What a wacky, hair-loss Halloween!!
My day started out fine, then seemed to get worse as the afternoon and evening went on! I felt well in the morning, but got some nausea around 11 AM. That was ok, since my new friend Shirline invited me over to her house to watch a movie. She fed me delicious orange julius, popcorn and even some soup. I still felt ok, and I really enjoyed watching the movie Enchanted, which was really cute. She took me to the store to get some Halloween candy for me to give out tonight. I got pretty tired at the store, so I had to rest after the kids got home. Actually, just the two older boys were here. They wanted to watch a movie, so I tried to convince them to do some chores before starting it, but one of them wanted to be lazy, I guess.
David got home around 4 PM and had just gotten a haircut. He convinced me that his hair stylist would give me a mohawk for free, since my hair is falling out anyway. I'm glad she buzzed the sides of my hair, but when we went to put green color gel on the spiky part, more hair started to pull out again. David took a photo, too, so I must post it up on this blog so you can see me Halloween 4 hour hairdo! I got to show it off to a few people and some kids in the neighborhood.
I don't know if it was the holiday or the candy or both, but my kids were really wild today. They all wanted to do different activities and were trying to decide when to trick or treat and who to go out with. Brenton was planning to attend one friend's party, but when that fell through he had to find someone else's party to crash. Fortunately he found one and a trusted mom was the driver to and from, so I let him go. Jonny has been acting really weird lately, so we found a few things he has been up to on the sly. Goodness, you sure have to be vigilant as a parent, as the kids always seem to be one step ahead of you!
Between the kids and my hair, I had a good cry tonight and now I'm feeling better. I have a soft knit cap that I got last year from the donation box at the cancer center. Maybe I'll pick out a few more, now that I have bald spots all over, so the caps can keep my head warm and comfortable. At least I already have a wig to wear, so I'll survive. Also, I know I have friends who have also gone through the hair loss, so that makes it easier to bear. I think I'll spend tomorrow wrapped in a warm blanket with a good book. I even have some treats to eat while I'm there.
Emilee
Friday, October 31, 2008
Thursday, October 30, 2008
Thursday October 30th
I got to go out to lunch with friends today, for the first time in weeks. I may also get to go out tomorrow to visit my new friend Shirline, assuming my health cooperates. Speaking of which, the children were both surprised and awed when I told them at dinner that my hair is starting to come out. For now, it is staying on my head, but as soon as you pull on a piece of it, it comes out in your hand. I thought the boys might be interested turning my hair into a weird Halloween type hairdo, right in time for the holiday tomorrow. Imagine tomorrow night when I open the door and the trick or treaters aren't sure if I have a wig or real hair. Brenton seemed worried about the idea, but Jonny was all for it.
As expected, I am feeling a little better each day during this week off from treatment. It is a joy to feel somewhat normal again, though I still have some fatigue and nausea. Happy Halloween everyone! Come by my house if you want to see my half-bald head. It might be the only time I show it off before I start wearing my wig full time again.
Emilee
As expected, I am feeling a little better each day during this week off from treatment. It is a joy to feel somewhat normal again, though I still have some fatigue and nausea. Happy Halloween everyone! Come by my house if you want to see my half-bald head. It might be the only time I show it off before I start wearing my wig full time again.
Emilee
Wednesday, October 29, 2008
P.S.
I almost forgot to offer "tk" my email address, so they can contact me. It is emileeellis@comcast.net. Hope to hear from you soon. Emilee
Wednesday October 29th
Today I am looking for "tk", the person who posted a comment to my Saturday entry, who has a standby ticket for Jet Blue. This afternoon, my brother-in-law offered me a buddy pass on Jet Blue, that must be used by this weekend, so I thought that between the two of you, it might be cover the cost of one round trip. I might feel well enough to go somewhere for a weekend, or I might be able to fly a family member out here to visit and help with the kids.
Today is my first day without Xeloda in 2 weeks. I can already tell that a lot of my nausea is gone. I have been getting a lot of visitors lately, so this morning I had my next door neighbor, Christi, who helped in the kitchen plus another neighbor, Suzanne, who brought me a wealth of scrapbooking supplies. That made me excited about scrapbooking again. Then, this afternoon, Elaine came to help with the boys after school. They did some chores and a bit of homework and now they are at Target, looking for a few "accessories" to their Halloween costumes, as Brenton and Jonny still are going to dress up for school on Friday, even though I won't allow Brenton to go trick or treating.
David is going through some changes at his work. Security National is shutting down the Reverse Mortgage division, but David will continue doing loans through another division of the same company. The market has been up and down with interest rates, but David seems to be holding on to some loans that should be going through soon. I don't like the uncertainty of his job right now, but we are blessed that he has a place to work.
Emilee
Today is my first day without Xeloda in 2 weeks. I can already tell that a lot of my nausea is gone. I have been getting a lot of visitors lately, so this morning I had my next door neighbor, Christi, who helped in the kitchen plus another neighbor, Suzanne, who brought me a wealth of scrapbooking supplies. That made me excited about scrapbooking again. Then, this afternoon, Elaine came to help with the boys after school. They did some chores and a bit of homework and now they are at Target, looking for a few "accessories" to their Halloween costumes, as Brenton and Jonny still are going to dress up for school on Friday, even though I won't allow Brenton to go trick or treating.
David is going through some changes at his work. Security National is shutting down the Reverse Mortgage division, but David will continue doing loans through another division of the same company. The market has been up and down with interest rates, but David seems to be holding on to some loans that should be going through soon. I don't like the uncertainty of his job right now, but we are blessed that he has a place to work.
Emilee
Tuesday, October 28, 2008
Monday October 28th
Today was busy, and I think I overdid it, as I felt sick this afternoon and evening. I enjoyed making a new friend this morning, who is also a breast cancer survivor. The biggest headache today came from the man who came to fix the crack in my countertop. Because he was there, I didn't get much rest, plus he left our kitchen (2 hours later) full of dust all over the floor, table, cupboards and appliances. I was able to get help from two Relief Society sisters, so my kitchen was clean when the boys got home.
It always keeps me busy to have the kids home from school, as I help them with various things. Jonny's friend came over in need of some more props for his "nerd" costume. I made some homemade bread using the breadmaker and also made some dinner for the kids, so by then, I think I was pretty worn out. I also supervised Nathan in his homework and encouraged the other boys to finish their chores. I'm looking forward to having Elaine over tomorrow afternoon to help when the boys get home from school.
Tonight they had a Halloween carnival at the church for the primary kids, and the young men and women were helping run the games. Nathan wore his jaguar costume and David took him over to church. Brenton and Jonny are still over there helping. The Relief Society wants me to list a few other things that they could help with. One is to organize the bookcases in my bedroom. The other is to sort through my prescriptions so I can apply to a cancer care program which can reimburse my prescription co-pays. Once those are done, I'll list a few more things, but that's all for now.
Emilee
P.S. I'd like to get to know Christi, my next door neighbor, so I want to have her over to chat this week.
It always keeps me busy to have the kids home from school, as I help them with various things. Jonny's friend came over in need of some more props for his "nerd" costume. I made some homemade bread using the breadmaker and also made some dinner for the kids, so by then, I think I was pretty worn out. I also supervised Nathan in his homework and encouraged the other boys to finish their chores. I'm looking forward to having Elaine over tomorrow afternoon to help when the boys get home from school.
Tonight they had a Halloween carnival at the church for the primary kids, and the young men and women were helping run the games. Nathan wore his jaguar costume and David took him over to church. Brenton and Jonny are still over there helping. The Relief Society wants me to list a few other things that they could help with. One is to organize the bookcases in my bedroom. The other is to sort through my prescriptions so I can apply to a cancer care program which can reimburse my prescription co-pays. Once those are done, I'll list a few more things, but that's all for now.
Emilee
P.S. I'd like to get to know Christi, my next door neighbor, so I want to have her over to chat this week.
Monday, October 27, 2008
Monday October 27th
It has been fun to receive messages and phone calls in response to Sunday's article. It looks like the paper is running new stories each day about different breast cancer patients, so I don't think I'll get any more coverage. I could ask Ashley, though. I like Susan's idea of having "breast buddies." Up until now, I haven't even attended a support group, though I have been to see the counselor at the clinic. Now that I have a new oncologist, I'll have to find out more of the programs they have in Salt Lake.
Basically, up until now, I was too busy living my life and working and juggling my family responsibilities and telling myself that I could do everything if I just tried hard enough. The time has come, because of the dangerous liver tumors and because of the severity of the chemo drugs, that I need to let others take care of the business around me. I need to concentrate on myself and on making it through each day.
Today, my sister in law, Jennie, came to help. She drove me to the lab for a blood test. I wanted to find out if I need a blood transfusion, as I've been feeling short of breath. She also took me to the store, where I rode the cart around and got some groceries. When we got home, I got a call from Dr. Shehadeh. I like the fact that he calls me himself, instead of having his staff do it every time. He said that I don't need a transfusion at this time. He said he wants me to have one more 3 week cycle of the Ixempra/Xeloda before I get a scan to see the results. He asked about my pain level and I told him it has been getting better, then he told me "Happy Halloween!" He must be pretty Americanized by now to be getting in the spirit of this American holiday.
