My hair loss journey from Stage 3 Classical Hodgkin Lymphoma, a type of cancer that starts in white blood cells.
My hair loss journey from Stage 3 Classical Hodgkin Lymphoma. Diagnosed in November, 2017. Currently 9 months in remission and counting thanks to immunotherapy and AVD chemo. Learn more about my treatment here.
My last chemo was August 9, 2018. I was notified I was officially in remission on May 1, 2018 prior to completing my full 6 cycles of chemotherapy.
One of the most difficult parts of the cancer journey is watching your appearance or the appearance of someone you love drastically change before your eyes. Watching my reflection slowly change was one of the most painful parts of my cancer journey, particularly losing my hair, because once my hair began to go, everything became SO REAL.
When clumps of my hair started to fall in the shower, I watched in horror as the amount slowly gathered by the drain. All my life, I have been blessed with thick, beautiful, healthy hair. I never in my life did I ever think I would ever have to worry about losing it… but there it was slowing going right before my eyes.
Where at one time my hair was so thick, I could snap a rubber band just with the sheer weight of my ponytail, now there was nothing I could do to stop the growing patches of my scalp that were beginning to show. I tried makeup to cover my growing roots from my last color months before my diagnosis. After all, I was going to lose my hair, what was the point of a touch up now? My hair was becoming a mess but it was the least of my worries. I knew in my heart holding onto it was a losing battle.
“Mommy, are you gonna lose all your hair?”
As a woman and a mom of three young children, losing my hair was one of the most gut-wrenching things I have had ever tried to explain to my children, particularly my youngest twins who were 3 at the time.
Once you find you or your loved one has cancer your thoughts immediately go to hair loss. Pictures of chemo patients you have seen in movies and on TV float through your mind. I know because it went through mine.
You start to search for all the remedies to counteract hair loss: Castor oil. Cold Caps. Extra biotin supplements. You cling to stories where others went through chemo and were fortunate to go through treatment and not lose all their hair.
I thought preparation of some sort was definitely a necessity. Once my diagnosis was confirmed, I got a couple books for my children to read to help them understand what our life was going to be like and most importantly what mommy was going to maybe look like for the next few months. One of the best books I got for my young twins was “Nowhere Hair” by Sue Glader which offers a wonderful way to explain hair loss to young children.
As much as I knew I could deal with my changing appearance by wearing hats and wigs, I knew mommy’s changing looks could be scary for my children so I wanted to be compassionate and considerate of their feelings too. I thought it would be best to let nature take its course and not try to do too much to prevent my hair loss. I decided I would shave my head if it became absolutely necessary, but I was hopeful that my thick hair would be able to weather the trauma of treatment.
Before I began treatment I had shoulder length thick wavy hair. Before I began my immunotherapy treatment I decided to cut it as short as possible, while still being able to pull it back into a ponytail.
During my three infusions of Keytruda prior to chemotherapy, I was fortunate not to experience any hair loss. The only hair loss I can attribute before I began chemo was likely an effect from all my scans prior to being diagnosed and then during the staging process.
The Hair Loss Begins
Most hair loss for patients having the AVD or ABVD chemo regimen like I had for my Stage 3 Classical Hodgkin’s lymphoma significantly increases by the 4th chemo treatment. I definitely noticed my hair loss picking up at that point. Many other lymphoma cancer survivors report hair loss starts after the second chemo treatment. I’ve also heard of people would did not lose all of their hair even with several cycles of chemotherapy. Other patients with RCHOP chemotherapy report different patterns of hair loss. Some people just reported extreme thinning. I believe I would classify as extreme thinning because I never ended up shaving my head during treatment. Once it got bad I started wearing wigs and had fun experimenting with different hairstyles.
The worst of my hair loss from stage 3 Hodgkin Lymphoma. This is the aftermath of 3 cycles of Keytruda immunotherapy plus 6 cycles of AVD chemo. 6 cycles = 12 individual chemo treatments.
A look at some of my different wigs.
Making the Most of My Hair Loss
Through the first part of my chemo, I made the most of my hair loss by wearing slouchy beanies and winter caps because my chemo treatment started in February in Chicago. However by midway through my treatment around May I knew I was going to need to consider starting to wear a wig.
The changing weather made wearing hats uncomfortable. I decided to look into my insurance benefits to see if they reimburse for a wig and surprisingly a wig was a covered benefit.
It’s important that hair loss in chemo takes many forms than just the hair on your head. It means hair anywhere is up for grabs. Leg hair. Eyebrow hair. Nose hair. Even those pesky other hairs women get. Which meant less shaving for once in my life. Sweet victory!
After having long, thick hair all my life one of the greatest blessings is now how must faster I can get ready. And how much money I can save on hair styling products because now I can share them with my husband. Always a silver lining.
Going through cancer has taught me time and again that even our most difficult seasons can bring many blessings if we know where to look. Sometimes, when we hardly recognize the face staring back in the mirror, that’s okay. It’s okay when that happens because I believe it means we’re in the midst of transforming into something better.
Losing my hair has helped me gain a new level of self-confidence. Never in my life did I ever think I would proudly rock this short of hair. I thought for sure I’d stay in my wig for months. But, as of right now, I’m also enjoying rocking a lot of hats too.
Hair loss is a journey for everyone, regardless if you are the patient yourself. It’s important to do what you feel is best, when you feel it is best. I learned there is no magic time table. But thankfully, I also learned hair grows back pretty quickly.
Hair Loss Resources for Cancer Patients
Real-hair wigs can cost thousands of dollars and are often only partially covered by health insurance, but there are ways to get wigs for FREE:
American Cancer Society: To support cancer patients undergoing chemo, the American Cancer Society offers brand new FREE wigs at wig banks and cancer centers around the country. Click Here and go to the “About Us” tab for resources in your area. Or call 800-227-2345.
Cuts Against Cancer: This nonprofit organization and foundation is dedicated to creating and donating free Medical Wigs for women and children who cannot afford to purchase a Real Human Hair Medical Prosthesis. For a FREEwig for anybody facing hair loss from any type of cancer living anywhere in the world, Click Here.
Friends are by Your Side: Celebrity hairstylist Martino Cartier founded this charity to help cancer patients get FREE wigs through a network of hundreds of salons across the US, Canada, Mexico, England and Australia. Click Here to see whether there is a salon in your area.
Lolly’s Locks works with wig providers across the country to connect cancer patients in need with high-quality wigs. Created in honor of Lolly Toll, who lost her life to cancer in 2012. Lolly understood the relationship between looking good and feeling good, and it was her wish to help those who could not otherwise afford a stylized wig. Click Here
EBeauty Community Inc.: Provides FREE wigs for cancer patients undergoing chemotherapy treatments. They also have a national wig exchange program through which you can donate wigs you no longer need to others who do. To request a wig or donate one, Click Here
HairToStay: This nonprofit offers need-based grants to offset the expense of scalp cooling systems for breast cancer patients in the US to minimize hair loss during chemotherapy. To learn more, Click Here
Good to Know
It takes at least six ponytails to make one wig. If your friends and family have hair to spare and want to help the cause, tell them about the Pantene Beautiful Lengths campaign that collects healthy hair to make FREE wigs available to cancer patients at the American Cancer Society’s wig banks. Donated hair must be a minimum of 8 inches long (measured from just above the elastic band of a ponytail to the ends). Click Here, or call 800-945-7768, for more details and where to donate.
Source: https://breastcancerfreebies.com/wigs/
Books to help children understand hair loss from chemo:
“Nowhere Hair” by Sue Glader
“Our Mom is Getting Better” by Alex Silver