A Melancholy Anniversary

Ten years ago today, I saw my hair for the last time. I had received my second treatment of FEC (Fluorouracil, Epirubicin Cyclophosphamide) the week before and had been ‘finger combing’ my hair every morning since, knowing it was only a matter of time until clumps of hair would abandon my scalp and my inevitable baldness would ensue.

On February 13, 2007, I had a lunch date with my good friend John. In the shower that morning, my finger comb filled up over and over with my loosening hair. Although I knew I was going to lose my hair with treatment, I surprised myself at how upset I was watching the hundreds of strands collect at the drain.

I got on the phone to the hairdresser only to find out my regular stylist was off that day. I lost it and had to hang up. Once I composed myself, I called back to make a late morning appointment with someone else and John and I stopped off at the salon for a really short haircut before heading off for lunch.

I had a really good head of healthy, full ‘Irish’ hair—so much so that sometimes I would grumble at how long it took to dry—I could never go to bed with damp hair because it would be a wavy mess in the morning and I would have to start the drying process all over again. I remember the last time I wished my hair would dry faster and have often regretted even thinking it.

I was so lucky as every day I could get out of bed, run my fingers down my part and my hair would settle into its style. With a bit of blush and lipstick, I was ready to start my day. My eyebrows had thinned a bit as I got older, but I had lovely, lush lashes which had never required mascara—I had always been a ‘get up and go’ kind of girl. I felt lucky that I never had to worry about running mascara or spend that extra time at night removing eye makeup.

How things have changed! I have about one quarter of the hair I had in the shower that fateful morning. My thin, post Taxotere hair sticks up all over my head every morning and needs ‘arranging’ daily—sometimes more often if I am caught in the wind and my extra strength hair ‘goos’ don’t hold. I’ve never been a hat person—with all the hair I used to have I just got too hot and now wearing hats just reminds me of when I was bald and sick and had to wear them. My eyebrows are non-existent and have to be drawn on every day. My biggest fear is that one or both will wipe off or smudge and I won’t notice. I’ve never been a mirror checker and like wearing a head covering, I still haven’t adopted the habit.

Our appearance is a neon sign advertising that something is, or has been, very wrong with us.

I find it interesting that TV ads regularly show men and women lamenting their thinning hair and bald spots with various companies offering treatments and potions to restore their manes. Words like ‘embarrassed’, ‘devastated’, ‘humiliated’ and ‘depressed’ are used to describe their feelings. When cancer patients use these terms with regards to how they feel about their Taxotere induced hair loss, they have been ridiculed and maligned and told they should be happy to be alive. What’s the difference? If someone who is genetically predisposed to thin hair can elicit public attention and commiseration why can’t those who unknowingly took a drug to cure a life-threatening disease and suffered the consequence?

Taxotere users generally don’t have only their hair loss to contend with. Our group has experienced body changes with lumpectomies or mastectomies and the associated, constant nerve and bone pain; side effects of medication including loss of feeling (neuropathy) in our hands and toes, osteoporosis and joint problems and the constant cloud of recurrence or worse yet, spreading of the disease. We all wonder if the serious treatments we endured have been enough.

Our appearance is a neon sign advertising to the world that something is, or has been, very wrong with us. After treatment, life usually returns to normal and cancer becomes a mere blip on the timeline of life, but we are reminded every day of the journey we have travelled and the unknown road ahead. Most of us can’t go out in the world without hairpieces, wigs and time- consuming make up tricks—friends tell us not to worry about it, but if the shoe was on the other foot….

I am thankful that I was never one to depend on my looks, but I am more self-conscious now than I ever have been—even combined with the ‘who knows me?’ and ‘who’s looking at me?’ attitude of an older woman. Very few friends have ‘drop-in’ privileges—I don’t answer my door if I don’t have my hair done and my brows on. I have refused invitations to see former colleagues and old friends because I expect them to be curious about the huge difference in my appearance and I don’t feel like explaining everything or re-introducing myself—it took me four years to recognize myself in a mirror! I don’t seek out former acquaintances and avoid social media. I have changed jobs and met many new people, but take the first opportunity when I get to know them better to self-consciously explain this is a new hair situation. To the annoyance of my friends, picture taking is absolutely out of the question—I don’t know if I’ll ever feel comfortable with the way I look.

I often ask myself how much longer I am going to hope for the old me. I have waited nine years for my hair to return and am starting to accept that it’s just not going to happen. I have tried all kinds of treatments but, like the other members of our group, there has been little improvement— certainly not enough to continue the twice-daily regimen and associated scrutiny of my scalp.

