Just a quick message to all of my blog readers. I would like to thank you for all of your kind words of love and support. We read each and every message that you post, and even though it is not possible to reply to every comment, please know that we gather strength and take great comfort from you. I know that all the prayers you offer in my behalf are heard, and you will never know how much they help me and my family.
Tonight as I am so worried for my Pet-CT scan, Dan was reading me your comments as I rest. I have felt so much peace and comfort. As you are prompted to share your thoughts and experiences, please know that your words are truly inspired, and are usually just what I need to help me. So as many of you say that I inspire you, I want you to know that all of you inspire me, you help my faith, and help me find the strength to carry on. To those of you who have also shared your personal experiences to help me, I thank you so much. You will never know the comfort that your words and messages bring to both me and Dan.
I know that Heavenly Father answers our prayers, as well as some of our secret worries and longings through other people, and I don't doubt for a moment that He works through all of you to share stories that answer questions or worries that I have. I thank you all from the bottom of my heart. Thank you for sharing our journey with us. We could never make it without you. Thank you, and God bless you all!!!!!
My heart has been very heavy these last few days. I received bad news with my last blood test. My tumor markers have risen again, and some other blood work came back indicating that there may be some organ (either heart, lung, or liver) damage. I will be having a Pet-CT scan on Thursday 1-22-09 to see what is going on. We also have Bekah's district spelling Bee that night (she took second place in the school spelling Bee, Yeah Bekah!!!!) Blake also has a church basketball game that night. I hope I don't feel too worn out or sick so I can support my great kids.
I am still struggling emotionally. I fear greatly that my time on the Earth is growing shorter and shorter. I have just been so tired lately, and my pain has increased. I plead with Heavenly Father several times daily that my life will be prolonged, that I will still be able to be here on Earth, to be a wife, mother, sister, daughter and friend a little longer. I still hope for a miracle, that maybe some chemo drug will knock the cancer into remission or even just shrink the tumors.
My faith wavers as these prayers have not been answered. I know I need to align my will with with that of my Heavenly Father, but it sure would be a lot easier if His will was exactly what I wanted. It is difficult to put faith in my Heavenly Father that everything will work out okay if I pass away from cancer. I worry about my dear husband and children. My heart breaks every time I think of leaving them. I can't hardly bear the thought. I try to take comfort that they are mine forever, but I want to be with them today, tomorrow and always. I want to grow old with the love of my life. I always wanted to have a 6th child. I never wanted to be done at 5 children. I miss teaching piano lessons, and serving others. I appreciate the service that is given me, but wish that I could be the one serving. Dan & I have always talked about that we wanted to serve a mission together once our children were grown. All these hopes and wishes and dreams are ones that are never going to come true. I can only hope and try to have faith that I will still have purpose, either in this life or the one beyond. I know the Lord can heal us from our illness and afflictions, as long as we are not appointed unto death. I am beginning to feel that I am indeed appointed unto death. This is a hard thing for me to come to terms with.
My heart is breaking even more tonight because Tyson's, my brother in law, father passed away from brain cancer this evening. A part of me is glad that his father is no longer suffering, and that he is in a better place with loved ones who have passed away before. However, a large part of me grieves for the family and friends left behind. I dread the day that I cause sorrow like this. We all need to remember that this life is but just a small moment, and that after our earthly mission is over, we will be together with our loved ones in joy forever. Easier said than done, believe me. But I am so grateful that I have this knowledge, otherwise there is no way I would be able to get through the days of sadness, grief, and physical suffering.
I apologize once again to my blog readers for another downer post. If I keep on being so down, you may all stop reading. I hope to have a good week with fun and happy things to post.
 Here are a couple of cute photos to make up for the downer posts. I thought everyone would get a laugh out of the pictures of my sister wearing my wig. One day she came over to help, and just for fun she tried on my different wigs. We laughed so hard, and I thought you all would get a kick out of seeing my sister Heather "Wiggin Out". She looks great, huh!!
 I took this picture Christmas morning. The world is so beautiful when it is covered with a pristine layer of white snow. I so enjoy the beauty of the seasons.
 Here are a couple more cute pictures from Disney Land. One day I will get a lot more photos put up on the photos page. My eyes get tired and my head hurts when I spend too much time on the computer.
 My cute 2 little boys, Caleb and Ammon, who always bring me such joy and can always make me smile!
First of all, i want to thank all of my blog readers for your love and support. I appreciate your words of encouragement and support, and for not looking down on me because I am weak sometimes. Thank you!!
I was archiving my blog this morning, and I came across a post from last January very similar to my last post. There just must be something about this time of year that triggers feelings of despair and sadness. I am still struggling emotionally right now, but I am trying to refocus and change my perspective. I need to remind myself that if you look for negative, you find it, but if you look for positive, you will find that too. I have been focusing too much on the bad things about cancer, and have forgotten all of the good things. For example, I hate that I can't cook and clean, but I am so grateful for the kindness of others cooking and cleaning for me. See, it is all in the perspective. I am going to try harder to focus on the good and not the bad, and hope that I can find strength and faith to deal with cancer and all of the hard things that go along with it.
I am off to the oncologist today. I didn't cancel my appointment . I will have herceptin and Zometa today. I should have been taking Xeloda this week, but I haven't been able to bring myself to take it. I am having a hard enough time dealing with life right now without adding all of the side effects and misery of one more thing.
We took the kids to Chuck E. Cheeses last night for a fun family home evening activity. They all had a really good time (even though it exhausted me). Another good thing is American Idol starts tonight!!!! Yippeee!!! See, I can still enjoy life even though I have cancer. I just need to remember to take the time to enjoy the little things, and quit feeling sorry for myself and focusing on all of the things I can't do.
