Monday, July 29, 2013

Did the clock stop?

I have been couponing a LOT lately. Getting great deals~ spending very little money to stock up on stuff. It's something that pre-occupies my mind. 

Darnell starts radiation on Thursday. I have so many emotions and mixed feelings about life right now. It totally sucks how you can be going through one of the hardest trials in life, feel so alone but life goes on for everyone else. But you feel.....like life stopped. I feel like life as I knew it, stopped June 18th. When the love of your life, the person you have shared literally half your life with, have children with and simply love undeniably is diagnosed with cancer, you feel like life stopped. 

So while life has gone on for everyone else,  I feel like it stopped. I had a dream and in it I was out somewhere and all of a sudden was upset because someone said it was Halloween. I woke up and thought, that's how it feels. Or will I sort of "wake up" when it's all over? But in the dream I was upset b/c I felt like I had missed summer and fall. 

I have been trying to find resources for families like ours. It's not easy to find. You don't realize until you go through something like this how hard it is.. like all the other "stuff"....How will we pay all our bills? How do cancer patients that go through months of treatment and make it? 
2 of our kids have birthdays in August, we need to get school supplies...you know.. life stuff. 

In spite of all the "needs" we have and anyone has, God has blessed us. The FB group I am blessed to be a part of~
Rockin' Mommas started a meal train and has been bringing meals for our family. Our church did it to for 2 weeks after Darnell had surgery. This is such a blessing. It's nice to not have to worry about preparing or making dinner. I see God's hand in our lives. I just have days of doubt, fear, and insecurity. 
I'm a work in progress... working towards to finding peace when I feel like life is coming apart at the seams. 

Heads up to any friends/family that may read my blog~ if anyone has said to us "if you need anything, seriously  just give me a call"... well you may be getting calls!  We need our family and friends now more than ever. So thank you for being here for us. 

Saturday, July 20, 2013

How I feel~ raw and real.

I can't believe how fast the summer is going. I had a dream the other night that it was Halloween and I was all upset b/c that meant winter was coming. 
I've said this before and I'll say it again for I go any further.. since this is my blog, if I sound like i'm complaining or whiny.. stop reading now. This is my outlet. I share b/c I've had a lot of people tell me they appreciate my honesty etc.. for anyone who wants to pick apart what I have to say or tell me how I "should" feel.. leave now. Not trying to be sassy but I am just not in a place that I need anyone's judgement or advice. 
I feel like this is the hardest season we've ever gone through. Which is saying a lot. We've dealt w/ A LOT. Haley has had so many surgeries and bladder exstrophy doesn't go away. It's always at the back of my mind that her having a UTI can pop up at any time. I don't lose sleep over it, but it's there. Isaiah is in a contant state of almost crisis. Right now we are deciding if we should home school him. I am tired of fighting to keep him in a school system that requires me to continue to fight every single year for something they should just do for him. So there's that. I worry about Jeremiah and Savannah having to watch their siblings go through all this and make sure that I am there for them. Cancer. That by FAR has taken life and stress to a whole new level. Seriously. I keep hearing, well at least it's not....blah blah blah.. well guess what? this is what it is for us. SCARY. it's rare, like not quite 6,000 men get diagnosed w/ sarcoma in the US a YEAR. Trying to deal with the fact that my husband is going through cancer treatment is hard. I'm tired of hearing about how worse it could be. I didn't want him to have to deal with this at ALL. I think i need to talk to other wives that go through this.I need to talk to other moms who deal w/ the same issues as Isaiah, I've already talked w/ mom's that have kids that have Bladder Exstrophy. All these conditions and rare things that we juggle. And I'm trying to juggle my emotions from all of it. I already deal w/ depression and anxiety. I know God is here and all that goes with that. I know that as a christian I have to listen to God's truth and not my feelings. But dang.. this crap is overwhelming. 
I hate seeing my family go thru this. 
I can't NOT feel that. The ripple affect of all of it scares me..
I feel like I'm completely failing at being a supportive wife to Darnell right now. I need to be Isaiah's advocate and get him help( which I am working on)..
Yes I need to talk to my counselor. but all of the cirumstances don't change. I know I can't change them, I have to change my attitude. Well when I figure out how to make depression and anxiety and fear go away... I can't fix that. I am working on my attitude. today however.. like I said.. this is where i'm at. 2 of our kids have August birthdays, school starts in the beginning of september.. we have to figure out how to get school clothes and supplies and shoes..those things always work out..maybe just unloading all that runs through my brain on here helps.. i don't know. I just know that I trust God but I am angry. It's ok to be angry with God. He can handle it. I'm angry and sad and I wish I had that freaking happy go lucky-life will get better- attitude. I don't. 
I want to cry. I want that horrible feeling in my stomach to go away. 
so i've gone on long enough. 
in all honesty...I'm overwhelmed, scared and mentally and emotionally exhausted. 

