Good Morning ...
So doctor update from yesterday.....hmmmmmm
Well, really not much has changed, I believe we were looking for a little more change but, there wasn't the doctor said I sounded better so that is great! as long as I sound better that's the good thing!!!. I just don't feel better and again these stupid lymph nodes are what is doing it to me. They have grown so much and are pushing in all he wrong spots. I believe my Dr. wanted to see or hear better things. He said it was only one week so we will see you again next Friday and hopefully there will be improvement. What if my miracle drug isn't a miracle for me. I have a lot of hope and prayers based on it. What if I am the one it does n't work on. What if I screw up all the governments great data will they regret letting me take this drug?
I have been trying to wean off the steroids to sleep, but doctor wants me to start taking them fully again to see if I can get relief around my throat through them again. So that crushes the sleep thing again.. One side effect I am having is extreme swelling of my legs with fluid. Not good for my BP or my heart so another drug for that one. Yesterday was the first day I was in pain most of it 2 morphine every 2 hours and that did not make me happy. I stayed in bed most of the night hoping if I just lay there I will sleep. I slept off and on for maybe 3 hours so at least I got that amount...his all the update for now....
This next week is going to be the biggy in decision making and time lines for me... no pressure.....I'm feeling numb and shell shocked and angry and frustrated an tired....I wish \I could change those all to fun care free words but not today. Maybe later.
It is the Santa Claus Parade today Starting Santa Brad Woody Stone, My baby sister is coming for a visit Kyla Werrett, and I should see bunch of grand kids today also...John and Donna Margaret Duncan, will be coming for a visit and I think I need to see my friends Barry and Marsha Lynn Peterson-Reilly so expect a phone call.... Also a shout out to my anonymous drive and buyer of lunch for me yesterday....Thank you who ever you were....and damn you looked good....lol
So please pray for the miracle drug to kick in and maybe the side effects to kick out. I made the comment well if I have side effects that means the drug must be working and he said no, we don't want to see side effects and that doesn't necessarily mean it is working. So slap me silly...........
I could use sleep but at this point why now....lol I would like to have a good weekend with my family and friends and that's what is important to me.... right now in this moment to be happy and filled with joy and laughter ... BTwWi need more shenanigans so please offer, Ill go I'll participate....
Thomasine Dingee Vandertogt-Hoyle, you must have one of you girls from the Bitch group come up with an idea for us????
Anyways everyone enjoy your Saturday the best you can, live in the moment, sing your song and shake your booties......
I love you all so much..
Thanks again for continued prayers....and your love and faith and hope and strength, trust me these are the times I am leaning on you guys...The time when I am numb and tired and with no strength, trust me I am leaning on your big time....
Saturday, 30 November 2013
Friday, 29 November 2013
Good Morning Team Awesome...
I am back to no sleep again. 28 hours no sleep...I am trying to figure out all this drug stuff and it is so hard. My body changes the rules everyday and it wears on me so much. Everyday my tumours are getting larger in my throat and neck and moving and shifting, so from day to day, I don't know if will be able to eat, or breathe or what ever...It even changes through out the day. Yesterday absolutely nothing going down but boost, mashed potatoes and baby food, then supper I ate some Chinese food for supper without a problem..I don't know from minute to minute if I am going to throw up or not, it just happens sometimes no warnings... It's then that I see I am sick. I hate it!!!
I try so hard to be positive but I hate it!!!!
I don't want to post doom and gloom, I want to post happy antics and silly stories and I want to giggle and be happy, but I guess I must balance the two the best I can.
My sister and nephew left the other day and that left a huge hole in my heart and home. My cousin left and I sent my mom with her as a surprise to my Aunt Leta. It was my aunts 75th birthday yesterday, and me and my mom where going to surprise her before all this cancer stuff. I wanted to send my mom so she could have a bit of a break and be with her sister.
I phone and asked my hubby to come home for the night and he did. I just needed him to be here for a few hours with me. So after his long shift being Santa he got home at 11 at night and we just snuggles until three when i asked hmm to get up and make me some food, my schedule is so screwed up so i eat when I can and he did it with a happy heart, even if I could eat. It seems like since my hubby left everything in the house keeps breaking down which makes it hard on him again. He just wants to be here with me looking after me, he wants to quit the Santa thing but I really think he needs to stay there, only 3 weeks and a few days left...The vacuum, the dryer, the Christmas lights, the touch tap where are the batteries where is this key to the shed where is this where is that? It sis crazy how much Ii have be come dependent on all the little things, get the garbage out, the brakes don't seems to be right on the Jeep etc... anyway my poor hubby got the jeep in to the garage got my brakes fixed apparently there was a hole in my break line and I essentially have had no brakes for the last 2 trips to Oshawa and to Peterborough on Monday.. So I will say thank you God you kept us safe and sound, so maybe you wanna keep me around a little longer. The brake line was rusted with a large hole right through it...go figure...
