What goes down might go up, unfortunately
Had an appointment with Dr Mike on Friday. It was a follow up to my Monday exercise of collecting all of my urine for a 24 hour period - I will never look at a half gallon milk jug the same way again. The main item of interest was my kappa light chains (he said, trying to sound knowledgeable) and I will freely admit to having no idea what they are beyond the fact that my urine should contain between 0.14 and 2.42 mg per dL. When I started out at CCWNC, they stood at 450 so plenty of room for improvement. By May I was down to 2.47 but last week I was back up to 4.11 mg/dL, leading to the possible conclusion that my body was starting to reject the chemotherapy (stupid sod).
So now I am being moved onto something more aggressive - Revlimid. Read all about it at http://www.revlimid.com. As it is a development of thalidomide, I am under strict orders not to impregnate anyone, the odds of which are about the same as my winning the lottery. I have to take 21 pills a month and then have a week off - please tell me I don't also have to take 21 doses of steroids a month. I'm not allowed to touch the pills - I have to pop them straight from the blister pack into my mouth - and, if I do, I have to wash my hands as if I'd been handling uranium. (I re-read the instructions - they apply to the stuff inside the capsules, not the plastic coating.)
The price is mind-boggling so thank you, USA, for Medicare and up yours, republican politicians and voters who regard Medicare as socialistical.
In August I have to go to Wake Forest University Hospital to be reviewed for the possibility of a stem-cell transplant which isn't as gruesome as it sounds (I think). They take a dollop of blood from me, extract the bit they want and pump the rest back in. Then they do all manner of nasty things to the bit they sucked out and pump that back in, too. So a very sincere thank you for the offers of transplant donations but this one is a do-it-yourself job. My appointment at Wake Forest coincides with a full day of meetings at school which I get to miss so there is an upside.
Meanwhile my energy levels are down a bit and my appetite is more like that of a human being. I've done all manner of odd jobs around the house and at school this summer, none of which I had written on the "to do" board in the garage. I have also done none of the jobs from the "to do" board. This is immensely unfair as most of the jobs I've done have taken half a day while those on the "to do" board ("Paint over white patches on bathroom wall"- update : I did that) will take about 10 minutes. I really must put a ceiling fan in Susan's office upstairs, too (done it)- she's been very patient and I think I've worked out how to do it without the risk of falling through the ceiling. I'm not happy on ladders these days but I need to go up only a couple of steps and I think I can manage that. (Wrong - I did need to get into the loft space briefly to replace the plastic junction box with a metal one more able to carry the weight and handle the forces involved in a spinning fan).
So now I am being moved onto something more aggressive - Revlimid. Read all about it at http://www.revlimid.com. As it is a development of thalidomide, I am under strict orders not to impregnate anyone, the odds of which are about the same as my winning the lottery. I have to take 21 pills a month and then have a week off - please tell me I don't also have to take 21 doses of steroids a month. I'm not allowed to touch the pills - I have to pop them straight from the blister pack into my mouth - and, if I do, I have to wash my hands as if I'd been handling uranium. (I re-read the instructions - they apply to the stuff inside the capsules, not the plastic coating.)
The price is mind-boggling so thank you, USA, for Medicare and up yours, republican politicians and voters who regard Medicare as socialistical.
In August I have to go to Wake Forest University Hospital to be reviewed for the possibility of a stem-cell transplant which isn't as gruesome as it sounds (I think). They take a dollop of blood from me, extract the bit they want and pump the rest back in. Then they do all manner of nasty things to the bit they sucked out and pump that back in, too. So a very sincere thank you for the offers of transplant donations but this one is a do-it-yourself job. My appointment at Wake Forest coincides with a full day of meetings at school which I get to miss so there is an upside.
Meanwhile my energy levels are down a bit and my appetite is more like that of a human being. I've done all manner of odd jobs around the house and at school this summer, none of which I had written on the "to do" board in the garage. I have also done none of the jobs from the "to do" board. This is immensely unfair as most of the jobs I've done have taken half a day while those on the "to do" board ("Paint over white patches on bathroom wall"- update : I did that) will take about 10 minutes. I really must put a ceiling fan in Susan's office upstairs, too (done it)- she's been very patient and I think I've worked out how to do it without the risk of falling through the ceiling. I'm not happy on ladders these days but I need to go up only a couple of steps and I think I can manage that. (Wrong - I did need to get into the loft space briefly to replace the plastic junction box with a metal one more able to carry the weight and handle the forces involved in a spinning fan).
Your description of a stem cell transplant is correct, as far as I can tell as an educated layman. You didn't mention the bit about having to be in near isolation for a week or so because it weakens the body's defences against infection for a while. Visitors are allowed, but have to disinfect hands, etc. very carefully before joining the patient. Caveat: my experience of visiting folk in the midst of this procedure was almost 20 years ago so things may have changed.
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