Justin and his best friend there!

I was like a kid!

They were so excited they were the only kids and had Santa to themselves!

Colton kept trying to pull on his beard!

Devon's first time building a snowman!

My little snow Angels!

Justin turned 30 and you can see how happy he is about it!

Snow Princess!
We got a foot of snow in one day!

Going to be a Great Year!

I can feel it already! I probably should catch up on all that has happened, but today's news is too important to me, so I must share! Today I got results from my PET scan, this is the big one to see if the IL-II treatment worked or not and if I'll be doing it again. The results came back GREAT! Not perfect, but great! Most of my tumors have shrunk! Yay!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I am so elated, it's hard to explain! So. there are a couple stipulations to my happiness, first there's still a couple tumors in my lungs that actually got a little bigger (they are still no bigger than a pencil eraser), but Dr. Akereley dismissed them as probably swollen from previous treatment. He also dismissed them because all the others were shrinking and the areas didn't absorb as much glucose as they did on the last scan (the glucose goes where cancer cells are). This is still really good news. My second stipulation is that I will be going back into the hospital on Monday for five days and out a week and back in a week. Just like last time. Round two here we go. I know it will be hard again, but I will have a much better attitude this time knowing it's now experimental and that it's actually working! I couldn't be happier. The chances of this treatment working are pretty slim, so I say thanks for all the prayers and fasting in my behalf because it worked! We picked the right treatment and I am so glad I didn't start with the clinical trial. Also, our nurse up there, LeAnn said she went to a Melanoma Conference in Florida before Thanksgiving and they are going to be setting up places that have it similar to Huntsman where they work in teams and just for Melanoma. They are saying that IL-II is the most effective treatment for melanoma and that they will be using it more now. Dr. Akereley is still learning about IL-II, mostly from watching me and will be observing a lot this next round. I think he wants to be more involved in it in the future with more patients, especially after seeing good results today!
The only other bad/good part is that I'll be spending my birthday in the hospital (the 22nd), bad cuz I'll be in the hospital and also good because I am in the hospital and the treatment is doing good things for me!
As a side note, we had an awesome Christmas and the kids were spoiled, mostly by grandparents. I will post pics maybe later when I have time. We also had Santa stop by on the 22nd to give the kids presents to tide them over till Christmas! They thought that was the neatest thing ever! Santa even made Justin and I sit on his lap! I was afraid I was going to hurt him and then Justin didn't care and totally sat on him. I'll get those up.
I also had surgery on my eye the Friday before Christmas. Nothing major and I was feeling better pretty quickly.
We also celebrated Justin's birthday right before Christmas. Lots of busy times!

Lots of Crazy Days

This week has been pretty nuts and very full days. On Monday (last week) I went into my doc up at Huntsman to see about getting a stitch in my eyelid taken out. It's on the inside holding the weight in my eyelid in place. The weight helps me close my eye because the nerve is not there anymore. So, I got there and my doc decided we'd have to remove it surgically and not in office as I had hoped. He told me he could get me in on Friday. So, on Friday(the 19th) we got up to Huntsman at 6:30 a.m. with my surgery at 9:15. Around 9:30 we started asking what was taking so long. They told us there was a scheduling problem. Some new lady had scheduled a 5 hour surgery for only 1 1/2 hours. So, we had to wait about 4 more hours. Dr. Bentz came in and vented his own frustrations with the situation, but was nice about it too. We told him it wasn't his fault. Justin of course was getting frustrated waiting too. They finally came and got me around 1:15 and I was under for 45 minutes. Justin told me that Dr. Bentz didn't find a stitch as we thought, but the weight was sitting crooked, so he made a new pocket for it and put it back in. I woke up in more pain than I had anticipated. They also gave me Phenergen for nausea which knocks me out for a good hour every time. They did it twice. We finally left around 5 and it was snowing hard. We would normally have a one hour commute, but it took 2 hours! I was sleeping most of the way home, but was afraid I was going to throw up in the car, yuck. Luckily I didn't. I came home and went straight to bed and slept till Saturday morning.
For Christmas, Justin's mom got us tickets to Body World. We went Saturday morning. It was amazing seeing our bodies like that! I'm still thinking about it today. It made me realize how fragile our bodies really are and how all the things we put into our bodies really affects them. The smokers lungs for example were crazy. Most of the models had smokers lungs if you looked carefully too. I still am a little disturbed by the whole experience, but it was a good one. I got to see what they took out of my cheek and all the muscles and tendons and parotid gland that they took out. That part was crazy!
Saturday night I threw a party for Justin's 30th birthday with a few neighbors and a few friends. We had a big turkey dinner. If it wasn't for Devon, I would have had to cancel. She saved me! I came home from Body World and crashed, I slept most of the way home too. I still had anesthesia in my system.
Sunday we had Justin's family out for dinner to celebrate Justin's and his brother Brad's birthdays. We had a blast and Justin actually lost at Trivial Pursuit! He's such a gamer for trivia games. I for one am very bad at them! I'd rather play cards any day!
As we are getting ready for Christmas around here, and all the snow falling this morning, we are reminded of our Savior's birth. I am trying to teach my children about the giving of gifts and not the receiving. I think it was Friday night we got doorbell ditched and someone left us some money in an envelope and it said it was from the Lord. Wow, someone really will be blessed for thinking of us this Holiday season! The bishopric and Relief Society Presidency and a couple people I didn't recognize came caroling to our house last night. It brought me to tears, that they would go out in the freezing cold to sing about Christmas to us! The spirit was really strong and gave me goosebumps! What a sweet ward we live in with members who put others above themselves!

