I dreaded having to write this blog because I knew it would make me cry. I have been feeling very sick to my stomach and tired the past 2 days. I threw up my morning pills yesterday because I took them on an empty stomach. I take the anti-nausea drugs, and they do help in genereal, as long as I am lying down. Life here at home keeps going around in a circus with me in the middle of it, watching from my sofa. Yesterday, my mom left to take care of my brother's children for the weekend. Then, David took Brenton and his mom to the Tabernacle Choir concert last night. I stayed home with the younger two.
Today, my brother Dave was so kind to invite my kids over all afternoon and feed them pizza and play video games. My husband had some work to do on his computer, so I took a nap at noon and woke up 3 hours later. We got the kids back tonight and we watched a Hallmark movie called "Front of the Class" where a man with Touretts syndrome wants to become a teacher.
I haven't heard back from Elder Pearson about his schedule, but the stake presidency also wants to come and visit our family before church. The children are all excited to meet a member of the Seventy, if he is able to come tomorrow.
There are times like this week when I feel utterly helpless, except to ask the Lord for comfort. I acknowlede that his will will be done in every situation, so I don't pray to be relieved of my burdens, only that I might be able to bear them. With this philosophy in mind, I have been wondering:If I want to give my life up to the Lord, what is the purpose in praying for a miracle, and then be dissappointed when it doesn't happen? Basically, who am I to petition the lord for a situation when he already knows what the outcome will be? Isn't asking for a miracle the opposite of giving your will to the Lord?
I'll be asking some of those questions tomorrow and I'll let you know what happens.
Emilee
Saturday, December 13, 2008
Thursday, December 11, 2008
Thursday December 11th
Maybe I spoke too soon on Tuesday when I mentioned that I had been managing my symptoms. Yesterday (Wed.) was the worst day I have felt so far in this treatment cycle. I had hoped on Tuesday evening to attend the ward dinner, but I felt pretty sick to my stomach and I also didn't feel like dressing up and sitting around a table and talking to people. I stayed home with Nathan and Jonny, while Brenton went over to the dinner with the other youth who were serving the adults. Then I woke up feeling pretty sick on Wednesday, yesterday.
I took a long nap yesterday afternoon and when I got up, the children and my mom had completed a gingerbread house, each side decorated by one of them and the roof topped with necco candies for shingles. They had a chimney with a gelly santa poised to come down, plus a walkway made of smarties and even a green jelly wreath hanging on one of the walls. Mom spent all morning baking the gingerbread and she even thought ahead to bring a couple of the ingredients with her, plus the template to cut out the walls and roof, etc. It was a tradition at my house growing up, so I appreciated mom teaching my children how to carry on the tradition. I told the kids they could eat it on New Year's Day, just as my family had done.
I am now starting my second week of taking the oral chemotherapy, Xeloda. I think I would feel a lot less nausea if I didn't have to take those pills each day. In one week, I'll be done with the pills and then I hope to be feeling better before Christmas. I haven't done any Christmas shopping, but I am hoping to get out next week and buy some gifts. We continue to get small gifts from our neighbors and church members. Monday night, a family came to deliver some banana bread and their children sang us some Christmas carols. Yesterday some girls brought us cookies as their activity days project. My boys are always delighted to get sweets, since I don't buy many and we don't usually eat dessert. We always feel supported and remembered by the ward members.
I am feeling a little sad today, because I am thinking of all the things I can't do or enjoy because I am sick. For example, we were offered tickets to the Tabernacle Choir concert on Friday, but I knew I would feel too sick to attend. I am also sad that Brenton and Jonny are behind in some of their school classes. They got really bad midterm reports and I feel like it is all my fault because I haven't monitored their homework and assigments enough. Also, I feel like the boys are stressed because I am sick, so they worry about me and have to answer questions at school and church about how I'm doing, only they don't know what to say. My future health is always up in the air, since we don't know if I'll get better or if I will most likely decline until I die from liver failure. It is scary for the whole family when we worry about the worst outcome, meanwhile we have to press forward with faith, and count the blessings we have. I suppose my times of tears and worry should be allowed, as long as I remember the bright side and have hope in Christ. I'm still reading my book, "When you can't do it alone, take the Savior's hand." I've felt peace from reading that book, as well as from reading the recent conference talks and marking the words that inspire me.
