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.

Author: Kristie Konsoer

I've been living well with metastatic breast cancer since 2012. This blog is a place where I can share thoughts and ideas on cancer, how I feel perceptions of cancer must change, and how I am finding a way to live with strength, hope, meaning, resiliency, humor, and hopefully a little wisdom.

9 thoughts on “Cold Capping Update #2”

    1. I think it’s because it is so visual. We see it every day and it’s a constant reminder of what’s happening on the inside that no one can see. For me, it’s harder each time. My present mixes with memories of past trauma when it’s happened.

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  1. Oh Kristie, I am so sorry for everything you have and continue to have to go through. You are beautiful inside and out. Hair IS a big thing and you have every right to be upset and angry. Love you my friend.❤️

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  2. Ho boy do I feel this one like a cold slap upside my head. I’m sick of hearing “you look great” or the worse comment “in spite of everything you look good.” No I don’t. I’m not me anymore, my femininity stolen by hormone suppressant drugs, and chemo, and having 1 and 1/4 boobs (reduced further by the aromatase inhibitors and so on). I look like a “gray little boy” as Craig said to me one day while I was in one of my toilet marathons when my left leg falls asleep. It all sucks. I want to go around with a secret hair buzzer in my backpack (I can’t carry cross body or shoulder bags anymore because of my port and the neuropathy) and I can’t wear most of my old wardrobe so I look like “Stevie Nicks,” which is a compliment I guess. But I hate the way my lonely new cowlicks grew in when I lost about a third of my hair on taxol. No cold cap was even offered although I saw women with earlier stage cancer offered them. I knew they were earlier stage because I asked one of the nicer nurses who happened to be a traveling nurse why they got one and I didn’t. I stopped breathing my first taxol treatment. Luckily someone had gone with me or I’d have been brain dead. No beep beep for no breathing. My friend ran to the desk and said – Ilene’s not breathing she’s turning blue to which she was answered with I’ll be there in a sec. Yeah. True story. She comes over and inserts some Benadryl into my IV through my port. I fell asleep immediately not knowing whether I was alive or dead. I had hoped for the latter for the sake of the nurses. My oncologist happened to be in the building and came to the infusion center to check up and see how I was doing. He went ballistic and told the charge nurse to have someone sit with me at all times even if I was on Benadryl and he added it to my order. I actually loved the dreamy feeling of the IV Benadryl and when they’d come with the pills I’d have to remind them that the order was for IV. Guess what. No one came to sit with me for the 60 minutes they were instructed to do so for – i inquired as to why not and they said we can see you from the station,. No, you can’t if you’re not there.

    You know it’s a disease that steals from us. Everything we were is not who we are but somewhere inside the core of our being still exists and we miss the external representation of ourselves. How the hell can we not. Maybe, just maybe, one day someone will have a bbq accident and their hair will sizzle off and then they’ll get the indication of how just a little of all this loss feels.

    I absolutely hear you from my crappy new hair to the numbness of my toes and I love you.

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    1. I don’t think cold capping was ever offered to me. I inquired about it once and decided against it. Another time I asked about it and went for it. There certainly is a difference in how women in the Paxman FB group perceive it depending on their stage. There is more of an excitement/grateful vibe vs. one of endurance. I haven’t read about men using it but I bet they are out there.

      I hear you and see you. You are loved.

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  3. Even for a man who was bald on the top, it sucked to lose my hair around the fringes during chemo. I was into my third treatment when it happened suddenly. Washing my head and my hand came away with the hair. I felt betrayed. Now, after multiple treatment regimens, I’ve given up worrying about it. Easier for a guy, I know. There are other issues on my mind, of course .Nobody ever told me about cold capping. Your breathing situation sounds pretty darned scary. Really glad you had somebody with you!

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    1. Judging from ads on television, it appears hair loss is traumatic in any form is traumatic for men. I don’t know if it’s always easier for guys. Yes, there are a lot of other issues that take precedent when living with cancer. Cancer is filled with far too many of them. Thank you for sharing.

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