Ken and I are, yet again, amazed by the generosity and love towards our family. We realize that many of you have already donated to our family, monetarily and in other ways, the outpouring of love and generosity is nothing less than amazing.
We want to thank all who have given so much to us. We wish there were more eloquent words to say thank you but we haven't found any yet. We are forever thankful and pray daily that the Lord's blessings be poured out upon each and everyone of you for your charity.
A few recent events have transpired lately I need to mention as they have touched our family. There are actually two fundraisers going on right now. One was set up for our family to be able to take a trip to Disneyland. This was set up by an old friend from Lethbridge (Riley) and my sister. Riley and his wife are pretty amazing... and so is my sis. When I posted on FB that we wanted to go on a trip as a family, we NEVER a million years expcected you to help our dreams come true!!! The money was raised in less than four days for our entire trip. We were completely shocked when they told us about it this weekend.
The other fundraiser is set up by our friend Kaylee. Her hair is longer than our youngest child. She is beautiful and cutting her hair off to donate. Again, I always hear how "amazing" you think we are, but you have no idea how amazing we think all of you are.
Like I said, I wish we had better words and more means to thank you for all you have done. Like Riley said on his website he realizes that times are tough right now for people, so for you to think of our family and donate, and some of you, donate again on either website, is so appreciated. We love you and are so appreciative of your thoughtfulness.
Sunday, March 17, 2013
Thursday, March 14, 2013
"Geez! That was dramatic!"
Well, today was yet another big day. For me, anyways. Like I said to Dad and Mom, "Another notch on the belt." I was VERY nervous for this procedure, I am not sure why. Maybe all the build up to have the last thing finished up and over with so I can get on with my life again, I'm not sure, but I was having a tough time.
My Gramma watched K for us today and she had a nosebleed. She always gets them, and I forgot to tell "GG" that she gets them, so it was quite the ordeal, not so much for GG, she is a retired nurse so it was handled just fine, I just wish I told her K gets them a lot. Apparently it was a good one, but they all are! K's a trooper.
Dad, Mom and I headed into Vancouver at about 1:15pm. We were there early for my drugs and they were behind so we waited. I finally went in and took my drugs, anit-nausea and one for my stomach because I will be back on the high doses of "the steroid"; this way I won't get an ulcer, which I am very thankful for. If I don't take this medication my stomach literally burns, it's awful.
I was supposed to be in at 4:15pm I think but they were late like I said so I didn't get in until 5:15pm. Before they strapped me down they told me that I could have a break half way through if I needed it but they would have to start all over again. I decided that no matter what I would be tough and just get it over with. WELL, let me tell you that was a mind game for sure!!
I have never in my life (ok, honestly having a baby is worse but this was crappy) felt pressure like that in my head. The radiation tech told me to move around until the pressure is gone. But the whole point is not to move and to stay very still. So you are moving around mm's and it doesn't help. They had a problem with their lasers/markers so they had to come back in and adjust a few things with the physicist. It was cute because the tech said to me, "I'm sorry, I just have to touch your left breast." Being strapped to the table with a mouth guard thing in my face I couldn't say anything smart but I wanted to tell her to feel away!!! There is nothing there! I at least did a chuckle.
They finally got everything working and left the room. They did the first spot and then came in and asked me how I was doing, I did the thumbs up and then started to sweat. I was SO uncomfortable and it was starting to hurt really badly but I just wanted out of there and was trying not to panic. The machine did 5 zaps the first time so I thought I would count out 5 for the second time. After three I was ready to freak out. But instead, I started to sweat some more and play some mental mind games to keep myself calmer... but number 4 and 5 were tough.
They came in quickly and told me they would get me out of there, and also that I did very well. Seriously they couldn't undo that stupid mask fast enough! When the one guy took it off tears were streaming down my cheeks; I didn't even realize that I was crying until the mask came off. Mom was in the room at that time, with my peppermint tea she picked up for me that I swear had a pickle taste to it, and she looked alarmed. It kinda freaked me out, but she was just looking at the wicked indent in my forehead and nose from the mask. I could have won the "beating from the ugly stick contest" for sure!
