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.
Beth,
ReplyDeleteWhile 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
Brenda,
DeleteThank 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.
Beth ... I'm 3yrs out in April and this is the first time I have read anything like this! I would love to contribute to your book. I am going to email you. I didn't need chemo due to the early stage it was caught and 10-15 years ago, that would not have been the case. I had a bilateral with reconstruction (5 surgeries in all and possibly one more to come). I am relatively young and single. Oh, and at the time, I was unemployed. Isolated and dismissed doesn't begin to describe this --- even amongst other survivors. But I will add MY flip side of not having had chemo to what you've already stated: (1) I pray every day that the doctors were right and worry that I don't have the added barrier against a recurrence. Fortunately, the fear has dissipated, but it is still there at times. Yes, I was happy to have dodged the bullet but there was a downside ... (2) After my bilateral (while still going thru reconstruction) the medical team was also guilty of 'dismissing' me. Others I know have felt the same way. Here we are trying to cope with our new bodies and it's like, "okay, you're done" --- whereas women who go thru chemo have the support that comes with weekly visits and people taking all your vitals, etc. More reassurance that someone is watching out for the boogie man (i.e. cancer). Women who finish chemo go thru that re-immersion but imagine being shown the proverbial door just after your surgery. It was horrible and very few could relate to it.
ReplyDeleteWow. You have certainly had your share of pain -- emotional and physical. Your points are very well-taken, especially the one about being dismissed by your doctors. It must have been horrific to essentially be shown the door after your surgery. And you are right: people receiving chemo often tend to have that support through weekly/monthly visits.
DeleteI 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.
Beth...I did NOT lose my hair b/c I did not have chemo. I "simply" had a BMX and am on Tamoxifen. (Let's not even get into the fact that I am coming up to my 1-year BMX anniversary and I still have my tissue expanders...) My point is, I can relate because I heard the exact same thing as you: "Oh, you look great! You look healthy!" With the implication that if I look good, therefore I must be good. Or, if I look good, that's really all that matters! So therefore I must be well.
ReplyDeletePeople 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! ;-)
Renn,
DeleteI 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.
Beth, It's so ridiculous isn't it? I know people mean well when they say things, but still...it can hurt and it makes me sad you were hurt like that. When I was undergoing chemo, I was often told "well you look good." And I did lose my hair, so it's not that I really did look good, but rather somehow people still expected me to look even worse. I know I've certainly become a lot less judgmental about looks. Anyway, great post on something really important. Thank you so much for quoting me! I'm flattered indeed!
ReplyDeleteYes, Nancy, it is ridiculous. Thank you for your compassion and empathy, as always. I think people are in denial about others when it comes to illness. That's where the "You Look Good" comment insidiously works its way in.
DeleteThank you for writing a great post worthy of quoting!
Beth!
ReplyDeleteI 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....
AnneMarie,
DeleteDid 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.
Thanks for sharing this. It's interesting to me because I was one of the many who lost their hair. I never wore a wig, often didn't wear anything on my head, and even so, I had similar frustrations. Everyone commented on how I looked. I think when people say, "You look good," they are really saying, "cancer scares me so much and I'm so worried for you." They are grasping for reassurance in the face of something they just can't handle." Same when they say, "You are so brave." It leaves us alone with our suffering and fears. Isn't it so much nicer to hear, "Hey, I've been thinking about you. How are you doing?"
DeleteHi Amy,
DeleteYou 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.
This brings up some interesting thoughts for where I am right now Beth, albeit on a different journey. I guess it's the idea of matching the outside appearance with the inside turmoil. Since my mother's death and my miscarriage, I have been going through a prolonged phase of insomnia - with the result that I have permanent dark shadows under my eyes, and I look washed out and exhausted all the time. While I know I look a bit of fright right now, there is a part of me relieved that I look so bad because now my outside appearance is a truer reflection of my grief and despair and hopelessness at the losses I've endured over the past few months. There is another part of me that thinks how sad that society expects us to look a certain way to take us seriously in our grief, our pain and loss - whatever form it takes.
ReplyDeleteOh Marie,
DeleteMy 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.
Beth, I didn't have chemo, so I was fortunate enough to not lose my hair, but I so relate to what you're saying. People seem to think nothing happened to me or it didn't suck since I looked ok. They didn't understand, it's a process of many things and all tough to deal with. Just sometimes, I wish they would listen more to us instead of being so quick to judge. This whole thing just makes me sad. Great post, though!
