I typed this up last week and forgot to post. We left out of town last Friday. When I got home today I had a few phone calls saying I hadn't posted in to long.
O.k. so my mother taught me if you can't say anything nice don't say anything at all......
I think that has been my problem lately with not updating my blog. I thought last May this trail was over then they found the brain tumor which all went really well until I had radiation. Then it seems like I just couldn't get back to a normal. Every time I turn around with this radiation something else pops up. The last month I have been dealing with being very tired. So tired that I while unloading dishes I have to sit down and take a break. Dr. Rado's office run some test this last month but kept telling me it wasn't my thyroid or my pituitary gland. Which all my system fit with that diagnoses. So I became very frustrated. So they decided since they couldn't figure out what was wrong with me they would send me to a endocrinologist. Basically they are a gland doctor. Rado's office doesn't think I have a thyroid problem or a pituitary problem but they think something is wrong. So they called over to Dr. Wilson one of the two endocrinologist in the tri-cities. They said it was urgent. So I got an appointment for Dec 2 that is when you get an appointment when it is urgent. NICE!!! So basically they are tell me there is something really wrong but it can wait a month and a half. So you can just have absolutely no energy for the next month and a half. Then who knows how long to get you better after that. So if you can't tell I am not very happy with the doctors. Luckily I see Dr. Kris who is my life savor. He said you have a theiord and a pituitary problem. And he put me on some vitiams last Friday. Since then I have been getting better. Thank goodness for Dr. Kris or I would still be laying in bed for our family vacation. I have been in a panic because we leave today for Disney World and I thought I might not make it. I am still not 100% but I am feeling well enough to go.
I am also waiting for CAT scan results from Dr. Fewel. He is my neurologist (brain tumor doc). About two weeks ago it felt like my scull is starting to cave in. I have been having some head symptoms. So I am hoping that there is something they can do to help my headaches and dizziness.
So I am really feeling bad for my kids we keep telling them I am not sick anymore which I am not but them I am always laying on the couch not feeling well. So I am hoping soon my kids will be able to believe me that I am not sick anymore.
So you see if you can't say anything nice you shouldn't say anything at all.
Friday, October 31, 2008
Can't Say Anything NICE Don't Say Anything!
Posted by Ro's Lumpy Breast at 8:34 AM 18 comments
Friday, September 26, 2008
Tagged!
I was tagged by my sister Bailey. The rule is to go into you 4th file folder the 4th picture and posted it. So I did. Memories of boating. I definitely didn't get enough boating in this year. I tag Kim Hatch, Mandy Rassumessen (sorry if I butchered you last name), Ashlynn Lewis, Karen Johnson, Cherie Jenkins.
Posted by Ro's Lumpy Breast at 12:16 PM 7 comments
LotS gOING On!
O.k. I have been told by my mom that I need to update. She asked if it have been like 6 weeks. I said it hasn't been that long. Anyway long enough I guess. So I last left you I was getting a PET scan to see if I had any cancer. The PET scan came back clean. No cancer. So you would think I would be so excited and want to post that wonderful news. Well I was not really wanted to post that because I didn't feel good about those results. Not that I think I have cancer but last time we got good news it was rudely interrupted by a brain tumor. I have been having lots of symptoms still and I wanted some of those things answered.
I had an appointment with Mitra last week. Some of my symptoms I am still having are headaches, blurred vision, dizziness, raspy voice (not at the moment), loss of appetite mainly sugary foods, tiredness, back aches. Anyway when I went in I wanted to know why I am still having all these symptoms. The raspy voice she wants to wait until I have it again. Which I am not excited about but I guess it will have to wait. She also wants my to do occupational therapy. Which is therapy to work my brain. Know they tell me all the bad things radiation can do. So I was suppose to do that this week but it got bumped and I will explain why later. And she also prescribed my a depression medicine. Ryan and I have noticed since the brain tumor was taken out I am a little more blue. Anyway Mitra said that was it for now. They I got a phone call from her the next day saying Dr. Rado wanted to do a spinal tap.
So last Friday I went in for a spinal tap. The spinal tap wasn't painful but the medication for pain was a little painful. Over all the spinal tap went well. I left the Dr. office with a small headache. We went to dinner and I was having a slight headaches but not to bad. By Saturday the headache was really bad. I tried to push through it and do some canning. I went out to the store to look for ring and jars and ended up coming back home. On the way home I had to pull over to throw up a few times. So Saturday and Sunday and Monday I was lying in bed and not moving much. The was the only thing that relieved the pain. Sorry Daniel I have to say thank you, thank you so much for canning my fruit for me and to your family for canning my fruit. That was a massive job and I still don't know how to can. But a big thanks to you and your family. So talked to Dr. Weeks on Saturday who told me what I was feeling was normal. Then when I talked to Dr. Rado's office on Monday they said it wasn't normal. They booked me a bed at Kadlec and I went in thinking they we just going to hydrate me. But before I left I had a blood patch done. I was feeling I thought better and still had some symptoms. I went home Tuesday night. I took it easy on Wednesday. A kind friend kept my kids so I could rest. So on Thursday it was back to a normal routine. Thursdays I do a lot of driving. I made it through most of the morning. Then I wasn't feeling great from all the driving around and throw up again. I was spouse to be at the hospital for my Herceptin but I wasn't going to be able to drive there. So my father in law took my over to my appointment. Dr. said he wanted to order an MRI contrasted and none contrasted. I was so excited no blood patch. Then he called back 1/2 hour later and said he wanted to do another blood patch. So yesterday I had another blood patch. I immediately felt so much better.
The doctor that did the patch explained that the fluid creates a space for you head to float above your spin. Because the fluid was leaking my head was resting on my spin. That is why I had all the symptoms I was having, nausea, massive headaches, back pain, not able to turn my head or eyes to the left.
So today I am feeling so much better. They said the spinal tap everything was normal so I we are back to where we started. I wasn't able to go see Dr. Kris this week and had to cancel because of the way I was feeling this week. So maybe better news to come in the coming weeks.
