December 07, 2009

Hiding Missing Body Parts or Covering Baldness?

mannequin

It isn’t couth, compassionate, or politically correct to ogle over a woman’s breasts, whether they come in a pair or not.  Standing around the food table at a house party last night, I tried but couldn’t help steal glances.  I loved that the woman across from me had the audacity to walk through the world with a cute boob on the right, and a pancake flat space on the left.

The woman with a mastectomy and no prosthesis turned out to be S.L. Wisenberg.  She’s the author of The Adventures of Cancer Bitch, a book I have seen on the shelf next to my book in many stores.  We spent most of the evening by each others side talking about exercise, book readings, cancer fundraising, pink washing, and more.  I adored her immediately.

I learned that during cancer treatment, she nixed bandanas and wigs, walking through the world bald with ‘U.S. Out of Iraq’ written on her naked skull.

I’ve never been faced with the decision of prosthetics or head coverings.  Nobody can tell that I’ve had my thyroid and 66 nodes removed.  My scar is so faint doctors often have to search for in during check ups.  And while my hair has thinned significantly, radio active iodine does not cause baldness or hair loss associated with other cancer treatments.

I don’t know what I would do were I forced to part with my perky boobs or my hair.  And it isn’t my place to speculate on such decisions.  I have learned that with cancer, you never know what choices you’d make until you are faced with the reality for yourself.  Since I cannot speak from experience, I’d like to hear yours.

Have you lost a body part, become disfigured, or lost your hair due to illness?  How did it impact yourself image and what choices did you make about reconstruction, prosthesis, and baldness?  Have you ever met someone with one breast who did not get reconstruction and chooses not to wear a prosthetic boob?

Read more about adapting to a new body image in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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Comment(s)

  1. greyash Says:
    December 7th, 2009 at 5:00 PM

    I know several women who had reconstructive surgery, and one who went for prosthetics. She loves them and the ones who have surgery all have some kind of dissapointment with them. (wish I hadn’t done the nipples… whish I hadn’t done this or that…) Some of the women in my support group wear wigs, some wear scarves, some cute hats… most don’t just go bald, but one does. My husband is from Russia – his grandmother had one breast just cut clean off in the 70s and she doesn’t even wear a bra for the other one. She walks around with one saggy breast and it’s obvious she doesn’t have another one… I love her for it. I shows how strong she is. She also had her thyroid out and her scar is as bad as mine, though not as long or as big… I love that she leaves that out to see too..


  2. Carey Says:
    December 7th, 2009 at 7:13 PM

    Did NOT wear a wig. Scarves, caps, henna tattoo or nothing. I’m in the Planet Cancer materials bald.

    When I got breast cancer (cancer #2), I was prepared not to have reconstruction but they latest and greatest recon uses your own tissue (tummy tuck!) so I was willing to do it. Have no plans to do the nipples though….


  3. Cathy Bueti Says:
    December 7th, 2009 at 8:43 PM

    When I was diagnosed I initially thought I would not get any reconstruction after my mastectomy. But when presented with the TRAM flap where they use your own tissue rather than an implant I changed my mind. I have to admit that I was scared about how I would feel without any breast at all. Then I sat on the fence again about getting the nipple. At that point I think it was about not wanting another surgery. But I did get it done however I never went back to have the color tattooing done. I had just had enough of poking and prodding at that point. It is hard thought still 8 years later to look at my belly scars and breast scars each day in the mirror. Although the scars have faded the memories never do.

    As for the hair thing, when I was bald during chemo I wore wigs and bandannas. I never let anyone see me bald. I wish I had been able to. I always had huge self image issues which became much worse during my treatment. I wore my wig to work and when I went out with friends or on dates. I would wear my bandanna when I was home or around my family. The second I had enough peach fuzz to cover my head I ditched them both. I was no stranger to short hair as I had many super short hair styles over the years so that didn’t bother me too much.


  4. Anonymous Says:
    December 7th, 2009 at 9:23 PM

    How does having your intestine sticking out of your stomach rate on the disfigurement stakes? No more bikinis for me (used to really look forward to summers at the beach!)


  5. H Lee D Says:
    December 7th, 2009 at 11:06 PM

    No head coverings for me. I used to make a game of catching people twice who were looking at me (make eye contact, they’d look away, then catch them again a second later).

    I’m going through cancer hell. Why should I hide it? Let my bald head be a warning to you!

