Monday, June 30, 2008

Waiting for an update!

Well I wanted to start by saying thanks to all those who felt like they could leave a message. I love to hear from you all. It is very helpful. So thank you so much. I am feeling great today. The meds are still working.

I have been waiting to hear from someone this morning. I guess the good news is no one seems to be treating it as an emergency. Which must be great news right. The Kadlec Chemo nurse called this morning to see how things were going. It was so sweet of them to call after last week. Then we called Dr. Kris to see what he thinks. I haven't heard back from him. Ryan called Dr. Rado's office they just called back and said that they are only scheduling an appointment with Dr. Fewle. I think that is how you spell it. He is the neurosurgeon. Before Dr. Rado's office called. Dr. Fewles office called and set up an appointment for tomorrow at 8:45. So I guess not big hurry and we will know more tomorrow or we are hoping to know more tomorrow.

I will keep you updated as information comes in. For know things are going well and I really don't need anything at this time.

Sunday, June 29, 2008

Good New Bad News

Well some of you have heard the news and some haven't. I wanted to let a few close friends know the news before I posted it on the blog. That is why it has taken a little while to post.

I have Brain Cancer. I was up all night Friday night thinking about what I wanted to say on the blog. I felt like I had come up with all the right things to write but of course I didn't get out of bed and type. I didn't want to wake up Ryan. So I hope I can remember all I really wanted to say. I know I can remember all the details about the last week or so but there are other things I wanted to say. So we will see how this goes.

Last Thursday I went in for my IV drugs Herceptin and Zometa. I have been getting Herceptin along with all the chemo treatments and will continue to get it every two weeks. They said I could have side effects with it but I haven't seemed to have any. I have only had two treatments of the Zometa. The first time I had it I had flu like symptoms and a sore on my lip that hasn't gone away in a month. So when I went in a week ago Thursday it was my second treatment of Zometa. I was hoping for no flu like systems or any new systems. Thursday things went well no side affects. Other than tired from the Benadryl which was normal. By Friday morning I woke up and didn't feel great. The only way I could think to describe it at the time was like I had been hit by a truck. The more I thought about how I felt I could put it in better words. I had nausea, dizzy and like my head was been squeezed. Anyway every morning since last Friday up until this Thursday that is how I felt. It would take a few hours in the morning to get going and shake off those feelings. But once I was up and going I was fine. I thought maybe my neck was out again and that was causing the pain and other systems. So I was really more or less waiting to see Dr. Kris and see what he thought.

So on Thursday Ryan took me down to see Dr. Kris. He gave me the great news that there was nothing in my C5. The MRI scan come back clean. That was great news. I thought that meant I was officially Cancer free. I also told him about the sore on my mouth which he checked out and treated. I would like to say that after a month of that ugly sore it was gone the next day. He said it was from the toxins in my body. I also told him I thought my neck was out. So he adjusted my back that was really out but he said that my neck and head were not really out. I thought that was a little strange because how I had been feeling. But I trust him. So he checked to make sure that my body at this time is able to fight any cancer and it is. He also added a new powder medicine to my daily pill taking. This one will go with the Herceptin I am taking and maybe eventually it will be able to get replace the Herceptin.

After I left the Dr.'s I slept most of the rest of the day. I still am not feeling well thinking my neck was out. Oh, yes Dr. Kris thought that maybe the systems were from the Zometa. On Thursday night all the sudden my head was hurting worse lots of pressure and like my brain was floating in side and waves of pain from the back of my head to the front. I was also dizzy and had nausea. I didn't sleep well on Thursday night. So Friday morning I asked Ryan when he was going to be home to give me a blessing. He said he would be home around 12 we were suppose to go camping. Anyway that is when I decided I needed a blessing. Ryan ended up having to work longer than he thought and after talking to him and a friend. I decided I needed to call the nurses at the hospital and see what they thought. They thought I needed to call the Dr.'s office. So I called and talked with the nurse. She said it is just a migraine and she would order me some pain medicine but that she would also talk to the Dr. and get back to me. So two hours later she said she had called in the pain medicine but that the Dr. also thought I needed to go in for an MRI. She said she would call the orders over. That I should wait a bit and then call over and schedule the appointment. So I called over and they told me they had talked with their supervisor and they didn't have an appointments until next week on Tuesday. I wasn't sure what to say. Then she told me to try calling another hospitals to schedule one. So I got off the phone with her and was going to call the Dr when my sister walked in to take the kids. She hadn't called just showed up and thought I might like some help. That is when the hospital called and said someone didn't show if I wanted to come now I could. Kendall loaded up all the kids and drove me over to the hospital. I thought I was going to be able to go right back. Since they had the orders and told me to come right in. But when I got there they had me fill out a bunch of paper work. I thought that was funny because I am already an out patient there what papers do I need to fill out. Oh, maybe I should say how many more could I fill out. Anyway they finally got me back for the MRI. They did the scan and then had me sit in the room and wait. That was unusual because when I have had them before they send me right home and say the Dr. will let me know the result. They kept coming in and saying they have a call into the doctor so it will be a few minutes. I had them check the waiting room. Ryan had showed up and so they brought him back with me. Then this guy came in with his cell phone and hands it to me. It was Diana she is from Dr. Rado's office she is on call for him he and Mitra are on vacation. Surprise Surprise. Every time I have something wrong or have to go the hospital they are gone. I have decided he is not allowed to take vacation every again. Just kidding. Anyway she was talking to me and tells me what they found but not making much since to me. So I finally said are you telling me I have cancer again in my head. She said yes. I don't think she wanted to tell me. I don't think the hospital wanted to either.

