Nothing Can Truly Prepare You for Chemo Hair Loss…

Dealing with a Breast Cancer diagnosis is hard. But even harder is dealing with all the side effects that come with Breast Cancer treatment. While the side effects are not fun, the hardest one, by far, to face is chemo hair loss.

My Stage III, triple positive, HER2+ Breast Cancer diagnosis came in September of 2016. The days that followed my Breast Cancer diagnosis pretty much went by in a blur. Countless tests to determine how far cancer had spread. And more tests to get a baseline to see how the tumor would respond to the treatments that were to come.

While cancer had spread to my lymph nodes, luckily it had not gone any further. You can read more about my diagnosis in my earlier post, You Have Breast Cancer.

My Treatment:

I started my six rounds of TCHP chemo on October 11, 2016. The day after my Power Port was installed, how fun. Hair loss from Cancer treatments is quite common. You know it will happen, and you do your best to prepare yourself for it. But when it finally happens, you suddenly realize that all the knowledge in the world has not prepared you for the feelings associated with losing your hair.

After speaking with previous Breast Cancer survivors, as well as doing my own research, I thought noticeable hair loss would start to occur after my second treatment which was scheduled for November 1, 2016. Needless to say, the hair loss fairies had other ideas.

With just one round of chemotherapy behind me, the treatment side effects began to kick in. There was the fatigue that was unlike I had ever experienced. A dry mouth, and a sense of taste that was so far off, it made it very difficult to find something that was appetizing to eat.

Hair, Exit Stage Left:

Many said that I could expect my hair to start thinning after the first round of chemo, but what I experienced was beyond just normal hair thinning. The hair loss became noticeable during my morning routine of straightening my hair before work. Combing it resulted in more strands on the counter and the floor, but, by far the worst was when it came to washing my hair. The change felt like it happened overnight. The loss of my hair went from a few strands falling out to large clumps getting stuck in my hands. Words cannot even express the pain and emotions that I went through when I watched more hair go down the drain than remained on my head.

I held out for as long as I could, but the hair loss got to be so bad, that I was forced to make the tough decision to shave my head on October 26, 2016. I didn’t want to lose my hair, to lose a part of my identity, and bald. Forced to have to wear an itchy wig for the remainder of my battle with Breast Cancer. But I also didn’t want to go into work feeling like there were huge clumps missing in my scalp.

Apparently, my feelings regarding the loss of my hair were more psychological than actual. Although my husband did say that it was noticeably thinning. Even just running my fingers through it caused strands to fall out and everywhere. Luckily, my mom had had the idea to take me wig shopping long before I started my Breast Cancer treatments, so at least I already had my new “hair” ready to go. While everyone at work knew about my diagnosis, I still was not ready to admit to myself that worst was yet to come.

Let the Head Shaving Commence:

Your hair is part of your identity, that which makes you, you. Losing your hair because of Chemotherapy treatments takes away the control you have over your identity, which is why I tried my best to hold off on using my wig for as long as possibly could. I was not ready for this stage in my Cancer journey, but I had to find some strength deep inside me to take control of the situation. After many tears, I made the tough decision to have my husband shave off what remained of my hair.

I was an utter mess during the whole process, but he was the rock and support I so desperately needed. Of course, he made some references to Sinéad O’Connor, which of course made me laugh in the middle of all my tears.

Shaving my head was hard, but the second hardest step in the chemo hair loss process still lay ahead. How would I be perceived at work? Would I get strange looks from people I barely knew? How would my co-workers treat me with my new “hair”?

Rocking the Wig Post Chemo Hair Loss:

I felt so self-conscious, so not myself, as I no longer had my own hair.  Instead, I had to hide my nearly bald head under this wig that made me feel like an alien inside my own body. Luckily everyone at work was very kind. I received many compliments on my new do, mostly from people I only saw in passing. Not knowing what to say, I quietly smiled and said “Thanks.” Because how do you explain to someone that you barely know that your new haircut is not real?

While the wig made me look normal, it was the most uncomfortable thing in the world. My wig was breathable, yet every hour the wig spent on my head felt like torture. I could not wait to get home to take the thing off my head. It was itchy and made the hot flashes from the chemically induced menopause 100 times worse. I spent the rest of my time covering my head with soft fabric caps I had purchased off Etsy and Amazon. Depending on the weather, I either put a baseball cap over it or my newly acquired Boston Red Sox winter hat.

