Great Minds Think Alike

We drove to Orlando this morning for Scott's Interferon. His CBC was 2.1 so Dr. Nick decided to hold the Interferon. I was thinking on my way downstairs, this is crazy. We drive to Orlando once a week and this is the 2 nd time this has happened, there has to be another way. Scott met me downstairs and said Mike who is an RN there thought us driving up, not knowing if Scott will be able to get his Interferon is crazy. So Mike was on his way down to talk to Donna (Dr. Nick's nurse) to see if we can have it set up on the coast. If it works out the way we are all planning, Scott will have his blood drawn on Tuesday here on the coast and if everything is in range then we will drive to Orlando on Thursday.

So Many Things

Friday and Saturday Scott spent the day in bed. He was sick from chemo and covered in hives. So I was treating both symptoms and unfortunately both the meds. I was giving him make him sleep, so at least he was able to get some rest.

Sunday Skylar came over at 7:00 am so I decided to take her to church. Scott got up shaved his head, laid back down for a few minutes, got up again shaved his face then laid back down. I tried to convince him to stay home but, he wanted to walk into church as a family. When we got to church people flock around us, one lady cried, someone we didn't even know approached us and said their group had been praying for us. When the prayer was said Scott's name was mentioned. It was so heart whelming to be surrounded by so much love. That was the first time we had taken Skylar to church and she loved it. So I am thinking she should start spending Saturday nights with us. After church we took Skylar to a movie and the to Ben and Jerry's for ice cream. I showed her how to hula hoop (yes in Ben & Jerry's) and she picked it up really fast. They took her picture to add to their wall so we will have to go back to check it out.

I booked our cruise for September when Blake and Kellie come. I am trying to look at this as a positive experience for Blake. Blake has already taken an adult stance on what to do with all the extra money he will make while being deployed. He wants all his loans paid off and money put back for a down payment on a house. Maybe this will be an adventure for him. Our church sends care packages to our military and I want to be involved with that.

Update

Wednesday Scott had called my cell phone while I was getting my hair done. He asked me how much longer I was going to be and if I wanted to go swimming? I said I was getting my hair done and I didn't want to get it wet. Why, was Scott asking me this? Because "Scuba Scott" who is not suppose to be out by the pool when nobody is home was outside taking pictures for Brice his physical therapist and fell in the pool. NOT FUNNY!! I told him he could make a decision 1. He could not stay out of the backyard when I am not home or 2. He could go to play B-I-N-G-O with the old people. Although we love to play bingo he choose #1.

Thursday we had to be in Orlando at 7:30 am for Scott's blood work. Yeah!!! All the white cell count was within range. Dr. Nick decided to go ahead with the Carboplatin and the Interferon. Poor Scott he is so sick this morning. I hung around a little bit before I went to work. I gave him Phenergan, ice tea and a bucket. I can't tell you how it breaks my heart to watch him go through chemo. Skylar wants so bad for me to pick her up at school so yesterday I made plans to pick her up since Aaron is coming up to see Scott. Maybe I'll take her for ice cream I don't want to take her back to the house because I don't want her to see Scott sick.

A "BIG" thanks to all of you who signed Scott's dedication page.

Does Any One Ever

make a list of all the things you need to get done in a weekend and finish it? Scott and I just had our garage redone so everything the garage held was in a POD. I unload the POD but, looked at my new storage space and realized I needed to go through and get rid of some stuff. I sent Blake's footlocker that helds things from his childhood and childhood Christmas ornaments. I also made 2 totes for Brandi. I then had enough storage area for my our things. I organized the whole garage.
I wanted to get yard work done but, didn't make it that far because on Sunday I was exhausted. I did manage to cut 2x4's and place them under our bed. I hate those metal supports that the manufactures use and they are impossible for wood floors.
I also wanted to get my house cleaned but, I will work on that during the week. I'll make a new list and see how I do.
Scott seems to be enjoying his time off from injections. We didn't even Wii this weekend so I guess I am not addicted.

If You Have Not Already, Please Do So

I just dedicated a page to Scott Zech at LIVESTRONG Action.

This page is a part of the world's largest dedication book that LIVESTRONG
Action will use to pressure world leaders to do more to fight cancer. Can
you add your name to my dedication page? It'll only take a second, and you
can help me reach my target of 25 dedications.

Please click here, it only takes a second:

http://www.livestrongaction.org/node/42825 [1]

Right now, Lance Armstrong is dedicating his ride in the Tour de France to
the fight against cancer. And after the race, he'll send this dedication
book - with your signature - to world leaders and pressure them to make
cancer a priority in their own countries. It's our best chance to push for
better treatment, more funding for cancer research and access to care for
everyone around the world.