So when I got off the phone with her this Dr. guy asked me if I understood what was wrong and what was going to happen. He took some time to go over everything with us. He was so nice and happy and upbeat just what I needed. I am not dieing nor am I dead. The last thing I need is to be treated that way.

So he said they went back and checked all the MRI's, CT scans and PET scans to see if they could have caught this earlier. He said they couldn't have. There was some white right by where the scans stooped but it just looked like bone. Now that they have a head scan they can tell it is something else but there was no indication from the other scans that would have lead them to think that the little white spot was anything but my bone.

He also went over what he thought they would do. He thinks the surgery should be an easy one. It is in a good location to operate and shouldn't be a difficult surgery. He also said it is encapsulated so it is not spreading, growing but not spreading. That is great news. The fact that it is in a good location is good news. He also said he doesn't recommend radiation for that location because it is to close to the brain. He also doesn't think I will need chemo. So all in all I think it was great news. Of course he is not my doctors so we will have to see what they say.

Diana said Monday morning she will start making phone calls to get me set up with the Dr.'s I needed to see to make some decisions. So at this point I don't know for sure what we are doing or what they are going to do or when I will see any Dr.'s.

Right now they have me on a steroid for the swelling on the brain. They also have me on an antacid for my stomach she said the steroid can be hard on my stomach. They also have me on pain medicine and Kytril for the nausea. She felt it was o.k. to send me home and I would be fine until this next week when I could get in to see some doctors.

So we will see what next week brings.

I want to tell you please don't treat me like I am dead or dieing I am not. I feel good and this is just another trial that I will learn from. I love to visit with people so please feel free to talk to me and ask what ever you feel like. Also I would like you to know I have a life and kids and they keep me busy just like every other mom. I am always up for talking about them and what is going on in our busy life if you don't want to ask or talk about the cancer.

I also want everyone to know how truly blessed I have been in the last couple of days. Well all the time but I have seen and know that my Heavenly Father loves me and is taking good care of me. Most cancer patient don't have any systems and don't find out about their cancer until it is to late. I had systems and they weren't bad enough for me to do anything. I didn't like the pain I was in on Thursday and Friday but I am glad I had it or I wouldn't have called anyone. I am blessed that my sister showed up when she did. Any earlier and I would have sent her away. I was blessed that someone didn't show for there appointment. I was blessed that they found it. I was blessed to have Diana there to say she needs an MRI and not just pain medicine. I was blessed to have a smiling happy man give me the news and go over it with us. He was so good. When we went home I felt and knew my Heavenly Father was taking care of me. I also want you know that I am thankful for my trails and that I can learn and grow and be strengthen through these trails that I have had. I know my Heavenly Father love me so much he has given these to me to help me become a better and stronger and more faithful person.

Sorry it was a long post. I hope it wasn't overly informative. I know that not everyone that reads this is a member of the chuerch but I had to let you know how I feel about what is happening to me.

Saturday, June 21, 2008

Still running more test!

I think I posted that I was going to have an MRI and a echocariogram (SP?). Well I had those on Wednesday. Everyone keeps asking me how the the test went. The test went fine. I don't know the results and probably wont know the results from the test until next Thursday when I see Dr. Kris. My father in law and few others have asked how I could stand the waiting for the results. This time I am not in a hurry. I figured if they were bad they wouldn't have let me leave the hospital or they would have called me into the office. So I am assuming everything is o.k. I am not worried! I thought the test would only take maybe an hour or so it ended up taking almost three. The echo takes 20 and the MRI takes 22 minutes. So why did it take so long. Well I think the answer is I was at the hospital. If you ever have to have a test done try to have it done accross the street. They keep on a schedule over there. In the hospital emergency come first. Which of course they should. I just mean if you don't need it done at the hosptial try to do it across the street it will be faster.

