Short intro about the blog

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



Wednesday, February 29, 2012

Missing Virginia

There hasn't been too much to post about before today, so I just haven't been motivated to write anything.  I've had a few moments where "psycho-wife" has reared her ugly head, and it was best not to post.  I have felt unbelievable pressure regarding this treatment, and my perfectionist nature has made me very difficult to live with.  As if Adam didn't have enough to worry about, without his wife rolling around on the kitchen floor yelling 4-letter words at the top of her lungs.  I'm afraid to admit that, yes, that was me this morning.  I had forgotten to disconnect Adam at 8:10am so that he would be able to have blood drawn at the clinic at 9:40am.  There has to be an hour and a half between the last dose of medicine and the morning blood draw.  I've forgotten twice, and both times we had to sit around and wait for ages before the nurses could do blood work.  I hate it when I forget important things like that, and frankly in this situation it's unacceptable.  I have to get on the ball.  There is just SO much to remember and SO much that Adam simply cannot do.  It HAS to be me.  And I'm fearing that I'm just not good enough.  So, I'm beating myself up a lot, and it's helping nobody.

But, other than my psychological shortcomings, today was a really good day.  Adam is scheduled to be discharged Friday!!  That means we should be pulling up outside our home late Sunday night.  I can't wait.  Dear Lord, please don't ever send us to Houston ever ever again.  Virginia is where it's at, people.  Mountains, sunshine, rolling hills, sunshine, friendly people, sunshine.... and oh, I almost forgot, sunshine.  I will be streaking Berryville on a daily basis in celebration of the sun's gloriousness.  Prepare yourselves.

The other good news is that Adam is at his target dose.  Dr. Burzynski himself has been reviewing Adam's case, and for mixed gliomas the dosage can be lowered and still be effective.  Adam is NOT on any steriods and has not suffered any fatigue at all.  This is nothing short of miraculous.  Many patients have ended up in wheelchairs because of the debilitating fatigue.  And everyone has to take Decadron to keep cranial pressure down.  Adam hasn't needed any.  Everyone is really pleased with how well Adam is doing so far.  And Dr. Burzynski has a prediction... he believes that Adam's tumor will be gone within 2 months, and after 8 more months of maintainance treatment, it should never recur.  I LOVE that prediction.

2 comments:

  1. THAT is an awesome prediction!!! We shall keep up the prayers for both of you!!! You are amazing and you WILL "get this!" and you have lots of support waiting for you here in SUNNY Virginia!!!

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  2. WHOOHOOO....STREAKFEST!!!!! Let's hit the park.....nekid! :-b

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