Monday, July 1, 2013

Sarcoma

Darnell had surgery on June 21, 2013. They removed the rest of the cancerous tumor. He had to spend the night.  He has a 7 1/2 inch incision. It goes across his upper thigh/lower buttock.  The Dr took a lot of tissue from that area so that there will clear margins-meaning no cancer cells all around the area. He had to come home w/ a drain. it was so uncomfortable for him. But it was necessary. Otherwise fluid could've built up in that area because there is now a large"cavity" where they took the tissue out. 
The pathology report showed it was stage 1 but Sarcoma is rare. There is a grade, mild, intermediate and high. His was high. So it was a small, super-ficial tumor that didn't spread but is a high grade. He sees the Radiology Oncologist at Froedtert on Wednesday. From the reading I've done ( prob too much) but the facts we need to know from the Sarcoma Center info from Froedtert, a person MUST see a Sarcoma specialist. It's so rare that it's just necessary. I'm very thankful for Froedtert. he could have seen someone here in Racine, but why go here when we can go to the best? 
He's off work for at least 6 weeks. Maybe more depending on the radiation. 
It's been a rough 2 weeks. I feel like it's all not real. 
I am trying to be positive, to look at all the good things. To be honest.. I just can't get past the fact that my husband is dealing with this. It came out of nowhere and blindsided us all. It's so much to take in. So keeping a positive attitude is a bit hard when I'm still trying to wrap my head around this.  There are so many unknowns and it just scares the crap out of me. I try so hard to keep my mind on the facts, on what I know to be true and that God hasn't changed. But jeez.. this is probably the hardest thing I've dealt with. And I'm not even the one that is physically dealing with it. I love Darnell so much. He's my best friend. We've grown up together..and we're going to grow old together. 
Tonight, I'm just scared. For him, our kids, myself. Cancer is scary. 
I'm trying to find resources for families dealing with this... help w/ insurance when it all gets expensive.. short term disability is an extremely small amount of money to live on. so I have to research.. find out whats out there for families dealing w/ cancer. I also am couponing like crazy.. trying to stock up and get the very most out of our money as possible. I thought about trying to get a job.. but seriously.. If he's going through radiation treatments and who knows what that looks like or how long that will be.. and hello... we still have 4 children that need their mom. So.. couponing, saving money, selling stuff on rummage sale sites on Facebook.. whatever. I'll do what I can. 
I am glad he sees the oncologlist on Wednesday so we'll get some answers but on the other hand, i'm scared to death. 
I know all the " Trust God, be patient, be positive, ...stuff" All of that is good.  However, right now, facing this, I feel freaking scared. I am sad for my husband, my kids, myself.   No one can tell you how to feel. You have a right to how you feel. I tell my kids that all the time. Like, if you are angry.. ok, you can be angry. Who am I to tell you how to feel or not to feel? What you do with those feelings is what matters. I will take these feelings and lay them at God's feet. That doesn't mean I don't hate this, that I hate feeling like this and that I'm just having a hard time. I'm doing the best I can. 

This month is Sarcoma Awarness Month. another rare condition that we are now aware of. God.. I am eager to know why? I guess we all feel that way. But I'm kinda looking at it like, my daughter was born with bladder exstrohpy.. she'll deal with it her whole life. My son has psychological issues that just get worse and we can't figure it out.. I deal w/ depression and have Chiari and it causes horrid headaches but can't be treated b/c it's not severe enough. Now my husband had cancer or has cancer, I don't know what to say. Will be in cancer treatment. And my 2 kids that don't have issues have to sit back and try and deal with all this. So, yeah.. I'm pretty pissed off. I'm tired of watching my family suffer. So yes I am trusting God b/c there is just nothing else I can do.