For now I am so excited to be feeling more normal!!!!
Posted by Ro's Lumpy Breast at 9:16 AM 16 comments
Monday, September 8, 2008
Waiting?
Well a few things have happened lately that I decided I would share. First it has been awhile since I have updated because I have been so tired. I just haven't had extra time to update. Am I getting my energy back is the biggest question I have been asked lately and the answer is no not yet. I keep hoping soon. My mom said to me you look good you don't look tired. I told her it is because I don't have time to be tired. I have children.
My back went out again really bad during radiation treatment. I had Dr. Kenzie, she is in with Dr. Kris, fix me up. A few days later my back was better. About the same time as my back went out I was still having a raspy voice and I had gotten back my CA2729 counts. The count was 44 I think. I stopped by doctor Rado's office and asked what they thought and if there was something we could do. So Mitra told me she would send orders over to have a PET scan. She didn't think they would approve one becasue I had just had one but that she would try and if not than a CAT scan.
Since then I have scheduled a PET scan for Sept 9th which is tomorrow. I have been having back aching like when I was first diagnoised, I am still tried all the time and my raspy voice is back again. I went and saw Dr. Kris last week. He looked to see if my back was out again and it wasn't. So he checked me and we think I have something again is what he said. He wouldn't come out and say cancer again. But I have been feeling that way for a little bit now. So we will see what the PET scan tells us. I do the scan tomorrow and the results usually take three days. I have a Dr.'s appointment Wednesday so I am hoping they stay on top of the results and not wait a month to get back to me.
So right now is another waiting game.
Posted by Ro's Lumpy Breast at 10:52 AM 18 comments
Back to a routine!
This will be a little about everything. We had a great rest of the summer. We finally got to do some camping. We were worried we wouldn't be able to but we went to Mt. Rainer and Mt. St. Helen's. The kids really had a good time camping, hiking and playing together. We also were able to make it to my families Reunion this year in Seattle. We did more hiking, floating down the river (luckily with no one getting hurt), eating, talent show and lots of visiting and playing. Thanks Aunt Christy, Uncle Steven and Aunt Lynn for all your work it was so much fun. We also went to the fair which we all love to do. We didn't make it to the water parks or Silverwood this year but we did do a little bit of boating together which we love. We didn't do as much this year as we usually do so hopefully we can make it through winter until we can go out again.
We have been very busy at our house with getting ready for school to start and now I am sure like the rest of you very busy with running kids every different direction. Both Cole and Kamden are so excited to be back in school they missed there friends. They loved summer vacation but really were ready to see all their friends. I was sad to see them go back but happy for the routine we are back into. Carter thinks he is so big now being in preschool. He just doesn't understand why he doesn't get to go everyday like the other two kids. I always think things are going to get a little less busy when school starts but it seems to just get busier. Between school, preschool picking up dropping off, piano, scouts, soccer, dance, doctors appointment, treatments, blood work, test, birthdays, health insurance and all the other house hold things life it very busy. I am stilling saying and will continue to say I don't know how working mom's do it all. I am thankful to those who were so kind to help me out and bring some meals in during this time. It really help lighten my load.
Posted by Ro's Lumpy Breast at 10:32 AM 2 comments
Appointment with MITRA
I had a dr.'s appointment with Mitra on Augustt 13th. When Mitra came into the room she was a little heisatant. She wasn't sure if I was going to bit her head off and never want to see her again. She was worried I was really mad that they didn't catch the brain tumor. I told her I didn't feel like we would be in a different place if they had caught it any sooner. She was glad I was o.k. with things.
I had a lot of question for her mainly about why they didn't catch the tumor. She said because usually you have symtoms which I didn't but they didn't think they were that bad. I have learned in the last few weeks I need to be better about tell the doctors and nurses about all my aches and pains so that they can better treat me. I just have felt like I was complain and so if they are not bad I don't tend to say anything. I have learned you have to tell everything no matter how small the ache or pain.
We also talked about my scratch or raspy throat that I had for the fourth time since I started chemo and the fact that this time it had been about four weeks(last 6weeks). I was hoping it was still thrush and that I just needed more antibotics. She was thinking it was acid reflux. So she put me on some antibotics and an acid reflux medicine. I was to take them and hopefully my throat would get better. It didnt' so the next step was to be a scoop down my throat but we opted for something else which I will go into latter.
I wanted to know when my next scan was going to be. I felt like it was time for another one. She said with radiation we need to wait for one month after treatment. The radiation can cause swelling and it wouldn't give us a good read on my head. I wasn't concern with the head just the rest of my body. My counts were going up and I wanted to check. She said we could wait it would be alright until we could do the head too. I wasn't very happy but that I could wait it out.
I was and am having edema. So I asked about that. She said it could still be from the steriods but that she would give me paper work for a echocadiogram (sp) again. She said she would also like to check to make sure it wasn't my heart from the herceptin I am getting.
So I left the appointment with a prescription for an anitbotic, an acid reflux, and orders for an echo and chest x-ray and an echo. So lots to do before my next appointment.
I had both the x-ray and the echo done the next day. I haven't gotten the results back from those but I am guess they are all good or I would have heard something.
Posted by Ro's Lumpy Breast at 10:15 AM 0 comments
Mask
I forgot to post this with the last post. This is the mask that they would put on me and snap it down to the bed for radiation treatment.
Posted by Ro's Lumpy Breast at 10:09 AM 0 comments
Thursday, September 4, 2008
Roller coaster ride of rADiaTIon!
Oh, I have this problem when I don't update me family blog often enough I can't remember everything that has happened plus my memory is getting worse ever day or so it feels like it.
I made it through radiation. That really wiped me out. I needed to take naps everyday for a couple of hours which really cuts into the day. I would get up go to radiation take the kids to do a few things come home for lunch and then it is time for a nap. By the time I get up it is dinner time and then time for bed again. If I didn't take a nap it would make me more nauseate then I already was. So it came down to take a nap everyday to help to feel better.
