To start off, I thought I would give a quick status update.  I had some really bad pain issues these past few weeks.  I had some new pain down my back, which was nerve pain that caused pain all the way down my leg into my foot.  I was suffering the most since I went on hospice.  Finally on Monday I was feeling better.  My nurse and doctor worked daily adjusting medicines and doses to try to relieve my pain.  I am so glad they were successful.  I was worried to have new pain, and it is discouraging to know that the cancer is growing and spreading and getting worse.  

Because I am on hospice, I can no longer have scans done to see where and how much the cancer is growing..  The assumption is that the cancer IS growing and it will eventually get to the point where it kills me.  Hospice's role is to keep me comfortable while this happens, not prevent it from happening.  
When I stopped chemo, I felt guilty.  I thought maybe I should research different trial drugs or something.  I felt that choosing to quit chemo was choosing to die.  Dan always says that deciding to do chemo is not necessarily deciding to live, because the chemo may not work and you die anyway.  Or, the chemo does damage to your liver and heart (like it was doing to me) and you die quicker.  Choosing not to continue chemo is not choosing to die either.  I did not choose to get cancer, so choosing not to poison myself to maybe slow down the cancer or shrink it, is not choosing to die.  

The only choice I have is how I live each day I have.  How I choose to treat those around me, how to make every day count.  That is all any of us have.  Life is not guaranteed.  I realized this again when a dear friend of ours died suddenly from blood clots after having knee surgery.  He was only 41 years old.  How grateful I am to KNOW that I am dying, and to have the time to prepare.   I don't think I will ever be ready.  How could I be ready to leave my friends, family, and my children.  Ugh.  Sorry for be such a downer!
 
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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.   

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Dan and I at Anniversary Inn

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Bear Lake July 2009

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The biggest difference in my life since I stopped chemo and went on hospice is the quality of my life.  I was so sick on chemo, and I wasn't living.  I would go days without getting out of bed.  Now I am up and about every day, even though I still sleep a lot.  I feel good, I really do.  There are times when I am completely pain free if I remember to stay on top of all my meds.  The biggest challenge I face is still being tired, and wearing out quickly.  I don't have a lot of energy, and I need a lot of sleep.  However, I feel a thousand times better than when I was so sick from the chemo.   

 My hospice nurses are also amazed at how well I am doing.  They tell me often that I am holding up way better than they thought I would based on when they first met me.  I had just completed 8 months of chemo, and was so beat up from it.  As my body has healed from the chemo damage, I have been able to eat more, and therefore have more energy.  Words can not explain how miserable I was, and how much better I feel now.  I just pray that the medicine continues to keep me as comfortable as possible.  

I wish I didn't sleep as much as I do.  It makes me feel like life is just slipping by while I sleep.  I miss so many minutes and hours with my children, but I am so grateful for the help of my mom and mom-in-law spending the whole day helping me and caring for the kids. 

 
"What Matters Most Lasts the Longest"
I really cannot believe how fast time flies.  I have been trying to get a post done for more than a week.  Our family has been doing pretty well.  We are just living our own brand of normal and trying to live every moment to the fullest.  That does not mean that we are doing fun, thrilling, entertaining things every moment.  It also doesn’t mean that we are running around filling every second with what ever whim or activity comes to mind.  I think we are trying, sometimes more successfully than others, to make every moment we can fulfilling and meaningful in some way.  An extra long hug, or running back into a room one or two more times for a kiss, reading just one more book or playing one more game with Ammon, an extra couple of scripture verses read as a family, extra moments spent in family prayer, letting the kids stay up just a few minutes more, letting them play night games with the neighbor kids a few minutes later, a late night run to Sonic for a cream slush.  If you take out our vacations our life is really quite simple and may not seem that busy or even exciting.  But I have learned that life can be simple and not too busy and still be amazingly fulfilling and joyful.  I think the secret is enriching your life by spending more time on the best things.  Many of the things that we clutter our lives with, while they are not bad, are also not the best things.  Amber’s illness has given us the unique opportunity to cut out almost everything that is not absolutely essential in our lives.  At first we sorrowed that parts of our lives that we thought made us happy or made us who we are were being lost.  But what we found was that while we miss some of the things we gave up, we were left with what really helped us be our best selves and what was most essential to a happy, fulfilling, existence.  That is faith, love, and a job to pay the bills.  We have learned that what is most important to us is our relationship with our Heavenly Father and Jesus Christ, our relationship with our family, and taking care of our family.  So with our simplified life we enrich our lives by enriching those areas.  We certainly are not perfect at this but as we have gone through the process I described we have become more content and found much joy.  It’s definitely a case of addition by subtraction.  

