One of the minor miracles is that Jared doesn't weigh 350 pounds! And if it weren't for some of the other medications and antibiotics making him nauseous, he probably would be. Jared was prescribed a steroid called dexamethasone to reduce the swelling in his brain. Originally he was given 16mg every day (4mg 4 times a day). Within a few weeks they started to taper his dose. Steroids can cause all sorts of complications if given long-term, so they try to get you off as quickly as possible.
He was tapering his steroid when he started to feel "off" in November-December. The radiation doctor just figured he was tapering too quickly and bumped his dose back up, which didn't help much (because it wasn't the cause of the problem). But the infection created so much extra swelling in his brain, he had to be given a higher dose of steroids.
His weight and appearance started to fluctuate like crazy. At times, his appetite was unbelievable!!! I remember late at night he would have 4-5 bowls of cereal, a half a bag of chips, and still be looking for more food. He would have all sorts of cravings. I tried not to say much, but sometimes it was a LOT. And he knew it, he just never felt satisfied. I told him he now knows what the little fat kid feels like that says, "But I'm just so hungry, mom!"
The antibiotics made him feel horrible, so he didn't eat much for those couple months, and actually lost a lot of weight. Then when he started to eat again, his face would puff and swell again (a side effect from the steroid).
By March, he started realizing that he really needed to get off the steroids. He was already considered long-term at this point, but the tapering was making him miserable. It's weird how a drug can have so much control over your body. It was such a LONG tapering process. He would only taper 1mg every week, but it would make a huge difference. Sometimes he would lose movement in his toes or have limited movement on his right side, he got horrible headaches, he would lose coordination, he couldn't think clearly or focus, he couldn't hold (what he calls) an intelligent conversation (so he told me he rarely talked at work - it took too much effort), and he said his right leg felt like a 50 lb. tree trunk he was forced to haul around with him all day.
His brother got married in April, and he asked me if it was selfish of him to want to up his dose for a few days just so he didn't look so uncoordinated for the wedding and all the people he hadn't seen for a while. That was when he named it the "devil's drug," because he said it was so hard to taper when he knew taking just that little tiny bit extra would make him feel like a million bucks.
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| Jared's siblings at Neil's wedding |
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| Whole family at Neil's wedding April 2012 |
We were definitely starting to get concerned about his long-term use of steroids. On the one hand, he was having side effects from taking the steroids - it made his legs really weak, his teeth were extremely sensitive, he was starting to show effects in his kidneys (steroids can cause kidney failure), his hip was really weak (some users have to get hip-replacement surgery), and they were limiting his ability to rehab. Yet when he tapered, he felt horrible all the time, had horrible headaches, and was less coordinated, couldn't walk very well, and couldn't move as much so he couldn't rehab anyway. He was getting really frustrated and didn't know what to do. I finally told him he needed to just make a tapering chart, and just stick to the chart regardless, and that all we could do was to pray like crazy that his body would be able to compensate for what it wasn't getting. By May, we knew from an MRI that it was no longer brain swelling causing tapering problems he was having, it was his body's dependency on the drug.
We were definitely starting to get concerned about his long-term use of steroids. On the one hand, he was having side effects from taking the steroids - it made his legs really weak, his teeth were extremely sensitive, he was starting to show effects in his kidneys (steroids can cause kidney failure), his hip was really weak (some users have to get hip-replacement surgery), and they were limiting his ability to rehab. Yet when he tapered, he felt horrible all the time, had horrible headaches, and was less coordinated, couldn't walk very well, and couldn't move as much so he couldn't rehab anyway. He was getting really frustrated and didn't know what to do. I finally told him he needed to just make a tapering chart, and just stick to the chart regardless, and that all we could do was to pray like crazy that his body would be able to compensate for what it wasn't getting. By May, we knew from an MRI that it was no longer brain swelling causing tapering problems he was having, it was his body's dependency on the drug.
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| July 2012 Jared hanging out with my family |
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| July 2012 With my neice, McKyla |
Finally in July, after nine months on the "devil's drug," he took his last pill! It was such a hard process to watch. He felt horrible pretty much every day, because the second he felt better he was scheduled to taper again. I was extremely proud of him for his dedication and determination to get off. I can testify that it was NOT easy.
At this point his only concern from the steroid is that his hip is still really weak, so there is a possibility of hip-replacement surgery in the future. We'll keep our fingers crossed!