I had some interesting experiences while I went to radiation treatment. Some really nice experiences and some that I would have rather not to have had. I would like to share a few. There were some really nice older ladies that volunteered there that were very kind and helped put a smile on my face. I also really enjoyed one of the nurses there. She was very helpful and answered alot of my questions and concerns while I was getting radiation. I had met her before when I was first diagnosed so it also helped to see a friendly face. Another nice experience was one of the techs was always very friendly and talkative which I loved. He was also kind enough to show my kids where I get treatment and what all the equipment looked like. I know the kids loved that. So it was nice to have some good moments with something I didn't enjoy.
Then there were some not so fun experiences the one that tops my list I have to share. I will give you a little back ground first. When I would go in for radiation treatments it would take two minutes from the time I would go back into the room and then come back out. I would not have to undress so it was a very quick in and out appointment. So instead of finding someone to watch my kids every day for a two minute appointment. (There were lots of offers thank you!) I took the kids with me.
There are three waiting areas. One is by the front doors which has kids toys but the radiation techs can't see me from there. Then there is the middle waiting area which is were the nurse told me to wait when I have kids with me or my husband. Then there is the back waiting room where all the radiation patents wait to have radiation. Which I guess they don't want anyone other than the patients and volunteers in. I am sure it is because most of the women have to wear gowns on the top half.
I was taking the kids with me and we were waiting in the middle waiting area where the tech would know I was there. We would wait there maybe 3 to 5 minutes some days not even that long before they would take me back. Then the kids would go over to the front waiting room and play with the toys for the 2 minutes I was being treated.
Well one day after a week and a half of treatments the front desk lady came over to me and informed me that I was no longer aloud to sit there. She said I needed to sit out by the front door. Her reason was because of the patient and they receptions answering couldn't hear on the phone. I was so shocked I told oh o.k. So we walked out to the front doors and sat in that waiting areas that day and it took the tech about 20 minutes to come get me because they didn't know I was there. They asked me why I wasn't sitting in the other area? I told them we were told we were not suppose to sit in the other waiting area. They were a little confused as to why I wasn't suppose to sit there. So as I started to think about it I was a little more upset. Radiation patient don't have a lowered white blood cell count so my kids are going to get them sick. And we weren't in the same room with the patients? Then the whole phone thing give me a break the kids were not noise for the whole maybe 3 to 5 minutes we sat there. And forgive me how in the heck do receptionist do it in peds offices? And what am I not a patient. I think that I am a patient. I am sorry if most all patients are 60 to 80 years old. But there are some of us that are young and still have kids. Lets not forget we all had kids once. An office doesn't have to be died quite. And give me a break if one of the old people complained.....well guess what I had to sit in there on the other day and listen to all those old people complain about everything under the sun. Forgive me I didn't go complain when I had to listen to all of them complain about there treatment, doctors, life and how miserable they all are. O.k. that is the one thing that made that experience not so fun. Sorry to complain but I just had to put it out there how much that really upset me.
I know I shouldn't leave this on a bad note so remember I said I also had some great experiences also.
Posted by Ro's Lumpy Breast at 7:28 PM 0 comments
Thursday, August 14, 2008
What your geuss?
O.k. so when I went and meet with the radiation Dr. he said I would lose my hair in the first week. Then I talked to one of the nurses she said 4-6 weeks, then I talked to another nurse and she said 3-4 weeks. So I want to know your guess how long before my hair starts falling out?
Posted by Ro's Lumpy Breast at 7:08 PM 15 comments
Getting through treatment
I had an appointment with Mitra yesterday. We went over a few things. I have another bladder infection. Dr. Rado said no bladder infectino and Mitra said yes you have a bladder infection. Good thing someone is paying attention! So I am on some antibiotics which we are also hoping will help my raspy voice. This is the fourth time I have had a raspy voice and I have had it since the surgery or close to it. So I am on the antibiotic, she is also having me take a reflex med and I will also be having a chest x-ray. If one of those three things don't rule or let us know what is going on she will have a doctor do a scope to check out my throat. I am hoping the antibiotic works and that it is just still thrush.
We talked about my next scan. She said I can't have a scan done until one month after radiation. The radiation makes everything swell up. I asked if that would be o.k. to wait that long to do a scan on ever thing else. She said I would be o.k. Of course I am a little concerned. They still don't have my CA2729 results in from blood work on Tuesday. That is the main way we are watching the cancer to make sure it isn't growing and spreading.
I have had some edema. So Mitra is having another echo done. That is a test on my heart. To make sure that my heart isn't having any problems then we will look at something else if it isn't the heart that is causing the edema. So Mitra is going to keep me busy in between visits. I have meds to take and an x-ray, echo and still doing my iv meds.
So it was a good and informative visit.
Today I had my Herceptin treatment. Everything went well. I just can't seem to shake this tired feeling and always needing a nap from the radiation. Thanks Kendall for watching the kids during treatment and then for another few hours while I slept on the couch.
I am still having nausea. Mitra said not to wait until I get nauseated but to just take the meds every 6 hours. She thinks if I do a better job of resting I wont throw up. Which the last two days I have done a lot of extra sleeping or naps. I haven't thrown up but I still get a little nauseated late in the night but not bad.
Well I have 4 radiation treatments done and 11 more to go not bad. I have meet a few patients that have 42 visits. I am thankful for my 15 visits or treatments.
I love the techs at the Cancer Center they are so awesome.
Posted by Ro's Lumpy Breast at 6:45 PM 4 comments
Wednesday, August 13, 2008
Radiation has StARteD!
Well I haven't updated lately because we have been on vacation. We left last Wednesday and camped and hiked at Mt. Rainer and then headed over to Mt. St. Helen's on Thursday to Friday. After we were done at Mt. St. Helen's we head to a Family Reunion. We had a great time. Even Ryan had a good time. It was my family reunion so I was happy that he had a good time. And what kid doesn't have fun with cousin even ones he has never met. We were then lucky enough to have one of my cousin stop and stay the night with us on there way home.
