"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. 


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!