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
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.
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!!!!
Hey Everyone! This is Dan.
We are in beautiful San Diego California and are enjoying the magnificent weather (not to hot, not to cold) and the amazing surroundings. I have always wanted to take Amber to San Diego. I visited with friends on spring break in 1992 and dubbed it the most beautiful "big city" in the USA. Now that I finally made good on my promise to bring her here (thanks to Ammon) she is a believer. The Ocean, the city, the temperate weather, the flowers, trees and folliage everywhere even in the freeway medians just make the city. Amber will probably blog about the trip when we get back but I just had to tell one thing Amber did today that is indicative of her approach to life now. We drove over a huge bridge to Coronado Island to Coronado Beach today. The city of Coronado had these huge motorized handicap beach chairs to get people in her condition out to the water. She drove it out there and laid on a beach towel to relax which is her favorite thing to do at the beach. The kids were all out on in the water and rolling around in the sand seeing how much sand one swimming suit can hold and playing in the water intermittantly. Amber decided that despite her condition she was not going to miss out. She strolled out to the water and walked right in. I thought it was just to get her feat wet and be closer to me and the kids so I went back to watching Ammon chase the birds and throw sand at them. A couple of minutes later I hear what I thought was Amber screaming and went into full "Bay Watch" mode to go save her. As soon as I caught sight of her I realized that she was squealing with delight (and from cold water I assume) and laughing as she frolicked in the waives. I called out to her to be careful because it was deep enough, and the waives big enough, to cause her to lose her balance with her weakened hip. Afterall I am not as fast running and swimming as David Hasselhoff although I would go for it if needed. She ignored my pleas just like the kids had been doing and added giggling to the squealing and continued playing in the waives all by herself as the kids also watched in disbelief from the shore. She actually did lose her balance on an extra big wave and lost her footing and lost her favorite sunglasses. But there was no "I told you so" from me because if I live to be 100 I will never be able to erase the sight and sounds of my sweetheart living every MINUTE like it is a gift because to her it truly is.
I'm back from our wonderful vacation. It was so beautiful and warm. Truly paradise. Dan and I had a wonderful time together. I missed our kids so much, but it was so good for Dan & I to have that time together. My laptop broke while we were in St. Maartin, so I wasn't able to email home. It is still broken, so I am using our 10 year old ancient computer.
The villa we stayed at was so comfortable and it was right on the beach. Every morning Dan bought delicious french pastries, which we ate on our balcony while watching the waves. It was heavenly. We relaxed on the beach, and I slept a lot. There is something about the sounds of the waves crashing that just lulled me off to sleep.
Two of the days we went to another island, Anguilla. We went to a white sandy beach that had an amazing reef right off the coast, where we snorkeled with hundreds of colorful fishes. The coral reef formations and plants were breathtaking. We even saw a Manta Ray, and so many different kinds of fishes. It is so fascinating to see a whole other world that exists under water. I loved floating in the water, swimming with the fishes. Floating is the best pain relief. It is so easy to float in the warm salt water of the caribbean.
I am still trying to readjust to the time changes. As much as I missed my kids, it is hard to come back and dive back into the day to day routine. Yesterday there was no school, so we spent the day hanging out. That was nice.
Once I get my laptop fixed, I will upload some pictures from our vacation.
When I began chemo again back in August, we were told that I would probably be on chemo for 6 months to shrink the tumors back down. It has been 6 months, and the tumors have not shrank. They are a little bigger, and my last tumor markers went up again. Dan had originally wanted to plan a trip in February to celebrate the completion of chemo. It is February, and because the chemos haven't worked, there is no end in sight.
Even though I am not done with treatment, we are going to go away on vacation anyway, just to celebrate life. We used to say "someday we should do this." or "someday we should go there". When your somedays become limited, and your life is going to be a lot shorter than you planned, you need to make your somedays into todays.
Dan has been planning a trip to celebrate the completion of 6 months of chemo. I told him I wanted to go to a warm tropical island, where I can relax, swim, and refresh. He has been planning a trip to St. Martin/ Sint Maarten. I have tried not to get excited, because I didn't dare. I was too afraid that I would be physically unable to travel due to my condition. I haven't allowed myself to look forward to it. Now all of a sudden, it is time to go! This last week I have finally got on the internet and looked at stuff to do, and about this island. I have finally allowed myself to get excited this last week.
Back when Melissa was planning the Run for Amber, she hoped we would earn enough money to send our family to DisneyLand, and maybe even enough so Dan and I could also take a trip together. Due to the overwhelming success of the fundraiser, we were able to pay off all of our doctor bills from last year, have money to pay doctor bills this year, and go to DisneyLand and this trip.
We are so excited and grateful to all who have made this possible. It is going to be so wonderful to spend time with my hubby, and relax and get away from the worries and stress of cancer. This is going to be another dream come true. It is going to be hard to be away from the kids for 9 days, especially little Ammon and Caleb. I hope I don't miss them too much to enjoy myself. They will be in good hands with Grandma, though.
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!
This post is coming to you LIVE from DISNEYLAND. Someone forgot to tell my 2 year old Ammon that this is supposed to be the happiest place on Earth. Besides Ammon's 2 year old temper tantrums and a little bit of impatience from Dan, (he has a hard time slowing down on vacations and I move at the pace of a snail) everything has been FABULOUS!! The weather has been cooler than I had hoped, but tomorrow is supposed to be sunny and warm.
