Friday, February 27, 2009

Friday, February 27

I edited the post a bit on 2/28/09. This is Emilee's sister-in-law, Jennie, updating this post. David asked me to help out until he and Emilee can write their own post. I'll give a brief update of the events of the past few days.

Emilee chose to end chemotherapy treatments and to use hospice care. It is defined as follows: "Hospice care is suitable when you no longer benefit from cancer treatment and you are expected to live 6 months or less. Hospice gives you palliative care, which is treatment to help relieve cancer-related symptoms, but not cure the disease; its main purpose is to improve your quality of life. You, your family, and your doctor decide together when hospice care should begin."

Hospice also covers pain control symptoms, mediation between doctors, nurses, therpists, etc., home care, family counseling, bereavement, etc. if that is what David and Emilee decide in their plan. Basically, it is a service in the home that will help Emilee be comfortable and manage her health needs as well as providing support for the family.

Emilee went to the doctor's for more pain management relief -it's been a tough few days and she has had to take extra pain medication to remain comfortable. She is groggy at times. If you would like to visit, please call before and see if it is a good time to come over -she really enjoys it and it lifts her spirits as well as those in the rest of the family.

David mentioned the doctor removed 2 liters of fluid from her abdomen today. Her swelling in the stomach is still very apparent but the swelling in her hands and face looked better than past times I've seen her.

I'll keep you posted as David and Emilee direct me to do so. You can e-mail me at if you have further questions. Also, the blog background has been acting wacky lately, so bear with me until the problem is solved. Thank you for your thoughts, prayers, comments, visits, and acts of kindness. They are felt and keep everyone afloat. -Jennie Kilstrom

Tuesday, February 24, 2009

Tuesday February 24th

I am feeling a little sad today. I haven't feel well physically and that often affects my mood. I am also still doing research toward making my decision to start hospice or not. I had a nice visit from my brother Daniel and his daughter. They brought me some beautiful tulip bulbs, the kind that grow in water and you can see the roots at the bottom. He even brought treats, as Greg did last night. We never lack for sweets at our house!
We went shopping last night to pick up some maxi-pads to put over the spot on my abdomen that is draining. This morning I noticed it wasn't wet, so the leaking has stopped, at least for now. Thsnk you to whoever added more money to my donation account. David's income has been kind of hit and miss through his changing companies, so it is nice to know that we at least have some money to pay the medical bills. I promise that's all I will spend it on!
I have Dr. appointments tomorrow and the next day, so by the next time I write I should have a little more news for you.

Sunday, February 22, 2009

Sunday February 22nd

My favorite time of day is the evening, since David is usually around and I have my pain under control and I can lie down and relax or soak in the bath. My boyw were all visiting friends or cousins until late last night, so David and I snuggled up with the dog and watched I Love Lucy.

On Saturday morning the older boys came home and my parents came over to work on projects around the house. My project was to help make a list of projects for my parents and for others to be able to help us. I took a nap in the afternoon, then my two cousins, Julie and Chrissie and their husbands brought delicious soup and sourdough bread and mint brownies from Kneaders bakery. My parents enjoyed the visit as well and I got to hold Julie's baby Anna who is 5 months old. So cute!
Last night was Little House on the Prairie for our family entertainment. All of us like to try to guess what will happen on the episode, given the music and the characters, etc. Then we have a little scripture study and go to bed. Both boys got to stay up late on Friday night, so I had to make sure they wouldn't be tired for church in the morning.

Today was church, but because of my illness, I wake up almost every morning with pain and discomfort. I have body aches and my abdomen is filling up again with fluid. It takes a half hour and a little breakfast before the pain medicine works and I feel half normal. It is most comfortable for me to lie on my side rather than on my back and it hurts when I roll over. Brenton stayed home with me this morning, as he slightly sprained his ankle last night.

After church, The hometeacher came over to administer the sacrament to Brenton and to me. After that, I started noticing that my shirt and pants were wet. At first I thought I had spilled some water on them. Then, when I went to change into new clothes, those clothes started getting wet, too. After a little investigation, I figured out that my abdominal fluid is leaking out of one of the holes they made on Thursday to drain it out. My mom helped me use medical tape and a washcloth to cover the spot on my lower abdomen where I am "leaking." We've already had to change it once. If this continues tomorrow, I should probably go to my doctor and find out what else to do.

