Trying to get myself together.

Well I am trying to get myself together. I feel like my mind is all over the place. I'm trying to get organized in so many areas in my life. I am trying first to get my blog looking like a real blog.. start one about couponing but when I try to put it together I can't figure it out. We are homeschooling Isaiah but honestly with everything that's gone on... I'm really not starting till 2nd semester. He can't handle all the changes and honestly I can't either. 

The reality of Darnell having had cancer, gone through everything he has, how it's affected me, the kids, our entire life has hit me like a freaking mack truck and most of the time it feels like I'm stuck under it. I cry. ALOT. most of the time I don't even know why.  

The person I want to be, strive to be feels so far off. I don't want to complain and be crabby. I don't know how just naturally be happy for things I do have. I am thankful for so much. But this depression, anxiety.. what I feel is post traumatic stress syndrome b/c I've dealt with that before. I don't know how to get past this. I have faith, I have some hope although that is dwindling away. I hear all the things people are supposed to say.. have faith, pray, rely on God, etc.. well I am doing that. And I hate sounding like a broken record but I am just so tired of these huge life changing things happening to us. I'm emotional and with this depression I deal with, most of the time it just feels like I'm going to barely make it through it all. 

I'm not embarrassed to say I'm medicated. lol. or that I am going to my counselor. One that I need to see on a regular basis. 
So I'm not in a good place. I just am trying to get through really one day at a time as cliche as it sounds. 

I will be getting a couponing blog up and running soon. 

Read at your own risk. see a glimpse of how a mom/wife feels dealing w/ autism, bladder exstrophy, cancer, depression...

I wrote this Wednesday night, today we went to Froedtert(thursday) and Darnell saw the oncologist. No infection-just not healing properly. He's in A LOT of pain. He has a stronger cream that will help heal the skin where the incision and radiation are/were. It's been an a long day. What is written below is well... still true. lol. I am thankful for such WONDERFUL family and friends. And I am so blessed to be Darnell's wife and the mother to 4 awesome kids. Now brace yourself if you choose to read my rant :)




Well Darnell's been done w/ radiation for a little over a week. The site is irritating him so much and there may be an infection starting. Today he stayed laying down all day so he could just keep clothes away from it and sorta let it breathe.  he is supposed to go back to work on Tuesday. I know he has to at some point, but w/ the way things look right now, I just don't know. However, I realize that once he gets moving etc.. it may be just what his body needs???

Our benefit is Saturday. I'm excited. We have so fabulous friends and family. 

And because this is my blog and if you read my opening statement at the top of my blog that says something along the lines of " I will complain, swear, whine etc.. if you don't like it.. you know where the exit button is on your browser. Seriously. This is MY place to vent. no one has to like it or agree with it and if you judge me for it, well shame on you. you aren't living what I'm living. You aren't walking this road or feeling what I'm feeling. We have had A LOT of things thrown our way. God gives us grace and people to help us through. But I am also human. with real emotions that sometimes.. just need to come out. I NEVER in a million years thought this would be something we'd deal with. I guess no one thinks that. However when this hit, we had been ( and will always be ) dealing w/ Isaiah being autistic. Haley has bladder exstrophy. I deal w/ depression and anxiety. All the self help books and feel good sayings that I try to post in my house DO NOT help when I feel like everything is falling down around me. 