It's been a little crazy here the last week which again was nice and distracting, I guess maybe that is part of the whole thing. The distraction is good, maybe I don't have to look at me if I can stay busy and crazy with everyone else...Which isn't good because I like to look after everybody. I put me to the back and fall into my roll so well. the care giver the cook, the one in control the one who looks after everybody... I have to stop but it is so hard to. I am trying to reach out and say my needs but boy it's hard. I am so lucky my wonderful son Jon Barneshas agreed to stay with me till Christmas when Brad Woody Stone, will finally be home Christmas eve. Its been so hard on mu hubby but again money life bills continue even though you don't want them to. All the travel the gas the parking 10.00 a day a run through Timmy's it just keeps adding up. The travel is so tiring it really drains on me..but what are the options? I have another appointment in Oshawa this morning to see my oncologist. Janet Lammers, my good friend will be driving me again. I will be seeing him to see if he thinks the miracle drug is working or not. Today I say no, but I will let him be the judge of that. I am having some side effects so something is working just maybe I need a few more. I'm not having any of the gastrointestinal stuff which is great, but my lips finger tips and toes are numb and then they are very hot like fire is coming out of them. My legs are full of the fluid a swelling which isn't good for my heart. Everything plays a part. One step forward two back.... two steps forward one back, and again and again......and again, forward backward forward backward, I wonder why I'm dizzy.....Oh Lord please make this medicine work in my body.. please give me some release from this choking and swelling in my throat and neck....
I had a nice visit yesterday with Paula Card and My old (young) Dr Vince Cheng. he was my doctor years ago and I miss him so much. They came to visit and I held on to him and I cried and it felt so good... just to know that someone cares and he would never have let this happen to me. I know it. it is such a nice feeling to trust your doctor and I haven't been able to do that in years.....Thank you to for coming and visiting, it meant a great deal to me... more than you will know...
So today I see Dr Rothenstien and see what he has to say about the miracle drug and whats whats... for today anyways.....
I am back to no sleep again. 28 hours no sleep...I am trying to figure out all this drug stuff and it is so hard. My body changes the rules everyday and it wears on me so much. Everyday my tumours are getting larger in my throat and neck and moving and shifting, so from day to day, I don't know if will be able to eat, or breathe or what ever...It even changes through out the day. Yesterday absolutely nothing going down but boost, mashed potatoes and baby food, then supper I ate some Chinese food for supper without a problem..I don't know from minute to minute if I am going to throw up or not, it just happens sometimes no warnings... It's then that I see I am sick. I hate it!!!
I try so hard to be positive but I hate it!!!!
I don't want to post doom and gloom, I want to post happy antics and silly stories and I want to giggle and be happy, but I guess I must balance the two the best I can.
My sister and nephew left the other day and that left a huge hole in my heart and home. My cousin left and I sent my mom with her as a surprise to my Aunt Leta. It was my aunts 75th birthday yesterday, and me and my mom where going to surprise her before all this cancer stuff. I wanted to send my mom so she could have a bit of a break and be with her sister.
I phone and asked my hubby to come home for the night and he did. I just needed him to be here for a few hours with me. So after his long shift being Santa he got home at 11 at night and we just snuggles until three when i asked hmm to get up and make me some food, my schedule is so screwed up so i eat when I can and he did it with a happy heart, even if I could eat. It seems like since my hubby left everything in the house keeps breaking down which makes it hard on him again. He just wants to be here with me looking after me, he wants to quit the Santa thing but I really think he needs to stay there, only 3 weeks and a few days left...The vacuum, the dryer, the Christmas lights, the touch tap where are the batteries where is this key to the shed where is this where is that? It sis crazy how much Ii have be come dependent on all the little things, get the garbage out, the brakes don't seems to be right on the Jeep etc... anyway my poor hubby got the jeep in to the garage got my brakes fixed apparently there was a hole in my break line and I essentially have had no brakes for the last 2 trips to Oshawa and to Peterborough on Monday.. So I will say thank you God you kept us safe and sound, so maybe you wanna keep me around a little longer. The brake line was rusted with a large hole right through it...go figure...
It's been a little crazy here the last week which again was nice and distracting, I guess maybe that is part of the whole thing. The distraction is good, maybe I don't have to look at me if I can stay busy and crazy with everyone else...Which isn't good because I like to look after everybody. I put me to the back and fall into my roll so well. the care giver the cook, the one in control the one who looks after everybody... I have to stop but it is so hard to. I am trying to reach out and say my needs but boy it's hard. I am so lucky my wonderful son Jon Barneshas agreed to stay with me till Christmas when Brad Woody Stone, will finally be home Christmas eve. Its been so hard on mu hubby but again money life bills continue even though you don't want them to. All the travel the gas the parking 10.00 a day a run through Timmy's it just keeps adding up. The travel is so tiring it really drains on me..but what are the options? I have another appointment in Oshawa this morning to see my oncologist. Janet Lammers, my good friend will be driving me again. I will be seeing him to see if he thinks the miracle drug is working or not. Today I say no, but I will let him be the judge of that. I am having some side effects so something is working just maybe I need a few more. I'm not having any of the gastrointestinal stuff which is great, but my lips finger tips and toes are numb and then they are very hot like fire is coming out of them. My legs are full of the fluid a swelling which isn't good for my heart. Everything plays a part. One step forward two back.... two steps forward one back, and again and again......and again, forward backward forward backward, I wonder why I'm dizzy.....Oh Lord please make this medicine work in my body.. please give me some release from this choking and swelling in my throat and neck....
I had a nice visit yesterday with Paula Card and My old (young) Dr Vince Cheng. he was my doctor years ago and I miss him so much. They came to visit and I held on to him and I cried and it felt so good... just to know that someone cares and he would never have let this happen to me. I know it. it is such a nice feeling to trust your doctor and I haven't been able to do that in years.....Thank you to for coming and visiting, it meant a great deal to me... more than you will know...