Getting ready for Christmas

It's already feeling a little hectic around here trying to get all the shopping and things done for Christmas. Don't get me wrong, I love this time of year, it's just a little stressful. I haven't posted anything for a while because it is just my normal daily routine for the most part around here.
We get to find out today if our Utes go to New Orleans or Phoenix for a bowl game. We are hoping for Phoenix because it is a slight possibility we could go. Slight.
We went to a work Christmas party for Justin's work last night and then decided to skip out on the game part with another couple and went to see Four Christmases. Funny movie!
Luckily for us, the interest rate has gone down on the housing industry and Justin has gotten a few calls on loans. This will help us pay off some of our medical bills and ease things a little bit. We were starting to get really worried we'd have to sell the house (if it would even sell). Why does one trial always follow another? It seems to never be just one thing for us. If you've known us very long, you know we've been through one thing after another that keep getting harder and harder to get through. I think back though and if we hadn't gone through any of our other trials, I don't think we'd be strong enough to get through this one.
Another hard part for me is that I can't really get out much, socially. I am not supposed to be around big groups which makes me feel a little closed in, but I love being home with the kids so much, I guess it's a trade off.
For the most part we are doing pretty well. Just getting by and awaiting New Years Eve for my results.

Follow up Appointment

I went up to Huntsman for a follow up appointment today. I knew beforehand that I would have labs drawn (blood) before my appointment. What I didn't know was they had scheduled me for an x ray of my lungs. As soon as they said that I started getting scared. That meant I would find out either good or bad news today and not "just" a follow up as I had thought. That meant that if any of my tumors had grown or shrunk they could most likely see that. After my labs and x ray I met with one of the residents and of course he had endless questions for me. I was asked mostly about what symptoms I am still having. I then met with Dr. Akereley. He said everything looks good in my blood, and then my x ray- all the fluid is out of my lungs, which is what they were looking for. If you remember, I was sent home from the hospital with it in there, and they wanted to make sure it was gone. He said all the stuff that the IL-II had induced upon me was gone and I looked good. He said that he wouldn't comment on my cancer until after my scan in December. I asked if there was any noticeable changes in my lungs and he said no not at all. In fact he said he thought I would have a really good outcome from the IL-II. Let's hope! He also said that he would report his findings with me to Dr. Bentz(my surgeon). He said Dr. Bentz likes to keep an ear out and keep tabs on how I am doing. It's nice to know that he cares about me! They are all so good up there. I also ran into Dr. Bentz nurse Joyce! She said she's been thinking about me the last couple weeks and was going to email me and then there I was! It's like family up there. They take care of me and everyone remembers my name even!

I am having a small Thanksgiving at my house tomorrow. I just finished making a couple pumpkin pies and will be making two more kinds shortly. My oven will be taken over tomorrow. I am so excited to spend the day with my family. That's what it's all about. I have always loved the holidays and family time!

I talked to my nurse a couple days ago and she confirmed my suspicions. I've been having so many symptoms, mostly tired and a cold just hanging around forever, and she said the treatment continues up to 2 months out of the hospital. Duh! She probably told me this, but my mind was so weird that I probably didn't remember it. She also said that my immune system is really low right now and to continue being careful of sickness. She said stay away from big groups of people, especially church. Dang it! I've been wanting to go back.

On another note, I am all ready for Thanksgiving! I finished my shopping today. I split my shopping into two so I could get two turkeys. I had to spend $25 and get a cheap turkey. Sweet! I am excited to relax this next weekend. This weekend on the other hand there will be no relaxing! It is time for the Rivalry! The Utah vs. BYU football game. I am so excited I can't stand it! If you know me well, you know who I root for, If you don't, I wear lots and lots of red! I know it doesn't make sense with a brother and sister that both graduated from the Y, but maybe that's part of it. I'm the black sheep of the family, right? At least I was as a teenager! I've tamed a bit.
Anyways, I am well and enjoying the kids and this holiday season! I can't wait to put up my Christmas tree next Friday. No black Friday shopping for me, at least not in the morning. I'll be too busy decorating and listening to Christmas music. Yay!

Kids Pictures

It's been a while since I've posted. Probably a good thing. I am doing pretty well. I got sick with a cold this weekend, which makes me wonder why I go out in public at all. I guess it could have been Brooklyn bringing it home, too. Who knows. All I know is when I get a cold, it hits me extra hard. All my glands are already swollen, so they get super sensitive. Yuck. I am feeling much better today though. I have a busy weekend coming up. We are celebrating Brooklyn's 7th birthday and she has invited 16 girls over. It's gonna get crazy here!
I am feeling pretty good most of the time. It hits me mostly at night. I feel tired and my neck aches. I am still making it through my days. I don't have all the energy I am used to yet, but I am trying to be patient. I've been wanting to go through some cluttered areas in my house, but again, either the drive isn't there, or my energy is still low. Not sure. I do have an unexplained weight loss, which makes me a little nervous. I feel like I am constantly eating and constantly hungry. We aren't sure if this is a bad sign or not. Have you ever noticed that a lot of cancer patients are super skinny? I'm not there yet, but still losing. We wonder if it is the treatment still working in my body or if that has worked its way through my system yet. I guess I have some questions to ask. Also this weekend I got scared because the tumor on my rib started hurting really bad. To the point where it hurt to breathe. Now I think it was related to my cold for some reason. It only hurt when I was sickest. Now that I am feeling better, it's not hurting more than it used to. My body is weird.
I am so grateful for all the help these past weeks! For all the meals and service in my behalf. Everyone is so genuine and caring!
Oh, last week I met with a lady from the burn unit up at UofU Hospital. She was so sweet. One of my nurses from my last hospital stay set it up. I had told him that there is no support group for me up at Huntsman, and he mentioned this lady. We have two totally different situations, but it seemed to work. We both have struggled and are struggling through some similar situations, fear of going out in public, and dealing with kids through hospital stays and all their emotions. She made me feel good about myself and helped me know that I am a strong woman! I usually have good days, self esteem wise, but there are also days I don't want to go out of the house. On my good days, I don't notice anyone looking at me weird (mostly kids look), but on bad days, I think everyone is looking. My head gets kinda messed up sometimes. I know it is Satan trying to pull me down and make me feel bad about myself, and you know what, sometimes it works, but I pull myself right back on top again.
This whole thing has been such a struggle for me and my family, but I know that we are so much closer for it. We have reminders all the time of everything we have been through. They aired a documentary on PBS last night about Justin's Marine group that went to Iraq and how hard it is for them to adjust back to life in the states after. It focused on four guys that Justin knew very well. It was hard to watch because we know that they are all struggling. We did extensive interviews years ago for this documentary, but the director decided to go a different way. We were in the film for a short second (Justin, Brooklyn and I were at the park swinging Brooklyn) and pics of Justin in group shots. It was neat to see, but also sad.
Any ways, I've dragged on long enough. I'm sure I'll post pics of Brooklyn's party and celebrations after this weekend!

