Sometimes I can't be everything to everyone.
Right now my husband is fighting for his life literally.
He's showing new symptoms and ignoring it.
The stress there is do I call the Dr. or do I respect his wishes and listen to him.
It's always on me.
His mom would call.
And expects me to, cuz it could be something they can fix and might kill him.
So I should call.
But he asked me not to.
Well he said he wants me to listen to him.
And that I could call.
So while I'm being strong or barely able to be strong for him and our daughter and myself to take care of everything in our life.
I might not be able to be there for friends.
Even if they are going through something equally horrible.
I am not being selfish.
I have to save my strength for him.
I shouldn't feel badly.
They have support.
We don't have a lot of support.
Most people don't know what we are going through.
But if I needed help I would ask.
This isn't something anyone could help me on anyway.
I'm just that way.
I want help but will never ask.
Help as in someone please tell me what I should be doing.
How do I care for my 34 year old husband fighting brain cancer?
Showing posts with label brain cancer. Show all posts
Showing posts with label brain cancer. Show all posts
Wednesday, May 30, 2012
Monday, May 28, 2012
P.S. I love you
I went through my P.S. I love you faze, I read the book was disappointed by the not half as good movie, but intrigued by the hotness of Jeffrey Dean Morgan so it's half good... :) heehee
But I watched it today...now remembering how Gerry dies, a brain tumor. How different the movie is to me now. I cried...a bit. Which I feel like sometimes my tears will be dried up by now.
The entire movie to me now means getting through a tragic loss and moving on, cuz we are alone in the end. We are. This is my life. Right now I'm sharing it with Ben & Willow but overall when all is said and done I will be alone.
I get so frustrated when we aren't getting along knowing deep down it's so not important. I feel so much guilt when I don't want to do something, I have my excuses...then I hate myself afterwards like wth is my problem.
I miss Ben. He's still Ben or this new Ben...but I miss him so much. I try so hard to look beyond everything and appreciate our life and our time together. I try. I'm not succeeding though.
I don't appreciate the small things today. :(
I'm pissed about the big things!
I'm mad as hell that our life has been f'd up and it won't ever be the same and most likely anytime soon will suck more. :/ That's what we have to look forward to. That's why it's so easy to ignore thoughts of our "future". I try to be positive but deep down...I know better.
We live silently side by side, ignoring everything around us. Just to get through each day with some sort of peace and happiness. Knowing all the while it will end sooner than later. Those dreams we had are gone, well not gone they still exist, but now we realize that they won't happen. The Drs. want us to stay positive, cuz that's what keeps sick people alive...positivity. yep. So they tell you things like oh I have this patient they've been dx for 20 years out...and in my mind I'm like ok...Ben's DX at 32 so that means he might live until he's 50 if we are super duper lucky. Or will he be tortured for years to come?
This is stuff I can't tell anyone so I'm here knowing that people can read it, but I don't care if you judge me. I'm selfish...sorry I wanted the one person I loved and relied on to live until I died what about that? I wanted my husband to see his daughter drive & graduate & help me with her first boyfriend & to walk her down the aisle if she gets married...to be a grandparent with me...once Willow graduated and moved on with her life we were going to enjoy us for once in a long time. We got married so young and had her right away, it's always been about her...we had done things but not very often...she's always first of course. So it was going to be our time together. Now I hope he makes it to see her turn 11. I hope he's capable and understanding and is here.
In the spare room living his life. Seperate from us. We do eat dinner together, which is huge. We try but emotions and tempers on all our accounts are always so high and bad that usually now when we do do something, we fight and or someone ends up mad and sad. It sucks.
shhhh I know I'm appreciative, I have had him almost 2 years out DX of a horrible terminal disease that takes people daily. I've been a bit close to a couple...well not close but close enough. I hate getting close to anyone sick now. I can't lose him.
I can't give him everything I've ever had and lose him. And how will I make it up to Willow.That's when I have to remind myself to take this crap one day ONE DAY at a time...not worry about the future cuz I can't control what's going to happen.
I just wish I had that on a recorder to remind myself daily. I can do this shit!
But I watched it today...now remembering how Gerry dies, a brain tumor. How different the movie is to me now. I cried...a bit. Which I feel like sometimes my tears will be dried up by now.
The entire movie to me now means getting through a tragic loss and moving on, cuz we are alone in the end. We are. This is my life. Right now I'm sharing it with Ben & Willow but overall when all is said and done I will be alone.
I get so frustrated when we aren't getting along knowing deep down it's so not important. I feel so much guilt when I don't want to do something, I have my excuses...then I hate myself afterwards like wth is my problem.
I miss Ben. He's still Ben or this new Ben...but I miss him so much. I try so hard to look beyond everything and appreciate our life and our time together. I try. I'm not succeeding though.
I don't appreciate the small things today. :(
I'm pissed about the big things!
I'm mad as hell that our life has been f'd up and it won't ever be the same and most likely anytime soon will suck more. :/ That's what we have to look forward to. That's why it's so easy to ignore thoughts of our "future". I try to be positive but deep down...I know better.
We live silently side by side, ignoring everything around us. Just to get through each day with some sort of peace and happiness. Knowing all the while it will end sooner than later. Those dreams we had are gone, well not gone they still exist, but now we realize that they won't happen. The Drs. want us to stay positive, cuz that's what keeps sick people alive...positivity. yep. So they tell you things like oh I have this patient they've been dx for 20 years out...and in my mind I'm like ok...Ben's DX at 32 so that means he might live until he's 50 if we are super duper lucky. Or will he be tortured for years to come?
This is stuff I can't tell anyone so I'm here knowing that people can read it, but I don't care if you judge me. I'm selfish...sorry I wanted the one person I loved and relied on to live until I died what about that? I wanted my husband to see his daughter drive & graduate & help me with her first boyfriend & to walk her down the aisle if she gets married...to be a grandparent with me...once Willow graduated and moved on with her life we were going to enjoy us for once in a long time. We got married so young and had her right away, it's always been about her...we had done things but not very often...she's always first of course. So it was going to be our time together. Now I hope he makes it to see her turn 11. I hope he's capable and understanding and is here.
In the spare room living his life. Seperate from us. We do eat dinner together, which is huge. We try but emotions and tempers on all our accounts are always so high and bad that usually now when we do do something, we fight and or someone ends up mad and sad. It sucks.
shhhh I know I'm appreciative, I have had him almost 2 years out DX of a horrible terminal disease that takes people daily. I've been a bit close to a couple...well not close but close enough. I hate getting close to anyone sick now. I can't lose him.
I can't give him everything I've ever had and lose him. And how will I make it up to Willow.That's when I have to remind myself to take this crap one day ONE DAY at a time...not worry about the future cuz I can't control what's going to happen.
I just wish I had that on a recorder to remind myself daily. I can do this shit!
Friday, May 25, 2012
something poor people say
So I've come to the conclusion that I say things that poor people say like money isn't everything. :P
I think about it a lot...like that watch that girl is wearing costs as much as my house. Or she just spent what on her hair I could have paid rent. Or are rich people happier?
Well in the end of course when we have more money it takes some worries off of our plates. But money can't keep all evil away. So if we did have money, the Drs would be getting it now.
It kind of makes me question it all. since I was 15 and knew I would have to work to get a car to go to work. To go have fun. To have my own place, to buy everything for myself. Now at some point you decide and make your own rules up to what you want or how you want to live. When we decided to get our first apt together, we both had decent jobs and no plans really for the future. Then we progressed through this life with of course we've been together this long one of us has a decent job, rent is so high let's buy a home. So then of course a year later we are like of course it's time to get married. A year later...I'm a new mom and wife living in our new home and don't forget the new dog we rescued. Some how life was crazy and perfect at the same time. We fought we laughed we loved. I loved my life. Now that I reflect. I loved being at home caring for my family.