Hair Growth has Commenced:

The months passed and with it my six round of chemotherapy. The worst of my treatments were over and with it my hair loss. My hair

August 12. 2017

was slowly starting to return, and I had grown so tired of the wig that I couldn’t wait till my hair was long enough so I could say goodbye to it once and for all. But in my mind, I was self-conscious. I feared my post-hair loss look would not be met with a positive response.

The internal nervousness of my post-chemo hair loss was so bad that I posted a picture on my personal Facebook page in May regarding my lack of hair. Luckily I received nothing but positive responses from my friends. Their support helped me put my fears aside, and while I was still nervous, I went to work on May 23, 2017, for the very first time without my wig, and now the rest is history.

The photo to the right was taken on August 12, 2017, shows that my hair is coming in quite nicely. Of course, it’s still growing way too slow for my taste. It’s better than nothing at all and is proof that I am moving forward towards being normal once again. Whatever my new normal may be.

16 Comments

  • Niley

    Sorry to about what you have been through, you are really very strong and the fact that you got the courage to write about it makes you one of the most courageous people I have ever met.  This article is an eye opener and a reminder that there are people suffering silently because of the stigma they go through and or anticipate if society will accept them and the new changes on their bodies.  For a woman it is really a nightmare but hope everyone in a similar situation reads this and be encouraged to live and positively.

    • Jennifer Bedell

      Thanks so much! That was really the hardest part. Women are always expected to look a certain way, and our hair is perceived as such a critical part of our appearance. Cancer is really a scary thing, and helping others feel like they are not alone in this journey was my goal.

  • Nicki V

    You are a true warrior and I commend you for the battle you just fought.  I can’t even begin to imagine how hard it was to go through chemotherapy and to lose your hair because of it.  I’m sure people had told you not to worry about the hair loss as you are fighting something much more than just your appearance, but that doesn’t make it any easier.  I pray for you that you are now in remission and that it didn’t spread anywhere else.  I know the horrors that come with cancer.  My father was just diagnosed in April, 2018, with stage 1 bile duct cancer (choloangiocarcinoma). It took him on July 16, 2018. He wanted chemo so badly because he wanted a chance at the fight.  Unfortunately, after a bought of sepsis, he was too weak to undergo chemo and it had spread too far.  

    You are a hero and don’t ever let anyone tell you any different.  Thanks for the great post.  I’m sure you will give courage to many in your shoes who are fighting the same battle <3 

    • Jennifer Bedell

      It’s interesting that you mention that your father sadly also was diagnosed with cancer. A similar thing happened to me. In the spring of 2015, my dad was diagnosed with metastatic pancreatic cancer. As you probably know, that is cancer that has spread to other areas of the body. He too would have done chemo, but it would not have done him any good, except to make him feel miserable in his last months on earth. I was lucky, and was diagnosed at stage 3A, so it had only gone as far as the lymph nodes in my under arm, and nowhere else, as all scans, bone, abdomen, and brain, came back negative. Thank goodness! I knew I had to fight the fight my dad was unable to, no matter how scary it was.

      Cancer is really a scary thing, and while there are so many fundraisers to put an end to breast cancer, too few choose to speak out about the real struggle of dealing with this horrible disease. I just want others to feel like they’re not alone in this. I’ve been through it and survived, although it was not always easy, but I did it!

  • Mary Sinn

    Your site is very informative about your survival and I am very glad that you have a chance to continue and be what and who you want to be. It is very well laid out and I would want anyone who is going through what you have been through to read your story.

    • Jennifer Bedell

      Thanks for your reply! That was my goal of this site, to help other Breast Cancer Warriors feel like they are not alone in their struggles. It is in no way an easy journey, and it is something I will never wish on my worst enemy, but there is a light at the end of the tunnel.

  • Shannon

    Thank you so much for sharing this heartfelt story of your cancer journey. I think this will be so helpful to others who don’t know what to expect from their treatment. Writing your account of what you went through is a very selfless and kind thing to you and yor honesty was profound to read.  By the way, you’re new hair growth looks great. 🙂

    • Jennifer Bedell

      That was my ultimate goal, to help others. We all know that hair loss is part of the cancer journey, but it doesn’t make it any easier. Thanks for the kind words on my hair, it’s still growing, but way too slow for my taste. Hoping my Naturopath can suggest a supplement to help with growth.

  • Michel

    Thank you for sharing your cancer journey with us through your website. There are so many people going through what you went through and I am sure that they are going to find your website very helpful and comforting.

    I loved your candid and honest approach to your hair loss issues and as a woman this must be the worst party of chemo, not to mention how terrible it makes you feel on top of that.

    Glad to hear your hair has grown back and you are on the way back to normalcy again. 