I'm trying to keep my head above water. keep up with the best ways to deal w/ Isaiah, how to help Haley go through her teenage years and having bladder exstrophy and chronic pain.. AND make sure Jeremiah and Savannah know that have just as important place in this family, it just doesn't require medical stuff. My God, I feel like shit. 
I don't want to hear" it could always be worse" guess what? this feels WORSE. Do you( whoever) know how to wake up and try and deal with a 10yr old boy that CANNOT express himself enough to tell us what he wants to eat? Or try to get him to take enough miralax so his bowels don't back up so bad he needs an enemia?? Haley's spasms hit her like a ton of bricks sometimes that it takes her breath away and I CAN'T do a dang thing about it. 
 I am TIRED of watching them suffer. Yes suffering produces strong people...etc... well as the mom, it is Hell to watch. 
And now to try and help my husband through this cancer ordeal. But oh they got it all... he looks fine...it's no big deal.. REALLY???????
35 radiation treatments.. a 7 1/2 incision and they took all the tissue down to his muscle. that's not a big deal? bull shit. He makes it look like it's all fine. He's awesome at that b/c he doesn't want anyone to worry. I admire that about him b/c I OBVIOUSLY can not do that. But cancer is now part of our reality and will be for a long time. Eventually I , as his wife, will learn to not feel afraid. He's the love of my life. I've been with him more years in my life that I wasn't with him. 
And to top it all off I am dealing w/ a situation that I SERIOUSLY so angry about I don't know that I have ever been this angry about. ugh. 
So.. I'm highly emotional, mentally and physcially exhausted and DO NOT GIVE A DAMN what anyone thinks, says about it. I know I'm doing my best. Darnell sincerely loves me JUST AS I AM. flaws and all. I really do want to get away for like 4 days- just him and I. sleep, eat some good food, watch Parenthood on Netflix. Just be. So.. I'm going to bed. I can't stand anymore of myself tonight. I am so thankful for a God that can handle all my craziness. all my emotional ups and downs and outburst. 
When I want to lash out at God for allowing things to happen, I can, b/c he can handle it, but then he provides people and family and friends that come in TRULY do right by God and by us. So yes I'm still angry but....God is big enough to handle it. He created me to be me. he know what he was doing and when i don't like myself, well actually when I take a look in the mirror.. a LONG, real look and literally can't stand looking at myself, he says " You are FEARFULLY and WONDERFULLY  made" we are made in his image. Sin and life cause all the other crap. But He doesn't change. Good thing. too much in my life changes and lately not for the good. so there you have it. Well most of it. I left out some stuff that can be left unsaid b/c God is giving me the ability to shut my mouth. SHOCKER. right? The benefit that our friends are throwing for us means so much to us. I hope as many people that we invited can come. And not b/c it's a benefit and obviously raises funds to help our family.. but to see the people that have been behind the scenes, praying. Seriously. ok. i'm done. if you made it through this big 'ol huge rant without clicking out of it, well you deserve Starbucks, because, well you  know.. that's what I would want if I was going to win a prize. Venti Salted caramel mocha. wouldn't it be nice to have a deliery service EVERY morning? 


http://www.gofundme.com/4b7e6c<object classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" width="258" height="338" title="Click Here to donate!" type="application/x-shockwave-flash"><param name="movie" value="//funds.gofundme.com/Widgetflex.swf" /><param name="quality" value="high" /><param name="flashvars" value="page=Darnell&template=0" /><param name="wmode" value="transparent" /><embed allowScriptAccess="always" src="//funds.gofundme.com/Widgetflex.swf" quality="high" flashVars="page=Darnell&template=0" type="application/x-shockwave-flash" wmode="transparent" width="258" height="338"></embed></object>

Feeling...lost

Darnell finished radiation on Monday. Praise GOD! 
At first it seemed like those 7 weeks would take forever but it went fast. Well for me it did, maybe not for Darnell.

I'm feeling so weird tonight. I don't know where to go w/ all the thoughts and feelings rolling around in my head. Knowing that the "medical" stuff is done is a relief. D can concentrate on healing. As his wife, I feel like I have watched him go through all this, trying to take care of him, make sure the kids are handling it ok, handle my own emotions... sometimes, like tonight.. it all feels like it's TOO much. I take a lot of what I hear and what people say to heart. I don't let it roll off my back. I try, but it's just not easy for me. 
We have lived through Haley's surgeries, we live with watching her deal w/ spasms and the horrible pain it can cause her. We live with Isaiah, and him acting in ways he can't control. I want to be mad and angry but it's hard. I can't control any of it. Which of course, anyone can tell you DUH, no one can control what happens. I just feel like there are too many balls to juggle. Too many hard, life changing things that we deal with on a daily basis that no one really gets. Seriously, who deals w/ a child w/ bladder spams and infections everything that goes along w/ bladder exstrophy? There is a small percentage. I tap into that group, but people we know have no idea. Trying to stay educated on Autism, specifically asperger's, how to deal with it, how to help Isaiah, how to help our other kids deal with him... I could go on and on.
Now sarcoma. another rare thing. something no one knows hardly anything about. 

