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.
Sunday, June 29, 2008
Good New Bad News
Posted by Ro's Lumpy Breast at 1:06 PM 20 comments
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.
Posted by Ro's Lumpy Breast at 6:40 PM 8 comments
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.
Posted by Ro's Lumpy Breast at 6:21 PM 16 comments
Thursday, May 29, 2008
O.k. this is what Dr. Kris had to say about the scan.....
The few things I was worried about he said were all o.k. they were normal. The only thing he is worried about is C5. The report said it wasn't healing but it also didn't say the cancer was going there. So he said make sure you talk to Dr. Rado about it. So it is almost offical just waitting to see Dr. Rado in a few weeks but Dr. Kris said this is great news the best news. The cancer is gone. Can you believe it!! Just one more Dr. to give me the good news and we are done for the most part!!!
Dr. Kris did some adjusting in my neck and back.
I also have been sneezing alot and said I felt like I might be alergic to something. So he did some test and we found out I am alergic to grass. Alright I wasn't before but I guess I am now.
He also found an infection in my throat he gave me some vits for that. So hopefully that clears up soon.
Posted by Ro's Lumpy Breast at 4:09 PM 12 comments
Wednesday, May 28, 2008
I think we might be done?
Well, I just got the Radiology report from Kadlec from the PET scan. I didn't know they were going to send it to me. I have a Dr. Kris appointment tomorrow so I thought I would just hear the report from him. But they sent it to me. So I am going to give you the report in full. We will see what Dr. Kris says tomorrow and what Dr. Rado says the first week in June. Anyway here is the Radiology report....
The previous extensive metastatic disease visualized on the scan of 10/09/07 has all completely resolved. There is no evidence of malignant FDG uptake noted in the left axilla, left neck, or mediastinum. All previous malignant uptake in the left breast has resolved in addition, the nodular masses throughout these regions have completely resolved on CT imaging. Liver uptake is now uniform and normal and the prior low attenuation defects on CT images on the liver have resolved.
Prior bone metastases of T6, T9, T11, L2 and L4 show sclerotic healing. The prior lesion on the C5 vertebral body does not show any healing sclerosis. The prior left ilial and ischial metastases show healing sclerosis as well. There is peresistent chronic pars defects of L5, without subluxation.
There is physiological uptake in scalene muscles of the lower neck. There is physiolgic uptake of the FDG in the pharyngeal lymhoid tissues, muscles of the floor of the mouth, and salivary glands. There is some physiological uptake in the sigmoid colon and uterus, not malignant. There is some minimal uptake in teh region of the nipples of both breasts, a phsiological occurrence.
Conculusion
1. There has been complete resolution of the prior widespread metastatic neoplasm. Furthermore, all of the nodular soft tissue disease of the chest and abdomen has resolved on CT images. Bone metastases now show sclerotic healing.
2. There is no obvious active malignant disease at present in the range of the scan.
So can you believe that!! I think that means everything is gone. There are a few questions. But I think I am done with all chemo treatment!!!!! That is so good my hair is coming back in and I didn't want to have to start over again. It has been 7 or 8 weeks off chemo and the hair is finally coming in. I really didn't want to start over. YAH!!!
Posted by Ro's Lumpy Breast at 7:35 PM 10 comments
Sunday, May 25, 2008
Vacation
Our family took a much needed vacation. We had planned a trip to Disney last October and were unable to go at that time. Since I had a good break and was feeling great and we got very cheap tickets we decided to go ahead and go now to Disney instead of in October. We all had a great time. I little rocky the first day but it got smoother was the week went on. No one was ready to come home. I can't say it was restful but it was so much fun and enjoyable to be with family and friends.
Posted by Ro's Lumpy Breast at 11:41 PM 4 comments



