Starting Chemo May 2008

Cristine--I am supposed to have class on the day of chemo. My oncologist(in Peoria) only travels to Ottawa on wednesdays for treatments.  My ER is stated weak+, PR-, and HER2-.  What is the HER stand for?

Rock--I will check out the list you updated, thanks.

Otter, I think that you just nailed it in more ways than one, at least for me.

Everything that's been said is true. But there's another element that's bothering me.

I could ignore the lump.
I could not schedule a mammogram.
I could blow off the biopsy.
I could walk away from the surgical consult.
I could not show up for the surgery.
I could veto the re-excision.
I could opt out of chemo.
I could decline these particular drugs.

But now, right now I have no say. Now my hair is falling out whether I want it to or not. It is falling out today and tonight and tomorrow. I can't cancel. It's just happening. And I don't get to have a say. I have no say at all.  And that is really, really getting to me.

Oh, the hair thing.  Just went shopping for hats and headcovers.  Yuck.  Took me an hour and a half to buy 4 and this is at least the fourth time I've looked. 

Otter - I'll run with that.  It is a part of our self.  When babies are born (if they are bald) don't we wait to see what color/texture their hair will be?  We know that doing things to our hair changes our appearance and impacts the way we are perceived by others.  Usually we are in control of that change and choose to do it.  However, our hair loss is a double whammy (that's a technical term) as we don't want it/didn't ask for it and we know it will affect how we are viewed or treated by others. 

Part of the anxiety is that it creates another unknown - we know people will be affected, but not necessarily how.  Disdain?  Pity?  Heckling?  Sympathy?  Fear?  Pick one - pick them all.  We may experience all of those.  I talked to someone yesterday who said her dd was teased because of her mom's hair loss.  That's anxiety producing. 

One more piece and then I'll stop.  I promise I won't do this too often, but I'm on a roll here.  It's also another loss.  On top of however many we may have had so far.  And it needs to be grieved in whatever way that makes sense to you.  Cry, scream, shave it off, pull it out, have a glass of wine, bowl of ice cream, go to bed.  Whatever works.  Acknowledge it somehow. 

Rock, my friend, I hope you find your way to grieve.  I'm standing alongside of you.

It sounds like this is where I need to be. Diagnosed 4/17 (day befor my 55th b'day. I get PICC line 5/28 and start chemo 5/29. I'm IIIB, ER+PR+, HER-. I'll be getting Adria, Tax???and cytoxin, then surgery then rads. Mostly I'm doing ok, but the terror sneaks in from time to time. Mostly I'm afraid I won't be able to keep working and if I can't my family and I will end up homeless, so...

I like the overall positive attitudes here, that's what I need to hear. Thank you all for the courage to share.

Rock, gentle hugs to you.  It does make you feel out of control.  My first time on chemo, I was astonished when my hair fell out in huge clumps, EVEN THOUGH I'd been told it would, it just felt so funny and dead and surreal, like these things happen to other people in movies.  (Then I was on dd TAC).  When my hair came back, I was mad because it came back just like before:  thin, baby fine, straight.  NOW, I can't wait for it to fall out so I can go back to not shaving my legs and not washing my ugly hair, and the d*** stuff won't go!  It is just wafting down one little hair at a time, and I've already completed 3 treatments; the nurse said it'd probably go after one or 2...wth????  So...just a little rant...

I'd written a long note about my dip in the pool on Friday while I was in the treatment room because Clearwire, a WiMax type internet service, has provided free internet for the room...nice, until someone bumped the modem and service was lost. 

I never know my blood counts, they only say I'm ok to go for treatment or not...

My onc. says I no longer need the hour of hydration w/ electrolytes after the Cisplatin due to a new study he read, so that shortens my treatment time considerably.

still having trouble sleeping because of the 'roids, I guess.

I'd like to call everyone by name, but please know you all are in my prayers.  What a wonderful group of ladies.

I think otter hit it on the head about the hair, but at least in my case I grew to like having no hair in a lot of ways, if it's any consolation at all.  I hope ALL of you get BE-YOU-TEE-FULL  hair back!

dana

Dana - ARRRGH!  That's how I'd feel if I'd typed out a long note - live from the chemo room, no less - only to have it disappear. 

On the hair thing, I did OK with the early stages.  I've never been that fond of my hair, don't like fussing with it and am just not good at it.  So getting it cut super-shockingly-short after my first treatment wasn't a problem.  It looked cute, like Jean Seberg's in Breathless.

When the actual hairfall started, I treated it as a kind of party trick: "hey, check this out!" (yanks out handful of hair).