The big things pass but all the little things are still there. the little things that turn into big feelings, big stressors...
I see how God is taking so much and turning it into Good things, but honestly, can he use someone else for a little while? I'm exhausted. Our family is exhausted. 

I am in no way not thankful for the blessings that have come out of the all the hard and seemingly hopeless situations. however I am human. I have real , raw emotions. I don't want to watch my husband and kids go through any more pain. that's the bottom line. so i give it all back to God. Even though I honestly am not feeling the "feel good" emotions of it, I choose to do that. It's a hard choice, but some days the little bit of faith I have is enough to get me though that day. And God comes through. Every time. 


So tonight, I'm sad and restless and really, no one can make it better or say anything that I haven't heard before or probably said to someone else that's going through a hard time. This blog is my outlet. 
honestly, i want to go sit on a beach and not think about anything. ha. not going to happen but that's ok. The video I posted ( if I did it right, is a glimpse of what radiation was like. Our awesome friend Ivan did this. 

http://vimeo.com/75454809

Way back when......

Way back when, 17 years ago actually we were bombarded with people telling us we were too young to get married. The odds were against us. We were young, poor, had a baby on the way, yada yada yada. 

   Well it was hard. sometimes I thought that we wouldn't make it through a day. But all the things people warned us about... didn't happen. We didn't get divorced. We didn't fall out of love. Instead, we held onto to each other. 

  THe things we did deal with are so FAR off from what young, married couples are warned about. We found out real fast what it's like to watch your child suffer through surgery right after birth, not be able to hold her while she was recovering. Having to leave our 2 year old little boy b/c his sister needed us, but then, so did he. Those are the things I NEVER expected to have to deal with. Yes we dealt with the money issues people deal with when you don't have a degree and a decent job.. when you have to survive on 1 income. But that is NOTHING compared to the things I have had to watch my children endure. Memories I have that will literally haunt me forever. Ok so that sounds dramatic. But if you watch your child scream, call for you to hold her b/c the pain she's in is worse than what an adult could handle ( those words are straight from the orthopedic surgeon's mouth and he's the best in the state). That WILL haunt me. I have too many memories I wish I could forget. 

Leaving my Jeremiah and Savannah when they were at ages that they were changing, learning new things all the time. things I was missing. I almost missed Savannah's first step. I missed 2 of Jeremiah's birthday's, it was 2 years in a row. 

And Isaiah. Dealing with Autism, which is mental and emotional is so different. surgery won't fix it. It took 8 LONG years to get a diagnosis for something I KNEW in my gut was there since he was 2yrs old. Again, having memories of seeing him battle and rage the war inside of him...Watching the other kids just look at Darnell and I wondering what in the world should we do? Being in the school system that did nothing but make it harder for him. Some kids, being in the classroom is what works for them, they thrive. For Isaiah-it is his biggest trigger. 

Now watching Darnell battle cancer. He is winning. The tumor is gone, the radiation is almost over. He's in pain. At the site of the radiation, is right along the incision from where the surgery was. It's a 7 1/2 inch incision that is dry and sore and he's in pain and so tired. Today Haley stayed home from school b/c she was having such horrible bladder spasms. She said to me.. " mom.. no one knows what it's like to go through what we do" They just don't know how hard it is. It breaks my heart that my daughter is feeling like this. I know one day she will hopefully understand that God has a reason, a purpose. But honestly I don't see it right now. 

we started off w/ the odds against us b/c of our age and circumstances. Turns out the birth defects, mental illness, rare cancer, depression.. all those things are the things we battle. Our marriage isn't perfect, but I'll tell you what...
I love my husband more than I could ever describe. People tell me, well they got all the cancer. he looks so good. he's got a good prognosis. All of that is true, and is a blessing. And it's the thing you say to a family dealing w/ cancer. 

Being the wife, the one that just can't "do life without HIM" feels like my world changed June 18th. It changed Jan 17, 1999. and Sept 13, 2013 ( well years before that really but that is the day we got a real diagnosis). 

