First of all, I want to thank all of you for your love and support regarding my current path on my cancer journey. This is at times a very difficult road, and I thank you for all of your sweet comments. Your words of love and encouragement bring me so much joy. I know that I am not alone, and your caring comments and prayers offered in my behalf bring me strength that I can not even explain!!!
I had an interesting time contemplating "Independence" day. I am no longer and independent person. I depend on daily help with my children, my home, my yard, my meals, driving, my medical care etc. It makes me feel kind of sad. I long for the days when my life was my own. I was able to take care of my kids, volunteer at schools, serve in my church, go grocery shopping, do laundry, cook, clean, taxi, nurse, referee, and play with my children. Now I depend on someone else to do all of those things. I wish it wasn't so. I am grateful for all the many people who take on all of these roles for me. But the truth is, I wish I could still do what I used to. I miss my old life.
So here I am, feeling bad because of my lack of ability, and then I receive an award from my city for the 4th of July because of my contribution to the community. I feel like all those who serve me and my family should receive awards, not ME. I was so humbled, and touched. I was told that I received the award because of the example and effect I have had on others. I got to ride in a hot Mustang Convertible in the 4th of July Parade. My face hurt from smiling so big as the crowds of people who give to me, cheered for me. A tear or two escaped from my eye as I reflected once again on how blessed I am. Trust me, if it wasn't for all the love and service we receive, I would not be able to deal with my trial as well as I have!
I have an amazing wife. She is soooo easy to love that we never lack help or offers to help. An amazing example of this is our church congregation (ward). Each month Sister Eddington calls me and asks me what we will need in the coming month (meals, help with the boys, rides to the doctor, etc). She makes a calendar and passes it around to the ladies at church and they sign up to fill the needs. Everyone that touches the calendar signs up for something and sometimes multiple things. The calendar only makes it through about 1/3 of the room or less and all of the opportunities have been signed up for.
So after church I get about half a dozen ladies that tell me they would love to bring a meal or help with something but the list didn’t make it to them. They tell me to call them when I think of something. I love Amber so much that I love to serve her but I have never had so much competition in the loving and serving department. What a wonderful “problem” to have.
This past month, while Amber has been off chemo, our angel mothers, and my sister Kellie, who is an angel in training, have been coming up every day while I am at work to help with our kids. They are there to help Amber be able to do things if she feels up to it or allow her to sleep if she is too tired to do things. They have played with kids, cooked, cleaned, done laundry, and in general just made Amber’s life more enjoyable. It is interesting to see how much the kids love all three of them and look forward to the different styles and personalities they each offer. Our family is so blessed to have them in our home often. We love and appreciate all three of them dearly!
Hello Everyone! It’s Dan again.
Every time I post anything on this blog I feel like I am on hallowed ground. I kind of feel an initial exhilaration about writing something on a site that so many people love, about someone so many people love. I quickly come back down to earth and feel like a guy with sausage fingers trying to play chopsticks in a great concert hall on an amazing grand piano.
Amber is doing pretty well. She has good days and bad days. Her good days are when the pain is controlled and she has energy to do things that she wants to do. I want to be clear. The definition of controlled pain and energy to do things is not the same for most of us as it is for Amber. Being more specific the new medications she is on put the pain well below the debilitating level and below the level where its all you can think about. She does still feel pain depending on what she is doing its just that it does not keep her from doing many things. Amber has been in pain at varying degrees for so long having it down at this level probably seems very liberating. Also having more energy to Amber is different from how you and I would think. Having more energy means she can more effectively do 3-6 hours of activity that she deems most important to her that day. If she does this for a couple of days she usually is completely worn out and sleeps most of the next day.
Example: On Friday our Amber’s brother’s wife Kara came up to make lunch, visit, and finish a craft project with Amber. Amber and I went on an over night get away later that afternoon (nice dinner and overnight at a nice bed and breakfast). We came back Saturday around 1:00PM. Amber rested for awhile and then we took the kids to the new Night at the Museum movie at the local theater. She slept for another couple of hours and was completely out of it. I did take her to a dinner they were having at the church that evening but I should have just let her sleep. Sunday morning she could not even get out of bed without getting dizzy and sick. She almost always goes to church for sacrament meeting but could not do it yesterday. She slept until about 3:00PM and came down to her recliner to be around the kids for awhile. Even this morning (Monday) she still does not feel well enough to be up and around for more activity.
