How do I explain?

How do I explain hair loss to a toddler?

I’ve tried.  Believe me, I’ve tried.  I’ve tried to explain to 2 year old Widget that Mommy has very short hair now, and wears hats, and I’m still the same Mommy.  That soon Mommy will have REALLY short hair, or no hair, like baby Little Bear!  He giggles and thinks it’s funny.  Unless we’re headed to bed and I’m wearing my haircap and Buff.  Then he wants “Mommy!  Hat off!”  But I have to keep it on to collect the hair that falls out overnight, so it doesn’t make such a mess on my pillow.

The last two days have been different.  My hair … is falling out in clumps.  Big clumps.  So we’ve spent the days outside (so as not to muck up the house — like the first two days with a rescue dog! — for those of you who have fostered/adoped a dog from animal rescue, you know that no matter what you do, a new dog from the animal shelter is probably going to make a mess of your house in the first 48 hours.  So we typically spend much of those days outside if the weather is nice), on the hammock, mostly.

The chemo is working.  When chemotherapy acts on a person, it first slows the rate of fast-growing cells.  The most fast-growing cell in the body is a cancer cell.  The second is the hair follicles.  The third is mucus membranes, like those that replenish the mouth, nose, and throat. 

My hair is falling out in clumps.  When I run my hands through my hair, they come out looking like I just petted a stray Newfoundland.  If I grab a piece and tug, it comes out — with a couple dozen of its friends.  The hair comes out complete with follicle (for those of you who are curious, like my husband was), but no white marker on the end — because the skin has let go of the follicles, and they are no longer growing.

But they are making a mess of my shower!

So how do I explain this to my toddler?  So far, the best I’ve come up with is, “Mommy’s hair is going bye-bye.  Soon my hair will look like Little Bear’s!  But I will always love you.”

And I will.

Linky Love = Love for each other

Out here in the Blogosphere, we often joke about “linky love” when we link back to a blogfriend’s post, or when we give each other blogosphere awards.  It’s true, seeing someone link back to you makes you feel warm and fuzzy all over.  Today, I am up to my eyeballs in warm fuzzies.  I can’t tell you how good it feels to know that the word is getting out about inflammatory breast cancer!  Hurrah!  Women are hearing about the symptoms, and – more often than not – saying “I didn’t know.  Thanks.”  I’ve even read several comments from women who HAVE one or more of the symptoms and are going to their doctor this week.  AWESOME.  Early detection is critical.

Today, the linky love is going back to you — the ONE HUNDRED TWENTY-THREE of you (so far!) who have posted this post on inflammatory breast cancer or linked back here with a recommendation to read it.  You are wonderful.  You are amazing.  You are saving women’s lives.

Let’s keep it going.  If you’re new to this site and just appeared here via a link from someone else’s post, WELCOME.  Please lift the post about inflammatory breast cancer and post it at your web site.  You reach women I don’t reach.  You know women I don’t know.  You love women who need to know.  You don’t have to have a lump to have breast cancer. 

Just ask any of these women and men, who have posted the post or a link to it out of love for their friends and readers.

Chicken and Cheese – July 2007 http://chicken-and-cheese.blogspot.com/2007/07/blogging-through-it.html 

Pundit Mom – July 22 http://punditmom1.blogspot.com/2007/07/stealing-this-post-with-permission.html#links  

Depths of Despair – July 23 http://mydpethsofdespair.blogspot.com/  

Life Gives You Lemons – July 23 and July 24 http://snomel.wordpress.com/2007/07/23/this-post-stolen-from-whymommy/ http://snomel.wordpress.com/2007/07/24/still-stealing-from-whymommy/  

PT-LawMom – July 23, 2007 http://ptlawmom.com/2007/07/23/stealing-a-post/ 

Lost in Bohemia – July 23, 2007 http://ryver.livejournal.com/111031.html 

I Should Have Bred Iguanas – July 23, 2007 http://www.ishouldhavebrediguanas.blogspot.com/ 

Practice Living – July 23, 2007 http://practiceliving.wordpress.com/2007/07/23/aware/ 