A member of the Quorum of the Seventy, Kevin Pearson, is coming on Sunday to give me a blessing. I'd like to record it and have it to remember over and over, after he leaves. A family member told him about my illness and he called yesterday to set up a time to visit. I feel very humbled, that he would be willing to come and see our little family. He was so kind on the phone to ask me questions, and I must have sounded awful because I got emotional and started crying and blowing my nose. At least I now have something to look forward to, when he comes on Sunday. On Sunday, when I attend church, it is nice to be able to put my wig on and dress up and try to forget that I am sick and bald. Even if I have to rest right up until church begins, I do my best to take medication, put on my clothes and make it through sacrament meeting before I have to come home and take a nap. Perhaps when our ward schedule changes in January, the meetings won't conflict with my nap time!
It was helpful to let some of my feelings out today. Since I changed doctors, I no longer have free counseling available, but perhaps I can find a substitute. David wants me to ask my Dr. about a prescription for hospice care, which could provide our family with grief counseling and similar services. Thanks to everyone who reads this and to those who provide comforting comments and greetings. It is nice to know that so many people are thinking about me.
Emilee
I took a long nap yesterday afternoon and when I got up, the children and my mom had completed a gingerbread house, each side decorated by one of them and the roof topped with necco candies for shingles. They had a chimney with a gelly santa poised to come down, plus a walkway made of smarties and even a green jelly wreath hanging on one of the walls. Mom spent all morning baking the gingerbread and she even thought ahead to bring a couple of the ingredients with her, plus the template to cut out the walls and roof, etc. It was a tradition at my house growing up, so I appreciated mom teaching my children how to carry on the tradition. I told the kids they could eat it on New Year's Day, just as my family had done.
I am now starting my second week of taking the oral chemotherapy, Xeloda. I think I would feel a lot less nausea if I didn't have to take those pills each day. In one week, I'll be done with the pills and then I hope to be feeling better before Christmas. I haven't done any Christmas shopping, but I am hoping to get out next week and buy some gifts. We continue to get small gifts from our neighbors and church members. Monday night, a family came to deliver some banana bread and their children sang us some Christmas carols. Yesterday some girls brought us cookies as their activity days project. My boys are always delighted to get sweets, since I don't buy many and we don't usually eat dessert. We always feel supported and remembered by the ward members.
I am feeling a little sad today, because I am thinking of all the things I can't do or enjoy because I am sick. For example, we were offered tickets to the Tabernacle Choir concert on Friday, but I knew I would feel too sick to attend. I am also sad that Brenton and Jonny are behind in some of their school classes. They got really bad midterm reports and I feel like it is all my fault because I haven't monitored their homework and assigments enough. Also, I feel like the boys are stressed because I am sick, so they worry about me and have to answer questions at school and church about how I'm doing, only they don't know what to say. My future health is always up in the air, since we don't know if I'll get better or if I will most likely decline until I die from liver failure. It is scary for the whole family when we worry about the worst outcome, meanwhile we have to press forward with faith, and count the blessings we have. I suppose my times of tears and worry should be allowed, as long as I remember the bright side and have hope in Christ. I'm still reading my book, "When you can't do it alone, take the Savior's hand." I've felt peace from reading that book, as well as from reading the recent conference talks and marking the words that inspire me.
A member of the Quorum of the Seventy, Kevin Pearson, is coming on Sunday to give me a blessing. I'd like to record it and have it to remember over and over, after he leaves. A family member told him about my illness and he called yesterday to set up a time to visit. I feel very humbled, that he would be willing to come and see our little family. He was so kind on the phone to ask me questions, and I must have sounded awful because I got emotional and started crying and blowing my nose. At least I now have something to look forward to, when he comes on Sunday. On Sunday, when I attend church, it is nice to be able to put my wig on and dress up and try to forget that I am sick and bald. Even if I have to rest right up until church begins, I do my best to take medication, put on my clothes and make it through sacrament meeting before I have to come home and take a nap. Perhaps when our ward schedule changes in January, the meetings won't conflict with my nap time!
It was helpful to let some of my feelings out today. Since I changed doctors, I no longer have free counseling available, but perhaps I can find a substitute. David wants me to ask my Dr. about a prescription for hospice care, which could provide our family with grief counseling and similar services. Thanks to everyone who reads this and to those who provide comforting comments and greetings. It is nice to know that so many people are thinking about me.