Eventually, I got to that thin-sickly-strands-just-barely-covering-the-scalp stage.  Not a good look.  My friend and hairdresser came over and shaved me.  I felt good about taking control, good about no more hair clogging the shower drain or plastered all over my body.  I didn't feel so good about that first look in the mirror, though.  Total baldness is just so weird and alien.

That was not quite two weeks ago, and I find I'm getting used to it - a little.  Yesterday, I went running with just a baseball cap as a headcover.  (My daughter: "That looks so much better than those lame bandanas.")  I'm no longer startled by my reflection. 

(I was kind of hoping that the bald me would look like Kirstie Allie in her Star Trek days.  Instead, I bear an uncanny resemblance to Michel Foucault . . . don't ask me how I even know what Michel Foucault looked like, it's obviously some long-suppressed graduate school memory.  I tried - and failed - to insert an image here just now, so you'll just have to imagine some bald, bespectacled French guy.  Oh, and if you google "Michel Foucault images," you will find some really weird porn!)

Linda

Rock:  May your day with your friend, cupcakes, clippers, Airedale be everything you need it to be.  I am praying you will eventually find some peace with this situation that is currently out our your control.  Your trip today shows you are not letting it control you and that is reason for hope!  On another thread I came across how you took your screen name and believe you will find the courage to "Rockthebald"!

Blessings

My coffee is spewing all over my computer screen at the prospect of that google image search.  No, I'm lying. I still can't drink coffee because it tastes like hot water with dirt in it.  If I were drinking coffee, it would be, .... well, you know.

I love y'all.  Rockthebald, I understand the loss-of-control thing. I guess that aspect didn't bother me so much, because I figured I'd had a choice to not do chemo (which was true) and I probably could have insisted on a hair-retention regimen, like CMF.  Instead, I agreed with my onco's (oncos'--both of 'em) recommendation for chemo; and the only options they thought were appropriate (AC vs. TC) were guaranteed to make my hair fall out.  It felt like I was making a choice....sort of.

BTW, I read the book, "It's Not About the Hair," by Debra Jarvis; and I didn't like it.  What really pissed me off about the book was that she didn't even lose her hair--she was on CMF, and she said she maybe lost 25% of it.  For me, that wouldn't even have been noticeable.  So, call it hair-envy, or hair-loss competition, whatever--how can she tell readers whether it is or isn't about the hair, when she didn't even have to deal with that aspect of treatment???  Talk about someone who should have shaved her head in a gesture of solidarity!

I felt really weird about the prospect of shaving my head.  Almost everyone does it, saying they want to gain control of the situation and not just "let" their hair fall out (or "let" chemo take their hair, etc.).  It seemed like I was supposed to shave my head, and that ticked me off.  So, I didn't do it.

Plus, it was an experiment.  Even though my onco "guaranteed" I'd lose my hair ("all of it", my dh insists she said; but I missed that part), I was curious about how long it would take and how much I might actually retain.  The answer is:  not very long, and not very much.  Just some "thin, sickly strands just barely covering the scalp."  But there is some there, and it softens the frontal appearance of my head.  (The sides and back look pretty bad, but they'd be just as bad shiny-bald.)

Being able to discuss all these feelings in a forum where everyone understands is a life-saver for me.  Elsewhere on the BCO boards, people are talking about stupid things others said.  The one that seems to bother me most right now (timing is everything!), is "Oh, I've heard chemo is so much easier now than it used to be!"  Even my mom said that.  After I explain that, no, actually, the drugs they use today are much stronger than what they used 20 years ago; it's just that we are given even more drugs to combat the SE's--but those drugs cause another whole set of problems.... people generally shut up.

If you want to see what an early stage of "hand-foot syndrome" looks like (probably a Grade 2, maybe a 3), drop in at the Taxotere & Cytoxan thread later today. I took some pics of my feet, and I'm thinking of posting them.  They look worse than my head.

otter 

Otter:  you were not supposed to shave your head unless you wanted to take that step.  So hang on to those frontal strands and celebrate them.  It would be awesome if those hairs hung in there with you throughout the entire "experience".  They are yours keep them forever if you want !!!!!!

Interesting title for that book by Jarvis.  It's not about the hair.  Just what was it about?  I just got on Amazon to read comments about the book and didn't find words that would prompt me to purchase the book.  Did you see the one titled "It's not about the boobs.  Finding humor in healing."  and "Crazy Sexy Cancer Tips"  Maybe someday I'll find some interest in reading things like that but for me now it's my own story that is daily being written. 

Add me to this week's list, treatment #2 A/C on Tuesday with immediate Neulasta shot, final expander fill on Wednesday. Thank God, I feel like I'm going to expolde! I'm a little lopsided but hey, I can totally deal with it. Felt great the last week...hopefully what I learned from my first round of side effects can be headed off at the pass. Still have my hair but can feel everyone's pain and frustration. I had a melt down just shopping for a wig. Happy Memorial Day to all!



