable - too hot, too cold, back hurt, heart raced. When I finally decided this is nuts at 4 AM - Nick startled himself awake and I pulled him into bed with us. Ironically, after getting him back to sleep I was able to sleep for an hour or so.
So, It is Mother's Day - and the kids met me with their beautiful cards that put tears in my eyes. Nick made me a frame at school and Ellie a beautiful planter. I have a feeling this is going to be another real emotional day.
Still debating going to church today - I realize this sounds terrible but I haven't had to walk into a situation where a bunch of people know already and I don't know if I can handle that today. Rob and Ellie are going - I just hope no one mentions cancer in front of Ellie.
Going to Mom and Dad's for Mother's Day brunch later this morning - I think I am actually looking forward to eating.
Happy Mother's Day to all the wonderful women in my life - enjoy the day.

All aboard

I have come to the conclusion sleep might be overrated. Until this last week I would blissfully go to bed and get about 9-10 hours of restful sleep, beauty sleep, re-energizing sleep. Now, I toss and turn, I get hot and cold, I think I can pinpoint where my tumor is resting internally -externally, I think too much and don't really give in to mr. sandman. I fell asleep on the couch in Rob's lap before Miami Medical and woke up at 9:17 - that was my best sleep last night. Oh well, stayed in bed til 7:45 and panicked that I over-slept again and Ellie would be late for school.
We went to the store last night and picked out our counter top color - natural limestone. I tried to finally eat something last night and became immediately aware that either I've been clenching my teeth for the past few days or my body shakes have rattled them - but actually trying to chew was not so comfortable.
May 8th has been marked on our calendar since about January. It is national train day down at union station. For those who don't know our family well, my Dad is the original train nut (he had two girls who he desperately tried to convince to love trains and not dolls - fortunately, both my sister, Jo, and I both have boys now). Dad has turned Nick and Tony (my nephew) into train boys - its their drug of choice - Ellie plays along, too (just like Jo and I did). In about an hour we will board the metra to union station to celebrate national train day. In the past its been my Dad and Ellie who have gone done for the morning and have come home with some real cool things. Dad got tickets for everyone this year - Mom and Dad, Rob and me, Jo and Ole and Ellie, Nick and Tony. I need to pack our snack and beverage bag because I have the kids that get 5 minutes from home and are hungry.
This should be the ultimate distraction for this morning. A funny/ironic thought occured to me this morning. When I was choosing my ob/gyn for both my pregnancies I chose female doctors - a sense of modesty. With Ellie it didn't matter because about 35 doctors, nurses and staff were in the room when she was delivered, with Nick it was a much smaller crowd. With the GI issue I never really gave it too much thought - I am naked just the same and yet I have this crew of males around - even the assistant and the nurses were men. Guess modesty has left the building. On the bright side my arms are starting to not look like blue tie-dye today - more of a washed out yellow-green.
I continue to thank everyone for their thoughts, prayers and phone calls/emails.

just your average Friday

Was up early and got some laundry done. I talked to the social worked at Ellie's school about breaking the news to her and asked for suggestions on how to deal with my overly emotional 8 year old. Stopped by school with a late teacher appreciation bouquet and the children's project.
Went to Mom's house and we decide to refill my empty fridge with some groceries. A delightful trip to Costco and Farm Fresh.
Upon walking in the house from getting Ellie off the bus the phone was ringing. It was Dr. Muldoon - my GI Surgeon. Its the first time I have spoken to him - he asked if I had children and their ages. Asked about family cancer history. Told me to spread the word to family members to go out and get their colonoscopy now. He moved up my appointment - so I now get to see him next Wednesday the 12th. He mentioned that Dr. Marsh - my GI oncologist also has hours that day and with a couple phone calls I was able to move that appointment to the 12th as well. I am now in body shake mode again - uncontrollable shaking.
I am scared, anxious, nervous. I am tired and I am really quite sore today.
Rob should be home soon and then we will make our counter top decision.

Friday and no plans

I thought I was tired last night and Rob and I went up after the news but then I just flipped in bed. At one point I asked Rob if he had locked the car and he was sleeping. I went downstairs and locked the car and turned on tv - took out the laptop and played on facebook. The thing about being in an altered state - my game scores really stink. Late night tv also stinks. So I went through the home page of facebook commenting and liking where I could.
I emailed a couple friends and family members who aren't on facebook and haven't heard the news. Finally at midnight I tried to sleep again (popped an ativan and hoped for instant relaxation). Somewhere around 1 was the last time I recall looking at the clock. Slept until Nick woke up at 7.
We got some awesome landscaping done earlier in the week and I honestly haven't walked around to look at it yet. I've seen the front as I come and go from the car but didn't see the back until this morning - very happy with it. I flowering faux fence that will hopefully grow quickly to shield us from some neighborly noise.
I finally put together my teacher appreciation project - its teacher appreciation week and I would normally have cooked for their luncheon and volunteered in the classroom during math and had something real nice prepared for Ellie's teacher but the week just kind got away from me. I will pick up some flowers and deliver her charming "19 reasons ms. sharkey is the best 2nd grade teacher ever" frame later today.
I guess I need to go grocery shopping too - my mom nicely made her lunch last night and had to resort to peanut butter and jelly on graham crackers. Just because I can't eat doesn't mean everyone else has that issue.
My body hurts today - feels like I have just run a marathon without any training.