So today I see Dr Rothenstien and see what he has to say about the miracle drug and whats whats... for today anyways.....
Wednesday, 27 November 2013
Tuesday, 26 November 2013
Sunday, 24 November 2013
Good Morning!!!
Well, another great day for me.......I just can't believe how happy and how many memories can be made in such a short time. Yesterday was full love, over the top brim brewing memories and i am just blown away with the fun laughter generosity and love that my home life and heart is being filled with....I just want to screammmmmmmmmmmm...........I'm so happy.....I dont think there is any more room for more happiness my heart is already larger so I`m not sure whats going on...I am on a freaking happiness high.. may be the stress thing coming down with the pills or just pure sweet happiness with my life right now ( ironic I think so).
Today my friend came down ( Robert, Sue Stewart`s husband who has been a real blessing to us through his beautiful work..) He worked his butt off and did 10 tattoos yesterday. i will put up a file and show you all his beautiful work those who haven`t seen.. Some are tattoos that my family wanted and some just tattoos but his work is beautiful and so is his spirit and heart...I am blessed for him walking into my life and cant hardly wait to meet his wonderful wife, very soon.
I want to thank Wendy Martin, who came and gave me a massage it was a real treat, and again my wonderful friend Nancy Delcellier, who again this weekend drove from Ottawa to visit me, in this crazy confusing house of ours right now and thank you that you brought my baby boy Josh Morgan home again for a visit and laundry...lol.
I want you people to know that I only met Nancy in January in Cuba at a resort we were staying at and fell madly in love with both her and her hubby immediately. Again I am so blessed to have this couple in our life and how this was made so possible in a impossible world of ours. Our lives would never have crossed paths if this wasn't meant to be..She has been driving almost every weekend form Ottawa to visit and trust me this is one busy lady, she works for Carlton university and sorry Nancy not able to say your job title but she ( I believe) is in charge of the health and safety department for the university looking after that that entails. So she is on call like 24/7 and has still managed to give me some priority in her life.. wow you are an amazing lady Nancy..I am so blessed.....Yes, my wonderful nephew James Bishop came in also from Niagara. He works at a winery there all summer then goes to Baniff and works there for the winter. I love his free easy, going spirit, but most of all I love him and all the life he has in him... as a kid he was a scrawny little blond thing and I loved to feed him and he love to eat. It was a match made in heaven...He would come visit and I just loved him so much. We again have connected in the last few years he has come to visit usually around Family day so we do the family day bowling and our annual homemade pizza night for the last couple years and I am so glad he is a part of my family. Suzette Earhart you did good work making this boy...lol
So again after many people in and out of the house yesterday and Robert working so hard we finished at 11 o'clock last night and decided to go get a munchies and a drink at the local watering hole with most of my children and sister and wonderful nephew James Bishop went out. ( We tried to get Shari Jarvis up but couldn't she didn't think we were serious she missed some great shenanigans ). We had some drinks, and food and danced up a storm, ( I couldn't cause of my breathing) but I tried chair dancing and I did have one dance with both sons for a few minutes but I sure couldn't breath and I had a weepy moment. I love to dance and to dance with my sons, it was sad. But I enjoyed every second in their arms and I held on for dear life and breathed in the moment, and nothing will take that away from me. I spent time with my daughter Alisha Morgan and all my family and it was a amazing, amazing night. Pictures to follow...
I have tried to start writing a book several times and it just hasn't and know i feel it is going to.. I will posting a few more things is my blog in the next few days... Ii think this is my starting spot..
love you all.. talk later.....
Well, another great day for me.......I just can't believe how happy and how many memories can be made in such a short time. Yesterday was full love, over the top brim brewing memories and i am just blown away with the fun laughter generosity and love that my home life and heart is being filled with....I just want to screammmmmmmmmmmm...........I'm so happy.....I dont think there is any more room for more happiness my heart is already larger so I`m not sure whats going on...I am on a freaking happiness high.. may be the stress thing coming down with the pills or just pure sweet happiness with my life right now ( ironic I think so).
Today my friend came down ( Robert, Sue Stewart`s husband who has been a real blessing to us through his beautiful work..) He worked his butt off and did 10 tattoos yesterday. i will put up a file and show you all his beautiful work those who haven`t seen.. Some are tattoos that my family wanted and some just tattoos but his work is beautiful and so is his spirit and heart...I am blessed for him walking into my life and cant hardly wait to meet his wonderful wife, very soon.
I want to thank Wendy Martin, who came and gave me a massage it was a real treat, and again my wonderful friend Nancy Delcellier, who again this weekend drove from Ottawa to visit me, in this crazy confusing house of ours right now and thank you that you brought my baby boy Josh Morgan home again for a visit and laundry...lol.