My Sleeping Beauty
Last year we referred to our experiences as the “Year of a Million Dreams”.  Now Amber is literally living that phrase.  A little bitter-sweet poetic justice I guess.  Our wonderful hospice team has told us from the beginning that Amber would sleep more and more as her body progressed through the stages of shutting down.  That has really been the case.  A month ago Amber routinely slept until about noon and now she sleeps well past that.  Her record so far is yesterday when she slept until 4:00PM.  This is not the normal kind of extra sleeping most of us do when we wake up and then pull the covers over our heads and try to sleep and extra twenty minutes or an hour all the while we can hear every bird chirp, neighbor’s lawn mower, etc.  Her sleep is a deep sleep where five kids down stairs playing, watching TV, and sometimes fighting, the a friend cleaning house, her mom coming in for a laundry basket, and the phone ringing does not wake her up.  She does not even move while she sleeps.  Sundays are really difficult for Amber.  She loves to attend church services and really draws great spiritual strength when she attends.  However, our services begin at 9:00AM and it is so difficult for her to force herself out of bed 6+ hours earlier than normal to attend.  She does it anyway though.   She gets up at 8:30AM, gets ready and arrives at church just in time.  She would love to attend Sunday School and Relief Society (a class for women) but she can hardly stay awake during sacrament meeting so she goes home and sleeps for 5-6 hours.  It’s extremely difficult for her to be awake 6-7 hours earlier than normal but she does it anyway.  Now you understand what I mean when I say Amber is literally living the “Year of a Million Dreams”.  We are blessed to have Amber’s mother and my mother up at our house taking care of the kids while I am at work and Amber is sleeping.  We have great children but I know that without our mothers I would never get anything done at work worrying about their well being and if they were allowing Amber to rest. 
Suggestion Box
We are in a quandary about what to do next.  For the last few months we have been hoping and praying that Amber would be well enough to do the things we planned for May, June and July.  We were concerned that she would decline too much to do San Diego, Wolf Creek, and Bear Lake.  She has been blessed with slow decline at this point and was able to enjoy all of those vacations plus the last minute cruise we planned a couple of weeks ago.  If you have any simple but enjoyable outing or vacation ideas leave a comment on this post with the details.  It needs to be within 2 hours of home, and not require much physical exertion for Amber or be wheel chair accessible.  If your activity or vacation is selected you will be rewarded with the satisfaction of knowing you helped us live every moment to the fullest.  

Note from Amber’s secretary
Amber is still well enough to have visitors.  She enjoys talking and enjoying the company of others.  Because of her extended sleep time, evening visits are best.  Please call me at 435-730-2656 cell to schedule an appointment.
I reserve the right to cancel or end the scheduling of appointments for visits altogether depending on her condition.
 

For this blog post, I thought I would share the answers to some frequently asked questions.  For those who have wondered, and for those who maybe were afraid to ask some of these questions, I am more at peace and able to talk about this whole hospice and preparing to die thing.  

QUESTION?  What is hospice?  I thought it was something people had right at the very end of their life?

ANSWER:  A person can have hospice once their life expectancy is 6 months of less.   The benefit to having hospice care start sooner rather than later is they can do a better job at pain management and making your last days, weeks, or months as easy and high of quality as possible.  The doctor comes to your home so you don't have to drag yourself out to a doctors office when you are feel terrible.  They bring your meds to you, and know right what to give you to help with whatever is causing you pain or discomfort.  Hospice also offers emotional and spiritual help with a counselor and a chaplain if needed,  They help the patient and the family.  My nurse is so kind and caring.  She is great with the kids, and always checks up on me, and visits a couple times a week.  

