Locker-Room Phobia

(submitted by clergygirl) 

I’m not one to avoid going out if I don’t have make-up on.  I quite often throw on a coat over my PJ’s and slide in to some big boots to drive my daughter down to school.  I’m just waiting for the day that I, for some unforseen reason have to get out of my mint green mini-van at the school in front of professionally dressed parents in my old, well warn PJ’s with a pattern that resembles lucky charms. 

The day is coming.  And I am prepared.  Seriously. 

But here’s what I’m not prepared for.  Ever. 

It strikes a fear in me like no other.

Are you ready…..it’s THE LOCKER ROOM.  Yes, the locker room. 

I feel a bit like I’m back in 5th grade and you start to hit puberty and you realize you are changing, but aren’t sure changing is really ok, so you dread being naked in front of 20 other girls after gym class. 

It’s that kind of fear. 

Now, I’m not so fearful of the normal women’s locker room.  I don’t fear damaging anyone for life when they might see my scarred and nipple-less breasts, but I do worry about the shock factor.  Like, whao….I was not expecting that.  Because frankly, lets just be honest here.  Breasts without nipples is a bit scary.  

Even I was scared after my initial reconstruction.  It just looks, well, different.

But here’s what really gets me nervous.   The locker room at the water park in town where I take my kids, that’s what makes me nervous.  You see, my children are used to seeing my body.  But other children aren’t.  And there are no family changing areas there and no curtains to hide behind.  Just me, the locker room and young children all curious and wondering why I look so different.   I caught a teenage girl staring the other day.  And I’m quick.  Super quick.  You’ve not seen someone change from a bathing suit to a shirt as fast as I can.  The problem lies in how wet the shirt gets.

So the other day I came in to this locker room and started helping my kids get ready.  And there stood several women from my children’s school. 

Lovely.  Just lovely.

I am wrapped in a towel, I look horrible, dripping wet, and they are standing next to me chatting.  One of them says, “are you an Angling Mom?”  I look slowly at this woman and smile a nervous smile, as she proceeds to say “you drive a green mini-van.”  Yes, yes I say. 

I really want to melt in to the floor at this moment.

I can’t believe the predicament I’m in.  I have three children yelling and screaming at me to get their clothes.  And my kids, bless their hearts, don’t get it.  And Jeremy would get really angry if he thought I was being all self-conscious about my body in front of the girls.  So I’m draped in a towel in front of women that RECOGNIZE me.  Shoot.  What to do.  I did what any other laid back mother who recently went through reconstruction surgery for breast cancer would do.  I LEFT my children to fend for themselves and I found a bathroom stall to get dressed.  Thank goodness my 3-year-old didn’t run off. 

I just couldn’t bear to change right in front of these women who may/may not know I’ve had breast cancer. 

If I were being really truthful, this really is one of the hardest thing for me to deal with emotionally.  It sends me in to a pathetic emotional downer.  I dread it before we go and I dread it as we leave.   It takes me a day or two to recover. 

Until the next locker room trip.

But like everything else,  I will not let fear keep me from enjoying life.   I will conquer the locker room for the sake of my children’s water park adventure.  But man, am I so tempted to skip it. 

Can any other breast cancer survivors relate.  You’ll make me feel SO much better if you tell me you can.  Or better yet, overcame your locker room fear.

How long will it take for my hair to grow back?

by Lorri Steer at Terrible and Beautiful

These posts originally appeared on my blog a year apart.  It is my pleasure to bring them together as a whole  for you today.  Be forewarded:  this is an epic post! But I know this is just the kind of thing I would have loved to see when I was bald and waiting for my hair to come back.  It’s been exactly 2 years since I finished chemo.  I hope this is encouraging for you!

After this article published, I got a comment from a women who has permanent hair loss from treatment.  Here is her comment:Thanks for sharing your story. Losing your hair truly is one of the harder parts of cancer treatment. There are now a group of women who are experiencing PERMANENT hair loss after receiving the chemo drug taxotere. Some of us have moderate loss, some have severe loss, and one member hasn’t a single hair on her head and she is several years post chemo.We are trying to educate others about this possibility and have started a web site. If anyone reading here is experiencing permanent hair loss after chemo, please visit the web site: http://www.aheadofourtime.org

We are trying to collect information to share with the drug manufacturer so that the side effect can be properly studied and people can be properly informed of this possible side effect before they undergo treament.

