Amber Chase's Musings on Cancer and Life

Summer is 2/3 over, and I can hardly believe it!  We have been living each day to the fullest.  We have enjoyed a trip to Wolf Creek and a week at Bear Lake.  Dan and I have enjoyed 2 Friday night stays at Anniversary Inn in Logan.  We have been in a parade, watched fireworks, went swimming, had picnics and backyard bar-b-ques.  Dan and I went on a 4 day cruise to Cabo San Lucas, Mexico.  It was very relaxing and I was surprised how much I was able to eat!  As Dan said in his recent post, I am sleeping a lot, and most days I don't get out of bed until 2pm.   I plan on the rest of summer to be just as fun, although a little slower pace.   Every day I live is a gift.  Every moment is precious.   

Dan and I at Anniversary Inn

Bear Lake July 2009

Hey everyone its Dan again. 
     I can't believe how fast time flies.  I feel like its only been a few days since a post was put on the site and its been ten.  Life is very busy even when you try to keep things simple.  Amber and I have marveled throughout the last two years at how adaptable the Lord helps our family to be.  It seems like we go along as a family and something new and seemingly impossible to deal with happens and we kind of freak out and "normal" goes out the window.  We wonder how we can ever handle the new development or course the cancer has presented. 
    After a few days of wondering, and at least some unfocused freaking out, doubt is kicked out and our faith is re-focused.   We try to exercise our faith in thought and action by trying to do what we know the Lord wants us to do.  Before we know it we are blessed with the Lord's peace and the burdens that have been placed upon us somehow feel lighter that they were before, though they are seldom removed.  That is when we develop a new normal. 
     This process, which we consider a great miracle, has happened countless times over the last two years.  It does not happen because we are special or any different than anyone else.  It happens when we exercise our faith in Jesus Christ.  Through the power of the atonement and his grace which is sufficient for each of us he succors us in our infirmities.  He heals our hearts and our wounds and blesses us with his peace that passeth understanding.  Faith in the Lord Jesus Christ and his power to effectuate this miracle in each of us IS THE ANSWER to all of life's trials and suffering.  It is the way we do hard things while remaining faithful to the end.  I am so grateful that the Lord in his infinite mercy has taught me this so that I do not fear the future or hard things that may come in life.  I am also grateful my children are learning and experiencing this for themselves so that they know for themselves where to turn for peace and help.    
      We were blessed to spend time together in beautiful Ogden Valley at Wolf Creek Resort from 6/11-6/16.  We love to go there because it is so close to home, its beautiful. peaceful, and has a great pool and slide that the kids enjoy.  It did rain a lot while we were there so we had to time our swimming sessions just right and spend a lot of time inside playing games together and watching movies.  It turned out well because this level of activity fit Amber's ability better anyway.  She loved to go to the pool and float weightlessly in the water because of the immense pain relief she experiences while floating.  Caleb and Abby really enjoyed the small water slide into the pool.  Abby went on it 30 times in a row one day and 40 times in a row another day.  Amber made her stop at 40 because she was afraid she would drown from being too tired.  Caleb got to 28 times in a row and was very proud of himself.  He was so cute, he would hurry up the slide stairs and at the top on the platform he would look down where I was waiting to catch him at the bottom, flex his little muscles and yell at the top of his lungs how many times he had gone down the slide.  At that point he plunged into the tube yelling "man overboard"!  I kid you not, he did this every time.  I think Bekah decided she was too old for such things because she only went down a couple of times and then went to play with Ammon.  She never has really loved that slide anyway and since it takes about three people to keep Ammon out of water danger it was nice to have her playing with him.  Ammon is such a bundle of energy that every five seconds he has to be moved back to a safe water depth.  Blake is officially too old for the slide so he kept busy using a water noodle like a water cannon on the girls and sometimes on his mom.  If that failed he resorted to whatever splashing on them he could do with his hands.  I know everyone who knows Blake is surprised that he would enjoy such things.  surprised that he would enjoy such things.  We really enjoyed the time together and were blessed to be able to do it.
    