Monday we went to DisneyLand first thing in the morning. It was simply magical to walk in those front gates and see the amazing Christmas tree and decorations. Then who should we run into but Goofy, one of our ultimate favorite characters. Of course we got pictures and autographs. (I will add pictures once we are back home) We enjoyed a delicious breakfast from the bakery on Main Street, and then off to the rides. I had a motorized scooter that I rolled along in, so I didn't get too tired. We enjoyed rides, and my favorite was the newly redone Small World ride. We even got to see the amazing firework show. I was in heaven!!!! The finished out the firework show with real snow. Beautiful!!!
Today we went to Universal Studios. It was a long drive there in L.A. traffic. Universal studios was very uncrowded, so we were able to get on all of the rides right away. The little kids, Ammon and Caleb, didn't enjoy today as much. Too much time in the car, and not enough kiddie rides. They did get to meet Shrek, Donkey and Fiona, and later Spongebob and the Simpson Family. On our way out we saw Curious George, who Ammon loves. He was so excited, he ran and gave him a hug. Totally precious! Then we found a stuffed George for Ammon to take home as a Souvenir.
I actually went on the Jurassic Park ride and the Mummy ride, but would you believe that the ride that caused me the most pain was the studio back lot tour? Riding in that tram up and down hills, and then experiencing and "earthquake" made my body quake with pain. I survived all those fun rides, and Dan "enjoyed" the fun ride home driving once again in L.A. rush hour traffic. It took 2 hours to drive 40 miles. Let me tell you, our hearts were pounding more than they were on any of the rides we've been on. Utter crazy-ness. So many times I said, someones going to crash into us! We survived, and we were all so glad to arrive back at the hotel.
Tomorrow is another Disney day. We are so excited for our Character breakfast at Goofy's Kitchen. Then tomorrow we are going to split up. My Mom and Dad are going to stay with me and Ammon and Caleb, and we are going to devote the day to them and rides and activities for their enjoyment. Dan is going to take the older kids on all of the crazy roller coaster type rides. That way everyone will be happy rather than complaining about rides that are not suited for their age. It is also supposed to be 75 degrees tomorrow. I hope it is, because it seems like I have been cold the whole vacation. I really would love a warm sunny day.
I typed this on my Dad's computer so I can't add photos, but I will when we get home. Thanks again to everyone who made this trip possible. It has been wonderful to get away from all the stresses and worries of daily life, and spend magical time together as a family making precious memories. Thank you for making my wishes a reality!!!!!!!!!!!!!!!!!
My kids (and I) are bouncing off the walls with excitement for DISNEYLAND!!! We are SO EXCITED!! We leave on Sunday. Bekah and Abby wanted to start packing when they got home from school today. I told them we will work on it tomorrow, and then off we go on Sunday morning. Thanks again to all who made this trip possible! I am bringing my laptop so I can post some pictures and share the fun and memories while we are there. I am so glad we get to leave all the worries and stresses of regular life behind and go to the "Happiest place on Earth".
Wow, time has been flying. Sorry it has been so long since I updated my blog, but no news is good news, right?
An update on my condition first: Right before Dan & I went to Puerto Rico I had X-rays done and my tumor markers blood work done. The cancer in my hip, pelvis, and back is stable. My blood test tumor markers actually dropped from 43 to 28. That is wonderful news. I hope I will stay stable for years and years!!!!
Puerto Rico was fabulous! It was so beautiful and warm. The beaches were absolutely gorgeous!! I felt so much better in the warm, plus Dan was really good at keeping me on top of my meds so I wouldn't be in pain. Swimming in the Caribbean was amazing. The water was so warm, and I could just float forever. That was the best pain relief- that weightless feeling while swimming.
Part of the time we stayed with a family Dan knew from his mission, the Hernandez's. They were so nice, and it was wonderful to get to know them. They feel like family!
The other time we stayed at a bed and breakfast right on the beach. We had a balcony you could go out and watch the ocean waves crashing on the beach. We had a yummy breakfast every morning, and we met lots of nice people who were also staying there.
We took a sailboat trip to some islands, and snorkeled along the coral reef. We saw so many beautiful fishes, and we even saw a dolphin from the sailboat. We got a little seasick on the last part of the trip, so I may be hesitant to sail again any time soon.
All in all, it was a very relaxing and wonderful vacation. It is always nice to come home; I really started to miss the kids the last 2 days. Of course, as soon as I get home the are fighting with each other, plus all of the homework, housework, temper-tantrums, cooking, teaching piano lessons, and all the other joys of being a stay at home mom that makes me want to hop on the airplane and fly back to paradise. Such is life though. If we didn't have to deal with all of the trials of life, we wouldn't appreciate the precious moments as much.
 The sunsets were so breathtaking. You could literally watch the sun sink in the horizon. The sunrises were equally beautiful. Almost every night we would eat dinner at an ocean-side restaurant. The food was amazing, and we enjoyed non-alcoholic pina-coladas.
 This picture is Dan & I at the top of a watchtower in in the El Yunque Rainforest. This place was totally amazing. It was so lush and green, and you could hear so many birds chirping in the background. There were waterfalls, and beautiful flowers.
 El Yunque Rain Forest
 Beach front restaurant where Dan had lobster. We are with the Hernandez's, the people we stayed with.
 Dan with his whole lobster.
 Old San Juan
 Balcony at the Bed and Breakfast we stayed at: Luquillo Sunrise Inn
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