Jeremiah and Savannah watch all this happen. They have to deal with this in a way I may never understand. I try to talk to them and be here for them. Darnell talks to them. Our lives, our life at home is 100% upside down. My daughter telling me that people just don't get it, that they don't understand how hard it is to live our life... makes me sad. I can't make all these circumstances go away. 

Darnell and I will be with them, next to them every step of the way. We will pray with them and for them. I honestly will probably cry my eyes out for them b/c I hurt for them. This life, is harder than I ever expected. 

But I do have hope. some days it's the size of a mustard seed. And that's all I need. God can work with that. 
I didn't plan on writing all this. But I guess I want to let people in on what it's really like to have all this going on... to not know when I can buy new shoes for one of the kids or jeans or even a decent dresser and bed for Isaiah. A room that will be helpful for him. 
This is a bit of a raw look at the inside of our life. So 17 years ago- they had it all wrong. We are in love. with each other and with our kids. We just have a s#it load of RARE things were juggling. 

Here are some pics of Isaiah's room- I want so badly to make it "Isaiah friendly" and have no idea how to do it. 

Isaiah's room- I took the pic from his doorway 

Isaiah's dresser w/ his BIG 'OL TV...

A panaromic view..

so much going on....

The kids went back to school this week. Haley started high school. wow. that doesn't seem possible. We started homeschooling Isaiah. Well kind of... We see the neuropsychologist next week to get the results of his big 4hr evaluation he had last month. With what she has to say about all that, we can go from there. There are a lot of gaps that need filling. 
I don't know exactly what he's capable of. I don't know how he learns the best. There's so much I'm glad to be finding out. In the meantime, I am looking on all these homeschooling websites and blogs and Pinterest.. trying to find planners and ideas etc.. I have to say.. I'm on overload. 
I love to coupon. I save us a lot of money but that is a lot of work. I need to get organized a little more, and pick a day or two that  I spend awhile looking for the deals I want to get, put it all together and leave it at that. 

Darnell's radiation is going well. He's got a little over a week and a half left. He's tired. I think he's a lot more tired that what he'll ever admit, but it's just the way he is. I can't fault him for it. The last 3 months have by far, been the hardest, longest, weirdest EVER IN MY LIFE. My mind doesn't shut off. My emotions are up/down up/down..I do my best to focus on what I know to be true. I know God doesn't leave us in the midst of the storm. I don't understand why he allowed it. Especially when we were already dealing w/ enough. However, it really isn't something I need to concentrate on. Sure doesn't change anything. Figured that out real quick. 

I'm exhausted in every way possible. I just don't feel like I can keep up. I've said this before, but I can't wrap my mind around Darnell having Cancer. it's that word. that horrid, life altering word that turns people's world upside down. He has a good prognosis but no matter how you shake the dice... it's cancer. radiation. MRI's..all of it.. so much. How can this be real? Almost 3 months after he was diagnosed I still can't believe it. My heart is still broken for my husband. My human emotions kick in and that's how I feel. I find it hard to not be emotional. I do have faith.. that hasn't changed. Being a human, a wife, and dealing with this, I feel scared and sad and broken. 

So.. I need to go to bed. I haven't sleep normal since June. 

Tales from an exhausted mom & Info about Soft Tissue Sarcoma

I am not going to lie or pretend I feel all good inside b/c honestly, I feel like junk. I have been battling migraines that land me in bed for a day or two at the very least. REALLY not the best timing. 

Darnell's in his 4th week of radiation. He'll be done Sept. 24th.. so a little less than a month left. He's doing well. Very tired but all things considered, he's doing well. 

If you've read my blog before you are prob familiar with my ups and downs w/ depression. It can be such a paralyzing thing. And sometimes there is no rhyme or reason to it. One day I feel so optimistic about it all, the next ( today for example) I feel like, how the hell did my healthy 35 yr old husband end up w/ cancer? Then again, how does anyone? he's not the only one. We aren't the only family facing this. but I'll tell you what, when this crap hits home, it hits the fan.  Dealing w/ short term disability that doesn't pay you( no joke, either. 1 check from them in 2 months.. there's always a check on the way when we call...grrr) dealing w/ paper work and FMLA and just EVERYTHING. The reality of CANCER.
So to recap, yes his tumor was removed. They got it all. The radiation is basically killing anything that could come back there. All good news. I tend to be a bit cynical and think well.. it's a rare cancer and now what if it comes back. that will always be there. I realize this thought process does not line up with anything having to do with my faith. This all comes from my natural, human thinking that I just can't keep pent up. 