QUESTION:  How are you REALLY feeling?

ANSWER:  I REALLY am feeling pretty good, and a whole lot better than I thought I would be when it was time for hospice.  I am really tired.  It is a different  kind of tired.  I sleep really deeply for long periods of time.  I go to sleep at night, and then sleep until 11am-12:00pm.  A good solid 12-14 hours.  Once I wake up for the day, I am up for most of the day.  I occasionally need a nap late afternoon or evening.  My pain is honestly managed wonderfully.  I have different meds for each of the different kinds of pain I suffer from.  It is truly amazing how well hospice doctors and nurses are at finding the cause of my pain, and treating it.  I am also doing really good emotionally and spiritually as well.  Like I said in my last post, I truly am at peace.  So I am doing better than I expected, and when I say I'm doing pretty good, I really am pretty good.


QUESTION:   How long do the doctors give you?

ANSWER:     My oncologist gave me 3 months to live back in the middle of April.  So if we were going by the Oncologist's prediction, I only have a little over a week.  So unless something completely unexpected happenes, I can safely say that the oncologist was wrong.  (THANK HEAVENS!!)  However, according to my hospice nurse, I am doing way, way, better than they thought I would.  I am still able to eat, haven't lost any weight, and still am awake for about the same amount of time as I am sleeping.  Dan and I are planning on a cruise on July 16th kind of as a celebrating that I'm still alive kind of thing. 
Seriously, though, I have no idea when I am going to die.  We hope that I make it through the summer and to my 31st birthday which is September 15th.  I don't know when I am going to die any more than YOU know when you are going to die.  All I know that it is going to be a whole lot sooner that I would have hoped, even though I have survived terminal IBC cancer way longer than the statistical 6-12 months.  It has been over 2 years that I have had stage 4 terminal cancer.

QUESTION:  What can we do to help?

ANSWER:  Our physical needs are being met so well by family and friends, it is hard to ask for more help.  Prayers are always needed and welcomed.  Whatever you may be feel prompted to do is probably the best thing to do to meet a need,  So many times our need are met without us even asking for help.  P.S. Chocolate is the best medicine!  (Only half kidding..... LOL)


QUESTION: Can I come visit you?

ANSWER: I don't get out of the house very often, so I love to have visitors.  I do sleep a lot, and some days I don't feel too great, so we ask that you call first, and we will let you know when a good time to visit would be.  And if you are feeling under the weather at all, please don't share germs.  Wait until you are healthy to visit.

So, there are the answers to a lot of questions that we receive. 




 

I have had a difficult time feeling like I want to write anything for my blog.  I am so grateful to Dan for his last couple of posts.  I am glad that he wrote such touching posts, and I am amazed that he did it all on his own.  

The reason it has been difficult to write, is that I have been hesitant to share what has really been going on with my cancer and treatment.  So it is confession time.

2 months ago, after much researching, praying, talking with counselors, doctors, and family, we came to the realization that chemotherapy was no longer a viable option.  I was so deathly ill from doing 9 months of various chemos, and all the test results kept coming back that that the chemos were not working.  I had no quality of life, and I felt like I was just wasting the time I had left chasing after treatments that were killing me, and not the cancer.  We decided that the time had come to stop chemotherapy, and change from aggressive care to palliative care.  

I have had hospice care for the last 2 months.  It is truly a miracle how much better I feel now that I am no longer poisoning my body with toxic chemicals in hope of having a longer life.  I was not living while I was on chemo.  All I did was sleep and feel miserable all the time.  With my new hospice Doctor and Nurses I feel so much better.  They are so on top of keeping me pain free and comfortable.  I am able to do so much more, and feel so much better.  It has been a great decision.  I am still going to have monthly Zometa infusions to keep my bones from breaking as the cancer progresses.  We also have a social worker who has been visiting weekly with me and the kids.  He always brings a fun activity that gets the kids talking about how they are feeling.  He also has been a great sounding board for me, and has helped me deal with the gamut of emotions that I have been dealing with.  With this hospice team in place, they are taking wonderful care of all of our needs.

