Aly had her Halloween party and parade and it was beyond adorable!
Afterwards we did lunch and then we went and watched the young Marine, Jordan Bastean, return to Pekin after losing his life fighting in the war a little over a week ago. It was so sad and my heart goes out to his family and friends during this difficult time.
I was called this morning from a nurse about the issues with my port. They wanted me to go in and have it checked out today so I went in and saw a NP named Judy and she said she thinks the line has just moved from all the scar tissue I have built up from all the procedures I've had done (2 picc lines, liver biopsy, having the port placed, etc.) and said she thinks it's fine but she wants for me to have it checked out more tomorrow (at my normal scheduled appointment) by another NP and to see how it does with blood flow. So we'll see...I'm hoping it's fine. I'm so used now to having my port accessed and used for everything that when it was mentioned about me possibly having to have my blood drawn peripherally I seriously cringed.
The kids went up to their Great Grandparents tonight for trick or treating and had a great time spending that time with everyone. And afterwards I took them to do some more trick or treating and then brought them home. We brushed their teeth extra good from all that candy they had tonight and they crashed! Long day!
I'm exhausted also. So I'm off to bed. Hoping all looks good tomorrow with my port and my counts!!
Monday, October 31, 2011
Sunday, October 30, 2011
Port issues...
I haven't posted in a few days. I've had a pretty low key week which has been nice.
Until last night. I stayed up late and watched a movie in bed and then after it was over I got ready to go to sleep. I got nice and comfortable and then scratched my neck and noticed the "line" from my dual power port in my chest seemed like it was bunched up (I don't know the medical term for this so I just call it the line, it's what connects my port to my jugular vein). So much for starting to doze off, I went into full panic mode and woke Justin up and he said he could definitely tell a difference in it also. I could literally wrap my fingers around the line where it felt like it was bunched up. I wasn't having any pain with it but still very concerned, so I called the after hours line and talked to Dr. Shawn Seibert. It was late (2 A.M.) and I feel bad calling and waking him up (he was the on call doctor) but this was something I just couldn't chance in case I needed to head to the hospital. He said that as long as I'm not having any pain at the location or showing obvious symptoms that it's okay and to call Dr. Vukov's office on Monday. He said it does happen, ports can move or become dislodged. He said my doctor will take a look at it and then decide if I need to have surgery to have it re-attached. AHH!!
I've never had any issues with my port and it's definitely something I am still so glad I've had done. It's used to draw blood from, for when I have blood and platelet transfusions, and to receive chemo treatments. Some people are pretty surprised to hear I have a dual port instead of single but my oncologist said this one would be best for me due to all the chemo I would be receiving. SO much easier than constant iv's.
So I'll be calling first thing tomorrow morning to try and get this all taken care of...
I'm off to bed. Tomorrow is Halloween! I'm a room Mom and Aly has her school party and then parade of all the preschoolers in their costumes and I'm pretty excited! : ) Then tomorrow night we're taking the kids to see family and for trick or treating.
Kim
Until last night. I stayed up late and watched a movie in bed and then after it was over I got ready to go to sleep. I got nice and comfortable and then scratched my neck and noticed the "line" from my dual power port in my chest seemed like it was bunched up (I don't know the medical term for this so I just call it the line, it's what connects my port to my jugular vein). So much for starting to doze off, I went into full panic mode and woke Justin up and he said he could definitely tell a difference in it also. I could literally wrap my fingers around the line where it felt like it was bunched up. I wasn't having any pain with it but still very concerned, so I called the after hours line and talked to Dr. Shawn Seibert. It was late (2 A.M.) and I feel bad calling and waking him up (he was the on call doctor) but this was something I just couldn't chance in case I needed to head to the hospital. He said that as long as I'm not having any pain at the location or showing obvious symptoms that it's okay and to call Dr. Vukov's office on Monday. He said it does happen, ports can move or become dislodged. He said my doctor will take a look at it and then decide if I need to have surgery to have it re-attached. AHH!!
I've never had any issues with my port and it's definitely something I am still so glad I've had done. It's used to draw blood from, for when I have blood and platelet transfusions, and to receive chemo treatments. Some people are pretty surprised to hear I have a dual port instead of single but my oncologist said this one would be best for me due to all the chemo I would be receiving. SO much easier than constant iv's.
So I'll be calling first thing tomorrow morning to try and get this all taken care of...
I'm off to bed. Tomorrow is Halloween! I'm a room Mom and Aly has her school party and then parade of all the preschoolers in their costumes and I'm pretty excited! : ) Then tomorrow night we're taking the kids to see family and for trick or treating.
Kim
Wednesday, October 26, 2011
Finally!
Feeling better (for the most part!). My body is pretty achy right now from going off the steroid but other than that things are okay. No appointments this week, I seriously cannot remember having a week without a doctors appointment!
Aly had her Halloween dance/costume party last night. She loved it! I'll post a few pictures soon.
