During chemotherapy, I didn't lose my hair.
At the time, I was relieved.
But in hindsight, I wish I would have shaved my hair and eyebrows at the time. I would then have donned my bald head, forcing people to see breast cancer up close and personal.
Because my not losing hair caused many to turn a blind eye toward my credibility as a cancer patient.
While some people took my illness seriously, others did not. I looked like everybody else, so the ugliness of my disease was not apparent. These individuals should have been in tune with my suffering, but instead they perceived me as the poster child for the "good cancer."
The happy warrior.
The brave, heroic woman.
The every-stereotype-you-can-think-of happy cancer patient.
With my full head of hair, people could ignore the physical and emotional toll that breast cancer and its treatments heaped upon me.
Many told me I looked good (the standard, albeit awkward, line) -- but truth be told, I did look good. I had my hair, my eyebrows, my eyelashes. Oh, and I lost all that weight. Some told me they envied my figure. A few insensitive dolts told me how grateful I should be that I didn't lose my hair.
Yes, I. should. be. grateful.
I had a full head of hair. What else could a gal with breast cancer ever want?
Never mind I endured a grueling treatment of chemo and radiation during the same time period; never mind that while my particular chemo regimen didn't target my hair follicles, it targeted my digestive tract and I felt I was imploding; never mind that my cognitive dysfunction (aka chemobrain) caused me non-stop distress; never mind that it was so hard to put one foot in front of the other when walking slowly; never mind that I was beyond the point of illness; never mind that I had to be rushed to the hospital; never mind that I was scared of dying young.
Damn, I looked good.
Because people tend to judge a book by its cover. If you look well, you are well. And I looked very well, indeed.
I am not trying to diminish the experiences of people who lose their hair during treatment. I imagine it must be horrifying, and if it had happened to me, I would've been upset. I'm just expressing another point of view, one of a person whose treatment did not result in hair loss. The viewpoint of feeling isolated and diminished by others who didn't "see" me as ill.
And I want to end with a terrific quote from a recent Nancy's Point posting, where author Nancy Stordahl sums up the hair issue for those of us who did not lose hair from cancer treatment:
"I’ve discovered that hair loss is a sensitive topic even for those with cancer who have NOT lost their hair. Really, how can this be you might ask?
If you have cancer and still have your hair, you can’t really be all that sick, right?
Don’t you have to 'look sick' to really be sick?
Wrong."
Did anyone perceive you as not being sick even if you were? Feel free to share any of your or loved one(s) experiences.
I'm writing a book titled Calling the Shots: Coaching Your Way Through the Medical System. I am a professional writer and have published numerous academic and magazine articles, as well as an essay on my breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. I can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.
This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.
Comments
To add a comment to the original post, click here.
You must be signed in to post a comment.
Sign in nowWhile I did lose every hair on my body, I had a great wig, penciled in realistic eyebrows and used eyeliner & shadow which made me look like I had lashes. Every day I heard how great and healthy I looked. People were shocked that I missed a wedding and a family event because I had no energy. They just didn't get it. Cancer patients are supposed to fit the classic image of bald, sunken eyes and yellow skin. Like you, I'm grateful I did as well as I did, but most days, it took everything I could muster to just get by.
XOXOXO,
Brenda
Thank you for your comment. It is amazing how universal the old "you look great" comment is -- all while the patient is suffering unspeakable horrors. You are right: people don't get it; I think they don't want to get it.
People who haven't experienced cancer don't (in fact can't) realize that tho our "cancer" may not "look" physical (despite that going though cancer is aging), deep and lasting scars are interwoven everywhere on the inside of me. (Not to mention the scars I carry that only my husband sees). Our emotional trauma is disguised and even negated. And I'm not sure how to change that perception. So my usual reply to the fact that I look "good" is simply "Thanks." Even tho some days I would much rather hear, "Are you K? You don't look so good." Really!
Thanks for once again posting on a topic of great interest! ;-)
I didn't lose my hair either and my cancer was "minimized" because of it... The poisoning of my body that continues to haunt my life.... that doesn't count. What people can't see, they dismiss as non existent. Chemo is only chemo if you have no hair..... ugh.
Love this post....
I look forward to your e-mail. My book is already completed, but I would love for you to contribute by doing a guest posting on what it is like to not undergo chemo and how, in some ways, that posed a great challenge to you.
Your voice matters.
