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

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!

MOM VS. DAUGHTER

PLEASE someone explain to me how a mother can be so damn mean, insecure, crazy all of the above?

I have had not a great relationship with my mother in 33 years.  Right now well as of a couple weeks ago, we were at this state of mind like we don't ruffle feathers meaning we don't tell each other much and don't spend much time together, alot of me listening to her on the phone.  She has helped us out yes, but not to any large extent.

So presently she lost her job/meaning her lady passed away. She is a caregiver. Things I know, she has another part time person, she need insurance, she has enough money for 3 months her words not mine.  So I'm like ok, I've looked online and tried telling her about jobs. I get it she's 60, she is worried and scared. So what does she do, yells and screams at me and tells me I'm losing it.  WTF?!!!  I haven't talked to her since last week since our last fight on the phone mind you she lives 30 minutes away and that's not enough!  So I try calling her I have time I'll look online.  And like always we have the exact same conversation. I'm like why are you getting pissed off and yelling at me? I'm trying to encourage her or give her ideas on how to help herself...like cancel cable slow the smoking that is KILLING YOU, I didn't say that but ya know what I mean.  She freaks out on me and tells me I'm treating her like she's stupid. I'm like I am encouraging you, I know you are smart I'm just trying to help. WHY? She is so damn mean, and then screams at me that I'm yelling at her, and I do start screaming what is anyone else doing for you? I'm trying to help you, unlike my brother!!!  He's too busy helping everyone else to see if his mom could use his help!  FRIG!!!  So I say / yell I don't want to talk to you until you can treat me nicely, I'm done!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 

She told my daughter last weekend that Oh well I'm not going to let your mom keep you from me again. And my daughter who is ten, says what do you mean again? So I say to her, well your Grandma shouldn't be talking to you about our business, but what happened was, I did not keep her from her.  She was a drunk, drug addict who was dating a crackhead for all I know she was doing it as well...I had helped her while being drug through hell a nd I couldn't do it anymore to protect myself and family I stopped all contact with her.  Which wasn't hard cuz she wasn't trying to contact us.  :/  And why the hell would she bring this up to my daughter? She's an asshole. She's selfish.  My mother has never been a mother to me.  Yes I had a house and clothes and food.  So I guess as far as the law goes she was a mother, but anything else HA.  She's put me through so much, between growing up with alcholism and fighting and abuse...I'm a product of my environment.  I knew when I grew up what kind of mom I would be and it would be the complete opposite of her.

So recently I took the thinking of I'll take a small part of a relationship with her whatever, I won't ruffle feathers and we will get along at whatever cost.  Cuz she is my momand my only family.  If you hurt me you are cut out, that's just how it is, after years of both my parents not caring if I lived or died...I've built up my wall and coped as well as I could. 

Now, we won't talk.  I'm done. I have to be stroong and keep my shit together for my husband and family which she seems to forget that we are struggling to survive I get being scared and not knowing what to do I GET IT!  Ben's MRI is next week, she doesn't even know that and if she did would somehow make it about her!  She is nuts!  She doesn't and won't ever support me on anything I do....she doesn't know about anything I am involved in or come out and support me or my daughter.  She did for a bit but quit.  And my brother thinks that she does for her, and not his kids. I laughed and told him no she doesn't but I've accepted it! It still pisses me off cuz she makes Willow sad but I tell her that's how it is...tell her how it makes you feel but that probably won't do any good! 

SIGH! I need to take a walk!  :/ 

Today we get to go to see Willow in a spelling bee, overall I'm a proud mom and I know we will all be ok, just had to get all that out! 

THANKS FOR READING

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!

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. 

I remember this day

I remember this day like it was yesterday, probably Oct 2010 at some point...

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 :(

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!

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

Ben's 34th brainstorming

Ben's 34th is coming up, his mom and I will have a party for him at her house. So theme brainstorming commence.  I love a good party. I love planning.  I love a good theme. I feel like I've done it all, what I haven't done is wild west.  Ben is obsessed for guns nowadays. SOOO I think this would be so cute. I'm think a gun or wanted poster cake, bandana decor', "cowboy" food, horseshoes, wanted signs, shooting games, maybe have a small fire with bales of hay, bowl of sheriff star pins, cowboy/girl hats, bandandas, boots! 