Emilee
Tuesday, December 9, 2008
Tuesday September 9th
Things are going smoothly here, as mom is keeping the household (and the kids) in good order. I feel blessed that my side effects from the chemo are mostly under contol. When I have fatigue, I can rest or take a nap. When my stomach hurts, I take my medications and sip on sprite. When my throat hurts, I can use my magic mouthwash. As long as I lie down and rest, I seem to feel pretty well. I have enjoyed reading and watching some recorded holiday shows on TV. With the dvr feature on cable, I can look at the TV menu for the whole day and press record for any show, then the next day I can watch the show and fast forward the commercials. I can also record movies that are edited for television, so I don't even need to rent or buy dvds.
So far this week, I've only gone out once, to the chiropractor. Tonight our ward is having a catered dinner for adults, so I might go for a little while. I have been feeling more positive lately, as my illness has not been getting worse. Also, my pain is under control and I am more comfortable. It is my goal to start feeling better enough to do some scrapbooking again. That always makes me feel good, to look at photos and remember fun times our family has had together.
Thanks for your prayers. I think they seem to be working!
Emilee
So far this week, I've only gone out once, to the chiropractor. Tonight our ward is having a catered dinner for adults, so I might go for a little while. I have been feeling more positive lately, as my illness has not been getting worse. Also, my pain is under control and I am more comfortable. It is my goal to start feeling better enough to do some scrapbooking again. That always makes me feel good, to look at photos and remember fun times our family has had together.
Thanks for your prayers. I think they seem to be working!
Emilee
Sunday, December 7, 2008
Sunday December 7th
The Christmas spirit has arrived at our house this weekend! We have all of our decorations up, we have my parents staying with us, we are having a family dinner tonight and we went to the Festival of Trees yesterday. So far I've been blessed with mild symptoms from the chemotherapy that I had on Wednesday. I was able to take my medicine and go with my family up to Sandy to see the movie Bolt. It was really cute! Then we went to the Sandy Expo Center to see the Festival of Trees. The whole huge building was full with uniquely decorated and themed Christmas trees, as well as a gingerbread village, several aisles of wreaths and centerpieces and other donated items, like children's play cottages and a playset. Everything at the festival is donated and then people go to purchase the items with all of the funds going to Primary Children's Medical Center. On each end of the building they had live entertainment; on one side was also a kids' fun center and the other had a gift boutique. Fortunately the boys and David were able to push me in the wheelchair the whole time so I didn't get too worn out. As it was, after dinner I pretty much had to go up to my room and rest and go to sleep early.
I'm planning to attend Sacrament meeting today. I'm resting right now, then I'll get up right before church and put on my clothes, so I'll have enough energy to go. This morning my throat has been hurting and I have had some nausea and fatigue, but I am staying on top of my symptoms. My friend Rebecca asked me to tell about controlling the symptoms of chemo, since she has a friend who has to get treated. Each drug I have tried has different side effects, some right away, some more than others, etc. My last drug used to make me feel sick to my stomach the day I got it. A friend told me to bring ginger ale and saltines to munch on during the treatment. I use Sprite or soda at home when my stomach hurts, which is usually several days after my treatment. The Dr. prescribes an infusion of anti-nausea medicine on the day I get my treatment, so that helps me out at the beginning. Then, I try to take my anti-nausea medicines on a schedule, otherwise I can get feeling really sick while I wait for a pill to work. For my mouth sores and sore throat I got a prescription for "magic mouthwash" which has benedryl and mylanta and lidocaine in it. For cold sores, I use Neosporin lip treatment. For aches and pains, I have a prescription for pain medicine, but have also used Advil for muscle aches. I guess the worst side effects (other than hair loss) are just nausea and fatigue. When I don't feel like eating, a smoothie is my favorite drink, also yogurt or ice cream. I like mashed potatoes and other creamy soups that are easy to get down. Thank goodness the anti-nausea drugs make you sleepy, so then you can go to sleep and wake up feeling better.