We have some AWESOME Friends who have fundraisers in the works~ a car wash on Sat Sept 7th.. our benefit on Sat Oct. 5th. We've been blessed in so many countless ways. 
So i don't want to be a complete downer and act like all that great stuff isn't so wonderful. It is. 
I'm just still overwhelmed with school clothes and homeschooling Isaiah  and fighting this depression... and well just living. 
I do want to blog about couponing. I am finding that to be extremely therapeutic and I am trying my hardest to build a stock pile of things we use and will need. I am getting there. So I will blog about that. I am always looking for coupons. I wish I had a hook up to the Journal times or someplace that gets rid of papers.... lol.. but seriously.. 
So I am going to ask that if you pray for our family, would you pray specifically for a few things? 
~continued strength for Darnell as he finishes radiation
~ that when the kids go back to school things will go well for them
~ that I can do my best homeschooling Isaiah. We know it's right for him. I'm just nervous.
~ that the paperwork, short term disability would work out
~ and this is a funny one, but I know God well enough to know that he is capable of anything, that I would get the hookup for MASSIVE coupons. Seriously.  
~ And that God would pour his blessings and provision on Amanda Lehman, Jim and Jodi Pritikin and all the others that are busting their butts to help us. 

So i'm done. i'm exhausted. 

A little bit about Sarcoma~

Types of Sarcoma

There are more than 50 subtypes of sarcoma, and there are two basic categories of sarcoma: soft tissue sarcoma and bone and joint sarcoma.

Soft tissue sarcomas make up less than 1% of all cancer cases. About11,000 people are diagnosed with soft tissue sarcoma in the United States each year.

Primary bone sarcomas make up less than 0.2% of all cancer cases. About 2,900 people are diagnosed with bone and joint sarcomas in the United States each year, and almost half of them are under the age of 35.

How are Sarcomas Diagnosed?

A patient may see several doctors and have a variety of medical tests before sarcoma is suspected. The diagnosis of sarcoma is usually made with a biopsy, when a doctor removes a small part of the tumor for examination. The decisions involved in the biopsy approach can be complex and are best made by a sarcoma specialist.

After the biopsy, a pathologist looks at the tumor tissue under a microscope to make a diagnosis and to determine the tumor's grade (which indicates how aggressive the tumor is). The determination of which sarcoma a patient is diagnosed with should be done by a skilled pathologist with extensive background in sarcoma pathology. Results of the biopsy and other tests are typically used to provide a disease stage (which indicates how advanced the disease is in the body). Learn more about sarcoma diagnosis.

How are Sarcomas Treated?

Starting the Journey

Dr. Meyers provides a brief and hopeful introduction to the journey with sarcoma.

Sarcoma treatments vary by tumor type, grade and stage

but nearly all sarcomas are treated with surgery when it is possible. The goal of surgery is to remove all disease from the affected area(s). Some low-grade tumors only require surgery, but many sarcomas are treated with chemotherapy and/or radiation therapy in order to prevent or get rid of disease that spreads throughout the body. These treatments may be necessary before or after surgery.

The duration and intensity of sarcoma therapy can be surprising and disheartening to patients and their families, and coping with the side effects of treatments can be a challenge. Many patients and their families choose to join support groups, which can be a great source of information and strength. Families can also seek counseling and support services at cancer centers and local charitable organizations. Learn more about sarcoma treatment.

Are Sarcomas Curable?

Cures are treatments that eradicate an illness permanently. Many sarcomas are curable, particularly (a) low grade malignancies which only require surgery and (b) the pediatric sarcomas. Still, many physicians don't use the term "cure" when talking about sarcoma. Dr. Bueckerexplains:

As opposed to most types of carcinoma, there is really no time when "cure" is felt to have been definitively achieved. Sarcoma is a lifelong diagnosis, and should be treated as such. Having said this, most recurrences or metastases will be discovered within the first two to five years after treatment. Once the patient has cleared the five-year mark, the risk of recurrence diminishes greatly, but still certainly exists.

