Just a quick message to all of my blog readers. I would like to thank you for all of your kind words of love and support. We read each and every message that you post, and even though it is not possible to reply to every comment, please know that we gather strength and take great comfort from you. I know that all the prayers you offer in my behalf are heard, and you will never know how much they help me and my family.
Tonight as I am so worried for my Pet-CT scan, Dan was reading me your comments as I rest. I have felt so much peace and comfort. As you are prompted to share your thoughts and experiences, please know that your words are truly inspired, and are usually just what I need to help me. So as many of you say that I inspire you, I want you to know that all of you inspire me, you help my faith, and help me find the strength to carry on. To those of you who have also shared your personal experiences to help me, I thank you so much. You will never know the comfort that your words and messages bring to both me and Dan.
I know that Heavenly Father answers our prayers, as well as some of our secret worries and longings through other people, and I don't doubt for a moment that He works through all of you to share stories that answer questions or worries that I have. I thank you all from the bottom of my heart. Thank you for sharing our journey with us. We could never make it without you. Thank you, and God bless you all!!!!!
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!
First of all, i want to thank all of my blog readers for your love and support. I appreciate your words of encouragement and support, and for not looking down on me because I am weak sometimes. Thank you!!
I was archiving my blog this morning, and I came across a post from last January very similar to my last post. There just must be something about this time of year that triggers feelings of despair and sadness. I am still struggling emotionally right now, but I am trying to refocus and change my perspective. I need to remind myself that if you look for negative, you find it, but if you look for positive, you will find that too. I have been focusing too much on the bad things about cancer, and have forgotten all of the good things. For example, I hate that I can't cook and clean, but I am so grateful for the kindness of others cooking and cleaning for me. See, it is all in the perspective. I am going to try harder to focus on the good and not the bad, and hope that I can find strength and faith to deal with cancer and all of the hard things that go along with it.
I am off to the oncologist today. I didn't cancel my appointment . I will have herceptin and Zometa today. I should have been taking Xeloda this week, but I haven't been able to bring myself to take it. I am having a hard enough time dealing with life right now without adding all of the side effects and misery of one more thing.
We took the kids to Chuck E. Cheeses last night for a fun family home evening activity. They all had a really good time (even though it exhausted me). Another good thing is American Idol starts tonight!!!! Yippeee!!! See, I can still enjoy life even though I have cancer. I just need to remember to take the time to enjoy the little things, and quit feeling sorry for myself and focusing on all of the things I can't do.
Let me just start this post by saying I am sick of cancer. I am sick of chemo. And I am sick of being sick. Even though this last week was an off chemo week, I was still very tired all week, and wasn't able to do much. I am really struggling emotionally, I have feelings of depression, anger, and hopelessness. I wish that I didn't have cancer, and that I could just have a normal life. All I have ever wanted to do is be a wife and mother, serve in church and serve others, share my talents etc. Now all I do is lay around sick all the time. I struggle with feeling bitter about what my life is now. Then I feel guilty for feeling that way. Having cancer is a never ending roller coaster. Sometimes I feel up, and hopeful, but then there are the low valleys that are dark and full of despair. Part of me really wants to just quit chemo and be done with it. I hate taking the chemo, and being sick, and I don't even know if it is working. I wish I could see some improvement, but all of my cancer areas are the same. I don't know if the chemo is buying me more time, or if it is just destroying the quality of the time I have left. It is so frustrating and agonizing.
The highlight of my week was on Thursday when Dan & I were able to go out to dinner with another couple who are battling IBC. Janeal was diagnosed with IBC 6 months ago, and goes to the same oncologist as me. We spent 4 and half hours with them, laughing, crying, and sharing our experiences. What a blessing it was to spend time with people who know EXACTLY what we are going through. They have so many of the same thoughts, fears, worries, struggles etc. I am so grateful for the miracle that brought us together. I hope this is okay with Janeal, but I thought I would share her website: www.jsfight.blogspot.com She is amazing, and a lot stronger than I am. She is also battling Thyroid cancer at the same time. She is younger like me, and has 3 small children. Her and her husband Bruce are just amazing.
Anyway, I am sorry to be so down, but I need to be honest. This blog is my journal of my battle with cancer, and it needs to be real and honest. So after I am gone, my family can have an accurate knowledge of me and my battle with cancer. I'm not always strong and faithful, I have doubts and anger, and I need to be honest in sharing that. Thank you for bearing with me, reading my ramblings, and hopefully you all won't think less of me after reading this.
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
It has been a while since I did an update on how I am doing and how my treatments are going. This is an "on" week, where I take Xeloda 3000mg a day for 7 days. I began the 7 days Sunday morning. I asked the Dr. for some better nausea medicine, that way I won't be as sick this week. I had Herceptin and Zometa on Dec. 23rd, so I was pretty tired on Christmas. I have had to increase my pain meds because of increasing pain in my left hip, and also right shoulder. The tissue on my right chest wall and the cancer in my shoulder area seems to be growing. I am having circulation problems in my right arm, and the Dr. think this is because of cancer blocking my lymph nodes on my right arm. My hand and arm are purple sometimes, and I have pins and needles and pain in my hand and arm.
I am always very fatigued, and will take long naps during the day. I feel like I am just missing life as I sleep the day away. I hate feeling tired, and wish I had more energy.
I also have been having localized pain in my head, as well as occasional vision problems. I am holding out hope that this is just from damage from my original brain tumor, and not a new one. I had a brain MRI Monday night at 9:30p.m. I will be anxious for the results, and hope that I get good news. So, that is what has been going on, and I will post once we get the results from the brain MRI.
