Another Monday, another trip to Durham

Today was my 4th treatment.  Not that the 4th treatment is significant, but this was the first trip by myself and didn't have anything to crochet while I was waiting.  I happened to be between projects.  It may not seem like this is such a big deal, and I do love to read, but you have to understand the dynamics of a day at Duke and the Duke Treatment Room Waiting Room.

I arrive and check in for labs about 10.  After I sit down, I usually have less than 10 minutes to wait for my labs to be drawn.  I could pick up a book then, but would just have to put it down again, and I am always on alert for my name to be called.  After labs are drawn, I go down the hall and check into the treatment room waiting room.  The wait time here can be 1-2 hours or more.  I have to wait on my labs to get back and from those results my doctor determines whether the Nplate dosage needs to be increased.  There are people constantly in and out and any one of those people could be Dr. M with my counts.  Pagers go off, people are talking on cell phones, and Rachael Ray is cooking something or the women of The View are talking.  It's a very distracting environment and not conducive to reading!  When I've taken my crochet, it gives me something to do instead of just sit.  You can only play Angry Birds for so long and no one wants to sit and stare into space.  Then you're that weird person staring at everyone.  Needless to say, I have fresh yarn and a fresh pattern to begin!  And I got yarn for a project that has to be finished by March 11.  Very excited about that--these colors sat in the bin and YELLED at me to get them.

And so many people have been so kind and offered to go with me and I truly appreciate it, but I'm not ready for that yet.  That may sound odd to everyone but my parents.  I really do try to....not downplay the ITP, but not make it the driving force in my life.  I'm having to take a lot of time out of work, and part of me feels like if more people take time off work, it makes this a much bigger deal than it is--and this is maintenance therapy.  An emergency is different--I need/want support when I'm having urgent issues, because my urgent issues are a big deal.

Despite having a blog, my ITP is something I tend to keep close.  I think what I like most about the blog is I can just write.  I don't feel like anyone's going to feel sorry for me or pity me.  I don't like telling the same story forty-eleven times, so it's much easier on me than the phone.  If charted, my ITP history would look like a roller coaster with its good things and bad things.  Early on, I discovered how frustrating it is to have good news one day, bad news the next, and it's exhausting to relay all that to people.  My counts today were 244,000--in the normal range--YAY!--with the Nplate being the only medication.  This is really encouraging.  My dosage is going to stay the same for now, unless we see something different.

Double-Sided Post

Okay, the good news:  I went to see a new gynecologist today at Duke about the irregular bleeding that's been going on since the end of August.  She was awesome.  I was in and out in less than an hour.  She said, "This definitely isn't an issue due to your ITP, but how you're taking your birth control."  So, she is switching my pill and how I take it, and we have a follow-up in 3 months.  I am so relieved that she was able to tell me what was going on and also wants to check up on me later, not just go on my merry way.

The other news...Last Monday I got counts done and they were back down in the dumps: < 5 and I was having symptoms: blood when I blew my nose and mouth sores.  Dr. M told me to get to Duke right away and he would go ahead and start me on the Nplate.  So we're back to plan A...Or whichever letter it is.  We'll just have to keep figuring it out as we go.  I took one dose of dexamethasone Tuesday and it helped clear up my symptoms and didn't cause bad side effects.  We'll keep on keeping on, and eventually get it all figured out.

Surprising yet wonderful news!

This weekend has gone by very quickly.  Saturday was pretty much a haze of sleep and food.  Dexamethasone withdrawals weren't as bad this time, as far as being moody, but boy was it rotten!  I couldn't get comfortable, was hungry, my stomach hurt but things didn't taste right, couldn't think right, and didn't want to talk to anyone because I didn't know what I would say.  Jimmy said it was a lot like I had a big hangover.  I personally wouldn't know. 

Sunday afternoon we headed up to Durham.  Jimmy drove, which I was very thankful for.  We checked into a hotel we've stayed in before, and caught dinner and a movie with Patrick.

This morning we got up and went to the clinic about 8:30.  I started getting really nervous.  They drew my blood around 9 and we sat.  FOR AN HOUR.  I went to the desk again, they called Dr. M, and he said he was still awaiting my counts.  He said we could go wander around and he'd call my cell when he got the numbers.  A few rounds of Angry Birds and a meal at Chick-Fil-A later (gotta love franchising within a hospital), Dr. M called and asked where we were.  He told us to stay in the cafeteria and he'd be right down.  Dr. M came into the cafe and hands me the test results.

241,000 PLATELETS.

More than I had on Friday....without any extra meds.

I'm sure the steroids were probably still working on my body, but still...241,000.

So where does this leave all our well-laid plans?  Dr. M is content to let me get counts at home next week and not have to come in.  We'll keep an eye on counts and symptoms, like we have been.  If I get below 20,000 and start having symptoms, we'll start the Nplate. I have an appointment December 1st with him, so I'll have to be back in a month.  But for now, I'm not going to have to do the Durham 500 once a week, and that's enough for me.

God does answer prayer.  I have no doubt of that and I am beyond grateful for all of the prayers, love, and thoughts everyone has offered our way.  With my experiences though, I know that His answers to those prayers are not always the ones we want to hear.  And I know things can go the other way at any time.  I feel very hopeful though, and excited to see what the future holds!