Cold Capping Update #2

Taxol is a chemotherapy drug that causes hair loss. It occurs somewhere 2-4 weeks after an initial dose. After so many drugs, after losing my hair twice previously, and even while I used a cold cap, my naiveté continues to surprise me. I got good results while on Doxil. I hoped, no – I expected it to continue when I switched to Taxol. I had passed the two-week mark on the new drug and was doing okay.

Then the three-week mark hit. More hair came out in with my morning comb out than I had experienced. How odd. Then with the night combing. Hmmm. I started documenting it. The pattern continued and got worse and worse with each day. It was matted in the morning when I woke up and that never had happened. As gently as I combed, out more would come. I commented to a friend that at this pace I wouldn’t have any hair left by the end of January. The writing was on the wall. Hair was on my clothes, on the floor, and in my food. Hundreds of strands in my comb and on the bathroom counter became thousands. I filled waste baskets.

Losing hair is a visual hopelessness. There wasn’t anything I could do to make it better.

This pattern continued steadily for three weeks. I stabilized by February with noticeable damage done to my hairstyle. There were bare patches on my crown, in the back, and on the sides toward the front. Not much was left if I were to pull it back into a ponytail or put it up. It was flat, unhealthy, and unattractive looking. I looked sick. I loved donning a hat for outside winter fun. I was skilled at arranging it just so to pull off a normal looking photograph taken from the front. People said I look great! People lied.

Some people photograph the clumps of hair and growing bald areas. I’ve seen the pictures. My personal moments will haunt me and I don’t need a visual reminder. No one needs to see my hair to make it real for them.

So, what good is the cold cap? Note it worked impressively well while on Doxil, not so well on Taxol. The recommendation is to continue because it can speed regrowth. Other users (and the nurses too) do confirm that regrowth is faster. Of course, that’s the recommendation because the company makes money with continued use. The thing is I’ve paid for my maximum capping sessions and anything over that is now free. I still have to endure the discomfort and extra time involved. Happily, I have seen some hints of regrowth from the top. The sides might be filling in, but this is even slower. I’ll stick with it.

One bright side is the first ten minutes with the cap is more durable. It’s no longer the worse possible feeling I can imagine. It’s no big deal. It almost feels refreshing and I kind of like it. It all goes quickly like clockwork. After 19 capping sessions, this is my norm.

I wonder at times how much more can I take. Apparently, there’s always more. I loved having hair again. I didn’t quite like having it so long, but that isn’t a problem anymore. Others’ comments that I have cute wigs are true. These comments also minimize a loss they’ve never experienced.

I just keep losing and I don’t know how this is my life.

I should be grateful I haven’t reached my breaking point. Should be. I think I’ve been broken repeatedly. My breaking point keeps getting reset to something more devastating. I should be glad it’s “only” hair. Again, should be. I am, but it’s my hair. Without it, sensitive comments absorb more quickly though my scalp and go straight to my emotions. I should remember it will grow back. Another should. I was without it for years the last time. This is now one more uncertainty in my life. Yes, I have bigger worries. I know I don’t need it, and I know others have been where I am, but I still need to hear I am heard. I need that ounce of validation that my tears and grief are validated. I need a little grace in my world where I don’t feel much.

I felt anger with this development of noticeable hair loss. I felt angry that I looked sick. I felt angry that the cold cap hasn’t worked better for me. I felt angry this happened again. And I still feel angry at comments that have come and will come from others. To be blunt, there is understandable ignorance from those who have never experienced chemo induced hair loss. I carry the burden of a teacher in how I choose to respond to well intentioned, yet ignorant, comments such as: It’s just hair. It will grow back. You have a wig. You look good. I know all this. It’s just hair and it’s not. I do look good in my wigs. It doesn’t mean I want to wear them. A part of me would LOVE to request that people forego coloring their hair. This raised such distress early on in the coronavirus lockdown. Maybe everyone I know needs to shave their head and keep shaving it to experience an inkling of what is one of the most emotional side effects from chemotherapy. Would those actions help me? Mmmmm . . . maybe.

Maybe, maybe, maybe.

People would sooner have regular colonoscopies.

There is such attachment to our outward appearance. Even to temporarily let go of that with what would be a selfish suggestion on my part would provoke instant emotional resistance at the possibility of not having hair for a relatively short period of time. No, I don’t expect anyone to embrace gray or baldness to prove anything to me. It still would not be the same. Just my ego acting out.

At this point in May, I’ve lost about 75% of my hair. I’ve opted for a short cut to take off the stringy strands that made me look sick and unhealthy. It’s more of an even cut and will support a better look as hair continues to fill in. I also colored it on my own a few days after the cut. Both are not to be done while cold capping because of the added stress it puts on the follicles. Big shock that I went against recommendations. It just isn’t realistic for me not to ever cut or color it again because treatment isn’t going to end for me.

That’s the update. I am a supporter of using a cold cap if it is an option for you. It digressed and wrote a fair bit about my hair and hair loss. They go hand in hand. The first photo was before Taxol took a toll. The middle photo doesn’t quite do justice to my daily look. Even in this photo, I was finger styling it and moving more of it to the front so it looked like I had more. I feel very comfortable with my short cut and I’m happy enough with this look.

We all need support when we’re down, upset, or frustrated. It can be an offer to talk where one person truly listens. It can be an empathetic comment where there is no attempt to fix anything. Sometimes an emoji is enough to convey what words miss. I find regular texts from a couple friends reassuring that someone cares. What words are supportive? I hear you. You are not alone.