Hair (mine, not the musical)

The First 12 Months

“But the hair on {her} head began to grow again

after it had been shaved.”

-Judges 16:22

It’s the tell-tale sign of a cancer patient:  the bald head covered by a scarf or baseball cap.  It’s not the cancer that makes her hair fallout, it’s the treatment.  But the bare head, especially on a woman in our society, proclaims the silent slogan, “There must be something wrong” or perhaps up here in Boulder, ‘What a fashion forward young woman she must be!”

Not all chemotheraphies cause hair loss, but most often with breast cancer patients, the drugs that are used do cause a “down to the day” predictable hair loss.  This can be one of the most distressing things a cancer patient goes through and so today, I want to take your hand and share my journey with you.  You may not agree that bald can be beautiful, but I want to share the re-growth process with you.  It takes a long time, but in almost all cases, your hair will return.

Here’s a photo of me just after my mastectomy before starting chemo.  While beneath my blouse there were raw scars and surgical drains, a casual observer would have no idea I was a cancer patient.  But that would soon change.

I had already cut my hair a bit shorter than it was in preparation for the inevitable.  Many of the cancer books recommend that you perform a preemptive strike on your hair by cutting or shaving it off before it comes out. They say it saves you the distress of finding it all in the shower drain one morning.I spoke with a young man who was having chemo and he vividly described to me the day he was sitting outside working on his laptop on a breezy day.  He reached up to scratch an itch on his head and saw clusters of his hair begin to fly away in the sky.  Within minutes, he had none.

That’s traumatic baldness my friends.

I went the prescribed method of cutting and shaving.  I invited my girls to cut Mommy’s hair.   At first they were hesitate but quickly realized what fun it was to watch Mommy’s hair fall in clumps to the floor.  Emma was 11 and Olivia was almost 5.  Ellen, age 15, wasn’t interested in helping and Daddy, age 40, looked on in distress grasping a broom.  He finally joined in at the end and helped with the final shaving.

I choose to shave between my first and second chemo treatment.  I probably could have waited a little bit longer, but I wanted to have some time to get use to being bald before I felt really sick from my next treatment.  I was kind of excited to see what I would look like bald and at first, it was kind of fun.  I still had my eyebrows and eyelashes so it really wasn’t that hard emotionally for me.  Knowing that my cancer was so advanced, it put the hair thing in perspective and I was focused on being glad I could have a treatment that would give me a good better chance at survival.

Here’s a photo (above) from when we first shaved me.  You can search the blog if you want to see more bald photos, but I really wanted to focus this post on the re-growth process.  Below is a photo of me at the end of treatment last January.  By then, my eyebrows had come out and most of my eyelashes.  I was bloated from treatment and it was admittedly harder to look at myself in the mirror because I didn’t look like me anymore.  The faint eyebrows you do see are drawn on with eyebrow powder.  The only nice thing about all-over hairlessnessis no waxing of anything needed!  Too  bad we can’t put in an order for what hair we want back and what hair we don’t!  I would have ordered nothing below my lower eyelashes!

This first regrowth photo (below) is exactly 6 weeks post treatment.  Hair goes through cycles of growth and one of the cycles is resting.  You can expect about a month to six weeks before the regrowth will begin to show.  Do no be surprised if you continue to loose eyebrows and eyelashes after treatment ends.  I found out this is common and 4 weeks after treatment was when I said farewell to my last four eyelashes.

I was so proud of that 5 o’clock shadow!  My hair was always dark but many women have their hair come back with different colors or textures.  A common manifestation is “chemo curl.”  Sometimes it’s apermanent change and sometimes it’s not.  As I write this a year out, my curl appears to have been temporary and is almost all gone now.

The photo above is at 10 weeks out from chemo.  It doesn’t seem much different from the one above, but in person at the time, I could tell the difference.  It’s hard to look back at my bald pictures.  I had lots of complementsabout how pretty I looked, but it’s painful none the less.  It’s actually even more painful to look back at my photos when I did have lots of hair.  Maybe by this time next year it won’t be so hard.

Here I am (above) rockin’ it at 3 months post treatment.  I still was wearing head covering in public but I was getting excited to see more and more hair returning.  I believe Mother’s Day was the first time I did a little sunbathing at a public lake with my hat off for a short while.  PSA:  always use hats and sunscreen on your head- I had a huge brown patch on my head where my part had been over the years that I discovered while bald.