I was hoping Connor would nap today because he has a major case of the crankies but I don't think that's going to happen. So I guess instead him, Aly, and I will all watch Tangled together for the millionth time.
: ) Kim
Aly had her Halloween dance/costume party last night. She loved it! I'll post a few pictures soon.
I was hoping Connor would nap today because he has a major case of the crankies but I don't think that's going to happen. So I guess instead him, Aly, and I will all watch Tangled together for the millionth time.
: ) Kim
Sunday, October 23, 2011
The house is quiet...
Both kids are sound asleep. Justin is asleep. I have 20/20 that I recorded the other night on in the background just for a little bit of noise. But my mind is just running.
I'm not ready for the weekend to be over. They always go by way too fast.
Yesterday didn't go as planned. I met up with my three sisters to decide on what headstone we wanted for Mom's grave (my brother said he wanted to leave this up to us girls to decide on so he didn't go with). We all agreed on one that we loved but then one changed their mind so nothing ended up getting ordered. It was tough. It was tough even walking in that place knowing what we had to do, but then leaving and knowing that what was supposed to get accomplished didn't was even harder. It's all just so final. I don't have any hard feelings towards my sister Connie over this, she is grieving in her own way. As we all are. I miss my Mom every minute of everyday. But one thing I always think about is that Connie took care of my Mom for the most part at her house before she was hospitalized the last time. As everyone knows, none of my siblings are close at all. Even though we very rarely talk I still wonder how each is doing all the time, and I think of Connie. She has to be having such a hard time with this because she has to walk back into the house that our Mom was at so much of the time towards the end of her life. Again, I don't harbor any hard feelings towards her. We all need to do this for our Mom, and I know it will get done. But it's just tough.
I'm still sick with this cold. I'm assuming that I'm not getting better as quick as I usually do when I have a cold is because of being on the steroid. It seems like one day I'll feel a little better and then the next day I'll feel kinda crummy again. But I am off of it now so we'll see how I feel tomorrow and if not better than I'll call Dr. V's.
I always worry. I can't help it, I've always been this way.
I ended up starting to show signs right around this time last year of being sick - but I didn't know it was cancer. My symptoms all seemed like a bad cold that just wouldn't go away. And then the enlarged lymph nodes appeared on my neck and I think I "knew" it was something more. I know my oncologist is right on top of everything and all is fine. But my mind still wanders back to a year ago. I can't live my life living in fear of the "what if's" and so on but still. I'm making sense in my own mind right now, not so sure I'm getting it explained so well though here. Do you know what I'm saying?
But one thing I do know for sure if that I am incredibly thankful to be here. To worry and all. ; )
I'm tired. Aly has school in the morning and I think I'm going to try and get some sleep.
Goodnight.
I'm not ready for the weekend to be over. They always go by way too fast.
Yesterday didn't go as planned. I met up with my three sisters to decide on what headstone we wanted for Mom's grave (my brother said he wanted to leave this up to us girls to decide on so he didn't go with). We all agreed on one that we loved but then one changed their mind so nothing ended up getting ordered. It was tough. It was tough even walking in that place knowing what we had to do, but then leaving and knowing that what was supposed to get accomplished didn't was even harder. It's all just so final. I don't have any hard feelings towards my sister Connie over this, she is grieving in her own way. As we all are. I miss my Mom every minute of everyday. But one thing I always think about is that Connie took care of my Mom for the most part at her house before she was hospitalized the last time. As everyone knows, none of my siblings are close at all. Even though we very rarely talk I still wonder how each is doing all the time, and I think of Connie. She has to be having such a hard time with this because she has to walk back into the house that our Mom was at so much of the time towards the end of her life. Again, I don't harbor any hard feelings towards her. We all need to do this for our Mom, and I know it will get done. But it's just tough.
I'm still sick with this cold. I'm assuming that I'm not getting better as quick as I usually do when I have a cold is because of being on the steroid. It seems like one day I'll feel a little better and then the next day I'll feel kinda crummy again. But I am off of it now so we'll see how I feel tomorrow and if not better than I'll call Dr. V's.
I always worry. I can't help it, I've always been this way.
I ended up starting to show signs right around this time last year of being sick - but I didn't know it was cancer. My symptoms all seemed like a bad cold that just wouldn't go away. And then the enlarged lymph nodes appeared on my neck and I think I "knew" it was something more. I know my oncologist is right on top of everything and all is fine. But my mind still wanders back to a year ago. I can't live my life living in fear of the "what if's" and so on but still. I'm making sense in my own mind right now, not so sure I'm getting it explained so well though here. Do you know what I'm saying?
But one thing I do know for sure if that I am incredibly thankful to be here. To worry and all. ; )
I'm tired. Aly has school in the morning and I think I'm going to try and get some sleep.
Goodnight.
Friday, October 21, 2011
Random
My cold seems to be getting a little better. I'm so glad!