Tomorrow is my last day of taking Xeloda. I am glad to be feeling better and to be up and around more. Sometimes, little things don't get done unless I am there to mind them. For example, in my pile of clean laundry were two badly stained white shirts of Nathan's. They had gone through the washer and the dryer and the stains were pretty set. When I asked David about it, he said he didn't have any bleach. Well, I walked out in the garage and came back with a gallon of it in my hand. "Oh," was his reaction. I guess it is mostly moms who worry about these things, like having their child wear a clean-looking shirt to school. (My kids wear uniforms to their charter school, so Nathan can only wear a navy or white shirt each day.)
I feel grateful for even more offers of help with the children, a friend to visit with, a flight for a caregiver, and more support because of the publicity of the news article. Every one of those helpers is a hero in my eyes, because they are literally coming to my rescue when I cannot do everything myself. Thank you today to all you heroes out there!
Emilee
Basically, up until now, I was too busy living my life and working and juggling my family responsibilities and telling myself that I could do everything if I just tried hard enough. The time has come, because of the dangerous liver tumors and because of the severity of the chemo drugs, that I need to let others take care of the business around me. I need to concentrate on myself and on making it through each day.
Today, my sister in law, Jennie, came to help. She drove me to the lab for a blood test. I wanted to find out if I need a blood transfusion, as I've been feeling short of breath. She also took me to the store, where I rode the cart around and got some groceries. When we got home, I got a call from Dr. Shehadeh. I like the fact that he calls me himself, instead of having his staff do it every time. He said that I don't need a transfusion at this time. He said he wants me to have one more 3 week cycle of the Ixempra/Xeloda before I get a scan to see the results. He asked about my pain level and I told him it has been getting better, then he told me "Happy Halloween!" He must be pretty Americanized by now to be getting in the spirit of this American holiday.
Tomorrow is my last day of taking Xeloda. I am glad to be feeling better and to be up and around more. Sometimes, little things don't get done unless I am there to mind them. For example, in my pile of clean laundry were two badly stained white shirts of Nathan's. They had gone through the washer and the dryer and the stains were pretty set. When I asked David about it, he said he didn't have any bleach. Well, I walked out in the garage and came back with a gallon of it in my hand. "Oh," was his reaction. I guess it is mostly moms who worry about these things, like having their child wear a clean-looking shirt to school. (My kids wear uniforms to their charter school, so Nathan can only wear a navy or white shirt each day.)
I feel grateful for even more offers of help with the children, a friend to visit with, a flight for a caregiver, and more support because of the publicity of the news article. Every one of those helpers is a hero in my eyes, because they are literally coming to my rescue when I cannot do everything myself. Thank you today to all you heroes out there!
Emilee
Sunday, October 26, 2008
Sunday October 26th
Our family was excited this morning to see our article on the front page of our local Utah County paper. Nathan, especially, was thrilled that his photo was also on the front, and again several pages back. Here is the link to Daily Herald article: http://www.heraldextra.com/breastcancer/
There are several links on the website that connect to a letter and a recording that I made. We expect another smaller article each day for the next couple of days, as the paper continues to cover this topic.
I felt very grateful to be able to attend sacrament meeting this afternoon. I have been feeling tired, probably because of the low red blood cell count. Fortunately I rested right before church and my stomach didn't hurt, so I got to attend. It felt good to get out, if only for an hour and a half.
It is fun to see how excited the children are for Halloween. Tonight we talked about their ideas for costumes and for the activities Friday night. We also played a family game and ate ice cream, just like the photo in the newspaper. The kids ran around with the dog in the back yard for a while. David got out his big ladder and was able to retrieve over ten different balls and dog toys that have been stuck on the roof for the past year.
I'm expecting a better week, since my "week off" from treatment begins on Wednesday!
Emilee
There are several links on the website that connect to a letter and a recording that I made. We expect another smaller article each day for the next couple of days, as the paper continues to cover this topic.
I felt very grateful to be able to attend sacrament meeting this afternoon. I have been feeling tired, probably because of the low red blood cell count. Fortunately I rested right before church and my stomach didn't hurt, so I got to attend. It felt good to get out, if only for an hour and a half.
It is fun to see how excited the children are for Halloween. Tonight we talked about their ideas for costumes and for the activities Friday night. We also played a family game and ate ice cream, just like the photo in the newspaper. The kids ran around with the dog in the back yard for a while. David got out his big ladder and was able to retrieve over ten different balls and dog toys that have been stuck on the roof for the past year.
I'm expecting a better week, since my "week off" from treatment begins on Wednesday!
Emilee
Saturday, October 25, 2008
Saturday October 25th
Halloween is at hand! Today was a relaxing family day, which we ended by carving a jack-o-lantern and David sleeping in the trailer (in our front yard) with Nathan. In between, I managed to get up and around. David's uncle and his family came for a visit. My brother Dave took Nathan for a bike ride. I played a game with David and Jonny. I put together a couple of leftovers to make a stew for dinner.
As my nausea and mouth sores improve, I have noticed a few new side effects: my red blood count is low, so my face and lips look a bit pale. This makes me short of breath whenever I stand up and move around a lot. Also, my hands and feet are getting a bit sore, a side effect of the chemo which damages the tiny nerve endings in hands and feet. But overall, I can't complain, as I felt better today than I have been in a week and a half.
I'm looking forward to reading my article in the Daily Herald tomorrow. If anyone nearby has a copy, could you drop it off on our porch? Ashley said she would bring me by some more copies and some photos on Monday. I am going to try hard to attend at least part of Sacrament meeting tomorrow. I've missed going to church.
Emilee
As my nausea and mouth sores improve, I have noticed a few new side effects: my red blood count is low, so my face and lips look a bit pale. This makes me short of breath whenever I stand up and move around a lot. Also, my hands and feet are getting a bit sore, a side effect of the chemo which damages the tiny nerve endings in hands and feet. But overall, I can't complain, as I felt better today than I have been in a week and a half.
I'm looking forward to reading my article in the Daily Herald tomorrow. If anyone nearby has a copy, could you drop it off on our porch? Ashley said she would bring me by some more copies and some photos on Monday. I am going to try hard to attend at least part of Sacrament meeting tomorrow. I've missed going to church.
Emilee
Friday, October 24, 2008
Friday October 24th
Today I was really touched by the comments, specifically the song and the scripture, from Laurie and Becky. Sometimes I wonder why we have to suffer such trials, but often I believe that we learn compassion for others, empathy, humility, faith and many other good qualities that help prepare us to live with God again. I certainly don't feel like an inspiration to anybody, as we are all doing our best to deal with the challenges we have in life. I do feel much gratitude:
Today I am grateful that my body continues to improve, and my nausea and pain and swelling decrease. I am grateful that my children are playing at their friends' houses. I am grateful that my husband's job is bringing in some income, enough to meet our basic needs. I am grateful for the beautiful weather, even if I have to enjoy it from my window. I am grateful for many more things, and I could go on, but that list is enough for today.
Emilee
Today I am grateful that my body continues to improve, and my nausea and pain and swelling decrease. I am grateful that my children are playing at their friends' houses. I am grateful that my husband's job is bringing in some income, enough to meet our basic needs. I am grateful for the beautiful weather, even if I have to enjoy it from my window. I am grateful for many more things, and I could go on, but that list is enough for today.
Emilee
Thursday, October 23, 2008
Thursday October 23rd
Today I noticed an improvement in several areas. My nausea and pain has been getting better. Also, the swelling around my liver is going down. Elaine took me to the pain doctor this morning. My thinking has become less clear and sometimes my mind is fuzzy. I had a hard time explaining to the Dr. about my medications and I was glad that Elaine was there to take notes for me. As a result, I am going to try to lower my dose, as I need all of my thinking capacity to speak and make decisions!
After picking up my prescriptions, Elaine brought me home and the photographer from the Daily Herald came over. She wanted to record my voice telling my story and my experiences. She said that the newspaper article will have a link to the internet, where people can click and listen to several breast cancer patients. I am glad Ashley told me that my words could be edited, so I didn't worry as much about making a mistake or having a pause, etc.
When the kids got home, I was able to greet them and talk to them before I went up and took a nap. I have been using a little of my magic mouthwash before eating, so that the food doesn't make my mouth sore. Due to the meals that were brought this week as well as groceries, our refrigerator is full! Also, my chocolate is in good supply. Jennie suggested I start making a "wish list" so I can update it as well as tell which wishes have been "fulfilled." Many of my small requests have been granted. Today, the only thing I might like is some more movies that I can watch when I am up in my room. We have a digital cable box, but it is down in the family room, so I just get the cable in our bedroom. After enjoying the dvr feature on our cable box, I almost hate to watch live tv anymore and have to wait through the commercials!
Thank you to Jennie for the cute photos of Nathan and Trent. Nathan commented that Trent lost his tooth over the weekend. Also Nathan said that the pumpkin in his photo was too heavy, so he actually chose a lighter one to take home and keep. Can you believe that Halloween is only a week away? Wow!
Emilee
After picking up my prescriptions, Elaine brought me home and the photographer from the Daily Herald came over. She wanted to record my voice telling my story and my experiences. She said that the newspaper article will have a link to the internet, where people can click and listen to several breast cancer patients. I am glad Ashley told me that my words could be edited, so I didn't worry as much about making a mistake or having a pause, etc.