Central line came out

Yesterday I went to get my Hickman central line out (the thing that all my meds went into). I decided I have been through enough and went for the sedation they offered. It was painful enough going in without sedation, I didn't even want to know what it felt like coming out after 5 weeks of being there. I waited an hour and a half (they were running behind) and they finally were ready for me. It took them four tries to get my IV going for the sedation. I wasn't sure what was worse at that point, another try at the IV or forgoing the sedation. They finally got it and I was given meds. I had the same doctor that put the line in taking it out. He recognized me because not many get it put in without sedation. He asked me how bad it really was. I told him the worst part was the lidocaine shots. Also the tugging and pulling and shoving at my chest was unpleasant! I am very very sore today where the line was which makes me glad for the sedation. They had to go under the skin and loosen it up to get it out. Ouch.
I am excited to watch the Utah vs. TCU game tonight. I am a bit nervous for the outcome. If Utah is gonna lose a game, this will be the one. I hope not. The Utes have been so good all season and are a really good team. Let's hope for the best!

Halloween

This picture turned out kinda freaky. We kept playing with the flash to try and get it just right. He had fun scaring all the teenagers and parents out there. We had a family look at our porch and walked right on by (they had small kids). I ran and gave them some candy cuz I felt bad. Justin had a lady who saw him and ran home and get her kids to show them. He created a lot ofbuzz. He had a lot of fun and lives for Halloween!

Devon, Justin's cousin who is living with us, and the kids.

Brooklyn, the beautiful tulip fairy! She looked so pretty! She loved having makeup on too.

Justin did his pumpkin same as last year, but was a big hit. It's the one throwing up. Last year when we took a picture like this two days before Halloween, I went into labor with Colton a couple hours later!

You can't really see my costume, I was a renaissance lady. First time I've dressed up in years. I had a lot of fun.

I helped in Brooklyn's classromm for their Halloween party. I was in charge of the treat. I had them frost cookies and put candy and sprinkles on. They sure know how to make a mess! They all had so much fun and were so hyper!

Justin took pride in decorating our front porch. He even put in black lights and had scary Halloween music and sounds playing all night

There she is! She was so excited to see us! She was the last class of the entire school parade

We were waiting at Brooklyn's school for her to come in the cafeteria in the Halloween parade. Colton was having fun with Grandma.

I took the boys into Grandma Adele's work for lunch and trick or treating on Thursday. Wyatt hauled in on the treats for sure!

Colton's Birthday

So cute! He loved opening the presents

Colette was helping!

He just wanted to eat the wrapping paper. So funny









Ok I thought I would be brave and post this pic of me and the kids at the hospital. Check out the IV pole and how many machines it took to keep the meds going. I think two are cut off on the left too.

Great Day

I love posting that I had a great day! It's been so nice to have the kids all to myself today. They have gotten lots of extra hugs and kisses today! I did squeeze in a little nap this afternoon while Colton was sleeping and I put Wyatt next to me watching cartoons. I feel pretty good though. Nice to feel that way and nice to say it.
My blood test on Monday came back and they kept me on the same antibiotic, which means it is working. That's probably why I am feeling better too.
Tonight we went and got a few Halloween decorations and pumpkins so we can carve them hopefully Friday afternoon. Justin should be home early afternoon, so we should hopefully have time. It will be a busy day. I will be going to Brooklyn's school for the parade and then helping in her classroom for their party in the afternoon. I was put in charge of the treat (I offered to help). I am excited. We got a bunch of the cookie decorations tonight too. Then Justin's work is doing a trick or treat and then of course trick or treating at home. Justin will be on the porch scaring all the kids wearing a Michael Myers costume (sorry in advance if you live in our neighborhood!)
He even bought black lights for the porch! Don't worry, he takes off the mask for the little kids so they aren't scared.
It will be a good week, I can already feel it!

I am starting to feel a lot better. No more nausea which is awesome. I am still feeling a bit out of sorts in my head, but it is getting clearer. I had a blood draw this morning to see how my staff infection is doing. I should find out tonight if my dose changes and where it's at.
This week is going to be kinda busy, so I might not post as many blogs. If I'm not posting blogs, it's probably a good sign that I am busy with life and with the kids. I'm sure I'll be posting pictures of the kids for Halloween and Colton's birthday which is on Thursday.
I know many have worried this past week when I haven't posted that something is wrong. It was probably that I was tired or just was glad to be home and enjoying the kids.
I am so grateful for all the prayers again this past week and that I am now home and can feel better and enjoy life for the next 9-10 weeks. Thank you!

Came Home Early

I got to come home yesterday. They decided not to give me the last dose because of the heart palpitations and because I was developing a cough from the fluid in my lungs. The cough was constricting my airway and making it hard to breathe.I ended up only getting four doses. So when I got home, I started getting a very familiar headache (same as last week). We thought if we hurried and set me up on IV fluids, it would go away. Last week we thought all the symptoms I had were due to dehydration. I'm not so sure now. We tried to get me some nausea medication quickly, knowing me. As we were hooking it up and about to put some in my line, I threw up. We battled getting enough medication and throwing up seven times by the time we got it right. I also had a home health nurse there trying to help us figure out why I was throwing up so much. He couldn't figure it out. I remember throwing up 3 times while he was here. Finally we got some antinausea without pain meds to just put me to sleep. Who cares about a migraine when you can't take anything, right?
I woke up a lot in the night to go potty and with my head hurting. I didn't dare take anything for fear of throwing up again (or dry heaving). I gained a total of 20 pounds this time, but I won't take any Lasiks until I know I have enough fluids and I am at least eating and drinking. I think that was part of the reason I was up so much last night, my body was naturally starting to get rid of the extra water weight.
This morning I felt a bit better. I am still very weak and can't do much. I am on my second IV just so the dehydration doesn't happen again, I already did an antibiotic for two hours this morning for my staff infection, too. That will be twice a day until Nov. 4th.
I will say that it is so nice to be back in my own bed and at least home with my kids. They seem really content having me here.

