Weekend update

I don't know what makes me happier...that I am sitting UPSTAIRS writing this (on my new mini netbook computer) or that I'm sipping coffee that my husband surprised me with (apparently he snuck out of bed when I got in the shower - he rocks!)?


I'll tell you what doesn't make me happy. Spending the night with the Grafton Police Department and EMTs. And on Friday, that's exactly what we did.

Nicolas and I were up too late watching Grey's Anatomy. When I finally decided it was time to go to bed, we both ended up in the bathroom together, brushing out teeth. I noticed that Nic's hand was shaking. He tried brushing me off, but the hand turned into the foot, turned into the face. I tried to get Nic to the ground. His seizure lasted longer than normal, but still only about 1 - 1.5 minutes. He had a really hard time coming out of the seizure, which was what scared me. He still couldn't communicate with me and was breathing really heavy. That is when the next seizure started. I asked Nic if he wanted me to call 911. The scary thing is that he did want me to.


Within minutes a police officer was at our house. At this time, Nic's seizures had stopped, but the officer gave him oxygen which helped with his breathing. Seconds later, another officer came (3 or 4 in all - gotta love small towns!) and the ambulance.


In the end, Nic denied transport to Aurora. They told him they could try altering his medications to prevent another seizure. But we both agreed that we didn't want anyone playing around with anything. In hindsight, I feel like we should have gone. Perhaps the hospital could have given Nic something to help him sleep. It took him a really long time to get himself to relax enough to fall asleep. He kept feeling like he was going to have a seizure.

Saturday was a rough day for us. We were both tired and Nic was a little out of sorts. Mellissa, our CNA from Hospice, stopped by to go over all the paperwork and we got to update her with our fun night. It's nice to know they will be the ones for us to contact now. I kind of feel like I don't have to think anymore.

Nic and I were both in bed by 7:15 on Saturday night. Sunday morning Nic got up with Eleanor and I laid in bed listening to them talking and playing in her room. He sounded great!

That's one of the things about this experience...It's just a roller coaster. You are up, you are down, you are upside down, you don't know where you are going next. The most random things set me off! I've had a great morning and now, for no reason, I'm choking back tears and wanting to curl up and quit. To not be in control is so weird. And so I repeat to myself my mantra, "Just keep swimming, just keep swimming, everything will be OK." I take a deep breath and prepare for what this minute has in store for me.

Mixed Emotions...

...Big Flowers...yay or nay? I'm running out of options.

New Design, New Team

Has anyone else noticed I'm having a really hard time picking a new background for my blog? I just can't seem to find one that fits! Then I finally found one this morning...with the CUTEST garden gnome...and...well...it just wasn't proportionate! No one wants to see a garden gnome THAT big....not even me! Did you know I secretly love garden gnomes? I think I should resolve to have at least one gnome in my garden this year.

I digress. So I'm not happy with this background either, but enough is enough and I need to finish lunch and get back to work!

However, I did want to fill you in that we have finally chosen a Hospice provider! We are so excited - well, as excited as one can be about this type of thing - to welcome the wonderful staff of VNA to our team!

But seriously...I feel an odd sense of calmness about this. I think I'm just happy we were able to make a decision. I think I know that now we have the Hospice team on our side, I know I need to make less decisions. They are the ones now that will recommend what we do and how we do it. I feel like I can just kind of sit back and coast for a minute.

Until my husband reminded me that we should probably make funeral arrangements too. Damn, why is he so calm about all of this?!

Well, at least for today, we have one thing done and I'm not going to think about the rest of that list anytime soon....maybe next week.

Enjoy the new snow! Enjoy your loved ones! Enjoy life!!

No real updates

Last Thursday Nic and I met with two hospice providers. VNA - Visiting Nurse Association - through Aurora and Horizon Home and Hospice through St. Mary's. It was two very different experiences. Unfortunately, we aren't any closer to our decision than we were before. We have a third provider that we need to meet with that may be considered a provider...or they may just help us with some information...not sure at this time.

The whole experience is just incredibly overwhelming...overwhelming and numbing.

I finally got to see my fabulous therapist today. I think it really will help with my sleep problems. He says and I quote - you hold onto control like a bulldog. Hmmmm, I'm thinking I need to let go of some of this. I can't plan this. It is beyond my control. And while I'm going to try and stay strong, I'm also not going to try and fake it either.