With regards to soft tissue sarcomas, typically a course of radiation therapy (often about 5 weeks’ worth) with or without chemotherapy precedes surgical resection. While the decision to give radiation before, after or before and after surgery remains somewhat controversial (or may change on a case-by-case basis), it is certainly an integral part of the treatment plan for these tumors. Logistically, it adds a component of complexity for the patient, requiring daily treatments for about 5 weeks.

For more information, see the ESUN articles aboutdealing with the side effects of sarcoma treatment andcoping with sarcoma.

Given the length and complexity of treatment for bone and soft tissue sarcomas, it is no wonder that patients often become disillusioned and frequently depressed during the process. It is important for patients and their families to understand that this is a very normal and natural response. Commonly, centers where sarcoma patients are treated have resources and/or personnel available to help patients and their families cope with such accompanying psychological difficulties.

Once the course of treatment has been completed, a necessary schedule of follow up begins. Usually, this means visits with some type of imaging and/or other ancillary testing (cardiac testing, laboratory exams, etc.) every three months for 2-3 years, every 6 months until 5 years after treatment, then annually. Many permutations of this certainly exist, and schedules are often varied for a particular patient, predicated on many potential factors, most frequently the presence of metastasis (disease spread).

As opposed to most types of carcinoma, there is really no time when "cure" is felt to have been definitively achieved. Sarcoma is a lifelong diagnosis, and should be treated as such. Having said this, most recurrences or metastases will be discovered within the first two to five years after treatment. Once the patient has cleared the five-year mark, the risk of recurrence diminishes greatly, but still certainly exists.

With current treatment protocols, many more are surviving sarcomas than ever before, and research is ongoing. Prognoses continue to improve. With these advances and the relatively long lifespan of many of these patients, the importance of long-term follow up and recognition of distant treatment sequelae becomes even greater.

Article Excerpts Copyright © 2005 Liddy Shriver Sarcoma Initiative

http://sarcomahelp.org/sarcoma-treatment.html

Just keep swimming.........

We just keep swimming. Even if we, or I don't want to. I want to stomp my feet and yell at God and tell we have had ENOUGH! I am tired of watching my kids deal with physical disabilities and psychological disabilities and now watch my husband deal w/ cancer.  Watching my kids see their dad not be "normal" is so hard. Granted his prognosis is great, according to the oncologist up to this point. But Darnell still is a cancer patient. He is in the middle or radiation. All of it takes a toll. 

I don't know how we would have made it this far w/o the support of family and friends. This benefit/fundraiser is an absolute LIFE SAVER. Seriously, there aren't enough words for us to express our gratitude. So many people willing to help and support us! I just hope enough people come b/c so many people are donating awesome things to be raffled off.. they are taking time and $$ to put these things together for our benefit. 

Darnell's handling radiation so well. He's tired and the area is starting to get irritated, but so far that's all. His short term disability department at work can kiss my a$$. We have received ONE check from them. He's been off work for 2 months. I want to call someone and rip them a new one but whoever answers the phone, it won't be their fault.. it's a whole series of events that have led up to this. 
I struggle with the part of me that is a human being with raw, real emotions and I want to be angry about cancer, I want to be angry about bladder exstrophy and all the issues Isaiah faces. Some days I am angry. My emotions get the best of me. I want to shut down. But I can't. So I need to rely on God to get me past all that. It is HARD. But if I don't push through all that, I am not going to get done what needs to get done. It's that simple. 
On the plus side, b/c of all the medical bills, we hit our out of pocket limit so anything else we go to the Dr for will covered for the rest of the year. I wish that included dental. I have had a lot of work done but need a whole lot more but I hit the amount that the dental insurance will cover. Anything else I need done, I have to pay 100%. SOOO not cool. 
It's all small stuff in the grand scheme of things. 
I seriously just want to be home, with no where to go. I don't want to deal with people or appointments...

So forgive me if I'm not upbeat, positive.. but this is how I am at this moment. And I'm fighting the tail end of horrible migraine too. 

So... I do just keep swimming. like it or not.