I want you people to know that I only met Nancy in January in Cuba at a resort we were staying at and fell madly in love with both her and her hubby immediately. Again I am so blessed to have this couple in our life and how this was made so possible in a impossible world of ours. Our lives would never have crossed paths if this wasn't meant to be..She has been driving almost every weekend form Ottawa to visit and trust me this is one busy lady, she works for Carlton university and sorry Nancy not able to say your job title but she ( I believe) is in charge of the health and safety department for the university looking after that that entails. So she is on call like 24/7 and has still managed to give me some priority in her life.. wow you are an amazing lady Nancy..I am so blessed.....Yes, my wonderful nephew James Bishop came in also from Niagara. He works at a winery there all summer then goes to Baniff and works there for the winter. I love his free easy, going spirit, but most of all I love him and all the life he has in him... as a kid he was a scrawny little blond thing and I loved to feed him and he love to eat. It was a match made in heaven...He would come visit and I just loved him so much. We again have connected in the last few years he has come to visit usually around Family day so we do the family day bowling and our annual homemade pizza night for the last couple years and I am so glad he is a part of my family. Suzette Earhart you did good work making this boy...lol
So again after many people in and out of the house yesterday and Robert working so hard we finished at 11 o'clock last night and decided to go get a munchies and a drink at the local watering hole with most of my children and sister and wonderful nephew James Bishop went out. ( We tried to get Shari Jarvis up but couldn't she didn't think we were serious she missed some great shenanigans ). We had some drinks, and food and danced up a storm, ( I couldn't cause of my breathing) but I tried chair dancing and I did have one dance with both sons for a few minutes but I sure couldn't breath and I had a weepy moment. I love to dance and to dance with my sons, it was sad. But I enjoyed every second in their arms and I held on for dear life and breathed in the moment, and nothing will take that away from me. I spent time with my daughter Alisha Morgan and all my family and it was a amazing, amazing night. Pictures to follow...
I have tried to start writing a book several times and it just hasn't and know i feel it is going to.. I will posting a few more things is my blog in the next few days... Ii think this is my starting spot..
love you all.. talk later.....
Saturday, 23 November 2013
Good Morning Peoplessssss.....
I HAVE DECIDED TO LIVE.... END OF BLOG!!!!!
Just kidding well no I am going to live and beat this thing but I can't stop the journey and we are here for the long haul......
So for some people I am going to cut a paste a bit from yesterday as I do post this on blogspot and people are following it and not on my Facebook so they didn't get to see all the little bits of good news yesterday....
so quick update for those who didn't know:
1.I just found out something me and big sister have in common. Driving the 401 has brought out her Tourette's. lol. I needed a laugh. The sky is grey but the language is colourful. Pretty pretty coloured rainbows of potty mouth. — feeling amused.
2.First of many, this was a picture of me taking my new drug. Thank you. The doctor said to me. No pun but I just gave you your hope back. How did he know I prayed for that this morning. (God knew). Also I was in the waiting room crying ( happy tears) and this wonderful man in a turban in the waiting room and he looked at me and said all you need is faith and God will do the rest don't listen to the doctors he has a plan for you. There are angels everywhere and God knew I needed them today. What an awesome God we serve.
3. So went not knowing what I was in for. I didn't know if I was having Chemo or the miracle pill or what? I go there did blood work met with the nurse. My breathing is not good so they are putting me on oxygen starting today. Then Dr called me in and said we have the drugs here we want you to go get them and take a pill while your here so we make sure you tolerate it. Had an ECG to get a base line and they need to watch my liver function, but essentially here is your 9000.00 pills take two a day and I'll see you next week. So next Friday my doctor hopes to see great improvements in me. Me too.....He will give me a better time line after he see's what happens to me this week...He is sure I will notice a huge difference in my pain levels and my breathing... I am on an anti nausea drug that makes me drowsy so that's ok, I can start getting off the steroids and hopefully start to sleep. The one side effect form this pill which is a little crazy but if it is the only one then what the hey. In the low light hours dusk and dawn I will have trouble with my eyes, I will see slights and things will trail solid object will move etc, but only for about 1/2 during low light so I shouldn't drive. So that's weird but i can live with that. again hopefully as my body gets use to the drug there should be no nausea or eye thingy s, there are a couple other little things but nothing to worry about as they are so rare..
I go get another echo on my heart on Monday and see how it is progressing probably still the biggest worry at this time but again Dr said this pill should get things working including the fluid to naturally drain form my heart...I hope so...
so, busy weekend but very hopeful of this wonder drug....
Love you all..
3 pills in......I guess I just went up in value.....lol
I HAVE DECIDED TO LIVE.... END OF BLOG!!!!!
Just kidding well no I am going to live and beat this thing but I can't stop the journey and we are here for the long haul......
So for some people I am going to cut a paste a bit from yesterday as I do post this on blogspot and people are following it and not on my Facebook so they didn't get to see all the little bits of good news yesterday....
so quick update for those who didn't know:
1.I just found out something me and big sister have in common. Driving the 401 has brought out her Tourette's. lol. I needed a laugh. The sky is grey but the language is colourful. Pretty pretty coloured rainbows of potty mouth. — feeling amused.
2.First of many, this was a picture of me taking my new drug. Thank you. The doctor said to me. No pun but I just gave you your hope back. How did he know I prayed for that this morning. (God knew). Also I was in the waiting room crying ( happy tears) and this wonderful man in a turban in the waiting room and he looked at me and said all you need is faith and God will do the rest don't listen to the doctors he has a plan for you. There are angels everywhere and God knew I needed them today. What an awesome God we serve.
