April 18, 2011

• Just when you think you can predict the schedule…

  Posted by Stephanie  11:00am CST  from the apartment  Houston, TX

  I lead such an exciting life right now.  Okay, not really.  Not even close.  BUT, there are lots of things going on, some good, some not so good.  Let’s start with a medical update.

  I saw Dr. Benjamin last Thursday for a quick, in-between rounds check-in.  I’m not due for scans till after the next round, but I did have bloodwork and a chest x-ray before the appointment.  I was due to start another round of chemo just a day or two after that appointment, but my platelets were only 99k on Thursday, and they’re supposed to be at least 100k.  I know, I know, not a huge difference, but he wanted to wait a few extra days so that they could get a bit above 100.  My platelets have been dropping lower after each round (though nowhere near the low they used to reach), and the thought was that if they were higher to start with, they’d have a bit of cushion room for the next round.  The rest of my counts looked okay–my C02 dropped quite a bit after coming off I.V. fluids (as we knew they would) so I had to up my oral soda bicarb intake to 32 tablets a day.  I also continue to take potassium and phosphorous.  Yum.  Aside from the counts issue, though, the doctor says I’m tolerating this treatment beautifully.  Hooray.

  During the appointment I asked him how the chest x-ray looked, because even though it’s obviously not as detailed as a CT scan, sometimes you can still see what’s happening with spots of interest.  Though he doesn’t like to rely on a chest x-ray for definitive information, Dr. B did say he thought he could see some change (for the better).  Certainly the scans after the next round will give us the answers he needs to decide whether we do additional chemo or plan for surgery at that point.  He did say that he was leaning toward doing two additional rounds after those scans, since it looked as though it was starting to work.

  So, I left the appointment with labs on the schedule for Sunday and chemo tentatively planned to start this afternoon.  Dr. B wanted me to send him a reminder e-mail after my labs yesterday so he could take a look at them and make sure we were good to go.  I did, and received a surprising e-mail back a short time later saying that chemo for today was a no-go!  My platelets are actually sitting at 98–down from what they were a few days ago!  In addition, my white count, which was down somewhat last Thursday despite the Neupogen injections, has failed to come back up.  Dr. Benjamin feels as though I need another five days worth of immune-boosting injections, and is opting for Leukine, which works similarly to Neulasta or Neupogen, but works on more than one component of the white blood cell, hopefully leading to an increase in my white count that will hold.  The plan now is to do those shots M-F, take Saturday off (must have 24 hours off before chemo to avoid interaction), then chemo starting next Sunday.  Oof.  Nearly a whole week postponed.  Don’t get me wrong, I love the thought of being off the backpack for more time, but I hate the thought of putting off the start of treatment, because it just prolongs my time down here.  As it is, if we really do end up doing a total of six chemo rounds before surgery, each a month or so long, we’re looking at surgery not until the latter half of July.  Then with recovery time and the possibility of post-op chemo, I’ll be on treatment and down here in Houston through the summer and into the fall.  That’s a long time.  I’m trying not to look that far ahead, because that’s enough to depress anyone.  I’ll just take it one cycle at a time.

  I wish it were possible to use this extra time off to come home, considering I’ve only had a whopping THREE days at home since January, but sadly it’s not an option.  Buying a plane ticket last minute is nearly $600, and if we drove two days home and two days back, there’d only be one day to visit.  It’s been our plan for awhile to come home after this next round, and I hope that’s still going to be an option.  The fact that my counts are taking longer to recover and the need for these extra injections, though, make it tricky to know what’s going to happen following the next round.  Sometimes it’s nearly impossible to know when it’s safe to head home, and my medical team isn’t big on trying to predict those things in advance.  One of the downfalls of being treated so far from home!

  In other news, mom is back down here with me.  She flew in Friday morning.  Grandpa continues to be stable but weak, and is settling in at the extended care facility.  I know it was hard for her to leave him, but since it looks as though he’ll continue as is for the foreseeable future, she felt as though she could return to Houston.  My ten days of being down here alone were fine–I actually found lots to do and several different people to hang with–but it’s nice to have someone with me again.  I wish, of course, that Sammy could be down here more than he is.  Summer is coming soon, and then he’ll be able to visit with more frequency.

  It’s beautiful down here.  Sunny, warm, breezy….I find myself walking outside everyday and saying, “Wow, what a nice day!”.  If it could just stay like this, that would be wonderful.  It’s forecast to get even warmer this week–up to 90 already!–and for mid-April, that might be a bit much.  July, sure, I’d expect that, but it’s a bit too soon to be sweltering.  It’d be great if I could beat the heat with a nice dip in one of the apartment pools, but oh wait, this CVC line prevents that!  Boo.

  Alright, enough rambling for now.  Have a great start to the week!

  -Steph

  • 2:34 pm
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