Friday, May 4, 2012

Halfway done!!!

Today, after 3 days of blood draws, insurance snafus, "funny looking" white blood cells, and lots of debate, I am getting my fourth and FINAL dose of the Red Devil and Cytoxan. Woo freaking hoo!! I am officially halfway done with my chemo. I get a three and a half week break then start up on Taxol.

  My fabulous NP Jennifer reminded me today of the side effects I will experience with the new drug. Pros? Less nausea. Which means no more expensive Emend prescription to fill.
Cons? High chance for allergic reaction. So, with that is the need for pre-meds which means steroids. And I so love steroids that make me crazy and swell up and hungry all the time. But I will trade the nausea for that any day!
Another con? Treatments will take longer because they start out with a small dose of the chemo and titrate up as I tolerate it.
And yet another con? Pain. Joint pain and chest pain starting the night after the day of chemo. Good thing I saved me some Dilaudid from my surgery!
  As soon as I get my schedule for the next 4 treatments I will be looking for side kicks to join me on those long days and keep me entertained. So let me know if you are interested in spending a boring afternoon with fabulous me and my drugs!

As soon as we are done here today, we will head home to finish laundry and start packing for our trip! We leave KC on Sunday for sunny Florida for Ethan's wish trip courtesy of Make-a-Wish! A wonderful, fantastic organization that really does make dreams come true! Thanks to E's wish grantors Marita and Stephanie, a very special blonde girl will be at our house on Sunday to see Ethan off. No, not Taylor Swift, his other fave blonde gal-think Prince Charming and glass slippers......

We have all of the bald kids stuff in a pile that we know has to go, now it's just a matter of what goes in carry on, what gets checked. That ought to be fun. "Why yes Mr TSA screener, that little bald kid really does need all that shit to survive-and we went ahead and added in a few more items-namely the Benadryl- to make the trip more enjoyable for all the other passengers too!". I can't wait to see the look on everyone's faces as we wheel up to the gate looking like the Clampits of the special needs world! We are bringing Stinky's car seat too because I have no desire to wrestle with his skinny ass for a 3 1/2 hour plane ride should he decide to get squirrely.

The plan is to load him up with some Benadryl, Sudafed, pop him in his car seat, and slap his earphones in blaring the lovely sounds of his blonde girlfriend and fly the skies. You know what they say about the best laid plans, and it is Ethan Rawley after all.....something is bound to go awry. Maybe he can ride in the cockpit with the pilots???

As for me,and my plane ride fears....I will be popping an Ativan or two and waiting for the beverage cart to make its rounds. They may need Ethan's wheelchair and one for me by the time we land!

As far as our itinerary, Ethan has a date with Cinderella Monday at Magic Kingdom and we will spend the rest of the day there. Then we are planning Hollywood Studios and Epcot on Tuesday. Sea World on Wednesday. Universal Studios and Islands of Adventure on Thursday and Friday if needed. We really want to try to hit Gator World on Friday if we have time. We will be staying at the Give Kids the World Resort, a place for only wish families, and caters to kids with handicaps. The resort itself has tons of stuff to do between two pools, an arcade, a train, a mini putt putt course, a boundless playground, movie night, a fishing pond and visits from the characters too! So if The two bald people get a little worn down, we can always just hang out together at the resort and have plenty to do and send the crazy ride peeps to the parks! Oh, and did I mention pizza delivery and ice cream parlour open til 11pm????

Brian has been released from Dr Saterlee back to full duty on the 13th, but he still wants him to continue physical therapy for a month to help get his strength back. He is about 98% right now, and Dr wants him at 110% before he can go back to lifting and working out. It will be about 4months before the doctor thinks he can hit the gym again. Looks like it's cardio for him in the meantime. The good thing is he can start working off-duty again, which will offset my not working full time.

 I worked 21 hours last week, and an 8 hour shift this week and man it felt good to be back in the land of the living and working! And of course all the laughs that ensue when I'm back in the NKCH!! My crew there is awesome and have happily been trading off working my shifts which opens up day shifts for me to get a few hours in each week. I wish I could go back to my nights, but just don't have the stamina right now to last that long for that many days in a row. I am thankful for my co-workers willingness to help me out and my supervisors to let it work out this way! You guys all rock!

Brian and I have been discussing how we could ever possibly repay all the kindness bestowed upon us, and we've been tossing around the idea of a Rawley rip roarin party sometime in the fall complete with his famous ribs and brisket and all of you!!! We will of course need some music too-debating on the spins of DJ Dave or something live like the Cherry Bombs or Perpetual Change.....we've got a couple "ins" with those three, and will have to see what we can afford! We really just want the opportunity to extend our thanks and gratitude to all of you who have stood by our sides and held our hands, held us up in prayer and held us together during this stretch of speed bumps on the twisty, curvy, hilly highway of our lives! Please know how much we appreciate each and every one of you!

Gotta run. Gotta go pee out the Red Devil and get going on my last dose of Cytoxan. Lets get this show on the road, I gots lots to do today!

Watch FB and the blog for updates from the happiest place on earth......

1 comment:

  1. You crack me up! Despite everything, your sense of humor is still rockin! I love it. Have a blast on your trip!
    Amy H