We all recognize that many people in the world deal with much more serious circumstances, but we were put in this situation unknowingly and are left to deal with an unnecessary and very difficult consequence. Members of our group diligently scour the Internet for new discoveries to potentially reverse our plight. I keep my fingers crossed that by my 20th anniversary this website and our group will no longer need to exist.

I can only hope that, in the meantime, the ‘head shamers’ and trolls will step back and examine why they are unable to empathize or keep their comments to themselves.


9 thoughts on “A Melancholy Anniversary

  1. So true. I want my back my hair! I miss it tremendously, am envious of hair, and never feel like myself. I look older, hate my hats, and no matter what I try never look “right” anymore. I am sorry all of us experience this loss of our identity.

  2. Well said “A melancoly anniversary”. You have expressed very well how it is for all of us who did not get their hair back from the chemo drug Taxotere.
    It will be 5 years this summer since I saw my hair. I have next to no hair,no eye brows and very few eye lashes. I draw my eye brows in and that’s it . There is no way for mascara. I shave my head every day to rid it off the scant stubble .I see a cancer patient staring at me every morning.
    I am so glad to have found this group. I AM NOT ALONE !❤

  3. Well said and exactly on point. The misery of our hair having been seemingly lost forever is a daily reminder of what we went through as breast cancer survivors. Those who got their hair back will never understand fully how we feel. It’s part of our identity and as women is particularly important, like it or not. I know adversity makes you stronger….so we must all be towers of strength!!

  4. Well said. If only those trolls could understand what we’ve gone through–and continue to feel every day of our “new normal.”

  5. Very well said. I still can not accept my new look and that serious side effect had totaly changed my life. It is an every day pain to see myself in the mirror.

  6. You have absolutely nailed it. I was once known for my lush long blond hair. Now, 5 years after chemo, I have dry thin patches of hair which stick up in mad Einstein tufts if left un-moused, unpowdered and unsprayed before I draw my eyebrows on.

  7. Thanks for telling your story. It makes me really sad. I want women everywhere to know that your story is true and that this is a serious issue. I was treated with Taxotere in late 2013 and early 2014. I was never told the facts about Taxotere and I was never given a choice to take another drug. I would have definitely chosen Taxol if I had been given a choice. Here’s the thing…I would be considered by most people be one of the lucky women who got my hair back. But there’s more to the story…
    About a year or so after my hair grew back I noticed it was much thinner. I had always had fine hair, but I had a ton of it. After chemo it was almost like someone took thinning shears and thinned out my hair all over…with an emphasis on the crown area. Then I noticed it wasn’t behaving the same way. It wouldn’t hold curl, it was very fly away and wispy, and it looked kind of like a scraggly dog. I also noticed that my once “fat ponytail” was a fraction of the size.
    I want to be clear…what I have experienced doesn’t even come close to what most of the women on this site have experienced. My heart breaks for all of you. The reason I bring it up is because I believe there is a whole other group of women like me…who on the surface appear to have their hair back, but in reality have experienced a permanent loss of 10-50% of their hair.
    This is important because it highlights the fact that the TRUE number of women who have experienced permanent hair loss has been GREATLY under reported. After all, the women who are bald (or left with peach fuzz) are having a hard time getting doctors to believe their stories…so they definitely aren’t believing mine.
    When I talked to my doctor about it he said that it might be the hormone treatment, but I totally disagree. I’ve been through chemo before. This was my second time. I went through chemo for the first time in 1993 and afterwards my hair grew back completely normal. Following that, I was on hormone treatment for 10 years and never experienced ANY hair loss – not until after treatment with Taxotere in 2013.
    I want women to know the truth so that they can make an informed decision. It depresses me to know that doctors are still down playing the risk. I am sorry that this happened to you (and many others). It was unethical and inhumane.

  8. Dr. Bourgeois gives his patients a choice: They can undergo 12 cycles of Taxol, with a very tiny risk of permanent hair loss, or four cycles of Taxotere, where the risk of hair loss is higher. Most choose Taxol, which he says works just as well on breast cancer.Mar 4, 2010

    I wish my doctor had given me the choice or I had seen the posting above before taking Taxotere in 2017. My hair is very thin especially on crown of my head with two male pattern balding spots. I considered the cold caps but decided agaisnt. I sure wish I had used then as they may have made a difference. And I wish my doctor gave me the treatment choice of Taxol. I have read a report that puts permanent hair loss risk with Taxotere as high as 15.9%. That’s means one in every 6-7 women will have permanent hair loss. Losing my hair has been more traumatic to me than losing my breast.

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