Might be going home, might not.

Last night I got my fourth dose. My heart started having some weird palpitations, beating really fast and really irregularly.It felt like my heart was going to come out of my chest. This morning they told me I won't be having any more IL-II doses today. To me that was kind of a relief. I have had a pretty good day. Although for my visitors this morning I felt bad for my visitors because I had Phenergrine for nausea that knocked me out cold. After that wore off, I had a good day. I felt pretty with it. Yesterday I had some blood drawn and it showed I have a Staff Infection in my central line. I will come home with my line still in to take antibiotics for it. To me it sounds better to take it out and then clear it up. Oh well they know what they are doing.
This week has been a harder week until today. My doctor told me that every dose gets stronger and stronger. No wonder I've been sicker this week. I've barely even wanted to look at a computer.
The kids have been sick throwing up this week which makes it worse for me. I just want to be home with them. Brooklyn broke down at school while they were reading. She missed her mom. This made me cry when I heard about it. Wyatt has called alot because he misses me.
We are so grateful for the outpouring of support in our behalf. It has been overwhelming for Justin and Devon to try and figure out times and when you can help. I think once I am home I will be able to accept meals and cleaning.
Thanks to everyone for everything you have done! Love to all.

This week is rough

I kinda thought it would be easier this week since I already knew what to expect. So far it has been hard. On Monday I got my first dose at about 5:30 and by six thirty I was having fever, chills and bodyaches. I stayed up the majority of the night like that. I slept a bit of Tuesday, but for most of Tuesday I was naseaus and sick to my stomach. I finally slept most of the night last night. My parents came in to visit last nigh and my aunt Jeanne anf Justin came to see me too.
Yesterday was kind of a blur. I don't remember much.
This morning they got me up at 5 to give me meds and to weigh me, I'm up six pounds already. I didn't get a dose last night, but got one at ten this morning (my third dose). I am feeling ok so far today. I got a shower this morning, and now I am missing my family so much. I keep crying a lot. My kids will be coming in this afternoon. I can't wait

Good Weekend

It's been nice to have some of my energy back this weekend. I did tire out quickly with some of my normal daily routines. Just in time to have some energy just to have it zapped again starting tomorrow. I spent the night at my parents celebrating my mom's 50th birthday (she won't appreciate me writing that, I'm sure) and Colton's first birthday which is on the 30th. I admit it was really nice to see family tonight.
I'll admit I am a bit depressed having to go back to the hospital again so soon, but the sooner I finish this week the sooner I'll have all my energy back. I am again worried about my kids, though I know they will be well taken care of, it's not me. I know I will miss them so much.
I will try to keep my blog updated as I go this week for my treatment. Let's hope it goes as well this week as it did the last time.

I am feeling a lot better now, just get tired pretty quickly. I promised Joan from Huntsman I would drink and eat more this week to get my strength up for Monday. She's been checking up on me the last couple of days. Last night was so nice, I slept the entire night! Brooklyn is out of school till Tuesday and we all slept in till 9:30! I was so excited for sleep. The only problem I am still having is that darn low grade fever. Other than that, just my energy levels.
I've lost all but the last two pounds of the water weight I gained. I still can't believe I could gain 21 pounds in 5 days! Let's just say my skin is paying for it! Very dry.
It is so nice to have my mind and head straight again. It felt like I was in a fog for so long. There was so many parts of the hospital I couldn't remember until the last couple days. Even visits from family and friends were very blurry. It was very strange, dreamlike.
Tonight I am planning on having fun at Bunco, a game I play with 11 other women and have a blast doing it! I hope I have the energy! I'm sure I'll run on adrenaline or something like that. Costumes are optional tonight too! We'll see.

Yesterday started out ok, but I was so tired from not sleeping much. Luckily Adele (my mom in law) came over and helped. As the afternoon came, I got more and more nauseous and couldn't eat or drink. We decided I was extremely dehydrated and needed IV fluids. I've dropped 15 pounds of the water weight I gained in the hospital, too, which I think made the dehydration and nausea worse. So, by about 9 last night we had a homehealth nurse come out and show us how to hook up an IV to a central line. It didn't seem too difficult. I got IV fluids and as soon as Justin gave me Phenergine for nausea, I was out in seconds. I slept till about six thirty this morning and woke with a fever of 99. Took some ibuprofen and went back to sleep till eight thirty. So, today I am feeling pretty good, so far. Yesterday started good too, so I am hoping it keeps up this time.

A Night in the Emergency Room

So I came home yesterday and was a bit dizzy all day. We went and picked up prescriptions and came home to rest. I took a small nap. When I tried to go to sleep last night I couldn't. I had a headache all day that ibuprofen didn't even touch. As it got later I tried a Lortab 10. Strong, right? Barely worked for like 20 minutes. I ended up nauseas and running from bed and throwing up. I threw up the only food I'd eaten all day because the sores in my mouth were too bad to eat. I had taken new meds and threw all that up too. So, come two in the morning after trying to sleep on the couch, so I could breathe because of the fluid in my lungs, I woke up gasping for air and having a panic attack. I had several delirious dreams and then the throbbing in my head was so strong and it sounded like water swishing in my head I thought for sure I had extra fluid in my brain because I had extra fluid retaining everywhere else. We called up to Huntsman and talked to the Dr on call and he said to go to the E.R. and they'd probably do a brain scan and admit me. Just what we wanted to hear. The only reason they said it was important to go in was because meds just weren't taking any pain away.
When we showed up to the er, they took me back right away and started asking a lot of questions, which my history takes a while. They asked all the meds I've been on, I had no clue all the drugs I had this last week. I only knew what I'd had through IV. I told him about all the water swelling and one leg looked more swollen than the other, so we did an ultrasound to check for blood clots, a head CT, a chest xray (because of the fluid in my lungs, he wanted to check to see if it is still there. So, long story short, everything was fine, thank heavens. I am still suffering from the headache which we think is my body's reaction to Interlukin.

Coming Home today!