ReplyDeleteYes, I agree, Stacey, that people are so quick to judge how we are feeling based on our appearance. I wish such judgements didn't exist, but I guess it's people's way of denying that anything went wrong. It makes me sad that others don't always listen like they should. Thank you for your thoughtful comment.
DeleteI was bald and chose to leave my head uncovered most of the time (except when playing orchestra concerts - I thought formal dress probably included hair for women). I also considered not having reconstruction because I wanted people to be shocked and frightened. I wanted them to be scared enough to stop whining about mammos & get one. But still, even without hair, I looked pretty healthy. I never had that sick palor. I looked robust, just bald. People thought it might be a fashion statement. Maybe I was playing in some avant-garde downtown band. And disturbingly, some men were turned on by it - maybe she's freaky!?!
ReplyDeleteA 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 brave, indeed, to leave your head uncovered. You raise a good point: that even when bald someone can look healthy. I mean, Sinead O'Connor was making a statement with her baldness, so why not others, right? However, like you say, people should be sensitive to the medical plight of others. I think they don't want to acknowledge our own pain and suffering. I like your quote: "If a woman is bald, there's a good chance there's a medical reason for it."
ReplyDeleteWow, you played orchestra concerts? What instrument(s) did you play?
I'm a violist - still am. My fitness business is a second bus. that I got into from my cancer experience, but I still play music as well.
ReplyDeleteJulie,
DeleteWow!! 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 had chemo which made me lose my hair but it never went away 100%, just on the sides. I never went bald. Wore hats. Bought what felt like millions. But I had breast cancer and never had any surgery because there was no primary tumour. Have felt almost guilty about that at times but it's fine. Glad I didn't have to have surgery but do find myself explaining that it wasn't my choice, wasn't that I declined to have it....
ReplyDeleteI had chemo which made me lose my hair. Never lost if 100%, just on the sides, the rest being stubble. Not sure if it was just cos of that but never walked around bare-headed. Bought a wig which I never wore. Bought what felt like millions of funky hats which I did wear.
ReplyDeleteHowever, 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....
Gillian,
DeleteI 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.
Gillian,
DeleteI just wanted to add something. For me, surgery was a lot easier than chemo.
Oh, Beth, another great post. Have I mentioned lately that I love you to bits?? I can so completely relate to this. Especially since my head of hair is one of the first things people often notice about me. I got sick of explaining to people that I didn't have chemo -- "How come you didn't lose your hair?" -- yes, people actually said that. Like we're not 'legitmate' cancer patients unless we do. Because of course, when you are treated for breast cancer, that's the first assumption people make, that you must have had chemo. Then, duh, I realized months later that I did, in fact, have chemo --- oral chemo, in the form of tamoxifen. So, now, if the subject comes up, that's what I say, if I'm so inclined. Or sometimes, I just get snarky...
ReplyDeleteThe 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
Kathi,
DeleteYou 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!!
What a great thought-provoking post, Beth! A few people did tell me I looked great when I had cancer the first time. I think they thought I must have had pre-cancerous lesions. They didn't see me with a scarf to cover my bald head because I wasn't bald. I had a (comparatively) full head of hair because of the chemo given me: CMF. But the second time I was diagnosed I drew a different response.
ReplyDeleteBefore 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
Hey Jan, thanks for your comment. Guess what, I had CMF too. And as we both know, hair loss is generally not associated with this beyond-brutal chemo treatment. I'm sorry you had to go through cancer twice.
DeleteWow. Thank you so much for this post, Beth! I found out I had breast cancer two years ago, and did not lose my hair either. My cancer was early enough in its stage, and also contained with in the breast tissue, so I didn't need chemo after my mastectomy. I've never heard anyone describe what I felt then like you have here. I did feel like no one took my cancer as seriously as they would have had I "looked" like I had cancer. I also wanted to share a link that has been really helpful to me throughout this whole cancer thing: http://onlineceucredit.com/edu/social-work-ceus-can - hope you might find it useful. I will be returning to your blog often! Loving your outlook on life.
ReplyDeleteHi Linda,
DeleteI'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!
With ovarian cancer I've lost my hair twice. And this time it is thinning to the point of THIN! Sadly, when the hair returns and because subsequent chemos do not cause hair loss, people think you are "well". That's okay...I am getting tired of explaining every side-effect of every treatment anyway. But you are right...if you have hair they think you are doing well.
ReplyDeleteI 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!
White Stone,
DeleteYou'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.