We went through a lot. Ben always trying to find the better job...he would and then something would happen and he'd be right back to where he started. For those of you all out there thinking mechanics make good money FIND ANOTHER JOB! He would have to have expensive tools and then make low income. It made no sense. Very dangerous working in the extreme cold to extreme heat...not a lot of perks just say. And then one day he got his break...a guy noticed how smart he was and helped him get a great job. Where we live that is how it's done. And since Ben didn't have a father, he passed when he was ten, he never got that chance of someone helping him out. He was always on his own. To make his own path and sometimes he needed help. So this guy got him this awesome union job, insurance, pension. high pay, new work truck, all of it! It was amazing. our life changed. Ben had his ups and downs it was learning something new and he did great at it. I was so proud of him. He was so happy. We were like ok great time to sell our home and move on to bigger and better things like a home we can make roots and stay in forever. We did sell our first home after 8 years...very stressful btw. And then we ended up moving in with his mom because we needed to save up for a down payment, we gave ourselves 6 months. So around that time we found our place...we had a closing date. It was all good to go...our things would be out of storage and we were packed. Then it happened. Ben was told one week before we were to close that he was getting laid off. No notice. No nothing. It was all gone like that. He got unemployment which was 8 dollars less an hour than he had been making. We lost our insurance. We had sold his truck so now he didn't have a vehicle. We lost the house we were going to retire in. Plans gone. We grieved hard for that loss. Our little daughter right in the middle of all that too. On top of now living with his MNL thankfullly she helped us through but we had to file bankruptcy because we couldn't pay our bills.
Things got worse his brother moved in with his daughter and the drama was never ending. Stress was so high. So as he struggled 7 months to find a new job that paid less than he had started out at this previous job...it was bad. :( But it was income. So we started looking for a rental they were too high. Then his mom mentions buying us a house and we can rent it out. I dind't want to at first. But things started getting worse and we got desperate. So we found this cheap fixer uppper and we moved 30 minutes away from all we knew. We had to. He was working and we were fixing up this house. We started all over in this new town and created a life. Sort of. I knew Ben missed our old town and now I felt badly. But it was nice to get away. I want to get away though. I still do.
So then not a year later, Ben get's DX with brain cancer...lost his job. We lost it all nearly...all we had was each other to lean on. It didn't matter all of it. Yes we've learned a lot but none of it even matters. As far as worrying about raises and money. When you have nothing it gives you a new perspective. Literally he got his last paycheck, we lived off that for the first month, paying bills and medicines. And I got help with what I could thankful for all that helped us. That was huge for us getting to stay in our home. We had NO income for over a month. Then he got a surprisingly got a small disability check from work...we never knew was available, he thankfully had been working a year cuz otherwise wouldn't have gotten it. It was about half of what he was bringing home. So with the help of local agencies and the state we got to pay rent and stay in our home. Ben had what he needed. We got so much help those first few months it got us through.
Around 7 months later he finally got approved for Disability for 3 years anyways. We are so thankful. It took so much stress off of me. I don't count on it though...things happen. But for now we are ok. And get to stay in our home which makes Ben happy. Now that our house is up to par we like it. When Ben didn't drive for a year and we are so far away from family to even help us out with Willow and him...and pets. It was tough. They don't have paramedics we learned they have volunteer EMTs which some were nice but I didn't feel safe with them. :( :( :(
So we are one year and 9 months out from DX. Ben is now looking at recurrance and we are at this point in our life that we are exhausted with being strong!!!
It's like this. Our bills are paid, ironically when you get disability they take an average of what you've made over the length of period you've worked, so Ben is stuck now in that forever not making much, something he worked so hard to get away from...is now our only hope. We make a little less than what he did when he had his last job. We got help from family and paid our big bills off and now only have living expenses...and a child so that is tough sometimes. We might not need a lot to live but she does.
And then we come to what's most important now.
It's not money. Money is for survival and fun.
But it's not on the top of my list as long as our needs are being meant. If I did work, not only would it pile on my stress cuz I don't want to leave Willow alone with Ben for many reasons...but it could screw up all that we have going on. We are stuck in this life for now. I don't know how to help so my solution is to go to school while I can. I signed up for this fall. And wow Ben is now dealing with new patchy spots in his brain MRI...woowow exactly my biggest fear. No one gets it. I might have to quit to care for him. We were in the hospital so much the first time around cuz he struggled with seizures among other things.
We know it could always be worse though and that's what gives us the strength to get through another day.
I've changed so much. I feel 100 years older. but it's like this...somedays I wonder why I'm meant to be alive. I wish I wasn't somedays. I try really hard to think of all the good that I've experienced it's somehow shadowed by all the bad...I have to try really hard to focus.
Focusing on Ben and making him happy. Or helping him in whatever way I can to get through this bullshit with ease and or less anxiety as possible. It is not easy. Especially when I'm freaking out inside.
So my point. After 33 years of living I am learning what is really important and not just talking about it. Yes I will spend money we don't have on things we don't need...but to make memories to create smiles and laughter. We now have a new dog as we had to put our old one down last year...she has brought a lot of diversion to the sadness...she's a little chihuahua and makes us laugh every single day! When she isn't tearing up things lol It is a bit stressful when I have to choose celebrating a birthday over buying groceries...I like to show people how much I care and I need to learn how to do that cheaper! lol
I would like to be more healthy, mentally and physically. Be smarter on my choices. Remind myself to not react and just to listen. Dont' try to fix things but just be there for people I love. It hurts but when I allow myself to think ahead, I don't know if Ben will be in my life or not. I fantasize about traveling and seeing a new place every week. I want to live more.
Right now I am here for Ben and my daughter. And his mom and my mom. And my friends. One day this might be clearer on why I'm going through these things. Why the one person I love more than myself is hurting and going through this...dying from this disease. I don't want to wait to live for now this is my life. And I take it day by day. Now what do we live for? Now what to we fight for...Ben's life.
I think about it a lot...like that watch that girl is wearing costs as much as my house. Or she just spent what on her hair I could have paid rent. Or are rich people happier?
Well in the end of course when we have more money it takes some worries off of our plates. But money can't keep all evil away. So if we did have money, the Drs would be getting it now.
It kind of makes me question it all. since I was 15 and knew I would have to work to get a car to go to work. To go have fun. To have my own place, to buy everything for myself. Now at some point you decide and make your own rules up to what you want or how you want to live. When we decided to get our first apt together, we both had decent jobs and no plans really for the future. Then we progressed through this life with of course we've been together this long one of us has a decent job, rent is so high let's buy a home. So then of course a year later we are like of course it's time to get married. A year later...I'm a new mom and wife living in our new home and don't forget the new dog we rescued. Some how life was crazy and perfect at the same time. We fought we laughed we loved. I loved my life. Now that I reflect. I loved being at home caring for my family.
We went through a lot. Ben always trying to find the better job...he would and then something would happen and he'd be right back to where he started. For those of you all out there thinking mechanics make good money FIND ANOTHER JOB! He would have to have expensive tools and then make low income. It made no sense. Very dangerous working in the extreme cold to extreme heat...not a lot of perks just say. And then one day he got his break...a guy noticed how smart he was and helped him get a great job. Where we live that is how it's done. And since Ben didn't have a father, he passed when he was ten, he never got that chance of someone helping him out. He was always on his own. To make his own path and sometimes he needed help. So this guy got him this awesome union job, insurance, pension. high pay, new work truck, all of it! It was amazing. our life changed. Ben had his ups and downs it was learning something new and he did great at it. I was so proud of him. He was so happy. We were like ok great time to sell our home and move on to bigger and better things like a home we can make roots and stay in forever. We did sell our first home after 8 years...very stressful btw. And then we ended up moving in with his mom because we needed to save up for a down payment, we gave ourselves 6 months. So around that time we found our place...we had a closing date. It was all good to go...our things would be out of storage and we were packed. Then it happened. Ben was told one week before we were to close that he was getting laid off. No notice. No nothing. It was all gone like that. He got unemployment which was 8 dollars less an hour than he had been making. We lost our insurance. We had sold his truck so now he didn't have a vehicle. We lost the house we were going to retire in. Plans gone. We grieved hard for that loss. Our little daughter right in the middle of all that too. On top of now living with his MNL thankfullly she helped us through but we had to file bankruptcy because we couldn't pay our bills.
Things got worse his brother moved in with his daughter and the drama was never ending. Stress was so high. So as he struggled 7 months to find a new job that paid less than he had started out at this previous job...it was bad. :( But it was income. So we started looking for a rental they were too high. Then his mom mentions buying us a house and we can rent it out. I dind't want to at first. But things started getting worse and we got desperate. So we found this cheap fixer uppper and we moved 30 minutes away from all we knew. We had to. He was working and we were fixing up this house. We started all over in this new town and created a life. Sort of. I knew Ben missed our old town and now I felt badly. But it was nice to get away. I want to get away though. I still do.
