Short intro about the blog

This blog is about our journey to healing with Grade 3 Anaplastic Oligoastrocytoma

Saturday, February 25, 2012

A Speed Bump

Annoying.  After two pretty good days, I'm finding myself mildly annoyed.  Okay, maybe really quite annoyed.  We still have to go into the clinic over the weekend so the nurse can check his vitals, get a blood sample, and for Adam to have a consult with the doctor.  However, on the weekend, we don't get to see Dr. Barbara.  We just get a visit from the "weekend" doctor, whoever it may be.  They rotate, I guess.  Well, the doctor this morning was very nice, but told us the direct opposite of what Dr. Barbara told us yesterday.  So, now I'm annoyed.  Adam has been doing remarkably well.  They have been able to increase his dose by 40ml every single day since he started treatment.  That is not always the case with every patient, as often they have reactions or severe side effects that require a slower increase in dosage.  But, with Adam he's just flying through.  And, even more remarkable, at this high a dose nearly everyone requires a steriod to reduce the side effects, but Adam has not needed it yet.  Really really good.  So, today we were prepared to go up again.  Yesterday when we met with Dr. Barbara, she was concerned about dehydration.  Although Adam had drank 11 liters (yes that's right) of water, he had excreted 12 liters.  His weight had dropped by 2 pounds, so Dr. Barbara explained that he is probably dehydrated.  She recommended that we only increase the dosage by 20ml on Saturday just to be on the safe side, but to keep an eye on his fluid intake and weight.  So, Adam has been drinking and eating like a champ and polished off a massive dinner last night.  He drank even MORE water this morning to make sure his weight was back up.  He still came up a bit short on his fluid totals (intake was 12 liters, but output was 13 liters), but weighed in at a much healthier 155lbs. this morning.  But, the substitute doctor wasn't happy.  She thinks that Adam is retaining water.  What??  He excreted more than he took in.  He can't possibly be retaining water.  What the heck is he retaining?  His weight gain can be easily explained by the mountain of penne bolognaise I forced him to eat last night.  But, she refused.  No increase in dosage.  Fume, fume, fume.  I was really nice, very very nice.  But, I was steaming behind my smile.  He was trucking along so nicely, and was expected to reach his target dose on Wednesday.  We were hoping that would mean we could go home Thursday.  Now with no increase, that means an extra day.  I could totally understand it if he was suffering from side effects, but he isn't.  He feels great.  Fume, fume, fume.

But, I suppose the good news (delivered through a tight-lipped grimace) is that I don't have to do 2 bag changes today.  With the expected dosage increase, Adam would have needed 3 bags of medicine over the 24-hour period.  That would have meant a bag-change at 3:45pm (no problem) and a second change at 11:45pm.  That's pretty late for me.  In fact, it's awfully late.  And I would be *starting* the bag-change at 11:45pm, which would then require at least 30 minutes of bag-prep before I could hook him back up again.  Yikes.  I guess it's not a bad thing that I get to postpone that little nightmare for one more day.  Gradually, once we're home, I can move that back a bit so I'll be doing the nighttime bag-change at a more humane hour.  But, with the clinic's schedule (they don't open until 9:00am) the late change will be unavoidable as long as we're here.  Another reason to get homeward as soon as possible!

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