So I had my weekly infusion appointment. The nice nurse (who is good at accessing the port without pain) informed me she is leaving the office, which is a bummer. I'm sure they have other competent people but I have a good relationship worked out with this woman: she doesn't hurt me, and I don't scream bloody murder. Hopefully that can carry over to whomever is next responsible for me.
One thing that drives me grazy about Dr. GD's office is they won't give me my damn labs. It's MY BLOOD for Pete's sake. I'm entitled to it, and I also know how to interpret it better than anybody there except the doctors. But for example, they didn't have last week's labs in my file yet, because "the doctor hasn't reviewed them." This, I feel, is bullsh*t.
What they DID have was today's bloodwork, which I wasn't crazy about. White count is 3.7, which is getting low. Hemoglobin is 13.4, which is okay but not as high as I'd like. Platelets are at 108, which isn't great since they'll be going down for another two weeks while I"m on Revlimid and they'll probably get well below 100 this time. Plus that RDW marker, which I've come to associate with Myeloma since it was screwy when I had it, is back up to 14.3 -- just a little outside the normal range, which I don't like.
I would have liked to see the immunofixation results to assuage my concerns. But they weren't available. GRRRR....
Tuesday, December 29, 2009
A note on hair regrowth...
I realize this topic doesn't have the urgency of some past posts, but I'm in a position to post some interesting observations, at least!
* I was told by my original hematologist that hair loss would occur after the high-dose Melphalan administered during the transplants. In reality, my hair loss occured during induction (in fairness to my original oncologist, he didn't anticipate Adriamycin being included in the induction protocol) and I started REGROWING hair during the transplants, particularly on the face. Regular readers may recall my colander-helmet photo taken after the second transplant.
* I was told that it would take about two months before hair started regrowing; this was basically as expected. It took probably another month before I had a decent covering of hair, and two months before I had a full head of hair.
* I was told that hair can grow back in a different texture and different color post-transplant, but that if one's own cells were used, the variability was much less than with other cells. Interestingly, mine did grow back in a different texture (much more fine, initially) and different color (a dusty medium brown rather than dark brown). However, this changed over time, particularly the color. I'm now three months post-commencement of hair regrowth (i.e. five months from the last treatment of chemo...wow!!!!) and my hair is the same color that it was when this whole mess started. Texture, however, is another thing. It isn't as fine as it was, it's a bit richer (not yet how it used to be, but on its way). But I have a patch about two inches square that is very wavy, and I have another patch that grows forward where all around it grows backwards. This makes for hair that doesn't yield to styling. My solution thus far is to keep it quite short...however pulling off that look requires me to lose weight which, given my Dex schedule, is rather challenging. Hopefully I can accomplish something, though! I've had to abandon physical therapy due to the work schedule, but I really need to try to get back there at least once a week, both for weight loss and for maintaining muscle.
* My hair stylist points out that hair cells retain whatever chemicals are in the body for a long time, which makes perfect sense -- we've probably all heard about drug-testing that can be done on a strand of hair that retains literally years of memory. So it's going to take some time for my hair cells to get done regurgitating all the drugs that have been in my system.
So, like I said, not exactly gripping but potentially interesting for somebody about to face their own hair loss situation.
In other news, everything is pretty darn good. I slept poorly last night which is a bad thing since today is a Dex day and that means there could be shakiness ahead. I'm going to continue to follow the suggestion of taking it right before bed this evening.
I'll have a final 2009 post later this week. Hope you are all doing well!
* I was told by my original hematologist that hair loss would occur after the high-dose Melphalan administered during the transplants. In reality, my hair loss occured during induction (in fairness to my original oncologist, he didn't anticipate Adriamycin being included in the induction protocol) and I started REGROWING hair during the transplants, particularly on the face. Regular readers may recall my colander-helmet photo taken after the second transplant.
* I was told that it would take about two months before hair started regrowing; this was basically as expected. It took probably another month before I had a decent covering of hair, and two months before I had a full head of hair.
* I was told that hair can grow back in a different texture and different color post-transplant, but that if one's own cells were used, the variability was much less than with other cells. Interestingly, mine did grow back in a different texture (much more fine, initially) and different color (a dusty medium brown rather than dark brown). However, this changed over time, particularly the color. I'm now three months post-commencement of hair regrowth (i.e. five months from the last treatment of chemo...wow!!!!) and my hair is the same color that it was when this whole mess started. Texture, however, is another thing. It isn't as fine as it was, it's a bit richer (not yet how it used to be, but on its way). But I have a patch about two inches square that is very wavy, and I have another patch that grows forward where all around it grows backwards. This makes for hair that doesn't yield to styling. My solution thus far is to keep it quite short...however pulling off that look requires me to lose weight which, given my Dex schedule, is rather challenging. Hopefully I can accomplish something, though! I've had to abandon physical therapy due to the work schedule, but I really need to try to get back there at least once a week, both for weight loss and for maintaining muscle.
* My hair stylist points out that hair cells retain whatever chemicals are in the body for a long time, which makes perfect sense -- we've probably all heard about drug-testing that can be done on a strand of hair that retains literally years of memory. So it's going to take some time for my hair cells to get done regurgitating all the drugs that have been in my system.
So, like I said, not exactly gripping but potentially interesting for somebody about to face their own hair loss situation.
In other news, everything is pretty darn good. I slept poorly last night which is a bad thing since today is a Dex day and that means there could be shakiness ahead. I'm going to continue to follow the suggestion of taking it right before bed this evening.
I'll have a final 2009 post later this week. Hope you are all doing well!
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