So, since my blog is my gratitude journal, I will say that I am grateful that I am not terribly sick so far, even with an increase in my dosage of the chemo pill, Xeloda. I am grateful that my mom is staying to help take care of me and my family. It provides me with peace of mind to know that my only responsibility is to rest and get better. David is taking care of the financial needs of our family and is able to focus on his work instead of taking care of the children. I've been reading the book "When you can't do it alone, take the Savior's hand." I also enjoyed reading some of the conference talks from October. They help me build my faith and calm my fear.
Emilee
I'm planning to attend Sacrament meeting today. I'm resting right now, then I'll get up right before church and put on my clothes, so I'll have enough energy to go. This morning my throat has been hurting and I have had some nausea and fatigue, but I am staying on top of my symptoms. My friend Rebecca asked me to tell about controlling the symptoms of chemo, since she has a friend who has to get treated. Each drug I have tried has different side effects, some right away, some more than others, etc. My last drug used to make me feel sick to my stomach the day I got it. A friend told me to bring ginger ale and saltines to munch on during the treatment. I use Sprite or soda at home when my stomach hurts, which is usually several days after my treatment. The Dr. prescribes an infusion of anti-nausea medicine on the day I get my treatment, so that helps me out at the beginning. Then, I try to take my anti-nausea medicines on a schedule, otherwise I can get feeling really sick while I wait for a pill to work. For my mouth sores and sore throat I got a prescription for "magic mouthwash" which has benedryl and mylanta and lidocaine in it. For cold sores, I use Neosporin lip treatment. For aches and pains, I have a prescription for pain medicine, but have also used Advil for muscle aches. I guess the worst side effects (other than hair loss) are just nausea and fatigue. When I don't feel like eating, a smoothie is my favorite drink, also yogurt or ice cream. I like mashed potatoes and other creamy soups that are easy to get down. Thank goodness the anti-nausea drugs make you sleepy, so then you can go to sleep and wake up feeling better.
So, since my blog is my gratitude journal, I will say that I am grateful that I am not terribly sick so far, even with an increase in my dosage of the chemo pill, Xeloda. I am grateful that my mom is staying to help take care of me and my family. It provides me with peace of mind to know that my only responsibility is to rest and get better. David is taking care of the financial needs of our family and is able to focus on his work instead of taking care of the children. I've been reading the book "When you can't do it alone, take the Savior's hand." I also enjoyed reading some of the conference talks from October. They help me build my faith and calm my fear.
Emilee
Friday, December 5, 2008
Friday December 5th
Happy Birthday to my dad today. I'll get to hug him in person when he arrives tomorrow. So far, I've been feeling pretty well since my treatment on Wednesday. I just have some fatigue and nausea. My medicine makes me sleepy, so sometimes I'll sit down to read and find myself dozing off. My Relief Society president drove me to the pain management Dr. yesterday and that was helpful, to be able to regulate my medication.
Today I felt about the same. In the morning, the Stake Relief Society presidency came by to help me decorate our house for Christmas. My kids had already put up the tree and hung the ornaments the night before, so the ladies hung garlands and wreaths and set up my nativity and other decorations. They even brought music and chocolate. Marlene Black, the president, brought me a pan of cake and a pan of cornbread and returned later in the afternoon with a pot of stew for our dinner. In addition, today we recieved the proceeds of a fundraiser held at Lincoln Academy in my honor. Mrs. Parker brought over the many coins and bills that people donated and it touched my heart to be remembered in this way. I will now be able to pay off the oncologist's bill that has been gathering interest all year long. It is a blessing when I don't have to worry about finances, in addition to the stress of my illness.
Just like my last post, I feel much gratitude in my heart and I also am starting to feel more hope and less fear. I know that I'll be feeling worse over the next week or so, but I believe I can tolerate my side effects better when I have a happier outlook and a lot of encouragement from my support system, those nearby and those farther away. In addition, our family watched the new dramatization of President Hinckley's life, over the past 2 evenings. Our neighbors lent us the movie and it brought a good spirit into our home.
May you also have the blessings of the Holy Spirit in your home, during this season of Christmas.
Emilee
Today I felt about the same. In the morning, the Stake Relief Society presidency came by to help me decorate our house for Christmas. My kids had already put up the tree and hung the ornaments the night before, so the ladies hung garlands and wreaths and set up my nativity and other decorations. They even brought music and chocolate. Marlene Black, the president, brought me a pan of cake and a pan of cornbread and returned later in the afternoon with a pot of stew for our dinner. In addition, today we recieved the proceeds of a fundraiser held at Lincoln Academy in my honor. Mrs. Parker brought over the many coins and bills that people donated and it touched my heart to be remembered in this way. I will now be able to pay off the oncologist's bill that has been gathering interest all year long. It is a blessing when I don't have to worry about finances, in addition to the stress of my illness.