    • Jennifer Bedell

      As women, our hair is such a huge part of who we are as a person. It’s one thing to make the personal choice to cut your hair, or change your style, but when an outside source forces you to make a change, it is very hard to deal with. The worst was trying to keep my head warm, as I went through the worst of it during the middle of winter in New England. Every day is a new journey on figuring out what “normal” now is, because it is most definitely not what it was before cancer.

  • Rika

    Hi Jennifer,

    My heart goes out to anyone suffering from any serious illness, including cancer.  I know the last thing most people want is pity.  I don’t pity, I just wish you all the best and hope for a smooth recovery.

    I can honestly say this is the worst year I ever had in my life.  A good friend of mine had a mild stroke, my partner’s sister was diagnosed with multiple sclerosis and a couple of months later my partner was also diagnosed with MS.  To top it all my sister was diagnosed with pancreatic cancer and developed cushings disease from all the cortisone she took.

    My sister is the worst off and she battles every day with various symptoms.  She got herself also a wick this weekend.  I know it is also very difficult for her to deal with the hair loss.

    Do you maybe have any advice on wicks.  Is there no way to make it less itchy?

    Thanks for sharing your story!

    • Jennifer Bedell

      Oh my! I am so sorry to hear your struggles. It seems like when things happen, they all seem to happen at once. For us it was first my dad who had metastatic pancreatic cancer and Parkinson’s Disease, then one year later came my own cancer diagnosis. That was when I learned that cancer actually ran in my dad’s side of the family, when we all originally thought his cancer was due to Vietnam.

      I’m guessing by wick you meant wig? I’m assuming that was a typo. For me, majority of the itching was around the edges of the wig. I ended up using a cotton headband, similar to these: 6 Pack Cotton Headbands. It provided a soft layer between the edges of the wig, and the scalp. It helped, but would not eliminate the itching all together.  I spent the rest of my time, while not at work wearing a Cotton Chemo Cap. But it’s a matter of preference, as some prefer to wear the wig at all times to feel normal.

      If you have additional questions please feel free to ask.

  • Shannon

    First I want to say Congrats on being a survivor! Secondly the effects of chemo must really drag I see a lot of the patients in the clinic that I go to, and they all say the same. Losing the hair has more of a mental affect on them then the actual diagnosis. 

    When you finally decided to go to work wigless did you get any annoying questions? If so, how did you deal with them? A real good friend of mine who kept it a secret that she had cancer began wearing wigs, and I wanted to always ask her but never felt comfortable asking. Was I right in being reserved in asking or would it have been ok to ask?

    Thank you for sharing your story

    Shannon

    • Jennifer Bedell

      I guess I was lucky that most of the people I worked with already knew I was going through cancer treatment, so I didn’t really get any strange questions, although I did feel like I got weird looks from people that may not have known me all that well. I knew I was going to go through a lot of changes, and instead of keeping it a secret, I chose to share the information so it would be less of a shock to my co-workers, particularity those who I would only see in passing. I will say, I was still a bit self conscious that I would get strange questions, but my preparation ahead of time to let others know what was going on, helped prevent those questions from occurring.

      Everyone approaches their Cancer battle differently. Since cancer had already been such a huge part of my life with my dad’s metastatic pancreatic cancer diagnosis, I chose to be open about my journey. But for others, it’s a journey they choose to keep to themselves. It’s a very tough situation to be in, especially when you know something is going on, yet the person close to you is not willing to discuss it. Sometimes, it’s just better to let them know that you’re there for them if they ever need to talk, as sometimes the hardest part in the journey is having that shoulder to cry on. I was lucky to have my husband, as there were many days that the tears would not stop, as I had grown so tired of everything I was going through. I believe you made the right choice in choosing to not ask questions because the last thing you want to do is upset her further, when she’s already dealing with more than anyone can ever imagine.

  • Andrea

    I am so happy you are ok and happy now. I know very well from experience how it feels to go through chemo. I remember the days I felt like I wanted to give up but I found strength where I never thought I had. Thank God I am cancer free. Although I never had complete hair loss, my hair did thin a lot. Great article! Thanks for sharing your experience with us.

    • Jennifer Bedell

      Yes, I am so happy to be a survivor, although it was definitely not without it’s struggles. The amount of hair loss can depend on the types of chemo you’ve been prescribed as well as the stage of your cancer. I was more advanced, and my cancer also had an aggressive nature to it, so they had to hit it harder. Many of the choices I made in my journey were made in the hopes of never having to go through this again, as it is something I don’t wish on my worst enemy.

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