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.