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

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 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.

I can't believe how long it has been since I last wrote something for my blog.  I just don't really feel like I have anything inspiring or interesting to write about.  I completed my week of chemo, and spent the next couple of days still feeling really yucky.  I still feel SO tired all the time.  My pain is getting worse in my hip and shoulder.  My mood lately would best be described as BLAH..... 
      I can't wait for sunny spring days.  The sun makes me feel so much better. 
     I am supposed to start another week of chemo pills tomorrow. I am going to put it off until Monday night because I bought tickets to the Utah Jazz game on Monday.  Our family is really excited for it. 
    I just don't have a lot to report about what has been going on lately.  All I do is rest, feel sick, rest, sleep, feel sick, and then sleep some more.  Very Blah life.
     I went out to lunch and dinner on Friday.  I went to lunch with my mom and sisters, and 5 kids under the age of 3.  That was fun, but stressful.  The kids got bored and were doing a choo-choo train around the restaurant.  We did get free Asphalt Pie because it is my Mom and Sisters birthday this week. 
    Then Dan and I went out to dinner with some friends on Friday night which was really fun, except I got really tired.  I can't eat much, but the company is great, it's always fun to talk and share some laughs with good friends.  Plus I have a fridge full of leftovers!!
    Saturday night we went to my Mom's house for her birthday.  It felt great to finally get out of the house after almost 2 weeks of being home bound.  I even missed church last Sunday.  I am hoping I make it there tomorrow morning. 
    So there it is, my very blah update.  Next week should be another blah week with having chemo pills and I have to go in for IV chemo again on Tuesday.  That's why I have to live it up this weekend and Monday, because come Tuesday, I'm going to be sick again.....  blah blah blah......

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."

     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

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. 

"All I have seen teaches me to trust the Creator for all I have not seen." Ralph Waldo Emerson

This quote has long been a favorite of mine.  Whenever I look at all of the beautiful creations of this world, I stand in awe.  My mind can not fully comprehend the majesties of all of this world.   The beauty of all of the seasons, and the changes each bring is a miracle.  The beautiful spring flowers, the hot summer days, the majesty of the fall foliage, the pureness of the first snow.  I love living somewhere that has different seasons.  Looking up at the moon and stars at night, and knowing that the sun will rise each morning.  How could all of this be a cosmic accident?  How could there NOT be a God who loves us, to create such a beautiful world for us to experience our mortal lives?  So this quote, "All I have seen teaches me to trust the Creator for all I have not seen."  reminds me to trust the creator.  He has infinite knowledge, and He is aware of each one of us, and loves each of us. 

I love each of the seasons, but I think I have always loved autumn the most.  Autumn brings cooler temperatures, a return to school, crisp fall weather, apple cider, beautiful fall leaves, the promise of holidays just around the corner.  It is a time of change.  I get to wondering if I am in the autumn of my life.  As I planted some tulips and daffodils a month or so ago, I found myself wondering if I would be here in the spring to see them bloom.  I try to enjoy each moment, and try not to worry about the future.  But the worry and fear always are there in the back corner of my mind.  I try to just trust my Heavenly Father that I will be here for as long as I need to be to accomplish my mortal purpose. 
      

Because my time on Earth will be limited due to this terrible, devastating illness that is cancer, I do more living each and every day, and I cherish each moment with my family and friends, no matter how big or small.  I take time to play in the leaves, smell the roses, watch the moon in the middle of the night, laugh and play, and dance in the rain.  I think it is a good reminder for all of us to do this.  None of us have any guarantees of tomorrow.  Remember this, and remember to live each day to the fullest. 

These beautiful autumn pictures were taken a month ago in Sardine Canyon by Sherwood Hills.  We had so much fun playing in the leaves and I love all of the great pictures!