This photo (above) is almost 4 months post treatment. You can see what a difference from 3 to 4 months.  I was starting to just wear caps out of the house and was quite comfortable at home without any covering.  I loved how my hair felt and it was so easy to wash and go!

Here’s a mini snapshot of me last June, 5 months out. I was no longer wearing any headcoverings generally.  This is when I had my first “haircut” from my old hairdresser who showed me how to use some gel and a blow drier to give my hair some shape and direction.  I was surprised I could do anything with it being so short, but I could.  She explained that the first re-growth after treatment is thin and damaged so by keeping the ends trimmed, I could relax some of the curl as well as having it look more healthy as it grew.

Ginger loved me anyway.  Her I am at 6 months post chemo.  People were starting to think I just had a cute, sassy haircut and it helped that Posh Spice got a Pixie at the same time.  Yep, that’s me, Fashion Queen!  I was most excited that by the time the girls started school again that new people wouldn’t see me as “the mom with cancer.”  My eyebrows were filling in nicely and my eyelashes had all returned but were very short, about half of normal length.

This is now 8 months post treatment. You can see I have entered what we call “The headband phase.”  If you want to grow your hair back out to any length, be prepared for a long awkward phase in the right direction.  This is where we who have lived through it suggest every manner of lotions, potions and clippies to tame the wild beast.  Again, it’s a good time for another trim if you don’t want to sport the telltale, “Post chemo Mullet.”  About this time I believe, was the first time post treatment that I added highlights.  They took nicely and I was happy to lighten my hair a bit for a change.

9 months post treatment, here’s me (above) doing someMyspace photos of myself while cooking Thanksgiving dinner and drinking wine.  I love embarrassing my children.  You can see, I now have the Pee Wee Herman look.

It’s time again for headbands as my hair continues to grow at 10 months post treatment. Looks a little dorky, but it also finally is starting to look like real hair.  I took to straightening my bangs to make them look longer.  It worked sort of…I’m sure I’ll look back and thing otherwise, but it made me happy at the time.  I continue to get haircuts to keep the back trimmed so the sides can catch up.

And here I am 11 months post treatment just the other day, no headband needed.  We met some strangers the other night at a dinner party and I mentioned off-handedly that I had been through cancer.  Not only was she going through cancer, she was wearing a wig.  You know we talked hair!  It takes a long time, but you hair will return and once again be normal(ish.)  I’m back to shaving and waxing and buying expensive hair care supplies.  My eyelashes are full length once again and my brows need constant upkeep like a garden full of weeds.  My bangs are almost in my eyes and I’m thrilled.  I think it’s almost time for another haircut and maybe some color…

The Second 12 Months

I only remember two dates in my cancer journey: August 28th, 2007 and February 5th, 2008. The first date was the day I found out I had cancer. February 5th was the day I finished chemo.  You’d think the date I lost my breasts would be seared in my mind, but it’s not. Maybe the day I finished active treatment with radiation, but no. The date I shaved my head? Not a clue. The moments I recall, the dates I do not. Except for those two.

Today marks 2 years since chemo ended. I remember the stark baldness, no eyebrows and only a dozen or so remaining eye lashes. I remember being so bloated, pale and weak. It’s taken me almost the whole 2 years to start feeling like my old self again and not just because of the hair. Only in the last month have I been able to stay up much past 9 pm and that’s hit and miss at best. I’m finally feeling a renewed sense of energy but it really last taken this long.

Growing our hair back is an awkward process. I promised an update so, here we go…

One year ago in February, I walked the streets of Paris sticking out like a sore thumb. Not because of my senior citizen hairdo – it was the checkered jacket.Pardon-maaaa, who knew all French women wear only plain black coats and tall black boots. No one sent me the memo.

By March (13 months post chemo) my hair was getting longer and had nice body. As a matter of fact, I did finally ditch this sweater that’s in half of the photos taken of me in the past two years!

Back view – I was loving the way it took color (the natural state is black with touches of grey.)

14 months post chemo. Above last Easter weekend. Hair was getting to that difficult stage again, not short, not long. Welcome back headbands.

15 months post chemo in May, I was starting to love the length and style of my hair. It was long enough to straighten and do things with but still held a nice wavy body.

16 months post chemo from the back again. Feeling fine!

By mid summer, about 18 months out, I started noticing that my hair was feeling very dried out and over processed. It got a little too reddish as you can see above. I started getting very interested in the “No Poo*” movement and switched to sulfate free shampoo (more on this another post.) *an alternative movement where women wash their hair with baking soda and vinegar instead of shampoo thereby returning natural shine, balance and strength to one’s hair.