not great but middle of the road

My first experience with enemas today - really don't understand how people use them as a weight loss aid. Mom drove me and Nick came with as a distraction. The bonus was since Mom was there I got some sedation. I was told it would be about a 10 minute procedure.
The nurse was the nicest person ever. He looked at my bruised arms and said he would really work to find an untapped vein. First try looked successful but then went flat. Second try a 1/4" over from the CT vein but successful. After the IV started my body shakes were back - even with the two heated blankets. I don't know if it was nerves or pure determination but even with the same twilight sedation as Tuesday I felt everything today and was awake and monitoring everything they were doing.
I don't know if it had something to do with my breakdown at the hospital last night or what but my pathology that was supposed to take a week was back today and I had instant results of some pathology today. I was wheeled into recovery where the nice nurse brought Nick and Mom in to keep my mind off things.
The findings:
rectal tumor was seen to invade fourth layer with irregular border - wall thickness 8.5mm.
approx. 10 lymph nodes were seen with appearance suggestive of malignant involvement.
three iliac nodes - preliminary cytology consistent with reactive benign nodes.
there is clear echoplane between uterus and the tumor.
given the above - the tumor is staged T3N2.
My GI doctor told me because of the size of the tumor I will probably go for 5-6 weeks of chemo to shrink the tumor before removing it.
I got dressed - Mom insisted on helping and we took a walk around the hospital. We came home and Rob took the afternoon off. After eating some soup I was actually able to sleep for a couple hours. Trying to maintain our routine my parents came over for our weekly Thursday night dinner and Rob's brother Dean joined us. Good laughs and stories - kept my mind free.
I told Ellie tonight - matter of fact she asked if I was sick and I said yes I am. Didn't go into how sick but it felt good to get it off my chest and not hide it.
On the menu tomorrow - I have to pick out a counter top color for the unfinished kitchen in Michigan. I hold the final decision and if we want a kitchen I can cook in Memorial day weekend then I need to make a choice. No doctors tomorrow, hopefully no medical decisions - maybe a call to my primary for some anti-anxiety drugs but other than that I just want a normal day.
Thank you for all the support via phone calls, facebook and emails - I really appreciate it - it does help when I am having a pity party.
I was given a referral to a GI oncologist who I will meet with next Tuesday.

Best night sleep ever

I feel so well rested - It only took about 45 minutes to fall asleep last night and other than a couple mid-night jolts - I slept real well. Ellie came in at 7:40 to tell me that I had over-slept. I have not slept like that in years. I feel much better knowing that this icky cancer isn't anywhere other than where it is currently presenting problems.
I am on a clear liquid diet again but to be honest that is all I have been on since 6 pm Sunday. Somehow after you get life altering news food is the last thing on your mind. Yogurt, that is my speed I can keep that down without it coming back up and egg drop soup. Ironically, everyone tells you that you will lose 5-10 lbs doing the prep for your colonoscopy - for me it was 1 measly pound - I have since taken off about 7.
On the menu today - an endoscopic ultrasound. By the conclusion of the test I should know what stage and the complexity of my mass. I think I will also try to get in to see my primary doctor (who I haven't been to in about 6 years). See, I am a pretty healthy person - other than the occasional sinus infection or ear infection - I have never been really sick. Also on the menu today is trying to get my consult with the surgeon moved up from the 17th because it was clear last night that I am anxiety ridden and the 17th is just too long to wait. Catch up later.

2nd day - getting better!

I woke up and got to drink the berry flavored barium I need for my CT scans today (chest, abdomen and pelvic) - tasted slightly better than chalk. I told a dear friend my bad news before heading to my Mom's for support.
In the afternoon I came home for the final reactive prep for the scans - which tastes pretty much how nail polish smells. Rob and I took the kids to Grandma's and then we were on our way to the hospital. I got called and while walking back to the CT area the tech began explaining the procedure and what would happen. When we got to the room my tears started again. I laid down on the table and was told they would start an IV to inject the radioactive dye (sounded like so much fun). My body was uncontrollably shaking but I was not cold. They run me through the machine a couple times for pre-dye images. Then the dye is pushed - I was told this usually gives a hot flash effect, nausea, dizziness - instead its like ice in my veins. I go through the machine about a dozen times. They pull the IV and stand me up. Will I be able to see results today? No- after reviewed by my doctor I should have final results tomorrow. We begin walking back to meet Rob and my arms from shoulder to fingertips and numb and tingly like they are asleep. I mentioned this and was told no it wasn't normal. I ended up seeing a nurse who tried to take my vitals. My fingers were so cold she couldn't get my pulse and my blood pressure through the sky. I guess I cried enough that the radiology doctor came in and said she would read my scans and get right back to us. By now I am shaking uncontrollably, having difficulty breathing, arms and legs are still asleep and I know nothing.
It had been mentioned that since I wasn't feeling better a trip next door to the ER was in my future. So off to the ER we went. By now I have begun hyperventilating. The very nice triage nurse let me look at my CT results and there is no other cancer present in any of my lymph nodes - hip hip hooray. But hey, I still can't stop shaking and tingling.
I am finally taken into a room and told yes indeed I am hyperventilating and need to stop. They started another IV and took some blood and gave me fluids. Then they gave me ativan and then another ativan and it made my legs and arms stop tingling and my body stop shaking. Woo Hoo I got discharged.
Tomorrow is endoscopic ultrasound where the GI doctor will be able to tell me what stage this cancer mass is.