March 1, 2013...It's on!!!

     Today is the day!  They are doing the simulation for radiation and later in the afternoon he will start his first chemo infusion.  He is getting the chemo drug, Cituximab.  Supposedly it will not make him as sick as the other chemo drugs.  The chemo doctor says the worst reaction to the drug that most people complain about is an acne like rash that he will get but they can treat that pretty easily.  With the radiation they are getting his mask made today, which will be the longest he's in the mask, getting him lined up on the machines and marking him.  I thought they would tatoo him, that's what everyone else has told us but they didn't, instead they put clear tape over lines made with permanant markers.  That tape is going to kill him when it comes off because there is no way it's coming off before it has to!  They did give him Ativan to take before he goes in for the simulation or any radiation treatments if you are clausterphobic.  Don't make the mistake we made, though, I gave it to him 15 minutes before his appointment because we figured it would take about 20 minutes to hit him so it never hit him until about 1 1/2 hours later.  Always take it 1 - 1 1/2 hours prior to the appointment.  They are usually on time for radiation and you don't wait long if at all.  Now, for other appointments that isn't necessarily true.  We've noticed that they're usually behind on most other appointments so if you are coming to MDA be prepared to wait a lot.  That's just par for the course.  Bring books, magazines, ipads or computers.  There are lots of places to get snacks, drinks and food, too.  They have a trolly that comes aroun, as well, but I've only seen it once.  I'll have to post soon all about MDA and the facility because it's great here!
     So, the simulation is complete, we met with the radiation oncologist (and a team of about 6 doctors that all came in to stick their fingers down Warren's throat...bless his heart), a class on the side effects of radiation (where an old man called me a heifer 3 x's because I leaned over and told Warren he better take his laxatives and stool softners because I wasn't given him the enema they showed us he would have to do if he didn't take the meds regularly and when the old man herad me he yelled, "You heifer, you heifer, you heifer!"  Absolutely hysterical!!!!!  I'm not sure if he was joking or serious but I have to believe he was serious because he never said he was joking or said anything else to me.  I love it!!!!  Made my day!  Warren was so loopy on the Ativan he didn't pay much attention to it but laughed a little.        
     After all of those appointments we ate lunch, headed upstairs for bloodwork and checked in to wait for his chemo.  We did wait several hours for his chemo but whatever.  That's not a big deal for us.  It's not like we have anywhere else to be here.  They finally called him for chemo, got him all hooked up and told us it was going to take about 3 hours.  Whoa!  We weren't expecting that.  I should mention that they went over the side effects with us again before the chemo and this time the list got longer than before when they told us the worst side effect of this drug, Cetuximab, was an acne like rash.  Now the list included: headache, nausea or vomiting, acne rash, trouble breathing, fever, etc..  Well, there were no reactions right away, the nurse was great, and we passed the time watching TV and eating dinner.  He was hooked up to an IV in a small hospital like room.  It was pretty comfortable.  We left around 9:30pm or 10:00pm and went back to the hotel.  At about 2am Warren woke up having to go to the bathroom, throwing up and a really, really bad headache and the chills and fever.  That lasted all night through the next day.  I called the doctor the next morning to get meds called in because we figured he'd be fine taking Advil, which he clearly wasn't.  Note to self:  always had the meds called in, picked up and ready to use before you need them just in case.  Getting the meds was a nightmare the next morning.  Since we had just gotten there and wasn't really that familiar with the area I asked the on call doctor to call them in to the CVS that I had seen downstairs from our hotel the day before.  Big mistake!  When I walked down to the pharmacy to pick them up they were closed!  So, I called MDA back told them what happened and they told me I could pick them up at any CVS so, I got the car out of valet parking and found the nearest CVS that was open.  Bye the way, this is Saturday morning.  The pharmacists at that CVS said no you couldn't just pick them up they had to be called in to that specific pharmacy.  On the phone I got again with MDA and asked them to please call them in there.  It took about 45 minutes and two call but I finally got the meds and went back to the hotel and gave them to Warren.  It took about 3 days for him to feel better.  They did start him out with a double dose of the Cetuximab for the 1st treament so hopefully he won't get as sick with the others that will just be once a week.