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.

 

The Hair Follies

I’m really torn about this whole process—I hate using the word ‘survivor’ re: cancer. So many other people have to endure debilitating conditions every day, year after year, and their lives are such a struggle!!  We endure short-term treatment, and for the most part continue to live on relatively carefree. Those people would gladly sacrifice their hair if they could trade with us! Does our perspective make us all seem incredibly vain?

We live in a society in which a mole, crooked teeth or reddened skin is embarrassing and affects our self-esteem. Don’t we try to teach girls that self-esteem comes from what we do and who we are, rather than how we look? Are we just “talking the talk”? Do we not have more important issues to concentrate on? What happened to “beauty is only skin deep”?

That being said, I know we all worry about how this very obvious sign of health and beauty affects how we are perceived within old and new relationships—platonic and otherwise. Women accept me as I am—I have made several new friends since treatment—but am/are I/we worried about how men look at us?

To be perfectly honest, as a newly single woman, the answer would be a resounding “YES”!! If I wear a wig, I wonder, how do I tell someone I don’t have hair? If I don’t wear it, will I ever get a date again?

Does this angst surface because this breast cancer thing usually happens at a time when our bodies and faces are degenerating naturally and we feel vulnerable to our lost youth and the comparison to those younger, firmer, prettier and, well—more intact?

The cancer treatment speeds up that process tenfold and the medications we must take results in side effects our grandmothers may never have experienced!! How would we feel now if nature had just been allowed to take its course without a cancer detour?

I am still not sure—even if it was widely known that some patients’ hair would not grow back—that it should be a deciding factor for treatment. The body-altering surgery we endured is accepted without question. I guess the difference is that no one can see it.

I had such a dire diagnosis, I’m not sure I would go back and change anything. If sacrificing some hair keeps me alive, then so be it. I guess the big question is, “The chemo made me bald, but is it working?”

I’m 54, but look older thanks to the ravages of chemo, have little hair and can hardly move some days due to my medication. It’s difficult to realize that all this might be for naught. I am trying to live what could be the last few years of my life concentrating on important, rather than superficial things. Where is the hair issue on that spectrum…..???

Carol

Carol: The Chronicle of my Follicles

Jan 07—Diagnosed with 70% chance of mets; prescribed the harshest chemo available: 3 FEC/3 T (3 X Fluorouracil, Epirubicin and Cyclophosphamide/3 X Taxotere). Was told ALL my hair would disappear. Bought wig as pre-emptive measure

Feb 07—Hair loss from E and C of FEC chemo. This was the last time I had my real hair, eyelashes and eyebrows (and everything else, too!!)

April/May 07—Had 3 doses of Taxotere and anxiously awaited the return of my mane!

June/July 07—25 doses of radiation with a bolus, a thick pad on top of the radiation site to make me “cook” even better. Hair wasn’t sprouting at all; was told that could be due to the effects of radiation. Started taking Arimidex, which also affects hair growth—thinning and male pattern baldness is a common side effect. It has been blamed for my hair condition ever since.

August 07—Waited……

Sept 07—Had a little bit of hair and was tired of my wig—made me feel like I was still sick, so began going “topless”.

Oct 09—Still waiting. My hair has grown in a bit, but is only about one-quarter of the original. I have about half of my eyelashes and one-quarter of my eyebrows. No one was able to tell me why I didn’t have any hair and why it wasn’t growing, so I did more research. Found out about Taxotere side effects and discovered the group “Taxotears”.

The effect enduring baldness has had on me:

1. I don’t recognize myself in photos or when I see my reflection
2. I still look like I’m in treatment
3. I feel “exposed”, when I prefer to look “anonymous”
4. I would prefer to choose who knows my history rather than have it so obvious
5. I have had to resort to another wig, but it makes me feel fake. I feel better, but it’s not the real me either
6. I tried to make the best decisions to heal my body, but something else suffered in the process
7. I manage very well usually, but when I sit down and think about it (like now) it makes me cry.

Cynthia: The Bald Facts

RBB-B06144I always loved doing crazy things with my hair: red, black, asymmetric. Streaked. Short. Shorn. My hairstylist loved me. He’d give me a massage and a glass of wine and he’d get happy with the scissors. He could have shaved “Up Yours” on the back of my head and I would have laughed.

“After all,” I said. “It’s only hair. If I don’t like it, it’ll grow.”

That was before breast cancer. If I’d known what I know now, I would have gathered up those last scraps of hair from the salon floor like strands of gold.  As a lifelong athlete, I decided to approach treatment like training for a race—with perseverance, patience and a sense of humour. My new “training schedule”, was clearly explained to me: a partial mastectomy, six rounds of chemotherapy, plus 31 doses of radiation.

The chemo—a powerful cocktail of Taxotere, Adriamycin and Cyclophosphamide—would make me feel nauseous, my white blood cell count would plummet… and I would lose my hair. But my hair would grow back, they promised. And I would go back to normal—or at least a new normal.

Eight months after my chemo finished, I am as bald as a bean.
My doctors are perplexed. People try not to stare. I hide in the house on a sunny day.

“It’ll grow back,” console well-meaning friends. “Wear a wig,” others suggest dismissively. Finally, my oncologist—obviously a mad scientist—told me to rub garlic on my head. My sense of humour is running out.

“Do you have nose hair?” asked a curious friend.

“Let me check,” I said. Then he stared in disbelief while I, a well-mannered middle-aged woman, stuck my finger up my nose.

“No,” I said, after considerable excavation. “Nada—no ear hair, no eyelashes, no eyebrows.”

I used to want so much in life—so much stuff—but now I would settle for the simple gift of eyelashes. Hair is so much more than vanity. It’s protection. It’s warmth. It’s the very essence of femininity. My head, once a form of whimsical self-expression, is now a scar—a daily reminder of my disease.

So, love your hair… “long, straight, curly, fuzzy, snaggy, shaggy, ratty, matty,” as the musical “Hair” celebrates. “There ain’t no words
for the beauty, the splendor, the wonder of my… hair.”