Stimeyland – July 23, 2007 http://stimeyland.blogspot.com/2007/07/whymommy-in-stimeyland.html  

Hopes and Prayers for a Cancer Free Tomorrow – July 23, 2007 http://cancerfreetomorrow.blogspot.com/2007/07/why-i-walk-and-whymommy.html  http://cancerfreetomorrow.blogspot.com/2007/07/words-from-whymommy-about-ibc.html  

Hormone Colored Days – July 24, 2007 http://hormonecoloreddays.blogspot.com/2007/07/after-bit-of-internet-dating-im-leaving.html 

Running Home – July 24, 2007 http://runninghome.wordpress.com/2007/07/24/i-stole-this-post/ 

Playgroups are No Place For Children – July 24, 2007 http://playgroupsarenoplaceforchildren.blogspot.com/2007/07/inflammatory-breast-cancer.html 

Temporarily Me – July 24, 2007 http://www.temporarilyme.com/archives/446 

Cool Beans – July 24, 2007 http://coolbeansmama.wordpress.com/2007/07/24/you-dont-have-to-have-a-lump-to-have-breast-cancer/  

Healthy Living Equals Happy Families – July 24, 2007 http://healthylivingequalshappyfamilies.blogspot.com/2007/07/big-c.html  

No, Mommy – July 24, 2007 http://nomommy.blogspot.com/2007/07/inflammatory-breast-cancer.html 

Milkweed Hill and Beyond – July 24, 2007 http://milkweedhill.burdenfamily.net/2007/07/awareness.html 

Most | Least – July 25, 2007 http://mostleast.com/2007/07/24/inflammatory-breast-cancer/ 

D. Savta’s web log – July 25, 2007 http://drsavta.com/wordpress/2007/07/25/it-could-save-your-life/  

Moosh in Indy – July 25, 2007 http://mooshinindy.blogspot.com/2007/07/help-kick-cancer-in-keester.html  

Joy and Chaos – July 25, 2007 http://joyandchaos.blogspot.com/2007/07/serious-matter.html 

Mommy Off the Record– July 25, 2007 http://mommyofftherecord.blogspot.com/ 

Lavender Lily– July 25, 2007 http://lavender-lily.blogspot.com/2007/07/reposted-from-toddler-planet.html  

Crib Chronicles– July 25, 2007 http://cribchronicles.com/2007/07/25/i-stole-this-post/  

Useless Ramblings – July 26, 2007 http://jodiebsblog.blogspot.com/2007/07/blatant-plagiarism.html 

B & The Boy – July 26, 2007 http://bellwookie.blogspot.com/2007/07/uncertainty.html 

United States of Motherhood – July 26, 2007 http://unitedstatesofmotherhood.blogspot.com/2007/07/blog-roll-please.html  

Daily Thoughts of a Scrapbook Mom – July 26, 2007 http://scrappyd.blogspot.com/2007/07/inflammatory-breast-cancer.html 

Cakerwalkers – July 26, 2007 http://cakerwakers.blogspot.com/2007/07/did-you-know.html  

Quotes and Jokes – July 26, 2007 http://guruofmyhome5.blogspot.com/2007/07/breast-cancer-awareness.html  

Backwards on the Stairmaster – July 26, 2007 http://backwardsonthestairmaster.blogspot.com/  

Lawyer Mama – July 26, 2007 http://lawyermama.blogspot.com/  

… Whatever … — July 25, 2007  http://blushinbumpkin.livejournal.com/54070.html  

It’s an Insane World Out There – July 25, 2007 http://insaneworld.wordpress.com/2007/07/25/women-need-to-know-thisinflammatory-breast-cancer/  

Simply You Photography – July 25, 2007 http://simplyyou.blogspot.com/2007/07/give-your-support.html 

Don’t Take the Repeats – July 26, 2007 http://canapesun.blogspot.com/2007/07/one-in-eight-is-one-too-many.html 

Miscellaneous Adventures of an Aussie Mum – July 27, 2007 http://www.miscmum.com/2007/07/ibc-inflammatory-breast-cancer-public.html 

