There goes the hair . . .

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AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

There goes the hair . . .

Postby AnnClare » Fri May 26, 2017 8:13 am

As I've now had 13 full-brain radiation treatments, the hair has begun to fall. I knew it was coming, and I'm not completely bald yet (I think I will be by tomorrow, either because it will finish falling out, or because I'll have my husband take his trimmers to my head - there's no point in pretending!) It's so odd - the length of the hair itself, which I've kept up in a clip all week, feels like a cross between steel wool and cotton. I guess the radiation has caused the change in texture. Gross.

Still waiting for my wigs to arrive (funny how the internet orders you want to arrive fastest take the longest!), I'm wearing a slouchy beanie-type hat today. It's actually kind of cute, certainly cuter than the scraps of hair that exist beneath it. I'm wearing some big-ass silver earrings, too, in an effort to add a little panache. When looking in the mirror a little while ago, I thought, "Hmmm. I look okay, if I do say so myself." As a woman who has criticized just about every inch of her reflection for 40 years, this is no small feat, especially under these circumstances!

One of the lessons I'm learning throughout this experience is acceptance. Acceptance of my body. Acceptance of a 'new normal.' Acceptance of the fact that this thing may very well hover over me the rest of my life. Acceptance of numerous doctor visits and treatments . . . there's something to be said for allowing yourself to go with the flow instead of bristling and resisting every little bump in the road. I also believe a healthy dose of acceptance goes a long way towards healing. When I don't feel perpetually on the defensive, my body is more relaxed and can repair itself more efficiently.

Happy Friday, my fellow ass-kickers! :)
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: There goes the hair . . .

Postby MissMolly » Fri May 26, 2017 9:27 am

AnnClare:
I have come to look specifically for your posts when I log on. The first thing that I do is scan for a post authored by you. "Where is Carmen?" . . . Has been replaced by "Where is AnnClare? What does Ann have to say today?"

The point is: You have become a voice of valuable wisdoms and self-truths. What you have to say resonates with me.

FYI: Carmen is a fictional female traveler who travels the world, confident in her self and capabilities, beloved and followed by children who follow Carmen a series of books authored for children. I see you like Carmen: Independent, spirited, an explorer of your world.

I applaud your teachings on today's topic of acceptance. Relevant and valuable insights, as only someone "in the trenches" can articulate.

You shine, Ann. You truly shine.

Nameste,
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: There goes the hair . . .

Postby peanut_8 » Fri May 26, 2017 10:19 am

I've conjured up a visual image of you in your hat and earrings AnnClare. I must say that you are looking ridiculously cute today. IMO the addition of the big-ass silver earrings was genius.
:mrgreen: :mrgreen: :mrgreen: :mrgreen: :mrgreen:
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Re: There goes the hair . . .

Postby AnnClare » Fri May 26, 2017 10:36 am

Karen,

Your glowing compliment has made my month - your words have touched me in a way that I cannot effectively articulate. :) I have tears in my eyes and down my cheeks. To think that something that little, ol' me has to say can resonate with someone else . . . I have no words beyond, "thank you, my dear."

We, all of us here, are pillars for one another. None of us wants to be here, yet we are, for various reasons, and together we build and hold one another up. And that is a beautiful thing, as are you, my sweet Karen. The folks here have restored my faith in humanity. There's a line from a song in "Beaches" that often runs through my mind when I come here: "Human kindness is over flowing . . ."

Onward & upward, for ALL of us. We are all rock stars!!! (Even on those days when we don't exactly feel like we are - we still are rock stars on those less-than-perfect days).