Monday I started Radiation. That has been a whole new experience. The first day I was a little late and very worried about it and then I found out the office was running over an hour late. Monday's are the days you have to see the doctor before you receive radiation. On Monday there was only one doctor in the office so they were a little behind. It was kinda of fun to wait and see the doctor. There were about 5 old men sitting in the waiting room chatting and they were so funny. The visit with the doctor was very short.
I am not sure why I had to meet with the doctor since I hadn't had radiation at that point. Then when I finally got to go in and do the radiation wow. They turned on the beams, lasers what ever they call them to give me the radiation and boy could I smell something. I couldn't put my finger on it. So the next day I asked the tech. He said oh, ya there are a few of you who have sensitive noses that can smell a sulfur smell. I was glad to put my finger on the small I was thinking burning flesh. Sulfur much better thought than burning flesh. The whole treatment from the time I walked into the radiation room until I walked out took minute and a half. So fast! Not what I was expecting at all. The techs are very nice and friendly which is so nice.
About 10 minutes after the treatment I had a slight headache. Then after a few hours of errands with the family I had to have them drop me off at home to get some rest. I was able to get in a four hour nap. I seems to just hit me. Then after the nap I felt great.
Tuesday I had another radiation treatment. There was no one in the waiting room but the tech waiting for me. I was about 5 minutes late. I forgot I had to go have blood work done at the hospital at 9 and my radiation was at 9:20. I thought I was doing so good and was going to be to radiation early. I hate being late. Anyway I was late again. So I walked right in and right back and it took a minute and a half. I know I already said that it is just so amazing.
Anyway I didn't seem to get a headache or need a nap on Tuesday. I am not sure if it was because I was so busy and Ryan wasn't home so I wasn't relax and felt I could take a nap. But I didn't seem to be tired so that was good. Most of the day my stomach was a little off. Not enough to make me sick but just off. I woke up this morning about 1:30 and throw up. I am not sure if it was the radiation, I have a bug (my mom throw up on Sunday on our trip I could have caught something on vacation), or just something I ate? I guess we will see how today goes.
Today I have radiation and an appointment with Dr. Rado's office, I think it is Mitra today. I guess that would make sense, since I have so many questions. I always seem to see here when I have a lot of question and see Dr. Rado when I have no questions. Then tomorrow I have radiation and Chemo well not chemo but Herceptin. IV drug I get at the hospital every other week.
Posted by Ro's Lumpy Breast at 7:55 AM 4 comments
Monday, August 11, 2008
Growing up Texans: Six and a half inches
Oh that was what I was going to say you should donate it and I love it. It is still long and you will be able to do lots of cute hair do's.
Posted by Ro's Lumpy Breast at 8:20 PM 1 comments
Tuesday, July 29, 2008
Pictures from the hospital!
This is a picture of where the doctor signed my head.
This is me finally able to eat. I was asking for Sonic right after I woke up. They would only let me eat liquids right after the surgery. So I had 7 up and ice chips then I order Popsicles, broth and an Italian ice this was all in the first hour after surgery. I was able to keep that down and then able to order real food.
This is a picture of mom and dad with me right after surgery. I didn't open my eyes for the first little bit I was afraid I would be sick.
This is a picture of my mom and my mother in law waiting during surgery.
This is a picture just after we got there. This is the nurse that prepared me to go up stairs for surgery. She couldn't get an IV started. They say it is harder after chemo. It was hard for nurses even before chemo. The last couple of times they get it in the blood starts to flow and then just stops. So when I went up stairs the anasteseologist( I am not a good spell and no suggestion come up for this) started an IV in my jugular. They told Ryan that he needed to leave that he shouldn't watch so I didn't see him after he left before I went in for surgery. Doctor Fewel came in while she was working on the IV in my neck and he left right away. She had to stitch the tube down to my neck. That was a different experience not painful just very different.
Posted by Ro's Lumpy Breast at 9:50 PM 5 comments
Getting ready for rAdiATioN
Today I had my appointment to get me all set up for radiation. They took Ryan and I back to a patient room and gave me a consent form to sign asked if I had an questions. Then the nurse brought us back out to the waiting room to wait for one of the techs I think that is what they are called.
I guy came and got me and told Ryan he had to wait. So he took me back and put me on a CT scan bed and put my head in a pillow. They then took this piece of plastic that looked like those pieces of plastic that you loop yarn through when you were a kid to make a picture. Anyway he dipped it in hot water and then put it on my face to make a mold and lock it down to the table so my head wouldn't move. He then took some CT pictures of my brain and I was done.
He asked what time of day works good for my appointments and I was out the door. It was very fast and painless. It was also so different from any other experience with doctors offices then I have had. They are very nice but not a personal experience very cut and dry.
We will be on vacation next week so they agreed to start radiation the Monday after vacation. That means I will be done the Friday of Labor Day weekend.
Posted by Ro's Lumpy Breast at 9:12 PM 1 comments
What did Dr. Kris have to say about Radiation?
I think on the last post I put that I had an appointment with Dr. Fewel on Thursday it was last Tuesday sorry. I had an appointment with Dr. Kris on Thursday. I was a little nervous. I canceled my radiation appointment on Thursday so I could keep my appointment with Dr. Kris. We wanted to know what he thought about the radiation. We had fasted and prayed about the radiation and we both feel it is the right thing to do. So I was nervous Dr. Kris would say no I don't think you should do radiation. He didn't say that.
Dr. Kris said he thought radiation was a good move. He just had some suggestion on some more vitamins to take with the radiation to help it to work better and to help my cells not get so damaged.
I told him that the radiation Dr. told me I couldn't take some of the meds. Dr. Kris told me he had done some research once I told him I was going to do radiation and that all the meds are safe. So I will be taking them anyway.
Of course my back was a little out so I had an adjustment.
I also talked to him about the thrush and he suggested I get the nystantin(sp) the swish and spit med for my throat.