So then not a year later, Ben get's DX with brain cancer...lost his job. We lost it all nearly...all we had was each other to lean on. It didn't matter all of it. Yes we've learned a lot but none of it even matters. As far as worrying about raises and money. When you have nothing it gives you a new perspective. Literally he got his last paycheck, we lived off that for the first month, paying bills and medicines. And I got help with what I could thankful for all that helped us. That was huge for us getting to stay in our home. We had NO income for over a month. Then he got a surprisingly got a small disability check from work...we never knew was available, he thankfully had been working a year cuz otherwise wouldn't have gotten it. It was about half of what he was bringing home. So with the help of local agencies and the state we got to pay rent and stay in our home. Ben had what he needed. We got so much help those first few months it got us through.
Around 7 months later he finally got approved for Disability for 3 years anyways. We are so thankful. It took so much stress off of me. I don't count on it though...things happen. But for now we are ok. And get to stay in our home which makes Ben happy. Now that our house is up to par we like it. When Ben didn't drive for a year and we are so far away from family to even help us out with Willow and him...and pets. It was tough. They don't have paramedics we learned they have volunteer EMTs which some were nice but I didn't feel safe with them. :( :( :(
So we are one year and 9 months out from DX. Ben is now looking at recurrance and we are at this point in our life that we are exhausted with being strong!!!
It's like this. Our bills are paid, ironically when you get disability they take an average of what you've made over the length of period you've worked, so Ben is stuck now in that forever not making much, something he worked so hard to get away from...is now our only hope. We make a little less than what he did when he had his last job. We got help from family and paid our big bills off and now only have living expenses...and a child so that is tough sometimes. We might not need a lot to live but she does.
And then we come to what's most important now.
It's not money. Money is for survival and fun.
But it's not on the top of my list as long as our needs are being meant. If I did work, not only would it pile on my stress cuz I don't want to leave Willow alone with Ben for many reasons...but it could screw up all that we have going on. We are stuck in this life for now. I don't know how to help so my solution is to go to school while I can. I signed up for this fall. And wow Ben is now dealing with new patchy spots in his brain MRI...woowow exactly my biggest fear. No one gets it. I might have to quit to care for him. We were in the hospital so much the first time around cuz he struggled with seizures among other things.
We know it could always be worse though and that's what gives us the strength to get through another day.
I've changed so much. I feel 100 years older. but it's like this...somedays I wonder why I'm meant to be alive. I wish I wasn't somedays. I try really hard to think of all the good that I've experienced it's somehow shadowed by all the bad...I have to try really hard to focus.
Focusing on Ben and making him happy. Or helping him in whatever way I can to get through this bullshit with ease and or less anxiety as possible. It is not easy. Especially when I'm freaking out inside.
So my point. After 33 years of living I am learning what is really important and not just talking about it. Yes I will spend money we don't have on things we don't need...but to make memories to create smiles and laughter. We now have a new dog as we had to put our old one down last year...she has brought a lot of diversion to the sadness...she's a little chihuahua and makes us laugh every single day! When she isn't tearing up things lol It is a bit stressful when I have to choose celebrating a birthday over buying groceries...I like to show people how much I care and I need to learn how to do that cheaper! lol
I would like to be more healthy, mentally and physically. Be smarter on my choices. Remind myself to not react and just to listen. Dont' try to fix things but just be there for people I love. It hurts but when I allow myself to think ahead, I don't know if Ben will be in my life or not. I fantasize about traveling and seeing a new place every week. I want to live more.
Right now I am here for Ben and my daughter. And his mom and my mom. And my friends. One day this might be clearer on why I'm going through these things. Why the one person I love more than myself is hurting and going through this...dying from this disease. I don't want to wait to live for now this is my life. And I take it day by day. Now what do we live for? Now what to we fight for...Ben's life.
Friday, May 18, 2012
Today YOU are my counselor
I'm truly in need of a friend right now, why aren't any of my friends early risers? lol I guess I need a new friend. My mind has been going in circles for the past few days.
Am I a good friend?
What does that mean?
Why do I feel like I can't or shouldn't go down a certain path?
even though it may be too late.
Dont' listen to others.
Have my own mind.
Be a good person however I can.
I wish life were a little bit easier some days.
I want to crawl in a hole or runaway when things get too complicated.
Since Ben got sick, I definitely am right on the don't want to be close to anyone and see them go through pain or suffer. I don't want to see Ben go through it either but I can't hide from my husband. I dont' want to be close to anyone. That's why I like online friends...you get support but you dont' have to actually see them go through the pain...although you feel for them and can send them a card.
Is that the friend I am. A card friend. Nothing more nothing less. :( What's that say about me?
I talk a good game of wanting to support people with cancer, but a friend of mine has a recurrance situation and I run and hide because I don't know how to deal with it. It's too close to home. It's alot of things. But I want to continue to be a good friend. We both got bad news on the same week. I'm not sure how bad hers is, but she is scared. And I'm scared but I have to focus on other things so I can move forward and not lose my mind. I think it's too much reality. I don't want to care but I do care.
I'm feeling a bit f'd up for even thinking the way I do this week. Baked goods might help?!
I'm busy on purpose with Ben's bday party, that to me is number one. For months Ben and I have been struggling and right now is important that I refocus and become the wife he needs me to be, not only that but Wil needs me too. Am I capable of being that person that can do it all? Will I regret it either way?
What would I want from me if I were her? I think she expects me to be there for her and I dont' like that kinda of pressure...I don't expect her to be there for me. Cuz I understand how hard it is. I had hoped her MRI would be ok and she could move on. I want to be this magical entinty that fixes everything for everyone and then I hate myself for failing cuz it's unrealistic.
I have to refocus on what is important to me, not listen to anyone else's opinion on the matter and move on.
I'm ready to move but mostly because I want a fresh start. Since everyone was swooping into to save us from drowning...we have no chance of ever living a normal life here. People care for sure, but I'd like to live where no one knew so I wouldn't have to answer how's Ben doing? lol cuz ummm let me see...living with brain cancer sucks! That's how he's doing. He's scared he's going to die or have a seizure mmost days. He hides everything and acts like he's ok. :(
I'm hanging on a thread here and really could use a friend.
I need someone to talk to right now!!! Who do I have?
Am I a good friend?
What does that mean?
Why do I feel like I can't or shouldn't go down a certain path?
even though it may be too late.
Dont' listen to others.
Have my own mind.
Be a good person however I can.
I wish life were a little bit easier some days.
I want to crawl in a hole or runaway when things get too complicated.
Since Ben got sick, I definitely am right on the don't want to be close to anyone and see them go through pain or suffer. I don't want to see Ben go through it either but I can't hide from my husband. I dont' want to be close to anyone. That's why I like online friends...you get support but you dont' have to actually see them go through the pain...although you feel for them and can send them a card.
Is that the friend I am. A card friend. Nothing more nothing less. :( What's that say about me?
I talk a good game of wanting to support people with cancer, but a friend of mine has a recurrance situation and I run and hide because I don't know how to deal with it. It's too close to home. It's alot of things. But I want to continue to be a good friend. We both got bad news on the same week. I'm not sure how bad hers is, but she is scared. And I'm scared but I have to focus on other things so I can move forward and not lose my mind. I think it's too much reality. I don't want to care but I do care.
I'm feeling a bit f'd up for even thinking the way I do this week. Baked goods might help?!
I'm busy on purpose with Ben's bday party, that to me is number one. For months Ben and I have been struggling and right now is important that I refocus and become the wife he needs me to be, not only that but Wil needs me too. Am I capable of being that person that can do it all? Will I regret it either way?
What would I want from me if I were her? I think she expects me to be there for her and I dont' like that kinda of pressure...I don't expect her to be there for me. Cuz I understand how hard it is. I had hoped her MRI would be ok and she could move on. I want to be this magical entinty that fixes everything for everyone and then I hate myself for failing cuz it's unrealistic.
I have to refocus on what is important to me, not listen to anyone else's opinion on the matter and move on.
I'm ready to move but mostly because I want a fresh start. Since everyone was swooping into to save us from drowning...we have no chance of ever living a normal life here. People care for sure, but I'd like to live where no one knew so I wouldn't have to answer how's Ben doing? lol cuz ummm let me see...living with brain cancer sucks! That's how he's doing. He's scared he's going to die or have a seizure mmost days. He hides everything and acts like he's ok. :(
I'm hanging on a thread here and really could use a friend.
I need someone to talk to right now!!! Who do I have?
