Michelle: The inconvenient truth

If you were told that you needed to have chemotherapy to combat cancer, what is the first thing that would most likely come to mind? After the initial shock of the diagnosis, you would most likely be ready to fight the disease with everything that modern medicine has to offer. You would know that chemotherapy would most probably cause you to lose your hair, but conventional wisdom says that after treatment, your hair would grow back thicker, stronger, and more beautiful than ever. Right? Wrong! There are many of us who, after treatment, much to our horror, learned that we would be permanently bald. This is a disfigurement that in this era of modern medicine is not only devastating, but totally unacceptable.

My last haircut

My last haircut

My journey with chemotherapy induced permanent alopecia started three years ago. Once I finished treatment for Stage 2 invasive ductile breast cancer, I eagerly anticipated the regrowth of my hair. I was ready to ditch the wigs, and the scarves and buffs and reclaim what cancer took from me. Each day I would watch for sprouting hair, but it seemed slow in coming. A new head of hair was the prize I had earned after following the treatment protocol. Chemotherapy zapped me of my energy, the double mastectomy took my breasts, the radiation caused burning and scarring, and due to an anomaly in my genetic structure, the hysterectomy that followed caused hot flashes and weight gain. These were byproducts of the cancer treatment that I anticipated. I did not anticipate that years out of treatment I would be left with fine wisps of hair that grew in clumps around my head, but offered no coverage and no relief from the wigs and scarves that I had been wearing during the treatment. The painful reality is that I will forever look like a cancer patient.

The depression that this threw me into was unreal. A college freshman carelessly tossing her hair in front of me, a random shampoo commercial during my favorite television show, the drive home from work that takes me past my former hairstylist’s salon, or the sight of my blow dryer and hair straightener stored in my bathroom collecting dust are all everyday occurrences that bring me to my knees. I wasn’t prepared for this, I wasn’t told that this was a possible side effect of chemotherapy, and I wasn’t given a chance to make this decision for myself. There are many options in cancer treatment, and although I know that I am blessed that my cancer was halted, it came at a high cost. Had I known that there was the slightest chance that I would be permanently disfigured by the treatment, I would have paused and explored other options. Ultimately I may have opted to go with the treatment that I was given, but I had a right to be given all of the facts.

There are many people who hear my story and callously remark that I look just fine in my wig. Though that may be the case, it is not possible, nor comfortable to wear a wig all the time every day. I have also learned through experience that there are many things that simply can’t be done in a wig. You can’t ride a roller coaster or go to a water park with your kids in a wig. You can’t exercise vigorously or ride a bike on a trail. You can’t hold a squirmy baby or hug a friend too tightly because your wig will slip. Convertible car rides are out and you can no longer ride on the bow of a boat with your hair flying in the wind. You can’t wear a wig on the beach or ride a jet ski, and your head is always hot in the summertime. Trying on clothes with a wig is impossible and you can’t walk outside on a windy day without holding on to your wig; if it is raining and you have to hold an umbrella as well, it is nearly impossible. You can’t dive into a pool or walk through the woods in a wig. You can’t be intimate with your husband in a wig. Braiding your hair, wearing a ponytail, or tucking your hair behind your ears can’t be done in wig. When I am in situations where I can’t wear my wig, I am forever explaining my situation to friends and strangers alike. “No, my cancer hasn’t returned, I’m just bald.”

All of these things I have experienced firsthand. My new identity is a woman gripped by the physical and emotional horrors of chemotherapy-induced alopecia. If this is my cross to bear, I will bear it gladly, but I will not go quietly. The drug companies owe us answers. Cancer treatment is a billion dollar a year industry. Woman who are given chemotherapy deserve to know that this side effect is a real and possible reality. We can’t continue to be stripped of everything that makes us a woman all in the name of cancer treatment. We are an inconvenient truth and we deserve to be heard.

