You Can't Always Get What You Want...

But you just might find, you get what you need (or so the Stones said).

Well, it's official...I got the dad blasted control arm. I have to admit I was very, very upset, shocked and disappointed when they announced what the computer generated choice for me was to be. BLAH! Here I was holding off treatment all these years because genotype one doesn't have a great SVR (sustained viral response - it doesn't 'hold') to the the current standard therapy...something like 40%. I have been waiting for something more effective to come along...something like the protease inhibitor in this study, where my chances of SVR would rise to 60%....and the stupid computer spits out CONTROL ARM for me?!

The nurses tried to console me w/breaking news that early reports coming in from the study are showing serious additional sides in some patients (such as anemia, headache, stomach distress & something I can't recall) from the Boceprevir, and now Schering has added 2 more arms to the study to test some other angles. Margee and Sayde (my clinical nurses) seem to think the control arm might be the best one, after all. Afterall....I DO still have that 40% chance, right?! AND if the virus is still detected after 6 months of the standard txt (interferon/ribavirin), they'll kick in the new drug (PI - Boceprevir) for another 6-7 months, to give the hep c an extra heave ho! Plus my body will have had time to adapt to the other two drugs before adding in a third...should be a good thing, too, right?

Oh well, after shedding a few tears of disappointment, talking w/my husband via cell phone, and generally getting over the shock, I decided to push forward. Like my sweet almost 8 year old Emma said to me, whilst she's patting my arm and giving me a little hug, "Let's think positive, Mama!". What a darling....think she's heard that phrase a bit around our home? ~smile~ Leave it to her to help me get recentered.

Emma and I went through the txt orientation together (her insistance) The nurses were very supportive and even gave her a pratice redi-pin (which she had lots of fun using) and a weird piece of strap-on 'fake skin' that she could bring home. She has been practicing on all her lovies and dollies ever since ;)

So, now was the moment to give myself the injection. I gave a bit of tummy roll a pinch, hesitated (just thinking to myself This Is IT) and then I sent all the dragon slayer into my body with a CHARGE!!!!

I felt lightheaded and the surroundings immediately felt a bit surreal or something. I was told this was not from the drug but an emotional/physical reaction to everything that was happening. I had to sit a moment to come back to myself. Nurses Sayde and Margee told me to take extra strength Tylenol and an anti-nausea when I got home, along with my evening dose of Ribavirn (2 @ 200 mg). Then, with all my new battle gear packed and a Rx for Ambien (sleeping aid) and Phenegrin (anti-nausea) we set off for home.

We stopped at the pharmacy, p/u'ed the Rxs (and an 'icee for Em) and then headed home. I was feeling ever so slightly queasy and a vague headache and fogginess, so popped the suggested meds and took a 2 hour nap when we got home.

All in all not what I was expecting wrt to which arm I'd get, but also I had been expecting the typical sides of flu-like symptoms, fever and chills....and got none of that either! In fact, the most telling side affect I've experienced up to this point has been the drowsiness caused by the anti-nausea drugs. Think I'll hold off on them since the queasiness I've felt has been only slight.

It's now Friday morning, and I've taken 8 of the Ribas at this stage and I'm happy to report I still feel just fine! Amazing! Let's just hope it keeps going like this:)

Hey, maybe it'll be like some sort of covert action going on in my cells that no one else is aware of until we announce 'mission accomplished' at the end!