Posted by Ro's Lumpy Breast at 9:03 PM 2 comments
StAples aRE gONe!
I had an appointment with Dr. Fewel last Thursday it went well. He took out the staples. I had a few people saw or ask if it was going to hurt. It didn't I thought it might. But my head on the side were they cut I can't feel anything. So I knew I wouldn't feel those staples but on my neck I thought it might hurt but it didn't.
He talked to me about the fact that he would like me to have a scan again soon if neither Doctor runs one. So he wants me back in after I am done with radiation. We talked about radiation a little bit and some of the side affects. It was a short visit.
He said everything went well. I fortgot to ask him if I could drive again. He didn't mention it so I guess it wasn't that big of a deal if I drove before the two weeks since I wasn't on the pain meds. I also forgot to ask for the pictures and the piece of the tumor that he got from the surgery. I guess I will see him again in a few weeks. I hope I can remember.
Posted by Ro's Lumpy Breast at 8:53 PM 1 comments
Monday, July 21, 2008
RaDiatioN TrEAtmenT
So Friday I had an appointment with the Radiation Doctor. I forget his name. I really liked him. He was the most personable doctor I have had yet. He also was very throe and very informative. He did a full body exam. He went over all the possible side affects. He then went over what would happen. So if I choose to do radiation the possible side affects are fatigue, nausea (which they will prescribe meds for), skin burn(which I can use Aloe lotions), stuffy head(which they can prescribe something may also have to have tubes), hair lose after the first week of treatment(peach fuzz after treatment, then no hair for 6 months, then possible no hair grow except for Mohawk hair growth) I think those are the only immediate side affects. I asked long term and I didn't really get an answer. The only one that bothers me is the possible permanent hair loss. Knowing that eventually my hair will come back is comforting and makes it not hard for me to lose it. I am not so sure about the possibility of it never coming back for coming in thin that is a little harder to swallow.
We found out that you don't grow new brain cells you receive all your brain cells by the time you are two. Which in this case is good. The radiation only attacks the cells that split and grow. Which is the cancer and hair, skin things like that. So no brain damage just killing hair follicles, skin cells and the cancer.
We also found out that treatment will be 15 visits or three weeks. Which I think is great news. I was thinking 6 weeks. All the breast cancer patients I know are doing or have done six weeks. He said brain cancer is different. Even though it was breast cancer in the brain still brain so different. The appointments are about 20 minutes and a little longer on Mondays I have to see the doctor on Mondays before appointments.
I also had someone ask what is radiation. For me basically it is laser lights that are pointed at the area of treatment.
Also having radiation decreases my risk of the cancer returning by 50%. So I would go from %60 that it will return to my brain to %10 if treated with radiation.
I have heard not good things about radiation and was a little unsure if it was the right thing for me. So Ryan and I fasted yesterday to make sure that radiation is a good treatment for me. We feel that it will be o.k. to do the radiation. So I am scheduled for another radiation appointment to be measured and marked up or tattooed on Thursday. So I will let you know how that goes. I then should start treatment that following Monday or Tuesday. It depends on if they can get everything ready and set up how quick I will go in.
I still have the thrush it doesn't feel as bad and I am still taking the meds. It is a pill I will take for 10 days.
I also have an appointment with Dr. Fewle tomorrow so I will try to be better and post about that tomorrow.
I am feeling so good. I feel like I have most of my energy back if not all of it. I think the kids do a great job of keeping me busy and preoccupied which I think really helps.
Posted by Ro's Lumpy Breast at 5:47 AM 9 comments
Friday, July 18, 2008
nOthiG tAste riGhT
I went to the Hospital yesterday to receive my Herceptin treatment. I have decided that I need to be better about telling them symptoms I have and letting them decided which ones are important and which ones aren't. Instead of saying nothing and think in time they will pass. I was telling the nurse that my taste has changed but that the last few days more like certin things burn my tongue. So when I eat nothing tastes right. So you would think since nothing taste right that I wouldn't be eating anything but that is not the case I can't seem to put enough food in my mouth trying to figure out why nothing taste right. So I thought now they know about my taste then I told them my voice is horse again. This is the 4th time since chemo. I had told Dr. Rado and he said we will just watch it and see. The nurse said oh maybe they touch that part of your brain and the taste will come back. Then she asked to look in my mouth and asked if I had sores. I was like I don't know never thought to look in there and see if something was wrong. She said you have sores in your mouth. The other nurse came in and said I think you have thrush in your throat and mouth. Probably for a while. So know that I have made this a long story I have thrush. So they gave me a prescription yesterday and hopefully in the next few days things will start to taste good again.
Posted by Ro's Lumpy Breast at 6:10 AM 4 comments
Thursday, July 17, 2008
Our adventure on the BUS
Well again I relized it has been awhile since I have posted. With this surgery they wont let me drive until I see the doctor again next Tuesday. I thought that was going to be a really big challenge but it has been an adventure. The kids and I have been enjoying the bus system. We rode the bus to have some blood work done for an appointment I had with Dr. Rado and then we rode it again on Wednesday to the free movies. The kids like it is such a great adventure and I have found the bus works well to get around.
We are a baseball, softball loving family and Cole has been done for a while. Ryan or I usually like to play but things have been a little crazy this year. Ryan got asked to play this week so the kids and I really excited to head over to the ball fields on Tuesday. While we were there Carter was stung by a wasp and so was Bradly a friend. Anyway he cried and cried I felt so bad I have never had a child stung before.
Posted by Ro's Lumpy Breast at 6:43 AM 3 comments
Friday, July 11, 2008
Head Pictures
So my sister Bailey is here and we took some pictures with her new camera of my growing hair. She couldn't believe how long it has gotten sinice she has been here. To me it doesn't seem to be growing very fast. Anyway she said I haven't taken a good picture of it so here that it.
I hope this doesn't gross anyone out. I think it is kinda cool I guess that is having boys right. Anyway a picture of the staples.