But it's over with now. I don't know how long we'll have to wait now to see how it all went. I honestly feel pretty good. I don't really feel anything like I did after the full brain radiation. I have had supper... twice, but I only had soup for lunch because I wanted to keep things light and not have a lot in my gut just in case. I do have a headache and probably will tomorrow too, but that's ok. I am very tired and am looking forward to getting to bed, but I just wanted to let you know how it went. Thanks for thinking of me today! It means a lot. Love you and hope your day was a great one!
My Gramma watched K for us today and she had a nosebleed. She always gets them, and I forgot to tell "GG" that she gets them, so it was quite the ordeal, not so much for GG, she is a retired nurse so it was handled just fine, I just wish I told her K gets them a lot. Apparently it was a good one, but they all are! K's a trooper.
Dad, Mom and I headed into Vancouver at about 1:15pm. We were there early for my drugs and they were behind so we waited. I finally went in and took my drugs, anit-nausea and one for my stomach because I will be back on the high doses of "the steroid"; this way I won't get an ulcer, which I am very thankful for. If I don't take this medication my stomach literally burns, it's awful.
I was supposed to be in at 4:15pm I think but they were late like I said so I didn't get in until 5:15pm. Before they strapped me down they told me that I could have a break half way through if I needed it but they would have to start all over again. I decided that no matter what I would be tough and just get it over with. WELL, let me tell you that was a mind game for sure!!
I have never in my life (ok, honestly having a baby is worse but this was crappy) felt pressure like that in my head. The radiation tech told me to move around until the pressure is gone. But the whole point is not to move and to stay very still. So you are moving around mm's and it doesn't help. They had a problem with their lasers/markers so they had to come back in and adjust a few things with the physicist. It was cute because the tech said to me, "I'm sorry, I just have to touch your left breast." Being strapped to the table with a mouth guard thing in my face I couldn't say anything smart but I wanted to tell her to feel away!!! There is nothing there! I at least did a chuckle.
They finally got everything working and left the room. They did the first spot and then came in and asked me how I was doing, I did the thumbs up and then started to sweat. I was SO uncomfortable and it was starting to hurt really badly but I just wanted out of there and was trying not to panic. The machine did 5 zaps the first time so I thought I would count out 5 for the second time. After three I was ready to freak out. But instead, I started to sweat some more and play some mental mind games to keep myself calmer... but number 4 and 5 were tough.
They came in quickly and told me they would get me out of there, and also that I did very well. Seriously they couldn't undo that stupid mask fast enough! When the one guy took it off tears were streaming down my cheeks; I didn't even realize that I was crying until the mask came off. Mom was in the room at that time, with my peppermint tea she picked up for me that I swear had a pickle taste to it, and she looked alarmed. It kinda freaked me out, but she was just looking at the wicked indent in my forehead and nose from the mask. I could have won the "beating from the ugly stick contest" for sure!
But it's over with now. I don't know how long we'll have to wait now to see how it all went. I honestly feel pretty good. I don't really feel anything like I did after the full brain radiation. I have had supper... twice, but I only had soup for lunch because I wanted to keep things light and not have a lot in my gut just in case. I do have a headache and probably will tomorrow too, but that's ok. I am very tired and am looking forward to getting to bed, but I just wanted to let you know how it went. Thanks for thinking of me today! It means a lot. Love you and hope your day was a great one!
Tuesday, March 12, 2013
A whole new kinda strapped in!
Well, I made it through all of my appointments yesterday and they went pretty well. Very, VERY, organized at the cancer center.
