It has been a while since I did an update on how I am doing and how my treatments are going. This is an "on" week, where I take Xeloda 3000mg a day for 7 days. I began the 7 days Sunday morning. I asked the Dr. for some better nausea medicine, that way I won't be as sick this week. I had Herceptin and Zometa on Dec. 23rd, so I was pretty tired on Christmas. I have had to increase my pain meds because of increasing pain in my left hip, and also right shoulder. The tissue on my right chest wall and the cancer in my shoulder area seems to be growing. I am having circulation problems in my right arm, and the Dr. think this is because of cancer blocking my lymph nodes on my right arm. My hand and arm are purple sometimes, and I have pins and needles and pain in my hand and arm.
I am always very fatigued, and will take long naps during the day. I feel like I am just missing life as I sleep the day away. I hate feeling tired, and wish I had more energy.
I also have been having localized pain in my head, as well as occasional vision problems. I am holding out hope that this is just from damage from my original brain tumor, and not a new one. I had a brain MRI Monday night at 9:30p.m. I will be anxious for the results, and hope that I get good news. So, that is what has been going on, and I will post once we get the results from the brain MRI.
I am finally blogging about our FABULOUS wonderful awesome trip to Disneyland. This trip was exactly what our family needed. It was so great to get away from our everyday life and just play and enjoy and have fun together. The memories we made are priceless, and the time we were able to spend together is invaluable. I loved being away from all the worries and stress, not having to worry about cooking or cleaning, and just get away from the drudgery of cancer and everything else that cancer entails. I took more than 500 pictures as I tried to capture each precious memory, that way when I am gone my family can look at these pictures and remember what a great time we had together.
I felt pretty good while we were in California. I had taken the week before off from chemo, and of course took the week off while we were on vacation. I am so frustrated that I feel sicker from the chemo than the cancer. I had a lot of pain still, but thank heavens for pain meds. I had to increase my dosage because of the abuse of being up and about more than I was used to. I either had a wheelchair or a scooter (talk about humbling to have to use those), so I was able to keep up with everyone else.
We loved Disneyland, all the rides, meeting characters, delicious food, and the magical place that it is. The weather was perfect! The kids loved having their own souvenir money and shopping for the perfect keepsakes. We had so much fun at a character breakfast, and getting autographs. I wish we could have stayed longer!
Thank you once again to Get away today, and all of the generous people who made this trip possible. You will never know how much this meant to us, and how grateful we are. The trip was perfect, and we will treasure the memories and the time we had to spend together as a family. Thank you!!!!
 Here I am at Disneyland in my motorized scooter. Not only was it great for getting me around, it had room enough to load a child on with me when their feet got tired.
 We loved the holiday themed Small World ride. It was lit up so beautiful!
 Toon town was so FUN! We all enjoyed playing around and posing for silly pictures.
 I was so thrilled to meet Aladdin and Jasmine.
 This picture was taken at Universal Studios. We met Shrek, Donkey, and Fiona. Ammon LOVED Curious George, and SpongeBob.
 Caleb and Ammon got matching Mickey Pirates of the Caribbean T-shirts, and the girls also got matching shirts, and fun Mickey Ears.
 Just some more fun photos.
As I sit here Christmas Eve, I am reflecting on all of the trials and blessings of this last year. Honestly, I did not believe I would live to see another Christmas. It has been a bittersweet Christmas season. I usually love everything about Christmas, I go crazy decorating the house, listen to Christmas carols, go Christmas shopping, enjoy seeing Christmas lights etc. I feel like Christmas has just skipped me by. Our house has only a Christmas Tree and a Nativity. Usually I wrap garlands on railings, and I have totes and totes of Christmas decorations. I didn't put any of it up at all. I haven't sent out my homemade Christmas cards with our family photo, like I do every year (even last year!) I didn't make Christmas treats for our friends and neighbors. No token gifts for friends and family members.
I guess it is not a bad thing to not get caught in all of the trappings of Christmas, but it comes down to I simply miss the way things used to be. I have had time to focus on what my life consists of now, and it kind of depresses me. Being sick and miserable from chemo seem to make the depression feel worse. I have been fighting the constant thought in my head that I am worthless. I can't cook, or clean, or decorate for Christmas, I can't shop, I don't go hardly anywhere ever, except the doctor. I feel lazy as I spend day after day in bed, barely doing anything besides basic care of myself and children. I feel guilty, even though I know that I am not lazy, just sick but it frustrates me because I can't be what I used to be.