Links to partyware that will go with my theme!  Check it out!  My favorite local store is Party City! They have it all from decor', favors, balloons, papergoods...all of it!

1) http://www.orientaltrading.com/party-themes-and-events/themes/western-a1-90000+1333-1-1.fltr
2) http://www.party411.com/PlanYourParty/Occasion/Birthday/AdultPlans/Western.aspx
3) http://www.partycheap.com/Western_Themed_Party_s/57.htm
4) http://www.birthdaydirect.com/rodeo-cowboy-party-supplies-c-1076_3340.html
5) http://www.partycity.com/search.do?query=western
6) http://www.buycostumes.com/browse/Party-Supplies/_/N-3n/Ntt-western/results1.aspx


so once I get going on it I'll post more pictures! I'm excited!

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.

Ups and downs

I've been having some severe ups and downs.  I just got home from helping out at school.  I forget why I started doing it, but I sometimes like it.  I'm so glad I only have ONE kid.  I help with vocab and for the most part the kids are smart.  But then theres the ones who are rude and non stop talking and talk about anything but what we are talking about and did I mention rude?!  They are at this weird stage at age ten/4th grade where they aren't teenagers but they aren't children, they are these little crazy bastards!  They talk about things that they have NO clue what they are talking about but they think they are getting away with something.  Ah my daughter has had such a rough year, wanting to be homeschooled.  Which we've talked bout for years.  If she was a little more mature and responsible I would do it.  I would need her to be very independent.  Which sometimes she can be but other times????  I'm getting ready to start school myself preparing for my unknown future...and hopefully will have a job soon.  So can I successfully homeschool her?  I'm sure I could and I would like it, I love thinking outside the box and she is just like me.  Now on the other hand my husband is at home 24/7, short temper, sleeps half the day, doesn't like her around much, so as much as I want her to do it, I don't think it'd be good for all 3 of us and that's what I have to think about.  She has one more year in elementary school then off to middle school...and that's when all 3 schools meet in one, so it'll be interesting.  And she can make some new friends.  That's my wish for her.  I hope she meets that ONE girl that gets her and they just click, that hasn't happened for her yet.  And she wants a good friend.  I get it.  I do.  She had so much going on this year and just hated school...mostly social.  But with seeing a counselor and she's doing better academically, so I think that hellps some.  So tonight I'm going to go back to the school for this program Love and Logic, about helping you deal with your child, how to talk, whatever, I'm like I could use all the help I can get!  Then it's a PTO meeting where at some point soon will be a new president, that would be GREAT!  ONe of Wil's teachers will be doing it, she's awesome. 

Well I need a nap! I'm so exhausted...here's to peaceful moments!

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.  :'(

Deep intuitions

O man today is an emotional day for me...hormones mixed with stressed out = crazy feeling.  I hate it!  I have been crying all day long.  Easter yesterday was a nice day.  We spent it with his mom my mom and my brother & family.  We don't talk much, but there wasn't any fighting either.  :)  No drama day was so great.  Today I've been thinking so much about Hopedale Helps this local cancer fundraiser I'm helping with.  And it just makes me think of Ben so much and moreso losing Ben.  I am genuinely scared.  It's always there but some days it creeps to the surface hardcorely and every song every thought every thing reminds me I could lose him sooner than I'd like.  People with cancer period one day they are okay the next they are gone.  POOF! Like they never existed.  As crazy as things have become, I don't want to lose him now.  I know life will go on, but what will I do without him, how will I handle everything with Willow?  Sad songs kill me!  I'm planning these ceremonies for HH and the poems and songs are killing me.  It's like relay so we are trying to create this meaningful time where people will feel support and like we care.  We know how you feel and this book I was reading said have a caregiver speak about who they lost.  ??? How do I just ask someone to speak about the single hardest thing in their life? And how would I deal with that?  As much as I want to be there for people dealing with this shit, I need help myself.  And I don't have anyone to talk to mostly.  I do talk but nothing deep deep down that I need to talk about.  So I live and walk and breathe and move on with all this shit on my shoulders, it never goes away and it won't ever.  If this stress stops it'll be new stress or he'll be gone stress...then where will I be?  I'm alone but if I lose him I will have lost my entire life.  Who will I be?  It's so difficult.  This isn't the way my life was supposed to go?  I want to say I'm glad I met him and he changed me so much and for the first time in my life he made me feel loved.  No one has ever loved someone like Ben loves me.  And I love him.  It's not perfect but some where we created this bond together and it's real and it's indifferent to everything.  It will go on with or without us.  I'm physically hurting thinking about him not being here.  I don't want to be negative but I have deep emotional connection with this man and I have some serious intuition and I feel like this will be ending soon...why do I feel this way?  It's not a choice, I feel this way for a reason though. 