Posted by Ro's Lumpy Breast at 5:05 PM 11 comments
Thursday, July 10, 2008
July 10th update
I just wanted to do a quick update. I came home yesterday. No news today. That is my good news. I slept pretty good. I am not having any pain so I haven't had any pain medicine since Tuesday night. They sent me home with some but I haven't needed any. They also sent me home with steroids to tapper off of. I really don't like them and have been looking forward to being off them. I still have a few more doses but should be done with those by Saturday. The only symptom is a tight neck. With all the stitching and staples it is tight. So I hold my head more still and funny. Mom says I probably need to work on moving it more. Which until today I hadn't even thought about. I was worried when I move my neck it would hurt but it hasn't just tights. So adjusting to that movability. I get a little winded when I get up and move around alot. So hopefully the energy will come back quickly. I am thinking the hardest thing is the no driving for two weeks. I think they do that because of the pain medicine and aren't sure about balance. I have been fine in the balance no problems there. So I see Dr. Fewle on the 22nd and the way it looks like I should be cleared from everything from him. I am no doctor but I feel great.
I just wanted to let you know that I am truly blessed by my Father in Heaven. There are and were so many miracles and blessings that have come from this. I am thankful for the opportunity to learn, and I hope to grow. Also to be able to see so many kind and helpful people. Thank you for your kind words, thoughts, prayers and help. Our family is very grateful for all who have helped and are helping us. We can never repay all the kindness so thank you.
Posted by Ro's Lumpy Breast at 11:13 AM 12 comments
Wednesday, July 9, 2008
July 9th update!
I thought i would update a little. There isn't much new going on. They moved me from ICU to I think the 4th floor which is the surgery floor around 11:30 am yesterday. Once I got here I have had lots of nice fun visitors thanks so much. I have had no really pain like the first night. I have been able to be up and around. Ryan and I even went for a walk around the hospital last night. The nurse didn't check on me much so I got some better sleep last night. I was even able to lay more in the bed last night.
Doctor came in this morning and said when ever i was ready to go home I could. So we will see how quick things get pushed through. I wasn't wanting to go home right away but I am ready to be in my own house. I wasn't sure I would be but I am ready.
So I am doing really well.
I can't remember if Ryan posted but I will see Dr.Fewle in 2 weeks we will get more update then. For now no driving and lifting otherwise what ever I am up for I can do. No washing my hair until thursday and he said it will take a few weeks to get all the yellow junk cleaned up. I can't start radiation until I see him Dr. Fewle and as of right now I don't have a Dr. appointment for the radiation but that will be coming with time. Right now I am going to try and rest to recovery faster back to things.
Thanks so much for the comments, visitors and of course the meals. It helps to not have to worry about that so thank you so much.
Posted by Ro's Lumpy Breast at 9:19 AM 15 comments
Tuesday, July 8, 2008
So I thought I would do I little update on my evening. I started to have more pain as the night went on so we tried to get that under control last night. I had dinner felt great and then they gave me some morphine for the pain to get it under control. We started out with 1 ml. I guess that is quite low. I felt a little sick but still having pain so the nurse gave me 1 more ml diluted and with in seconds throw up. I guess I have an allergy to morphine. So no morphine for this girl. We tried two different other pain medication. We found a winner it worked so much better it is the Lora tab. I was able to have a bowl of ice cream. The pain was a little more bearable and was able to get a little sleep. I got up this morning and at 5:30 had the CT scan and got that over with. Now I am having some breakfast and will wait for the doctor.
Posted by Ro's Lumpy Breast at 6:26 AM 16 comments
Monday, July 7, 2008
Surgury Update
We haven't been able to access the Internet. The wireless hasn't been working. So for an update the surgery was successful and no complications. Rochelle is a trooper. When the doctor came out to the waiting room, he told us she did just fine and she was already talking. "not Rochelle" He said that he thinks the tumor is breast cancer and it all came out just fine. He suggests she should do radiation eventually. After a couple of hours in ICU the doctor came in to see how she was doing. He said she is doing so good he thinks she will be able to go home tomorrow. He wants her to have a CT scan tomorrow to make sure everything is OK and there is no bleeding. If that comes back good he thinks he will release her, but she is putting up a fight. She wants to stay for a couple more days so she can have a little mini vacation.
Right off the bat she asked for 7-up and ice. At 3:00 she had some chicken broth and about 6:00pm she was able to eat a meatball sandwich. She is doing good not feeling sick. After surgery the doctor also said she was probably going to feel nausea and might have to throw up. But she has been able to keep everything down.
She is my super hero.
Thank you for all your thoughts and prayers. We appreciate it.
Posted by Ro's Lumpy Breast at 6:39 PM 13 comments
Sunday, July 6, 2008
Update before the hospital!
So I have been up early enough and had enough time in the mornings to post but Ryan doesn't like listening to the typing at 4:30am. Once things get going in the morning it seems that the last few days have been filled with lots of family and fun. So I thought I would take a few minutes and update.
I had a few different phone calls and questions today that I thought I had written about here on the blog. I am not sure if I haven't or I am just not a good communicator. I ready know I am not a good communicator so I am guess it is more that.
Anyway to let you know yes I am having surgery tomorrow at 7:30 am at Kadlec Hospital with Dr. Fewle. I will be there by 5:45 the surgery can last 1 1/2 to how every long. He said figure on about 3 hours. So Ryan shouldn't know much before 10:30 I am guessing. We are taking a laptop to update new news. We probably wont call everyone not even all family. I could be wrong but Ryan is not much for talking on the phone. So we will try to keep the blog updated. We should know right away if it is the breast cancer. If not it will be a few days before they will know. They will also do a CT scan right away to make sure they got everything. Anyway we should hopefully be updating often on the blog or at least once a day.
I also wanted to say a thank you to all the prayers they mean alot to me. I wish I was more witty and good with words to let you know thanks and how I am doing. But if you know me I am a straight shooter. So to let you know I am doing well not nervous and am very sure things are going to go really well.