When the kids got home, I was able to greet them and talk to them before I went up and took a nap. I have been using a little of my magic mouthwash before eating, so that the food doesn't make my mouth sore. Due to the meals that were brought this week as well as groceries, our refrigerator is full! Also, my chocolate is in good supply. Jennie suggested I start making a "wish list" so I can update it as well as tell which wishes have been "fulfilled." Many of my small requests have been granted. Today, the only thing I might like is some more movies that I can watch when I am up in my room. We have a digital cable box, but it is down in the family room, so I just get the cable in our bedroom. After enjoying the dvr feature on our cable box, I almost hate to watch live tv anymore and have to wait through the commercials!
Thank you to Jennie for the cute photos of Nathan and Trent. Nathan commented that Trent lost his tooth over the weekend. Also Nathan said that the pumpkin in his photo was too heavy, so he actually chose a lighter one to take home and keep. Can you believe that Halloween is only a week away? Wow!
Emilee
Nathan at the Pumpkin Patch
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Nathan went with his cousin Trent to the Pumpkin Patch over UEA weekend. Jennie took over the blog for a minute to post the picture and surpise Emilee. Hope she doesn't mind!
Wednesday, October 22, 2008
Wednesday October 22nd
I've been feeling emotional today, though I'm not so sure why it is today and not any other day. It is hard to feel encapsulated in my house, so out of touch with the real world. I was able to get out for a short bit this afternoon. Elaine drove me to lab to get my blood tested. Basically the counts were a little down, as expected, but nothing to worry about. Elaine then took my 3 boys down to the dentist for exams. I was happy to hear that none of them had cavities and so it was just a routine checkup.
David has been feeling sick lately. He went to a Dr. on Monday and got some prescriptions. The Dr. told him that if he wasn't better in 2 days, he should take the antibiotic, so David is doing that. Sometimes having him work from home brings me more stress, even though he is there to help the boys or do something for me, should I need it. He tells me that sometimes home is better because the office is distracting. David has an appointment tonight, and he tells me that even though rates went up for a week, they are back down again so he can do some refinances for people.
Despite my worries and fears, I am grateful for the gospel of Christ which helps me have faith and hope. When I am sad or feeling sick, I can pray for comfort. Sometimes my prayers are answered by people here on earth who bring me groceries, pick up my prescription, make dinners for my family and have my children over. Right now, what I need the most is for a friend or two to invite my children over after school or in the evening. I desperately want them to go somewhere and have fun and not have to worry about me all the time. I also want them to be well-supervised, so I can relax and know they are in good hands.
Emilee
David has been feeling sick lately. He went to a Dr. on Monday and got some prescriptions. The Dr. told him that if he wasn't better in 2 days, he should take the antibiotic, so David is doing that. Sometimes having him work from home brings me more stress, even though he is there to help the boys or do something for me, should I need it. He tells me that sometimes home is better because the office is distracting. David has an appointment tonight, and he tells me that even though rates went up for a week, they are back down again so he can do some refinances for people.
Despite my worries and fears, I am grateful for the gospel of Christ which helps me have faith and hope. When I am sad or feeling sick, I can pray for comfort. Sometimes my prayers are answered by people here on earth who bring me groceries, pick up my prescription, make dinners for my family and have my children over. Right now, what I need the most is for a friend or two to invite my children over after school or in the evening. I desperately want them to go somewhere and have fun and not have to worry about me all the time. I also want them to be well-supervised, so I can relax and know they are in good hands.
Emilee
Tuesday, October 21, 2008
Tuesday October 21st
I started out my day fairly hopeful, with my crackers and pills routine. I had a pretty good morning, then a worse afternoon. I felt so sick that I needed to lie down in my bed and not move or talk just in order to avoid throwing up (yes, I do have a container by my bed.) In some ways it was nice that the kids were at school and I got to rest or watch tv. The nausea, however, is tricky because when I am lying down, watching Lifetime movies from my dvr (and the dvd North and South, thanks Laurie!) I feel pretty well, so I get up and move my legs around, get some snacks, feed the dog, etc. The longer I stay up, the worse I feel and so it is back to bed, waiting for the anti-nausea drug to kick in.
It is hard not to get discouraged. I want to hope for a better life, but there are many things I miss doing that make me wonder if I will ever get to do them or enjoy them again. My whole world revolves around staying at home and going to visit doctors. I have one more week of the Xeloda to take (one tablet in the morning, one at night) and then I'll get a week off. Perhaps by then, my nausea will pass, but I feel that I have always been getting sicker and sicker and I don't know that anything else will be able to prevent the progression of my disease at this point.
It will be interesting to read about myself in the Daily Herald this Sunday. The are doing a series of articles about Breast Cancer and they will present my profile. I will be interested to know how the public will react to my situation as I'm including my blog address in the article. I like to read and it is fun to get comments from all of you, even some that I don't know as well as others. It is also a unique situation to be served by everyone, so much that I can barely care for my own needs, let alone those of my children. I have a friend doing my shopping tomorrow. My mother-in-law is taking the boys to the dentist in the afternoon. She is also taking me to another appointment on Thursday. The Relief Society is bringing us dinner and some freezer meals. I feel ok to stay home by myself. If I were to have bad pain, for example, I know now what pills to take or I Icould call a close by friend or neighbor. Much of the stress from our household is handled by David, who struggles between the role of father, husband and income provider. He has got the first two covered, but is struggling to build more job security and more income in this slow mortgage market. I wish he didn't have to work as long and that he had more time to share with me. Bye for now,
Emilee
It is hard not to get discouraged. I want to hope for a better life, but there are many things I miss doing that make me wonder if I will ever get to do them or enjoy them again. My whole world revolves around staying at home and going to visit doctors. I have one more week of the Xeloda to take (one tablet in the morning, one at night) and then I'll get a week off. Perhaps by then, my nausea will pass, but I feel that I have always been getting sicker and sicker and I don't know that anything else will be able to prevent the progression of my disease at this point.
It will be interesting to read about myself in the Daily Herald this Sunday. The are doing a series of articles about Breast Cancer and they will present my profile. I will be interested to know how the public will react to my situation as I'm including my blog address in the article. I like to read and it is fun to get comments from all of you, even some that I don't know as well as others. It is also a unique situation to be served by everyone, so much that I can barely care for my own needs, let alone those of my children. I have a friend doing my shopping tomorrow. My mother-in-law is taking the boys to the dentist in the afternoon. She is also taking me to another appointment on Thursday. The Relief Society is bringing us dinner and some freezer meals. I feel ok to stay home by myself. If I were to have bad pain, for example, I know now what pills to take or I Icould call a close by friend or neighbor. Much of the stress from our household is handled by David, who struggles between the role of father, husband and income provider. He has got the first two covered, but is struggling to build more job security and more income in this slow mortgage market. I wish he didn't have to work as long and that he had more time to share with me. Bye for now,
Emilee
Monday, October 20, 2008
Monday October 20th
Lately my posts have become rather repetitive. I get up in the morning, take some pills, eat a few crackers then take some more pills. I did the same snack routine a couple of time and hadn't even come downstairs yet when Jennie arrived. It was nice to have her there to supervise the kids and bring Nathan home. I missed the little guy! Jennie also taught me how to add more photos to this blog, so you will notice that I chose last month's family photos for the header. The only thing I couldn't do was add a title and description onto that photo, so it has to go on the right sidebar.
I'm still taking the oral Xeloda and even though my pain is pretty under control, I am thinking that my nausea is probably from this tablet that I take once in the morning and once in the evening. Today I felt like a princess giving orders from her throne. I have a bell on my nightstand and rang it when I needed the boys to bring me something, or when I had a question for Jennie, etc.
Jennie brought me a smoothie from Jamba Juice and it was the most-enjoyed food item that I've had in the past few weeks. Not only did it taste good, but the coolness soothed my tender mouth and throat. It even had soy protein so I felt like it was nutricious. I'm going to teach my boys how to make some fruit smoothies with some fruit that we already have in our freezer. So, next time you stop by Jamba, bring along a mango smoothie and if at Sonic, I have always liked the sunshine smoothie.
I never dreamed that I could turn down so much chocolate in one day. I've had several people bring me my most favorite chocolates and I can barely get a few bitefuls of one down each day. With all of my food complaints, you would think my body would be thin by now, but I guess I'll always be chubby, that's the way it has to be.
Emilee
I'm still taking the oral Xeloda and even though my pain is pretty under control, I am thinking that my nausea is probably from this tablet that I take once in the morning and once in the evening. Today I felt like a princess giving orders from her throne. I have a bell on my nightstand and rang it when I needed the boys to bring me something, or when I had a question for Jennie, etc.
Jennie brought me a smoothie from Jamba Juice and it was the most-enjoyed food item that I've had in the past few weeks. Not only did it taste good, but the coolness soothed my tender mouth and throat. It even had soy protein so I felt like it was nutricious. I'm going to teach my boys how to make some fruit smoothies with some fruit that we already have in our freezer. So, next time you stop by Jamba, bring along a mango smoothie and if at Sonic, I have always liked the sunshine smoothie.