Having a hard time today. Grieving someone who is in the other room.  It blows my mind.  I'm pissed off.  I'm so sad. 

Today is a new day

Honestly after waking up early and not getting sleep and then sleeping.  I've woken up again this morning with a new outlook on life.  Period.  I will stop whining and feeling sorry for myself at least for today and try to be nicer and more enjoyable to be around.  I love my husband and I have to do this for him for myself for my daughter.  Enough is enough.  I'm going to be real, real kind.


Time is so short.  I'm going to stop counting time and enjoy it.  I have to stop this behavior or I will  never forgive myself.  


I'm hoping for a great day.  focusing on getting them a little something for easter, that's fun, even though I swore I wasn't going to.  A little something will be nice and fun, and I'll make them feel special.  :)  I want to create something with peeps!

unraveling

Unraveling

I woke up TOO early again this morning. Nothing good comes from me losing sleep.  I began looking people up on fb.  Remember those easy times when you just drove around stalking people, now it's easier and cheaper online.  haha  so I look up people that don't exist in my life.  When we moved almost 3 years ago to this small town 30 minutes from everyone we know, there were a long list of reasons for that move.  I cannot believe how small the world is.  Let's just pretend that life doesn't suck and people stay away when they know they aren't wanted! hahaha I have no clue but I definitely feel like most of the time the forces of the world hate me, yes me specifically and don't want me around anymore or want me around but completely miserable.  I'm fighting every time I open my eyes to not want to shut them.  The only time I have peace is when I'm sleep!  That's why I like it so much. 

When I got done writing on here yesterday, I read this messege I had on here...I don't use this much so I was like oh wow yeah wonder how that girl is doing? So went to her blog to read her posts and she passed away last month.  :(  She was one of the first people I found with brain cancer I had read alot of her posts and blogs and followed her story a bit.  She had responded to me with such kindness and sure she'd talk about the hardest thing in her life with me...whatever whenever.  And now she's gone. 

Another girl I met through a local fundraiser passed away a few months ago, and sadly her friend that she talked to me about because he's the same age as Ben thought they might hit it off, is on hospice now. 

I'm reminded that brain cancer can take Ben whenever it wants to.  It doesn't matter what he does, eats, anything it will take him when it wants to.  We have NO control.  so I lost it a bit.  I cried to ben (GUILT)  I'm one of those people who make the cancer patient feel like he's responsible for my well being.  I just don't know who to talk to.  I can't cry and let go in front of anyone I know.  What will they think?  I am automatically judged, cuz they think they know what they would do if they were in my shoes.  Like appreciate time together while you have it.  Well I'm pissed that I have to worry about the time we have together. I never thought for one second I wouldn't grow old with Ben. We've talked about it since we met.  We've had so much shit thrown at us and we are still standing beaten and bruised but still here pushing through the days like giant obstacles. We are gladiators for sure!  ahahha

so I'm upset over a 100 different things right now.  :( and NO one to talk to about it. they'd think I was crazy. 

do those big families and supporters truly exist or is it just in the movies?  Like people that want to take the pain away for you.  Surround you and bug you and love you.  I don't feel it.  I have always fantasized about a family life.  big family, dinners, get togethers, always together, kids friends together, bff with your brother and sisters, your parents want to hang out and spend time with your kid, us having a huge family of our own...I wanted 5 kids, then 3, I would have taken 2...but I have one that I adore don't get me wrong.  She's awesome and now that Ben is sick, I can reflect a bit and think well one is better.  Only one kid has to hurt so much.  Only one kid has to see her dad die. 