I am excited to come home and lay in my own bed! I feel huge. My weigh in this morning was a total of 21 pounds! I am so gonna die if that doesn't come off! They say it's all water weight and they will send me home with lasics and it should come off in a couple days. I really hope that holds true. The man next to me doing the same procedure has gained about the same. I told Justin this morning and we both had a goof laugh.
They took me off the iv fluids to see if my blood pressure will stay normal, if so all I will have to do is wait for discharge papers and stop by the pharmafy and I'll be out of here!

Friday

So, today was kind of a good and bad day. I had insomnia and was up all night last night. Even with sleeping pills and pain pills and nausea pills. They say is was a side effect of the IL-II. So this morning around six they checked my lungs, which they do several times a day and blood tests. They found fluid in my lungs and a low white blood count, meaning infection somewhere in my body. The fluid built up in my lungs because it is building up everywhere. I am up 15 pounds in fluid retention. It feels so gross.I just feel really bloated.
So, because of those two things they had me do a chest x ray to make sure there was fluid in my lungs. There for sure was. So, they didn't give me my dose of IL-II this morning and stopped it altogether. So I didn't make it as far as I was hoping, but I make it to 11 doses which most barely make it to 9 or 10, plus they couldn't get over how well I dealt with it.
Because my lungs are filled with the fluid puts me at a high risk for pneumonia.
They told me I absolutely can't be around groups of people, so church is out. I think it's a good thing I will be coming home when it's cold and I can just stay home. I had several visitors which I made sure weren't sick. So, I should be coming home tomorrow afternoon and will still be tired. I am so excited for my own bed for sure!

ok, here's a little later Thursday

So, My aunt Jeanne and I are counting how many bags I am getting meds dripped through. There are eight bags, with six dripping. I have six little pumps and 2 big ones that are dripping through the lines. I have IL-II dripping, dextrose dripping, sodium chloride, norepinephrine, potassium phosphate, dopamine, magnesium sulphate, and potassium phosphate sodium chloride in one bag.
My pulse looks good, my blood pressure is good because my meds are keeping it above 90/50. I've seen it drop to 83/48. That's when a nurse runs in and sets the drip to a higher speed.
My mouth is full of canker feeling sores and to be able to eat anything or swallow any pills I have to gargle lidocaine. Gross!
I felt so good last night I got a shower! Today I have too many lines and am too tired to get a shower. I am more awake than I was Tuesday, but still tired. I just had my tenth dose of IL-II. Which is where most people make it to. Only two patients in ten years have made it to the 14th dose. It's looking like I will. It just means my body tolerates it better than others.
My mom is bringing my kids in any minute now. Wyatt called me earlier and told me he misses me and loves me. Of course that made me cry. I'm done tomorrow at midnight tomorrow night and will be coming home Saturday or Sunday as long as my blood pressure is under control

Wed night through Thurs Morning

So yesterday I had absolutely no problems! I even had my bro and sis and my bro's family out. Also, Justin showed up. I think they were all amazed at how well I was doing. I was. I didn't think I could have such a good day after having 2 really bad ones. . Last night I was good. I had my eighth dose of IL-II at midnight. I started having insomnia, so they gave me some sleeping pills. At about 4 in the morning, I woke up with nausea, fever, and chills and couldn't sleep. They gave me all kinds of meds again. They said it was the IL-II affecting me. It usually gets to me about 4 hours in. This morning I am feeling pretty good. My lips are bleeding from being so swollen and the sores in my mouth remind me of radiation. Ouch! Also, I have put on 11 pounds of water weight. Yuck! It will come off fairly quickly once I am off this stuff. They'll send me home with a pill to help get rid of it.
Last night Justin showed up with a signed U football from Coach Wittingham that says "Michelle, Wishing you all the best and the Uted are pulling for you. Kyle Wittingham." How awesome is that. He also signed a bunch of posters and gave us 5 hats. How awesome. Heather at Justin's work set it all up, so Thanks Heather!
I am hoping to have a better day again today. I hac my 9th dose of IL-II this morning. Only 2 people in ten years have made it to 14. Most don't make it past ten. The 61 year old guy next to me doing the same treatment who started the same time as me has already had to skip a dose or two. They say it has a lot to do with my age that I am tolerating it so well. I'll write a little later depending on how I am feeling. Thanks

Third day

I'll talk a little about Monday night and yesterday. From what I can remember. On Monday after I posted my new post, I could not stay off the toilet . My stomach was cramping horrendously.
On Tuesday, I was nauseous most of the day. I ended up throwing up a couple times. I finally ate a little, but my kids were here and ate the rest. I was ok because I was still sick.
I've been able to have some visitors which has been nice to help pass the time.
So, today has gone pretty well. I don't remember much about last night. I think I zonked at six and didn't hear or see anything till ten. Justin was supposed to come in, but my parents told him how out of it I was last night. I guess I got a few phone calls and didn't hear them.
So, I can tell that my mind isn't working as well. I have put on 5 pounds of swelling, mostly in my legs, hands and face. Not horribly noticelable. Overall I feel pretty good today, just tired. I am a little surprised how good I am feeling!

Getting a LIttle Cloudy

First Day Down

I got up this morning and was all ready by nine, when they told me to call to see if my room was ready. They had me call back an hour later and then two hours later. They finally ended up calling me around 1:00. My room was ready.
When we got here, I found out my nurse was Becky, who came in and gave me a big hug! It makes it so nice to have a friend up here. She is so sweet and always takes good care of me. She has been my nurse for the last two surgeries. We have been emailing since April.
She's been so helpful and great! Also, my aide from my last two surgeries, Brad was here and stopped by to say hi. How fun!
So, I got to meet Dr. Agarwal a couple hours after being here. Justin came up with me and had the day off. Dr. Agarwal talked to us about what to expect and told me I should start feeling side effects by morning. Some feel it sooner. I got my first dose of IL-II at 6 tonight. I will get a dose every 8 hours as long as I am tolerating it well. They watch my blood pressure very closely. This medicine makes my blood vessels leak fluid and makes my blood pressure drop. I will swell up because of it. As soon as I am done with treatments this will go away very quickly.
I take my last dose on Friday night (I thought it was a 7 day week of treatment, turns out to be 5) and should be feeling good enough to come home Saturday or Sunday.
They warned me that I could be feeling sleeplessness, which I am. I feel kind of wired, even after a shot of Demorol, which I think wore off after a couple hours. They have preordered all kinds of meds for me like sleeping pills, nausea pills, pain pills, fever and chills meds and much more that I can't remember.
So, my first day down and counting down to waking up feeling bad. Till then...