But if people like us don't stand up, these leaders won't pay attention.

Will you check out my dedication page? Scott Zech inspired me to
take action - hopefully they'll inspire you to do the same:

http://www.livestrongaction.org/node/42825 [2]

Can You Hear Me Now?

Scott saw Dr. St. Mary this morning. Dr. St. Mary doesn't think that physical therapy is helping Scott. The problem is his brain is not signaling his leg/foot to work. Scott has to be patient and let the brain heal as it heals it will send signals. He has ordered Scott to have a new AFO fitted for his foot. This should help correct his walking. Scott will see East Coast on Monday. Browning's had told us last Saturday that they can also line the AFO with mole skin to make it more comfortable on the patient. Dr. St. Mary thinks the occupational therapy for Scott's hand is good. He also believes that the hives are coming from the frustration Scott is beginning to feel. Maybe know he will kick back relax alittle bit, let things heal as slow as they are going to heal and practice Wii so he will be alittle competition for me : )

Rest For Scott

Scott was unable to get chemo because his CBC and ABS had dropped. Last week they looked like they were reproducing but, the blood test today showed they had dropped. Dr. Nick thought it would be best to do nothing and let his body rest for a week. We will check his levels next week and go from there. I think Scott was relieved that his body is able to rest for a week. I wasn't sure at first but, Dr. Nick assured me it would be fine.

Michelle brought Scott over homemade Macaroni and Cheese and turtle and chocolate chip cookies @ 5:30 am (that's love) It was so cute she divided the mac & cheese in individual containers so all Scott would have to do is pop it in the microwave to warm it up. She may have made a mistake - I see allot of homemade mac&cheese in her future.

Scott has an appointment this morning with Dr. St. Mary to see about the left foot and possibly his left hand.

Publish Post

Doing Better

Scott had done pretty well this week. He has had a hard time dealing with the Hives. At night it seems to get worse. He has been taken the Children's chewable Benedryl because they are not as strong as the adults. I think we will start trying a chewable in the morning and one in the evening. He has physical therapy and occupational therapy today. The block they did last week to straighten his hand didn't work like Scott hoped it would.

Scott has chemo tomorrow (if his CBC count is up) and he will get another shot of the Interferon. Friday we have an appointment with Dr. St. Mary to see if there is something he could do to improve Scott's walking. That seems to be the thing that is starting to really affect his spirits. It breaks my heart to see Scott have to go through so much.

Wii Are Addicted

Who would have thought the Wii would be so much fun. Scott and I have different games bit, are enjoying the games that came with it. Scott loves the baseball and I love the tennis. Probably because those are the ones we are really good at. I've found two things It is good balance for Scott and is great exercise for me. Scott and I are so competitive against each other. If one or the other wins we hit play again. I played Wii from 3:30 to 7:00 last night. I have so much to do and have no time for Wii but, I find it hard to put it down. So tonight when I go home and am not even turning it on.

What A Weekend

Scott did pretty good Thursday and Friday. Aaron came up from Jupiter and he and Scott went to lunch. Scott had gotten a Wii for his birthday and hasn't played it yet so Aaron introduced Scott to the Wii. Scott and I even played a few games after Aaron left.

Saturday Scott woke up with hives. I gave him a children's chewable Benadryl because that usally takes care of it. We got went to Browning's to see if they had something better for his foot so it wasn't so painful for him to walk. They tried a couple different things but, didn't want to hender his ability to walk or his rehab. I had a few things to get at Sam's . Scott didn't really feel like going in. I offered to take him home and then run to Sam's but, he said no he would sit in the car. So I did a quick run in and out. It usually takes Scott a little longer to get out of my jeep - while he was getting out I was taken things out of my truck to the front door. By the time I am done Scott is at the door and I unlock it and let him in. We have been doing this for awhile- only this time Scott got out of the jeep and fell. I tried sitting him up he had no balance. This lady was jogging by with her kids and offered to help but I was afraid to pick him up right away for fear he would fall again. I told her no I had it, poor lady kept insisting to help. I finally told her I couldn't pick him up because he has no balance. We (Scott & I ) almost had him up but, nothing he fell again - not as far this time. He asked me to roll him on his belly and he then brought himself to his knees and stood up. He was still off balance so I walked him into the house and he fell asleep on the couch. I don't know if it was the Interferon or the Benedryl. I heard a noise and ran to the bedroom, I was so scared I thought Scott had fallen again. When I got to the bedroom he had dropped his glass of juice. He kept saying he was sorry but, I was so glad it was his juice and not him. Every noise I her, every dropping sound takes me back to April 24th when Scott collapsed on the bedroom floor. I keep thinking that memory will fade but, it becomes more vivid each incident Scott has. I checked him before I got into the bed and he still had a few hives and I told him he should take another Benedryl but, he said he was still feeling the effects from the one he took earlier and didn't want to take anymore.

