Can't fully remember what I have updated, so will just go with what is in my head right now.  Last week went in for first round of taxotere and more avastin, but my platettes were at 50 and they want them closer to 100, so had to wait a week.  Its been really scary, because I can feel the cancer growing in my right lung.  It is really scary and tight so I have been trying to relax and take it easy.  So hard to do. 
I went in today, the platettes were a little better but still low.  But they said it was up enough to go ahead with chemo, I was so grateful, because I know I will breathe better and I don't think that I can handle another week like this.
Please pray that it works fast and that my platettes will not drop too much and recover themselves pretty quick as well.  My poor bone morrow is struggling right now. Just have to watch for bleeding and red spots.

On a great note... the SB 189 Chemo Parity Bill just passed today and is now on its way to the governor for signing.  I am so excited!  To be able to share your story and be able to help all those suffering through this dreadful disease is such a wonderful feeling.  So happy about that.  Nevada even called me, they are having a hard time finding people to share their story so may be doing an article for them here soon.

Atleast if I can help like this it makes going through it worth it.

Please keep the prayers going, I truly feel them, and need them so badly....  Also please send an extra one up for my sweet cousin Kathleen (sure thinking about you girl, call me if you need me)

So i went to the urologist today.  I really liked him and felt comfortable with him.  He actually had some good news for me and that was that, where the stones were placed, made it so he didn't think they should be causing me any trouble.  Well, my back is on fire and and cannot cough because of the pain in my back and chest.  I have been feeling more chest pain.  I am honestly thinking the cancer is just reaking havoc and maybe the cancer in the bones is causing muscle pain or the lungs are worse than we think.  I don't know, I am going in thurs for chemo and will hopefully be able to talk to Haslem for a  minute.  I just hope this chemo kicks in fast as well.  I don't like this feeling, its scary!!

You know things are bad when you are hoping that you have pneumonia.  Well, unfortunately in my case, I DO Not have it, the Cancer is reaking havoc on my lungs. I am back on oxgen and feeling the breathing getting worse, everyday.  Of course it doesn't help that I have a condition in my kidneys now (the name I cannot even attempt) but its basically caused by the cancer in my bones.  My body is working really hard to heal my spine and therefore causes lots of calcifiation buildup in my kidneys.  And its breaking apart causing all kind of stones to be there.  My kidneys are completely inflamed.  Also making it hard for me to cough, etc.  So tomorrow I get to meet a new doctor a urologist.  I am really hoping he can help me, but in a nice and gentle way:)

So new treatment this week.  I now get to go back to IV chemo and take taxotere (a cousin to the taxol I had last fall)  Its suppose to be a little more tolerable, but we'll see.  Its quite the game of trying to figure out what works well, as well as what my body will tolerate.  So for now it will be the taxotere and avastin every 3 weeks.

I had a really good day friday, but as soon as I woke up yesterday, it was all hard. We had a baptism to go to, then went and napped, because I promised Donovan and Bailee that I would take them to the Due West concert in Cedar last night.  Donovan is a huge fan and wanted to meet Tim because I grew up with him and his family.

Luckily we made it and the kids had a wonderful time. We went with Jackson, Angela and Taya.  The kids got shirts and had them signed and got lots of pictures and hugs from the guys and got to reminisce a little as well. It really turned out to be a great night.  I am just paying for it today.  Couldn't get out of bed, and in such pain, but feeling a little better tonight.

Audio

http://utahlegislature.granicus.com/MediaPlayer.php?clip_id=2700&meta_id=75142

Here is the audio to the part I played in the hearing.  I start at about the 20 min mark...

I have been trying to write for a few days so I won't forget, but my dang hands hurts so bad, I can't do anything.  I can't even walk because of my feet, too. Plus a few more side effects I won't mention. Enough Already!!!! I got out for a minute today, but felt so miserable, I have been in bed the rest of the day.
Ok enough whining....Here's the update.

Lets start on valentine's day.  Donovan and Alysa had begged me to come to their parties, so I pulled myself out of bed and went.  I had had a few problems breathing again so I had a call in to the doctor.  When I got in to the car to leave the school his assistant called me and told me to come in, of course by that time, she could hear over the phone how bad it was.  When I got there, we had to have my oxygen levels at a certain rate to get oxygen, so got that done and then he sent me over for a more intense CT scan, can't remember the official name, but it was the same machine they used for my spinal biopsy.  The reason he did it was he wanted to look at my lungs a litte more, but it didn't tell him much.  He was actually thinking more cancer but the pulminologist is thinking infection, but my body is just too weak to try and fight it, hence no coughing or mucus coming up.  So the pulminologist wanted to put me on an IV antibiotic twice a day for a week, but Dr Haslem knew we had a trip planned for up north.  He actually thought we were going up to testify (litte did he know he was inspired) but we told him we just needed a break.  So he gave me 2 pills for a week instead.