Working Momma 24/7 – July 27, 2007 http://workingmomma247.blogspot.com/ 

Mamma Maven – July 27, 2007 http://mamamaven.blogspot.com/  

ValueWit – July 27, 2007 http://www.valuewit.com/2007/07/whymommy-is-bre.html  

I Can’t Complain Any More Than Usual – July 27, 2007 http://imstell.blogspot.com/2007/07/plagarism-with-permission.html  

Reflecting – July 27, 2007 http://reflecting.wordpress.com/2007/07/27/yours-for-the-taking/ 

Whirlwind – July 27, 2007 http://mylife-whirlwind.blogspot.com/ 

Toddler Drama – July 23, 2007 http://toddlerdrama.com/2007/07/23/inflammatory-breast-cancer/ 

Mama Made – July 26, 2007 http://mamamade.blogspot.com/2007/07/appropriate.html  

Woman with a Hatchet – July 27, 2007 http://womanwithahatchet.blogspot.com/2007/07/steal-this-post-inflammatory-breast.html 

Magpie Musing – July 27, 2007 http://magpiemusing.blogspot.com/2007/07/inflammatory-breast-cancer.html 

Deal With It, Girls Rule! – July 27, 2007 http://dealwithitgirlsrule.blogspot.com/2007/07/must-read.html 

24/7 – July 27, 2007 http://24hours7daysaweek.blogspot.com/2007/07/inflammatory-friday.html  

DL Busse’s Journal – July 27, 2007 http://dlbusse.livejournal.com/52539.html 

Alissa’s Adventures – July 27, 2007 http://alissasadventures.blogspot.com/2007/07/awareness.html  

A Madison Mom – July 27, 2007 http://amadisonmom.blogspot.com/2007/07/i-stole-this-post.html 

Wendster’s Blog – July 28, 2007 http://wendsterblog.blogspot.com/2007/07/breast-cancer.html 

World of One Thousand Different Things – July 28, 2007 http://www.tagteamingit.blogspot.com/ 

I’ll Take Two of Those, In Pink Please – July 27, 2007  http://allthepretties.wordpress.com/2007/07/27/you-dont-have-to-have-a-lump-to-have-breast-cancer/  

Changing More than Diapers – July 28, 2007 http://cosbyfamily.wordpress.com/2007/07/28/please-read/ 

The Lady Speaks – July 28, 2007 http://palady.wordpress.com/2007/07/28/saturday-potluck/  

Mommyville – July 28, 2007 http://toddlerplanet.wordpress.com/2007/07/23/inflammatory-breast-cancer/   

Breastfeeding Mums Blog – July 28, 2007 http://breastfeedingmums.typepad.com/breastfeedingmums_blog/2007/07/breast-cancer-w.html  

A Journey of 1,000 Stitches Begins with Just One – July 28, 2007 http://journeyof1000stitches.blogspot.com/2007/07/please-read.html 

The Ramblings of a Woman – July 28, 2007 http://quiskaeyaskorner.blogspot.com/2007/07/public-service-announcement-story-of.html 

The Stallworth Family – July 28, 2007 http://thestallworthfamily.blogspot.com/  

Musings of a Crunchy, Domestic Goddess – July 28, 2007 http://crunchydomesticgoddess.com/2007/07/28/you-dont-have-to-have-a-lump-to-have-breast-cancer/ 

Thoughts and Stitches – July 28, 2007 http://thoughtsandstitches.typepad.com/home/2007/07/you-dont-have-t.html 

The Whole Family – July 28, 2007 http://thewholefamily1.blogspot.com/2007/07/inflammatory-breast-cancer-you-dont.html 

Mama DB – July 28, 2007 http://mamadb.blogspot.com/2007/07/inflammatory-breast-cancer-educational.html  

Slouching Mom – July 28, 2007 http://www.slouchingmom.com/2007/07/ibc-if-you-dont-know-what-it-stands-for.html 

Laura William’s Musings – July 28, 2007 http://laurawilliamsmusings.blogspot.com/2007/07/inflammatory-breast-cancer-awareness.html  

Law & Motherhood – July 28, 2007 http://www.lawandmotherhood.com/2007/07/steal-this-post-inflammatory-breast.html 