Sunday Scott woke up and was covered in Hives. I gave him Benedryl - lots of Benedryl so he was pretty dopey all day. He slept most of the day with small bouts of me waking him up to give him something to eat. I stayed beside him most of the day and then I went outside to unload the POD. I started putting things away and then realized I need to go through everything. I didn't realize how much Christmas stuff I had. I am going to make a box for Brandi and one for Blake and hopefully get rid of most of it that way.

Monday I woke up this morning made Scott a Spinach and cheese omelet , put his morning meds beside the bed and realized he didn't take his night meds. woke him up at 4:00 am to see what he wanted to do about his nightly meds. I asked him about his Hives and he said they were gone. I asked him how he felt and he said he feels like he has a cold. UGH!! I told him to call off rehab today because he didn't need to be around people for his sake and theirs. I put his wheelchair beside the bed and made him promise me to use it today. I gave him his cell phone to call me if he needed me home. I am a nervous wreck being away from him. I will probably drive him nuts with phone calls today.

One Day At A Time

I feel like I am in the twelve step program and at a stall. Before heading to Orlando yesterday I went to Holmes Regional to pick up the CT scan and report from June 26. Scott was unable to get his Carboplatin yesterday but he did receive his injection of Interferon. His overall white blood cell count was 1200 and it needs to be at least 1500. We had a consultation with Dr. Nick where he said not to worry, we will push it back a week. Dr. Nick would rather hit him with a heavy dose of Carboplatin and let his cells recuperate then lower the dosage. Dr. Nick also said there were small flecks of hemorrhage in the brain but, not to worry about that either. HOW DO YOU NOT WORRY? A combination of all these things are what started the brain swelling in the beginning. Dr. Nick did give Scott samples of Nuvigil to help with his energy level. Scott's physical and occupational therapy is going slower than he would like.

Blake texted me asking if Scott and I wanted to go on a cruise in September when he and Kellie are home. Today I will be looking into cruises, he'll be home for a week. Blake dances around telling me he is deploying in October but, in my heart I know he is. It's odd how you just feel it. Scott and I are planning to go to New York to see him off the tarmac. I can't even try to imagine the next year and a half.

Fourth Of July Fun

Skylar, Scott and I headed to Orlando on Thursday for Scott's Interferon injection. Skylar asked what they were going to do so I explained Scott's injection. Skylar asked if sh had to watch them do that to Pappy, I said, "no baby" you don't. We walked back to the room with Scott and then Skylar and I found a quite room to wait. Scott kept texting me and telling me what was going on. After the injection we headed to Port Orleans French Quarter to check in. We unloaded, caught a bus to Disney, caught a monorail to the Grand Floridian and made it just in time for dinner with Cinderella, Prince Charming and Lady Tremaine oh yeah and the evil step sisters. Skylar didn't want Lady Tremaine and the evil step sisters to sign her book because they were mean to Cinderella. Cinderella told Skylar that her step mother and step sisters were trying very hard to be nice to her. Lady Tremaine told Skylar that if she was mean Cinderella, Cinderella would not have invited her, that this was a celebration. The evil step sisters never made it to the table before Skylar had had enough, she was ready to go back to the hotel.

Friday Skylar and I got up had breakfast and headed to Hollywood Studios. Skylar and I waited in line for 70 minutes for Toy Story Mania, what a fantastic ride. I was so surprised at how great Skylar was waiting in lines. She then wanted to go back to the hotel to swim. We headed back to the hotel. She barely got to swim and they asked everyone get out of the pool apparently a small child poohed in the pool. They had closed the pool for over an hour Skylar and I headed back to the room and she crashed.