My mouth sores are rearing their ugly head again. I totally forgot about making my mouth ice cold when I had the Vincristine on Tuesday. So far they aren't too bad and are just on the inside of bottom lip.
I am seriously in love with the new show 2 Broke Girls on CBS. That show cracks me up. I just wish it was longer than 30 minutes once a week. I think I say that everytime I watch it.
Today I slacked big time and let Aly watch a lot more tv in one day than she usually does. Neither her or Connor watch much tv but since I wasn't feeling the best this morning I let her watch two Disney movies. Aladdin and Tangled. She LOVES both and is currently obsessed with Princess Jasmine and Rapunzel. And every other Disney Princess out there.
I'm making Christmas lists for the kids. Family members have been asking and I feel so excited to be doing it this year.
Brr...it's definitely getting cold out. I'm not ready for cold weather. At all. I think we might need to get the kids winter coats this weekend.
Aly's Halloween costume is so pretty! I'm anxious to post pics but I need to find her some shoes to match it before I take any pictures. For the last couple of years I've bought Aly cute glittery shoes from Target. They come in assorted colors. I'm thinking about picking her up a pair from there that will match her costume and I know she'll get plenty of wear out of. And Connor's - I might have already mentioned it but his is perfect for him! He even does this perfect little "roar" to go with it. And nope, he isn't going to be a lion. That was last year. : )
I'm thinking about trying to make Chicken Enchilada soup *possibly* tomorrow. I love it from Chili's and I have the exact recipe. Everyone that knows me knows I do not like to cook unless it involves a crockpot so this sounds pretty easy.
Without going back to my last blog I can't remember if I had mentioned it or not, but Dr. V started me back on the steroid, Dexamethasone, at this last weeks appointment. My sleep is so out of whack right now. I take two in the morning and one in the evening and so sleep is not going very well. Usually I have a huge spurt of energy while on it but not this time. I'm pretty sure it's from being sick this week. I'll go off of it on Sunday and if things go like they usually do, I'll probably be hurting pretty bad a few days afterwards for a couple of days. Just body aches mostly from going off of it.
...
My sisters and I are meeting up this Saturday morning to order my Mom's headstone. I'm not ready to do this. But it's time. Last week I was told that even if it was bought then than it still wouldn't be able to be placed until atleast January. I know Saturday is going to hard. Justin offered to go with but this is just something I feel like I need to do. None of my siblings really get along and I know he just wants to be there to support me but I just feel like I need to do this "on my own". And I'm thinking about possibly going to Bloomington afterwards to the cemetery.
I really miss my Mom.
Okay, I'm going to try and get some sleep.
My mouth sores are rearing their ugly head again. I totally forgot about making my mouth ice cold when I had the Vincristine on Tuesday. So far they aren't too bad and are just on the inside of bottom lip.
I am seriously in love with the new show 2 Broke Girls on CBS. That show cracks me up. I just wish it was longer than 30 minutes once a week. I think I say that everytime I watch it.
Today I slacked big time and let Aly watch a lot more tv in one day than she usually does. Neither her or Connor watch much tv but since I wasn't feeling the best this morning I let her watch two Disney movies. Aladdin and Tangled. She LOVES both and is currently obsessed with Princess Jasmine and Rapunzel. And every other Disney Princess out there.
I'm making Christmas lists for the kids. Family members have been asking and I feel so excited to be doing it this year.
Brr...it's definitely getting cold out. I'm not ready for cold weather. At all. I think we might need to get the kids winter coats this weekend.
Aly's Halloween costume is so pretty! I'm anxious to post pics but I need to find her some shoes to match it before I take any pictures. For the last couple of years I've bought Aly cute glittery shoes from Target. They come in assorted colors. I'm thinking about picking her up a pair from there that will match her costume and I know she'll get plenty of wear out of. And Connor's - I might have already mentioned it but his is perfect for him! He even does this perfect little "roar" to go with it. And nope, he isn't going to be a lion. That was last year. : )
I'm thinking about trying to make Chicken Enchilada soup *possibly* tomorrow. I love it from Chili's and I have the exact recipe. Everyone that knows me knows I do not like to cook unless it involves a crockpot so this sounds pretty easy.
Without going back to my last blog I can't remember if I had mentioned it or not, but Dr. V started me back on the steroid, Dexamethasone, at this last weeks appointment. My sleep is so out of whack right now. I take two in the morning and one in the evening and so sleep is not going very well. Usually I have a huge spurt of energy while on it but not this time. I'm pretty sure it's from being sick this week. I'll go off of it on Sunday and if things go like they usually do, I'll probably be hurting pretty bad a few days afterwards for a couple of days. Just body aches mostly from going off of it.
...
My sisters and I are meeting up this Saturday morning to order my Mom's headstone. I'm not ready to do this. But it's time. Last week I was told that even if it was bought then than it still wouldn't be able to be placed until atleast January. I know Saturday is going to hard. Justin offered to go with but this is just something I feel like I need to do. None of my siblings really get along and I know he just wants to be there to support me but I just feel like I need to do this "on my own". And I'm thinking about possibly going to Bloomington afterwards to the cemetery.
