Short intro about the blog

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

Thursday, February 23, 2012

The Yellow River

Things are getting better!  Adam's chest pain is gone, praise be to God.  We're still not sure what it was, but the doctor suspects it might have been a bad case of indigestion.  We are now fully armed with Tagamet in case it happens again.  Adam is up to half of his target dose of the antineoplastons, and seems to be tolerating the medicine really well.  He has been a bit sluggish today, but then again so have I so it might not be the medication.  Fatigue is expected as he climbs in dosage, however.  But, the hardest thing for Adam to cope with right now is the urinating.  When he first started, the nurse said, "You will pee a lot."  I told her today that in future she *might* want to be a bit more specific.  "A lot" led us to believe that he may be going more than usual during the day, with a couple of wakings in the night.  What she should have said is, "Imagine you are pregnant with quadruplets.  Now imagine you have been forced to drink 6 cups of coffee in one sitting.  And now a large child is jumping on your abdomen.  This is how you will feel every 30 minutes all day, every day, through the night, regardless of where you are."  Adam literally empties a full bladder nearly every 30 minutes.   Lucky for him, he's a man, so he has been equipped with a 3-liter urination container for easy through-the-night depositing (he actually fills it twice before getting up in the morning).  He keeps it next to the bed and just goes when he needs to.  I don't know how women on this program manage.  Getting up twice every hour, having to disconnect the pump from the charger, gather up all the tubing, walk to a bathroom, collect the urine in a special collector... unimaginable.  But, even though Adam might have it a bit easier than others he is pretty tired nonetheless.  This totally beats nursing a newborn.

The training is now going surprisingly well.  I graduated to "bag-changes" yesterday, and the nurse let me know that she has never had a patient changing bags after only 3 days of training.  Apparently I'll get my trainee-of-the-month sticker shortly, LOL.  After a bumpy start, I'm really getting the hang of everything.  I disconnect Adam in the morning and flush his catheter.  Then he's "free" until we get to the clinic.  I get the previous day's stats off the pump, then clear it.  After Adam has had his doctor visit, I do the calculations needed to program the pump for the new day.  Then I prep the bags.  Before Adam is plugged back in, I sometimes have to draw blood for labwork, or change the tip on the catheter.  Then he's flushed and hooked back up to the tubing for a new day of medicine.  I'm getting to the point where I can prep the 2 bags in less than half-an-hour.  Thank goodness, because he will actually need 3 bag changes a day once he's up to full dose.  I think we can pretty much forget about homeschooling while Adam's on this program.  And eating meals.  And wearing clean clothing.  I thought I had lowered my standards quite drastically after #3 was born, but hey that was a PICNIC compared to this!  If we survive this treatment program with our sanity intact, I think we can just about handle anything.

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