Thursday, May 17, 2012
thankful for the little things
ah first day of not having to wake up early and it's so quiet and peaceful I <3 it. A time to reflect! We had such a good day yesterday! Everyone I know is struggling with something today and always cuz that's life right? I hope you can all find some small peace and happiness in every day. That's all we have. I think we all have our ups and downs and fears and anxieties. Today I have an up. I do believe that we have today and I'm going to make the most of that. That would consist of a bike ride with my fav kid & making chocolate popcorn. :) Small and maybe not huge to alot of people but the small things are what get us through our days. It might be a minute between a 100 minutes of crazy. But I truly appreciate my life. Even with things changing quickly and possibly having to deal with some hard choices coming up, we have to find some peace. Not panic and really take a minute to reflect. While we're going through some hard things, no one isn't. We are not alone. There is always someone who has it worse than us. For now even just for today. I appreciate the little things!
Thursday, May 10, 2012
Right timing
Right timing is there such a thing?
So I finally get an interview at a local place. Which is huge because there is like 5 locals. So they call me for a 2nd interview today.
I'm 2nd guessing it all.
Is it my anxiety? Is it the long list of wth am I doing this right now?
We need money.
Ok, Ben has this new thing that may or may not be cancer in a new spot in his brain. Can't find anymore out for a month. Can I leave him alone with Willow? I would only be 3 minutes away. But alot could happen. I tried being down the road last weekend for a rummage sale and that was a nightmare...Ben doesn't want to watch Willow it's so frustrating for him. Like he loses it. That is not cool for either one of them. So how am I to work or go to school? Should I just give up and stay at home and be scared and miserable all the time?
Screw that!
This last Dr appt has thrown me.
I dont know what i want or how I want to do it all now. I'm so friggin worried.
I have one hour to decide if I go or not. :(
I wish I had one person to talk with to get some advice. I know I'm grown and I need to just do it and not whine so much but I want some advice!
We can live without the money. Sort of.
I don't want to be away from them or leave them alone.
Money or sanity?
I don't think I'll ever have either.
So I finally get an interview at a local place. Which is huge because there is like 5 locals. So they call me for a 2nd interview today.
I'm 2nd guessing it all.
Is it my anxiety? Is it the long list of wth am I doing this right now?
We need money.
Ok, Ben has this new thing that may or may not be cancer in a new spot in his brain. Can't find anymore out for a month. Can I leave him alone with Willow? I would only be 3 minutes away. But alot could happen. I tried being down the road last weekend for a rummage sale and that was a nightmare...Ben doesn't want to watch Willow it's so frustrating for him. Like he loses it. That is not cool for either one of them. So how am I to work or go to school? Should I just give up and stay at home and be scared and miserable all the time?
Screw that!
This last Dr appt has thrown me.
I dont know what i want or how I want to do it all now. I'm so friggin worried.
I have one hour to decide if I go or not. :(
I wish I had one person to talk with to get some advice. I know I'm grown and I need to just do it and not whine so much but I want some advice!
We can live without the money. Sort of.
I don't want to be away from them or leave them alone.
Money or sanity?
I don't think I'll ever have either.
Tuesday, May 8, 2012
MRI results May 7th 2012
Things have changed over night again. This time it's almost expected so not much of a shock. When you get handed shit all the time you learn to deal with it better. Ben's Dr told us his MRI showed new enhancement in patches, that could be cancer or not. The only way to know for sure is to have another MRI in 6 weeks and to see if it grows. This showed up over a 6 month period btw. So if it does grow we might know more so what we are dealing with. The Dr mentioned speaking with the neurosurgeon, he might want a biopsy. GULP! We were like eh all the risk of brain surgery and to find out what this is...when we are pretty sure we already know. Not be be negative, it's the way it works. Once you find brain cancer, that's your life. This is our life. I don't want to even write it in his caring bridge page cuz it will make it that much more real when everyone knows...questions...pity, I don't want it and I KNOW Ben doesn't. Ahh my Ben. Why ?
We talked a real talk. He has had brain cancer all the while this is new maybe new brain cancer so that is where the shock doesn't come in quite as bad as the first time around. When people say that they've survived brain cancer for years...it's the hell they went through staying alive I'm wondering about. It's flipping a coin what is more scary the actual treatments or living with the cancer as long as it allows you to. Control is a figment of our imagination. No one has control. We can however control how we deal with things. I'm numb right now but scared and really f'n sad. so I guess I'm not that numb!
I am not ready to lose Ben mentally or physically. :'(
It hasn't even been 2 years since he was first DX and we are back at it already, not a great sign. Not uncommon so I've heard though. This sucks!
Wil's bus just pulled up, we haven't told her yet...
We talked a real talk. He has had brain cancer all the while this is new maybe new brain cancer so that is where the shock doesn't come in quite as bad as the first time around. When people say that they've survived brain cancer for years...it's the hell they went through staying alive I'm wondering about. It's flipping a coin what is more scary the actual treatments or living with the cancer as long as it allows you to. Control is a figment of our imagination. No one has control. We can however control how we deal with things. I'm numb right now but scared and really f'n sad. so I guess I'm not that numb!
I am not ready to lose Ben mentally or physically. :'(
It hasn't even been 2 years since he was first DX and we are back at it already, not a great sign. Not uncommon so I've heard though. This sucks!
Wil's bus just pulled up, we haven't told her yet...
Monday, May 7, 2012
During the battle
We always need support, at the begining of the battle, during the battle and at the end of the battle. After the battle. Always
There were many people in the beginning. Few during.
We fight every single day.
When you see us walking around pretending to live a "normal" existance we need you.
We need you now when every day is very unknown of what the night may bring, we need you.
If you could bring peace to some one would you?
We need you now.
Not when things are at it's worse not when it's overwith.
But now.
We need you now.
There were many people in the beginning. Few during.
We fight every single day.
When you see us walking around pretending to live a "normal" existance we need you.
We need you now when every day is very unknown of what the night may bring, we need you.
If you could bring peace to some one would you?
We need you now.
Not when things are at it's worse not when it's overwith.
But now.
We need you now.
Sunday, May 6, 2012
shitty weekend
I'm not even going to try to sugar coat this post so if you are offended I don't give a crap!
I've had a super shitty week. I'm stressed to the MAX
I'm tired of fighting with my ten year old and reteach her how to act and behave and to respect us every five seconds.
I'm failing on so many levels. I volunteer at school and girl scouts and so much, that I have burned myself out bad and today it was like wth have I been doing this for? Willow read her mother's day letter at girl scouts and it said something that hurt me so bad and she read it in front of everyone. I'm devastated.
I worked so hard for years to be a good mom. And now I'm failing even if I'm totally working overtime to be close to her I'm still failing. :( :( :( :( :(
Ben's MRI results are in the AM and I'm scared shitless. He hasn't been feeling 100% lately and I'm really so scared.
It isn't even being negative or having a bad attitude towards it all, I'm trying to prepare myself for bad news. cuz it's possible. It's not like that what's I expect or want, of course...but I'm so scared this time. More so than any other time. That's all I've been thinking about...people complaining and whining and all I can think is that my husband's brain cancer has gotten worse, grown, moved to another place in his brain...I'm so scared. I ccan't control it, worrying doesn't help, but I have zero coping right now, I'm full fledged freaking out and every little thing is setting me off. I'm ready to walk away from all that I am doing. I'm done. I'm sick to my stomach. I'm ready to not be involved in anything. I'm ready to walk away and be over it all. I don't want to have anything to do with cancer period. I don't care anymore I have no passion...this is my life not jsut something I've been through, we live it every single damn day. I need a break!!!
.
I've had a super shitty week. I'm stressed to the MAX
I'm tired of fighting with my ten year old and reteach her how to act and behave and to respect us every five seconds.
I'm failing on so many levels. I volunteer at school and girl scouts and so much, that I have burned myself out bad and today it was like wth have I been doing this for? Willow read her mother's day letter at girl scouts and it said something that hurt me so bad and she read it in front of everyone. I'm devastated.
I worked so hard for years to be a good mom. And now I'm failing even if I'm totally working overtime to be close to her I'm still failing. :( :( :( :( :(
Ben's MRI results are in the AM and I'm scared shitless. He hasn't been feeling 100% lately and I'm really so scared.