Radiant Twist – July 28, 2007 http://www.radianttwist.com/?p=282 

Do you not know what causes that?  – July 28, 2007 http://doyounotknow.typepad.com/dont_you_know_what_causes/2007/07/inflammatory-br.html 

My Photos and Creations – July 28, 2007 http://mandisphotos.blogspot.com/2007/07/cancer-sucks.html  

Living and Loving Every Minute of it!  – July 28, 2007 http://livingandlovingeveryminuteofit.blogspot.com/2007/07/breast-cancer-touches-so-many-lives.html 

Southern-Fried Chicky – July 28, 2007 http://southernchicky.blogspot.com/2007/07/c-word.html  

Vivacious Vegan – July 28, 2007 http://vivaciousvegan.blogspot.com/2007/07/you-dont-have-to-have-lump-to-have.html  

The Ramblings of a Woman – July 28, 2007 http://quiskaeyaskorner.blogspot.com/2007/07/public-service-announcement-story-of.html 

Maya’s Mom | AmyGeekGirl – July 28, 2007 http://www.mayasmom.com/journal/amygeekgrl/47622/you_dont_have_to_have_a_lump_to_have_breast_cancer 

All Mom Health – July 29, 2007 http://www.allmomhealth.com/2007/07/this-information-could-save-your-life.html  

Surviving in the Kitchen – July 29, 2007 http://survivinginthekitchen.wordpress.com/2007/07/29/read-it-now/ 

My Name is Mommy – July 28, 2007 http://bunky.typepad.com/my_name_is_mommy/2007/07/inflammatory-br.html 

Hank and Willie – July 29, 2007 http://hankandwillie.wordpress.com/2007/07/29/breast-cancer-not-just-for-lumps-anymore/    

The Adventures of Mr. T – July 29, 2007 http://adventuresofmrt.blogspot.com/2007/07/please-pass-this-on.html 

Phobia of Shae – July 28, 2007 http://phobiaofshae.livejournal.com/ 

Fertile Mertile – July 29, 2007 http://fertilemertile.com/?p=462 

Sunny Days at the Beach – July 29, 2007 http://sunnydaysatthebeach.blogspot.com/2007/07/spreading-word.html  

Baa Sheep – July 29, 2007 http://baasheep.livejournal.com/44713.html 

Surviving – July 29, 2007http://surviving.wordpress.com/2007/07/29/read-it-now/ 

5 Minutes for Mom – July 28, 2007 http://www.5minutesformom.com/2038/toddler-planet-inflammatory-breast-cancer/  

Boo Mama – July 29, 2007 http://boomama.net/?p=1436  

Looky Daddy– July 25, 2007 http://www.lookydaddy.com/weblog/2007/07/odds-and-ends.html  

All Things Angela – July 23, 2007 http://angelamott.blogspot.com/  

All’s Quiet on the Home Front – July 23, 2007 http://allsquietonthehomefront.blogspot.com/2007/07/inflammatory-breast-cancer.html 

Life as I know It – July 24, 2007 http://princess421.blogspot.com/2007/07/breast-cancer.html 

Are We There Yet? – July 25, 2007 http://toafk.blogspot.com/2007/07/dont-take-repeats-team-whymommy.html 

Dawn’s Site– July 25, 2007 http://2shews.multiply.com/journal/item/62 

Cootie Chronicles – July 27, 2007 http://cootiechronicles.blogspot.com/2007/07/go-team-go.html 

Gaining Balance – July 25, 2007 http://gainingbalance.blogspot.com/2007/07/dont-be-boobie.html  

Mumblngs of Me – July 27, 2007 http://mumblingsofme.blogspot.com/2007/07/team-whymommy.html  

Totally Random Mom – July 27, 2007 http://totallyrandommom.blogspot.com/2007/07/two-posts-on-one-day-why-yes-that-is-me.html  

Come on Along! – July 27, 2007 http://mythreeblogs-alm.blogspot.com/2007/07/inflamatory-breast-cancer.html 