This will be my week of research and prayer, as I decide whether to try more chemotherapy or stop conventional treatment and sign up for hospice care. Dr. Shehadeh recommends the hospice option, as he says he has nothing else to offer me, now that the cancer is resistant to every type of chemotherapy. I'll ask the opinion of another Dr. or two to make sure this is the case. If I quit chemotherapy, I will also take more of my supplements and lean toward natural methods.
Thanks for your thoughts and prayers.

Friday, February 20, 2009

Friday February 20th

I've been feeling sick all week, but I did have a surprising blessing yesterday. Elaine drove me to Provo to meet with Dr. Garner, the pain management specialist. After examining my bloated belly, he immediately made a call and put in motion a plan for me to go downstairs and have the excess fluid removed. I don't know why my oncologist didn't think of this, but I suppose Dr. Garner's specialty is helping people with pain and discomfort to feel better.

The nurse was first to use the ultrasound and look for a good place to put the needle. This procedure is called paracentesis so it is similar to an amniocentesis. I joked with the nurse that at least there was no baby to worry about when they started poking me. The procedure was quick and not painful at all. The radiologist confirmed a good site to poke and he put the needle in and connected it to a bottle. I filled a liter bottle in less than 10 minutes so the nurse switched to another one. They both had to press and maneuver my belly to get the maximum amount of fluid out. By the end, they had 1.6 liters and it weighed 5 pounds. Wow! Where else can you go and lose 5 pounds instantly! Actually it wasn't fat, but fluid that had come through my liver but my liver wasn't able to process because of the cancer. I still have a swollen stomach, but I can breathe much better and so it was a real blessing. Thanks for your prayers! It seems that they are having a good effect!

Wednesday, February 18, 2009

Wednesday Feb. 18th

Since I wrote last, my belly still looks like I'm about 6 ,months pregnant. This makes it hard to get out of bed or to pick up an item on the floor. I'm messy in the kitchen, too, so I'm always making a mess for others to help with the dishes.

In general, I have been feeling quite sick during the last few days. I have indigestion and nausea, also pain in my back and other bones, which I keep on hand. Tomorrow is my appt. with Dr. Garner, the pain control doctor. Even though I've had a lot of extra muscle pain, he will need to see my big belly and that as well.

I pray that my burden will be lifted, if it be the Lord's will. I will trust in the Savior who has already suffered for me. I will stay as long as God wants me to stay on the earth.

Saturday, February 14, 2009

Saturday Feb. 14

Happy Valentines Day! Mom helped me on Thursday night to put together valentines for Nathan's 3rd grade class, where they all exchange cards. Yesterday, the 13th was Brenton's 15th birthday. He came home with paper hearts on the door to his room and some balloons and Hershey's kissables. He would never guess that his aunt Jennie did it! This wasn't a party year for Brenton so he and my brother Dave brought 2 friends and Jonny to JCW's, a hamburger place with tons of other menu items, not just gourmet burgers. Then they came back to have cupcakes with candles in them. The rest of the evening, Jonny and one of Brenton's friends played Wii, using a new game from his uncle Dave Dolberg. I remember the boys coming home, but I think I went to sleep before David took Brenton's friend home. Nathan was at his cousin Clark's all evening. Thanks again to Melissa and Greg!
Because my stomach is swollen and distended, it looks like I'm about 6 weeks pregnant. It has bothered me all week and so I went to see my oncologist. Unfortunately, he didn't have anything to offer me. He said that diuretics would just take needed fluids out of my body. He didn't give me hope Dr. Shehadeh fold me that I would soon need to make the decision to keep going with chemotherapy or stop medical treatments and get hospice care instead. I'm going to ask around and see if any other doctors have other suggestions or treatments for me. The naturopathic doctor told me of some alternative treatments such as high doses of either vitamin C or melatonin. Another study was involved in giving baking soda, dissolved in water to change the body's PH level. Dr. Shehadeh said that he was doubtful these could help me. I did buy some supplements, so I'll keep using those.
I want to try one more 3-week round of this drug, especially if the swelling in my belly goes down. That would indicate that the swelling was partially due to the chemotherapy drug. I'll have to rely on the Lord to help me make my decision to keep going with treatment or to quit. Dr. Shehadeh said that at this point, the remaining cancer cells are resistant to the chemo drugs.
I'm too embarrassed to go to church, as I only have a few shirts that are big enough to cover my belly. Even many of my pants can't button in the front, so I have to wear elastic waistlines.
It has been wonderful to have my parents here this week. I feel glad, however, that they have promised to come again when I need help. I was glad to have an outing, so David and I took the older boys out for some shopping. We first went to DI to find a suit for Brenton. We ended up buying a dark blue blazer and khaki dress pants, as well as a long-sleeved blue dress shirt. Jonny picked out a necktie that had CTR in small print, following the lines of the color
I'm looking forward to a relaxing Sunday tomorrow. The boys are usually cooperative and we have a family home evening. I will get more time to talk to my husband and I usually feel like he has lightened my load. Thanks for your comments on this blog. I enjoy reading your ideas and inspiration.