It isn't even being negative or having a bad attitude towards it all, I'm trying to prepare myself for bad news. cuz it's possible. It's not like that what's I expect or want, of course...but I'm so scared this time. More so than any other time. That's all I've been thinking about...people complaining and whining and all I can think is that my husband's brain cancer has gotten worse, grown, moved to another place in his brain...I'm so scared. I ccan't control it, worrying doesn't help, but I have zero coping right now, I'm full fledged freaking out and every little thing is setting me off. I'm ready to walk away from all that I am doing. I'm done. I'm sick to my stomach. I'm ready to not be involved in anything. I'm ready to walk away and be over it all. I don't want to have anything to do with cancer period. I don't care anymore I have no passion...this is my life not jsut something I've been through, we live it every single damn day. I need a break!!!
.
Thursday, May 3, 2012
Sometimes even I forget...
Sometimes even I forget! haha soo it's like this. Life has it's important moments. I'm 33 and I've seen a lot in all those years. I feel a lot older might I add. :) Some things matter some do not. Some things I need to let roll, some I do not.
I think I want to know what I stand for and what I don't stand for.
Deep down I do but I have this reacting problem then that sends me straight into depression than I shut down completely and go into self loathing self pity plain pathetic city!
I had a crash yesterday but to realize something I had been working on so hard might not be worth it made me super sad. To find out this world is so small and wherever you go your "problems" will never go away for real. Or it's like this what if we decide what our problems were, what they consisted of what is really a problem and what isn't to me? My opinion. Let the rest go because it doesn't have any reflection on me and my life. I have to still move forward, raise my daughter, and fullfill my committmenets to my husband, Ben. For myself that is what I have to do.
Now other things like volunteering, I'm making friendships dealing with people I wouldn't normally spend time with on all levels. It's good for me. I've been checked out of any kind of social life for a very very very my whole life. Sometimes I regret stepping into it so loudly though. I like a little quiet and when no one knows me. Well before Ben got sick that was possible NOW not so much.
As much as we want to not think about it, the second Ben was told he had cancer, our entire world shifted and changed forever. It will never be the same, it won't even be close. Problem with that is I liked how things were. I think. Yet again now I can choose for that to be a problem or not. I can decide to like our new life as completely strange and very wonderland it is forever now. Not just for right now but forever.
That's what so many people don't get you don't just get cancer/get treatment/get better/life is okay again. It's not like that for us. At all. And I think we are pretty positive or at least very good at hiding most feelings towards it all...on the outside anyway.
So a lesson learned this week or reminded me things are usually exactly how you percieved them to be or nothing at all like you thought they would turn out. No surprise there volunteering for me I don't know where that road is going. I am looking for something I may never find. That is me so much. Never satisfied, ever what is that about?
I love writing on my blog though, even if no one else is reading it. I'm happy to be able to let go, I can't on fb really cuz I feel judged. Here no one knows I exist kinda like real life. :)
I think I want to know what I stand for and what I don't stand for.
Deep down I do but I have this reacting problem then that sends me straight into depression than I shut down completely and go into self loathing self pity plain pathetic city!
I had a crash yesterday but to realize something I had been working on so hard might not be worth it made me super sad. To find out this world is so small and wherever you go your "problems" will never go away for real. Or it's like this what if we decide what our problems were, what they consisted of what is really a problem and what isn't to me? My opinion. Let the rest go because it doesn't have any reflection on me and my life. I have to still move forward, raise my daughter, and fullfill my committmenets to my husband, Ben. For myself that is what I have to do.
Now other things like volunteering, I'm making friendships dealing with people I wouldn't normally spend time with on all levels. It's good for me. I've been checked out of any kind of social life for a very very very my whole life. Sometimes I regret stepping into it so loudly though. I like a little quiet and when no one knows me. Well before Ben got sick that was possible NOW not so much.
As much as we want to not think about it, the second Ben was told he had cancer, our entire world shifted and changed forever. It will never be the same, it won't even be close. Problem with that is I liked how things were. I think. Yet again now I can choose for that to be a problem or not. I can decide to like our new life as completely strange and very wonderland it is forever now. Not just for right now but forever.
That's what so many people don't get you don't just get cancer/get treatment/get better/life is okay again. It's not like that for us. At all. And I think we are pretty positive or at least very good at hiding most feelings towards it all...on the outside anyway.
So a lesson learned this week or reminded me things are usually exactly how you percieved them to be or nothing at all like you thought they would turn out. No surprise there volunteering for me I don't know where that road is going. I am looking for something I may never find. That is me so much. Never satisfied, ever what is that about?
I love writing on my blog though, even if no one else is reading it. I'm happy to be able to let go, I can't on fb really cuz I feel judged. Here no one knows I exist kinda like real life. :)
Wednesday, May 2, 2012
I ask myself a few ?s
Days like these when I feel the way I do, I have to ask myself a few questions. ONE am I stressed out? TWO am I overwhelmed? THREE am I PMSing? I've been working so hard and feeling passionate about this fundraiser for the american cancer society. Today I'm questioning it all.
I know that what I am doing is a good thing, but do I want to support a company that won't support you unless you bring in a certain amount of $$$? Relay for life. I've read all these books I'm asking people to jump on board, feeling so proud of our relay site, sharing it all the time, people are using it a bit. Today I had one meeting with our rep. Well his job is to support local relays. While I wasn't hearing back from him emails/phone call messages, I would be on fb and decide I'm going to research a bit and find out what I can about who else might be able to help us. Well turns out when I did this he got called out by his boss, well I don't know. But he was very upset about it. He ended up bringing us things he could gather because he said we are not recognized as a relay, our site isn't real, we aren't a real mini relay, we are attached to a bigger city one...because we don't bring in $25,000. So what they say they stand for is an f'n joke. This guy was mad at me, cuz he went out of his way to help us bringing us relay gear, yes that is what we wanted, until he started telling us this shit. Now I'm reconsidering this entire thing, which means everything I've been spending my time on is a waste of f'n time. Why would we support a business cuz ACS is a business when they wont' support us, meaning letting us borrow items to decorate OR giving out items to survivors. Makes me sick. He acted like he was doing us a favor. And how dare I ask for help from anyone else, cuz he got in trouble? I will never apologize for trying to do my job the best way I know how. I kept getting dead ends NOW I know who to directly go to. haha suckers. lol j/k
I dont know what the hell I'm doing. This is the 2nd fundraiser I've been dissapointed in, I need to reach out a bit. :( :( :(
volunteering isn't as great as I hoped
I have to figure out what I stand for and what I want to spend my time on
?s
I know that what I am doing is a good thing, but do I want to support a company that won't support you unless you bring in a certain amount of $$$? Relay for life. I've read all these books I'm asking people to jump on board, feeling so proud of our relay site, sharing it all the time, people are using it a bit. Today I had one meeting with our rep. Well his job is to support local relays. While I wasn't hearing back from him emails/phone call messages, I would be on fb and decide I'm going to research a bit and find out what I can about who else might be able to help us. Well turns out when I did this he got called out by his boss, well I don't know. But he was very upset about it. He ended up bringing us things he could gather because he said we are not recognized as a relay, our site isn't real, we aren't a real mini relay, we are attached to a bigger city one...because we don't bring in $25,000. So what they say they stand for is an f'n joke. This guy was mad at me, cuz he went out of his way to help us bringing us relay gear, yes that is what we wanted, until he started telling us this shit. Now I'm reconsidering this entire thing, which means everything I've been spending my time on is a waste of f'n time. Why would we support a business cuz ACS is a business when they wont' support us, meaning letting us borrow items to decorate OR giving out items to survivors. Makes me sick. He acted like he was doing us a favor. And how dare I ask for help from anyone else, cuz he got in trouble? I will never apologize for trying to do my job the best way I know how. I kept getting dead ends NOW I know who to directly go to. haha suckers. lol j/k
I dont know what the hell I'm doing. This is the 2nd fundraiser I've been dissapointed in, I need to reach out a bit. :( :( :(
volunteering isn't as great as I hoped
I have to figure out what I stand for and what I want to spend my time on
?s
Saturday, April 28, 2012
U know that awkward moment...
Yep, I sure do!