Stay at Home in Suburbia – July 26, 2007 http://stayathomeinsuburbia.blogspot.com/2007/07/critical-info.html 

Burgh Baby – July 25, 2007 http://www.theburghbaby.com/2007/07/lets-talk-for-minute.html  

Common Mom, Uncommon Sense – July 28, 2007 http://commonmom.com/health/inflammatory-breast-cancer/  

Faith Lifts – July 28, 2007 http://www.5minutesformom.com/faithlifts/2007/07/28/why-am-i-rushing/  

The Truest Thing – July 28, 2007 http://thetruestthing.blogspot.com/2007/07/strength-in-numbers.html 

Love, Life, Family, and then some – July 28, 2007 http://quietromance.blogspot.com/2007/07/everyone-should-read-this-post.html  

Ravelry (beta version; password protected) 

Magical Rose Garden – July 28, 2007 http://magicalrosegarden.com/2007/07/28/spotlight-on-toddler-planet/  

Right Truth – July 28, 2007 http://righttruth.typepad.com/right_truth/2007/07/a-15.html

Knitting on an Island – July 29, 2007 http://guernseygal.typepad.com/knitting_on_an_island/2007/07/thank-you.html 

FluffyKnitterDeb – July 29, 2007 http://fluffyknitterdeb.blogspot.com/2007/07/because-knowledge-is-power.html  

Grasshoppers | Ning – July 29, 2007 http://grasshoppers.ning.com/forum/topic/show?id=901776%3ATopic%3A2882 

Two Boys and a Girl – July 25, 2007 http://clmama.typepad.com/me_my_boys/2007/07/a-plug-for-a-re.html 

MamaLaw – July 25, 2007 http://mamalaw.blogspot.com/2007/07/im-stealing-this-post.html 

About.Com: Pregnancy and Childbirth – July 26, 2007 http://pregnancy.about.com/b/a/256563.htm 

My Two Shews – July 25, 2007 http://twoshews.blogspot.com/2007/07/sad-and-hopeful-oh-and-boobies.html 

Gigi Designs – July 30. 2007 http://gigidesigns.blogspot.com/2007/07/breast-cancer.html 

Quantum Leap – July 29, 2007 http://gretchen-quantumleap.blogspot.com/2007/07/frisk-15th-cancer-sucks.html 

Barbara’s Tchatzkahs – July 29, 2007 http://barbarany_9.blogspot.com/2007/07/inflammatory-breast-cancer-in-support.html  

A Faeryland Mom’s … Something – July 29, 2007 http://faerylandmomsomething.blogspot.com/2007/07/linkage-baby-linkage_28.html  

What Works for Us – July 23, 2007 http://whatworksforus.blogspot.com/2007/07/breast-cancer-awareness.html 

Adventures in Babywearing – July 29, 2007 http://adventuresinbabywearing.blogspot.com/2007/07/yeah-right-like-i-could-stay-away.html

(If you’d like your site to be listed here, GREAT.  Just leave me a comment with the link to your post about IBC so I can find you.)  Thank you!

Saturday night

In real life:  Pain, pain, pain.  In bed again, trying to forget the pain and wait patiently for the oncologist’s office hours on Monday.  And yes, my hair is still falling out.  It will probably take a few days to weeks for me to go completely bald.  Not much else is new.  I’m just stiff on my right side, elbow to skull, and the pain spasms occasionally, even through the meds.  So I’m trying not to think about it. 

In Second Life:  Dancing, without a care in the world.

Even the Second Life version of the BlogHer Conference has awesome social events!

Because I’m not ready to move on

Because I’m not ready to move on, I’m reposting this tonight to put it front and center.  The word is getting out.  The post is catching on.  It’s been on 40 60 blogs so far this week, and counting.  I’ll tell you where it’s been and post a roundup with links later this weekend so you can visit these lovely women (all women so far, except for Looky, Daddy!) if you like.  They are all beautiful.

If you haven’t posted this yet, please feel free to copy and paste it at will.  Your blog reaches places and women that mine doesn’t.  Your blog can be part of this effort to save someone else’s life. 

Thank you.