Let me just start this post by saying I am sick of cancer. I am sick of chemo. And I am sick of being sick. Even though this last week was an off chemo week, I was still very tired all week, and wasn't able to do much. I am really struggling emotionally, I have feelings of depression, anger, and hopelessness. I wish that I didn't have cancer, and that I could just have a normal life. All I have ever wanted to do is be a wife and mother, serve in church and serve others, share my talents etc. Now all I do is lay around sick all the time. I struggle with feeling bitter about what my life is now. Then I feel guilty for feeling that way. Having cancer is a never ending roller coaster. Sometimes I feel up, and hopeful, but then there are the low valleys that are dark and full of despair. Part of me really wants to just quit chemo and be done with it. I hate taking the chemo, and being sick, and I don't even know if it is working. I wish I could see some improvement, but all of my cancer areas are the same. I don't know if the chemo is buying me more time, or if it is just destroying the quality of the time I have left. It is so frustrating and agonizing.
The highlight of my week was on Thursday when Dan & I were able to go out to dinner with another couple who are battling IBC. Janeal was diagnosed with IBC 6 months ago, and goes to the same oncologist as me. We spent 4 and half hours with them, laughing, crying, and sharing our experiences. What a blessing it was to spend time with people who know EXACTLY what we are going through. They have so many of the same thoughts, fears, worries, struggles etc. I am so grateful for the miracle that brought us together. I hope this is okay with Janeal, but I thought I would share her website: www.jsfight.blogspot.com She is amazing, and a lot stronger than I am. She is also battling Thyroid cancer at the same time. She is younger like me, and has 3 small children. Her and her husband Bruce are just amazing.
Anyway, I am sorry to be so down, but I need to be honest. This blog is my journal of my battle with cancer, and it needs to be real and honest. So after I am gone, my family can have an accurate knowledge of me and my battle with cancer. I'm not always strong and faithful, I have doubts and anger, and I need to be honest in sharing that. Thank you for bearing with me, reading my ramblings, and hopefully you all won't think less of me after reading this.
We got good news on my brain MRI last week. My brain tumor has continued to shrink, which is good, and their are no new visible tumors, which is really good. I was so afraid that I would have new brain tumors, and am so thrilled that I didn't. I finished another week of Xeloda. The new nausea meds, Kytril, made last week a lot more managable. Of course it always has it's price.... A 30 day supply costs $2000. Yes that is $2000. Because it is a new year, (HAPPY NEW YEAR!) our deductibles are all reset, so when it is time to refill it, it will cost us 50%, or $1000. It is nearly impossible to put a price on preventing nausea. I plan only taking the minimum amount of pills, and I think I can stretch my 1 month supply to at least 2 months. Once we meet our $5000 out of pocket for the year, the insurance kicks in at 100%. How incredibly relieved and grateful we are not to have to worry about where the money will come from to pay the mounting doctor bills, thanks to the wonderful generosity and success of the Run 4 Amber Fundraiser. We were able to pay off all of our outstanding doctor bills for 2008, and start fresh for 2009. In just a few short months those bills will mounting, and we already have money from the fundraiser to pay these. You can not understand the stress relief this gives our family!
Don't get me wrong, I am grateful that I have survived this aggressive disease for almost 20 months, but the surviving is pricey. I half wonder if I am worth it..... Fighting cancer is hard. I always feel like such a burden on my friends and family, and especially my husband and children. Even though I know there is a purpose for suffering, I long to reach the point where the suffering ends. The optimum end would be a miraculous cure, but the alternative end would be death.... I just try to find at least one small thing each day to help me find the will to continue to fight. Whether it is spending time with family, a phone call of visit from a friend, a husband who tries to meet my every need, and NEVER complain, hugs and kisses from my kids, smiling, laughing, praying, looking out the window and watching beautiful snow, listening to music, playing the piano. Each of these small things can give me the burst of hope that I CAN endure, that it IS worth it, and that I am BLESSED because of my fight against cancer. So even when the day comes that cancer wins the battle that takes my life, it can not take all of the life that I have LIVED. So when my obituary is written, it better not say "She lost her battle against cancer." Because I win my battle with cancer each and every day. A day without laughter is a day wasted
Charlie Chaplin
We are so privileged to see so many miraculous things happen because of cancer. We have experienced many miracles, and another one happened at Christmas. Our living room was filled with gifts from "Secret Santas". My kids were so thrilled Christmas morning to see the piles of gifts so generously given to them. It was a Christmas Miracle. What a blessing for the kids to be given so much! They have had so much fun playing with all of their fun toys. It was so fun for Dan and I as parents to watch with anticipation as each gift was opened, because we were as surprised with each package as were the children. The joy, delight, and excitement at our house Christmas morning was beautiful. I feel so blessed to be able to be here, and experience Christmas one more time. A sincere and humble thank you to the generous, loving people who once again so selflessly gave to our family.
Because of my health, I can not go shopping. I don't even have the energy to do internet shopping. I also would not be able to wrap Christmas gifts. Having bags of already wrapped gifts delivered to our home for our children (and even gifts for Dan & I) relieved a burden that greatly saddened me. I know there are so many more out there who have much greater needs than we do, and I don't know why we receive so much. I only hope that my children are learning from all of you who serve and give so much, and that they will be able to grow up to be like you, kind and giving. Thank you for following the example of Christ, whose birth and life we celebrate at Christmas.  Here is an after picture, Christmas Morning. The kids have had a blast playing with all of their fun new toys!
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.
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