Posted by Stephanie  5pm  from the house!

I mentioned in my last post (the one prior to Sammy’s brilliantly funny entry) that I’d be putting up a lengthy and explanatory post soon.  After all, there is a lot to catch up on.  Well, sorry to say, this isn’t it.    BUT, it is an equally important post, because it contains all the info for a big, exciting, can’t-miss-it event that’s happening tomorrow night.

Many people have stepped up to help since we discovered the cost of my Pazopanib prescription was not going to be covered by insurance.  We’ve had people donate money, do legwork in researching whether we qualify for coverage assistance from the pharmaceutical company, and even organize benefits and fundraisers.  The first of these events is upon us, and it’s being put on by a very special group of friends.  Many of you will remember reading about the workshops I did with Synergy Education, including the leadership program I recently finished.  Well, the Dayton Synergy LP01 Leadership team has put together this shindig, and is generously donating the proceeds to Sammy and myself.  Here’s the details:

What: Cocktails and Contributions!

When: Tuesday, June 12  5:30-8:30pm

Where: A Taste of Wine–90 South Main St., Miamisburg, OH 45342

Cost: $10 at the door

What You Get: Your donation at the door gets you 1 raffle ticket and 1 glass of wine/sangria (additional drink tickets are available for purchase).  There will also be hors d’oeuvres, a live band, raffle and auction items, and a whole lot of people having fun!

An online auction and donation center has also been set up for the event.  Tons of great items are available to bid on, including a 1-year Family Membership to the Greater Dayton YMCA (valued at $856.00!), Reds tickets, a blue ray player, an iPad2, a 3-night cottage rental in Madeira, FL, and more!  Get on there now and get your hands on some great items.  If you aren’t able to attend, you can still participate in the online auction or make a donation via that webpage.  Check everything out here: http://www.32auctions.com/organizations/3930/auctions/4361

Cool, eh?  Wanna know something even cooler?  The group putting on the event arranged for Sammy and I (and Sandra, who’s part of the LP01 Synergy team) to meet up with journalist Jim Bucher, from WDTN Channel 2 and tape a TV segment for the event that will air a couple of times in the next 24 hours.  You can catch it:

-Monday evening (TONIGHT!!) during the 10 o’clock news on Dayton’s CW

-Tuesday (tomorrow) morning at 4:55am on the WDTN Channel 2 morning news

-The segment can also be seen online starting this evening by going to wdtn.com and clicking on the Bucher’s Beat link (under the news tab on the home page)

-Finally, I’ve been asked to come in to the WDTN station tomorrow afternoon and help with another plug for the event on LIVE TV!  Eek!  You can catch the live segment at 12:36pm Tuesday on Channel 2.

I’m so excited that I’m home and can attend tomorrow’s Cocktails and Contributions party!  If you’re in the area, don’t miss it.  For now, I’m off to rest–doing interviews for all my adoring fans (ha!) is quite tiring!  Later gators.

-Steph

Posted by Sammy 2:30pm from Home

Have you ever gotten into a fistfight with a garden hose? Roundhouse kicked a bucket? What about olympic style wrestling with a vine? Or a tree? I like to sum all of this up in a word: Tuesday. Yup. Except the bucket. That was a week or so ago. But you get the picture. Lots of people ask us how we are doing. While really breaking it down from emotion to emotion is complicated I suppose on the surface its less so. It pretty much goes like this:

Theres a tumor. It wants to do bad things to Steph. That makes me angry. I hate it.

There you go. Im angry. But I can’t take it out on the thing that is making me angry and I dont want to be angry to people (well maybe some people) especially not people who care about us. So what to do? Well when the garden hose refuses to wind properly, it has incurred my wrath. What I really am getting at is I find myself being angry over stupid stuff. I have to remind myself that iTunes not loading fast enough is not a global crisis. I keep finding myself going in circles not knowing what to do. Its a strange feeling of being mad, then wanting to go and do something to take my mind off of it but I have no clue what to do, where to go, whether I want company or solitude. Its just funky. Im sure its just a reaction. Processing every thing. Well it a stupid reaction and processing sucks. So does cancer in case I havent driven that nail into the ground yet. But Steph gets home today. Yay! So now I can bother her with my not knowing what to do. Or at the very least we can do some summer things together and enjoy her being home. This of course means I get to make a grocery run. But i have a list.

See when I am home alone, the fridge is, well lets say a little Spartan. Its not to say that I dont eat healthy food or cook. I do. But I tend to go and buy that stuff when i need it. I dont make big grocery runs. So the fridge is used to maintain a steady supply of man-food on hand and other stuff I get as I need it. Well my own personal Mogwai is coming home and just like Gizmo, Steph has rules. Only difference is I can still feed her after midnight. But is important we keep her immune system up and running.

This is what we want her immune system to do.

Sadly without proper support this is what we end up with.

So its off to the store with me to buy spinach for Popeye. Itll be nice to be home together. And starting the new drug will be an adventure. (We will discuss my feelings on the insurance/FDA situation another time). It supposed to turn her hair white, so thatll be fun. And in light of a friends Facebook comment that Im still laughing at…If this all works, but the chemo screws with her DNA enough to turn her hair white, Im not sure we can really rule out THIS:

Until next time,

Sammy

Posted by Stephanie  11:00pm CST  from a hotel  Little Rock, AR

Lots, I mean LOTS has happened in the last week.  I’ve been working on another of my always-lengthy blog posts for the past couple of days when I’ve had a few minutes of free time here or there, but I’ve come to the end of yet another day, and honestly, I’m just too wiped to finish it out!  But, I wanted to let those of you who might be out of the loop (or not on Facebook) in on the major points, and I’ll get the lengthier post on here as soon as I’m able.

So, here we go, the super-brief Reader’s Digest version:

1. Insurance denied coverage of the Pazopanib, because it’s FDA approved specifically for metastatic soft-tissue sarcomas, which I don’t have.  This makes me want to curse.  A lot.  The hospital is appealing the decision.

2. In the meantime, we have decided to have the prescription filled and pay for it out-of-pocket so that I don’t have to wait any longer to get started on it (it’s already been a week and a half since my appointment with him!). 

3. The kicker?  The medication is approximately $6200 a month.  Yeesh. 

4. After many phone calls and much confusion, I was given the green light to leave Houston.  Mom and I packed up and got on the road this morning, and are stopped in Little Rock for the night.  Eleven hours in the car tomorrow and I’ll be home!

5. An unbelievable number of people are rallying around Sammy and I after last week’s scan results and denial of prescription coverage.  In the last few days, we’ve learned of so many accounts, events and fundraisers being planned by our community of friends, family and supporters.  I’ll have a run down of them all in my next post so that everyone is in the know!

6. I’ve got a new addition to my alternative therapy regimen.  What is it, you ask?  You’ll just have to wait for my long post to find out!  I know, I know, I’m evil for keeping it secret. 

There ya go.  A lot of info, and yet not a lot, all at the same time.  The lengthy post that’s coming will fill in all the blanks, I promise.  Right now, it’s bedtime.  Gotta get my beauty sleep (ha!) so I’m prepared for the rest of our travels!

-Steph