:( 

Willow mentioned one time that she didn't want to turn Ten because her grandpa died when her dad wad ten.  That is truly some crazy shit right there.  Then she has me worried about it.  We've joked/been serious bout this family being cursed.  do you believe in curses?  Is it real? could be.  Why do some families struggle and fight and go through hell and others sail through life and not ever dealing with the hard stuff. I know it always isn't what it seems but seriously there are people out there that have no idea what pain is.  And suffering.  And just plain ol depression. 

I've known it my whole life.

Yesterday gone, tomorrow not here yet

I wish I could say that I get it, I appreciate my life.  Yesterday I miss my old life, today I hate my new life.  That's what I really meant to say.  I'm shitty at faking it as well.  I suck at it pretty bad. I'm always snapping and screaming, who is this person I've become?  I'm so unhappy and mad and angry and done done done.  YES for crap sake it could always be worse. But it is pretty shitty right now.  I'm exhausted with my positive mask.  It does me NO good to focus on the good cuz it's such a huge reminder of what I hate about life.  Do people normally think several times a week that they must of been a mistake?  I have no reason to be here.  I have no one.  No one really.  People say that I'm not alone, but I sure feel alone. I'm tired of putting myself out there only to feel so isolated and judged.  I have to force myself to not care.  That's exhausting in itself.  I am such an angry bitter human being.  Why?  WHY?  I get mad at my husband for normal wife/husband things he's always done that drive me nuts.  THEN comes the guilt how dare I, with him having cancer how dare I?  Than the guilt of letting the little things get to me.  For instance.  I got so mad this morning.  Willow our daughter wanted to go to yard sales.  I know we don't have the money, Ben wanted to go he had already lost his temper and went off on her, which upset me, cuz he acts like he hates his own daughter that btw he never spends time with ever, so it's not like me losing it because we've spent an entire day together and she's crabby and being mean to me.  It's she's a kid, loud, annoying sometimes, but he truly shows her how much he hates it all.  So I was pissed at that and didn't really want him to come because he's so crabby all the time.  (guilt)  So we go, well low and behold no one grabbed the paper so we didn't have an address.  I'm like reminded at how if I don't do things they don't happen. Tired of that as well.  If I don't take care of anything it just doesn't happen? WTH when did that become the truth.  THEN off I go driving around this small town, no signs but one.  But Ben couldn't get a good look at it so I drove back to the sign, he insisted on reading.  I'm like it doesn't matter what that signs says because we do not know where that st is!!!!!!  I was so mad!  So I drove off.  Then we stop at this park so the dog can get out of the car...not after a huge blowout because other things...like him expecting me to read his mind or to hear him mumbling.  It's crazy.  I'm exhausted!  And he's constantly telling me things, I feel llike he's talking down to me.  Which I know he's smart but come on, really? I'm not an idiot, give me some friggin credit.  He acts like what I don't do that. Umm yeah ya do!  sigh! guilt for being mad kicks in...If he's with us, he complains about how he feels or this and that.  But he goes out with his friends under way worse condtions..???  It's only us he can't stand to be with, and honestly people aren't lining up at the door to visit.  We live 30 minutes from everyone we know, and he hasn't made any new friends out here.  But I can count on one hand how many visits he gets in a month under a few.  But he doesn't want anything to do with me.  Is it because I'm miserable?  Am I a miserable person?  I try soooo hard not to be but I bust at the seams sometimes and it's on.  I try not to fight, but my temper shoots through the roof and I just yell and scream and cuss.  Somedays I just want to get a baseball bat and just hit the shit out of something. For real.  I think about it all the time.  Last year I was put on BP medicine after having severe migraines and vertigo.  I think Ben hoped I had brain cancer too so he wasn't alone.  I was scared but the pills have helped, but I know some days my BP is so far gone!  It reminds me of my mother who I lived my entire life getting screamed at and taking it all. I'm now that for my daughter. Sadly. Guilt again.  I on the other hand do have good times with her too to make up.  We are so much alike though.  lol sadly :( and goodly :)  hahaha So now dinner is done, everyone goes to their hideouts for the night, normal.  WTH is that anymore? If I don't say hey you wanna do this or that nothing or noone asks me to do a damn thing with them.  When I get upset cuz Ben and I 's relationship has dwindled he is like well I want to go fishing with ya.  LOL Um ok yep, knowing I don't fish or like to fish, I've gone a milliion times and have NEVER liked it!  I love being outside and taking photographs or reading or picnicing.  I don't know.  I want to be like we don't know how much "good time" we have together I should make the best of this.  But I'm not that way.  I want more than just me kissing his ass. I've been doing that for a long time and at my age, I want more.  so I'm doing more for myself, but I know deep down, I'm not happy and things aren't going to change until I am.  Some times I feel like I can do this.  Others I want to give up and run and hide.  I wish Ben was mean or would kick me out of his house and hate me...it would be easier.  I don't want to lose everything I have we've worked so hard to build our life together, but I don't have much fight in me anymore.  I am teetering on not having an f'n clue what to do.  I don't think anyone can help me.  I am not open to it anyway.  I  need to start painting again. I dont' drink or smoke...or relieve stress much. I want to do more outside and exercise.  I'd love to be physically healthy...I've given up on me so much. 
Today, my mom's client passed away.  She's a caregiver.  The lady was younger than my mom and mostly had pain issues, but wasn't unhealthy.  She had basically given up on herself years ago years ago!  She was adicted to pain meds.  And they killed her.  They destroyed her body.  Sadly now my mom lost a friend and her full time job.  I am scared for her and hope she can find a new job so she doesn't have to move into a crap subsidized apts.  They are awful...she lived there before.  :(  A prime example of someone who gave up on themselves and life. 
I'm not strong mentally. If I didn't have Willow I'd be so far gone right now.  :/  She is my saving grace.  Ben inspires me, his strength, but he isn't strong, he hides he stuffs it down...it's so surreal.  I'm so tired of thinking of cancer or how Ben is feeling or what is going to happen next, I'm so tired  of worrying about it all.  I am burnt out. I need a break from cancer awareness and adovacacy...terrible I know but while it's now a passion it's so exhausting  THIs is my life not jsut words I say or type.  If you haven't walked down this f'n cancer road you have NO idea.  I'm 33 and I have no future. I used to daydream or wish or look forward to my older ages.  Now I see blackness, emptiness, space.  If I want to make a goal it gets smooshed or destroyed by reality.  That is my life.  I'm being more honest here than I can be in life.  Who would I say this too that wouldn't judge me down to an inch.  Yes I'm horrible.  I'm not a saint.  I hate my life now.  I hate it.  I have to force myself to take this on, like a kid eatting veggies.  I hate it, it's good for me to push through the hard stuff even though all I want to do is give up.  Ben has said very few things about this ordeal.  That have stuck with me especiallly. 