One of my best friends (we have been friends since kindergarten) met me there AGAIN, we have to stop meeting like that and actually go somewhere fun for once!! But it was so nice to have her company and talk while waiting for various appointments. She made me laugh and reminded me to be positive without the negative spin off... lol She is totally right. We had some good laughs. Just what I needed, I don't really love being in "sick" places or "cancer" places. Mom and Dad and K (we brought her so we could have some mommy/daughter time and it's been fun. She's been so good. I was thinking the night before, "I wish I could bring one of the kids, but who? C is a busy little fella and I still have to wipe his bum and force him to eat and I get frustrated with him easier and him with me... K! She can feed herself and wipe he own bum!" Then I left the thought until we were getting ready to leave and her and I were crying on the kitchen floor together when Mom suggested we bring her! GREAT idea!) were there too throughout various appointments; it was just nice to not be alone - and also have a full functioning brain on hand at all times!
Dr. N looked at my MRI and said there was nothing new... bloody well better not be! It's only been a week. He said doing this type of treatment pushes your odds up of re-occurrence (the tumors coming back is what I think I am trying to say. When I told Ken he said, "You mean there is a 90% chance they will come back because you did this?" No, that is not what I was trying to say) from 50% to 90%; meaning it is a very effective treatment.
He did some neurological tests with me and I passed with flying colors. But my eyes have been bothering me. Again, when I rest I am ok. But when I am tired they are a horrible mess. Once these two spots on the right side are taken care of I think my eyes will be a lot better... I hope anyways. I know it's still going to take some time.
I found out that I am actually only strapped to the table for an hour. That is ok. But let me tell you the "mask" this time is a whole new kinda mask!!! I have a, not a mouth guard, but and impression was taken of my teeth, I guess it's a bit like a bite plate??? not sure, but I have to wear that and then there is the mesh mask piece that fits the back of my head and then on the front this time there is two pieces, one that is a more solid piece of plastic that runs over my face like a serial killer mask, and then the mesh piece that goes over top of that. Let's just say it's a snug fit, especially across the forehead and nose. If there was a fire and they left you there you would not get out for sure!! Of course I will take some pictures... you need EVERY detail of my life right!! Wink, love ya, your all such good sports!
Again, they talked a lot about me being tired... I hope that is the only side effect I have this time. They will give me nausea meds and I WILL be taking those for sure! Today I felt really awful and had an early nap and tried my best not to barf up my spinach shake... I was successful!!
I seriously just got down to a 1/2 tab of the dex and on Thursday I have to start right back up on 12mgs, but just for two days and then I start to wean off again. Another month of me dex complaining - SORRY!!! And then I should be ok. Well, Dr. N did say that the only problem with me being on them for so long (wish I knew this before but seriously don't think I could have done anything about it) is that I may have burnt my adrenals right out and I might have to be in dex for the rest of my life if I did... or else I will die. First question, "How much?" and "Am I going to look like this forever?" Minimal amount, like 0.05mgs every three days or something, the normal amount that our bodies would naturally produce, and no, I wouldn't look like this because it would be a minimal dose.... well fine then. I still would rather my body make it's own and I don't 100% believe that we can't reverse things in our bodies if we take care of them properly. But, we'll figure that out.
Today was low key. Like I said, I had a nap and then we went to visit my Gramma. It is so nice to be able to see her. She is 90. I want to be 90 one day. K was a typical kid, playing on an electronic device the entire time, I know, that is my fault because I have it! But seriously, they are a life saver, especially in the vehicles!! We are staying at my Uncle and Aunties and it's been nice to visit with them and my cousin came home from school for supper on Sunday night so we got to see him too! It's just nice to be around family, well, anyone that I love to be honest. :)
I am not sure what we are going to do tomorrow, just see how things go and see how I feel. OH, I want to tell you something funny. C, I swear has the movie "Paranorman" memorized. In the evenings, I am usually "done" for the day and I frustrate (is that a word? it is now), get frustrated, whatever, really easily. So I am usually snippy with him because he is the biggest terd! Yes you are but I love you still... W always listens and helps out, K does whatever we ask, and C just pushes buttons and does this horrid fake cry that makes me want to beat him! So I usually snap. And then he says (from the movie in a really snide tone that makes me bust a gut every time thankfully!), "Geez, that was dramatic!" Then we all start to laugh. Just had to share because it has saved his life on numerous occasions and like I said, makes us all laugh because he is such a little smart arse!