I really miss my Mom.
Okay, I'm going to try and get some sleep.
Wednesday, October 19, 2011
Feeling alright
Yesterday was my bloodwork, doctor appointment, chemo, and 14th spinal tap. Everything went fine with all of it. Dr. Vukov said he's very impressed at how well I'm doing and handling all of my treatments. My next appointment is in 2 weeks with the NP Laura and that is mostly to check my counts and make sure I'm doing alright. My counts have dropped a little bit but Dr. V isn't too concerned, he said it's from the chemo pill I'm on here at home, 6 MP (Mercaptopourine). And I also started the steroid back up again, so I'm on Dexamethasone for days 29-33. I really should make a list of stuff I want/need to get done right now because each time I've been on a steroid in the past it's given me a ton of energy. And then I go off and crash.
I'm still sick with my head cold. Mostly just sinus drainage and I'm very limited on what I can take because I'm on Keppra and it has so many drug interactions. But other than that I'm not feeling too bad. My back is a little sore from my spinal tap but I think I've just learned what to expect from having so many. My next one is scheduled for December 13th and the one following is scheduled for January 10th. Dr. Chee is the one that performed it yesterday and he's great, he's quick and makes me feel very comfortable.
My friend Carrie picked Aly up from here at home this morning and took her to school so I wouldn't have to go out. She has a daughter right at the same age as Aly and they are both in the same preschool class which is nice. Aly is crazy about them! She's planning on taking the girls to McDonald's for lunch after school and then dropping her back off here at home. This way I can have a little bit more of time to rest today. Right now Connor is driving his little Mickey Power Wheels car through the upstairs of our house (I have a gate up so he can't decide to go for a ride down the stairs).
Aly's Halloween costume is adorable, it was just delivered a few days ago. I'm excited for Halloween! And I just love Connor's - it fits his personality so well! ; ) But at the rate we are going I'm hoping we won't have snow on Halloween. Fall is definitely my favorite season but I'm not ready for winter! I think it's about time to shop for winter coats though for the kids.
Alright, time to get going. I'm going to play with Connor some (now he has on his sister's Minnie Mouse ears, oh my!) and then possibly put him down for an early nap before Aly gets home.
*If you would like, leave me a comment on here or send me an e-mail and I'll add your e-mail address to the list so when I post a new blog you'll get a notification.*
I have it already for Butch & Carrie, Jack & Mary Lou, and Don & Marge.
Have a good day!
Monday, October 17, 2011
Blah.
I woke up this morning with a head cold. Scratchy throat and a slight cough. But as the night has gone on I've begun to feel even worse. I'm hoping I'll feel a little better tomorrow.
Tomorrow I also have bloodwork at 8:20, appointment with Dr. Vukov at 9:20, chemo (Vincristine), and then a spinal tap at Methodist. A long day ahead!
I really should be sleeping.
But tonight I keep thinking about Lisa Schmidgall and her family. I knew she had gotten considerably worse in the last week. And then her husband posted an update on her blog yesterday afternoon saying she had taken a turn for the worse and wouldn't make it much longer. Such a sad situation. If you aren't familiar with Lisa, she was a teacher here in Pekin and was diagnosed last year with Stage 4 lung cancer. She has two children, right about the exact same ages as our kids. She was only 33. She passed away today. Just so sad. Please say a little prayer if you are reading this for comfort for her family during this incredibly difficult time. I'd appreciate it.
I'm going to try and get some sleep now.
-Kim
Sunday, October 16, 2011
Our weekend...
Consisted of a lot of this...
The finished product...the kids' painted and decorated pumpkins.
Oh, and this.
I can't forget to post about this. Especially since it's not something that just happens everyday...
We all spent some time with Bogdan, the 5 week old white tiger.
The picture above is so cute, even if Connor is giving the lady that works there a not very nice look... ; ) He just wanted in on the action also!
We spent the afternoon at Brown's OakRidge Zoo in Smithfield, IL.
The finished product...the kids' painted and decorated pumpkins.
Oh, and this.
I can't forget to post about this. Especially since it's not something that just happens everyday...
We all spent some time with Bogdan, the 5 week old white tiger.
The picture above is so cute, even if Connor is giving the lady that works there a not very nice look... ; ) He just wanted in on the action also!
We spent the afternoon at Brown's OakRidge Zoo in Smithfield, IL.
What a great experience! : )
Wednesday, October 12, 2011
Thoughts...
I'm always terrible at coming up with titles for my blog posts...
The radiation has been put on hold for a couple of weeks.