I never dreamed that I could turn down so much chocolate in one day. I've had several people bring me my most favorite chocolates and I can barely get a few bitefuls of one down each day. With all of my food complaints, you would think my body would be thin by now, but I guess I'll always be chubby, that's the way it has to be.
Emilee
Sunday, October 19, 2008
Sunday October 19th
Today was another family reunion Sunday, as my parents, two nieces, my Aunt and my brother came to visit. I was able to sit up and visit with them for part of the time, then I had to go back upstairs and lie down. Even though my nausea is under control if I lie down and rest, I feel sick to my stomach when I get up and move around and try to do anything. I got up this morning and put on a dress, hoping I would feel well enough to attend church, but I didn't. My stomach hurts if it is empty, but I have a hard time eating food with the sores in my mouth. Nothing seems very appetizing to me.
Since I only eat a small amount of food, I am trying to at least drink some more nutrition, through my daily supplement (Reliv, with some wheat/barley powder) and some spinach/carrot juice. I also have been taking the supplements that Melissa Ellis ordered for me, I drink another health drink called ASEA, and off and on I have some essiac tea. Applesauce, yogurt and mashed potatoes all work fine. Anything else (even the chocolate) has to be in small bites, washed down with plenty of liquid.
I was grateful that my parents took my two oldest boys to the Herriman Days festival and fishing with my brother Daniel's family. It was pretty amazing to have a quiet evening with my husband. My parents have to return to CA tomorrow. I will miss them, but they will be back here in another three weeks, probably.
Since I only eat a small amount of food, I am trying to at least drink some more nutrition, through my daily supplement (Reliv, with some wheat/barley powder) and some spinach/carrot juice. I also have been taking the supplements that Melissa Ellis ordered for me, I drink another health drink called ASEA, and off and on I have some essiac tea. Applesauce, yogurt and mashed potatoes all work fine. Anything else (even the chocolate) has to be in small bites, washed down with plenty of liquid.
I was grateful that my parents took my two oldest boys to the Herriman Days festival and fishing with my brother Daniel's family. It was pretty amazing to have a quiet evening with my husband. My parents have to return to CA tomorrow. I will miss them, but they will be back here in another three weeks, probably.
Meanwhile, I am just waiting and hoping that I will feel better. The boys are learning how to do more for themselves. Today they made waffles from scratch and I even had a few bites for breakfast. The kids have one more day of vacation from school tomorrow. Maybe they'll have time to master more cooking skills. What would you recommend for kids' recipes?
Emilee
Saturday, October 18, 2008
Saturday October 18th
My parents made it to Utah last night. They stopped by here to get the most recent news. I'm sure they went to bed easily. Jonny invited a friend over to sleep in the trailer. Now I can ask him to help me clean it and he can't complain because he used it !
Today, woke up in pain again, but was able to get it undercontrol. Having nausea from the moment I wake up is also frustrating. The pain patches are making me somewhat dizzy, but I know I can call someone if I need help. Nathan went to Jennie's house on Wed. but Jennie called to see if he would like to stay and we got an excited "yes" from Nathan.
David worked throughout the day on organizing some of his storage boxes. We had a couple of visitors and I received some European chocolate! Even though my mouth is still sore, I had a Linz truffle and enjoyed every bite. I don't feel up to writing any more tonight. I hope I can attend Sac. Mtg. tomorrow. The patch I use is making the pain less, but I also feel forgetful, so don't get offended if I don't print your name in every new post of this blog.
Emilee
Today, woke up in pain again, but was able to get it undercontrol. Having nausea from the moment I wake up is also frustrating. The pain patches are making me somewhat dizzy, but I know I can call someone if I need help. Nathan went to Jennie's house on Wed. but Jennie called to see if he would like to stay and we got an excited "yes" from Nathan.
David worked throughout the day on organizing some of his storage boxes. We had a couple of visitors and I received some European chocolate! Even though my mouth is still sore, I had a Linz truffle and enjoyed every bite. I don't feel up to writing any more tonight. I hope I can attend Sac. Mtg. tomorrow. The patch I use is making the pain less, but I also feel forgetful, so don't get offended if I don't print your name in every new post of this blog.
Emilee
Friday, October 17, 2008
Friday October 17th
I felt sick again today, but I am learning more about how to manage my pain and anti-nausea medications. I dozed off several in the day. This morning my parents came to greet me and stay all day to help me. At the same time, Ashley, the photographer, took some candid photos as my mom was showing me the gifts she brought with her: photos and drawings from my neices Lola and Ella, European chocolate (The best she could find in the grocery store!) and some books to read. Jennie came by to pick up more clothes for Nathan, so he can stay at her house the rest of the weekend. I'm glad because he always seems very happy with the Kilstroms.
During this course of chemotherapy, I have a goal to take the oral medication for the entire 2 weeks, then have a week off and it will be a total of 3 weeks for treatment and the Dr. can order a PET scan to mark my progress (if any.) The biggest challenge in meeting this goal comes from being able to take the chemo pill and keep it down. Also, to endure the side effects even if they get terrible. Tonight I went with my parents to theirs and Dave's house in Orem. Brenton and Jonny each had a friend over and Jonny wants to sleep in the trailer. Anyhow, David stayed home and made dinner for the boys and watched over them. The drive to my parents' house was fine, but as soon as I got inside, I knew I needed to throw up. Fortunately, I felt better after a while and could eat a little dinner, then we all watched a movie, Letters from Iwo Jima.
My magic mouthwash seems to help the pain and soreness in my mouth. I took a nap in the afternoon and so I am getting plenty of rest. Bye for now,
Emilee
Thursday, October 16, 2008
Thursday October 16th
Well, if you guessed that I was sick yesterday, you were right! Elaine brought me to the office in Salt Lake, where I met with the physician's assistant at 10 am and then began my treatment around 11am. Since one of the premedications is Benadryl I was able to doze a little bit, which made the treatment (4 hours) seem shorter.
I was already feeling nauseated on the way home from Salt Lake. Elaine and I stopped at the pharmacy to get me some larger pain patches and a magic mouthwash (yes, it does say this on the prescription bottle) which has some lidocaine in it and is supposed to help with the sores in my mouth. I am always amazed at how many medications exist now to combat the side effects of chemotherapy. In the evening, I took my first dose of the oral chemo drug called Xeloda. It came with a pill container to help me remember if I have taken each dose, one in the morning, one in the evening. I have been having episodes of "chemo brain" where I have difficulty remembering things and I feel somewhat scatter brained. This is a legitimate side effect! Greg came over with a pizza and played Risk with Brenton and Jonny. Jenny came to pick up Nathan. I went to bed early. It was nice to know, however, that my children were happy and entertained!
At 5:30 this morning, I woke David up and told him I needed more pain medicine. He gladly brought me some pills and another small patch. I was having so much pain in my abdomen that it hurt if I even moved or rolled over. I woke up at 8 am and was able to get up and use the bathroom without too much pain. I haven't been downstairs yet today and it is almost noon. I've been watching a movie called "In Her Shoes." Brenton brought me a little bell to ring if I need anything. Since I was feeling nauseated again, Brenton brought me up a can of lemon lime soda and a granola bar. If I feel this bad tomorrow, I am glad that my mom is on her way and can take care of me and cheer me up.
I'm a little bummed out because this is the big weekend in the fall where the children are out of school for 3 days, with a weekend in between. (Thurs- Mon.) Usually it is the ideal time to take our trailer out somewhere since the weather hasn't turned too cold yet. We've had snow or frost on the lawn several mornings, but it has always melted away for the afternoon. Instead, I'm suspecting that I'll just be stuck at home feeling sick.
I need some advice from any of you who live close by. When storing our trailer for the winter, we want to take down the front fence on the left side of our house. Then, we want to put gravel down on that spot next to the house. After we back the trailer up the lawn to that spot, we want to hang a double sized gate and put the rest of the fence up, theoretically so that we can open the gate and get the trailer out next spring. I prefer having the trailer right up next to the house, but David thinks it will be better to park next to our driveway and extend the fence around it. That might save the cost of getting the double size gate. I would rather put the trailer in the backyard, on the side that we don't use for anything right now. Since I don't know much about fences, I'm up to hearing any of your ideas.
Emilee
I was already feeling nauseated on the way home from Salt Lake. Elaine and I stopped at the pharmacy to get me some larger pain patches and a magic mouthwash (yes, it does say this on the prescription bottle) which has some lidocaine in it and is supposed to help with the sores in my mouth. I am always amazed at how many medications exist now to combat the side effects of chemotherapy. In the evening, I took my first dose of the oral chemo drug called Xeloda. It came with a pill container to help me remember if I have taken each dose, one in the morning, one in the evening. I have been having episodes of "chemo brain" where I have difficulty remembering things and I feel somewhat scatter brained. This is a legitimate side effect! Greg came over with a pizza and played Risk with Brenton and Jonny. Jenny came to pick up Nathan. I went to bed early. It was nice to know, however, that my children were happy and entertained!