— 

We hear a lot about breast cancer these days. One in eight women will be diagnosed with breast cancer in their lifetimes, and there are millions living with it in the U.S. today alone. But did you know that there is more than one type of breast cancer?

I didn’t. I thought that breast cancer was all the same. I figured that if I did my monthly breast self-exams, and found no lump, I’d be fine.

Oops. It turns out that you don’t have to have a lump to have breast cancer. Six weeks ago, I went to my OB/GYN because my breast felt funny. It was red, hot, inflamed, and the skin looked…funny. But there was no lump, so I wasn’t worried. I should have been. After a round of antibiotics didn’t clear up the inflammation, my doctor sent me to a breast specialist and did a skin punch biopsy. That test showed that I have inflammatory breast cancer, a very aggressive cancer that can be deadly.

Inflammatory breast cancer is often misdiagnosed as mastitis because many doctors have never seen it before and consider it rare. “Rare” or not, there are over 100,000 women in the U.S. with this cancer right now; only half will survive five years. Please call your OB/GYN if you experience several of the following symptoms in your breast, or any unusual changes: redness, rapid increase in size of one breast, persistent itching of breast or nipple, thickening of breast tissue, stabbing pain, soreness, swelling under the arm, dimpling or ridging (for example, when you take your bra off, the bra marks stay – for a while), flattening or retracting of the nipple, or a texture that looks or feels like an orange (called peau d’orange). Ask if your GYN is familiar with inflammatory breast cancer, and tell her that you’re concerned and want to come in to rule it out.

There is more than one kind of breast cancer. Inflammatory breast cancer is the most aggressive form of breast cancer out there, and early detection is critical. It’s not usually detected by mammogram. It does not usually present with a lump. It may be overlooked with all of the changes that our breasts undergo during the years when we’re pregnant and/or nursing our little ones. It’s important not to miss this one.

Inflammatory breast cancer is detected by women and their doctors who notice a change in one of their breasts. If you notice a change, call your doctor today. Tell her about it. Tell her that you have a friend with this disease, and it’s trying to kill her. Now you know what I wish I had known before six weeks ago.

You don’t have to have a lump to have breast cancer.

P.S. Feel free to steal this post too.  I’d be happy for anyone in the blogosphere to take it and put it on their site, no questions asked.  Dress it up, dress it down, let it run around the place barefoot. I don’t care.  But I want the word to get out.  I don’t want another young mom — or old man — or anyone in between — to have to stare at this thing on their chest and wonder, is it mastitis?  Is it a rash?  Am I overreacting?  This cancer moves FAST, and early detection and treatment is critical for survival.

Thank you.

Goodbye, hair!

I’ve always loved my hair.  My best feature, I’ve worn it long and loose most of my life.  It’s full and thick and looks pretty decent in a simple cut, brushed straight, swinging about.  Some years I’ve worn it short, in a chin-length bob, but always, always parted on the side.  It’s the only thing I really like about my face, actually.  The only thing that makes me feel … like me.

Three days ago, my scalp started tingling.  I wondered at the time if that meant my hair would begin to fall out, but I didn’t lose so much as a strand for days.  Then, today, in the shower, I smoothed it back with conditioner, and … a clump fell out in my hand.  Shocked, I smoothed the other side back.  Same result.  (Duh.)  So there I stood, with two handfuls of hair, and that much less on my head.

I know I said that I was ready for my hair to fall out, but I don’t think I was quite ready to see it happening.

After I dried off, it was time to take action.  I found the hairclippers and shaved my head.  No, it’s not all gone, but I did give myself a close-cropped boy-cut so that as the hair falls out it doesn’t pile up everywhere and make a mess of things.  The cut is rather cute, actually.  I might wear it like this for a while when my hair grows back in in January.

My oncologist told me that two weeks after I started chemotherapy, my hair would begin to fall out.  My first chemo treatment was two weeks ago yesterday.  Right on schedule.  I hope that all of my responses to chemotherapy are so textbook.  I hope that these chemo drugs are effective at squashing the cancer, and I hope that they shrink the cancer so much that I will be able to have the surgery in January as planned.  I hope.  I hope.

I pray.