So, last night I was up till one in the morning getting the kids schedules in the computer and printing them out. So much to do! I feel like I am going crazy trying to remember everything. I'm sure between Justin, Devon, my mom and mother in law and neighbors everything will go really well. This morning I put together some meals and put them in the freezer for this week. I am just trying to get all the last minute stuff done. It's a bit overwhelming and at the same time, I am trying to just relax and enjoy my kids. I am trying to figure out what I'll actually be using in the hospital, if I'll even feel up to showering or getting dressed or if I'll be a bump on a log all week.
I am taking the laptop with me in case it works and I can update at the hospital. My phone if I remember correctly in the hospital only dials local numbers. So, anyone with Utah county numbers will have to call Justin if they want to get the number to reach me.
I am getting pretty nervous. I wish I knew for sure how I will be feeling, how soon into tomorrow I will be feeling it, and how bad it's gonna get. It's this or the alternative. That won't happen. I am beating this thing no matter what I have to go through!
I am grateful for all the prayers and well wishes from everyone! Your support helps so much. I think one of the most important parts of getting me through this is having a great support system, which I have. I have the most supportive and loving family and friends. It's sad that it takes something like this for all of our good sides to really shine. In Conference yesterday as Dieter Uchdorf (sp?) spoke about Hope, he said one thing that hit me like a rock. He said "Never allow despair to overcome your spirit".
I recieved a father's blessing last night for the comfort I truly needed. The words were inspired and just what I needed to hear. Many blessings and promises were made to me. I know my Heavenly Father has sent down angels to be here with me and help me through this!
He is watching over my family as I am away, which gives me the peace to get through. As a mom, my first concern is my kids and husband. I know they will be taken care of and loved as though I were right there with them. Thanks to all who will be helping this week and for the outpouring of offerings I have recieved for help.

Almost a regular day

So, I did my pulmonary test up at Huntsman today. It seemed to go really well, except for the part that I can't blow air out past like ten seconds. Not sure why, but that shouldn't affect anything. I am still scheduled to go in on Monday. I will call Monday morning to get my room number and a time to show up. It will most likely be between 10-12.
I've talked to Justin and he will either bring the laptop up to me at Huntsman, depending on how I'm feeling, or I will show him how to post new blogs for me.
That way I can still keep everyone updated without a ton of phone calls. That gets very overwhelming for him. Those who will try to call me might get Devon (my cousin that lives with us) because I will be giving her my phone for the week. It won't get reception in the hospital anyway. I will most likely post my room number so you can call me if you want to. I'll only do that if I am up to taking phone calls.
For now I am just trying to figure out schedules with the kids. I am hoping I feel well rested when I come home. I doubt it, but you can always hope right?

Finalized Plans

So, today was about the craziest day ever! It all started with a phone call from my nurse LeAnne who is Dr. Akereley's nurse. She set up for me to get my heart test done at the new IMC hospital on 5300 south. So I got on the phone with my new insurance which had changed to make sure I am covered at the IMC and Huntsman. I am so glad I called because they had to enroll me in their cancer program so I'll be covered at Huntsman. Otherwise they would not cover me there.
Then I got another call from LeAnne asking if I can go up to Huntsman right after my heart test and get an IV and then a central line put in (goes from the vein next to my carotid artery by my clavicle and a catheter goes straight to my heart and will disperse the medicine from there). So, I then had to arrange Brooklyn a ride home from school, get packed for the day with the boys and pick up my mom because they told me they would sedate me for the central line.
So, I am for sure going in the hospital on Monday the 6th, so really quick. Which is why I have to hurry and get all this testing done. The reason they did the central line today and I have it in over the weekend is because they were completely booked and couldn't fit me in to get it done. These are made to stay in long term so no problems keeping it in over the weekend.
I will be doing the pulmonary test on my lungs tomorrow up at Huntsman.
So, today was nuts and on top of it all, Colton wasn't feeling well. I made it to all the appointments on time. The heart test was on a treadmill and when I was done they said everything looked normal, but they would let my doc know my results. The IV went like a normal IV would. When I went to get the central line put in, they found out that I had eaten (I didn't know I was supposed to fast till after I ate a banana this morning) within six hours of being there. So I couldn't get sedation for the prodedure. Ouch is all I can say. They used lidocane shots which was the worst part of the whole thing. After that and when the Fentinyl (sp?)(pain killer) kicked in , I was ok. As soon as I got to my mom's, it started bleeding and I had to put pressure on it. It still hurts!
So, tonight we went to the Utah vs Oregon State game. It was soooo much fun and such a stress reliever to an exhausting day.
Let's just say I am glad today is over and I can finally go to bed (it's 12:40 at night right now)