The Helping Hands website is up and running and I'm just about ready to start accepting some help. While I can't control a lot of this, I can start getting organized. I need to feel organized. But...I don't really know where to begin. I don't know what I need. I don't know what I need from people. I just love hearing from you all. You have no idea how much I love the posts, the e-mails, the text messages. Knowing that you are all thinking of us just makes me feel so good! Thank you.

Nic continues to rock on. He's feeling great, doing great and just being Nic. I thank God for every moment like that. Perhaps I should go enjoy some time with my husband, instead of sitting on the computer!

Don't read...Ignorance is bliss...

But if you really want to know, then I guess you have to read. Today we had an MRI and what we have been fearing (dreading) for ever, is happening. Dr. Cruiser came in first (a med student, fellow, resident, what ever they are called) and gave Nic his neurological exam. He sat down and looked at Nic, or me, I don't know, and said, "Today's conversation is going to be a tough one. The MRI is not good". Ian and Steven came in next. While the spot where Nic's tumor is could be necrosis (dead tissue) the new, larger, tumor on the other side of the head is not. Then there is the other spot that was never treated with radiation which shows tumor. We never saw the MRI image...maybe it's for the better...but it sounds like just a whole lotta tumor.

Ian and Steven were incredibly surprised at how alert and responsive Nic is. Regardless, this tumor has a temper and things could start happening. Of course the frustrating thing about brain tumors is that no one can tell us exactly what is going to happen. They did say things like, 24 hour care, medication monitoring and hospice.

I've been mentally preparing myself for this moment for months. But if that's truly the case...if I was preparing, then why do I feel like someone knocked the wind out of me? Why, when Nic just asked me to take a nap with him, did I say No? No, because the last thing on earth I want right now is to lay in a dark room, alone with my thoughts?

We met with Stacy, the social worker at UW and she said she would start looking in to hospice facilities for us. Then, I guess, it's a matter of meeting with them and determining who we will go with. I know I want, and Nic wants, to stay home for as long as possible. But I don't want to be his caregiver. I want to be his wife. I've said that from day one. I'll let hospice help us through that one. It's hard, working in two different geographical areas. Our entire team is in Madison and we are here.

So....what can you do? Pinch me. That would be a good start. Pinch me and tell me that this is happening. It's not a bad dream and the worst thing I could do for my family is to hide from it. My fabulous support team is coming over tonight. Plan and wine in hand. They will help me figure out what I need, when I need it and then you can all figure out how I can get it. It's hard. Getting help from people. Because that makes it real. And I don't want it to be real. But it is. And I'm scared as hell to know what happens next. I'm scared as hell that I'm not going to make it.

But then I stop. I feel the tears of the last outburst trickle down my face and I take a deep breath. I know I'm going to make it. I've got Baby E and a team of family and friends that won't ever let us fall. And I've got Nic. I will always and forever have Nic.

I'm Back!

I never really went anywhere and it's not like I haven't had anything to say. I blog while I'm brushing my teeth. I blog while I run. I blog on my way to work. I just don't ever have the time to write said blogs.

I wrote blogs last night while I was awake. All night. I went to bed with Nic at 9 and couldn't fall asleep. I woke up with Eleanor at 10:45 and listened to, and tried to get her to stop, coughing for almost 45 minutes. And I woke up several times after that.

I'm pretty sure I know the cause of my new found insomnia...since I didn't sleep on Sunday night either. Nic's first MRI is tomorrow. His first MRI since October 6th. His first MRI since our life came screeching to a stop.

I keep telling myself that I don't care. I don't need an MRI to tell me things I know. I know that Nic is losing strength in his right hand. I know he stumbles and trips. I know he drops things. I know he can't remember things.

I know he's still here. I know he still talks to and plays with me and Eleanor. I know he still laughs. I know he still smiles. I know he still helps around the house. I know he still tries. I know he still hugs. I know he still kisses.

Heck, I drop things, stumble, trip and can't remember. I can live with that stuff. So while I know you have all done a great job of keeping the Terrones Family, especially Nicolas in your thoughts and prayers, but please, tomorrow as you wake up and get ready for your day, just remember Nic's big day. I sure will be happy when it's over...