Thursday I had Hercepton and Zometa. This time it only took 2hrs and 40 mintues. That was a little faster than the last time. I never know how long it will take. Some times they are quick and sometimes they are slower. It usually doesn't matter I like visiting with the nurses and getting letters written and what ever else I can find to get done well I am there. Plus I get to order all the food I want that is the best. I was also informed at this visit that the Benydrl I get before the Herceptin and Zometa makes me behave like I am drunk. Sinice I have been taking chemo they have given me Benydrl and I always feel very loopy and tired. Ryan usually goes with me and drives me home. Anyway this time they told me you really need to have someone drive you home. I think they have never said that before because I always go home with Ryan. Since Ryan doesn't go with me any more I think they think I need a driver.

Next week I see Dr. Kris.

I was thinking Yah I am all done then I looked at the calendar and was like oh I still have a lot of appointments. Some day soon it will be Yah no more appointments or at least not as many.

Tuesday, June 17, 2008

Last weeks Dr.'s visits!

I have been thinking about this post for a while. I have been trying to figure out how to tell all the information I received last week from both of my Doctor visits. I finally decided if I didn't just start typing and say something I wouldn't say anything.

Lets start with some great news. The cancer is gone!!!!! There is a questionable spot on my C5 (a vertebra in my neck) which Mitra thinks is a structural thing not a cancer thing. I have an MRI tomorrow to make sure it isn't a cancer thing. I am sure it is NOTHING! I have felt for some time now that the cancer is gone.

Mitra's point of view: She made it clear that they didn't think that the cancer would ever be gone. But that she was so excited for me to have it gone. There is a very big chance it will be back in the next year and that they are just waiting for that to happen. I was shocked to hear this and this is not what I was thinking or what I wanted to hear. So I was very upset when I left the appointment. As I will go into more detail latter Mitra says they are going to try some things. But that they are going to allow the cancer to come back and then figure out how to treat it. So not to keep it gone but to treat it once it comes back.

Dr. Kris: He is going to do everything he can to keep the cancer from coming back. He believes that is possible. There is always a risk it can come back but he is doing everything to keep it gone.

The first thing we talked about is that the cancer is gone. She is going to have them do an MRI on my C5 to make sure that the questionable spot is not cancer. She also said everything else looks so good. She wasn't happy that Dr. Kris already gave me the results to the PET scan. Oh, well I wasn't going to wait 3 weeks to hear from them.

The second thing she talked to me about was menopause. There was so much information so I will try to do my best to go over what she said briefly. They want to put me on Tamoxifen (I think that is how you spell it). Tamoxifen from what I understands I will still produce estrogen but that it wont go into my body. I will still have a cycle but the estrogen wont be put out into my body. I think this is the jest of it. This is something they are going to wait a year to do. Then do the tamoxifen for a couple of years then take out my ovaries after that. Then something else after that. I was still trying to process all the information. We talked about that the HER2 Neu is 86 percent of my cancer and that the Herceptin I am taking is reducing that 86% of the cancer from coming back. But the cancer in my body was also 14% estrogen based. She said anything above 10% has to be treated. She said for the next year we will stay on the Herceptin to make sure the cancer doesn't come back while I am on that. Then when it does they will biopsy it and figure out weather it is estrogen based or HER2 Neu based. If is estrogen based they will treat that or if it is HER2 Neu based they will treat that. Then after a year they will take me off the Herceptin and put me on the tamoxifen and see if the cancer comes back then and treat it. If it doesn't then they want to take a break from everything for three months. They want to see if the cancer will come back while I am not on anything. Then if not they will put me back on treatment. I don't know about you but it seems wrong. Don't you think they should be doing everything for me to make sure it stays gone. Not to wait to see which way it will come back. I think that is why I left the Dr. so upset.

We also went over that I need to have an eye exam. My eyes have been a little blurry lately.

She also scheduled an echo cardiogram(sp) an exam to watch my heart. Some of the medicine I am on can cause heart problems. So they just want a base line and they will check it once in a while.

The flu like systems I have been having are from the Zometa. Which she said should go away after a few times.

I have been having headaches for about 1 1/2 weeks and she said they were going to do the MRI and see what that said before they tried anything for the headaches.

She said I will have blood test every month to watch the cancer. I will stay with monthly visits for the next couple of months then I will go to every other month and then at the year mark take a 3 month break from everything. Then she said we will see.

Dr. Kris like I said, said that he is going to change my meds a little and treat so the cancer wont come back. That makes me feel so much better. I feel like he wants me to stay healthy not wait for it to come back and then treat the systems.

He did a lot of adjusting which is why I was having the really bad headaches. They have been so much better. No headaches. The headaches were also tension headaches from my Dr's visit with Mitra. I guess I didn't like what she had to say about waiting for the cancer to come back and that it probably would.

He also changed some of my meds. Still on 22 pills twice a day.

Oh, I almost forgot my CA2729 is back up to 38. Mitra was not concerned. She said it can bounce around for a bit after chemo.

Sorry it was so long.