Do you ever have those awkward moments of waking up from the dog whining, take her out, get online and start posting non stop on fb about how May is brain cancer awareness month and how important it is for you to support this cause even if today it doesn't apply to you exactly, for all those fighting this disease, you don't walk into walmart or any other store and buy gray products for brain cancer research WHY THE HELL NOT btw? It sucks! Gray and brains are scary who would support that, not people into getting rich off of cancer nope not them people! And then the awkward moment comes why I've realize 2 hours have passes by, and now onto looking at people's profiles that use to be in my life or in my family and they aren't anymore for no reason NO reason. No reason at all. I used to have 2 half sisters and let me tell you it kills me that I don't know them anymore. It f'n kills me. I don't understand it. They are ten years younger than me and when our dad got well stopped hanging out they went with him although they live a million miles away in OR they don't speak to me at all or my daughter even when Ben got DX with brain cancer did they not speak one word. So how could they be so cold to me? I was there for them when they were little and their mom left them all. I helped my dad so much. They pretty much suck ass! How they can just not talk to me. I need my family. Well I guess I've lived these past I don't know 3-4 years or more without them so I guess I don't need them. It would be nice if they cared to see how I was doing so I could see how they were doing, I've tried reaching out only to be burned, ignored, etc. It's not fair, put it on the list of why I wonder I was even born sometimes. Why am I here?
The family I've dreamt of my whole life and dwindled down so much. Maybe it is my fault I don't know. I am very passionate I wear my heart on my sleeve I have tons more cliche' sayings to justify my behavior hang on! But seriously I try to be me, honest, and open and let's work it out and let's get it all out, like it or not this is me. I love them for who they are whether they are close to my dad who I do not like very much...or not. I don't judge them for kissing his ass...for money. OH did I say that? ahhaha it's true :)I don't need him, I have never had him, for maybe 3 years out of 33 he was a good dad, that just isn't enough consistancy for me. He treated us all so different. I was his past mistake, a reminder of all that is evil in the world,my mother, which they were divorced when I was 3 so it's not like he took time to know her much, and he was a drunk...so yeah blame my mom! sigh, god I guess I have some issues to work out.
So the awkward moment is when you are looking at pictures of people you used to be related to.
Oh and May is Brain Cancer Awareness Month
May 1st is Ben's MRI
May 16th is Ben's 34th bday
Thursday, April 26, 2012
MRI week, thinking positive thoughts
MRI is coming up on May 1st. Feeling the stress taking over...Ben's mom is worried enough for all of us, wish she wasn't! Positive thoughts. If you don't have cancer in your life, MRI week is a bit nerwracking.
He will get an MRI which takes around 45 minutes long, he will get dye put into him to show any cancer in his brain, it lights up.
Then we have to wait days for another appt with the Dr. to find out the results, during that time, his film will be looked at by Drs at a tumor board and they will all put in their input.
If things are stable meaning no changes, the cancer is still there but nothing changed GOOOD! We can breathe until next time. This happens to be his first one 6 months out, so it's been longer and it is scary.
We have no idea what to expect. If it does come back if it's in the same spot or elsewhere, bigger, etc. He has been having headaches. And vomited that one night with a bad mirgraine. We didn't do anything about it because the flu is going around! So hopefully it's nothing!
Thinking positive thoughts.
If recurrance happens, that could mean surgery, chemo...he has already had surgery and radiation...this is common and it will happen at one point in time or more. It's if his body can handle it all that's what it entails.
I hate brain cancer!
He will get an MRI which takes around 45 minutes long, he will get dye put into him to show any cancer in his brain, it lights up.
Then we have to wait days for another appt with the Dr. to find out the results, during that time, his film will be looked at by Drs at a tumor board and they will all put in their input.
If things are stable meaning no changes, the cancer is still there but nothing changed GOOOD! We can breathe until next time. This happens to be his first one 6 months out, so it's been longer and it is scary.
We have no idea what to expect. If it does come back if it's in the same spot or elsewhere, bigger, etc. He has been having headaches. And vomited that one night with a bad mirgraine. We didn't do anything about it because the flu is going around! So hopefully it's nothing!
Thinking positive thoughts.
If recurrance happens, that could mean surgery, chemo...he has already had surgery and radiation...this is common and it will happen at one point in time or more. It's if his body can handle it all that's what it entails.
I hate brain cancer!
Wednesday, April 25, 2012
Lesson #1
I've asked myself 100 x what have I learned since Ben was DX with cancer. So today I thought I'd compile a list of sorts to remind myself when I need to.
Lesson #1
I've learned that when someone is in need I should help them in anyway I can small or large.
Right now besides helping with a local fundraiser, I'm gathering items for a sunshine box, for a friend of my daughter's that dad was just DX(a box of small presents that she can open one every day), sending a cute/funny card to a friend who just got DX with melanoma and I feel so helpless because she's across the US, so a good card and a message of anytime you need to talk I'm here for you, and today I read a friend's caring page, her husband coming home from the hospital after his 2nd brain surgery and now is paralyzed they need help with remodeling their doorways, so I wrote a letter and sent it to people in her community that might be able to help them. I have to help. I feel so strongly about this. This is what I was meant to do, ease people in need and going through hard times. I especially can relate to those dealing with cancer, although brain cancer is it's own demon among all of them, there are similar things we all go through.
My point is, whatever you can do in your means to help someone in need do it. It's rewarding for all!
Lesson #1
I've learned that when someone is in need I should help them in anyway I can small or large.
Right now besides helping with a local fundraiser, I'm gathering items for a sunshine box, for a friend of my daughter's that dad was just DX(a box of small presents that she can open one every day), sending a cute/funny card to a friend who just got DX with melanoma and I feel so helpless because she's across the US, so a good card and a message of anytime you need to talk I'm here for you, and today I read a friend's caring page, her husband coming home from the hospital after his 2nd brain surgery and now is paralyzed they need help with remodeling their doorways, so I wrote a letter and sent it to people in her community that might be able to help them. I have to help. I feel so strongly about this. This is what I was meant to do, ease people in need and going through hard times. I especially can relate to those dealing with cancer, although brain cancer is it's own demon among all of them, there are similar things we all go through.
My point is, whatever you can do in your means to help someone in need do it. It's rewarding for all!
Tuesday, April 24, 2012
Sad but true
one thing I hate is when bag things happen to people and people totally unrelated to the problem acts like they are going through something far more difficult than that actual person with the problem. So let's be clear that's not what this is.
In the past week, working relentlessly on Hopedale Helps, this American Cancer Society fundraiser, constantly thinking about cancer. Needing a break. Ben's MRI in 7 days. A girl at my daughter's school, her dad just got DX with colon cancer. Another family ripped apart by cancer. Then lastnight I got an email from a good friend in another state that she has Melanoma and has to get surgery. I was wordless which isn't like me. I said I'm so sorry I wish I could really be there for her. I don't have many details.
This is making me so very sad. It makes me scared for all of us. Why some people still walking around still haven't come into contact with cancer, well not yet, blows my mind. I know so many people who have died or who have had it or still have it..and then there's Ben. We live it. I know what it can do.
So I feel like shit cuz I don't have the "right" thing to say to my friend. Do I send a card? Do I call her? What do I do? Not doing anything is not ok. We know how that is. Try to make her smile and stay positive, on my list! She's younger than me early 30s. It's so not fair. Life.
In the past week, working relentlessly on Hopedale Helps, this American Cancer Society fundraiser, constantly thinking about cancer. Needing a break. Ben's MRI in 7 days. A girl at my daughter's school, her dad just got DX with colon cancer. Another family ripped apart by cancer. Then lastnight I got an email from a good friend in another state that she has Melanoma and has to get surgery. I was wordless which isn't like me. I said I'm so sorry I wish I could really be there for her. I don't have many details.
This is making me so very sad. It makes me scared for all of us. Why some people still walking around still haven't come into contact with cancer, well not yet, blows my mind. I know so many people who have died or who have had it or still have it..and then there's Ben. We live it. I know what it can do.
So I feel like shit cuz I don't have the "right" thing to say to my friend. Do I send a card? Do I call her? What do I do? Not doing anything is not ok. We know how that is. Try to make her smile and stay positive, on my list! She's younger than me early 30s. It's so not fair. Life.
Sunday, April 22, 2012
I remember this day
I remember this day...we were getting ready for our daily trip to radiation...aww Ben why, why do you have to have brain cancer? What life lesson are we learning? What does it all mean? Why couldn't just this one thing our marriage our family be hurt free? You think when you are little and so much is out of your control that when you grow up and if you are lucky enough to find someone to love and for them to love you back that maybe just maybe we can be happy, it didn't matter that we went through horribly bad times or so we thought, it's been a non ending pile of crap with a few good times smattered here and there. But we still go on like this huge black cloud isn't hanging above our heads. Cuz we have to.