I went in and had bloodwork done today and met with my oncologist to have him answer some of my questions regarding this upcoming radiation. I told him exactly what was on my mind and all my worries/fears about having it done and we talked about all the risks involved. He reassured me and also told me he wants to put this radiation on hold for now and wants for me to meet back up with the radiation oncologist at Methodist, Dr. Carpenter, and have him go over things better for me before starting it up. So instead of going in tomorrow morning for my appointment for the Cat scan and to have the mask made and marked I'll be scheduling another meeting with Dr. Carpenter.
Dr. V did answer most of my questions but he did tell me he doesn't have all the specific answers I need and that is why he wants me to wait until I meet back up with Dr. Carpenter again. Another reason is because since I was originally supposed to start this up next Monday and my new round of chemo is supposed to start this coming Tuesday which includes Methotrexate orally, Vincristine, and then a spinal tap with Methotrexate also - he said he considers all that more important than the radiation right at this time and doesn't want me to miss that. And with the Methotrexate I'll need a little bit of time for it clear out of my system or could have some nasty side effects. So now it looks like it will be around the first of November before starting.
Tonight Aly had tap and tumbling. She did so good! I loved watching her! Justin has been taking her because lately by the time her class starts I'm just exhausted. But tonight was watch week and I'm so glad I went and watched, and Justin's Parents went with also while he stayed home with Connor.
Aly brought my Mom up tonight just out of the blue...she told me she wanted to go spend the night at MeMaw's house. And it hit me, hard. I wasn't expecting it and just didn't know what to say... I asked her where MeMaw was at and she told me that she went to Heaven because she had too many boo boo's and that they just weren't getting better. Oh goodness... My sweet girl.
My sweet 4 year old that just is too young to understand.
I've had a decent couple of days but I'm missing my Mom so much tonight. We went to Bloomington this last Thursday and I went to my Mom's grave for the first time since her funeral. It was so rough. I took a beautiful bouquet of flowers that I know she would have loved and one pink and one blue balloon from each of the kids and tied it on to the bouquet. I talked and cried and talked some more...but it's not the same.
I miss her.
The radiation has been put on hold for a couple of weeks.
I went in and had bloodwork done today and met with my oncologist to have him answer some of my questions regarding this upcoming radiation. I told him exactly what was on my mind and all my worries/fears about having it done and we talked about all the risks involved. He reassured me and also told me he wants to put this radiation on hold for now and wants for me to meet back up with the radiation oncologist at Methodist, Dr. Carpenter, and have him go over things better for me before starting it up. So instead of going in tomorrow morning for my appointment for the Cat scan and to have the mask made and marked I'll be scheduling another meeting with Dr. Carpenter.
Dr. V did answer most of my questions but he did tell me he doesn't have all the specific answers I need and that is why he wants me to wait until I meet back up with Dr. Carpenter again. Another reason is because since I was originally supposed to start this up next Monday and my new round of chemo is supposed to start this coming Tuesday which includes Methotrexate orally, Vincristine, and then a spinal tap with Methotrexate also - he said he considers all that more important than the radiation right at this time and doesn't want me to miss that. And with the Methotrexate I'll need a little bit of time for it clear out of my system or could have some nasty side effects. So now it looks like it will be around the first of November before starting.
Tonight Aly had tap and tumbling. She did so good! I loved watching her! Justin has been taking her because lately by the time her class starts I'm just exhausted. But tonight was watch week and I'm so glad I went and watched, and Justin's Parents went with also while he stayed home with Connor.
Aly brought my Mom up tonight just out of the blue...she told me she wanted to go spend the night at MeMaw's house. And it hit me, hard. I wasn't expecting it and just didn't know what to say... I asked her where MeMaw was at and she told me that she went to Heaven because she had too many boo boo's and that they just weren't getting better. Oh goodness... My sweet girl.
My sweet 4 year old that just is too young to understand.
I've had a decent couple of days but I'm missing my Mom so much tonight. We went to Bloomington this last Thursday and I went to my Mom's grave for the first time since her funeral. It was so rough. I took a beautiful bouquet of flowers that I know she would have loved and one pink and one blue balloon from each of the kids and tied it on to the bouquet. I talked and cried and talked some more...but it's not the same.
I miss her.
Sunday, October 9, 2011
Wonderful weekend!
Justin told me this last week he bought tickets for us to go see Reba in Bloomington. Mostly for me, he's not a big fan of Reba. ; ) It was a HUGE surprise!! I've always wanted to see her in concert and she used to come to Peoria every year but hasn't in a long time. And he planned it all out and kept it as a secret for me. And this also included an overnight stay in a hotel.
We rarely get out so this was an extra special treat! Usually my counts are low and it's just not worth the risk of me getting sick so we don't go out. But right now I'm doing a chemo pill from home (6 MP) and my counts are good and this is before I'm supposed to start the radiation so this was perfect timing.