So we got the oxygen AGAIN, and loaded up the kids friday and dropped them off in Richfield then headed to Salt Lake.  I made it to the family history center for about an hour on saturday before I got sick and had to leave (dang antibiotics). We got back to the hotel and found that they needed me tues. to share my story at the capitol, because they had gotten the hearing for the Chemo Parity Bill (a bill that would get oral chemo covered under medical just like IV chemo, because right now it is under prescription and therefore my out of pocket monthly for the pills is $1300 and some as high as 20,000) scheduled for that day.  Love Communications, a Public Relations Company hired to help with the bill had asked me to share my story.

Sooo of course Dave and I didn't bring any nice clothes with us so luckily it was a holiday weekend and got some help in bring them to us (you know who you are, thank you!!!) and spent a few days with family. Heck I even put on make-up, that has happened since the fundraiser in November:)

They had pitched the story to the tribune so I knew it was coming and the first one came out on monday-http://www.sltrib.com/sltrib/news/55834474-78/cancer-drugs-oral-chemo.html.csp

I worked on what I was going to say on monday night.  They told me I had about 2 mins so thanks to Deanne, I was able to get it written, it was a good thing, because with my brain I would have been all over the place by winging it:)  It was interesting how things work up there.  It was held in a room in the senate building behind the capitol and quite a few people showed up. We were second on the agenda and the first one went by fast.  No one was even paying attention, so I thought hey this will be easier than I thought, because noone will pay attention to me:).  Senator Bramble is the one sponsoring it, so he said a few words, then it was open to the rest of us.  One guy shot up to one of the 2 chairs and the other was empty so the ladies I was with told me to head up there.  Honestly I think that was Heaven sent, because if I would have had time to think about it, I wouldn't have gone, AAHHH crazy.  But I did it!!!!  I introduced myself and read my story loud and clear.  I even got Dave to tear up.  When I sat down they told me that everyone was listening...

I could see that there were camera men on the sidelines, but didn't realize at the time that they were focused on me, or maybe I would have posed a little better:)jk.  Well, as soon as it was all done we headed out the door.  As we were walking, Kelli Frato, the one I was working with, said that the media might want to talk to me.  (I think that was her plan:))  I was only a few steps out the door and they were on my tail.  One even tried to get past Dave before Dave told him that I was his wife and he backed off a litte.  So we talked to the Deseret News and before that was done the tribune was there with his camera and he even took a picture of my speech for a follow up.  Next it was 2News, they hooked me up to a wire and I grabbed Dave and made him stand beside me and  then we were telling it all over again.  I was on a high, I was worried I would need my oxygen, but adrenalin kicked in and it was good, other than the sore feet and walking funny:)

It was exhausting, but so worth it.  The crazy thing was the insurance people that were there to oppose it said there piece, but didn't have any data to back it, so it passed unanimously to go to the next round.  Dave and my Dad think they are going to go behind closed doors, but I still think we are going to win in the end, because their arguments don't make sense.

Here is the follow up in the tribune
http://www.sltrib.com/sltrib/politics/55860192-90/bill-cancer-chemo-drugs.html.csp

KUTV2
http://www.kutv.com/news/top-stories/stories/vid_3917.shtml

Deseret News(I made the front page:))
http://www.deseretnews.com/article/865573605/Bill-aims-to-eliminate-costly-difference-between-oral-IV-chemotherapy-for-Utah-patients.html

It was definitely a neat experience...Kind of crazy how the government works...

I went to the Doctor today.  I was right about the kidneys, yeah a few stones in EACH kidney.  No wonder it hurts.  But atleast they couldn't see any cancer there.  There was also a large area in my right lung.  The radiologist said he thought it was an infection/pneumonia or possibly cancer.  Most likely the infection, but I have not been coughing or had a fever, so we will just watch.  The same with the kidneys, if it gets worse he will send me to a urologist, since (he told me) I haven't met all the doctors in town yet:).

The tumor markers weren't the greatest either.  There are 2 that we are watching at the moment and the one had stayed the same where the other one had actually gone up, which is not what we want to see.  I have honestly felt that things weren't getting better, its amazing how I am feeling more in tune with my body.

Here is the good news.  Now that I have avastin, I can take it with the chemo pill. He said that he doesn't give it by itself.  He told me that studies have shown that there is a connection that the avastin and xeloda work extremely well together and are very promising.  He was excited that I can have it now, because he is very hopeful.  I have felt the same way since I got approved.  I feel like it is the key to this whole ordeal.

Here's to hoping it works...

So I called the doctor last week telling him we need to rethink having a PET scan.  He had felt comfortable at the last visit to bypass it this time, but as the weeks have gone on, I just have not felt well.  My back has been extremely painful, anytime I move I have shooting pain.  But today I started realizing how far up the pain was, so I am wondering about my kidneys...not sure but going to ask about it.  I got my scan today as well as did my labs so they will all be there when I go in thurs. for my appointment.  When I do my tumor markers test it takes a few days, so I am always a month behind in knowing where we are at with them.  So this time I want to  have all the latest to know for sure what is going on.  I am kind of questioning this chemo pill, but will know after talking to Dr. 

I keep getting wonderful thoughts and encouragements on my facebook page.  Thank you so much for those, they definitely lift me up even for a moment...