19 months with a very livable style albeit a little messy – probably should have kept a few more layers but I was a bit obsessed with growing it out. Got the color rebalanced and felt more natural.

Around 20 months I was to a length that would have been normal for me. It was fun to play with but still too short to put up or do much with. I kept getting trims and color and enjoyed wearing it straightened or natural with the wave that was left.

This was the golden time for me – between 21 and 22 months post chemo I finally felt back in love with my hair. It was the first time I could look at photos and feel happy. I looked more and more like my old healthy self and it made me so glad. Updos and ponytails were almost a reality. I found a knock-off “Wen” cleansing conditioner product at Sally Beauty Supply called “Hair One.” My hair started feeling so much more healthy and soft. Things were falling more and more into place.

It was a little puffy but so what! It was almost long enough…

For a claw!!! Thanksgiving Day 22 months post chemoI was able to put it up for the first time. I was thrilled beyond belief! I’m sure those clips are a fashion no-no but again, I was so happy, I didn’t care!

23 months post chemo on New Year’s Eve and ponytails were becoming more and more my normal style. Throughout this regrowth process, I have always been protective over the length of my bangs to a fault so that my hair has looked a bit sloppy and overgrown, but those who walk this road understand. My hairdresser knows how important it is to me to keep the bangs long – nothing says “Post chemo hair” like those impossibly short bangs we get!

And my most current photo taken in January this year, almost 24 months post chemo. I had styled it with the straightener for a party. I’ll get some up to the moment shots of how it looks down on a regular day in a while.  The only on going issue I’ve had with it beside the dryness were the 2 spots where growth has been the slowest – at the temples. Just now – in the last month – they are starting to finally fill in. Bangs help hide those spots.

So there you have it – a epic post on hair regrowth. I know we have a lot more serious survivor issues, but I also know how difficult and long this regrowing phase can be.  If you are waiting for your hair to come back, I hope you are encouraged.  It will come!

Aromasin

(by Susan; crossposted at Toddler Planet)

I am so, so tired.

Unbelievably tired.

Tired in my bones tired.

New mom, breastfeeding, up all night tired.

Dissertation-writing graduate student tired.

Struggling writer finishing a manuscript tired.

But without the baby, the dissertation, the manuscript.

…

Three weeks ago, my oncologist switched my hormone supressing cancer therapy from tamoxifen to aromasin, an aromitase inhibitor. Aromasin, like Arimidex, which you may have heard advertised on the radio or at the 3 day walk, works to prevent recurrence of hormone-positive breast cancer by blocking the production and circulation of estrogen. Aromasin is recommended for post-menopausal women, while tamoxifen is best for pre-menopausal women.

Like most steps of my cancer journey, I fall into the long tail of women who are neither or both, as I was pre-menopausal (and 34) when this all started, but, after 6 months of chemo, 3 years of tamoxifen, and the removal of my ovaries, I am now utterly and thoroughly post-menopausal (and 36). Which hormone suppressant should I take? Nobody knows. There are no studies.

There are no studies.

There are many, many women who have become menopausal through cancer treatment, including many of my IBC sisters, who don’t have any scientific guidance on which hormone suppressant to take. We don’t know whether tamoxifen, which ravages a woman’s hormonal production and causes all kinds of unfortunate side effects (I’m not going to get graphic; my dad reads this blog), or aromasin, which does the same and in addition strips women’s bones of their strength, causing 40 year olds to develop osteoporosis and all of us to be tested annually for early detection, causes untold aches and pains where none were before, and generally wreaks havoc, will work at all for us. It’s not been studied.

So, like the good girl that I’ve always been, I take my medicine, say my prayers, and hope that one or the other (or both) works, and my body can fight off recurrence for a few more years, until I’ve gotten some projects under my belt, published my book, written and published a follow up, raised my children, and checked off some more things on my “bucket list,” all the while knowing that the medication is only “probably” going to work for me, and my sisters in this pre/post menopausal gray zone.

Oh, and did I mention that it causes insomnia?

I have not slept more than two hours at a time, three to four hours a night, in almost three weeks.

But I’m a good girl, and I take my medicine … and pray.

Have you had this experience with aromasin or arimidex? What has helped?