Amber has wanted to see our cute little Caleb play tee-ball because she thought he would be so adorable playing.  He had his first game on Thursday and she was right.  I have not had much time with all that is going on to work with him on playing ball like I did with Blake when he was little, so I was worried how he would do.  He did just fine and was so darned cute we could hardly stand it.  One time he hit the ball off the tee and it only went about four feet in front of the tee.  A bunch of parents and coaches started yelling "get the ball, get the ball"!  So Caleb dropped the bat and dove out of the batter's box and retrieved the ball.  He was so proud that he got the ball but it turns out that the coaches and parents yelling "get the ball" were from the other team yelling to their kids.  That's OK though at least he listened and showed some hustle diving for the ball.  We can work on the nuances of the game later.  
       Blake has been training with the high school cross country team every morning at 6:30AM the last couple of weeks.  We are very proud of him for sticking with it through the cramps and puking.  I think with some training and experience this is something he could really enjoy.  Blake, Bekah and Abby are all doing Jr. League golf at Eagle Mountain Golf Course on Mondays.  They play nine holes, have a lot of fun and give mom a three hour break Monday afternoon.  Its the best $50 each I have ever spent.  I guess that about concludes this Chase family highlight.  Sorry it  has been about as long as Sports Center on ESPN (1 hour). 

    I know it has been a really long time since I have last blogged.  I have just been unmotivated to get on the computer.  I spend my limited energy with my family, and whenever I have a chance to sit for a minute, I fall asleep.  I have been really unmotivated and have felt uninspired.  I just don't have a lot to say right now. 
    Life has been really good the last couple of weeks.  We had a wonderful time in San Diego.  It was such a beautiful city, and we made so many great memories.  I wanted to capture each memory so we can remember it all, so I took over 500 pictures. 
   My last test results were bad again.  The chemo isn't working, and it kind of feels like I am out of options, and just tired of the fight.  It has been a month since my last chemo treatment, and I have been feeling so much better with all of the toxic chemo  elements in my body.  I have a new home health care team, and they have redone all of my pain medications, and added new prescriptions to help with the different cancer symptoms I have.  It has made a huge difference in the quality of life I am experiencing.  Most days are really good days, and I am able to do a lot of things with my kids.  I do have days where I crash, and spend the entire day sleeping, however those are only after I have overdone it on good days. 
   So, that is what has been going on lately with me.  We are just enjoying spending time with family and friends, and enjoying every minute!  And one of these days when I am feeling more motivated, I will share more info about our recent trip to San Diego and put some pictures up on the site.  To all of those of you who read this, Thank you always for all of your love and concern, prayers and support!!!!

No news is not really good news.  I received bad news with my tumor marker tests.  My tumor markers went up about 20% to 104.  That was even with taking an extra 500 mg of Xeloda a day.  Obviously Xeloda is not working to kill the cancer.  I am stopping chemo for a while.  I see no sense in making myself sick when the cancer continues to grow anyway.  I am looking forward to having some quality time. 
   I know I tend to gloss over how miserable I really am on the blog because I hate to complain.  I have had so much pain from the cancer, that I haven't been sleeping well, and my dosage of pain meds is continually increased.  I also have tumor growing in my armpit that is growing on a nerve which makes my hand numb and tingling and pins and needle like pain.  It is hard to type. I have no strength in my hand, it is almost useless.  I can't play the piano very well, scrapbook, tie shoes, button things, etc.  It is so depressing at times. 
    As if life wasn't hard enough, Saturday night Dan started having intense pain in his abdomen.  Sure enough, appendicitis.  So we spent Sunday at the ER, and Sunday evening they took him in to have his appendix removed.  Surgery went well, but he is in pain from surgery.  He is hanging out with me in our family room.  What a pair we make! 
   Dan booked a trip for us last week to go to San Diego to celebrate 2 years of surviving cancer.  We are supposed to fly out on Sunday.  Hopefully he is recovered enough that we can go and enjoy!  I have always wanted to go to Sea World and the San Diego zoo.  He says he will be just fine.  I am on new pain medicine so I can hopefully be able to go and do while we are there. 
   Life hasn't been all bad.  We've celebrated Abby's 9th birthday and Bekah's 11th birthday.  We went and saw the flowers at Temple Square in Salt Lake.  2 weeks ago, Dan and I went to the Tulip Festival at Thanksgiving point.  That was truly amazing!  We stayed the night down there, and I am so glad we had that time together, just him and I. We've spent a bunch of time enjoying life and family, and making memories.
   This last weekend we went to Park City with Dan's family.  That was fun.  We go every spring, and the kids have a lot of fun playing with their cousins, swimming, and going shopping at the outlet mall.  I had to take a lot of naps and take a lot of pain medicine, but we still had a fun time (even though Dan was in pain from his appendicitis.) 

Me and Dan at the Tulip Festival.

