My 4 month anniversary is this coming Saturday, October 13. I am feeling great, my weight is stable (103 at home; 106 at the doctor's office), and all the numbers (creatinine, hemoglobin, electrolytes, etc.) look great. Dr. Moulton said yesterday that if I just made up some numbers to put on my chart, I would not make them up as good as they really are!
I'm experiencing few side effects from the meds I'm taking. The most distressing side effect is hair loss. I found several discussion forums on the internet that include women who are on steroids either for transplant reasons or for rheumatoid arthritis (RA). A number of them reported moderate to severe hair loss, and most of them said that it seemed to have started when they were put on the steroid tapering schedule. The tapering schedule is the "weaning" process through which the initial large dose of daily post-transplant steroids are reduced over a period of time. My hair loss started in September, about a month after the tapering schedule ended (I went from 20 mg to 10 mg of steroids daily) in August.
The good news from the discussion forums is that the hair does eventually grow back, and some women reported that theirs had come back curly (if it was straight before) or straight if it was curly before. Maybe I'll have curly hair at some point!
As best I can tell, my har is breaking off rather than falling out from the roots. I've checked the hairs that come off in my hands when I wash it, and few of them have the root follicles on the ends.Plus, the hair that hasn't fallen out appears to have been cut very short, which I take to mean that the hairs have broken off somewhere between 1/2 to 2/3 of the way from the ends. Whatever is happening, my hair is thin enough so that you can see my scalp; no bald spots, just very thin hair, and what I have seems to be rather lifeless and limp. I've considered having my stylist buzz my head so that I'd be better able to tell whether it's growing any, but that would leave me with absolutely no option other than to cover my head 100% of the time. Right now I am still able to go with my head uncovered at least at home; for our walks I tie a scarf around it or wear a baseball cap, but mostly because it is getting chilly rather than because of looks.
Even though I still have enough hair to go hatless, I was getting really self-conscious about my looks when going out. I have my high school reunion coming up on Oct. 19, and I didn't want to face that crowd with thin hair, so I went out and bought 2 wigs on Oct. 2. I got them at The Women's Pavilion in Rogers. They specialize in mastectomy bras and prosthetics, as well as wigs, scarves, turbans, etc. for women cancer patients. One of the wigs is short and has a tapered neckline much like my own hairstyle. It has blonder hair in the front and darker (brown) hair in the back, much like my own. Of course my own right now is starting to look mostly gray because I am not having any color applied while I'm still having hair loss. I think I may not have color applied until my hair has grown back to its previous volume, if it ever does.
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