Best Kept Secrets in Head Coverings

By Lorri Steer at Terrible and Beautiful

me today two years post chemo with real hair

“Bald may be Beautiful” but it’s not always practical! When I was “Nudie Head Mommy” as my pre schooler called me, I had a lovely assortment of things to put on my cold little head! We had moved from California to Colorado just months before. I had thought living through a snowy winter would be my biggest test – little did I know living through cancer treatment would be!

I shaved my head in November. I wasn’t particularly ashamed of my Nudie Head but I was cold! One doesn’t realize how much our hair helps to keep us warm! I had a variety of things to put on my head: wigs, caps, scarves, and so on. I had a terry cloth turban (purchased through the American Cancer Society catalogue) that I wore to sleep at night (yes, very sexy, I know!) During the day, I preferred caps (a soft acrylic one from Walmart in a neutral color became my favorite.)

I imagine we have a few readers who are in the market for head coverings and there’s nothing like having at least one thing to put on that feels comfortable, secure and makes you feel beautiful. Here’s a few of my personal favorites:

4women These head coverings have sewn-in elastic plus coordinating scrunchies so not only do they stay on really well, there are also a bunch of ways to wear them. I have a cotton one but they also come in silk and many beautiful patterns, They’re not cheap, but I highly recommend them.

Buffwear I have another favorite brand of head covering that is also soft, practical and versatile. It’s the Buff sports wrap and has been one of my all time favorites during treatment. These are sportswear that work wonderfully for baldness.  They come in a wide range of colors and styles.  I purchased an unlined one for indoors and a polartech lined one for outdoors.  Long after I donated all my other head coverings, I still have these two.   The great thing about the Buff product is after cancer treatment, you can use it for outdoor sports, as a wide headband or even as a tube top (my Yoga-teaching skinny twin told me that one!)

Paula Young I had a variety of wigs but ended up using them only for special occasions. Wigs aren’t especially comfortable and for the price of a high quality one, you can purchase more flattering alternatives like the ones highlighted above. My favorite place to find well-priced, “good enough for temporary” quality wigs is Paula Young.  They have great prices and sales and some great colors too.  It’s also a fun source to look for new hairstyles as you regrow your hair – the Mrs. Roper 1970′s curly styles withstanding of course!

The American Cancer Society has a program where you can go to their local office and choose a free wig, scarf and hat from their wig bank.  I loved doing that but if you don’t have a thrift store gene, you might be turned off a bit.  I did find a brand new unused wig though in a fabulous red that I wore for my 40th birthday party.  The great part was you could go back and exchange the wigs, hats or scarves for a new one whenever you wanted to so your husband could have a blond one week and a dark, exotic lady the next!  It’s also a great place to re-home your collection when you are finished.  I don’t know about you, but for me, it felt  better thinking of my items blessing someone else in need than gathering dust in my closet and sending out bad “The Beast will come back” vibes.  This time of year there are lots of clearances on winter caps – keep your eyes open and you may be about to gather some great finds for yourself, friends in treatment or the ACS collection.

For most of us, bald is temporary and our hair will return.  I’m 2 years out from chemo and my hair is better than new – really! But on this snowy Colorado afternoon, I remember my hairless days and shiver a bit.  Covering our baldness isn’t always a matter of vanity – or lack of Cancer Pride –  sometimes it’s a matter of necessity! Anyone else have a favorite link for the Nudie Head Mommies?

An update

I posted on New Year’s Eve that they found a lump in my chest, and my worries associated with it.  Well I did end up having surgery last week – another surgery, I am sincerely sick of being cut- and I’m relieved to share that it was benign.  It was just fibrous tissue growing.  They didn’t think it was cancer going in but had to check.  I was relieved, but only slightly.  I am resigning myself to the fact that this is my life now.  I am now in the elite group that gets to say things like ‘oh this is just a little surgery’.  That’s what my oncologist said the week before when I expressed anxiety over it.  I suppose compared to the double mastectomy and hysterectomy I had, yes, it was just a little surgery.  I thought I would be happier when the surgeon called to tell me the good news, that it was not cancer brewing its ugly head again.  I was happy, but I couldn’t help feeling like I was just lucky to get a pass.  I couldn’t help but feel like, I’m Ok – for now.  I promise I’m not negative about my situation at all, I do feel very lucky most of the time.  I guess I’m only sharing my fears, how I really feel about it.  My 1 year diagnosis anniversary is in April, maybe as time goes on I will not feel as on guard as I do.  But – for now- I appear to be cancer free, and that is indeed something to celebrate.