At 5:30 this morning, I woke David up and told him I needed more pain medicine. He gladly brought me some pills and another small patch. I was having so much pain in my abdomen that it hurt if I even moved or rolled over. I woke up at 8 am and was able to get up and use the bathroom without too much pain. I haven't been downstairs yet today and it is almost noon. I've been watching a movie called "In Her Shoes." Brenton brought me a little bell to ring if I need anything. Since I was feeling nauseated again, Brenton brought me up a can of lemon lime soda and a granola bar. If I feel this bad tomorrow, I am glad that my mom is on her way and can take care of me and cheer me up.
I'm a little bummed out because this is the big weekend in the fall where the children are out of school for 3 days, with a weekend in between. (Thurs- Mon.) Usually it is the ideal time to take our trailer out somewhere since the weather hasn't turned too cold yet. We've had snow or frost on the lawn several mornings, but it has always melted away for the afternoon. Instead, I'm suspecting that I'll just be stuck at home feeling sick.
I need some advice from any of you who live close by. When storing our trailer for the winter, we want to take down the front fence on the left side of our house. Then, we want to put gravel down on that spot next to the house. After we back the trailer up the lawn to that spot, we want to hang a double sized gate and put the rest of the fence up, theoretically so that we can open the gate and get the trailer out next spring. I prefer having the trailer right up next to the house, but David thinks it will be better to park next to our driveway and extend the fence around it. That might save the cost of getting the double size gate. I would rather put the trailer in the backyard, on the side that we don't use for anything right now. Since I don't know much about fences, I'm up to hearing any of your ideas.
Emilee
Tuesday, October 14, 2008
Tuesday October 14th
David and I had early appointments with the dentist this morning. It was our first time in over a year, since we didn't have any money for exams, etc. I'm glad that David woke up at 6:45 and brought me 2 pain pills, or I don't think I would have been able to go anywhere at 8:30. Just the fact that I was up and about and dressed and ready was amazing, considering how much I've stayed at home lately. When David started work for Security National, he became eligible for dental benefits. They cover exams and also up to 80% on fillings. So, when Dr. Lohner said David needed 2 fillings, we weren't worried. Then, once he drilled into the tooth, some blood came up and the dentist said he needed a root canal instead. Not only that, but the dentist thinks the tooth is still at risk for a chip or a crack, so he recommended getting a crown as well. To make matters worse, the waiting period for our dental insurance is 12 months before they will cover a large procedure, so we will need to pay it out of pocket. Today we only had to pay for the root canal, so I put it on the credit card. The crown will cost about $1000. We'll probably have to borrow money for that, too. I know there are places where we can get them cheaper, but I don't know if the quality will be the same.
So, just as we are discussing David's teeth and what to do, the Dentist looks at my xrays and found that I have an abcess in the gum right above my right front tooth (I have an old crown from 15 years ago and our best guess is that the metal on the crown kept irritating the gum above it and it couldn't ever heal because I kept having treatments.) The abcess doesn't hurt but it has slowly been draining fluid during this last year. The dentist recommended a root canal and a crown for my tooth. Yikes! Both David and I need the same things and they aren't covered on our plan. Right now I am going to wait and see how things go with my new treatments. I don't have immediate pain and I figure if I have lived this long with the abcess, I can stand to wait a little longer, if I need to.
It was David's suggestion to put my request about grocery shopping in my blog yesterday. Sure enough, but the end of the morning, I had several offers. My visiting teachers came to visit, then Debbie Burraston came over and got my shopping list and my credit card. Then, I called Sister Jolley, the Relief Society President to see if she could help me plant some pansies I bought last week. She brought a loaf of bread with her and shortly afterward, my next door neighbor, Christy, brought some potato-corn chowder for our dinner. I think it is like a miracle when people show up and bring us things, often at the ideal time, since I didn't have anything planned for dinner besides leftovers. Debbie came back from the store and stayed to help me put away groceries and we ate some sandwiches she had brought for lunch. I am really appreciating all the people who are serving me as well as our family.
I've still felt a little sick on and off through the day, so I have to be on top of my medication, but in general I am doing better than I was over the weekend. Just in time to begin my next round of chemotherapy tomorrow. Elaine will drive me up to Salt Lake. I've got a friend for Nathan to play with when he gets home from school. I'll try to set up some similar circumstances for Brenton and Jonny. I am always a bit nervous when they are coming home to an empty house. I'm not worried about crime, but mostly that they could get into trouble with any friends that come by or tv shows that aren't acceptable, and those sorts of things. Brenton has several times left home to go down to the creek and meet some friends without telling me. I don't want that happening while I'm gone. If I'm lucky, I might make it home by 3:30 at the very earliest.
If I don't write tomorrow night, I might be feeling sick or tired from my treatment. Sometimes I like to take my anti-nausea drugs and go to bed early when I'm not feeling well. When my parents come in a couple of days, they could even type my blog for me while I tell them what to say. So long for now!
Emilee
So, just as we are discussing David's teeth and what to do, the Dentist looks at my xrays and found that I have an abcess in the gum right above my right front tooth (I have an old crown from 15 years ago and our best guess is that the metal on the crown kept irritating the gum above it and it couldn't ever heal because I kept having treatments.) The abcess doesn't hurt but it has slowly been draining fluid during this last year. The dentist recommended a root canal and a crown for my tooth. Yikes! Both David and I need the same things and they aren't covered on our plan. Right now I am going to wait and see how things go with my new treatments. I don't have immediate pain and I figure if I have lived this long with the abcess, I can stand to wait a little longer, if I need to.
It was David's suggestion to put my request about grocery shopping in my blog yesterday. Sure enough, but the end of the morning, I had several offers. My visiting teachers came to visit, then Debbie Burraston came over and got my shopping list and my credit card. Then, I called Sister Jolley, the Relief Society President to see if she could help me plant some pansies I bought last week. She brought a loaf of bread with her and shortly afterward, my next door neighbor, Christy, brought some potato-corn chowder for our dinner. I think it is like a miracle when people show up and bring us things, often at the ideal time, since I didn't have anything planned for dinner besides leftovers. Debbie came back from the store and stayed to help me put away groceries and we ate some sandwiches she had brought for lunch. I am really appreciating all the people who are serving me as well as our family.
I've still felt a little sick on and off through the day, so I have to be on top of my medication, but in general I am doing better than I was over the weekend. Just in time to begin my next round of chemotherapy tomorrow. Elaine will drive me up to Salt Lake. I've got a friend for Nathan to play with when he gets home from school. I'll try to set up some similar circumstances for Brenton and Jonny. I am always a bit nervous when they are coming home to an empty house. I'm not worried about crime, but mostly that they could get into trouble with any friends that come by or tv shows that aren't acceptable, and those sorts of things. Brenton has several times left home to go down to the creek and meet some friends without telling me. I don't want that happening while I'm gone. If I'm lucky, I might make it home by 3:30 at the very earliest.
If I don't write tomorrow night, I might be feeling sick or tired from my treatment. Sometimes I like to take my anti-nausea drugs and go to bed early when I'm not feeling well. When my parents come in a couple of days, they could even type my blog for me while I tell them what to say. So long for now!
Emilee
Monday, October 13, 2008
Monday October 13th
I was sick again today. I woke up in a lot of pain and was surprised that the patches (yes, now I use two) weren't working to control my pain. I also had a lot of nausea today. Despite those challenges, my throat and mouth have been feeling better. Perhaps is it because I am more careful to eat foods that don't irritate as much. I rested almost all day and all evening. David came home in the afternoon, as he said he had a feeling I might need more help today. He finished up his work by using his home office this afternoon.
Even though I didn't feel well, some good things still happened today. All three boys rode their bikes to and from school and were willing to do their homework and chores after that. Jonny helped me make some homemade ice cream and Brenton cooked dinner for the family. The family is really rising to the occasion when I can't do as much for them. The reporter from the Daily Herald called and did phone interviews with David and Brenton today. I found out that my feature article will be published on Sun. Oct. 26. Even though we don't get this newspaper (local for Utah County) I think everything will be available online.
During family home evening tonight, I had a frank discussion with the children. I pointed out several people we know who had been really sick with cancer, even sicker than I am, and they had a miracle and got better. I also talked to them about the family in our ward that lost their mother and also my grandpa Baer who lost his mother. We read the scripture D&C 42:48 and discussed the fact that we can accomplish much with our faith and prayers, but in the end it is God's will we must accept.
For our activity, we watched "Little People, Big World" which is a family oriented reality show on TLC. I like watching programs that are inspiring and realistic. Tonight I realized that every one of my 4 brothers has written or called me this week. I am grateful for their love and support. In fact, I would recommend that all of you reading this go back to my previous entries and read some of the comments people have written. I have to say that I think the comments are much more interesting and inspiring than my daily descriptions of my deteriorating health!
Anyone nearby who would like to go shopping for me tomorrow, please call me after 9 am. I have been too sick to go to the store. Also, I'm having a dentist appointment at 8:30 am and he will probably prescribe a special mouthwash that he gave me last time, so I'll need to go to a pharmacy as well. I'm looking forward to taking Melissa and Benjamin up on their offers, so be careful what you offer, because I just might accept!
Emilee
Even though I didn't feel well, some good things still happened today. All three boys rode their bikes to and from school and were willing to do their homework and chores after that. Jonny helped me make some homemade ice cream and Brenton cooked dinner for the family. The family is really rising to the occasion when I can't do as much for them. The reporter from the Daily Herald called and did phone interviews with David and Brenton today. I found out that my feature article will be published on Sun. Oct. 26. Even though we don't get this newspaper (local for Utah County) I think everything will be available online.