3. So went not knowing what I was in for. I didn't know if I was having Chemo or the miracle pill or what? I go there did blood work met with the nurse. My breathing is not good so they are putting me on oxygen starting today. Then Dr called me in and said we have the drugs here we want you to go get them and take a pill while your here so we make sure you tolerate it. Had an ECG to get a base line and they need to watch my liver function, but essentially here is your 9000.00 pills take two a day and I'll see you next week. So next Friday my doctor hopes to see great improvements in me. Me too.....He will give me a better time line after he see's what happens to me this week...He is sure I will notice a huge difference in my pain levels and my breathing... I am on an anti nausea drug that makes me drowsy so that's ok, I can start getting off the steroids and hopefully start to sleep. The one side effect form this pill which is a little crazy but if it is the only one then what the hey. In the low light hours dusk and dawn I will have trouble with my eyes, I will see slights and things will trail solid object will move etc, but only for about 1/2 during low light so I shouldn't drive. So that's weird but i can live with that. again hopefully as my body gets use to the drug there should be no nausea or eye thingy s, there are a couple other little things but nothing to worry about as they are so rare..
I go get another echo on my heart on Monday and see how it is progressing probably still the biggest worry at this time but again Dr said this pill should get things working including the fluid to naturally drain form my heart...I hope so...
so, busy weekend but very hopeful of this wonder drug....
Love you all..
3 pills in......I guess I just went up in value.....lol
Friday, 22 November 2013
Good Morning people
Its short and sweet this morning.
Off to an early start for Oshawa 6:30 this morning with appointments till 1:30 this afternoon. It will be a long day. I know nothing that is going on!
I am not feeling well, I have more pain, I'm so tired and my spirits are so low. I try so hard to keep up, but I'm crying more and the tears and frustration come so easy. I think my mental state without sleep is betraying me... I think for the first time I really feel like I am sick and I am scared. All the travelling is very tiring for me also...I feel like I am still looking after everyone, trying to make sure that they are OK and I am starting to resent it... Yea, it's my own fault as I am the one that feels I have to make sure everyone else is OK. I don't know how to stop, I have always done this naturally I would say ( I am a mom think it comes with the job). I have very little patience right now. It seems like my sensory perception and ability to handle thing has be come very small, noises and commotion etc. is hard for me to take in. Yet I want my kids, and family around and with six kids, grand kids, spouses, moms, brothers etc. the noise and commotion goes up and I want to drink every happy giggle, laugh, squeal and I don't want to miss anything and yet I find myself wanting to be quiet and alone. How do I balance all of this? I'm struggling as I have no idea what to expect from this day and I hate having no control or info... This control thing is really becoming an issue for me.... I need something.. I find people are hiding things from me and that makes me mad. I know they are trying to protect me but I have a heart and I care and I want to know. I can pray for someone else. This isn't all about me.......This is about me going through something with the love and help of you wonderful people. But I need to give back I need to love and care and cry for others, that's the way I was created. So when you take that away from me you are taking a big piece of what God created me away from me and denying what I need . Please help keep me balanced. I know I'm telling you I'm tired and struggling but let me make the decision if I can handle it or not. If not I might have to say so, and let me.... so much for short and sweet this morning....
I will say my Zazzy cat is everything I needed she sleeps on me purrs for me, gets up in the night with me and keeps me company. Then goes back to bed with me. I think God created her just for me....Thank you God boy did I need her... I'm not so alone and she gives me great joy and I love this little ball of fluffy more than you could possible know.
So, off I go into the unknown, I will find out if my cancer is growing faster than they expected. I will hopefully receive my miracle drug treatment today and no chemo I guess unless I have to have it... and hopefully will get my hope back.. I love you all so much please hold me in your hearts today ( and everyday but I really need you guys today)
Its short and sweet this morning.
Off to an early start for Oshawa 6:30 this morning with appointments till 1:30 this afternoon. It will be a long day. I know nothing that is going on!
I am not feeling well, I have more pain, I'm so tired and my spirits are so low. I try so hard to keep up, but I'm crying more and the tears and frustration come so easy. I think my mental state without sleep is betraying me... I think for the first time I really feel like I am sick and I am scared. All the travelling is very tiring for me also...I feel like I am still looking after everyone, trying to make sure that they are OK and I am starting to resent it... Yea, it's my own fault as I am the one that feels I have to make sure everyone else is OK. I don't know how to stop, I have always done this naturally I would say ( I am a mom think it comes with the job). I have very little patience right now. It seems like my sensory perception and ability to handle thing has be come very small, noises and commotion etc. is hard for me to take in. Yet I want my kids, and family around and with six kids, grand kids, spouses, moms, brothers etc. the noise and commotion goes up and I want to drink every happy giggle, laugh, squeal and I don't want to miss anything and yet I find myself wanting to be quiet and alone. How do I balance all of this? I'm struggling as I have no idea what to expect from this day and I hate having no control or info... This control thing is really becoming an issue for me.... I need something.. I find people are hiding things from me and that makes me mad. I know they are trying to protect me but I have a heart and I care and I want to know. I can pray for someone else. This isn't all about me.......This is about me going through something with the love and help of you wonderful people. But I need to give back I need to love and care and cry for others, that's the way I was created. So when you take that away from me you are taking a big piece of what God created me away from me and denying what I need . Please help keep me balanced. I know I'm telling you I'm tired and struggling but let me make the decision if I can handle it or not. If not I might have to say so, and let me.... so much for short and sweet this morning....
I will say my Zazzy cat is everything I needed she sleeps on me purrs for me, gets up in the night with me and keeps me company. Then goes back to bed with me. I think God created her just for me....Thank you God boy did I need her... I'm not so alone and she gives me great joy and I love this little ball of fluffy more than you could possible know.