We went to Bloomington on Friday afternoon after dropping the kids off with Justin's Mom and Dad. And we went to the hotel room and got ready and then headed out to Outback for a great dinner. We both had steaks and they were SO good. Oh my goodness, soooo good. And after we went to the concert. We had really great seats but since nobody was sitting in the seats a few rows up from us we decided to move up before Reba came on so we could see even better. The Band Perry was the main opener for her, but a few other bands performed as well (Eden's Edge and Steel Magnolia). And afterwards, we went back to the hotel. It was a great night and we had such a good time! We very rarely get out just us two - we missed the kids like crazy but we knew they were having a good time with their grandparents. : ) And on Saturday we left and came home. I had such a great time and was so thankful for that special time with Justin. And I love that he completely surprised me with the little get-a-way. A very much needed break for us, from this long year we've had.
But I'm glad to be home, under one roof again with my little family. Feeling incredibly blessed and thankful.
We rarely get out so this was an extra special treat! Usually my counts are low and it's just not worth the risk of me getting sick so we don't go out. But right now I'm doing a chemo pill from home (6 MP) and my counts are good and this is before I'm supposed to start the radiation so this was perfect timing.
We went to Bloomington on Friday afternoon after dropping the kids off with Justin's Mom and Dad. And we went to the hotel room and got ready and then headed out to Outback for a great dinner. We both had steaks and they were SO good. Oh my goodness, soooo good. And after we went to the concert. We had really great seats but since nobody was sitting in the seats a few rows up from us we decided to move up before Reba came on so we could see even better. The Band Perry was the main opener for her, but a few other bands performed as well (Eden's Edge and Steel Magnolia). And afterwards, we went back to the hotel. It was a great night and we had such a good time! We very rarely get out just us two - we missed the kids like crazy but we knew they were having a good time with their grandparents. : ) And on Saturday we left and came home. I had such a great time and was so thankful for that special time with Justin. And I love that he completely surprised me with the little get-a-way. A very much needed break for us, from this long year we've had.
But I'm glad to be home, under one roof again with my little family. Feeling incredibly blessed and thankful.
Questions regarding radiation
I am scheduled for an MRI this Tuesday before starting the brain radiation therapy. I'm being honest here, this whole thing scares the heck out of me... My doctor, Dr. Carpenter, at Methodist had to tell me all the risks involved with it.
1.) I have a chance of memory loss with having this brain radiation. Dr. Carpenter said if I was 85 years old he wouldn't have even bothered mentioning it, but since I'm not even 30 yet he needed to. I'm terrified if this does happen I'll lose all the precious memories I have of everything from my life.
2.) I have a 1 in 1,000 chance of a new form of cancer developing from the radiation.
3.) As soon as I met with Dr. C he asked if I had help with the kids. Um...yes. He said I need to expect that I am going to have major fatigue from this. This scares me because the kids need me - they depend on me during the day to be well, their Mommy. If this does drain me how am I supposed to take Aly to school, and so on?
4.) Since this will focus only on my brain I will most likely develop cataracts within five years.
5.) Have you seen the mask I'll have to wear? And then basically be bolted down to the table so I can't move? Oh my. I've been told exactly what it will look like by my doctors so I'll know what to expect. But this scares me also. I seriously need a block on Google Images on my laptop. Okay, this last one is a little funny. ; ) Guess I'm just trying to find something a little humerous in this...
I plan on calling my oncologist's tomorrow morning and see if I can be fit in for even just a few minutes to talk things over with him before I start this next week. I'm scheduled to start this next Monday and then have my appointment with Dr. Vukov the following day. But I need to have my questions regarding all of this answered before I start it.
1.) I have a chance of memory loss with having this brain radiation. Dr. Carpenter said if I was 85 years old he wouldn't have even bothered mentioning it, but since I'm not even 30 yet he needed to. I'm terrified if this does happen I'll lose all the precious memories I have of everything from my life.
2.) I have a 1 in 1,000 chance of a new form of cancer developing from the radiation.
3.) As soon as I met with Dr. C he asked if I had help with the kids. Um...yes. He said I need to expect that I am going to have major fatigue from this. This scares me because the kids need me - they depend on me during the day to be well, their Mommy. If this does drain me how am I supposed to take Aly to school, and so on?
4.) Since this will focus only on my brain I will most likely develop cataracts within five years.
5.) Have you seen the mask I'll have to wear? And then basically be bolted down to the table so I can't move? Oh my. I've been told exactly what it will look like by my doctors so I'll know what to expect. But this scares me also. I seriously need a block on Google Images on my laptop. Okay, this last one is a little funny. ; ) Guess I'm just trying to find something a little humerous in this...
I plan on calling my oncologist's tomorrow morning and see if I can be fit in for even just a few minutes to talk things over with him before I start this next week. I'm scheduled to start this next Monday and then have my appointment with Dr. Vukov the following day. But I need to have my questions regarding all of this answered before I start it.
Procedures
I've finally compiled a list of procedures, etc. I've had done since being diagnosed in December. I don't have every single spinal tap and blood/platelet transfusion written down. But especially so in the beginning I would on average have 1-2 transfusions a month and I am currently at 12 spinal taps and have more coming up. And I don't have it listed but I have an appt. with my oncologist EVERY week, usually on Tuesday mornings.