I think that's about it for now. I still feel at peace and I am thankful to our Heavenly Father every day for that (when I have time to actually construct some decent lines and good mental thought paths, I have a really neat talk to share with you that one of the Apostles in our church gave at a recent fireside, but I want to do it up right). Just wanted to keep you in the loop. Hope all is well, thanks for your love, support and continued positive comments and encouragement. It means so much to me.
One of my best friends (we have been friends since kindergarten) met me there AGAIN, we have to stop meeting like that and actually go somewhere fun for once!! But it was so nice to have her company and talk while waiting for various appointments. She made me laugh and reminded me to be positive without the negative spin off... lol She is totally right. We had some good laughs. Just what I needed, I don't really love being in "sick" places or "cancer" places. Mom and Dad and K (we brought her so we could have some mommy/daughter time and it's been fun. She's been so good. I was thinking the night before, "I wish I could bring one of the kids, but who? C is a busy little fella and I still have to wipe his bum and force him to eat and I get frustrated with him easier and him with me... K! She can feed herself and wipe he own bum!" Then I left the thought until we were getting ready to leave and her and I were crying on the kitchen floor together when Mom suggested we bring her! GREAT idea!) were there too throughout various appointments; it was just nice to not be alone - and also have a full functioning brain on hand at all times!
Dr. N looked at my MRI and said there was nothing new... bloody well better not be! It's only been a week. He said doing this type of treatment pushes your odds up of re-occurrence (the tumors coming back is what I think I am trying to say. When I told Ken he said, "You mean there is a 90% chance they will come back because you did this?" No, that is not what I was trying to say) from 50% to 90%; meaning it is a very effective treatment.
He did some neurological tests with me and I passed with flying colors. But my eyes have been bothering me. Again, when I rest I am ok. But when I am tired they are a horrible mess. Once these two spots on the right side are taken care of I think my eyes will be a lot better... I hope anyways. I know it's still going to take some time.
I found out that I am actually only strapped to the table for an hour. That is ok. But let me tell you the "mask" this time is a whole new kinda mask!!! I have a, not a mouth guard, but and impression was taken of my teeth, I guess it's a bit like a bite plate??? not sure, but I have to wear that and then there is the mesh mask piece that fits the back of my head and then on the front this time there is two pieces, one that is a more solid piece of plastic that runs over my face like a serial killer mask, and then the mesh piece that goes over top of that. Let's just say it's a snug fit, especially across the forehead and nose. If there was a fire and they left you there you would not get out for sure!! Of course I will take some pictures... you need EVERY detail of my life right!! Wink, love ya, your all such good sports!
Again, they talked a lot about me being tired... I hope that is the only side effect I have this time. They will give me nausea meds and I WILL be taking those for sure! Today I felt really awful and had an early nap and tried my best not to barf up my spinach shake... I was successful!!
I seriously just got down to a 1/2 tab of the dex and on Thursday I have to start right back up on 12mgs, but just for two days and then I start to wean off again. Another month of me dex complaining - SORRY!!! And then I should be ok. Well, Dr. N did say that the only problem with me being on them for so long (wish I knew this before but seriously don't think I could have done anything about it) is that I may have burnt my adrenals right out and I might have to be in dex for the rest of my life if I did... or else I will die. First question, "How much?" and "Am I going to look like this forever?" Minimal amount, like 0.05mgs every three days or something, the normal amount that our bodies would naturally produce, and no, I wouldn't look like this because it would be a minimal dose.... well fine then. I still would rather my body make it's own and I don't 100% believe that we can't reverse things in our bodies if we take care of them properly. But, we'll figure that out.
