Short intro about the blog

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

Saturday, February 18, 2012


Wow.  The past two days have been just... wow.  So much to learn, it's almost frightening.  On Friday, we had our first day of training, and had so much stuff thrown at us in just a few hours.  Adam got hooked up to the pump and medicines for the first time, and they did a "testdose" to look for any acute allergic reactions.  He did fine.  Our training nurse Gina showed me how to change his dressing every other day.  This will be indefinitely, as long as he has the catheter in.  She also showed us how to flush the catheter and how to inject Decadron in case Adam suddenly has a bad turn, in which case I would have to get a steroid in him STAT.  We will have two weeks to learn everything.  I have no idea how the pump even works yet.  That will come later.  We were just so amazed at how many supplies this new lifestyle will require.  We were given a huge box (like diaper box-sized) filled with latex gloves, alcohol wipes, syringes, needles, vials of Decadron, tubing, pump charger, etc.  And that's only a 2-week supply.  That doesn't even include the giant bags of medicine.  Adam has 2 bags of medication that he has to lug around with him all day, including the pump.  It is actually really funny seeing him standing in the middle of the living area with this black camera-bag over his shoulder.  I have to keep resisting the urge to say,"Put your bag down and make yourself comfortable!"  The larger bag is similar to those IV bags they hook you up to in the hospital, and there's a smaller bag as well.  He will be going through at least 1 or 2 bags a day.  So you can imagine just what 30 of those bags would look like for a month's supply.  Where on earth are we going to put this stuff?!  Our house already looks like someone lifted off the roof and emptied a Walmart into it.

We also had a meeting with the nutritionist, which was great.  Adam has been losing so much weight, and he weighed in at an alarming 147lbs. yesterday.  He was 175lbs. in October, and he was lanky  then.  We told her what we had been eating, which is great, but just not enough calories to sustain a 6-foot male.  She estimated that we were only consuming about 1200 calories a day, when Adam needs around 2400.  We were both so surprised.  We eat SO much food.  But, in reality it's about 75% vegetables, which have too few calories.  Giant bowls of vegetable soups, humongous salads, and piles of fish, porkchops and chicken just aren't going to cut it.  So, for the sake of Adam's health we need to add in some new foods.  He will be eating more nuts and seeds, and we will be adding more cheese and yogurt back in as snacks.  Of course, the quickest way to put on pounds would be to eat wheat products, but he can't do it with his allergy.  I've also read that when farmers need to fatten hogs quickly they feed them skim milk.  But, I think Adam is happy with the coconut milk for now.  He can go back on cow's milk when we get back home and he will once again have access to raw milk from the farm.  I learned a lot from her presentation about foods and calories.  But, it was almost comical to see it from Adam's perspective when he needs to gain weight.  There would be a photo of a croissant or scone on one page with a full 5 course meal on the other page.  It would show how the calories were similar.  For someone trying to lose weight, she would tell them,  "Look how much food you could have instead of that scone for the same calories!"  But, with Adam it was, "Look how many calories you could get from just one little scone!!"  I would like to point out that *I* haven't lost any weight on this new regimen.  Not that I was trying to, but I was thinking if I lost a few pounds at least my clothes would fit a bit looser.  No chance.  Like most women, my body has decided that I will never again see my highschool weight even if I end up on a deserted island without a single morsel of food for an entire year.

Speaking of being a woman, I did notice something interesting last night.  For the next 8 months, Adam will now have to carry a somewhat large bag of fluid with him at all times.  He will need to drink tons of extra water due to the extremely high sodium level of the medication.  That means he will need to urinate constantly, including several trips to the bathroom during the night.  The most common side effects of the antineoplastons is extreme fatigue, depression/moodiness, and occasionally nausea and loss of appetite.  That's right ladies... for the next 8 months, Adam will be PREGNANT.  Bwah-hah-hah-hah-haaaaaaaaaaaaaaaa!

1 comment:

  1. LOL!!!! vanessa!! Your sense of humor is awesome!! Hmmm...... resisting the urge to "congratulate" Adam on his "new bundle of Joy" although really, that sort of IS appropriate!