The treatment of Xeloda is going okay. I have figured out which pills to take at what time to maximize their effectiveness against the nausea and diarrhea caused by the Xeloda. I am extremely tired, and take a 4 hour nap each afternoon. Thank you to all who are willing to help watch my kids so I can sleep! Today is my last day of pills, and then I get a week off! Yipee!
My pain in my hip and shoulder has been pretty bad. Going up and down the stairs is extremely difficult. I have had to increase the amount of pain meds I have to take, and I think that is contributing to my fatigue along with the chemo. My brother said maybe I was hurting so bad because cancer cells are dying off. Wouldn't that be wonderful!
Please check out the picture page for more great pictures that my sister took at The Run 4 Amber. They are awesome!
 I received this great plaque from Sharon R. and Michelle S. I saw this saying at Sharon's house and loved it, and she and Michelle so kindly made one for me. It is so appropriate, and a reminder that we can do things that are hard, even if they seem impossible!
We had an interesting conversation with the doctor Wednesday. I pitched my idea of discontinuing the Gemzar, and then taking the rest of November and December off from chemo. Not a good idea, I guess. Dr. H. was okay with me quitting the Gemzar because of the horrible side effects, but if I were to take 2 months off from systemic chemo, the cancer would most likely spread and be harder to get under control.
So, the new plan of action is to try an oral chemo called Xeloda. From what I had read about this drug, I was certain that this was one drug I DID NOT want to take. The side effects are pretty bad and numerous. Besides the standard nausea, vomiting, diarrhea, mouth sores, stomach aches, flu like symptoms, body aches, bone aches, muscle aches, stomach cramps etc. it has a nasty side effect called Hand and Foot syndrome. The palms of your hands and the bottoms of your feet become red, rashy, burning, itching, blistered, and raw. There are steps you can take to reduce this, like using certain creams at night and wearing specials socks and gloves. But still, come on, I'm going to willingly swallow pills that cause these side effects??? Really, though, what choice do I really have? We asked Dr. H. if I didn't do any more chemo how long I would have left and he said 4-6 months, and it wouldn't be pleasant. As the cancer progressed, I would be more miserable than what any chemo could cause. Well, when you put it that way, I guess I will try the chemo.
The good thing about the chemo is it is easy to change doses if the side effects are too bad, and we worked out a compromise where I would take it 1 week on, 1 week off instead of the standard 2 weeks on, 1 week off. Also, there is another chemo pill that usually is prescribed together with Xeloda called Tykerb. But when you add Tykerb, it makes the stomach side effects even worse. The plan is to wait to add the Tykerb until after Christmas. This way I am doing SOMETHING to battle the cancer, without hopefully compromising too much quality of life.
Tykerb is another drug for HER2+ cancer, and it will take the place of Herceptin. It attacks the cancer in a different way than the Herceptin, which is good because it seems like my cancer is either too numerous or no longer receptive to Herceptin like it was at the beginning. I am praying that I have a "miraculous response" to these new chemos like I had at the beginning with the Herceptin and Taxol.
I also had tumor markers blood test done Wednesday. It will be interesting to see what they are. I also had a flu shot, and of course, murphy's law, my arm got all swollen and I have a red inflamed area about 4 inches in diameter, and it hurts and burns and itches. At least I'm not sick from chemo. This side effects of just the Herceptin and Zometa I received is just some bone pain, and tired and no appetite. My red blood counts were also really low, but only .1 higher than what they have to be so insurance will pay for a Procrit (red blood cell production boosting) shot. No wonder I am so tired!
Oh yeah, for those of you wondering about our Las Vegas trip, it was very relaxing. I spent A LOT of time napping, and resting, and we enjoyed a couple of shows, eating at some great restaurants, visiting my Aunt Jan and Uncle Trent, and sleeping. It was really nice to get away with Dan and be able to have time to talk and enjoy each others company.
 These gorgeous flowers sent by my Aunt Jan were waiting for me one week when I got home from Chemo. They cheered me up, and were the most beautiful pink flowers that stayed pretty for a long time. The picture just doesn't do it justice!
"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!
I had another bad week from Chemo this week. I came home and crashed Tuesday after chemo, woke up sick in the middle of the night again, and the days of nausea, fatigue, fever and chills, diarrhea, stomach aches, body aches, and no appetite began again. I spent Wednesday through Saturday sick in bed. I finally was able to eat a little chicken noodle soup on Saturday, and today I have moved from bed to the family room recliner. I have been able to eat little bits of food today. I am still really weak and don't have any energy. I tried to get up and get ready for church this morning, but the exertion almost made me pass out.
When we went to chemo on Tuesday, we asked the doctor about my bad reaction to chemo. He seemed perplexed by my response. He told us that the fever and chills may be from a the volume of cancer cells dying off, but this chemo usually has a low rate of the other side effects I had experienced. We were kind of befuddled by this, because all of the side effects I had experience were listed on the paperwork he gave me on Gemzar. I don't know if I am sick from Chemo, sick from cancer, or sick from the cancer responding to the chemo. All I know is I am sick of being sick.
Once again, we couldn't get through it without all of the daily help we receive. We appreciate the meals, help with the kids, small treats, friends peeking in to check on me.
Also, I smile every day when more and more info comes in about the "Race 4 Amber" that is being planned by our friends and neighbors. It amazes me how many people are donating time, money, prizes, to make this a successful event. I am amazed by the army of people who care for our family, and who are working so hard to make such a wonderful event for us. If you haven't read about it yet, full details are on the homepage: www.amberchase.weebly.com
Date: Saturday November 1, 2008 (You all know you'll have Halloween candy to work off) Is either a 1 mile or 5k.
Time: 10:00 am. Race is scheduled to start at 10, so come early and register.
Where: Perry Park 2450 West 900 South, Perry, UT
There will be auctions and prizes, including pink Race 4 Amber bracelets for the first 200 registered, and prize for the "pinkiest" person.
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