That dreary part aside, I am grateful that I am still here for Christmas. I may not be able to cook and clean, but Dan reminds me that I can still give love and share of myself.
I am always so touched by the spirit of Christ, but especially at Christmas. We are reminded and feel of the love of Christ each and every day as so many of our family and friends follow His example in love, charity, and spirit of Christ. We feel that wonderful joyous feeling of giving that everyone feels at Christmas all the time. We are so blessed. I love my family so much. I am grateful for each and every one of them. My husband and children are the best gifts I could ever receive. I love my parents and siblings, and I am so blessed to have such a close caring relationship with them. We spent Christmas Eve with our family, and it was fun, even though I had chemo yesterday. I just enjoy every time we are able to get together and make more memories. I forgot my camera so if Emily or Heather or Dad is reading this, PLEASE send me so photos via email!!!!!
Merry Christmas to you all. Thank you for all you do for us. Dan and I were speaking about how the windows of heaven have been opened unto us, and we don't have room to receive all of the blessings we receive. It is overwhelming how blessed we are, even though and maybe because of our trials. Thank you thank you! May each and everyone of you feel the spirit of Christ and the love of family and friends! God bless you all!!!!!!
P.S. Our trip to California and Disneyland was magical and wonderful! (I fully plan on sharing all of the fun with pictures on of these days!) However since we returned home I had to begin my Xeloda chemo pills and I have pretty much been too sick and fatigued to get on the computer much. I just barely got my camera out of my unpacked suitcase for Christmas. So once things die down after tomorrow, I plan on getting some pictures and blogging done about the trip.
WARNING: THIS POST WAS WRITTEN BY DAN (AMBER'S HUSBAND) AND IS NOT GUARENTEED TO BE CLEVER, CAUSE SMILES, LAUGHS, OR TEARS, OR CHANGE YOUR OUTLOOK ON LIFE.
We returned from Disney Land on Saturday evening (12/13) and we had a wonderful time. This was truly a trip to remember and the sweet memories for us and the kids will linger in our minds for a lifetime. At Disney Parks 2008 was dubbed "The Year of a Million Dreams" and so it has been for our family. Our hearts are full of gratitude to all those that made this dream family vacation possible through your generous support of the "Run 4 Amber". It is only fitting that December 2008 be dubbed by our family as "The Month of a Million Thank yous".
Amber fully intended to immediately chronicle our dream vacation on the blog and post pictures. But the morning after we returned Amber immediately began her regimen of the oral chemotherapy Xeloda which will continue through Saturday night. Since Sunday each day has passed with her feeling too fatigued, tired, and nauseated to work on a post. Finally, she asked me to post something explaining the delay. She told me to put a disclaimer on the post so people would know it wasn't her. I assured her that it would not be hard for them to figure out after reading it. My sweetheart is so articulate and witty and talented that even I, who live with her and see what she goes through on a daily basis, check her blog a couple of times per day.
Amber asked that I express our love and gratitude to our wonderful friends and family who so tirelessly serve and help us. At the beginning of this journey I told some of you that really wanted to do something to help us that this illness would be more like a marathon than a sprint because Amber would be in treatment the rest of her life. At the time I assumed that even though you are all wonderful friends you would grow weary from helping. Quite the opposite has been the case. We are constantly in awe at the capacity our friends and family members have for serving and providing for our every need. In the last 19 months I cannot remember a single person who did not seem genuinely happy to be helping no matter how many meals they had brought in or times they had taken our little boys. Amber often comments when people ask what they can do that all of our needs are being met, even some needs we didn't know we had. Each of you angels among us has taught us a lesson in giving loving service. It should be said of you as it was said of the Savior, "He (or she)went about doing good...for God was with Him". God bless each of you for your love and kindness.
This post is coming to you LIVE from DISNEYLAND. Someone forgot to tell my 2 year old Ammon that this is supposed to be the happiest place on Earth. Besides Ammon's 2 year old temper tantrums and a little bit of impatience from Dan, (he has a hard time slowing down on vacations and I move at the pace of a snail) everything has been FABULOUS!! The weather has been cooler than I had hoped, but tomorrow is supposed to be sunny and warm.