So, off I go into the unknown, I will find out if my cancer is growing faster than they expected. I will hopefully receive my miracle drug treatment today and no chemo I guess unless I have to have it... and hopefully will get my hope back.. I love you all so much please hold me in your hearts today ( and everyday but I really need you guys today)
Thursday, 21 November 2013
Good Morning,
Well, big news I got a baby kitty and her name is Zazzy Cat! I have been looking for one since august and finally found one, actually my oldest son Jon gave her to me.. anyone who knows me, knows if not properly controlled ( only in this department of my life) could end up being the crazy cat woman with ninety nine cats and I would know all their names. I LOVE Cats.....This kitty is a blessing to me. I struggled with getting one because I didn't want to have one and then leave her....but even if I do she will continued to be loved by my family. It is actually very selfish of me to do this but I wanted not to be alone in the night I wanted to feel the warm little furry body up against me and I wanted to hear her purring and know that in the night I am not alone and I am being loved when everyone is asleep... I love the sound of the purr what an amazing sound and scientist still don`t really understand how and why they do it. But I do they are singing their love song and there is no sweeter music to my ears.. Just think if we could purr our happiness and everyone would hear it. Wouldn't that be great... If we didn't hide it, it just happened when we didn't even realize it...Wow what a thing.. walking down the street and hear a melody of happiness... a choir of happiness that we have no control over it....I can hear it now...PUUUUURRRRRRRRRR.
So I went to loyalist yesterday and participated in the poverty challenge. I did one in May and it was for high school students and it was very successful. Yesterday it was for students who were in the 1st & 2nd year social worker programs and child and service worker programs, people who would be on the front lines dealing with poverty issues. It was a good day. I was very tired and struggled a bit and had to leave early but they were so very gracious with me.. and I was blessed so richly again. God has used my story so many times to open hearts and touch people. I am thankful for my story, I never ever thought I would say that but, he has used me to open up
op7^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^i^^^^^^^^4^b hben ( sorry Zazzy cat helping with the blog as she walked over my key board...lol) doors and hearts and am so thankful.....Going through the stuff I sure wasn`t and crying why!!! so many times and how much stronger do I need to be! Well I guess we know how much stronger I really do need to be....I need to be strong enough to fight for my life and all that I believe in and all the good things God can still use me for.....and I have so much love to give. My heart has gotten bigger ( medically speaking which is not good ) but I think God is just allowing me more room for all the love I am feeling from all you amazing people...
I have to go for a emergency CT scan today...I think things are growing faster than they want them to my neck and face is starting to swell even bigger and they are concerned... In Bowmanville at 11:30. Does anyone wanna go for a drive with me. I would take my jeep as I am more comfortable. My cousin is here from PEI, but never driven the 401 and in PEI there is no place to go faster than 80 kilometers ( never thought about that...lol) something else we take for granted....so she really isn't comfortable and I don't wanna push her too far out of her comfort zone...The test is only like 15 minutes long and then I thought lunch and home again. So if you are interested message me or my number is in the book...
So, I am all day tests tomorrow and Monday, Tuesday my husband`s Uncles funeral in Hamilton which I hope to go to. Then next Wednesday full day at Oshawa again so this is my next week. I guess Ill find out whats happening to me tomorrow, which is hard to do but what do they sing ``one day at a time sweet Jesus....``
Oh, Yes we have our big tattoo extravaganza again, so if you or a friend needs a tattoo ( if a tattoo is a need) please let me know... I really would like to make it worth his while for the long drive and the time and talent he has given to me and my family.
so my dear friends again, I say thank you for your prayers and your support . I wish I could express how important this blog and all of you have become to me to help me work out my thoughts, pains, my fears, my blessings, and joys, you are more than friends you are my brothers and sisters in Christ and I thank God for each and everyone of you.....
GO TEAM AWESOME!!!!!!!
Well, big news I got a baby kitty and her name is Zazzy Cat! I have been looking for one since august and finally found one, actually my oldest son Jon gave her to me.. anyone who knows me, knows if not properly controlled ( only in this department of my life) could end up being the crazy cat woman with ninety nine cats and I would know all their names. I LOVE Cats.....This kitty is a blessing to me. I struggled with getting one because I didn't want to have one and then leave her....but even if I do she will continued to be loved by my family. It is actually very selfish of me to do this but I wanted not to be alone in the night I wanted to feel the warm little furry body up against me and I wanted to hear her purring and know that in the night I am not alone and I am being loved when everyone is asleep... I love the sound of the purr what an amazing sound and scientist still don`t really understand how and why they do it. But I do they are singing their love song and there is no sweeter music to my ears.. Just think if we could purr our happiness and everyone would hear it. Wouldn't that be great... If we didn't hide it, it just happened when we didn't even realize it...Wow what a thing.. walking down the street and hear a melody of happiness... a choir of happiness that we have no control over it....I can hear it now...PUUUUURRRRRRRRRR.
