Hair today, gone tomorrow
Well, that last part is TBD.
I mentioned in earlier posts that I am doing "cold capping" through my chemotherapy treatments. Cold capping is referred to as "scalp cooling," but frankly that is a generous description. It is scalp freezing. The theory behind it is that chemo works by targeting the "hot," most rapidly dividing cells in the body. By freezing the hair follicles, cold capping reduces the likelihood of the meds killing off those cells.
There are various methods between machine vs. manual cold capping. My hospital happens to be one of a few that has a machine onsite. The difference is that the machine runs continuously, cycling freezing water that stays between 3-5 degrees Fahrenheit. With manual cold capping, you purchase several caps that you have to keep in the freezer or on dry ice, and change them out every 30 minutes. The person assisting with changing out the caps has to be trained in the technique, to ensure a perfect fit. Clearly the machine was a strong consideration in choosing my treating hospital. Rental fee is $300 per session, and insurance companies are crawling to begin covering it as a medical necessity. They do, however, prescribe "cranial prosthetics” (wigs).
There are other rules to capping. On capping day, for my brand of capping machine (Dignicap), I have to wash my hair, skip conditioner, and fully comb it out. This is a recipe for pain and frustration. Then, before fitting the cap, the nurse has to soak my hair in the bathroom sink, I have to comb it again, and then she has to spray it again at the chair, to make sure it is dripping wet before the cap goes on. This is all to get the closest scalp placement possible, but wet hair plus a 3-5 degree cap?? It goes against everything our parents told us when we were kids.
There are layers to the cap. The first is a helmet layer, covered with a very tight fitting skull cap. The nurse puts a little gauze in between the layers to ensure a tighter fit, and then a second layer of cap goes on top. The outer layer has straps and buckles that are pulled and cranked to tighten. The caps are TIGHT.
I had to purchase some moleskin for my forehead, to create a barrier so the cap didn't irritate me. I failed, because the piece was too narrow, and I ended up with bruises on either side of the white moleskin patch shown here. I also lined the chin strap with moleskin, but ultimately had to put a sock in there as a better barrier. Not only was it uncomfortable, but I HATE things on my neck and I needed better leverage for pulling it away from my neck. I'm told that many people use a pad (as in, sanitary napkin) on their forehead for better coverage, and truth be told, that will probably be me on Wednesday.
But the day-of protocol is nothing compared to the every-day protocol that comes with the commitment. I have to completely baby my hair. I can only wash it once a week, in cool water (fine). No product other than conditioner on non-infusion days (yikes). I can only put it up or back in VERY loose styles, such as a loose braid, and use satin scrunchies. I have to sleep on a silk pillowcase, and keep my hair in a braid. I can basically do nothing that puts any strain on the hair follicles. And then? I may still lose a ton of hair. According to the Dignicap studies, 65% of the test group saved at least 50% of their hair. But I'm told that even if I lose a lot, cold capping helps regrowth faster than going bald.
And, here's the kicker, the nurse told me that Day 19 is typically when the big shed starts to happen. If chemo day is Day 0, then today is Day 18. Even though I have been counting down and holding my breath, the idea that I could go to bed with my head of hair and wake up with hair all over the pillow is quite nerve wracking.
So...why? I go back and forth on whether I should continue with it. But the bottom line is that, as mentioned in the beginning, I want to keep things in my life that remind me of not having cancer. And to be reminded of the hope that is on the other side. And, in our house, hair is a really really big deal. These two beautiful kids of ours have some really amazing, really big hair and we might complain about the maintenance, but we enjoy it all the same. It is a signature. And the idea of me losing my hair was weighing very heavily on my sweet six year old. One evening, he was pacing back and forth in the bathroom saying "wait a minute. I think I have an idea for how you don't have to lose your hair." And just like that, the desire to keep it strongly outweighed the urge to say "forget it. I am not my hair."
My hair is me. I hope I still have a lot of it tomorrow.
Check out www.rapunzelproject.org if you're interested in more info on cold capping.
I mentioned in earlier posts that I am doing "cold capping" through my chemotherapy treatments. Cold capping is referred to as "scalp cooling," but frankly that is a generous description. It is scalp freezing. The theory behind it is that chemo works by targeting the "hot," most rapidly dividing cells in the body. By freezing the hair follicles, cold capping reduces the likelihood of the meds killing off those cells.