I need a cancer free day, in fact I declare we all need one cancer free day. What does that consist of? Mostly NO C words or talk or anything related to thereof. Please One cancer free day, what would that be like?
So many people I know are being ripped apart from cancer, particularly brain cancer. It affects people in so many different ways. A marriage, a family, friendships, all of it can be lost due to so much. We can't stop it, we can't control it, so what do we do? We are human. So your husband isn't as nice as he once was or he is so short and acts like he doesn't want to be around your kids or shuts off completely from your life and what is once was or he wants to be normal again so bad can't understand why you can't just forget it all and move on or scared of dying and leaving you alone or sad because he sees how sad you are or physically sick because of the 11 pills you have to take or so tired because maybe your brain is fighting so hard it can't keep up anymore or the pills side effects are making you tired or the radiation that they did to your brain is still affecting everything or that damn cancer is growing and taking over...we are still human. I'm scared and angry and sad and confused and lost and it's abundantly clear that I will not have any answers anytime soon. FRIG! That's life. Bad things happen bad things happen to good people the good die young That's life.
Why Ben? That will be the name of my book! Why Ben? Why not? I guess lots of people have struggled through cancer, a friend of a friend and their husband this and that, horrible surgeries, horrible pain fear, denial...I've known too much...like most treatment hmmm treatment you mean poison that kills cancer, kills people too. :/ It's real life. People hope for this to be that magic to take away all the pain. But it's all luck...will your body take it or reject it? How long will your body hold out, if it does hold out what will you be put through or your family and the ones that love you?
How much will Ben go through? How long will he suffer? How long will he be scared? How long? Will he lose his mind? Or will he start having seizures again, can I go through that again? I was so scared. Watching him have seizures was either 30 seconds or shorter or longer and everytime I thought will he come back to me? Will he die? Is this it? Is this it? Is this it? Why Ben? Why me? Why Willow? Why Ben's mom? Why us? Someone please tell me! You can be perfect a perfect human being, healthy, be a good person, be honest and loyal, be strong and mindful, you can wake up with cancer. It can happen to you too. It could happen and probably will to me? Will I get sick too? What would happen if Willow's parents die before she's ready to say goodbye to them? Who will she have? Who will take care and watch over her? I can't get sick, I can't. I still am so depressed to get more healthy, full well knowing being healthy isn''t going to stop cancer. It won't so why do I care? Cuz my heart or my mind might be gone too...sigh.
Like I said I need a cancer free day. No c word tomorrow moving onward and upward. Have to.
So much on my mind.
so much soooo much on my mind like for example...helping with this fundraiser is becoming something else and not sure I'm strong enough to go on with it for another year. Not sure I want to. I like it I want to do what I am doing but I'm exhausted thinking about it all the time. It makes it hard to not think about cancer everyday when you are raising money for it. I'm tired and I need a non cancer day. So I woke up and did a few things online some for this yes...and then I stayed away and literally slept most of the day. I needed and need a recharge also a break also to get away for awhile. Seriously. am buring myself out trying to keep my mind busy, "moving forward" HA
It's exhausting really. I went from being depressed and doing nothing all winter to fulfledged so busy I can't see straight. And right now I"m dizzy and not sure of my point of the point. :)
So I keep saying one day at a time one day at a time. I need to refocus and put some time into ME MYSELF and I again. focus on what I need to do for me. And us. So tomorrow I finally have an interview, completely NOT in the direction I want so what? It's work, could be just right considering it's 2 minutes up the road and they will hire me only available 15 hours a week....but will they make me miserable and stretch that out as much as possible? That's what I don't want! I know what I don't want more than I do know what I want hahha. Imagine that one.
I'm planning Ben's 34th western party, going well I might add. Thankfully his cousin is planning on helping with making a wooden jail scene so we can use it for a photo prop LOVE IT! I just want to invite everyone and have fun! I got me some boots! :) heehee got his invite done and we'll just have to decorate and make food and a guitar cake and cupcakes what else...lol
It is the end of the year for Willow's 4th grade THANK GOD!!!!! omg it's been one helluva year. I've helped more than I have ever helped at school...I am not sure how much I will do next year. Cuz I'll be in school and hopefully working so I want to give my all. :) I'm so tired of fighting with her. She stayed home a whole week sick, not sure what she had and had to have tests done...they were talking MONO but she's better now. So going back tomorrow...we had thrown around the idea of homeschool but I don't think we could do it, she's so mean sometimes. And then apologizes I get it I do being frustrated and unhappy and doing things you dont' want to do. So I'm the punching bag.
Onto my mother, she lost the lady she cared for so she needs a job and I was trying to help her and encourage her cuz I could see her getting negative and depressed. And then I became HER punching bag and when I couldn't take anymore we had a big fight, which used to be a normal thing but isn't so much anymore she's never going to be behind me or on my side, that's just how it is...so we aren't speaking this week I need a break!
Well off to cook dinner and be super woman :(
It's exhausting really. I went from being depressed and doing nothing all winter to fulfledged so busy I can't see straight. And right now I"m dizzy and not sure of my point of the point. :)
So I keep saying one day at a time one day at a time. I need to refocus and put some time into ME MYSELF and I again. focus on what I need to do for me. And us. So tomorrow I finally have an interview, completely NOT in the direction I want so what? It's work, could be just right considering it's 2 minutes up the road and they will hire me only available 15 hours a week....but will they make me miserable and stretch that out as much as possible? That's what I don't want! I know what I don't want more than I do know what I want hahha. Imagine that one.
I'm planning Ben's 34th western party, going well I might add. Thankfully his cousin is planning on helping with making a wooden jail scene so we can use it for a photo prop LOVE IT! I just want to invite everyone and have fun! I got me some boots! :) heehee got his invite done and we'll just have to decorate and make food and a guitar cake and cupcakes what else...lol
It is the end of the year for Willow's 4th grade THANK GOD!!!!! omg it's been one helluva year. I've helped more than I have ever helped at school...I am not sure how much I will do next year. Cuz I'll be in school and hopefully working so I want to give my all. :) I'm so tired of fighting with her. She stayed home a whole week sick, not sure what she had and had to have tests done...they were talking MONO but she's better now. So going back tomorrow...we had thrown around the idea of homeschool but I don't think we could do it, she's so mean sometimes. And then apologizes I get it I do being frustrated and unhappy and doing things you dont' want to do. So I'm the punching bag.
Onto my mother, she lost the lady she cared for so she needs a job and I was trying to help her and encourage her cuz I could see her getting negative and depressed. And then I became HER punching bag and when I couldn't take anymore we had a big fight, which used to be a normal thing but isn't so much anymore she's never going to be behind me or on my side, that's just how it is...so we aren't speaking this week I need a break!
Well off to cook dinner and be super woman :(
Monday, April 16, 2012
Just Dandy
I'm just too dandy for words. haha
Less emotional this week. So far it's Monday at 5pm, dinner done, I'm exhausted. So tired!
How can a 33 year old be so tired, I've always been like this, like I don't have "normal" energy levels.
So I've been busy planning. Got my husband, Ben's invite done for his 34th bday, wild west theme! It took me two days and I still am not 100% on it! haha I did however teach myself how to download, legally fonts: http://www.fontspace.com/search/?q=scary&p=3 It is totally legal. Download and Install. I got some great "cowboy" fonts for the invite! I wish I could get paid to do this kinda thing! :) So we are going with Wild West theme, wanted signs, outlaws, red bandanas etc. More will come soon!
I with the help of a friend designed a banner for Hopedale Helps the cancer fundraiser I help with, I think it will be awesome. We are doing a white background with inspirational words in the same colors as the cancer awareness ribbons and our logo on top of that!
Less emotional this week. So far it's Monday at 5pm, dinner done, I'm exhausted. So tired!
How can a 33 year old be so tired, I've always been like this, like I don't have "normal" energy levels.
So I've been busy planning. Got my husband, Ben's invite done for his 34th bday, wild west theme! It took me two days and I still am not 100% on it! haha I did however teach myself how to download, legally fonts: http://www.fontspace.com/search/?q=scary&p=3 It is totally legal. Download and Install. I got some great "cowboy" fonts for the invite! I wish I could get paid to do this kinda thing! :) So we are going with Wild West theme, wanted signs, outlaws, red bandanas etc. More will come soon!
I with the help of a friend designed a banner for Hopedale Helps the cancer fundraiser I help with, I think it will be awesome. We are doing a white background with inspirational words in the same colors as the cancer awareness ribbons and our logo on top of that!
