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.

 

Taxotears Turns Ten

Later this year will be a bittersweet celebration for myself and many ladies from around the world. Bitter because it marks the anniversary of the birth of a highly successful support group that I have been involved with from the first day.

Ten years ago I found myself in a situation that not only shook me to my core, but also left me with the need to track down others that had been disfigured like myself. What was this disfiguration? The year before I had been given a chemotherapy drug, Taxotere, as part of my treatment for breast cancer. Instead of my hair growing back, as I was told it would, I remained looking like an orangutan—an ugly freak. My doctor told me that the drug company, Sanofi-Aventis, had informed him I was only the third or fourth person in the world that this has happened to! So there must be two or three others out there somewhere, and I vowed to track them down. I hadn’t banked on it being so easy.

The first lady I found was Pam, from Oklahoma, and we decided to find others and create a support group. Cynthia then joined us and she created a website for our group of monk look-a-likes. Little did we know in those early days, how successful the group would become in finding so many ladies. We are now a large, thriving global group, with a constant stream of new members. It’s a group none of use wanted to join and it comes with a lifetime membership.

Now on to the sweet bit.

This group is a safe place for all members, there’s nobody to judge us and accuse us of not being grateful for being alive, which happens to us constantly. These people hear us but do NOT listen to us. They don’t want to understand our message. So we know that when we lend a shoulder to cry on, sometimes just listen, tell our stories and share tips that nobody ‘gets it’ more than we do. What would we have done without this support group? I have no idea, but I do know it’s been an incredible help to us all. We might not be happy to be in this situation but we are sure as hell happy to have each other.

This week I was invited to be interviewed for a radio podcast show for “inspirational authors’ so I asked our members what the group meant to them. I would like to share some of their comments with you.

“This group has given me strength and courage.” — Pam

“This group means I’m not alone.” — Chrissy

“Ladies understand how I feel when no one else does.” — Susan

“I’m not a freak.” — Erica

“This group has taken me from a place of isolation and despair to a place of understanding, validation and most of all hope.” — Suzanne

These are just a few of the comments I received.

I will end this blog on that sweet note, not only sweet because of how we feel about our support group but because it’s a good excuse to have another slice of cake!
Happy birthday to the amazing ‘Taxotears’ group!

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

Erica: The Caption Contest

Screen Shot 2015-12-08 at 7.16.30 PMIt’s been over four years since Taxotere took my hair for good. And about four years since I read a harrowing story that’s haunted me ever since.

The story—true—was about a woman whose wig flew off suddenly in a gust of wind on a busy street. Someone ran after it and returned it to her while others watched. The thought of it still makes the few hairs on the back of my neck stand up. What could be more horrifying?

I told a friend how I worried about such a possibility. She said, “You’ve got a great sense of humor. Just think of a funny thing to say if that happened. Then you’ll be ready for it, and you won’t be so embarrassed.”

Great idea. Only years later, I still haven’t thought of a good line that I’d have the guts to say. Can you?

Think of it as a New Yorker cartoon caption contest for the follicly challenged. A bald woman on a city street is watching her wig fly off above her. People all around are staring at her. Calmly, she says to a woman next to her……?