My new hairstyle

My new hairstyle

19 thoughts on “Michelle: The inconvenient truth

  1. Oh my gosh, you just wrote my story and there is no way I could have written it better myself. I was diagnosed with IDC like you in July 2013 and began treatment in August 2013. Here I am almost three years later and I’m still bald. Wigs are a joke, I agree. I’m sick of hearing everyone say “well at least your alive”. While this may be true and I thank God, let me shave your head only to find out you can’t grow it back and see how you feel. Worse yet, is not being told. It’s not right that we weren’t given the information to make an informed decision. My hair was the one thing I loved about myself. Losing my breast was nothing compared to my hair that will never come back. Amen to your story sister.

  2. This is a beautiful, courageous story and well-told. Thank you making me more aware of the reality of this situation–and you’re right, it is unacceptable that in this day of modern science, nothing can be done to prevent this side effect.

  3. Well said! One look at us and our history is revealed – I want to be in charge of my story rather than have it advertised by my appearance. It took 3 years after treatment before I recognized myself in a mirror. To this day I don’t allow photos.

  4. I was just reading on Alopecia world that there is a lady who posted this month that she had started taking Humira her Crohns disease and now she has a full head of hair within six months of taking it. Has anyone else heard about this?

  5. I cried when I read your story Michelle. This is my story as well and 4 years after ending treatment I find it harder and harder to cope with the hairloss.
    Your photo at the end could be mine. It is devastating what has happened to us.

    I really would like to fight and go on but some days, it is just not possible. I miss my hair so much….I really hope that we can spread awareness that this se is unacceptable and that women can make a well-informed choice, something that was denied to us.

  6. Well said Michelle. We all feel your pain. It’s been almost 4 years since I lost my hair to Taxotere. I have even less than you. No one understands how it feels not to have our hair back except us. You described very well the problems we have with wearing wigs. I have ended up shaving all my gross hair off and go bald in the summer with a hat or if I can get a henna crown done I don’t cover up. It has taken me a long time to have the courage to do this. Hugs to you.

  7. Unfortunately, my story too, Michelle. It is so easy to comment to someone, “You look nice in your wig,” but who really knows anything about wearing a wig until you actually have to wear one? When we made the choice to accept our recommended treatment, having chemo just like everyone else, we were sitting in a doctor’s office, still wearing our own real hair. You described very well the painful realities of trying to wear a wig every day for the rest of your life. Everyone knows that people don’t like having to lose their hair during chemotherapy, and that they would rather not. It just hurts EXTRA HARD when that hair loss is permanent.

  8. Michelle, you have written your story so clearly. Thank you! I don’t know if there are any circumstances where it is ok to have to wear a wig, but our situation could have either been avoided (by a different chemotherapy) or at least it would not have come as a surprise (if we had been warned). Wearing wigs is fun if you do it because you want to change or try it out or if it is temporary – it is far from fun if you have to wear a wig because of the situation we’re in. I’m sorry, it’s just not. After 5 years of having this result (my photo looks just like yours) hope that it was all a mistake and my hair will return has vanished. It is very very difficult.

  9. My story is exactly like yours Michelle. After 6 cycles of doxorubicin, cyclophosphamide, and taxotere for stage 2a triple negative breast cancer, I thought great now I will get my hair back. Well, only about 1/4 of it actually grew back. People really do not get this. Yes, of course, I am glad to be alive, but I was so utterly unprepared for this. Like so many people, I was not told about this potential side effect. One of the hard things for me is meeting new people who don’t know that I had breast cancer. It’s not something I like to blurt out, but I feel like I need to “explain” my hair because I know they are wondering.