Hopedale Helps Logo, myself and Paul LaBelle designed.
So let's see what else I have been working on the HH agenda. Thinking of who might EMCEE, I'm working on writing a script as well. We are a mini relay for life. More info: www.relayforlife.org/minihopedalehelpsil It's the 3rd year and I've been working really hard at organizing and planning. I hope to create a more fluent, meaningful atmosphere. I can take this responsibility on, I just don't know how long I'll want to do it for. I'd like to stretch things out a bit more, I hope people will want to take more on next year. Alot of people work full time I don't. Alot of people have small kids I don't. So it's easily on me. Which I took alot on myself. Feeling as though if I'm going to join in I better do whatever is in my power to help out. And I helped last year and I was so bummed that there weren't any ceremonies as advertised, my husband's name wasn't even said as a survivor :( and they rushed to end the whole event so people missed the luminaria names read. I am determined to change things!!! And I hope to be proud of putting my name on this years event. :)
Anyways. Willow is sickie, had to take her to the Dr. today. Went to town twice $$$ Went to Hobby Lobby, I could spend in there. I bought 4 square canvases ready to hang. And blue, green, and brown paint. I also, spurlged on some cheap a$$ paint brushes. Me and Willow are planning on painting 4 owls 2 each. I'm super excited. I've been obsessed with owls for years now and I'm plucking them into every single room...I took out all Americana, it's cute just NOT me. I've gotten a mismatched Frenchish countryish kitchen. But I want to paint that too. My livingroom is yellow and I want to add in natural, earthy tones of green and blue and brown. Like my new room. :) I love it. I feel at peace in there. So I got some plaid curtains from http://www.ltdcommodities.com/ for $17 a pair...black/yellow/beige plaid. So I can do alot with those. When my husband got ill someone made us a wall quilt with our photos on it, I need to add to it, it's too plain. so I'm out and about looking for decals for it, owls anyone? :) I would love to be able to make photo ledges. They are soo high it's nuts! Like $30 for one! I have sooo many photos and I want to take them off the wall and put them on a shelf so I don't have 100 holes and so I can switch them up more often. :) It is on my list. I have it in me to change often and to create a homey environment where we all feel comfortable.
:)
It makes me happy and it is the small things that count!
So I'm volunteering at school 4th grade, working on Hopedale Helps Rummage & Bake Sale, working on advertising, working on donations, working on agendas and scripts, planning Girl Scout end of the year badge finale' and hike in Starved Rock, IL, cannot wait for that! And Ben's 34th bday, getting it all done. I love to plan it keeps my mind so busy...off of things like follow up MRIs, Ben has one on May 1st, so how many days away is that? Then one week after that we will get the results..our life could change forever again. :( Focusing on all these events and planning is a good thing.
And on top of that looking for a part time job & ready to start college part time in the fall for business essentials. I have alot to be excited for! Oh and vacation in WI Dells in June! :) :) :)
Live can be good sometimes have to find those upsides!!! Yes even us with my husband being on disability after waking up one morning with brain cancer, our 10 year old daughter started puberty bwhahahahahaha, and me losing it one day at a time :P
Tuesday, April 10, 2012
The Lucky Ones
Long Long day! ahh
Reading about a friend on fb's husband going through his 2nd brain surgery is killing me. It's killing me. How can I not think of my husband in the other room and when will we have to go through that? Or will we? GEEEZ!!! How?! I want to talk to Ben and I want to know where his head is. I am so scared.
On a side note: I went to a love and logic thing at school tonight, common sense advice on how to talk to your kids. When it comes down to it, it is up to me to change. To keep my temper in check and not enable her. One day she'll have to live her life and I can't do it for her. LIFE! I'm going to work on this!
So Then I went to a PTO meeting, while they are good people and I know they mean well. I just can't get behind raising money for a new playground. It isn't important. How can I sit there and feel like AR goals and this and that are sooo important. When my daughter thinks about losing her dad daily, reading books for points isn't on her list. She loves to read, so I'm not worried, she's really smart and does well when she applies herself. I encourage her to do her best, but in the end it is up to her to do what she will. I don't know. Shaking my head. They take themselves so seriously and it's not that important period. ha It makes me laugh and then my mind froze for the rest of the meeting when someone mentioned May 1st. You know when your mind starts racing thinking why is that date important? OH yeah...Ben's getting an MRI on May 1st. Geez. How can I think of PTO crap after that? I can't. I didn't. sigh
It's a rough f'n week for my mind. I think the things going on around me or online to people I care about is really getting to me. It makes it harder to be in denial over our own problems. I do think some people don't have these kind of problems...lucky ducks! They are the lucky ones.
Reading about a friend on fb's husband going through his 2nd brain surgery is killing me. It's killing me. How can I not think of my husband in the other room and when will we have to go through that? Or will we? GEEEZ!!! How?! I want to talk to Ben and I want to know where his head is. I am so scared.
On a side note: I went to a love and logic thing at school tonight, common sense advice on how to talk to your kids. When it comes down to it, it is up to me to change. To keep my temper in check and not enable her. One day she'll have to live her life and I can't do it for her. LIFE! I'm going to work on this!
So Then I went to a PTO meeting, while they are good people and I know they mean well. I just can't get behind raising money for a new playground. It isn't important. How can I sit there and feel like AR goals and this and that are sooo important. When my daughter thinks about losing her dad daily, reading books for points isn't on her list. She loves to read, so I'm not worried, she's really smart and does well when she applies herself. I encourage her to do her best, but in the end it is up to her to do what she will. I don't know. Shaking my head. They take themselves so seriously and it's not that important period. ha It makes me laugh and then my mind froze for the rest of the meeting when someone mentioned May 1st. You know when your mind starts racing thinking why is that date important? OH yeah...Ben's getting an MRI on May 1st. Geez. How can I think of PTO crap after that? I can't. I didn't. sigh
It's a rough f'n week for my mind. I think the things going on around me or online to people I care about is really getting to me. It makes it harder to be in denial over our own problems. I do think some people don't have these kind of problems...lucky ducks! They are the lucky ones.
The more I vent the more I am sad. THis is not normal for me. I normally feel relieved. The more I watched how cancer destroys peoples lives the more sad I am. What is Ben feeling? He doesn't tell me. He acts like everything is ok. I know me being sad is kiling him, which makes me feel tremendous guilt! I want to kick my own ass. Have I become this pitymecuzmy husband has cancer person? I am not sure if I feel sorry for myself or I'm just so sad becauseof our situation. Young adult survivors talk about moving on alot. That they do have hope after losing it. What does it mean for Ben? We have a bc friend in the hospital now with her husband who just came out of surgery and he might now be paralyzed, hopefully not but as of lastnight he couldn't feel his left side. With Ben after surgery that could have happened to him but it didn't. Brain cancer. sigh...if you haven't been in it why would you know anything about it. We are in it and still don't know alot. You know just enough, the rest is unknown and scary. It's all scary. I love Ben and I hate he is going through this. why him? He's such a good person he's so good, such a big heart. Evil people walk around doing evil and being hateful and hurtful and hurting people...and they will live forever. I guess that's what I'm most sad about, waiting for that othe shoe to drop, preparing for the worst. What would be worse, Ben losing his mind, or becoming totally disabled or him dying and I would lose him forever. Those are my fears. Watching him suffer and not being able to stop it. It's the worst feeling in the world, it's the scariest feeling I've ever felt. To feel like Ben will just die in front of me, or when he sleeps in that he isn't sleeping at all. That happens whether I chose to think positivly or not. It just happens. I hear a sound and am worried he is going to start having seizures again. He loses his temper and I am reminded at how much he's change and how he never was mean or yelling. Especially at our daughter. He feels badly too, but he sometimes feels like he cannot control his anger. That's his emotions numb or anger. :/ Very rarely do I witness happiness, or anything else. He has been singing alot lately, not like Ben...he loves music we both do one thing we have in common. He's been listening to the old stations and made the point that happy music makes him feel happy, so staying away from Blood for Blood hate the world music is helpful. I thought that was a great thought to have! :) I think him hearing how people move on with cancer or after cancer DX/treatment I think it would do him some good. I'm checking out something online now. He's almost old at 33 as a young adult survivor, we don't fit in much of anywhere. :/
Life will never be the same, and I agree with Ben I have to start accepting it. I have to. :'(
Life will never be the same, and I agree with Ben I have to start accepting it. I have to. :'(
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