Friday, June 26, 2009
TGIF and the Mother-Lode
Morning Everyone...Man! We had another long, long, long, long day yesterday. What make it more difficult is that Brenda is so fatigued. It was the first day after chemo and over the next several days she will be at her lowest as far as energy and resistance to germs are concerned. She's up for an hour or 2 and then has to take a nap. The good thing is that she's not in any major pain, she did mention, however, that she was beginning to have a sore throat, and her saliva is thicker, her mouth is dryer, and her skin feels a little sunburned...that's what we expected...they are really giving her high doses of radiation. The good news is that she has nothing else to do but recover and heal. We are so very thankful for everyone and everything that has led us to MD Anderson and will lead us through this journey to the CURE.
OK, so here's how yesterday went...just put yourself into this picture when you are so tired you can hardly stand up. We began with a 10:00 appointment with Dr. Hong. So like good patients and their nurses, we showed up early to ensure we didn't back up an already loaded health care-system. Maybe that's our first problem! Michele...this next part is going to drive you out of your mind...we waited...and waited...and waited...and then we waited some more. The chairs are lousy...no recliners...Brenda just wanted to lie down and I can't sit in those crummy chairs for a long time because I have a bad back. We weren't having any fun at all!!! So finally after an hour and a half, we asked where we were in Dr. Hong's schedule. Guess what...the intake folks at the desk forgot to mark us that we had arrived!!!! GRRRRRRRRRRR!!!! I wanted to Taser someone but I'm trying to be a good nurse and it's hard to continue your nursing duties behind bars at the county jail!!! The appointment with Dr. Hong took 5 minutes since Brenda is OK symptom wise right now. We talked to Mary and Thelma about trying to condense the waiting and spreading out the appointments so Brenda can get a good nap in. Bren had to get a Nulasta shot yesterday but we worked out a system that she didn't have to wait for an hour for the dang thing...that's what we're talking about!! I also suggested to Mary that we schedule Brenda's blood test a day BEFORE her first chemo day so we didn't have to make that first day any longer than it already was. You know...I just don't see how folks can go through this alone.
So we got to go back to the apartment and Bren dove for the couch...she was in zzzzzz-land before her head hit the pillow! We just had enough time to eat and then have her nap a little more before we headed back to the clinic for the Nulasta shot and radiation treatment. Now you might think that should be fairly easy and if you think on a small scale that might be true...but this place is HUGE and things are spread out all over the place. So sometimes to maximize Brenda's energy we go in 2 different directions to save her evergy. Today she went to the 10th floor pharmacy to pickjup the Nulasta shot while I went to the 1st floor to drop off our "patient supply" request form. We then met on the 9th floor where Thelma gave her the shot. From there we headed down to the basement for her radiation treatment. On the way to radiation we stopped at the 2nd floor pharmacy to pick up more heparin flush syringes that we had ordered. Off to radiation...
Yep....you guessed it...they were running LATE!!! Lord help us! I think they got a huge discount on those horrible chairs they have all over the place...they're in the radiation department as well! So there we sat for another hour waiting to get in for her treatment. So I used that time to go back to patient services to get the PICC line Heparin caps that we ordered. Guess what....they couldn't find the order that I had dropped off an hour before! It just was a trule disjointed day for everyone...we were falling through the cracks everywhere. You know this is really unusual for this place as large as it is. They truly do an amazing job when you think that they are treating 4,000 patients a day.
We finally got home around 5:45 PM. Man! What a week this has been. Whew!!! Today is a piece of cake...we only have Bren's radiation appointment and that's at 2:30 PM. Emily said we could call ahead and see if they were running on time to try and reduce the wait time. We only live about 15 minutes from the clinic and they have free valet parking for the radiation patients right at the radiation center so that really, really, helps with time and expense.
We spent the evening staring at the TV. I rented the movie "Inkheart" and we just let it watch us. Yep...Brenda napped...I watched. I just didn't have the umph to blog.
On a more energetic note...some of you VP's ...Rhonda, Koko, Michele & Karen, Karen M, Jodie & Donna, Bonnie P, Vicky & Callie, Paulette, Bonnie & Carter, Cathie & Evelyn REALLY want a blow-out CURE party, don't ya?. Hell...I can't blame you at all...we do too! Brenda hit the mother-lode of cards yesterday and MAN!!!... just about all of them had $5.00 in them to play the Mega Million Lottery! WOW!!! How cool is that. We just laughed and I wondered where the nearest store was that I could use this win-fall to get some tickets. You all are just wonderful for helping us have so may dreams of the future. We decided to spread the load out a bit to keep the excitement going and we'll buy some each week. You are so very wonderful of doing all this. We truly have the best village going! Kisses all over your face...if that's too personal...how about a big hug! Koko and Michelle...we didn't win with the tickets you sent...but we'll keep trying. This will be fun!
I think that about covers it for today...have a wonderful Friday. I know some of you are on vacation or are just beginning your trips. Take us along in your hearts while you're enjoying all the great places you're visiting. We'll be enjoying them right there with you. Send us some pictures and we'll post some of them on the blog. I don't see why the village can't come along!
Nurse Dee and Pooped, Napping Chemo-sabe