Today was low key. Like I said, I had a nap and then we went to visit my Gramma. It is so nice to be able to see her. She is 90. I want to be 90 one day. K was a typical kid, playing on an electronic device the entire time, I know, that is my fault because I have it! But seriously, they are a life saver, especially in the vehicles!! We are staying at my Uncle and Aunties and it's been nice to visit with them and my cousin came home from school for supper on Sunday night so we got to see him too! It's just nice to be around family, well, anyone that I love to be honest. :)
I am not sure what we are going to do tomorrow, just see how things go and see how I feel. OH, I want to tell you something funny. C, I swear has the movie "Paranorman" memorized. In the evenings, I am usually "done" for the day and I frustrate (is that a word? it is now), get frustrated, whatever, really easily. So I am usually snippy with him because he is the biggest terd! Yes you are but I love you still... W always listens and helps out, K does whatever we ask, and C just pushes buttons and does this horrid fake cry that makes me want to beat him! So I usually snap. And then he says (from the movie in a really snide tone that makes me bust a gut every time thankfully!), "Geez, that was dramatic!" Then we all start to laugh. Just had to share because it has saved his life on numerous occasions and like I said, makes us all laugh because he is such a little smart arse!
I think that's about it for now. I still feel at peace and I am thankful to our Heavenly Father every day for that (when I have time to actually construct some decent lines and good mental thought paths, I have a really neat talk to share with you that one of the Apostles in our church gave at a recent fireside, but I want to do it up right). Just wanted to keep you in the loop. Hope all is well, thanks for your love, support and continued positive comments and encouragement. It means so much to me.
Thursday, March 7, 2013
What's coming up!!
Well, we got the "call" today about our appointments... and there are a lot, in Vancouver. Literally on Monday I will be in appointments ALL day. I start at 9:30am for a blood test, then 10:30am another MRI, 12:00pm another mask fitting (yay arts and crafts! ya right, I am sure I will hate masks after I have to wear this one for two to three hours straight!), 1:30pm IV contrast, 2:00pm meet with the Dr, 3:00pm CT scan... that is one busy day. Then I have the actual radiation on Thursday. I have to be there are 3:00pm to see the nurse to get my meds and then treatment starts at 4:15pm. Like I said, it is 2-3 hours that I am literally strapped to a table for this duration of time...
Here are some of my pics of me in all my glory strapped in for radiation last time. What am I going to do to pass the time, it's not like the bed is comfy!!!
Here are some of my pics of me in all my glory strapped in for radiation last time. What am I going to do to pass the time, it's not like the bed is comfy!!!
 |
| Smile, why not... |
 |
| See, they put the mask on, white edge rim... |
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| And then literally clamp you down so you can't even open your eyes with the nice black plastic piece. You aren't going anywhere when that thing is on!! |
I lay on a piece of hard plastic and I am so thankful that I am almost three months post surgery, well, I will be getting this radiation on my three month anniversary, how lovely, because I would not be able to bear the pain of laying on my head for that long. I still have a hard time at night with my pillow. Enough whining already... I will be just fine... bored, but fine. I will be dreaming of summer and having my face back. That's all I want.
Wednesday, March 6, 2013
A little ray of light...
Well today we heard back from Dr. M again. I just love him. Have I told you that before!! He calls, doesn't introduce himself and says, "What, it's been a week since I've talked to you?" LOVE IT!!! He's great. Anyways, he presented my case today to his colleges and got into the explaining of things.
Apparently one of the tumors in my cerebellum was lobular in shape, like a dumbbell so part of it was taken out and the rest was missed? I am a little confused but that is why the third spot has shown up. It was always there. To me, that's good, it's nothing new.
He also explained that it was just over a month from my first MRI to my last which was on Friday so he is not concerned with the tumor growth. He said that the tumors very well could have grown in size in that time so they have probably shrunk from the radiation. Bottom line, I am still a good candidate for the stereotactic radiation. All three spots can be done and that makes me happy.
Now we just wait to hear form Vancouver as to when it's go time. We are getting there!! And I am feeling good about life again. Just thought I would keep you in the loop.
Apparently one of the tumors in my cerebellum was lobular in shape, like a dumbbell so part of it was taken out and the rest was missed? I am a little confused but that is why the third spot has shown up. It was always there. To me, that's good, it's nothing new.
He also explained that it was just over a month from my first MRI to my last which was on Friday so he is not concerned with the tumor growth. He said that the tumors very well could have grown in size in that time so they have probably shrunk from the radiation. Bottom line, I am still a good candidate for the stereotactic radiation. All three spots can be done and that makes me happy.