    My sister got married while I was in treatment and my mom was quite displeased that I went with my fuzzy head. I thought I looked fabulous :)


  6. Kairol Rosenthal Says:
    December 8th, 2009 at 1:29 AM

    Hi Anonymous with colon cancer. I’m wondering if you have seen the Colondar – a calendar in which each month shows a young man or women with colon cancer – many are in bathing suits or shirtless boasting their surgical scars and some with apparatus protruding from their lower abs. Here’s a link. I think it is pretty inspiring. http://www.colonclub.com/index.html


  7. Kate Says:
    December 8th, 2009 at 10:05 AM

    I wear falsies in public because both boobs are gone and without them I look pregnant. When I’m at home I tend to be boobless.

    My hair I lost twice and most of the time I went bare headed. My son was freaked out about the wig (the one we choose because it looked like my “old hair”, money wasted) so I wore it for about 2 minutes. He was five so I just had to go with it.

    I actually didn’t mind being bald but I think it made people around me who didn’t know me very uncomfortable. Sometimes I wonder if that’s part of why I did it. To show that young women get cancer and it’s not all ribbons and 5ks.


  8. Michelle Says:
    December 8th, 2009 at 2:18 PM

    The only visible scar I have is my port scar on my chest. 6 months after my chemo was done and the day before my birthday this year, I had a tattoo done to frame my port scar. Not cover it, mind you….just frame it. This is what I consider my badge of honor, and I love it. I wanted people to ask about the tattoo and, whether they knew it or not, my scar. It provokes conversation and throughts, and to me, it’s a gorgeous statement of taking a disease that kills SO MANY PEOPLE and putting my final butt-whooping on it. I think cancer scars and bald-ness are gorgeous – you are fighting for your life – you should be comfortable, not worry about how you look.


  9. danielle Says:
    December 8th, 2009 at 5:31 PM

    i was a cancer paitent in my teens so i got the hemming and hawing from my peers most of the time i wore a wig but sometime i did scarves and when i was in the hospital i was bald mostly i cut my hair short to help the issue that my hair was long and it was traumatic to loose it


  10. Jen Says:
    December 8th, 2009 at 5:46 PM

    I lost my hair (chemo) and, although I bought wigs and tried them on at home, I only wore knit hats or rocked the bald look (I found wigs to be so itchy and uncomfortable, and I was always self conscious wearing them, afraid that they would slip to the side/front/back or just plain look weird. I really embraced the inner “fuck you” when it came to my cancer. It somehow felt right that I should look outwardly a little punk rock when I was going through a time that was testing the limits of my strength and endurance.


  11. Kairol Rosenthal Says:
    December 8th, 2009 at 5:55 PM

    Jen – I’m curious to know if embracing an inner “fuck you” attitude was part of your nature prior to cancer. Had you ever sported the punk rock look before, or was this look and/or attitude a total departure from your normal way of being?


  12. Ginny Marie Says:
    December 8th, 2009 at 9:32 PM

    I wore hats all through chemo, but wasn’t brave enough to go bare-headed! I was a teacher, and some of the students in the school kept asking me why I was allowed to wear a hat inside and they weren’t! My own students were my champions, though, and drew pictures of me in my hats.

    I had a mastectomy, and still wear a prosthesis. My mom always did the same after she had a mastectomy when she was 40, and I was used to how a woman would look with one flat side. She wore a fancy beaded dress without her breast form to a hospital fund-raiser once…she’s my hero!


  13. Steve Says:
    December 9th, 2009 at 12:53 AM

    with my hodgkins, i didnt lose my hair, just my eyebrows, i was bumbed because i wanted to since i shave my head anyway,and i wouldnt mind, but others who are really self concience about it lose it….not fair if you ask me… but i do have a big ol scar from my whipple for Malignant insulinoma. I want to get a zipper tattoo for it…also have a nice scar on my head from my melanoma. looksa kinda gnarly but hey, what are you going to do….my scar from my parathyroidectomy makes me look like a human pez dispenser…..all in all….i kinda like my scars……in a weird way. they all represent stages in my life and things i have made it through.


  14. Pat Steer (Gaelen) Says:
    December 9th, 2009 at 7:00 AM

    Kairol, thanks so much for mentioning the Colondar!
    Now if next year, we could just select maybe ONE slightly out-of-shape, not-quite-hardbodied short girl… ;)

    I don’t think I need a zipper tattoo for my liver resection scars – the staples left their own ‘zipper’ still quite visible 4 years since its last use in 2006. All of my abdominal scars have been used twice, so I doubt they’ll fade much. I never lost my hair, but it thinned a lot and I cut it very short. I was prepared to be and go bald; having cancer isn’t, IMO, about worrying whether other people are ‘comfortable’ with my illness. And if bald is who I am at the moment, then I was prepared to be bald (although I did mourn my hair as it got thinner – now it’s come back thick and this time, curly.) And if it thins again, to the point where I’m bald, I LOVE the henna head tattoo idea! ;)

    Anonymous – having my intestine stick out of my abdomen was an adjustment, and it’s a self-image challenge I still experience five years after my colostomy surgery. But in a lot of ways, it helps to remember and be reinforced that the rest of the world only knows if I’ve told them. I just spent the weekend renting a room w/shared bath in a house in NYC – and while several of the people I met learned that I had cancer, it wasn’t until the woman from Australia and I were discussing my cancer treatments that ANYone knew I had a colostomy (only that my scans made me pretty tired and sick.) Since ours is a hidden body modification, WE’RE the ones who have to get to a place where we can cope with it. That might be easier (or harder) than having to confront stares.

