Friday, November 13, 2009

Best laid plans and all that.

This has been one full week.  Yes, indeed.  Thursday and Friday were totally full.  What?  Those two days don't constitute a week you say?  Well I say OH YES THEY DO.

Tuesday I get a call from MD Anderson saying, "We're just reminding you of your appointment on Thursday for labs and blah blah," and I say, "Well, we're starting interferon that day too, right?  I mean, I've got my whole life planned out for starting interferon so that is what's happening, right?  RIGHT?"  The appointment calling lady had no idea what I was talking about so she calls Dr. H.'s nurse and she says, "I'm not sure, let me talk to him and call you back."  About an hour later she calls back and says, "Rachael is just coming in for an assessment before she starts treatment and then we'll start on Monday."  Ohhhhkay.  Again, everything planned out already but I can go with this.  After all, it means I don't have to go home and pack for a month because I have a whole other weekend at home which is nice.  On the bad side, it means I have to drive to Houston Wednesday night and turn back around for home on Thursday and then go back again on Sunday.  But that's okay because hey, it's a whole weekend at home!  Including Friday when I can get all packed and relax and it will be so nice (this is ominous foreshadowing, by the way)!  That was especially good news because I had been feeling not well and a couple extra days to relax might help me feel better.

So we get to the clinic on Thursday and it seems that our decision to do the trial of interferon came as a bit of a surprise to them.  I want to tread carefully here because I know Dr. H. reads this blog so I won't use all caps and use creative language when describing my frustration but I had felt pretty confident that I had informed them more than once of our decision and it seems that this appointment might have included more than just some blood work if there was any protocol that needed to be completed before starting.  But when I get there I guess it suddenly became real to them and so they had to call in a bunch of favors and drag people over who weren't even scheduled to work the clinic that day to get Rachael into all the other places she needed for tests that were prerequisites for the trial.  Bottom line, I thought we would be leaving for home around 2PM on Thursday and was informed around noon that we had appointments scheduled for the next day.  Furthermore, to make sure she got everything done, "Why don't we just delay the treatment for one week."

Let me reiterate - my whole life is planned out already for this month!  (See that, I went bold instead of crazy caps.  Restraint!)  My husband has changed his work schedule.  We have plans for when I'm supposed to get back.  I understand there may be complications that might delay us anyway but I don't want to guarantee the delay from the outset.  And why didn't anyone figure out I was going to need this stuff before I showed up?!

So, in the past two days Rachael had her pupils dilated and was examined by an opthamologist, she had a lung x-ray, an EKG, an echocardiogram, a CT scan and a PET scan.  And because of said favors and doctors being called to the clinic there was a lot of waiting.  And normally I'm really okay with waiting but I guess the combination of being totally unprepared for the extra appointments (the ONE time I don't bring the DS or even books!) and feeling increasingly more sick and the lack of sleep because of being sick I did have one not-very-proud moment where I threw a little temper tantrum with tears and everything.

But we got it all done and we can go ahead with interferon on Monday.  I sorta missed out on my "relaxing Friday" though.

Now for the cool stuff that happened.  We got to meet another little Melanoma Warrior, Chloe and her mom Missy.  I've mentioned Chloe before here and though we didn't have much time together it was really fun for the girls to meet.  Chloe is an amazing wealth of information and her mom is very encouraging.  She said several times, "Once all the testing is over it gets really easy."  Let's hope Rachael's experience is like Chloe's was!

The other amazing thing we got to do is spend the night at the Ronald McDonald House.  This place is FREAKING AMAZING!  Let me just say, I hope I have visitors this next month because to keep the greatness that is the RMH to ourselves would be a darn shame.

I have so much more to share but that little sickness I was feeling a few days ago has turned into a full-fledged kick my butt illness.  So, I've taken my newly acquired antibiotics and I'm going to go to bed.  I will start updating more again now so I'll fill in the rest of the week - which had some truly amazing moments, over the next few days.

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