Thursday, February 12, 2009

Thursday, Feb. 12th

I've been feeling sick all week, due to my treatments. My parents are helping with the children and keeping the house clean and food on the table. One symptom I'm havivng is severe edema, or retention of fluid, mostly in my abdomen but also in my lower legs and calves. My abdomen is so swollen it makes me short of breath and puts uncomfortable pressure on my stomach. I'll be going to the Dr. tomorrow to get my usual blood tests and also to ask him some questions. I really hope he'll find a way to reduce this terrible swelling.

Today I attended a cancer support group at my old clinic. I had a hard time expressing my feelings without crying. Once I started crying, I could hardly breathe because of the pressure on my lungs. Still, it was good to get my emotions out instead of holding them all in. I pray for faith and not fear, but the swelling problems have made me afraid for my life. I am just not sure whether I will recover if I have more complications.

Brenton is excited for his birthday tomorrow. He is going out to dinner with my brother Dave, two of Brenton's friends and Jonny. Brenton is hoping to use his birthday money to buy a "guitar hero" game for the Wii. Our gift is to give him a new Sunday suit, but we'll have to shop for that another time.

Tonight I was able to attend a Presidential Pageant at the kid's school, Lincoln Academy. Jonathan performed one number with the band and Brenton performed with the choir. It was my first chance to hear them perform since the school year started last August. I'm glad my parents were also able to be there. Both the combined bands and the combined choirs sounded great as they played patriotic music. We didn't stay for the whole program, just to hear the band and the choir perform.

Thanks for your prayers and support. I try to get through each day without too much nausea and pain and discomfort. I like to read and to watch educational programs on cable. I'm glad my parents are here to keep me company and drive me to appointments and play with my boys. I am always happy when the boys come home from school and come up to greet me. It is those little things that I have to look forward to, even though I am sad and frustrated with being sick.

I'm sad that I won't be up to going out with my husband for Valentine's Day, but maybe he can make it up to me another time.

Tuesday, February 10, 2009

Tuesday February 10th

My parents came over yesterday morning to help me. It was nice to have them here to help with the house, as I needed to rest most of the time. I've been really concerned about the increased swelling in my abdomen, due to the liver tumors. It makes me look about 5 months pregnant, but with most of the weight on top, against my ribcage. In an effort to get more advice, my parents went with me to a naturopathic Dr. in the afternoon. He recommended several supplements which should give my liver support and maybe help shrink the swelling. We stopped at a Health Food store and were able to find most of the items. One of them is castor oil which you are supposed to put on a damp cloth and spread it over your abdomen, so it can get absorbed by your skin. The rest of the supplements I can take by mouth.

David's dad also came by to take the boys out for haircuts yesterday afternoon. That was such a thoughful gift! The boys look really sharp. I'm really glad when the children can interact with and learn from their grandparents. This afternoon when the boys got home from school, my dad helped Jonny and his friend with their communication merit badge. Now, Dad is helping Brenton memorize lines for the play he is practicing for. Mom is encouraging Nathan to do his chores, though he is acting kind of resistant at the moment.

Today, I've got most of my chemo side effects under control with medication. I used the castor oil pack this morning. I didn't really notice any differences, but next time I am supposed to use a heating pad to increase the absorption into my skin. I'm using my GoLight right now to try to substitute for sunlight. I've been a little sad lately and worried about my new treatments and my growing liver. David has been feeling a lot of stress due to work and my worsening illness. In addition, his mother has not yet received a diagnosis for some of her health concerns. I think the winter season may also be affecting his mood. It has been kind of stormy and cloudy lately. Maybe my parents can drive me to a cancer support group on Thursday.

On the flip side, the children seem to be happy and they have been really great at doing their homework and chores. They give me hugs when I'm sad and they come and chat with me. They have also been getting along a lot better. Maybe having the Wii has helped, but Nathan and Jonny don't argue nearly as much as they used to and they even play together now. Brenton is excited about his birthday on Friday. He'll be 15. He won't have a friends party this year, but we can celebrate as a family. So, despite my large challenges, the Lord has blessed me with more peace and happiness in our home. We are also blessed with supportive parents and loving friends and relatives and neighbors.