  10. I share your frustration with hair loss after taxotere. My last treatment was almost 6 years ago and while I am fortunate enough have just enough hair to go without a wig I cannot wear my hair down and have to pull my hair back to play hide the bald spots everyday. If I am in bright lighting my scalp lights up and becomes instantly visible through the thin layer of hair covering it. I hate going into a store where they have the security monitor. Any confidence I have is ruined when I look up and see my scalp shining where I should see dark hair. Yes I am grateful to be alive but I almost refused to take chemo because of the temporary hair loss as I loved my long thick hair that I always felt was my best feature. My eyelashes came back thin and they are too short for a curler. Rogaine has helped slightly but still consider getting a hairpiece. I consider joining one of the lawsuits not for any money for myself but because I believe there are more than 6.3% of women with permanent hair loss and many of us do not report it. I hope they are forced to use their profits to find a way to reverse this. I was so angry when I talked to my onc. about my hair loss a few years ago because he was aware it was a side effect – why weren’t we told up front especially when Taxol was available? I think all of us could handle this better if we knew this could happen up front but to be told your hair will grow back and you will look like you did before makes accepting it so much harder. I am grateful we are all alive but I want to not look like a sick person anymore.

  11. Took Taxotere in 1999. Hair never came back. An hour hasn’t gone by in 17 years where I don’t think about having alopecia. Back in 1999, doctor said “Never have I seen this happen.” Year after year I go to see her for a check up. Never does she mention that Taxotere caused this. I thought I was the only one – a fluke of nature. I researched the reason for the first two years and just gave up. I accepted my fate and tried to move on. What a day when I recently found out that there were others like me. Although it makes me sad that others are enduring the same hairless days, I know that I am not a fluke- an unfortunate one. Heck yes I am happy to be alive. However, I also feel that the drug companies need to be held responsible. I was only given one option when diagnosed. No options. Told my hair loss was temporary.

  12. I lost it when the chemo nurse told me “I know how you feel”. No you don’t. I am thankful to be alive. I feel guilty complaining about my lack of hair when two of my friends have died from cancer. Not only did I lose my hair, I lost me. I still have a hard time recognizing me in the mirror. The meds everyone wants to give me for hair regrowth is temporary. If you don’t take them forever your hair falls out again. No thanks. I can’t do this a second time. I would rather be bald.

  13. I lost it when the chemo nurse told me “I know how you feel”. No you don’t. I am thankful to be alive. I feel guilty complaining about my lack of hair when two of my friends have died from cancer. Not only did I lose my hair, I lost me. I still have a hard time recognizing me in the mirror. The meds everyone wants to give me for hair regrowth is temporary. If you don’t take them forever your hair falls out again. No thanks. I can’t do this a second time. I would rather be bald.

  14. There are many people who hear my story and callously remark that I look just fine in my wig. Though that may be the case, it is not possible, nor comfortable to wear a wig all the time every day.

  15. I dont know yet if my hair will grow back. I am only one month out from last chemo treatment of taxotere. I actually researched drugs prior to being given. I was told by my onc and onc pharmacist that taxotere permanent hair loss is really rare and that my hair would grow back. With all the stories I have read it doesn’t seem very rare to me but more of just the norm.

  16. Hi Rebecca,

    My oncologist told me the same thing and even discouraged me from wearing the ice caps. I wish I had gone with my gut and not listened. Most people I know who had Taxotere don’t have the hair they had before. The degrees it comes back are different for many. I hope you are one of the ones who gets it back.

  17. we lost the first trial
    if you can go to the next trial in March 2020 please go
    we need to make a stance and show up with our wigs off

  18. I agree that any victim of this drug needs to go the bellwether trials. Make a statement that bullying vulnerable women is not acceptable.

  19. I am so glad to read your article and the real truth about it feels to permanently lose your hair. I have some hair but many bald patches… I have learned how to swirl it around and spray my scalp to make it appear as though I have hair but it is not my normal beautiful hair I had before. In addition it’s not my color or texture and it’s weird wispy hair that is not really able to be managed. No one wants to talk about how it feels to permanently lose your hair! I have been labeled negative just for having no hair. Most my friends and family have gone away from me making my diagnosis of cancer and permanent hair loss even more tragic. I go to work and come home only to my puppy dog. I am single and no man wants me. They have often commented why would they want me when they could have a normal woman with breasts and hair. It is such a bitter pill!

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