A few more from Halloween...

I needed to post a few more pictures of Halloween...I'm sorry, but isn't she just the cutest lady bug EVER?!

While I may have had the cutest lady bug ever...I also had the cutest witch ever. Sadly, most of my pictures of them together are on my front porch....and you all know how I feel about posting pictures of my house. So, if you wanna see them...you're going to have to ask. Otherwise, don't be scared of the picture below...it's really just Emma under all that green face paint!

Alphaba...my little green witch!

Perhaps my favorite picture from Halloween (PS, notice her microphone...I wasn't the only one that didn't hand out candy this year!!)

Candy? What candy?!

What a character...no wonder she didn't eat dinner!! Halloween used to be my favorite holiday...but I'm sure glad it's over!

Happy Halloween!

From all of us to all of you! Have a safe and enjoyable holiday!!

An entry...a vent...

I really haven't posted much in awhile because I've been in a funk. Usually my entries are so upbeat and positive, that it's hard for me to write and share when things are not that way. In an effort to prove to some of you that I am not nearly as strong as you think I am, I will share with you some of my thoughts and emotions over the last few days.

Of course, as you know, Nic had a seizure last week. After that I decided that I better know every one of his medications, what they look like, when he takes them, when he needs them. So there we are, this 30 year old married couple, going through a tupperware container full of medicines. And I lost it. I don't want this. I want Nic. I want my future back. I want my life back. Why are we going through this? When will I start to be OK with it?

Unfortunately, rather than talking to my husband about it, we cried silently together and I moved on. I push these feelings down every time they come up. I try to run away from them. Ignore them. Anything, to not experience them. So I did what all responsible adults do. I drank entirely too much wine. The next day I felt just as crappy on the outside as I did on the inside and for a moment...it was OK. For a moment, I could lay in bed. I could pull the covers up over my head and ignore everyone. My husband was so mad at me, he wasn't talking to me anyway!

And then I woke up and not only had I pissed of some really great friends, and people I loved, I now had a cheap wine headache and I still hurt inside.

So I started crying, with my mother-in-law, with my sister-in-law, with my husband, with my sister, with my mom...I've cried and cried and cried. And no, I don't feel better. I haven't accepted anything, but at least I don't feel like I'm holding it all in anymore. At least I don't feel like I'm trying to be someone I'm not. At least I don't feel like I need to be strong all the time.

What do I know? I know that Nic is still here next to me today. I know that he is doing well and is kicking some radiation ass. I know that some day, he is going to pass away and it's going to hurt like nothing I've ever experienced before. And I know that his love will get me out of bed the next morning. I know that Nic doesn't want to focus on the future and so I can't either. When I get sad, I can't push him away because he's still here to help me through that sadness.

Retail Therapy - Doesn't help
Drinking - doesn't help
What can I try next?! Let's go to Disney World!!

Reality Check

How quickly we can create a new norm in the world of chaos. How quickly Nicolas likes to remind me that normal no longer exists.

Last night we went to BTSG - Brain Tumor Support Group - as I have referenced several times in the past. Nic and I were a little apprehensive about going. We had to get in front of the group we have come to know and trust and tell them what has been going on. Several of our guest speakers in the group, mostly doctors, have called the survivors in the group the "Creme of the crop". Survivors of tumors that decided to stop taking chemo and have lived 20+ years. Survivors that had 12 hour long surgeries, had a stroke during the surgery, and now lives to tell the story. Survivors that have no memory, what so ever, but can still function, laugh and live. There is so much hope in that group...we hated to be the downers. But there we were, telling our story and immediately, feeling the group lift us up. Then Nic decided that we hadn't be hit hard enough in the head with the reality stick and he decided he was going to have a seizure, right there during group.

Somehow Nic managed to get some of his medication in his mouth, which helped slow down the seizure and it never turned "full blown". In fact, he was able to stay in his chair the entire time. I spent most of the group making phone calls to doctors and tyring to figure out what to do next. At one point, the facilitator came out to check on me...She was so great. She listened, she supported...I know, I know, it's everything a tumor support group facilitator should do...but she did it so well. And in 5 minutes, I feel like our group became closer than it ever has been. We sat through the rest of the meeting, just to let Nic regroup a little. Then we all started to go home. We all hugged. Nic and I accepted more prayers, more thoughts of concerns, more support. More proof that we aren't going through this alone.