Just like my last post, I feel much gratitude in my heart and I also am starting to feel more hope and less fear. I know that I'll be feeling worse over the next week or so, but I believe I can tolerate my side effects better when I have a happier outlook and a lot of encouragement from my support system, those nearby and those farther away. In addition, our family watched the new dramatization of President Hinckley's life, over the past 2 evenings. Our neighbors lent us the movie and it brought a good spirit into our home.
May you also have the blessings of the Holy Spirit in your home, during this season of Christmas.
Emilee
Wednesday, December 3, 2008
Wednesday December 3rd
Today I am grateful that I was able to attend Brenton's choir concert last night and Jonny's band concert tonight. I was proud to see them on stage and they did a great job and are growing into such talented teen agers. Another miracle occured yesterday when I realized we were almost out of toilet paper and my cousin Chrissie asked if she could pick something up from Costo while she was there. How did she know to call me when she did? She even helped me get some more new school pants for Nathan, since he recently outgrew the ones he had. Elaine took me to Salt Lake for my treatment today. When we were almost there, the office called to say that they were waiting for the medication to be delivered via Fed Ex and I should come an hour later. To pass the time, I had Elaine drive up past some of the homes in the avenues and the Federal Heights area. Elaine sat with me the whole 4 hours while the chemo drug dripped through my port, even though I fell asleep and had a nap for half the time. She was cheerful and talkative and I feel so grateful to have her as my mother-in-law. She treats me so well.
Tomorrow I have an appointment with the pain Dr. and I only had to call 2 people before I found one willing to drive me. I found out yesterday that the school (Lincoln Academy where I worked part time last year) has been having a fund raiser to earn money to help with my deductibles and out of pocket medical expenses. I feel that even though I have tremendous challenges, the Lord is sending people to help lighten my burden, even through my Dad's encouraging posts and the post from Amadee which reminded me of Viktor Frankl's book that I have read some of and need to get back to reading the rest. Even today, as our neighbor brought a delicious dinner for our family, she also lent us that brand new dvd which is a dramatization of Gordon B. Hinckley's life. Before we watched the video, the boys brought up the Christmas tree and we set it up and put the lights on. This is because several ladies in the Relief Society are coming on Friday to help me with my Christmas decorating. Watching 30 minutes about President Hinckley was a spiritual way to end our day, so I am feeling very grateful right now. I'm feeling more positive about the future and I feel the effects of so many prayers of loved ones around me.
Today I thank the Lord that I have so many friends and family members who love and support me and help buoy my spirits when am frustrated or down. Number one is my husband who gets up and helps the children get ready each day for school so I can sleep in. He calls me often to make sure I'm doing all right and he likes to talk to me about his work and some of the successes that he has there. He helps encourage the boys to do more chores so they can learn to do much of the housework. He also takes the boys on outings and encourages them in their advancement in the boy scout program. I feel like my illness has really given David a chance to shine in our family, as I used to do a lot of the things for the children that David is learning to do. David even helps me in and out of the car each time we go out together, so I hope he passes that politeness down to our boys.
Well, I think I've done enough reminiscing tonight. Until next time...
Emilee
Tomorrow I have an appointment with the pain Dr. and I only had to call 2 people before I found one willing to drive me. I found out yesterday that the school (Lincoln Academy where I worked part time last year) has been having a fund raiser to earn money to help with my deductibles and out of pocket medical expenses. I feel that even though I have tremendous challenges, the Lord is sending people to help lighten my burden, even through my Dad's encouraging posts and the post from Amadee which reminded me of Viktor Frankl's book that I have read some of and need to get back to reading the rest. Even today, as our neighbor brought a delicious dinner for our family, she also lent us that brand new dvd which is a dramatization of Gordon B. Hinckley's life. Before we watched the video, the boys brought up the Christmas tree and we set it up and put the lights on. This is because several ladies in the Relief Society are coming on Friday to help me with my Christmas decorating. Watching 30 minutes about President Hinckley was a spiritual way to end our day, so I am feeling very grateful right now. I'm feeling more positive about the future and I feel the effects of so many prayers of loved ones around me.