During family home evening tonight, I had a frank discussion with the children. I pointed out several people we know who had been really sick with cancer, even sicker than I am, and they had a miracle and got better. I also talked to them about the family in our ward that lost their mother and also my grandpa Baer who lost his mother. We read the scripture D&C 42:48 and discussed the fact that we can accomplish much with our faith and prayers, but in the end it is God's will we must accept.
For our activity, we watched "Little People, Big World" which is a family oriented reality show on TLC. I like watching programs that are inspiring and realistic. Tonight I realized that every one of my 4 brothers has written or called me this week. I am grateful for their love and support. In fact, I would recommend that all of you reading this go back to my previous entries and read some of the comments people have written. I have to say that I think the comments are much more interesting and inspiring than my daily descriptions of my deteriorating health!
Anyone nearby who would like to go shopping for me tomorrow, please call me after 9 am. I have been too sick to go to the store. Also, I'm having a dentist appointment at 8:30 am and he will probably prescribe a special mouthwash that he gave me last time, so I'll need to go to a pharmacy as well. I'm looking forward to taking Melissa and Benjamin up on their offers, so be careful what you offer, because I just might accept!
Emilee
Sunday, October 12, 2008
Sunday October 12th
I was disappointed today because I had hoped to be well enough to attend church and also 2 baby blessings for extended family. Even though we had those 3 events today, surprisingly none of them conflicted timewise with the others. David's brother Brian blessed his baby William at 9 AM. David was able to bring Nathan, so I'm glad at least the two of them made it. I woke up this morning and my throat was still just as sore. I'm monitoring my temperature and I don't have a fever, so I am thinking that the soreness in my throat and on my tongue are probably side effects from the chemotherapy. I have to choose foods that are low in acid and easy to get down, like yogurt, bread (Julie brought me some homemade wheat and Chrissie brought banana bread on Friday night. Perfect timing, wasn't it?), eggs, ramen noodles, applesauce, ice cream and anything without a lot of salt or seasonings. I made some beef stroganoff while David and the kids were at church, and I was barely able to eat more than a bite or two because it hurt my mouth. Fortunately, David brought me home some Ricola lozenges (yes, he was willing to stop at a convenience store on Sunday) and they have been soothing for my throat.
My cousin Julie's baby is being blessed this evening, but I still don't feel up to going out. David took the boys and I know they will have a nice time. Sometimes I wonder if I will ever get well enough to do fun outings again, so you can see why I was glad to get out for a bit yesterday. Still, I am appreciative of the many blessings and gifts we have received, as it makes our lives a little easier, a little happier. I can tell that my illness is having an effect on the children. Brenton is 14 and he broke a school rule on Friday, so we had to take away another privilege. Jonny still has times when he loses his temper or gets frustrated easily, as does Nathan. I want to sit down with the boys and tell them about some of the blessings that have come to our family, despite our trials. I want their lives to be as normal as possible and I wish I could do more for them than I can. I guess today I'm a little sad, as I have a right to be. I'm hoping tomorrow will be better.
Emilee
My cousin Julie's baby is being blessed this evening, but I still don't feel up to going out. David took the boys and I know they will have a nice time. Sometimes I wonder if I will ever get well enough to do fun outings again, so you can see why I was glad to get out for a bit yesterday. Still, I am appreciative of the many blessings and gifts we have received, as it makes our lives a little easier, a little happier. I can tell that my illness is having an effect on the children. Brenton is 14 and he broke a school rule on Friday, so we had to take away another privilege. Jonny still has times when he loses his temper or gets frustrated easily, as does Nathan. I want to sit down with the boys and tell them about some of the blessings that have come to our family, despite our trials. I want their lives to be as normal as possible and I wish I could do more for them than I can. I guess today I'm a little sad, as I have a right to be. I'm hoping tomorrow will be better.
Emilee
Saturday, October 11, 2008
Saturday October 11th
Today was restful and fun. The morning was quiet, since the boys were gone overnight with David on the father/sons outing. My dog Sandi kept me company, even sleeping in my bed since David wasn't there! I've been recording some of those Lifetime TV movies with the dvr, so when the house is quiet, I watch one or two of them. I don't follow many dramas on network television, but I like to record some TLC programs and some on the other Discovery Network channels.
I still have a sore throat today. It makes it uncomfortable to eat. I first had one right after chemo, then it got better. Lately, it has returned and has been hurting a little more each day. I still have some pain in my liver, but it is mostly under control. Sometimes the pain meds make me sleepy so I dozed off at least once this morning while watching tv.
My brother Dave came over at lunchtime to collect the 3 boys. I was glad that he was willing to have all 3 over at the same time. Sometimes Nathan can be a handful, but Dave let him play with his old transformers and helped him learn some video games. My husband was doing some marketing for Security National at the Senior Expo in Sandy, so he was gone all afternoon. I was glad that my Aunt Linda and cousin Chrissie invited me to attend a play with them at the Hale Ctr. Theater in Orem. We went to a matinee and it was the modern musical production of Aida. The music was composed by Elton John and Tim Rice and first came out on broadway. Even though it was a small town production in Orem, I enjoyed the elegant costumes and the excellent singers and actors. On our way home, we were able to pick the boys up at Dave's, so that worked out well.
I'm just going to rest this evening. The kids are watching a science fiction movie that I recorded on dvr. I like the fact that the movie was edited for television, so many of the bad words are replaced by milder versions. I feel grateful that I can still go out and do things, as long as I bring my pain pills and some snacks with me. I'm actually looking forward to my treatment on Wednesday, to see if it will help against the pain and swelling. Maybe I'll actually feel better instead of feeling worse. Who knows?
Emilee
I still have a sore throat today. It makes it uncomfortable to eat. I first had one right after chemo, then it got better. Lately, it has returned and has been hurting a little more each day. I still have some pain in my liver, but it is mostly under control. Sometimes the pain meds make me sleepy so I dozed off at least once this morning while watching tv.
My brother Dave came over at lunchtime to collect the 3 boys. I was glad that he was willing to have all 3 over at the same time. Sometimes Nathan can be a handful, but Dave let him play with his old transformers and helped him learn some video games. My husband was doing some marketing for Security National at the Senior Expo in Sandy, so he was gone all afternoon. I was glad that my Aunt Linda and cousin Chrissie invited me to attend a play with them at the Hale Ctr. Theater in Orem. We went to a matinee and it was the modern musical production of Aida. The music was composed by Elton John and Tim Rice and first came out on broadway. Even though it was a small town production in Orem, I enjoyed the elegant costumes and the excellent singers and actors. On our way home, we were able to pick the boys up at Dave's, so that worked out well.
I'm just going to rest this evening. The kids are watching a science fiction movie that I recorded on dvr. I like the fact that the movie was edited for television, so many of the bad words are replaced by milder versions. I feel grateful that I can still go out and do things, as long as I bring my pain pills and some snacks with me. I'm actually looking forward to my treatment on Wednesday, to see if it will help against the pain and swelling. Maybe I'll actually feel better instead of feeling worse. Who knows?
Emilee
Friday, October 10, 2008
Friday October 10th
I didn't get a chance to write on my blog yesterday. I woke up yesterday morning with a lot of pain in my liver area and increased swelling in my abdomen. I took pain pills every few hours yesterday and I wanted to wait until today to see if this "attack" would subside on its own. One fun thing I got to do yesterday, despite feeling sick, is help Nathan decorate a pumpkin for his cub scout pack meeting. The instructions were to make the pumpkin into a character from a book. I just knew someone else would do "Harry Potter" so I took Nathan up in his room to search the bookshelf for an alternative. I kept thinking, what character's face is orange and round?? Finally we were in luck when we discovered a Garfield the cat book. We used paint and markers to draw the face of Garfield on the pumpkin! We cut some heavy orange paper to make the ears and we glued a button on his nose. I think Nathan was happy with it. I was too sick to attend pack meeting and David had an appointment, so I drove Jonny over with Nathan. Oh, and sure enough, as I was dropping the boys off, another kid was walking into the building with a Harry Potter pumpkin!
Last night I was up every couple of hours to take more pain medicine, so I had to call my oncologist this morning. He is ordering a CAT scan to be done at American Fork Hospital and he will call me back after he gets the results. It is scary for me, as I wonder if the swelling and pain will ever get better. I'll just pray that the Dr. will know the right thing to do for me.
I appreciate everyone who reads my blog and writes comments. I am glad to have the beautiful book Chrissie put together for me, which has many letters from family and friends. I will be able to read your comments and words of comfort over and over. Thanks again! Emilee
Last night I was up every couple of hours to take more pain medicine, so I had to call my oncologist this morning. He is ordering a CAT scan to be done at American Fork Hospital and he will call me back after he gets the results. It is scary for me, as I wonder if the swelling and pain will ever get better. I'll just pray that the Dr. will know the right thing to do for me.