Today, Nic and I stay on Red Alert. Every twitch, every movement, I worry. We had a lesson on Nic's meds last night and I can now identify each pill based on color and shape. I know exactly how much medication he should take and when. I carry an extra supply in my purse. I cried for the first 5 minutes of the lesson. It's amazing the things we do and the people we become. The things we do that we didn't know we were capable of.

Nic's doing well today and I was able to take him to his 5 radiation appointment and met with his radiologist, Dr. Richards. I officially pardon everyone from trying to remember all of Nic's doctors. I can barely do it!

The rest of the afternoon we spent at JoAnn Fabrics (which I just happened to find a few blocks from Nic's radiation center!) looking at paper for our Christmas cards. So TAKE THAT reality! You might think seizures and medication lessons are our normal. Dana and Nic are here to show you that we will keep things like Christmas cards and grocery shopping OUR reality.

Perfect Fall Weekend

What a weekend! Do you ever feel like maybe you try to cram way too much into a small time? That was us this weekend! We started the weekend with our annual trip to the pumpkin farm. We were very sad to discover that our favorite pumpkin farm has closed. We thought things looked funny as we pulled up to the farm. The chain around the gate and the "for sale" sign were all pretty good clues that they would not be happy to find us tromping around their fields looking for pumpkins. In a last minute attempt to relive our previous year's memories, we went to another patch down the road. It was pretty much a plowed field with pumpkins strategically placed. Nic really really wanted to leave. He was very sad we were not taking a hay wagon to a field to pick our pumpkins. I convinced him that the girls were having fun and didn't know the difference. We picked our pumpkins and still got to take a 15 minute hay wagon ride around the fields. Nic and I chuckled all the way home and have another chapter in the Terrones book of great memories!

That night, we went to Nic's parent's house for TBRPK. Otherwise known as Tortillas, Beans, Rice and Pork Chops. None of us really know where the K comes from. I think a text misprint...but that's an entirely different chapter of the Terrones Book of Memories! Nic's entire family was there and it was just a great time all in all. Plus, Eleanor was pretty excited to ahve her first sucker! I was a nervous wreck, but we had a close eye on her!

Some of us even spent the night. We hung out on the porch, enjoyed the last warm nights of fall, drank wine and shared stories. Pretty much my definition of a perfect night...until I went to bed and didn't sleep at all. I just don't sleep well in the same room as Eleanor AND she woke up at 4:45.

Sunday we went to a friends house for the all to pathetic Packer game and then came home and played in the leaves...I mean...racked the leaves. I had two very tired girls at the end of the day. So tired, in fact, Eleanor decided to jump in the bath tub...prior to taking off her clothes. Like all good mothers, I ran to get my camera, prior to getting her out.

It was a great weekend. For a moment...we almost felt normal. It's funny, because not matter what we are going through, weekends like this make me sit back, observe my beautiful family and think, Right now, right in this moment...I'm the luckiest girl alive and I have everything I have ever asked for.

D is for Decision

Today was the day. We drove to Madison and had another conversation with another doctor. After listening to Dr. Howard, Nic decided to go forward with the radiation. Some of you will be very surprised by this decision, others of you, not so much.

Not going with the radiation was certain death. Radiation is certain uncertainty. Dr. Howard feels that he can target the two main areas of the tumor and give Nic a few more months of standard living. He said that radiation effects won't be immediate; the effects usually start to appear 6 months post treatment. Dr. Howard DOES feel it would be beneficial to continue with the Avastin. He said even if it isn't stopping the growth of the tumor, it is decreasing swelling (which often leads to Nic's seizures). Dr. Howard is formulating a plan and will get back to us in the next few days with just what that plan will be.

I am so confused and so overwhelmed. I don't know what is going to happen. The radiation could have no effect on the tumor what so ever and Nic could pass away before treatment is over. The radiation could slow the growth of the tumor and we could have a few more months. The radiation could, once again, be a success and Nic could double his life expectancy. The radiation could get the best of Nic and affect him in some way we aren't even thinking of.

So, what do we do? Well, we are going to try and live life. I'm going back to work tomorrow. We went grocery shopping today. Yes, my husband is dying but he has clearly shown us that he does not just want to sit in the basement with the blanket over his head and wait for his death. Nic has clearly shown us that he is going to fight this monster until the very end. Am I alittle surprised by his decision to go with the less certain, less predictable choice? Yes, surprised. Shocked, no. Nic's a fighter. Nic is strong. And Nic is going to live his life, as he chooses until the very end.