Roxi

I'm back I did it, hair is gone !!

i think i look ok, better than i thought it would anyways. It was harder on my friend than it was on me, she did it real slow, took off a little bit asked me if i wanted to go shorter, until we got as close as she could go with the electric razor. I was a little leary of maybe getting a cut or something if she went any closer with a hand blade.

I know this was the right choice for me but its not for everyone, we all have to deal with it in our own way.  I kinda have a feeling of peace right now so i hope it lasts! 

Hope everyone can enjoy this Sunday with family and friends !

Otter and Rocket both nailed it. Hair is first thing we notice when we meet others (before smile, eyes). Its great we can cover the loss with hats and scarves. And cheers to those that can handle "commando." But simply needing the hat is the most outward display of the inward admission that we are indeed sick and recovering.  

My loss took 2-3days and came out in handfulls and pillowfulls. May leave few stragglers of bangs, but expect to cut the rest off by Tues.

I like the style of my wig and others like it too. But I still "feel" like its fake. Its either too lose (blow away or slide off) or too tight (migraine within 4-5hrs). I'm sure alot has to do with my inner self not admitting defeat.   

I have a kerchief scarf. Its not pre-tied, but I just tie the tails in knot and go. Its very comfortable and no elastic to cause headaches. Haven't tried it is wind, but it seems that it would stay put. I will probably order a few other colors and maybe a turban style too. I also have a newsboy cap with a drawstring fit and a safari brim hat with chinstrap (for rides in Dh's hotrod later this summer!) These feel more like a fashion statement, than an admission of illness.

I'm glad I've found a resolution to my hair battle. Good luck to others still fighting theirs. May you find a similar comfort zone. I never wore scarves before dx and was surprised to find I liked them better than the wig. May even keep a few for later on! 

Do they make scarves with built in SPF? Is there an SPF lotion safe for scalp during chemo? I was very sun sensitive before and have plenty of lotion for skin. What is best protection for scalp besides hats? Besides Sungrubbies, are there other companies that provide sun scarves?

Add me to the Tuesday swimteam. After the hair trauma this weekend, I hope tx goes smoothly. Meds and goodies are ready! And 2nd (last) fill is Thursday.   

Good luck and smooth swimming to all my teammates. Is it Hawaii this week?? Or a peaceful lakeside retreat?? See you there.

Janice

I took the train to Bald today.  And it wasn't that bad.

I hopped a train north to see my dear friend and colleague (the first friend I made when I moved to NYC).  About an hour after I arrived, I found myself on her back porch with a glass of lemonade as she shaved my head while we discussed bad hair moves of our youth (whatever possessed me to answer in the affirmative in 1985 when asked, "Do you want me to cut your hair around the ears?").  Afterwards, we walked to a deli, bought sandwiches and ate them outside. We went back to her house to pick up her dog.  (I studied myself in the mirror a little and concluded I have pointy ears and my dad's hairline.) After a detour to buy SPF 70 sunscreen (which we are convinced works by deflecting the sun onto the person you're with)** we took a long hike around a lake. Later, I took the train back and called a friend when I reached Harlem. We sat in her little garden and drank mint tea.  Then around 9 pm I walked home through Morningside Park.  People were still enjoying the last hour or so of barbecues, with kids on bicycles and skipping rope on the sidewalk.

I just got home (9:30pm).  It turned out to be a wonderful day. 

Thank you everybody. 

**Do you know that some sunscreen contains soy? Because what the world needs now, apparently, is more soy. 

Christine, could you add me to the Hawai'i pool on Fridays? And be sure the cute lifeguard is on duty??? (even though I skip every 3rd Friday that's too complicated). 

I'm so glad you chose the Carboplatin regimin.  I'm triple negative too and had dd TAC first, now have mets and I'm getting Cisplatin/Gemzar, so I'm glad you're getting a platinum!

The steroids, I guess, are still giving me grief about sleep and the end of peristalsys as we know it....not good times.  But at least no one's telling me a story aobut someone they know who died of bc!!! 

Rock, glad you had a LOVELY day on the Follicuarless Express! 

otter, I like your hair idea.  since mine seems to be going more slowly this time I might try that...

Janice, I,too, preferred the simple kerchief tied around the head, espcially since I seem to have a small crrrrrrrrrainium (So I Married an Axe Murderer) and bigger caps and hats cover my face & ears.  They are very soft, too.

Well all, have a wonderful Monday Memorial Day.  I hope you have a holiday and no inlaws visiting unless you love 'em!

dana