We went about our usual morning routine at home and after dropping Liam off it was to the hospital for labs and my appointment. I rather enjoyed the distraction of several staff members being dressed up, it's not everyday that Raggedy Ann draws your blood! The staff in the Cancer Specialists office were all Disney villains! So fun! I was weighed in (only lost one pound in 2 weeks, boo!) and headed back to the exam room to wait for Dr T who arrived quickly and with good news, my numbers are still stable! I can move to half a pill every-other-day! Woah! He wants to see me in two weeks and if my numbers remain stable I can stop taking the pills all together! Woah! The thing I most appreciate about Dr T is that he anticipates what I'll ask him, so he covered somethings I was thinking about such as the likelihood my ITP will come back (1 in 3 chance) and what my options are should it appear to be chronic (scary), future monitoring over the next month/years and so on. I'm excited that there is a plan and that we are finally looking forward more long term but....
I wish I could tell you I felt all this reassurance and was worry free walking out of my latest appointment but I didn't. Thankfully I had to head straight to work so I couldn't dwell on it immediately but my mind found plenty of time to consider what my next lab results could mean. To sum it up quickly: I'm scared. I do not want to live with this. I don't want to wonder if or when it will come back, I don't want to over-analyze every bruise and bloody-nose. I don't want to have quarterly/bi-annual/annual monitoring. I want this to be over, simply over. Too bad we seldom get what we want in life huh? The cold hard truth is I have no control over this, chances are it will come back or is chronic and I will have to think about it long term.
This last steroid dose change has been really difficult on me physically too, I can tell when I don't have that stuff pulsing through me, suppressing my immune system, because I feel terrible on the days I do take it. I haven't had anymore bruising, which is nice, but I got a bloody-nose the other night and it hit both V and I to our cores. For one thing this was no ordinary bloody-nose, blood poured and proud from me, I could hear the fear in V's voice as he asked from the other room if I was ok. He wasn't really asking if I was just ok, I could hear the meaning behind his words; Is this more than a bloody-nose? Should we call Dr T? Are you as worried as I am? I can't tell you how thankful I was when the bleeding did finally slow and eventually stop. (It didn't bleed long enough to warrant a call to Dr T). I really don't want to go through that again.
And that is where I will leave it, not exactly ending on a high note but I will not continue with this pity party of one. You have to play the hand you are dealt, whining about it will do me no good. The biggest realization that has come of all this is what a miracle baby Liam really is, I believe in miracles more than ever as a result of all of this.
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