I've been wanting to get this all documented so I'll have it to look back on and I've finally taken the time to go over all of it.
10/1/2010
Cbc - everything looks fine. Assured my symptoms (swollen lymph nodes, trouble breathing and signs of a cold) were not cancer. I had googled swollen lymph nodes and cancer was the first thing to pop up... (Later on my oncologist told us he thinks this came up around Halloween).
12/6
Appt. with Dr. D., my family medical doctor. I push for an x-ray. Still sick, not showing any signs of improvement.
12/7
Call from Dr. D himself, said radiologist called him from Methodist and said I needed to go in for a few days - possible pneumonia. Packed my bag and headed to Methodist. Had to stay the night, did bloodwork, wasn't told much.
12/8
Diagnosed with Acute Lymphocyctic Leukemia (ALL)
Thoracentesis - removed 1 1/2 liters of fluid from my right lung.
Echo cardiogram done
Met with my oncologist, Dr. Vukov, for the first time.
PET scan
12/9
Bone marrow biopsy
Central line placed (which ended up getting infected 3 times in the next month).
12/10
Started chemo
12/11
Haircut in the hospital
12/14
Chemo
12/17
Chemo - Rough day of it
12/
Major hair loss all of December
Numerous scans done
12/24
Was expected to be discharged that day - but as I was in the process of being discharged I had 5 seizures. Immediately moved to ICU. Obviously not discharged (very thankful it happened there and not at home in front of the kids!). Met with Neurologist, Dr. Dong, for the first time.
12/25
Moved back to Oncology floor so I could see the kids on Christmas Day and things were better with me. Seizures were caused from toxicity level of chemo drug (Asparaginase) to my brain.
12/27
Per doctors orders; all chemo was stopped. Liver enzymes had skyrocketed and they were worried about me possibly going into liver failure. Met with liver doctor.
1/4
2nd bone marrow biopsy
1/5
Met with physical therapist (they were worried about me losing strength and muscle from not being able to move around as much).
Also met with a nutritionist, as of then I was down 48 lbs. since 12/7 (I had no appetite at all and was constantly sick from the chemo).
1/7/11
REMISSION!!
Liver biopsy done (thru my jugular vein)
1/8 Discharged
Bloodwork 2 times a week after being discharged. But still no chemo; liver enzymes were still all out of whack.
2/22
Dual Lumen Powerport surgery (small port placed in chest for chemo).
3/1
Started chemo back up
Chemo went as follows:
4 days a week for 2 weeks. Then chemo 1 time a week for 2 weeks. Repeat. Repeat. Repeat.
4/12
Neupogin shot in stomach to increase white count.
Type and Cross at Methodist (always needed before I can get blood transfusions).
4/13
Blood and Platelets at Methodist
5/3
Spinal tap
Type and Cross
5/4
Blood (2 bags)
5/7
Mouth sores (first time having them) All from chemo (Methotrexate).
6/3
Spinal tap
Type and Cross
6/6
Blood and Platelets
6/28
3rd Bone Marrow biopsy
PET scan
Given a week off from chemo for counts to rebound.
7/1
Echo cardiogram done at Methodist
7/12
Spinal tap
7/26
Mouth sores are back
7/30
Was told to expect hair loss, again. Started coming out in clumps today.
8/6
Now down to very little hair.
8/8
Just another follow up with my Neurologist.
8/13
Was frustrated with the whole losing my hair thing - to be honest, I was tired of taking a lint roller to my pillow every morning to pick up all the hair I was losing. In some spots it was still a little longer so I had Justin just shave it for me. And then he shaved his. And then my brother in law Jon shaved his in support of me. : )
8/17
Spinal tap
Fighting with insurance over covering a much needed chemo drug/pill. They finally gave in after arguing back and forth and it was taken in front of an emergency advisory panel and was covered for the most part.
Chemo W, Th, and F that week. And Tuesday - Friday all the next week.
8/23
Spinal Tap
8/31
Type and Cross
9/1
Blood and Platelets
9/2
My Mom passed away. I kept rescheduling my appt. with Dr. Vukov because I knew it would be very soon for my Mom and he just gave me a week off because of everything going on.
9/13
Spinal Tap
9/15
4th Bone Marrow Biopsy - GREAT results!
9/20
Spinal Tap (12th)
10/11
CT scan scheduled before radiation begins.
10/17
Will begin 12 days of brain radiation. This is part of my treatment plan, nothing is cause for concern. Exact words from my doctor: If there are any cancer cells floating around that haven't formed yet this will kill them off". I'm terrified of it, it's something new that I've never done before and of course, it has risks, but it's something that is part of the treatment plan to keep me in remission. Oh, and add hair loss to this here also - I'm expected to completely lose it again (3rd time) and there is even a chance it could be permanent this time. But something that weighs very heavily on my mind is the chance of me having memory loss in the future. More about that in my next post.