Also an update on the toe. Ryan was looking at the blog today and is like your toe doesn't even look bad on the blog. It is much uglier and black in person. It is fine and not a big deal. It does look bad and only hurts when the kids step on it.
O.k. I do want to post a few family pictures and let you know we had such a great weekend with family and friends. I know I already said it but I love holidays or any good reason to spend time with family and friends.
We decided on a pancake breakfast at IHOP and saw a few other friends decided the same thing.
So here we are again out front of IHOP. Can you tell my hair is growing in? The doctor said they aren't going to shave my head just the spot where they cut so I shouldn't have to start over.
We than headed out to Basin City for there parade. The kids love this parade all the candy. Cole rode on a float in the the parade.
This is Cole after the parade. Cole soaked his dad from the float so his dad then after the parade dunked Cole in the water bucket. Cole was not happy I am sure you can tell.
This is Kamden riding a bike with no training wheels for the first time.
This was the next item on the list for Friday. We got a new water slide for summer but the kids just don't enjoy it was much as they have the pool. So we put up a pool. This was Ryan and the boys project while we had a family BBQ. This is everyone pitching in.
Here is Ryan working on his project for the day.
We all had a good time. The pool was put up and kids enjoyed the slide and the adults enjoyed lots of food and homemade ice cream along with cards.
Here is a picture of my sister Jillian. The baby!
Here is my sister Kendall number 4 and Kim number 2.
We spent all Saturday from sun up to sun down with family and friends doing what we love the most lately boating!
We had a great last day of vacation. Sunday is a favorite day at our house more family time. I was up early and even made waffles. I haven't done that since moving to the new 9am time change. To early for me to get up and do waffles and get the kids ready for church. Of course on steriods I have more up time and more energy. So the kids were so excited I like to make waffles on Saturdays and Sundays when we are home. Anyway we went to church and then home for Family Home Evening. We had a lesson on the 4th of July and why we celbrate the fourth. We then made our own flags and we had our own wars. We enjoyed building towers, thumb wars and a gunny sack race. We then ended the day with another BBQ at my parents. We have most Sunday dinners with my family on Sunday's. They were all nice to me and played cards. Ryan and I love to play cards. Most of my family doesn't enjoy it as much.
Posted by Ro's Lumpy Breast at 11:13 PM 12 comments
Thursday, July 3, 2008
Funny toe
O.k. lets see if I can finish one thought well posting today.
So to start I am feeling good today for those that are wondering. I have been busy getting thing put together for the weekend and the next coming weeks. I was able to get the grocery shopping done and the lawn mowed yesterday. And today I was able to get the house cleaned. So it doesn't need to be done for a while. I have to say for those that know me I am getting better about the cleaning. I am not cleaning all the time. Just picking up and doing a little hear and there. Anyway enough of that.
I didn't get to sleep last night until 2:30 or 3am then Ryan was up at 4:30 so I was up soon after to clean. I usually lay in bed and try to go back to sleep but I figured I wasn't sleeping and Ryan was gone so why not get up. I would like to say I think I am anxious but I don't feel anxious or nervous. Just like I can't get ready enough for the weeks to come and my mind doesn't stop running.
So that is probably why there are no compete thoughts on the blog I am running on not much sleep and seems to be bouncing around. Sorry.
O.k. and I had a funny....sad.... crying.... moment last night. It was 8 or 9 last night and I was hungry and went down stairs to get some food. Well on my way down the stairs I fell. I am not sure what happened but I fell. I skinned my elbow and rolled my toe. I think I landed on it on my toe while it was backwards. Anyway I took some pictures. I am not sure you can even tell. Anyway it really hurt and I decided it couldn't have been a better time. I had some Hydrocodone(o.k. I know you already know but I am not a speller) handy and took one and the pain went away but this morning it was sore and very pretty. So it was a moment of what an idiot and really!
Posted by Ro's Lumpy Breast at 1:36 PM 9 comments
Wednesday, July 2, 2008
Nothing new today
O.k. so nothing really new don't get to excited about this update. Just wanted to let everyone know I am feel well today the steroids seem to work good as long as I stay on a schedule. As it gets close to time to take them I feel a little pressure but nothing like last Friday. I am also looking forward to the 4th and all the excitement. I love holidays and time to spend with my family. I know we already do most everything together but it is still a great excuse.
I don't know if I already told this story but I wanted to add it in. So bear with me. We were coming home the other day and we could see the Richland golf course. Cole says to me, "Why are all the guys out golfing where are there families"? We then talked about how for our family it is a family thing that we like to do as a family but that most people don't see it that way. He was a little confused because we pretty much only do it as a family. I love that he thinks we should always be doing things together. I am sure it will change but for now I am thankful he loves to do things with us all.
I also wanted to say at this time I really don't need anything but I well let you know after the surgery. I will probably need help after the surgery with meals. If you are looking to help you can call Nicole and let her know you can bring in a meal after the surgery. I think we might starve if I had to leave the cooking up to Ryan. O.k. we wouldn't strave we would just be eating macaroni every night. I am sure the kids wouldn't mind that. The funny thing is I know he can cook he did before we were married. But he now claims he can't and hasn't. I can't complain he is so good at so many other things if he doensn't want to cook that is o.k. in my book.
Posted by Ro's Lumpy Breast at 7:23 AM 8 comments
Tuesday, July 1, 2008
Dr. Fewel
I am so tired. I think it is from the relief of finally knowing what is going to happen. I have to say I got so much information today. I will do my best to let you know what the Dr said.
I had a Dr. appointment with Dr. Fewel. We were there at 8:45 but we didn't get in to see him until 9:45 maybe 10am. That is so normal for all or most of our Dr.'s appointments. I am getting use to Dr. time. They never run on time and everything is an emergency. So basically nothing is an emergency I guess. I actually don't mind waiting this way Ryan and I get to visit and talk about the magazines we are looking through. I was starting to miss visiting with him with no more chemo and the fact that it is summer and he is busier.