    Ultimately, body modification or not, what any cancer patient has to live with is the same as what any other person has to live with – how we feel about and whether *we* can love the person looking back in the mirror.
    I’m not sure loving ourselves is harder with any individual cancer body modification – just different. Be well.


  15. anonymous Says:
    December 9th, 2009 at 4:28 PM

    I think everyone’s situation and comfort level are different. I always wore a wig in public. I work in a high-visibility job and I just did not want to deal with the stares and the questions, plus I wanted to keep my interactions with the public on a professional level. I hated the wig – hot, itchy and uncomfortable. My one concession was not to wear it at home, but as I live alone, the only ones who saw me bald were my cats.

    My biggest scar is not directly from the cancer but from a chemotherapy extravasation that was initially misdiagnosed. The tissue around the IV site was destroyed all the way down to the bone and I ended up having a chunk of my arm surgically removed, with a skin graft over what was left. It’s on the outside of my right arm, just above my hand, so it’s highly visible even with long sleeves. Most people are too polite to ask what happened, but I often see them looking at it and it drives me crazy.

    I have very hard feelings over how the injury was mishandled and the utter lack of accountability from the hospital. So this has not been a good scar for me to have – it’s a constant reminder of some very unhappy stuff. Reconstructive surgery is a possibility, I suppose, but it’s not clear whether my insurance will cover it – and even if it’s covered, I still have a $2,000 deductible. Anyway, it seems morally wrong to expect me (and my employer’s self-funded health plan) to pay for fixing something that was someone else’s mistake.


  16. Kairol Rosenthal Says:
    December 9th, 2009 at 4:49 PM

    I agree with anonymous that it is such a personal thing. It is easy to draw a line and say that it’s a proactive, hardcore, feminist stance to not wear a wig or to show off a scar or reveal a mastectomy. But to me the strongest women (and men) are ones who listen to themselves and act on their own personal feelings. And to the commenter, I’m so sorry for the miserable experience you have had to endure as a result of malpractice.


  17. Jen Says:
    December 9th, 2009 at 8:57 PM

    Kairol–I was definitely a little punk rock/alternative….back in the day (high school, part of college). At the time of my cancer diagnosis, I was just a Mom in my 30′s, one who tended to wear sweatpants to the grocery store and (messy, long because I was too lazy for haircuts) hair up in a ponytail. So, in a way, it was like a return to the person that I used to be. A going back to my roots, if you will. It felt good, in some weird way.

    Now, with my hair growing back in all crazy curly, I’m probably even *more* self conscious than I was when bald! Crazy me! I miss my old straight locks and wonder if/when my “old” hair will ever return.


  18. Anonymous Says:
    December 10th, 2009 at 6:46 PM

    I *hate* that ‘noone will ever know unless you tell them’ statement. I don’t care if everyone else is too wrapped up in their own business to notice my abnormalities, the problem is that I know I’m not normal every second that I’m awake. I don’t look down any more in the shower and avoid mirrors altogether until I’m fully clothed because what I see disgusts me so much. I’d give anything just to have my old body back, I’d trade in a long life for a good one any day!


  19. Alex Says:
    December 11th, 2009 at 9:59 AM

    I’m a two-time testicular cancer survivor with twelve years elapsing between losing “righty” and “lefty.” I couldn’t get a prosthesis at the time I lost righty so I proceeded to live the ensuing twelve years without. Dating was difficult and awkward, not because partners might be scared off but because I feared they would be. Any man will tell you that anxiety and fear are huge mood-killers where sex is concerned. I was lucky to meet someone about a year after my first TC who was 100% OK with this and we’ve been partnered ever since.