Now we just wait to hear form Vancouver as to when it's go time. We are getting there!! And I am feeling good about life again. Just thought I would keep you in the loop.
Monday, March 4, 2013
MRI Results
Well, like most things, it seems we weren't lucky enough to be able to have called the light brain radiation to have been enough to take care of things. In fact, both the spots have grown, one doubled, and there is another spot in the cerebellum that is still small enough to be taken care of by the stereotactic. So it looks like we will be heading out to Vancouver at some point soon to have that done. Dr. M is putting me on the urgent list (freaks me out a little but I want to work with these buggers while we still can) to get me there quickly. They can only do this type of thing up to a certain size so I am anxious to get it done.
We talked to the Dr here today about starting chemo again, but Dr. M wants me to wait to start on the chemo... Dr here also said that the tumor markers could be up because of die off from the surgery, and also quite often my markers might continue to go up while I first start chemo again because of cell die off. Whatever, I don't know what to think anymore.
Ken and I had another really good talk yesterday... teary and realistic, but good. I said I am just tired of cancer. Not fighting, I will never stop fighting. But I just want to get a job, make some money so I can spend some money (LOL), have fun, not talk about cancer or think about it every single day. I want to laugh with my family, watch a million movies and snuggle up with them. I want to feel normal and happy and do things that you all do. I can't wait to do my hair again and feel like me. I just want to focus elsewhere. Cancer is exhausting. Physically and mentally. And thinking about it all the time doesn't do anyone any good.
Plus it seems my heart breaks every day for another person who's battle just got harder, or a new person with a diagnosis, or someone who lost their battle. It is very hard not to compare my life to theirs and wonder if that is what is next for me. The good ole', "don't look at the train wreck" thing. I pray for these people and their families. I hate what they have to go through because I have to do it too and I know how they feel and I wish there were some way to take it away.
I am thankful for the peace that I do find within the arms of the Savior. I can honestly say I would be living in hell if it weren't for Him... and family, and all of your prayers and positive thoughts. Well, I am going to run, fold laundry like a normal mom, I guess that's kinda fun... and watch a movie. God bless you all and thank you for your continued support.
We talked to the Dr here today about starting chemo again, but Dr. M wants me to wait to start on the chemo... Dr here also said that the tumor markers could be up because of die off from the surgery, and also quite often my markers might continue to go up while I first start chemo again because of cell die off. Whatever, I don't know what to think anymore.
Ken and I had another really good talk yesterday... teary and realistic, but good. I said I am just tired of cancer. Not fighting, I will never stop fighting. But I just want to get a job, make some money so I can spend some money (LOL), have fun, not talk about cancer or think about it every single day. I want to laugh with my family, watch a million movies and snuggle up with them. I want to feel normal and happy and do things that you all do. I can't wait to do my hair again and feel like me. I just want to focus elsewhere. Cancer is exhausting. Physically and mentally. And thinking about it all the time doesn't do anyone any good.
Plus it seems my heart breaks every day for another person who's battle just got harder, or a new person with a diagnosis, or someone who lost their battle. It is very hard not to compare my life to theirs and wonder if that is what is next for me. The good ole', "don't look at the train wreck" thing. I pray for these people and their families. I hate what they have to go through because I have to do it too and I know how they feel and I wish there were some way to take it away.
I am thankful for the peace that I do find within the arms of the Savior. I can honestly say I would be living in hell if it weren't for Him... and family, and all of your prayers and positive thoughts. Well, I am going to run, fold laundry like a normal mom, I guess that's kinda fun... and watch a movie. God bless you all and thank you for your continued support.
Saturday, March 2, 2013
Mountains to Climb
We all have them. What's yours? After I got my tumor marker results I was very saddened. I then decided to read my gf's blog and she had this video posted. I wanted to share it with you because I believe it with all my heart and it gave me great peace. I hope you enjoy it and I pray amidst your trials you can find "your twig of faith" and know that you are NEVER alone.
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