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.
Friday, September 26, 2008
Posted by Ro's Lumpy Breast at 12:16 PM
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
Monday, September 8, 2008
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
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
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
Posted by Ro's Lumpy Breast at 10:09 AM
Thursday, September 4, 2008
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