    Having a second TC changed things, though, not only from an outward aspect but from the need to have hormone replacement. I jumped at the chance to have prostheses for both sides put in. It might strike some people who have more obvious signs of loss to cancer (such as breast cancer survivors, needless to say) as superficial. But I think we each make decisions regarding reconstruction or prostheses based on where we are in life and what we need to feel good again. For me, it was important. It was bad enough I’d need hormone replacement for the rest of my life. There’s nothing I could do about that. But I was determined not to subject myself to the feelings of sexual incompleteness and awkwardness I had lived with for twelve years, only now even worse. I don’t regret it. The prostheses aren’t perfect and I obviously know they’re fake, which itself can be a confidence-killer. But at least I can feel that cancer didn’t take more away from my sexuality than it absolutely had to.


  20. Kat Says:
    December 15th, 2009 at 1:46 AM

    “I have learned that with cancer, you never know what choices you’d make until you are faced with the reality for yourself.”

    I love this line. So true…

    At first I was proud of my TT scar. Seeing it and not covering it up made me feel brave to have survived thyroid cancer. Lately however, it has been the opposite. I hate that every morning, the scare on my neck is the first thing I see. It reminds me that I’m not normal and that I’ll never be normal again. It reminds me of all the pills I have to take for the rest of my life. So nowadays, I cover it up every time with turtlenecks and try to forget…


  21. Samantha Gibson Says:
    December 18th, 2009 at 10:39 PM

    I just had a neck dissection in November. I know my scar will get better over time but I hate it. I hate the way it looks and can’t stand the touch of it. I feel like there is a rope choking me all the time. I live in Southern Caifornia and I don’t know how many more months I can wear a scarf. I joke with my husband that November is a perfect month for neck dissections because you can wear scarfs and turtle necks.
    One more thing. When I came home from the hospital my five year old son asked me if the Dr. had cut my head off and sewn it back on. My two year old was scared to death to look at me and my four year old just keeps saying “mommy it does not look like it is getting better.”


  22. Kairol Rosenthal Says:
    December 19th, 2009 at 1:20 PM

    Samantha – My neck scar is quite small but it still felt ropey and tight for quite a while. As a result I didn’t wear scarves or turtlenecks because I felt less constricted and more able to breathe without them. Some people swear by vitamin e oil on scars. I just used neutrogena face moisturizer with spf religiously every morning and my scar has faded quite a bit. Scars can take a really long time to heal. Sorry that the kiddo choir is remarking on beheadings! Hang in there. Kairol


  23. Carolyn Says:
    December 30th, 2009 at 5:34 PM

    Hey there. Just thought I’d throw in my two cents’ worth regarding hair loss during chemo. It’s six months later for me, and although I have about 3 inches of hair now, I still wear my wigs religiously and I still have a hard time facing my reflection without them, or letting anyone see me that way. I’ve always had long hair…and hands down, being forced to watch it all fall out in a few short days was the worst part of the whole experience for me. I couldn’t bear to cut it short or shave it off…hoping that maybe I would be lucky and it would only thin. But in the end I lost it all.
    Even the constant nausea and vomiting, the dizziness, the memory problems, ear ringing, losing my sense of taste, constant heartburn, surgeries, needle sticks, etc etc….it all would’ve been more bearable had I had hair. The fact that I did not was a constant reminder that I was sick…that I was going to be changed and affected by this for a long time to come. Except for my initial diagnosis, I can’t remember ever feeling more hopeless, more trapped, more defeated, then when I started losing my hair.
    I carefully researched and tried on many wigs…and found a certain brand that is very comfortable and realistic looking…(the Amore line by Rene of Paris) people often compliment my ‘hair’ and if I tell them it’s a wig they’re shocked. I work in Starbucks management, so I don’t really want questions or looks either from the large amount of people I deal with every day and it’s easier for me to wear a wig and forget about the state of my hair. I do wish I had my long hair back…I even keep dreaming it’s long again and then waking up to this short, gray streaked mess I’m left with.

    When I first started wearing wigs, it was a big adjustment. They felt foreign…I felt self conscious…going out anywhere was nerve wracking as I always wondered, can people tell? Are they looking at me? What if the wig moves the wrong way? But I learned that people really don’t pay THAT much attention…they couldn’t tell…the wigs stayed in place without fail…and then later, even if people did notice, so what? Should I feel bad or uncomfortable for being sick and losing my hair and then wearing a wig because of it?

    I agree with the comment about how each person has to do what’s right for them, what they feel comfortable with. I’ve had many people tell me to go without the wigs, (one even going so far as to accuse they are a ‘crutch’ for me…hey, when YOU have been in that position, THEN you can talk to me about it) but I am the one who would be walking around feeling self conscious and ugly…I am the one who would be dealing with it, not them. So most mean well and I appreciate it…but I need to do what I’m comfortable with, what works for me, what gives me some help in dealing with something I’m still devastated by.

    It’s amazing what people deal with, what people become accustomed to living with and just how brave they are. The human spirit is more resilient than we realize!

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