I've been wanting to get this all documented so I'll have it to look back on and I've finally taken the time to go over all of it.
10/1/2010
Cbc - everything looks fine. Assured my symptoms (swollen lymph nodes, trouble breathing and signs of a cold) were not cancer. I had googled swollen lymph nodes and cancer was the first thing to pop up... (Later on my oncologist told us he thinks this came up around Halloween).
12/6
Appt. with Dr. D., my family medical doctor. I push for an x-ray. Still sick, not showing any signs of improvement.
12/7
Call from Dr. D himself, said radiologist called him from Methodist and said I needed to go in for a few days - possible pneumonia. Packed my bag and headed to Methodist. Had to stay the night, did bloodwork, wasn't told much.
12/8
Diagnosed with Acute Lymphocyctic Leukemia (ALL)
Thoracentesis - removed 1 1/2 liters of fluid from my right lung.
Echo cardiogram done
Met with my oncologist, Dr. Vukov, for the first time.
PET scan
12/9
Bone marrow biopsy
Central line placed (which ended up getting infected 3 times in the next month).
12/10
Started chemo
12/11
Haircut in the hospital
12/14
Chemo
12/17
Chemo - Rough day of it
12/
Major hair loss all of December
Numerous scans done
12/24
Was expected to be discharged that day - but as I was in the process of being discharged I had 5 seizures. Immediately moved to ICU. Obviously not discharged (very thankful it happened there and not at home in front of the kids!). Met with Neurologist, Dr. Dong, for the first time.
12/25
Moved back to Oncology floor so I could see the kids on Christmas Day and things were better with me. Seizures were caused from toxicity level of chemo drug (Asparaginase) to my brain.
12/27
Per doctors orders; all chemo was stopped. Liver enzymes had skyrocketed and they were worried about me possibly going into liver failure. Met with liver doctor.
1/4
2nd bone marrow biopsy
1/5
Met with physical therapist (they were worried about me losing strength and muscle from not being able to move around as much).
Also met with a nutritionist, as of then I was down 48 lbs. since 12/7 (I had no appetite at all and was constantly sick from the chemo).
1/7/11
REMISSION!!
Liver biopsy done (thru my jugular vein)
1/8 Discharged
Bloodwork 2 times a week after being discharged. But still no chemo; liver enzymes were still all out of whack.
2/22
Dual Lumen Powerport surgery (small port placed in chest for chemo).
3/1
Started chemo back up
Chemo went as follows:
4 days a week for 2 weeks. Then chemo 1 time a week for 2 weeks. Repeat. Repeat. Repeat.
4/12
Neupogin shot in stomach to increase white count.
Type and Cross at Methodist (always needed before I can get blood transfusions).
4/13
Blood and Platelets at Methodist
5/3
Spinal tap
Type and Cross
5/4
Blood (2 bags)
5/7
Mouth sores (first time having them) All from chemo (Methotrexate).
6/3
Spinal tap
Type and Cross
6/6
Blood and Platelets
6/28
3rd Bone Marrow biopsy
PET scan
Given a week off from chemo for counts to rebound.
7/1
Echo cardiogram done at Methodist
7/12
Spinal tap
7/26
Mouth sores are back
7/30
Was told to expect hair loss, again. Started coming out in clumps today.
8/6
Now down to very little hair.
8/8
Just another follow up with my Neurologist.
8/13
Was frustrated with the whole losing my hair thing - to be honest, I was tired of taking a lint roller to my pillow every morning to pick up all the hair I was losing. In some spots it was still a little longer so I had Justin just shave it for me. And then he shaved his. And then my brother in law Jon shaved his in support of me. : )
8/17
Spinal tap
Fighting with insurance over covering a much needed chemo drug/pill. They finally gave in after arguing back and forth and it was taken in front of an emergency advisory panel and was covered for the most part.
Chemo W, Th, and F that week. And Tuesday - Friday all the next week.
8/23
Spinal Tap
8/31
Type and Cross
9/1
Blood and Platelets
9/2
My Mom passed away. I kept rescheduling my appt. with Dr. Vukov because I knew it would be very soon for my Mom and he just gave me a week off because of everything going on.
9/13
Spinal Tap
9/15
4th Bone Marrow Biopsy - GREAT results!
9/20
Spinal Tap (12th)
10/11
CT scan scheduled before radiation begins.
10/17
Will begin 12 days of brain radiation. This is part of my treatment plan, nothing is cause for concern. Exact words from my doctor: If there are any cancer cells floating around that haven't formed yet this will kill them off". I'm terrified of it, it's something new that I've never done before and of course, it has risks, but it's something that is part of the treatment plan to keep me in remission. Oh, and add hair loss to this here also - I'm expected to completely lose it again (3rd time) and there is even a chance it could be permanent this time. But something that weighs very heavily on my mind is the chance of me having memory loss in the future. More about that in my next post.
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