I appreciate everyone who reads my blog and writes comments. I am glad to have the beautiful book Chrissie put together for me, which has many letters from family and friends. I will be able to read your comments and words of comfort over and over. Thanks again! Emilee
Wednesday, October 8, 2008
Wednesday October 8th
I was very relieved this morning that the music teacher had an extra tie for Jonny. I had envisioned having to shop all over town to find one like it, so I got to stay home instead. I felt pretty well today, but still need to take the anti-nausea pills. I got a massage this afternoon at the chiropractor, then went to pick up a prescription.
When I got home, Elaine was there making dinner for us. She stayed and went to Jonny's concert with David and the boys. I drove by myself down to Provo to hear a presentation from a natural products company called Daniel Chapter One. It was interesting to hear their perspective about conventional drugs versus herbs and supplements. They make some claims on their website about curing cancer and other diseases. As a result the FDA wants to shut them down, or at least have them modify their website. I stayed for the 2 hour meeting, then the videographer asked me to tell my story, specifically about the options my oncologist gave me versus the many different alternative treatments for cancer. My opinion is not one hundred percent on the medical side or one hundred percent on the herbal side. I believe that doctors can help people by prescribing drugs, but I also wish that more herbal supplements could be researched and sold freely, especitally when it can be proven that they can be of benefit to a person, without so many side effects as traditional drugs.
My best approach is to be prayerful about my treatments and to feel calm about them. When I am nervous and scared, questioning my doctor's recommendation, that is a sign to me that I need to look elsewhere and discover other options. I wish money were not an issue in my case. The insurance pays big bucks to the doctors and clinics where I get treated, however the insurance would not pay for me to go to a naturopathic doctor or to get herbal supplements. Perhaps there are some supplements out there that could cure or at least lessen the amount of disease in my body, but it can be hard to know which one to choose. I already use some supplements and have been given others to try. This company tonight claims to have an entire regimen for cancer patients and have many testimonials of people being healed. If someone were to pay for the products, I would be willing to try this regimen, as it is obvious that the chemotherapy has not been working for me. I am scared that my liver may not respond to my new treatments, but I try to have hope that I will stay here on earth as long as God wants me to. I know that my life is in His hands.
Emilee
When I got home, Elaine was there making dinner for us. She stayed and went to Jonny's concert with David and the boys. I drove by myself down to Provo to hear a presentation from a natural products company called Daniel Chapter One. It was interesting to hear their perspective about conventional drugs versus herbs and supplements. They make some claims on their website about curing cancer and other diseases. As a result the FDA wants to shut them down, or at least have them modify their website. I stayed for the 2 hour meeting, then the videographer asked me to tell my story, specifically about the options my oncologist gave me versus the many different alternative treatments for cancer. My opinion is not one hundred percent on the medical side or one hundred percent on the herbal side. I believe that doctors can help people by prescribing drugs, but I also wish that more herbal supplements could be researched and sold freely, especitally when it can be proven that they can be of benefit to a person, without so many side effects as traditional drugs.
My best approach is to be prayerful about my treatments and to feel calm about them. When I am nervous and scared, questioning my doctor's recommendation, that is a sign to me that I need to look elsewhere and discover other options. I wish money were not an issue in my case. The insurance pays big bucks to the doctors and clinics where I get treated, however the insurance would not pay for me to go to a naturopathic doctor or to get herbal supplements. Perhaps there are some supplements out there that could cure or at least lessen the amount of disease in my body, but it can be hard to know which one to choose. I already use some supplements and have been given others to try. This company tonight claims to have an entire regimen for cancer patients and have many testimonials of people being healed. If someone were to pay for the products, I would be willing to try this regimen, as it is obvious that the chemotherapy has not been working for me. I am scared that my liver may not respond to my new treatments, but I try to have hope that I will stay here on earth as long as God wants me to. I know that my life is in His hands.
Emilee
Tuesday, October 7, 2008
Tuesday October 7th
I've been feeling a little better each day in the last week. I can tell I don't have as much stamina as I used to. Any kind of exertion (like walking all over Wal-Mart) wears me out and I have to lie down and rest for a bit. I took the boys shopping this afternoon. We went to PetSmart for dog food and to get fish for Jonny's snake. We also stopped at Costco for a few things.
Jonny is taking beginning band and he plays the clarinet. The first band concert is tomorrow night and he can't find the blue tie he is supposed to wear. I just spent the last half hour searching his entire bedroom, inch by inch, but I didn't find the tie. I suppose tomorrow morning I might be able to borrow a tie rom another band member or get some material that is the same color, so that I can go shopping and find Jonny another one. The originals were ordered by the school, from an internet-based company. So, that is the latest drama in our lives. Of course it happened right at the time that the boys were supposed to be going to bed!
Today my cousin Chrissie brought over a beautiful album with letters and photos from my many friends and relatives. I went through 4 tissues because I got emotional and started crying. I suppose it was a good kind of cry. I am honored and touched by the kind words and poetry and inspiration on those pages. I know I will cherish this book and read it again and again.
Thanks to all my family and loved ones. I appreciate your love and support.
Emilee
Jonny is taking beginning band and he plays the clarinet. The first band concert is tomorrow night and he can't find the blue tie he is supposed to wear. I just spent the last half hour searching his entire bedroom, inch by inch, but I didn't find the tie. I suppose tomorrow morning I might be able to borrow a tie rom another band member or get some material that is the same color, so that I can go shopping and find Jonny another one. The originals were ordered by the school, from an internet-based company. So, that is the latest drama in our lives. Of course it happened right at the time that the boys were supposed to be going to bed!
Today my cousin Chrissie brought over a beautiful album with letters and photos from my many friends and relatives. I went through 4 tissues because I got emotional and started crying. I suppose it was a good kind of cry. I am honored and touched by the kind words and poetry and inspiration on those pages. I know I will cherish this book and read it again and again.
Thanks to all my family and loved ones. I appreciate your love and support.
Emilee
Monday, October 6, 2008
Monday, October 6th
Today my sister in law, Jennie, came and helped me around the house. We pulled everything out of my upstairs linen closet and sorted it. I was glad to throw some things away and give a nice basketful to DI. Jennie even made labels for the shelves so that we can keep the closet organized. Yeah!
We had a flood in our basement because of the heavy rains over the weekend. The water seeped in through the window well and got the carpet all wet. This is about the 3rd or 4th time this has happened. David and I both want to get some different flooring for this room (no more carpet). Does anyone have a suggestion for us? This is our exercise room, though we also have several bookshelves as well. My idea was to put down linoleum and then get an area rug for part of the room. Jennie mentioned some type of flooring that is rubber, I think, and the panels fit together like a jigsaw puzzle. It is used at gyms, I think.
I also visited the pain management Dr. this afternoon. He was kind and helpful and wants to keep meeting with me until all my pain is under control. I have my next treatment on the 15th for an infusion of Ixempra and then I will start taking the Xeloda pills again. Last time I had a problem with my back hurting, so I had to stop the oral medicine. If my pain is better under control this time, maybe I will be able to continue the pills and they will help shrink my liver. It is still enlarged, which isn't really uncomfortable, but it makes my clothes fit funny and sometimes it is a bit like being pregnant, having a swollen belly.
My nausea is slowly getting better, so I am hopeful that I can enjoy the next week and feel up to doing more things.
Emilee
We had a flood in our basement because of the heavy rains over the weekend. The water seeped in through the window well and got the carpet all wet. This is about the 3rd or 4th time this has happened. David and I both want to get some different flooring for this room (no more carpet). Does anyone have a suggestion for us? This is our exercise room, though we also have several bookshelves as well. My idea was to put down linoleum and then get an area rug for part of the room. Jennie mentioned some type of flooring that is rubber, I think, and the panels fit together like a jigsaw puzzle. It is used at gyms, I think.
I also visited the pain management Dr. this afternoon. He was kind and helpful and wants to keep meeting with me until all my pain is under control. I have my next treatment on the 15th for an infusion of Ixempra and then I will start taking the Xeloda pills again. Last time I had a problem with my back hurting, so I had to stop the oral medicine. If my pain is better under control this time, maybe I will be able to continue the pills and they will help shrink my liver. It is still enlarged, which isn't really uncomfortable, but it makes my clothes fit funny and sometimes it is a bit like being pregnant, having a swollen belly.
My nausea is slowly getting better, so I am hopeful that I can enjoy the next week and feel up to doing more things.
Emilee
Sunday, October 5, 2008
Sunday October 5th
I want to tell you a bit about the photo at the beginning of my blog. It was taken near Portland, Maine, on a family trip in 2005, so we are all 3 years younger in the photo. I am still learning how to add recent photos along with my text, but I did upload our recent family photo on the side bar which says "view my profile." Since I got sick in 2003, we have tried to do a lot of traveling so we can make memories as a family. One of my favorite hobbies is to make scrapbooks for our trips.
We haven't traveled much since I started chemotherapy in March of 2007. We have taken a few road trips in our trailer: Arches National Park, Bear Lake, Yellowstone, Twin Falls (Idaho) and Nauvoo (Illinois.) The past year has been very difficult for David, as the mortgage market continues to change and decline. He had to sell his company in March and is now working for Security National, doing reverse as well as regular mortgages. Even though we might not be able to afford it, I have a dream of taking David and our boys on an ocean cruise, as we have never had that opportunity. Right now, such a trip would not be possible, because of my illness. Sometimes I wonder if I will ever get well enough to travel again.