So I went to loyalist yesterday and participated in the poverty challenge. I did one in May and it was for high school students and it was very successful. Yesterday it was for students who were in the 1st & 2nd year social worker programs and child and service worker programs, people who would be on the front lines dealing with poverty issues. It was a good day. I was very tired and struggled a bit and had to leave early but they were so very gracious with me.. and I was blessed so richly again. God has used my story so many times to open hearts and touch people. I am thankful for my story, I never ever thought I would say that but, he has used me to open up
op7^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^i^^^^^^^^4^b hben ( sorry Zazzy cat helping with the blog as she walked over my key board...lol) doors and hearts and am so thankful.....Going through the stuff I sure wasn`t and crying why!!! so many times and how much stronger do I need to be! Well I guess we know how much stronger I really do need to be....I need to be strong enough to fight for my life and all that I believe in and all the good things God can still use me for.....and I have so much love to give. My heart has gotten bigger ( medically speaking which is not good ) but I think God is just allowing me more room for all the love I am feeling from all you amazing people...
I have to go for a emergency CT scan today...I think things are growing faster than they want them to my neck and face is starting to swell even bigger and they are concerned... In Bowmanville at 11:30. Does anyone wanna go for a drive with me. I would take my jeep as I am more comfortable. My cousin is here from PEI, but never driven the 401 and in PEI there is no place to go faster than 80 kilometers ( never thought about that...lol) something else we take for granted....so she really isn't comfortable and I don't wanna push her too far out of her comfort zone...The test is only like 15 minutes long and then I thought lunch and home again. So if you are interested message me or my number is in the book...
So, I am all day tests tomorrow and Monday, Tuesday my husband`s Uncles funeral in Hamilton which I hope to go to. Then next Wednesday full day at Oshawa again so this is my next week. I guess Ill find out whats happening to me tomorrow, which is hard to do but what do they sing ``one day at a time sweet Jesus....``
Oh, Yes we have our big tattoo extravaganza again, so if you or a friend needs a tattoo ( if a tattoo is a need) please let me know... I really would like to make it worth his while for the long drive and the time and talent he has given to me and my family.
so my dear friends again, I say thank you for your prayers and your support . I wish I could express how important this blog and all of you have become to me to help me work out my thoughts, pains, my fears, my blessings, and joys, you are more than friends you are my brothers and sisters in Christ and I thank God for each and everyone of you.....
GO TEAM AWESOME!!!!!!!
Wednesday, 20 November 2013
Good Morning Team Awesome...
Please take note of when this is posted.. I slept all night.....Thank you God!
I needed that sleep so badly. We take it for granted just go to bed close your eyes and sleep. It's not that easy for many many people. Then especially when you're feeling you have to sleep and rest, it's all you want to do but cant. Not sure if it was the getting of the news about the drug..or "The Champagne Casino Shenanigans" or my radiation is finally hit me with the exhaustion I was expecting, but I slept.... hallelujah I slept. I actually to force my self out of bed to get up and get going here.....
I have a busy day again, I will be speaking at Loyalist college and be involved in the Poverty Challenge. It is an amazing day that will teach a lot of people about the truth of poverty. These young adults will be given snippets of my life to live for a day, have challenges presented to them and figure out how to survive and day in the life of me....at the end of the day I am introduced as the real HOPE, and tell them how I did it It is extensively emotional and eye opening as they do not know the whole day that I am with them that this person is real let alone in the room with them listening to their comments and judgments of how someone could get themselves in these positions. There is about 6-8 of us who share our story with these kids. I did it in May and was extremely blessed and touched as you see where they start int eh morning with there thoughts of poverty and for people ( lazy, stupid, unmotivated and by the end of the day it changes to resourceful, courageous, hard working, smart..etc) It is a blessing to be involved. It will be a long day but I hope to get through it...My cousinShari Jarvis will be with me for the day to help me out.
So, yesterday recap......
1. The government approved me being able to take the drug..
2. Brad Woody Stone, insurance company has agreed to pay 100% of this drug with no limits on our plan ( means I can take it forever if needed) we just pay the prescription fee.
3.( Things get fuzzy here but to me are not really that important after 1 and 2..)there were several calls when I got home yesterday from doctors hospitals, etc so I'm still booked for chemo on Friday???until I hear something different and am booked next Wednesday for more tests and to see Dr Rothenstien my Chemical oncologist, so I don't know if I still have to do 1 round of chemo for the government. Then start on my drug next Wednesday. This I have to clear up...but just details...
4. I learned that the mutant gene that I have that only 3% of people with lung cancer get it and it is a really really good thing to have... this is what it is called "Anaplastic lymphoma kinase (ALK) fusion oncogene positive non-small cell lung cancer" Essentially they have targeted that the ALK gene is the gene that turns the engine of the cancer cells on and off.. All research and drugs and good things are happening with this gene and that more treatments and cures are happening with this gene then any other lung cancer advancement. So being in the 3% is the best thing that could have ever happened to me... go figure....
5. I crossed off something on my bucket list.....We rented a limo ( everyone chipped in which was nice) and I had a driver and went to Gananoque Casino ( now not really anything I am into don`t like spending money at all but I wanted something silly and fun)and we did. There was 8 in total. 7 lovely ladies and John, Donna Margaret Duncan husband alias ( East coast Johnny) he works at SPELMER CHRYSLER in Trenton and has the biggest heart in the world. ( if you need a vehicle go to him he is a great guy and will help you out) He looked after us and entertained us. The casino was amazing. They met us at the front door (3 of the officials) greeted us and made us VIP S. ( even though we didn't have the bank roll....lol) They gave me gifts bags at the end of the day we had a private table for black jack and a teacher and the manager kept tabs on us even when we went to eat, making sure everything was fine and that I was a great day...We laughed and had fun. I never spent a nickle there was always chips in front of me although I was winning most of the time. We started with 2 bottles of Champagne and then we got as far as Nappanee and stopped at the liquor store and bought another 5 bottles of Champagne and whiskey and beer.. Then we got pulled over by a unhappy police officer just looking for a reason to write a ticket, and he did and then gave me some attitude about drinking in the morning..I didn't even get a chance to play the `C` and tell him we were on a bucket list day, he wasn't worth it and we were laughing and thinking this was a great thing.....