When Dr. came in he asked about my symptoms and what I have had done and did a little physical exam. Then we headed to his office to look at the MRI pictures. I have to say we talked alot about the pictures. It is really hard to go over all that information with out the photo or images. But I will give you the jest of what we talked about.
The surgery will be in Monday morning. Which I was not very excited about I wanted done now. Then the more I thought about it I know it was the best. This way I can get my house cleaned, groceries bought and spend the 4th with my family. So I am relieved that I can focus on those things for now.
There could be somethings to worry about but as we talked about them he really didn't think there is anything to worry about. Nothing is for sure but he gave me best case and kind of worse case.
So best case I will be in surgery for hour 1/2 to 3 hours but it could be longer. It just depends on what they find. Which we went over all that. Then he said I would be in the hospital 2 or 3 days best case which is what he is counting on. Then if I get sick or something happens in surgery it could be long. I told Ryan that isn't a long enough vacation 2 days. I might have to see if they will let me stay longer. j/k Then I will be no lifting and no driving for at least 2 weeks. Then at his 2 week appointment he will let me know better when I can start to do things.
Were this tumor is it affects my balance and mobility. I think that is better than on the top which would affect memory and other more major things.
He said this is not normal for breast cancer and not normal for just a tumor. He said it doesn't really fit anything that he can pin down. So once they take it out and biopsy it he will know better what we are looking at.
He recommended radiation after the surgery if it is the breast cancer. We will see I am not sure. There are positives and negatives. I am still thinking about that one. Radiation has long term effects when you are talking brain but the risk of the cancer not returning is better if I do the radiation.
Like I said we went over some concerns and some positives that are hard to go into with out pictures. So for know I think that is all I can remember.
We spent the next hour or two at the hospital getting registered and doing blood draws and going over what will be going on in the hospital. I think that is so funny. I am re registered every month but when I go for any MRI, CT or anything else they re register me, refill out paper work. Does that make any sense.
I know I say it all the time but I really feel like I need to say it more often. Thank you for all the well wishes and comments. It is nice to turn on the computer and hear from so many friends old and new. Thank you for your thoughts and the time you take to post. And I know that there are a few of you out there that don't post but read thank you too.
Posted by Ro's Lumpy Breast at 3:08 PM 6 comments
Wide Awake!
Well I have been up since 5am. Usually I lay in bed and try to go back to sleep and some times do for a little while longer. All I could think about is all the emails I needed to get out. So I have been up since 5am emailing and reading blogs. I know what a great waste of time. But when you can't sleep what better things do I have to do. Oh, I guess I could have been reading or doing something I am sure way more productive. Anyway I think I am a little anxious about what is going to happen this morning. I am sure that is why I am wide awake. While tired but wide awake. Is that possible? I wont be surprised if I come home with just more question and no answers and more of a waiting game. It seems to be that way. You find something out or have something done and then you have to wait. I think that is the hardest part. I think this time it is the hardest part. I want to get moving and get this brain tumor out. So we can go back to all of our fun family summer activities. Sorry for rambling can you tell I am tired. I need to go and start getting the kids ready to go this morning. I am hoping for not such hot weather today. Hot but not overly hot like the yesterday.
O.k. so Cole is up and guess what he just reminded me. Can you ask the doctor to take lots of pictures of your brain. He said that to me last week and I forgot. So this morning he is reminded me to ask the Dr. to take lots of pictures of my brain. I love kids they help you stay happy and normal what ever normal is right.
Oh, I wanted to do a shout out last Friday and just haven't gotten to it. I wanted to do a shout out to Heidi Wilson!!! Can you believe she is done with her 8 rounds or chemo. Wait to go girl you made it. I hope the side effects this last time weren't to bad. Just raidation left we hope. I am hoping for not so many side effects for you.
Posted by Ro's Lumpy Breast at 7:22 AM 9 comments
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.
Posted by Ro's Lumpy Breast at 11:13 AM 4 comments
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.
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
Saturday, May 24, 2008
Flu no Flu!
Friday I was finally able to go shopping after being home for 3 days. My family was so happy there was finally food in the house. But later in the day I started feeling sick. Like I had the flu. I had a fever and was ache all over and my bones ached. I was thinking great I have gone this long with out being sick now I am sick. Then all of the suddon I woke up in the middle of the night and remembered that the nurse told me I could have flu like symtoms from the Herceptin. I didn't before so I didn't think I would this time but I guess by it self it can cause the flu like symtoms. So I was so happy when I woke up this morning and the fever and aching was gone. I am hoping that doesn't happened everytime. That could get old every two weeks. I guess I have to remember it is better than having cancer.
Posted by Ro's Lumpy Breast at 2:12 PM 5 comments
Busy Day/ Number still going down!
So Thursday I had a long day of appointments. I started off the day with a PET scan that started at 7:45 and went for three hours. I was able to take about an hour nap while I was there. They gave me 2 Xanx this is to help with the small space they put you in during the test. I only tell you this because it plays a part later in the day. So after the scan I had just enough time to run home because I had forgotten my cell phone. Then I headed back over to the hospital to have my infusion of Herceptin and Zometa. They also gave me Bendryl with my meds. I only tell you this because again it plays apart later in the day. As soon as I was done at the hospital I run by my mom's to pick the kids up and then headed down to Dr. Kenzie's. Kamden, Ryan and I all had appointments at 3pm. I couldn't wait until another week to see Dr. Kris my back was out and killing me. Anyway I on the way home I could barley keep my eyes open. When I got home I took a nice very long nap and got up just in time to go right to bed. I think the Xanx and the Zometa knocked me out or relaxed me just enough that I slept. Oh, I almost forgot I got my CA2729 counts back when I went into the hospital for my infusion. It is 29! The nurse said the vacation must have done me some good. I don't think she understands how not relaxing a vacation is with kids. But I am so happy to see the number is still going down even off chemo.
Posted by Ro's Lumpy Breast at 2:02 PM 1 comments