Again, I know that so many of you are looking for ways to help us right now. Right now, more than anything, we want to feel "normal". We want to keep living life, in that daily routine we have grown to love. Messy floors and all. We'll need your help soon enough and I promise to you, when we need it, we will ask for it. We know we can not do it alone, as you have all proved to us already. So continue to help in the way you have been: the thoughts, the prayers, the texts, the cards, the e-mails...You have NO idea what it's like to get those daily messages, knowing you are all in this battle with us. We display the cards in little places as constant reminders we are never alone. And it's so good to just be carried for awhile.

We will keep you all posted. Love and hugs, Dana and Nic

A quick thanks...

Dear Family and Friends,

I can't thank you enough for all of your e-mails and text messages. So many of your messages start by saying you hate sending electronic communication, but you don't want to bother us with a phone call. Smart people you all are...I don't feel like talking! But your texts and messages are GREAT! Sometimes when we are feeling really down, we go back and read some of the messages we have already received. It's just so nice to know that people are praying for us. And it's so nice to know that people think we are strong and courageous because right now, neither of us feels strong or courageous.

Tomorrow is D-day. I don't know what Nic's decision is. I'm not sure that he knows. We are just enjoying our weekend allowing whatever emotion is with us at the moment to be shared. While I have no idea what God's plan is for us, we truly were blessed with a beautiful weekend to share as a family. Hopefully you have been doing the same!

Love, hugs and kisses,
Dana

October 6

I sit at the computer with a glass of wine and an empty head. Nic is behind me watching Iron Man and eating grapes. Eleanor is sleeping and Cabo is annoying the snot out of me. It's a typical Wednesday night. Right?

Today was our second MRI. Most likely, it will be our last. Nic's disease has progressed from the left side of his brain to the right side. It is progressing down to his brain stem. Even as I type, it seems unreal. The last 12 hours. A nightmare.

Nic has stopped treating with Avastin, it's no longer effective. We have exhausted every option in the oncology department. We met with the incredible Dr. Howard. Dr. Howard, although modest in my opinion, is most likely the 2nd best Nuero-Radiologist in the nation. Retreating with radiation is very uncommon. Retreating for a 3rd time is unheard of. And for those of you counting, this would be Nic's 3rd time. Dr. Howard said he would retreat Nic. It's an option. But it is incredibly, incredibly, risky. We listened to all the risks. And all the possibilities. Radiation would buy us time only. After 6 months or so, we have no idea what would happen. There is not enough information to even forecast what could or might happen.

If we don't treat with radiation, we could possibly be looking at 3 - 6 months. Possibly. Who knows. The amazing Dr. Howard basically told Nic he has a pissed off tumor. It's aggressive and volatile.

Right now we are weighing our options. Treat with radiation or not? There have been many tears shed and hugs and kisses exchanged. Yet even as I type this, I don't believe it. I don't believe, what we knew was going to happen, is happening. When does this sink in? And when it does...how do we move on?

Nic, of course, is amazing! Amazing beyond words. We are going to take the next few days, enjoy our beautiful family and figure out what the hell we are going to say on Monday when we return to Madison. We appreciate all of your thoughts, prayers and concerns over these last months and years. Tonight, change your prayers. Pray for us to have the courage to decide what we want to do. To make that decision and to not look back. To have the courage to wake up tomorrow and figure out what is best for Nic. It doesn't matter what I want or what you want. This is what Nic wants and our support for whatever he decides. I know everyone wants to help or wants to know what to do. Please, for now, just think of us as Nic weighs his every option. The time will come when we need armies, swarms of people. For now, just say to yourself, Whatever Nic decides, let it be the best option.

It's beginning to look a lot like...Halloween!

I had this idea the other day of something I wanted to make for my front door. After a few weeks, I finally sat down at the sewing machine and cranked out this little diddy...

I'm still having a hard time getting it to stay on the door, I need to think of another way, but in the end, I think it turned out darn cute.

The next day, I received a Pottery Barn catalog in the mail and opened up to see this:

For $29! Mine cost FAR less than that AND I think mine is more cute :) Wouldn't you agree!

What was that? Did you hear that? Etsy, I hear you!