When is a good question

So, as you can see we had a busy weekend with Wyatt's birthday, but it was so much fun! I was shocked that as an adult I could actually have a good time at Chuck e cheese.
So, today was the big day with Dr. Akereley up at Huntsman. I went up early and did a blood draw that he had requested me to do. When we talked to him about the decision I made for my treatment, he was all for whatever I wanted to do. He went over the cons and pros again, Justin was there this time and wanted to hear it briefly, of all the treatment options. I told him I am pretty set on doing the Interlukin II in the hospital. He agreed that this is a good option for me as I am young and strong. The only problem is that he's not the doctor in charge of this particular treatment. So, I should get a call tomorrow and set up an appointment with Dr. Agarwal-Internal Medicine. He specializes mostly in kidney, prostate, bladder and then head and neck cancer. He will be the one to administer the Interlukin. To qualify for this treatment I will need to do a stress test on my heart and lungs and make sure they are strong enought to endure this. It will be done on a treadmill. That should be pretty easy for me considering I am on the treadmill or exercising 4-5 days a week. Makes me really glad I've been doing that cuz now I won't have to stress over passing that.
I should hear something tomorrow from Dr. Agarwal's nurse and hopefully get that set up Thursday or Friday and if we can get things done quickly enough, I could possibly be in the hospital Monday. If not, it could be sometime in the next two weeks. I'll keep that updated as I know more.
As far as treatment goes, I have been corresponding with my nurse I've had up at Huntsman in the hospital side, Becky. She works in the Special Care Unit (where I would be) and sees patients who are undergoing Interlukin II. I am thankful for her insight on what I can expect. She told me I'll feel like I have a pretty bad case of the flu including fever, chills, aches, diarrhea, nausea. Dr. Akereley told me to expect to be very tired and my skin will turn a reddish hue.
Becky also said that they check 2-3 times a day to see how I am feeling and to administer more Interlukin or not depending on how I am tolerating it or if I need to recover a little. She said that I will have a heart monitor and lots of IV tubing that will drive me crazy!
I am not sure if I will be up for visitors or not. We'll have to wait and see. I should be in the hospital for 7-10 days depending on how long it takes me to recoop after they pull the plug on the drug. Dr. Akerely says I will pretty much have to be dancing to go home. Basically be able to stand up and not get dizzy and be able to take care of all my normal functions.
That's all I know for now. I'll post as soon as I know more.
Thanks again for all the words of encouragement and love from everyone!

Septemberness, Wyatt's 4th Birthday

I thought this was so funny. He was scared of this present because Tiffany, my neighbor put a spider web and spider rings on it!

He loves balloons! They drive me nuts, but I loved them as a kid too.
Brooklyn had to steal the spotlight! There's Jessica and Grant in the back , Bradley and Devon on the couch and Adele and Grant in the back.
We let him open a gift before everyone got there. He wouldn't stop asking when he could open one. He got this football and he and Brooklyn loved playing with daddy.
Wyatt ended up not wanting to open this card, but it ended up being one of his favorite gifts. It has the Superman Theme music when he opens it!

Wyatt's Dancing!

Here's a pic of Wyatt's boo boo I talked about in an earlier blog.

A few weeks ago I caught Wyatt dancing in Brooklyn's room to a Crazy Frog cd. Here's the video

Here's the link to the video I watched up at Huntsman on the Stereotactic Body Radiation Therapy (SBRT).

http://www.abc4.com/news/local/story.aspx?content_id=D8D008E2-E87A-4326-A78A-BDBF42A54D60&gsa=true

Hope

So, I wasn't sure if I should share or not what happened yesterday. Not sure if it false hope that was instilled or something that can really be done. I went to an appointment, yes another one, up at Huntsman for a follow up with my radiation oncologist Dr. Hitchcock. She said that I am healing well and everything looks good. She was glad I put some weight back on, and said I was too skinny before. She told me about something they are doing at Huntsman and only a few other places across the country. It is called Stereotactic Body Radiation Therapy (SBRT). They can do pinpoint radiation right on a tumor like the ones inside my lung. It would only take 3 treatments in a week to get rid of a tumor! How crazy is that? Also, the tumor in my rib, they could use electron radiation on that for 2-3 weeks and have it gone. Sounds too good to be true and like a quick fix. The only problem with that is we need to get the cancer out of my bloodstream first or it will keep going and we'll keep doing radiation on spots. Dr. Hitchcock recommended doing a therapy first and maybe reconstruction and then to talk to her about it. I emailed myself the video of it that they showed me up there. It was a video clip of the news talking about it. I'll see if I can post it on here from my email. I am not that technologically advanced yet.
Tonight, Dr. Bentz finally called. He was out of town all week. I was so glad to hear a familiar voice from Huntsman as he is my rock of a doctor. He was the first doctor I saw up there (even though I have a team of doctors). I needed his opinion about my decision on my next therapy as I have been given a big decision to make. I feel that he knows my whole situation and what I am facing. After much discussion about all my options and talking from a spiritual perspective, he left it up to me. He heavily warned me about how hard the Interlukin II will be. Obviously pretty rough because of the stay in the ICU. I felt much better after talking to him.

Doctor's Appointment

So, yesterday I went up to Huntsman to meet with my reconstruction dr, Dr. Hunt. I brought up our theory about the spot by my rib. He thought it was worth checking into. We did two needle biopsies. The first was superficial, so they did it again even deeper. OUCH! I think he hit a nerve when Dr. Layfield did it! It still hurts this morning. They both came back looking like scar tissue. I will get the final on that probably tomorrow. So, Dr. Hunt decided to pull up my PET scan from a couple months ago and look into it. He came back and told me there was muscle between the spot on my rib and the scar tissue from the tumor five years ago. Not related at all. So our theory is now out the window and I am sitting in the exact same position I was anyways.
While I was being curious, I asked if he could get the results of my CT scan from Friday. (I wasn't supposed to get results till next Wed with Dr. Akereley) He pulled it up and started reading it. He said they now found 4 new spots in my right lung all 5mm or smaller. The PET scan only showed one 3.5mm 7 weeks earlier. Man that spread fast! Am I getting scared yet, oh yeah. So, after telling Justin, my parents and family (not everyone as it is hard to tell) I went for a girls night with some high school friends!
I desperately needed to get away and not think about it. But on the way home, it was quiet and of course that's when you start to think about things. I got about 5 minutes from home and called Justin and told him I needed a priesthood blessing. We both ended up getting one and were very comforted in our time of despair. I was losing faith fast up till the blessing. We had a long discussion about trials before hand. Let's just say that I now know that the Lord is aware of what I am going through. I know He is always there. We were both made some pretty strong promises and had all doubts dispelled. We were told that angels are around us and keeping doubts out of this house. The spirit was sooo strong. There was no denying it. It's been a while since I've had a blessing. It feels like I've done everything else I can think of. We went to the temple on Saturday night and I fasted two meals on Sunday just trying to get an answer on what I am supposed to do.
To me it is clear now. My choice is pretty much made up, unless my doc tries to talk me out of it, but I feel that I will do the Interlukin II. The one with the most hopital time, but the best outcome.
It's crazy how your perspectives change really quickly. Yesterday morning I was thinking maybe this cancer wasn't as bad as we were thinking it is, and now it's all of a sudden worse that we thought. I can't help but think back to one of my first appointments up at Huntsman with Dr. Bentz. He said the first place the cancer would most likely go if it spread would be to my lungs. Of course we did a chest CT then and it came back clear.
I am just thinking about how precious life is and wondering how much time I will have with my babies. They are everything to me. I will NEVER give up and stop fighting. But if I am playing tug of war with God, we all know who wins. If it's my time, there's nothing I can do, but I will FIGHT as long as it takes!!! I hope it says a lot about my fight by subjecting myself to 7-10 days in the hospital at a time. I am still not sure of how I will be feeling when I will be there. I will let you know how my appointment goes next week when we decide when and where and all the info on my next step of treatments. Until then...