Today was relaxing and fun. We watched conference, but we also played some family games and made homemade ice cream. I sent David, Brenton and Jonny each to a neighbor to see if they could gather some ice cubes. Brenton came home with a quart bag full. David came home with a larger bag, but Jonny came back with a huge plastic shopping bag full of ice. At least next time we know which neighbor to ask when we need ice!
I seem to be feeling a little better each day. I am getting plenty of sleep and I even dozed off a bit during conference. I hope this coming week I will feel well enough to do some of my hobbies and cook more for my family. Being sick has sure made me appreciate the times when I do feel better.
Emilee
We haven't traveled much since I started chemotherapy in March of 2007. We have taken a few road trips in our trailer: Arches National Park, Bear Lake, Yellowstone, Twin Falls (Idaho) and Nauvoo (Illinois.) The past year has been very difficult for David, as the mortgage market continues to change and decline. He had to sell his company in March and is now working for Security National, doing reverse as well as regular mortgages. Even though we might not be able to afford it, I have a dream of taking David and our boys on an ocean cruise, as we have never had that opportunity. Right now, such a trip would not be possible, because of my illness. Sometimes I wonder if I will ever get well enough to travel again.
Today was relaxing and fun. We watched conference, but we also played some family games and made homemade ice cream. I sent David, Brenton and Jonny each to a neighbor to see if they could gather some ice cubes. Brenton came home with a quart bag full. David came home with a larger bag, but Jonny came back with a huge plastic shopping bag full of ice. At least next time we know which neighbor to ask when we need ice!
I seem to be feeling a little better each day. I am getting plenty of sleep and I even dozed off a bit during conference. I hope this coming week I will feel well enough to do some of my hobbies and cook more for my family. Being sick has sure made me appreciate the times when I do feel better.
Emilee
Saturday, October 4, 2008
Saturday October 4th
Today was General Conference. We were able to get 5 tickets from David's sister, so our whole family could attend the morning session. It was rainy all day, but still the crowds of people came out to attend conference. Nathan just barely met the age limit (8 and older), so it was his first time. I brought him some paper and some Friend magazines, but he was bored pretty much the whole time and kept asking how much longer until it was over. I really enjoyed the talks, at least the ones that I stayed awake for. I kept dozing off during the second hour, as my anti-nausea medicine makes me sleepy. At least that made the 2 hours seem to pass by really fast!
On our way home from Salt Lake, we stopped at IKEA in Draper, as David had never been there. We didn't buy much, just a few snacks and a spray bottle (to spray the dog when she misbehaves!) David just got home from taking Brenton and Jonny to the priesthood session at the stake center. I was grateful to be feeling well today, since I am keeping up with my medicines. After feeling sick off and on during this past week, I really appreciated having an outing with the family, and being able to enjoy it, too.
Emilee
On our way home from Salt Lake, we stopped at IKEA in Draper, as David had never been there. We didn't buy much, just a few snacks and a spray bottle (to spray the dog when she misbehaves!) David just got home from taking Brenton and Jonny to the priesthood session at the stake center. I was grateful to be feeling well today, since I am keeping up with my medicines. After feeling sick off and on during this past week, I really appreciated having an outing with the family, and being able to enjoy it, too.
Emilee
Friday, October 3, 2008
Friday October 3rd
Elaine drove me to Salt Lake to see my oncologist today. He wanted to check my blood counts and make sure I am managing my symptoms. At my old oncologist's office, I would first see the doctor, then the nurses would draw blood and do the blood count. They would show it to the doctor and she would decide if I my counts were good enough to have a treatment that day. Also the doctor would decide if I needed a shot or a transfusion to boost my red blood cell count. I'm explaining this because Dr. Shehadeh's office does it the opposite way. My first stop was at their lab room where the nurse drew blood from my port. We had to wait another 20 minutes or so before Dr. Shehadeh came in, but I was really impressed that he had my blood results in his hand and he took the time to look at them carefully and explain them to me. He was very genuine and caring and he reviewed with me the plan for my next cycle. He asked about my pain level (which is under good control with my new patch.) He asked about any other side effects I might be experiencing. I think, as time goes on, I am likingl Dr. Shehadeh more and more. Today I commented to the nurse how grateful I was to have chosen Dr. Shehadeh. Her response surprised me. The nurse said that if she had my same illness, Dr. Shehadeh would be her first choice for an oncologist. Then she mentioned that she had worked with several other doctors before, so she has a way to compare him with the others.
Elaine and I went to lunch on our way back from Salt Lake. We met up with Shelly, Brian's wife, and her new baby, William. Elaine brought me home, then the boys came home from school just a while later. At 3:30 the photographer for the Daily Herald came to get some photos of the children "doing just what they normally do," she said. I convinced the boys to play a board game wtih me, so that gave her an opportunity to photograph all of us together.
I am still having nausea, but I am able to control it by taking my pills regularly. They make me drowsy, more than usual, so I have been sleeping in every morning. I suppose the extra sleep won't hurt me! David and I were going to go out on a date tonight, but two of our boys got in trouble this afternoon, so we are staying in to watch a movie. I'll let you know how it goes.
Emilee
Elaine and I went to lunch on our way back from Salt Lake. We met up with Shelly, Brian's wife, and her new baby, William. Elaine brought me home, then the boys came home from school just a while later. At 3:30 the photographer for the Daily Herald came to get some photos of the children "doing just what they normally do," she said. I convinced the boys to play a board game wtih me, so that gave her an opportunity to photograph all of us together.
I am still having nausea, but I am able to control it by taking my pills regularly. They make me drowsy, more than usual, so I have been sleeping in every morning. I suppose the extra sleep won't hurt me! David and I were going to go out on a date tonight, but two of our boys got in trouble this afternoon, so we are staying in to watch a movie. I'll let you know how it goes.
Emilee
Thursday, October 2, 2008
Thursday October 2
I had nausea again today. I think the effects of the chemotherapy drug are catching up to me. I was careful to use my anti-nausea medications, so I managed not to feel too sick.
This morning, a reporter from the Daily Herald came to my house for an interview. I already knew that the newspaper wanted to do a feature, since the photographer has met me several times to take pictures. The reporter asked me several questions that made me think, for example "Do you ever ask 'why me'? How does your illness affect your family life? Have you spoken with your children about your mortality? Does being LDS help you cope with this challenge? At the end, he asked me what I would say to a woman who is newly diagnosed with breast cancer. He also asked if I had any advice or opinions about women in general who are worried about someday getting breast cancer. He took notes on my answers and it was kind of like a counseling session, since it gave me a chance to express my feelings and talk about my problems.
This evening, we went as a family to Thanksgiving Gardens. We've had a membership there for the past year. My boys and David take turns pushing me in a wheelchair as we looked at the many lush perennials still blooming at this time of year. I love flowers and I love the soothing tranquility of the gardens at sunset. I am glad I felt well enough to go on an outing tonight.
Emilee
This morning, a reporter from the Daily Herald came to my house for an interview. I already knew that the newspaper wanted to do a feature, since the photographer has met me several times to take pictures. The reporter asked me several questions that made me think, for example "Do you ever ask 'why me'? How does your illness affect your family life? Have you spoken with your children about your mortality? Does being LDS help you cope with this challenge? At the end, he asked me what I would say to a woman who is newly diagnosed with breast cancer. He also asked if I had any advice or opinions about women in general who are worried about someday getting breast cancer. He took notes on my answers and it was kind of like a counseling session, since it gave me a chance to express my feelings and talk about my problems.
This evening, we went as a family to Thanksgiving Gardens. We've had a membership there for the past year. My boys and David take turns pushing me in a wheelchair as we looked at the many lush perennials still blooming at this time of year. I love flowers and I love the soothing tranquility of the gardens at sunset. I am glad I felt well enough to go on an outing tonight.
Emilee
Wednesday, October 1, 2008
Monday October 1st
I've been feeling sick to my stomach all day long. I threw up once in the morning and again in the afternoon. I am wondering if my nausea is related to the chemotherapy, even though it has been a week since my treatment. Tomorrow I'll have to start on the anti-nausea pills right away, so I don't end up throwing up again.
Elaine came after school and picked up the boys and brought them to her house. I hope they were helpful for her and Len, and it was helpful to me so I could enjoy a nice massage at the chiropractor's office this afternoon (after taking my anti-nausea pills.) The nausea is worse when I stand up and start moving around, so I try to lie down when I start feeling sick.
I am really appreciating the books and movies my neighbors have lent me. I loved the tasty cookies our neighbors brought tonight. They were perfect for our dessert. I am glad that I can get support and friendship from so many people, even the ones who live far away.
Emilee
Elaine came after school and picked up the boys and brought them to her house. I hope they were helpful for her and Len, and it was helpful to me so I could enjoy a nice massage at the chiropractor's office this afternoon (after taking my anti-nausea pills.) The nausea is worse when I stand up and start moving around, so I try to lie down when I start feeling sick.
I am really appreciating the books and movies my neighbors have lent me. I loved the tasty cookies our neighbors brought tonight. They were perfect for our dessert. I am glad that I can get support and friendship from so many people, even the ones who live far away.
Emilee
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