Sunday, February 8, 2009

February 8th

I'm feeling sick today. I guess the chemo on Wednesday finally did me in. I have muscle aches and a sore mouth and I am nauseated and tired. I'm looking forward to my parents arriving tomorrow to help run our household and give me a little TLC.

Last week, I received the first medical bill for 2009. I first have to meet a deductible for the health insurance company, then they cover 80% of my bills until I reach my out of pocket maximum for the year. It's that 20% that I always have to worry about! I edited the side bars on my blog to make it easier for you to look up my donation account. Anything you can send will help cheer me up.

My liver has been really swollen due to the tumors lately and I have pink eye as well. Since my oncologist didn't offer me any medicine except chemotherapy, I am hoping the naturopathic doctor might have a remedy or two that I could try to help my liver. It scares me to look like I'm pregnant because of my bulging stomach. It also means I can only wear the loose tops in my wardrobe. I stayed home from church today because my eye was red and almost swollen shut.

Well, thanks for listening to all of my complaints. I guess it helps to talk about them. I hope I will be feeling a little better soon.

Thursday, February 5, 2009

Thursday January 5th

Hello Everyone! I took a vacation from writing my blog because...I was on vacation! We took the family down to San Diego for a few days and enjoyed the sun and activities. Before the trip, I had finished a round of chemotherapy and then had a PET scan to see if the treatments had reduced the tumors or if they had grown. The results were in before we left on our trip, so I called to schedule an appointment with my oncologist for after our trip. The staff needed to know if they needed to schedule time for a chemo treatment or just a consultation, so they told me they would consult the Dr. and call me back. Dr. Shehadeh himself called back and confirmed that yes, the tumors had grown since the last scan and I would be starting a new drug and a new round of chemotherapy when I returned.
With that in mind, I was extra grateful to be able to travel with David and the children before starting the new drug and treatment schedule. We stayed in a cute 2 bedroom cottage just 2 blocks from the beach. We went to Sea World, Legoland and the Wild Animal Park. We also took a bus to Tijuana. Now the kids can say they have been to Mexico! My favorite activity of the trip was our 3 hour whale watching cruise. We got to see grey whales and we followed them in the boat, as this is the time of year that they migrate to the Baha peninsula to give birth to their young. We also saw a sea lion and several black and white dolphins. We got an extra bonus, as we approached a dive boat and saw an adolescent grey whale playing nearby. Our ship stopped the motor and we saw the whale as e came around to the dive boat and rolled and waved his fin at them. He swam around with a dolphin nearby. When he moved to the other side of the boat, we followed around in ours and the whale came near us and did the same roll and wave of his fin. We could see the little white limpets on his usually grey skin. Another whale watching boat came over to watch from a distance. When we returned to the harbor, the naturalist on board told us not to mention our bonus to the people in line for the next boat, as it is rare that a whale will stay in one place that long.
We got the boys shovels and they had fun at the beach, digging piles of sand and watching the tide come in and wash them away. We also drove to a place with some tide pools and the kids found sea anemone, sea snails, hermit crabs and little black crabs. We made our own breakfast and lunches then ate out a few times at nice restaurants for dinner, ordering seafood, of course!
One morning, the kids had been playing at the beach and David came back to see if I wanted to go down and join them for a while and look at their "creations." I decided to take off my hat and go out to get some sun on my bald head. I did put on sunscreen first, and I wore my sunglasses so I could go incognito. David carried some beach chairs from the cottage and I brought a book to read. It felt quite liberating to go out in public with a bald head. It was a big step for me, but gradually I am becoming comfortable with the fact that I have no hair.
When we got home, I had my oncologist visit the next day. Elaine drove me up and David was also there for the doctor visit. He explained the same thing as he said on the phone, that the tumors were growing again and we needed to change medication. He gave me some instructions and a short exam, then I moved on to the chemo room. The new drug, Doxil, doesn't take quite as long as my old medicine, but they had to drip it slower than usual for the first dose, to make sure I don't have a bad reaction or anything. Elaine and I chatted most of the time. She has been having some health issues and has not received a clear diagnosis yet. She called me today and mentioned that her doctor recommended surgery, so it looks like her problems aren't over yet. At least she can have a degree of empathy for me and all the pokes and procedures I've had over the years.
Today is the day after my treatment and I haven't had any side effects yet, just fatigue, so I took a 2 hour nap before the boys got home from school. My parents are coming this weekend, so I am looking forward to seeing them. Thanks, everyone for your prayers and service to our family. I promise to write more often, now that we are home. I just didn't want everyone on the internet to know that my house was empty for 5 days. Bye for now,