Awaiting a Phone Call

I am not sure what to expect, but Justin and I have a theory I want to run by Dr. Bentz before I make any decisions with Dr. Akereley. I am awaiting a phone call from him as he is out of town.
Our theory is this. Nine years ago I had a mole removed right under my jawbone on my left side. Cancer showed up two years ago in the same area. I had a tumor (benign) removed from the middle of my back 5 years ago and now I have another tumor there (supposedly cancer). Is there any chance this isn't coincidence? We think not. We want to do a biopsy to hopefully prove that this hasn't metastasized. We are willing to be proven wrong and be in exactly the same position they say I am in. So, it is not a risk to us to do this, right? Dr. Akereley saw the tumor in my back and immediately assumed it was cancer spread through the bloodstream. I'm not so sure that is the case. I don't think I will rest easy until I know.
I know it might look like we are grasping for straws here, but I need to know this if I am going to go through grueling and possibly life threatening treatments!

On a somewhat lighter note, tonight we took the kids to Brooklyn's school for the Fair they had to raise money for the school. On our way, Wyatt stepped in front of the stroller and ended up tripping because the wheel of the stroller hit his foot. He fell flat on his face and scraped his forhead, nose, and upper lip. Poor thing, he hit really hard because his hands were full and didn't get a chance to catch himself. It looked like it hurt really bad. He's a trooper, but I know it is hurting him. Not enough to turn around and go home. As long as we kept him busy winning candy and toys, he forgot about it. Brooklyn and Wyatt ended up with cotton candy, candy, and cupcakes. Great night for the kids. They were on a sugar high though!

The response has been huge!

I never imagined that by posting my last blog that I would get so many people concerned. That was not my intention at all! I have received so many emails and comments and well wishes it is overwhelming! I am so grateful for everyone's concerns and prayers in my behalf. This will be a tough decision but the best one will be made! Love to all

Tough Decisions!

As many know, I am fighting cancer and am now stuck in a bit of a tight spot. I tried to qualify for a clinical trial back east, but my HLA blood typing test (tissue typing) came back as the wrong one for the trial or any of their trials for that matter. I haven't posted anything for a while, because I myself have been waiting to figure out what I am going to do next.
Yesterday I met with Dr. Akereley at the Huntsman Cancer Institute. He gave me a few options.

The first being the most effective is the High Dose of Interlukin II, which would add about 5 years onto my life. This would include a week in the ICU in the hospital, a week out, another week in, four weeks out, and another week in. They inject foreign genes into my body that are supposed to fight off the cancer. In doing this, most of my major body organs would be almost shut down for that whole week and then after a few days I would be pretty much back to normal. Then obviously do it 2 more times. Sounds really grueling and out of a scale of 1-4, 4 being the worst side effects possible, my doctor gave it a 4+!

Second he gave me the option of Biochemotherapy. This would include a lower dose of the Interlukin II, Interferon, and a pill (I can't read his handwriting-not sure what the drug is called. Starts with a Tem-something). This would add about 4-5 years and the side effects are rated a 3+. This would entail being in the hospital for the first week, 2nd week would be 3 self injections at home, and have weeks 3 & 4 off. I would repeat this hopefully if tolerable, the rest of my life. He said most patients last 4-6 months and take a break from the side effects and start up again.

Third is something called DTIC (an IV given every 3 weeks) and the same pill I couldn't read his handwriting as before. This would add one year and side effects are a 1+.

Fourth is a clinical trial that would go one of two ways. The computer randomly picks which one you get. Arm one includes taking pills at home. Arm two includes taking one pill at home and a weekly IV. The side effects aren't rated as this is a clinical trial and also the years of life added are unknown. Looking throught the side effects it sounds really similar to the side effects of chemo. Not fun. The drugs in this study are ones they are already using for kidney cancer and leukemia. They are studying this as a secondary cure for melanoma since all three cancers are similar in that they are immune system cancers. The only way I would be able to do this trial is if I do it before any of the other three options. Otherwise I will NEVER be able to do it. The risks seem high and I am still not sure if I would do this first or not at all.

So as you see my decision is a tough one. I am getting a CT scan tomorrow at Huntsman to look at the tumor on my rib to see if it is measurable (big enough for them to see if it shrinks with treatment) for the clinical trial. The only other tumor I had was on my neck and suddenly disappeared! Yay.
I was told yesterday that now that my cancer is moving in my bloodstream it decreases my chances for survival. So I need to act fast on one of these. I have two weeks to decide what I am going to do. Prayers would help!

The reason for this post is to be informal for all those who keep asking what I am going to do next. As you can see this will not be easy. I know there will be a lot of opinions and questions. You can email me any concerns you have. I love you all! Thanks for all of your prayers and putting my name in the temple. All of your support has made all the difference in the world.

California Trip with Dave and Patty!

We drove down in the motorhome (or should I say Dave and Justin drove)

We also went to the Ucla Tennessee game and had a blast

I forgot to take the camera to the game

I hadn't eaten sugar in two weeks! I crumbled and ate a couple bites!

Jenny got a swan! Some were walking out with full on mermaids!

They put Patty's dinner in a foil crab!

We had dinner at Gladstones right on the beach and even had
fireworks right after. They shot them off a barge in the ocean!

Patty, Karen, John, and Justin
(Justin looks so happy!)

Patty (left) and Karen at breakfast

Yeah, not ours but we wished! He did let us drive it though!