Me and the kids at Temple Square.

    When I was first diagnosed with cancer, I spent hours searching the internet, trying to figure out how long I would survive this deadly disease.  Based on my research, with my stage of cancer and with the treatment I was doing, the median survival time was 15-22 months after diagnosis.  I just past 22 months yesterday.  I am so grateful and humbled that I am still alive.  It is a miracle that my life has been preserved.  Based on studies and statistics, I should be dead.  But I am still here, and in remarkably good condition, for a stage 4 cancer patient.
    These 22 months have been filled with the most exhilarating  ups and the darkest lows.  I have had times where I have been happier than I had ever been, and experienced the most touching miracles, big and small.  I also have had dark days and nights, where I didn’t think I could survive another day, where I felt great despair about my condition, and times where I feared greatly. 
  Through it all, I have been blessed with so much love and service to help me when I didn’t think I could go on.  I know my survival is a miracle, and I don’t think I could have made it without all of the service rendered to us.  If I didn’t have the opportunity to rest, thanks to those who help watch my children, I think it would be a lot harder for my body to withstand cancer and its treatments.  We have been blessed with hundreds of delicious meals, which are so wonderful because I don’t have the energy to cook.  Not only has our family been fed, but our spirits have also been strengthened by the support. 
    My cancer journey has definitely been a marathon.  I am so grateful for all those who have ran with us, step by step, through the difficult terrain.  I know that all the prayers that have been offered up have helped me and my family continue on, even when we feel like we don’t have the strength to continue.  I am so grateful for all the people who have helped carry our load, so we can run the race without extra weight hampering our fight.
   I am hopeful that I will live many months past my expiration date.  I hope I don’t start to mold or start to stink now that I am past my expiration date.   I plan to live every day as fully as possible, and I still feel now more than ever that every day is a gift.  I have lived every day more fully, enjoyed every little moment, and been grateful for every day that I am still alive.  I encourage all of you who read this to do the same. 

                                              This is our most recent family picture.  It was taken last night at Dan's little sister Kristina's wedding reception. 

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. 

The picture above is part of the decor in my scrapbook room. After listening to my church's General Relief Society Conference in September, I will always remember President Uchtdorf's talk on creation.  (Here is a link to his talk:  It is one of my favorites!  Happiness, Your Heritage )
In my scrapbook room I have this word "CREATE" on my wall.  When I see it, I always reflect on all the things that I create....  Memories, scrapbook pages, smiles, laughs, music and many more things.  As a wife and mother, I have opportunities every day to create something special.  Every day is truly a gift, and I hope each day that I create lasting memories with my family that will get them through the tough times, should I pass away from cancer at a young age.
    At times I feel so discouraged because I feel like I don't contribute very much anymore.  Our family has been asked to speak in church in a few weeks, and as I was preparing for this talk, I reread President Uchtdorf's talk.  It helped me feel so much better.  Some of you may end up hearing me talk about this in church, but here is a quote that I found deeply comforting:
"But to what end were we created? We were created with the express purpose and potential of experiencing a fullness of joy.  Our birthright—and the purpose of our great voyage on this earth—is to seek and experience eternal happiness. One of the ways we find this is by creating things.

If you are a mother, you participate with God in His work of creation—not only by providing physical bodies for your children but also by teaching and nurturing them. If you are not a mother now, the creative talents you develop will prepare you for that day, in this life or the next.

You may think you don’t have talents, but that is a false assumption, for we all have talents and gifts, every one of us. The bounds of creativity extend far beyond the limits of a canvas or a sheet of paper and do not require a brush, a pen, or the keys of a piano. Creation means bringing into existence something that did not exist before—colorful gardens, harmonious homes, family memories, flowing laughter."  President Dieter F. Uchtdorf


     

There is a part of me that is so acutely aware that the time I have is limited.  I love to scrapbook, and I have literally thousands of pictures that I have taken over the years.  I usually scrapbook in the middle of the night when I can't sleep because of pain, worry, or just plain sleeplessness.  It gives me something productive to do rather than just watching TV or movies, plus I just love reliving the memories.  I spend a lot more time on journaling about the events than before I had cancer. That way, the my husband and kids will always have my thoughts and memories on things we have done together, or seen, or holidays etc.

Here are a couple of scrapbook pages that I have made recently.  The quote on the below page reads:  "There are two lasting gifts you can give to your children.  One is Roots and the other Wings."

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!

     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!