The good is that she can do the things she did Friday and Saturday. I guess it’s also good that her bad days do not usually include being deathly ill. She is just too tired to stay awake.
What tremendous blessings we have experienced! I am so grateful for the Lord’s mercy in allowing her to still be able to do the things she can do even after having aggressive, late-stage, cancer for well over two years. I find it interesting that when some facet of this trial changes we wonder, “Oh no what are we going to do”? Or “how are we going to handle this”? But the answer always ends up being the same. It just takes a few days or weeks of hand wringing for us to realize it. Faith in Jesus Christ and his atonement, his mercy, his love, and his power to heal us is always the answer. Sometimes he heals our bodies as a result of our faith filled pleas, other times it is not His will. I know that healing our hearts and souls is always His will. He stands ready and waiting for us to ask in faith.
We have been so blessed that many people have been inspired by the love of God to act on our behalf. They have truly “strengthened the weakened knees and lifted the hands that hang down”. Our families, ward and community have been so kind and have made great burdens lighter. We thank you and love you with all of our hearts. Who knew Chopsticks was such a long song J
I began my chemo pills again last night after having several weeks off. It has been 4 weeks since I have had IV chemo either. It has felt so wonderful to be able to eat and enjoy food, enjoy family events, go on vacation, and have a little more energy while I have had my little chemo break.
Having metastatic cancer causes so many problems by itself; pain, fatigue, stomach issues etc. When you add chemo, you just add a bunch of other problems. During my chemo break I was able to do so many great family things like my sister in law's wedding, going out to dinner as a family, going to the Draper temple open house, and of course our vacation to St. Maartin.
As much as I have enjoyed my weeks off from chemo, it is time to start the fight again. There was a part of me that really didn't want to start chemo again. The chemos that I am on only has a 20% chance of slowing the cancer. I realize that if I don't take chemo, I have a 0% chance. As difficult as it is to suffer the side effects, I feel like I have to TRY to do my part in fighting this disease. I need to know that I did my part to be here for as long as possible for my family.
I am being a glutton for punishment this week. Not only am I doing my oral chemo pills, I am going in for IV chemo today. I figure if I am going to be sick, I may as well double up and be really sick all at once. Plus I had to have an infected ingrown toenail removed yesterday. Due to chemo my nails grow all wonky, just another lovely side effect of my cancer treatments.
Needless to say, I am going to be flat in bed the rest of the week. My sister in law brought me some movies including the Anne of Green Gables movie series. So, I am going to have some great entertainment! I am always so grateful for all of the thoughtfulness of friends and family. My family and I am taken such good care of. I am always so grateful for the meals brought in, and thankful for the friends who take my little boys every afternoon so I can nap. If we weren't taken such good care of, I know I wouldn't have the energy to fight!
Last week was a busy week. We made Valentine's and Valentine Boxes and it was Ammon's 3rd birthday.
 I can't believe my sweet baby is 3 years old. I am grateful for the 3 years I have had him, and as much as I wish for many more years with him, I am just grateful for the years I have had with him. He brings Dan and I so much joy! He "nuggles" with me every night to go to sleep. He even has his own pillow on our bed. He holds my hand as he drifts off to sleep. We whisper "I love you" and he whispers "I love you" back. He is such a monkey during the day, but I treasure these precious moments when he is still my sweet little baby. He loved his cake, and pushed a chair over to the counter, and helped himself to the frosting before we sang happy birthday. Maybe it is his sweet tooth that makes him such a sweetheart!!
 It has been a tradition to make our own valentine's every year. Even though I seriously lacked the energy to do it this year, we still made them. We also made the boxes for the school Valentine's party. I really hope the kids will treasure the memories.
 As we celebrated Valentine's Day on Saturday, I was so grateful to have so many people to love, and to also be loved by so many. It is so nice to have a day to express our love to one another. Dan gave me 3 dozen beautiful roses. Red Roses to signify the love when we were first married, pink roses to signify how much his love has grown for me during my battle with cancer, and white roses to signify the eternal nature of our love and relationship.
 I made Dan a photo collage of us and our family. It turned out really nice, and he seemed really touched by the effort. I really enjoyed going through photos and picking out ones that signified the wonderful times we have had together as a couple and as a family. I decorated the photo mat with the words "FOREVER FAMILY".