At first when I stopped chemotherapy, I really struggled emotionally.  It was so difficult to feel like I was giving up.  It is still hard to think about dying, but I feel mostly at peace.  I am enjoying every minute, and we have been cherishing the good times.  We are happy and at peace.  I know that my life is in Heavenly Father's hands, and that He will preserve my life for as long as I need to be here.  I don't need treatments of men to prolong my life.  I know that I will be here for as long as I am supposed to be.   I trust that my Heavenly Father is taking care of me, and we are at peace.

I have read several books  these past couple months about death and dying, life after life, and about hospice stories.  This knowledge has brought peace to my heart, and a small part of me looks forward to what comes next after life.  I know that I will still be here for my family, and that I will have an active role in their life.  I know that I will still be there for all of their weddings, graduations, baptisms, births of grandchildren, and family events.  I know that the life after this one is glorious and wonderful, and that I will be with my loved ones who have gone on before.  

I have one request from all of my dear friends and family.  We are at peace with my decision to no longer fight my cancer.  I don't need to hear about this miracle diet, and that Doctor that can cure cancer in Mexico, or this new chemo trial or drug..  My destiny is not to have my cancer cured.  We understand that, and it is okay.  I have done all that I could physically endure to fight my cancer, and I have no fight left in me.  And that is okay.  I fought hard, and I won so many battles.  It is a miracle that it has been 2 years, and I am still here.  I am eternally grateful for every day of that 2 years.  I have been blessed, and I am continually blessed every day.  Life is still good.

 

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 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!!!!

 

I am sorry I haven't posted this update sooner.  I got the results from  my brain MRI, and they are good!  My brain tumor has continued to shrink, and there were no new tumors.  Needless to say, we are all thrilled. 
    I have enjoyed this last week during my off week of chemo.  We had a wonderful Easter, and a fun spring break. 
   I fully intend on doing a longer entry soon, and plan on adding pictures from our St. Maarten trip, Easter, and activities we have done lately.  It is just hard for me to type right now because I have tumor pressing on the nerve of my right arm, making my arm and hand numb and tingling, and my fingers aren't working right.  Very frustrating.  It is a priority to get this blog and picture page updated this week, so check back!

 

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. 


 

   Dan pulled some strings on Friday and got Dr. H's secretary Meridan to fax him a copy of my scan results.  Preliminary test results show that my hottest spot on my left hip is not as active, but all of the other bone mets are growing hotter than they were before.  Not a whole lot hotter, but not shrinking and going away either.  No mention was made of my liver, whether it was okay or not.  Very frustrating! I guess I can assume it is okay otherwise the radiologist would have said something.  The most concerning thing of the report was that my right lung shows uptake with mild patchy density in my right lung with mild airspace disease.  I don't know what that means, whether this is cancer or not.  So, I went to the University of Google to try to figure out it out, but I'm still not sure.  I guess that is what the oncologist is for.  I will have to wait for my next appointment and see what he thinks. 
     I was really hoping for some concrete evidence that this chemo is either working or not working.  It seems like it may be slowing the cancer down some, but not shrinking it.  I was hoping to see shrinking tumors, because that would make it easier to continue chemo.  Or at least maybe see a lot of new growth so we know that this chemo isn't working, and then I could quit that one and maybe try something different.  So all in all, no real answers.  Not really bad news, but not good news either.  I guess we will just wait and see, continue doing monthly tumor marker tests to track tumor growth, and pray for good results. 
    I really think one of the hardest things about cancer treatments is the not knowing.  Not knowing which chemo to try, not knowing if it is working, not knowing how long I will survive, not knowing whether I am wasting the time I have left by being sick from chemo.  ARGGHHHH!!!!  It just makes me want to scream!!!! 
    I want definite answers.  Yes or no. Black or white.  Not these never ending shades of grey!!   I think it just always comes back to faith.  Faith that Heavenly Father knows what is best, He can see the big picture, and He knows the end from the beginning.  I just wish I could know that also.