Saturday we had plans to have breakfast with Alice in Wonderland, the Mad Hatter, Mary Poppins, Tigger and Pooh. Scott stayed behind. Skylar and I headed to the hotel restaurant to make sure Pappy was fed before we headed for breakfast. After breakfast we had plans to attend the Magic Kingdom. The look on Skylar's face and her giggles as she saw the characters was so very cute, the memories are priceless. The characters made their rounds from behind so I would tell Skylar who was coming up behind her. She would quickly take her napkin and wipe her mouth so she was presentable to the character. She wasn't sure about Tigger or Pooh but, warmed up quickly when Tigger kissed her and Pooh hugged her. As we were leaving , a lady chased Skylar down to give her pixie bracelets. Skylar is so grateful for everything someone gives her. After breakfast Skylar changed her mind she wanted to go back to the hotel to swim. I asked her if she was sure because the park was expected to reach maximum capacity for the fourth of July and if they closed we wouldn't be able to get in to see the fireworks. She still opted for the pool, she didn't care about the fireworks.
We went back to the hotel and changed into our swimsuits. I had 50 sunscreen, we grabbed towels and we were off to the pool. The hotel had a big Sea Serpent with King Triton riding on top. Skylar couldn't wait to slide down his tongue. It was so cute. She wanted me to play in the pool with her. We both had fun on the slide and in the pool. I kept seeing Skylar with different goggles on when I asked her whose goggles she was wearing ,it was like she was going around the pool asking different kids to wear their goggles. I then suggested we go to the gift shop to buy her goggles. I was watching Skylar on the slide, when I noticed she had taken charge on the slide and would tell the kids and adults when to slide and they were actually listening to her. I was watching with amazement when an adult looked at her to see if she should slide or not. I later asked Skylar what she was doing and she said she was the life guard. The pool wasn't really crowded I think because everyone was at the Magic Kingdom.The sun was hot, the browner Skylar got the redder I got. We swam for over 4 hours and then they closed the pool due to bad weather. We headed back to the room and ordered pizza. We had pizza and crashed. Needless to say no one seen fireworks and I don't think anyone cared.

Sunday was time to come home : ( back to the real world. Scott ended up getting some much needed rest. On the way home- Skylar wasn't ready to go home yet so she asked if she could come over to swim. She really didn't swim much because I couldn't swim with her , I was so burnt and Scott didn't want to get over heated.
I took two cameras with me . One I couldn't get the battery to charge and the other I just purchased, it came with one memory card that held 10 pictures. I didn't even think to try it out before hand orbuying a bigger memory card. When we were at the hotel I bought a throw away camera. When we got back to the coast I dropped the camera off at CVS. I wanted Skylar to see her pictures before she went home. I went back to CVS to pick up Skylar's pictures and she put them into her photo/signature book. She looked at the picture found the signature and put the picture with the signature. I then went to pick up Milo and deliver Skylar to her dad.

Ready For Vacation

After work I headed to purchase Skylar a full piece bathing suit. Who would have thought at 5 years old she would be so self conscious about her belly being seen. Scott thought it would be a good idea to purchase ponchos due to the predictions of the weather forecast. Just in case we get lucky and see a little sun I also bought sunscreen. I came home packed , showered Scott, then Skylar and then myself. Now we are all clean and ready for bed. I hope Skylar sleeps she is super excited for tomorrow. She loved all her new clothes, her bathing suit and her PJ's.
I am going to take Milo to daycare early so I can come home and pack the car and then we will be off to Orlando.

Pleading Insanity

I was cleaning and shredding paperwork yesterday when I came across Scott's MRI results from the hospital. Before I shredding the paper work I wanted to make sure it wasn't something we needed so I flipped through all the paperwork and began reading.

"BIG MISTAKE" HUGE MISTAKE - what the hell was I thinking. I told Scott that I had read it and his reaction was also what the hell were you thinking. He then told me he would never tell me what Dr. T (the neuro surgeon) told him. He said it was a closed door conversation. OH!! that made me feel better. I am an emotional wreck, I feel like I am walking in a fog. It's hard for me to work because I worry about Scott being alone. What if something happens and he can't get to a phone?? My mind is driving me crAzY. I said in the beginning I will not let chemo control our lives but, it's hard to not let this disease control my every thought. I feel like Demi Moore in the movie Ghost. I tell Scott all the time how much I love him, how important he is in my life but, I feel like I can't tell him or show him enough. Does he know how happy he makes me???

Neither of us know what tomorrow will bring but, each episode that Scott has scares me. I wonder if it is the tumor , chemo, the injection or changes in the brain from the surgery. I am scared each day to not tell him how important he is to me because what if there is no tomorrow. I had surprises that I had to spill because I am afraid to keep a surprise for the fact that I may not get that chance to "Surprise" him.

I am looking forward to getting away for a few days. Scott has his injection Thursday and Scott, Skylar and I are having dinner with Cinderella and the Princess's that evening. Scott favorite is Belle. I just hope he is feeling okay after the excitement the last injection caused.

Blake is suppose to go to Iraq in October , if his compassionate reassignment does not go through. I am really hoping it does because I honestly think I am at my breaking point.
I don't even what to utter the words "What Else" could possibly go wrong.