Hair loss during chemo – part 1

The thought of losing my hair has troubled me since I found out that chemotherapy was a likely part of my treatment plan. I didn’t have chemo last time I had breast cancer so didn’t have to deal with this then. In my last post I wrote about how I opted to use cold cap therapy in an attempt to keep my hair. I’m half way through my (TC) chemo so I’m writing about what has happened with my hair so far and why, for me, hair loss has been a big deal.

Hair loss from my head

After round 1 of chemo, I noticed a slight increase in hair loss compared with the normal amount of shedding. This started from around day 15 of the cycle. I hoped this was just the ‘thinning’ that some people experience. I was fine with that. There was plenty of hair so a little shrinkage was no problem. Because of the length, I kept finding sections of matted tangles like a dolls (messy) hair, I suspect where strands gathered as they fell out.

The morning before leaving for round 2 of chemo, a heap of hair came out (see the first pic below). It was a quite disturbing but a lot remained on my head and it wasn’t noticeable. I was more annoyed about having to update the blog I had drafted so I added a line which mentioned hair loss and thinning and hit the ‘publish’ button as I sat in the hospital waiting room.

Then, as I was prepping my hair for the ice cap, the amount coming out seemed to accelerate. There was so much in the brush, in my hands, on my back, on the floor. I collected it and filled the toilet basin with a significant mass of hair. I looked in the mirror and saw a bald patch at the top of my head. I couldn’t believe it. I gasped and my heart sank. I desperately hoped the ice caps would save all my hair and, although I knew this was a plausible situation, I felt so much sadness.

However, even at this point, I still had quite a bit left and the patch was easy to cover with a little comb over. It was like Mary Poppins’ magic – instead of items out of a bag, I had a lot of hair leaving my head yet plenty left behind. I did have a huge amount to start with though!

I found the hair loss tramatic, but wasn’t ready to shave it off, so I decided to take a little control and give myself a haircut for the first time ever! I figured that the volume of whatever came out would be less and it shouldn’t get as tangled.

Thankfully my DIY haircut mostly sits under a wig because I feel more secure with it on. Aside from the slight discomfort in terms of heat and itchiness, I quite like it. And my husband likes the fact it now takes me a few seconds to do ‘my hair’! I have a few of the head scarves too but I haven’t figured out how to wear them without looking like I’m about to embark on a massive cleaning project, minus the feather duster!

 

Other hair loss

For me the head hair is the most significant because of my emotional attachment to it and because there is so much. All my body hair is falling out too. The other areas I’ve been monitoring the most are:

• My eyebrows and eyelashes – which are still there, albeit slightly sparse versions of the pre-chemo ones. It’s nothing that a bit of brow make up can’t fix to make me look myself. I recently heard about micro-blading (basically eyebrow tattoos) and wish I had this done before chemo started. My oncology nurse suggested not getting it done during because it involves small needles so could pose an infection risk while my immune system is weak.
• My nose – which seems to be running a lot more. When I looked in the mirror I realised there are hardly any of the little nasal hairs so I constantly have tissues on hand now! I had a pack of tissues in a gift set and thought they were for all the tears, maybe it was for my nose?!
• My legs and underarms – I’m waiting for silky smooth legs akin to those of the Gillette lady. I stopped shaving my legs and underarms after round 1 of Chemo, fearing the dreaded ingrown hair if they got stuck under the skin as they fell out. That was over 3 weeks ago but I haven’t quite got the cave woman look because the hair stopped growing. Lots has fallen out but the rest is as if I haven’t shaved for a day. Although there’s hardly anything in my armpits I gave in and carefully shaved them this week before I saw a physio about the cording (a surgery side effect) I’ve developed.

Sorry if that’s too much info on my personal grooming but I figured some people may want to know!

Why it is a big deal

It seems trivial to worry about something that should (hopefully) grow back. I know there’s a good lesson about beauty being on the inside and I feel guilty for crying about this when there are worse situations in the world. But it isn’t superficial. For me, this is about more than just hair.

It’s my identity. My hair can be unruly but people close to me know that my hair has been a huge (literally!) part of me. It is ‘my thing’. I have other “things” but my hair has come to define part of who I am. I asked for an undercut when I was at school and didn’t know how to control the volume. I used to “borrow” my older sister’s hair products before I was old enough to buy my own. I got my hair braided on holiday after my friends gently hinted that it might stop my grumbles about the humidity-induced frizz. My husband says he was intrigued by my hair on the rainy night we met as it grew into a big “lionhead” (his exact word!) through the night under the drizzle. My son wrote in his mothers’ day card that “he loves my long hair”. I have been more concerned about losing my hair than losing my breasts.

I feel yucky. When I look my best, I feel more confident. Since I started chemo, I haven’t used any hair styling products or straighteners in case it would aggravate my hair. It was like I was a teenager again, before the invention of decent hair straighteners and before I had my own frizz-reducing products. I didn’t want to be bald but then I also haven’t welcomed the patchy hair loss, frizz and worries of more shedding. My husband reassures me and says I’m no different with or without hair. Despite his grumbles about my bad habits he’s always seen beauty in me that I can’t, so I love him dearly but can’t trust him for an independent view on this!

More decisions. I could stop the cold capping and know for certain that all the remaining hair will come out. I could take control and shave my head. But what if I’ve had the main exodus of hair and from now on loss is minimal? A lot of people reassure me and say it’s only hair and it will grow back. I have read about cases where it doesn’t but I try not to think about that. I’ve decided to stick with the ice cap for now. If it slows the hair loss and I can save some, it will be easier to get back to ‘me’ when this is done.

On one hand, I’m ashamed to be superficial about my hair. I know it shouldn’t matter but, to me, it does. This is about more than just hair loss. It’s about being vulnerable because it represents my loss of identity, feeling worse at an emotionally fragile time and the uncertainty. I’m sure I’ll forget these feelings in time but these are my thoughts at this point.

I’ve found this really hard but once again everyone has been super kind and supportive. In particular, my chats with the awesome nurses always make me feel better. I’ve also found some Online communities of women going through similar situations which have been helpful for me too. This is my situation but I’ve heard so many success stories of the ice cap and still have hope that mine will be a partial success at least!