So I felt so blessed yesterday and God did make a way where there seemed to be no way.....I knew if I left him alone he`d figure it out....lol
I had already won the big prize before we even went to the casino. A chance.....
A chance to fight, and live a little longer, and maybe revoke my bucket list again and have another stab at crossing something off of it.......and beat this F*?/ing disease.....
Thank you for all your prayers and love you are my Balcony People and My TEAM AWESOME``... I'm thinking we need theme music.....any suggestions......
Please take note of when this is posted.. I slept all night.....Thank you God!
I needed that sleep so badly. We take it for granted just go to bed close your eyes and sleep. It's not that easy for many many people. Then especially when you're feeling you have to sleep and rest, it's all you want to do but cant. Not sure if it was the getting of the news about the drug..or "The Champagne Casino Shenanigans" or my radiation is finally hit me with the exhaustion I was expecting, but I slept.... hallelujah I slept. I actually to force my self out of bed to get up and get going here.....
I have a busy day again, I will be speaking at Loyalist college and be involved in the Poverty Challenge. It is an amazing day that will teach a lot of people about the truth of poverty. These young adults will be given snippets of my life to live for a day, have challenges presented to them and figure out how to survive and day in the life of me....at the end of the day I am introduced as the real HOPE, and tell them how I did it It is extensively emotional and eye opening as they do not know the whole day that I am with them that this person is real let alone in the room with them listening to their comments and judgments of how someone could get themselves in these positions. There is about 6-8 of us who share our story with these kids. I did it in May and was extremely blessed and touched as you see where they start int eh morning with there thoughts of poverty and for people ( lazy, stupid, unmotivated and by the end of the day it changes to resourceful, courageous, hard working, smart..etc) It is a blessing to be involved. It will be a long day but I hope to get through it...My cousinShari Jarvis will be with me for the day to help me out.
So, yesterday recap......
1. The government approved me being able to take the drug..
2. Brad Woody Stone, insurance company has agreed to pay 100% of this drug with no limits on our plan ( means I can take it forever if needed) we just pay the prescription fee.
3.( Things get fuzzy here but to me are not really that important after 1 and 2..)there were several calls when I got home yesterday from doctors hospitals, etc so I'm still booked for chemo on Friday???until I hear something different and am booked next Wednesday for more tests and to see Dr Rothenstien my Chemical oncologist, so I don't know if I still have to do 1 round of chemo for the government. Then start on my drug next Wednesday. This I have to clear up...but just details...
4. I learned that the mutant gene that I have that only 3% of people with lung cancer get it and it is a really really good thing to have... this is what it is called "Anaplastic lymphoma kinase (ALK) fusion oncogene positive non-small cell lung cancer" Essentially they have targeted that the ALK gene is the gene that turns the engine of the cancer cells on and off.. All research and drugs and good things are happening with this gene and that more treatments and cures are happening with this gene then any other lung cancer advancement. So being in the 3% is the best thing that could have ever happened to me... go figure....
5. I crossed off something on my bucket list.....We rented a limo ( everyone chipped in which was nice) and I had a driver and went to Gananoque Casino ( now not really anything I am into don`t like spending money at all but I wanted something silly and fun)and we did. There was 8 in total. 7 lovely ladies and John, Donna Margaret Duncan husband alias ( East coast Johnny) he works at SPELMER CHRYSLER in Trenton and has the biggest heart in the world. ( if you need a vehicle go to him he is a great guy and will help you out) He looked after us and entertained us. The casino was amazing. They met us at the front door (3 of the officials) greeted us and made us VIP S. ( even though we didn't have the bank roll....lol) They gave me gifts bags at the end of the day we had a private table for black jack and a teacher and the manager kept tabs on us even when we went to eat, making sure everything was fine and that I was a great day...We laughed and had fun. I never spent a nickle there was always chips in front of me although I was winning most of the time. We started with 2 bottles of Champagne and then we got as far as Nappanee and stopped at the liquor store and bought another 5 bottles of Champagne and whiskey and beer.. Then we got pulled over by a unhappy police officer just looking for a reason to write a ticket, and he did and then gave me some attitude about drinking in the morning..I didn't even get a chance to play the `C` and tell him we were on a bucket list day, he wasn't worth it and we were laughing and thinking this was a great thing.....
So I felt so blessed yesterday and God did make a way where there seemed to be no way.....I knew if I left him alone he`d figure it out....lol
I had already won the big prize before we even went to the casino. A chance.....
A chance to fight, and live a little longer, and maybe revoke my bucket list again and have another stab at crossing something off of it.......and beat this F*?/ing disease.....
Thank you for all your prayers and love you are my Balcony People and My TEAM AWESOME``... I'm thinking we need theme music.....any suggestions......
Tuesday, 19 November 2013
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