I gave each of the kids a Webkinz stuffed animal, and my dad delivered a box of Chocolate Whoppers for me and the kids. (He has had that tradition since I was a little kid) My little brother Kristofor also sent me some beautiful roses with the sweetest letter.
I am so grateful for all those that I love, and grateful for those who love me too. I am grateful for the eternal nature of families, and take so much peace and comfort from the knowledge that the love we share as families is eternal, and that we will be together forever. I don't think I could stand the thought of dying young if I didn't know that my family is forever.
 I got myself a new set of wheels last Friday Jan. 30th. A couple of months ago my doctor wrote me a prescription for a wheelchair. I never go to the mall, or Walmart or anywhere because it is too painful to walk very far, and it tires me out too much. My girls have been wanting to get their ears pierced at the mall, so I finally broke down and had Dan go pick up a wheelchair for me.
It was wonderful to be able to go to the mall, and we also went to Costco. This was my very first visit to Costco. It is a different world appearing "handicapped". Some people are so wonderfully sweet, thoughtful, and accommodating. Then there are the people who are impatient and treat you like you are ruining their life by being in their way. I don't think we will take all of the kids with us to Costco again. It was too hard to manage all of the kids, plus a cart, plus a wheelchair.
 This isn't a very good picture of me in the wheelchair. I was still got tired out, and I think it shows. The current chemo I am on doesn't cause complete hair loss, so I have some nice hair growing in! Yeah!!! As you can see in the picture, my hair is really short, but at least it covers my scalp now. And my head isn't nearly as cold! The kids all took turns pushing me in the wheelchair. The boys even had a turn sitting in it.. Aren't they adorable!
The mall was great, and Bekah and Abby were so happy to have their mom go shopping with them. They are so cute with their new pierced ears! Even Caleb was thrilled to get a pretzel and Dan bought him a Jazz hat and T-shirt.
Okay, now time for not so fun stuff.
An update on my doctors appointment on Tuesday.
We found out exactly nothing. They are unsure of what is going on with my lung. The P.A. suggested that maybe it was scar tissue from pneumonia. WHAT??? I haven't had pneumonia in the last 20 years let alone the last couple of months. The densities in my lung did show uptake on the scan, which means that they are actively growing. I asked if maybe we should biopsy, and the PA said it was too risky, and it didn't matter whether it was cancer or not, and it wouldn't change the treatment. It may not matter to them, but it matters to me!! I want to know what the cancer is doing to my body. If there is new growth, I would rather change chemos right away, before it is too late and the cancer grows too much.
The plan is to do more blood work in a couple of weeks, to give us a better idea if the cancer is still growing despite treatment.
We are all really frustrated at the lack of answers and the indifference shown. My last blood work results weren't even in my chart, so when I asked about the results they didn't even know what was going on. The P.A. wrote my pain medicine prescription for the wrong medicine too. I really like my oncologist, but don't like it when I don't get to see him, and just see the P.A. Their office is too busy, and too many times results are lost, and they don't remember when I am due for tests, scans etc. I have to keep track of when I am due for them and ask to be scheduled, otherwise nothing would get done. They would just keep pumping me full of $4,000 a pop chemo and making big bucks, while offering inadequate caretaking of the patient . Can you tell I am a little fed up?
It is hard enough having cancer, and it makes it more difficult when you have to be your own advocate. I feel like they are so indifferent, when this is life and death to me! How can it not matter what the scans say???? I feel like they just assume I am a gonner and it doesn't matter what we do, my death is inevitable. So who cares about progression, or new tumors... Just keep me on the most expensive chemo's for as long as possible so they can keep raking in the cash. I know that isn't probably isn't so, but I feel like that sometimes. I just wish the chemo would shrink tumors, and the cancer would just go away....
 I am just so grateful for all of you who care so much about me. My dear friends and family are always so inspired, and know when I need a little extra TLC. I have received so many nice visits, thoughtful cards, and beautiful flowers this last week while I have been struggling. I am so grateful for all of the tender mercies shown to me and my family. Please know that you are heaven sent! Thank you for taking such good care of me! I know I say this all the time, but, I could not endure this without all of the love and support we receive.
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!!!!!
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!
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.
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