Today I thank the Lord that I have so many friends and family members who love and support me and help buoy my spirits when am frustrated or down. Number one is my husband who gets up and helps the children get ready each day for school so I can sleep in. He calls me often to make sure I'm doing all right and he likes to talk to me about his work and some of the successes that he has there. He helps encourage the boys to do more chores so they can learn to do much of the housework. He also takes the boys on outings and encourages them in their advancement in the boy scout program. I feel like my illness has really given David a chance to shine in our family, as I used to do a lot of the things for the children that David is learning to do. David even helps me in and out of the car each time we go out together, so I hope he passes that politeness down to our boys.
Well, I think I've done enough reminiscing tonight. Until next time...
Emilee
Monday, December 1, 2008
Monday December 1st
Well, we're back from St. George and doing the regular routine again. The boys especially enjoyed biking and swimming each of the days on our trip, as the weather was perfect in the 60s. We also went to a movie, drove up to the airport on the bluff to see a view of the city, we drove past the temple where it was all lit up for Christmas, we had a special restaurant dinner and we went to see a neat display of real dinosaur tracks that had been discovered only 9 years ago by a farmer in St. George. David cooked the rest of our meals in the trailer and he and the boys took care of everything so I could just rest while they were out. I took part on the driving parts of the trip, but couldn't do the biking or swimming, so at least I had a book to read and a comfortable trailer to rest in.
We got home safely last night and the boys had a good day at school today. I can't believe that Brenton's choir concert is tomorrow night and Jonny's band concert is the day after. Since it is December already, I'll have to enlist some help in getting my holiday decorations up. I'm trying to think of positive things and not worry too much about being sick for the next 2 weeks. I am glad that my mom will be able to come again and take over the household, so I don't need to worry about watching over the kids and making meals, etc. Last time I tolerated the treatment fairly well, meaning I didn't need to get a blood transfusion or take antibiotics for an infection. The Dr. is upping the dosage of the oral pill, so I don't know how this will affect me, but I sure wish the medicine could make me better instead of just keeping my situation the same. I don't think I can go on like this indefinitely, meaning all of the ups and downs of treatment, etc.
Jennie came again today to help me. She always gets me lunch and leaves a dinner for family as well. Today it was lasagna and the children said it was the best lasagna they had ever eaten. Nathan said, "Now I know why Garfield likes to eat lasagna so much!" My children are big fans of Aunt Jennie and Uncle Ryan. Between the 2 of them they can come over and cook anything and fix up your house at the same time!
I know that Heavenly father wants me to learn to ask for and accept help from others. I hope I am learning that lesson well, because I'd like to be done with with this trial, if possible. Otherwise, I'll provide plenty of opportunities for people to serve our family and I know they will be blessed for their efforts as well.
Emilee
We got home safely last night and the boys had a good day at school today. I can't believe that Brenton's choir concert is tomorrow night and Jonny's band concert is the day after. Since it is December already, I'll have to enlist some help in getting my holiday decorations up. I'm trying to think of positive things and not worry too much about being sick for the next 2 weeks. I am glad that my mom will be able to come again and take over the household, so I don't need to worry about watching over the kids and making meals, etc. Last time I tolerated the treatment fairly well, meaning I didn't need to get a blood transfusion or take antibiotics for an infection. The Dr. is upping the dosage of the oral pill, so I don't know how this will affect me, but I sure wish the medicine could make me better instead of just keeping my situation the same. I don't think I can go on like this indefinitely, meaning all of the ups and downs of treatment, etc.
Jennie came again today to help me. She always gets me lunch and leaves a dinner for family as well. Today it was lasagna and the children said it was the best lasagna they had ever eaten. Nathan said, "Now I know why Garfield likes to eat lasagna so much!" My children are big fans of Aunt Jennie and Uncle Ryan. Between the 2 of them they can come over and cook anything and fix up your house at the same time!
I know that Heavenly father wants me to learn to ask for and accept help from others. I hope I am learning that lesson well, because I'd like to be done with with this trial, if possible. Otherwise, I'll provide plenty of opportunities for people to serve our family and I know they will be blessed for their efforts as well.
Emilee
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