I never had tissue expanders, but I've heard nightmares about them. Yes, the whole "You look great" gets old really fast. Looks matter to people, and I think society likes to bury its head in the sand when it comes to illness. Someone who looks ill makes people uncomfortable. And I love your line: "Our emotional trauma is disguised and even negated."
So true, unfortunately.
Thank you for writing a great post worthy of quoting!
Did you get CMF? Because that was the chemo regimen I received, and although highly toxic to the system (what chemo isn't?), it tends not to make people lose their hair. I know someone on the #BCSM tweet chat had CMF, and I don't know if it was you.
Yes, the poisoning of my body is foremost on my mind...often. I try to live in the present, but I'm always wondering what chemo has done to it.
A little sensitivity!!! If a woman is bald, there's a good chance there's a medical reason for it. If you know someone has cancer, no matter how she looks, there's a good chance she doesn't feel great. And no, no one with cancer needs to be told they should be grateful - EVER!!!!
You are right, you know, about people's remarks really showing fear and concern. Like you, I wish more people would say, "I've been thinking about you and want to know how you're doing." I think our needs as patients are relatively simple. I know that when I was going through treatments, as simple e-mail saying "I'm thinking about you" would suffice.
Thank you for reading my post and commenting.
My heart goes out to you. I know that last year was a horrific year for you. The insomnia may be symptoms of the grief and depression you are feeling. I know when I'm under duress, sleep is the first thing to go. And I know what you mean about the outside matching the inside. It can be a relief.
I know what it's like to miscarry, and it's just awful. I grieved for a long, long time for the baby I loved. It is a really stressful time. And your mother's death is also a time of grief. You were hit really hard last year and going into this year.
We need to own our grief. Our culture often wants the grief to be over, especially after the loss of a loved one. People sometimes say insensitive things, even if they mean well.
My thoughts are often with you.
Wow, you played orchestra concerts? What instrument(s) did you play?
However, I had breast cancer but never had any surgery because there was no primary tumour. Glad I never had surgery.Grateful really. But do feel a little guilty in a way. Find myself explaining that I didn't choose not to have surgery....
Wow!! I admire people who can play instruments well. It turns out that the violin is my very favorite musical instrument!! It must feel cathartic to play.
I can understand the guilt, but in the grand scheme of things, you did what you had to do to deal with cancer. Each person's cancer is like a fingerprint, each treatment is different. If your doctors said no surgery was needed, then that was a good decision. There are people who had radiation but no chemo, and they feel guilty for not having chemo.
Cancer is cancer, and all treatment sucks. The diagnosis sucks.
I just wanted to add something. For me, surgery was a lot easier than chemo.
The fatigue, which is mostly invisible, is the worst thing about hearing people say, "Well, you LOOK good." Yeah. Really helpful when you're horizontal more often than you're vertical.
And Marie, I can also very much relate to what you said about grief. Honestly, I think there was a lot to be said for the Victorian custom of wearing black, at least an armband, if not an entire black outfit. Because it was an outward sign which you didn't have to explain, and people respected it.
xoxo, Kathi
Before cancer diagnosis I found it hard to believe that people would dismiss an illness because the patient doesn't look sick. But now I know better. A sad state of affairs. I hope we can dispel this myth (among the many others) at some point soon. XOXO
You getting snarky about those insensitive comments? Hard to believe. LOL
I'm finally getting around to responding to readers' comments. Have had difficulty writing since the deaths of Rachel and Susan. You are so right; people need to "see" illness, whatever that means, in order to believe you're sick.
The fatigue you describe is invisible to the general public. But it's so damn real. And you are right about Tamoxifen being chemo. People don't get it or they don't want to get it.
And I love you to bits, too!!
I'm so glad your cancer was in an earlier stage. So glad. Thank you for your nice comment. Yes, people are often in denial; they feel uncomfortable if people "look" sick, and they only like to see what appears to be a healthy person.
I'm glad you found the link helpful. I will check it out.
Glad that you left a comment and will be returning to my blog regularly. It's nice to have you as a reader!
I know too well that BC patients endure much in terms of treatment. Different treatments than ovca, but heavy-duty stuff anyway. I salute all my BC ladies for their courage and determination and celebrate with every remission and every good blood test. Bless you Gals!
You've been through so much trauma, and I can only imagine how horrible hair loss due to cancer treatment can be. Understandable that you are tired of explaining all of your side effects. Ovarian cancer patients are every bit as courageous as breast cancer patients, and I'm glad you left a comment.
Hang in there.