He isn't giving up or letting cancer beat him or take him down.
He wants to give up sometimes, it gets tough.
He is more worried about how I and his daughter will live after he's gone.
Why him?

Living a life of purpose is one of the most difficult things I feel.  I'm exhausted. My mask is growing thinner by the days.

Sometimes I miss my old life

Some days I really miss my old life.  I try extremely hard to not resort to that though.  It's backwards thinking that will put me right back in depression, where I don't want to be!  So just for a moment I'm wanting to remember then I'll move on after this post!  


My life before cancer.  Let's see.  A normal day would consist of getting my daughter up, eating breakfast together, studying for spelling or whatever she might have been doing that day for school...I'd quiz her, it was fun, then off she'd go to school.  I'd do my chores, and then whatever the hell I wanted with NO judgement or feeling guilty.  That was MY time.  I would do anything or nothing!  Then Willow would be home, I would help with homework, make dinner, then Ben would be home.  He would come in all greasy from working on semi trucks all day long.  He'd take a shower, getting everything black.  We'd eat dinner together.  He was never a big talker but we had some things to talk about some times.  He would probably then watch tv or go out in the garage and mess around.  I miss that.  I miss seeing him in his greasy clothes all dirty from work.  I was so proud of him.  He worked so hard for us for years.  He is so smart and knows his job.  Responsible to the t.  I miss my alone time.  I miss him having things to talk about.  I miss our daughter being happy.  I miss the house being alive not just surviving like now.  We moved into seperate rooms last September.  While we sleep better, it makes me sad.  I miss snuggling.  I miss him so much.  And he's just in the other room.  All day every day.  Sleeping alot.  If it's the meds or everything he's been through I'm not sure, depression? Boredom?  Not sure.  But I sure miss him so much it hurts.  


Daughter's home now.  Put on my mask now.  


Thanks for reading.