There are various methods between machine vs. manual cold capping. My hospital happens to be one of a few that has a machine onsite. The difference is that the machine runs continuously, cycling freezing water that stays between 3-5 degrees Fahrenheit. With manual cold capping, you purchase several caps that you have to keep in the freezer or on dry ice, and change them out every 30 minutes. The person assisting with changing out the caps has to be trained in the technique, to ensure a perfect fit. Clearly the machine was a strong consideration in choosing my treating hospital. Rental fee is $300 per session, and insurance companies are crawling to begin covering it as a medical necessity. They do, however, prescribe "cranial prosthetics” (wigs).
There are other rules to capping. On capping day, for my brand of capping machine (Dignicap), I have to wash my hair, skip conditioner, and fully comb it out. This is a recipe for pain and frustration. Then, before fitting the cap, the nurse has to soak my hair in the bathroom sink, I have to comb it again, and then she has to spray it again at the chair, to make sure it is dripping wet before the cap goes on. This is all to get the closest scalp placement possible, but wet hair plus a 3-5 degree cap?? It goes against everything our parents told us when we were kids.There are layers to the cap. The first is a helmet layer, covered with a very tight fitting skull cap. The nurse puts a little gauze in between the layers to ensure a tighter fit, and then a second layer of cap goes on top. The outer layer has straps and buckles that are pulled and cranked to tighten. The caps are TIGHT.
I had to purchase some moleskin for my forehead, to create a barrier so the cap didn't irritate me. I failed, because the piece was too narrow, and I ended up with bruises on either side of the white moleskin patch shown here. I also lined the chin strap with moleskin, but ultimately had to put a sock in there as a better barrier. Not only was it uncomfortable, but I HATE things on my neck and I needed better leverage for pulling it away from my neck. I'm told that many people use a pad (as in, sanitary napkin) on their forehead for better coverage, and truth be told, that will probably be me on Wednesday.
When it first goes on, it feels like a brain freeze on steroids. In fact, the nurse saved the Ativan part of my IV meds for just before cold capping, to lesson the stress of having your head jolted with frozen water. It took about 10 minutes for my head to get acclimated, and then I settled in for the next five (!!) hours with this thing on my head. Yes, you read that right. It has to be on my head for 30 minutes before starting chemo meds, then during the infusion of those two meds, and then a full two hours after. We were literally just sitting there for two hours for the cool down period, during which time my head felt like it would explode from the headache created at those two pressure points on my forehead. It was bad enough that the doctor authorized ibuprofen, which is typically avoided during chemo because it thins the blood. But Tylenol might as well be tic tacs for bad headaches. When the cap came off, my hair was actually frozen to the inside of the cap, and took a little time to thaw out.
But the day-of protocol is nothing compared to the every-day protocol that comes with the commitment. I have to completely baby my hair. I can only wash it once a week, in cool water (fine). No product other than conditioner on non-infusion days (yikes). I can only put it up or back in VERY loose styles, such as a loose braid, and use satin scrunchies. I have to sleep on a silk pillowcase, and keep my hair in a braid. I can basically do nothing that puts any strain on the hair follicles. And then? I may still lose a ton of hair. According to the Dignicap studies, 65% of the test group saved at least 50% of their hair. But I'm told that even if I lose a lot, cold capping helps regrowth faster than going bald.
And, here's the kicker, the nurse told me that Day 19 is typically when the big shed starts to happen. If chemo day is Day 0, then today is Day 18. Even though I have been counting down and holding my breath, the idea that I could go to bed with my head of hair and wake up with hair all over the pillow is quite nerve wracking.
So...why? I go back and forth on whether I should continue with it. But the bottom line is that, as mentioned in the beginning, I want to keep things in my life that remind me of not having cancer. And to be reminded of the hope that is on the other side. And, in our house, hair is a really really big deal. These two beautiful kids of ours have some really amazing, really big hair and we might complain about the maintenance, but we enjoy it all the same. It is a signature. And the idea of me losing my hair was weighing very heavily on my sweet six year old. One evening, he was pacing back and forth in the bathroom saying "wait a minute. I think I have an idea for how you don't have to lose your hair." And just like that, the desire to keep it strongly outweighed the urge to say "forget it. I am not my hair."
My hair is me. I hope I still have a lot of it tomorrow.
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