Monday we went to DisneyLand first thing in the morning. It was simply magical to walk in those front gates and see the amazing Christmas tree and decorations. Then who should we run into but Goofy, one of our ultimate favorite characters. Of course we got pictures and autographs. (I will add pictures once we are back home) We enjoyed a delicious breakfast from the bakery on Main Street, and then off to the rides. I had a motorized scooter that I rolled along in, so I didn't get too tired. We enjoyed rides, and my favorite was the newly redone Small World ride. We even got to see the amazing firework show. I was in heaven!!!! The finished out the firework show with real snow. Beautiful!!!
Today we went to Universal Studios. It was a long drive there in L.A. traffic. Universal studios was very uncrowded, so we were able to get on all of the rides right away. The little kids, Ammon and Caleb, didn't enjoy today as much. Too much time in the car, and not enough kiddie rides. They did get to meet Shrek, Donkey and Fiona, and later Spongebob and the Simpson Family. On our way out we saw Curious George, who Ammon loves. He was so excited, he ran and gave him a hug. Totally precious! Then we found a stuffed George for Ammon to take home as a Souvenir.
I actually went on the Jurassic Park ride and the Mummy ride, but would you believe that the ride that caused me the most pain was the studio back lot tour? Riding in that tram up and down hills, and then experiencing and "earthquake" made my body quake with pain. I survived all those fun rides, and Dan "enjoyed" the fun ride home driving once again in L.A. rush hour traffic. It took 2 hours to drive 40 miles. Let me tell you, our hearts were pounding more than they were on any of the rides we've been on. Utter crazy-ness. So many times I said, someones going to crash into us! We survived, and we were all so glad to arrive back at the hotel.
Tomorrow is another Disney day. We are so excited for our Character breakfast at Goofy's Kitchen. Then tomorrow we are going to split up. My Mom and Dad are going to stay with me and Ammon and Caleb, and we are going to devote the day to them and rides and activities for their enjoyment. Dan is going to take the older kids on all of the crazy roller coaster type rides. That way everyone will be happy rather than complaining about rides that are not suited for their age. It is also supposed to be 75 degrees tomorrow. I hope it is, because it seems like I have been cold the whole vacation. I really would love a warm sunny day.
I typed this on my Dad's computer so I can't add photos, but I will when we get home. Thanks again to everyone who made this trip possible. It has been wonderful to get away from all the stresses and worries of daily life, and spend magical time together as a family making precious memories. Thank you for making my wishes a reality!!!!!!!!!!!!!!!!!
My kids (and I) are bouncing off the walls with excitement for DISNEYLAND!!! We are SO EXCITED!! We leave on Sunday. Bekah and Abby wanted to start packing when they got home from school today. I told them we will work on it tomorrow, and then off we go on Sunday morning. Thanks again to all who made this trip possible! I am bringing my laptop so I can post some pictures and share the fun and memories while we are there. I am so glad we get to leave all the worries and stresses of regular life behind and go to the "Happiest place on Earth".
I have been enjoying pretty good quality of life this past week. It was nice to have a week off from my Xeloda pills. I was able to enjoy all the yummy food at Thanksgiving, and I really enjoyed visiting and spending time with family.
I went with my Mom and sisters to see the movie Twilight on Saturday, and we also went to lunch and did a little bit of shopping. It felt wonderful to have a normal day out with the girls.
Monday was Caleb's birthday. He is now 6. The day of his birthday we went down to Temple Square to see the Christmas Lights. Because it was a warm night, it was really crowded. I also was in a lot of pain after only walking a little bit. We are going to look into getting me a wheelchair so when we have activities like this, I will be able to more fully enjoy them. I just get so tired so fast, along with the pain, I think it is time to have one.
 The lights were so beautiful, and it is always so wonderful to see the Salt Lake Temple where Dan & I were married. Dan dropped me and Caleb off at Temple Square, and then went to find a parking spot. Caleb & I had a tender moment discussing temples and how families can be together forever. I was so glad I had a chance to explain to him that if I die, that we will be able to be a forever family. Caleb is the one who expresses the most worry about me dying than all of my other kids. So, I really was grateful to maybe ease some of his fears and worries.
 This is my girls with a couple of their cousins. This year all of my siblings and their kids were able to go. We were quite a big crowd. Every year, before going to see the lights, we all go eat pizza at Litza's Pizza. My parents started this tradition while my dad was going to school at U of U. It is something I look forward to, and love the reminders of the true meaning of Christmas. The beautiful nativity's and temple grounds really puts you in a good holiday spirit. Plus on the drive home, we stopped at Krispy Kreams and got some hot fresh donuts. YUM!
 Mary and Joseph with the baby Jesus was absolutely stunning in the reflecting pool in front of the temple.
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