Sunday, June 23, 2013

There are NO words.....

The word you NEVER EVER want to hear completely turned our world upside down in the last 5 days. On June 10th ( which just happens to be my birthday) Darnell had what his primary Dr said he was 99% sure was just a cyst. He had it for years but had recently ( like the last 9mo or so ) gotten bigger. So when his primary Dr saw him he referred him to a general surgeon to have it removed. He removed it in the office on June 10. A week later, June 17th Darnell went to get the stitches out and the Dr said they had to send out the tissue for further testing. WHAT? Red flag. The next day, June 18th I get a phone call from Dr. Stoltenberg himself telling me that what we thought was a cyst was in reality a tumor.. and it was a rare form of cancer called soft tissue sarcoma. I was DRIVING when he tells me this. 
I felt like someone punched me square in my chest. Darnell was at work. They wanted him to make an appt to get a CT scan ASAP to make sure there weren't any other tumors in his chest, abdomen or pelvis. I had to call him and tell him. I regret having to tell him over the phone. Who wants to get that news over the phone? But if he needed to contact the Dr's office etc.. how could I not tell him? And when he'd call me, b/c he always calls me on a break, how would I explain why I was totally losing it? So I ended up talking to the nurse, the Dr again and scheduling everything. 
When I picked him up from work he had to go fill out union stuff, short term disability ( which I have no idea how anyone can survive on what they pay us) The next day, June 19 he had the CT scan and blood work and more paper work. The Dr called later that day to say he didn't see any other tumors, just a spot on his rib. He believes it's a calisfication ( don't know how to spell tonight)... Friday June 21st he went in and they removed the rest of the tumor and a good margin of tissue surrounding the area. They went down to the muscle, but didn't have to take any muscle. The cancer did not spread to the lymph nodes. The site where the tumor is- well right in his upper thigh or more like his booty. They sent samples of the tissues to Mayo clinic to make sure nothing comes back abnormal. His bloodwork was all normal. 
With a sarcoma, it is rare. It's HIGHLY recommended that you see a oncologist that specializes in sarcomas. So he came home today. He's sore, he has a drain so that the fluid doesn't build up and cause an infection.. 
He's off work for 3-4 weeks at least. In that time he'll see an oncologist. We want to go straight to Froedtert. There's a Dr there that does specialize in sarcomas. We met a family from church that actually just went through this. They highly recommend this Dr. At this point, Darnell's cancerous tumor is gone, blood work looks good etc. However, for something that originally was said to be 99% not cancer.. we aren't going to play around.  He's had cancer in his body.  Our world changed DRASTICALLY so fast I felt like I was in someone else's world. 
And I'm not the one dealing with the physical reality of having cancer. I am his wife, I feel like my life, the love of my life and everything I have ever known since I was 17 years old when I met him was all of a sudden being threatened. 
We had to tell our kids.. we SOOO wanted to keep the "C" word out of it.. but it just wasn't going to roll out that way. How can you reassure you children when really, you don't have answers yourself? I felt like life was falling apart BEFORE June 18th... 
Well I guess I didn't know what that really felt like until I got that phone call. 
With all this being said, I know God is in control. As freakin scary as all this is.. scarier than anything I've ever faced. We have been overwhelmed with prayers and support from our families and friends. Darnell's facing kind of rough recover b/c of where the incision is. He's worried about being off work, paying the bills, putting gas in the van all those normal life things that go on even if you have cancer or had cancer or whatever. I have faith. In spite of it all, I do. I mean seriously..I feel like God is working overtime trying to get my attention. So he's got it.
This is just my view point. I feel like this week was surreal, like I couldn't catch my breath. I can't do life without him. Now, every bump, any kind of cyst like anything that he might have needs to be checked. I feel like this will follow him forever. Well it will. Maybe because everything happened so fast, and we are still kind of going, wait, " Darnell had cancer, they took it out.. but they still need to do a bunch of stuff to make sure it's not anywhere else... blah blah blah..." Maybe when we can catch our breath I'll not feel so scared of all this. Right now, I can say NO I won't ever be ok with this. But I know that God can give us peace that passes all understanding. 
Even as I type this, I can't believe I am typing it. a rare form of cancer. we must be a target for rare things, bladder exstrophy, I have this chiari ( where a bit of my brain pushes up against my skull and they say it's not bad enough to require surgery and shouldn't cause symptoms, yet I have them) and everything we deal with with Isaiah. I don't know WHY we got picked to be the poster family for the worlds most rare things.. things that have ridiculous odds of happening. I'll be asking God the minute I get the chance once I am in heaven. 
I am going to finally sleep. Darnell's sleeping downstairs on the couch b/c he can't go up and down stairs and he's terribly uncomfortable. But he's home. He's ok. I don't know what the future holds. But a week ago, before all this, I didn't know it then either. I guess now I just got a HUGE dose of what can happen, what does happen. I need to make the choice to be in the moment. sounds new-agey or whatever but it makes sense. 
I'm exhausted. I'm drained. I try not to worry about how our bills will get paid... but Darnell's alive. he's ok. God just has to help me handle the rest. I'm good at taking care of him. I was good at taking care of Haley after all of her surgeries and all the things she went through. So I know I am good at taking care of my husband. I'm not very confident about things, but I am confident about this. So.. there you have it. My point of view. how i have experienced this week. good night. 

Monday, June 17, 2013


I know they say "this too shall pass" 
I've been hearing that and saying that for years. I think it's crap. Today I do anyways. 
We have hit some huge issues w/ Isaiah again.. 
daily life is hard. Some days it feels impossible. NOTHING is working with him. He is going through a med change right now. He goes in August for a full neuropsych evaluation. 
This is breaking my heart. Seeing my boy go through all this is the worst part. I'm prob going to sound like I'm having a huge pity party today.. well so be it. I've watched my daughter endure physical pain that broke my heart.. and know that it's not going to go away.. I can't fix it. Now with Isaiah.. I'm watching him go through this mental/psychological meltdown after meltdown. He is starting to get physical again. 
I'm drained. I have NOTHING left to give anyone. Which is horrible, I mean seriously horrible because I am have 4 children, a husband.. I need to keep it together. I can't. I really and truly can't. 
Everything else-life stuff is feeling like it weighs a million pounds. a car we need to run isn't running.. one of my meds is going to cost almost $200 b/c I have to get a 3 month supply through our insurance. I don't have it. I'm selling scarves and trying to sell things on the FB garage sales to make extra money to put towards just a medication. My girls need summer clothes.. 
I'm seeing a counselor( THANK GOD) but right now, today.. I got nothing. I pray and I cry and do it all over. I realize I am prob supposed to accept the hand we are dealt.. we've been dealing with this for long enough.. but this is me. This is how I am. emotional. overwhelmed. and scared.