The other day I was trying to pull myself out of a mini-funk by thinking, "Hey - most folks sleepwalk through life, not appreciating any of it. I used to be one of them. But now I'm fully awake. I'd have preferred a less dramatic wake-up call, but maybe I'm SO stubborn and pig-headed, this was the only way for the Universe to get my attention. Okay, point taken. I'm awake. I'm alive. I'm present. What's next? Here I am. Let's play ball." Perhaps in a twisted sense, this is a fortune experience. It's easy to say that tomorrow isn't a given for ANYONE, perfect health or no, but being in this boat, we really GET it. Each day really IS a gift. The petty worries & BS truly fall away. Oh, the time I wasted in my life worrying over nonsense! No more - that's liberating.
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: There goes the hair . . .

Postby JudeD59 » Fri May 26, 2017 11:04 am

It's all about the eyes. With your beanie and big silver earrings and your eyes sparkling with intelligence, humor and the piss and vinegar fight we've come to expect from you, I'll bet you are stunning.

I agree with you about acceptance. Spending too much time wishing things were different is exhausting and can make you bitter. When crap happens to me that is scary or embarrassing, I try to turn it into a funny story for family and friends. It's how I cope. I think it helps my family cope a little better, too. "If mom is making jokes about it, it can't have been too awful."

You need any help kicking ass, you let me know. I might have to take a few quick bathroom breaks in the midst of the ass-kicking, but I've got your back.

Keep sparkling, Ann.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: There goes the hair . . .

Postby juliej » Fri May 26, 2017 5:01 pm

AnnClare wrote:The other day I was trying to pull myself out of a mini-funk by thinking, "Hey - most folks sleepwalk through life, not appreciating any of it. I used to be one of them. But now I'm fully awake. I'd have preferred a less dramatic wake-up call, but maybe I'm SO stubborn and pig-headed, this was the only way for the Universe to get my attention. Okay, point taken. I'm awake. I'm alive. I'm present. What's next? Here I am. Let's play ball." Perhaps in a twisted sense, this is a fortune experience. It's easy to say that tomorrow isn't a given for ANYONE, perfect health or no, but being in this boat, we really GET it. Each day really IS a gift. The petty worries & BS truly fall away. Oh, the time I wasted in my life worrying over nonsense! No more - that's liberating.

I find it difficult to listen to people complain about trivial things, normal things, things I was complaining about in my pre-cancer life. Now those complaints just annoy me. I want to tell them about real problems - about how this terrible f*cking disease invades not just our bodies but our family, our friendships, our future, our dreams, our hearts and thoughts.

AnnClare, I’ve read enough of your posts to know that you are an incredible woman of strength, grace, insight and realness. Keep kicking cancer butt!!!

xo,
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: There goes the hair . . .

Postby Lee » Fri May 26, 2017 5:20 pm

MissMolly wrote:AnnClare:

I applaud your teachings on today's topic of acceptance. Relevant and valuable insights, as only someone "in the trenches" can articulate.

You shine, Ann. You truly shine.

Nameste,
- Karen -


AnnClare,

Could not agree more. You are a true inspiration around here.

Keep up your ass kicking attitude.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Re: There goes the hair . . .

Postby AnnClare » Sat May 27, 2017 11:06 am

You guys are the best . . . I am so touched and humbled by your kind words. :)

My boss gave me the day off, since not much was going on at the spa today anyway. It was nice to have a leisurely Saturday morning at home. Went for a walk, then while the Mr. was crushing it at the gym, I did a load of laundry & vacuumed, then showered my body & head. Still haven't worked up the courage to shampoo my pate yet, as my scalp is still quite tender, thank you very much radiation. But running water over it felt good. According to Fed Ex one of my wigs will allegedly arrive today, although it's rather hot here this weekend, so I think I'll just kick around the house with my head au naturel - the Mr. doesn't care . . . I'm the one who almost gasps when she looks in the mirror, although as more and more hair falls away, it's less and less shocking. It is what it is, and I'm happy to be alive and feeling pretty good, considering. Am I 100%? No, but whatever percentage I'm operating at is do-able, and I can deal. Particularly since it's the weekend and I can rest & laze to my heart's content. One final zap Monday a.m. - I can do this. I won't allow myself to think too much about what's next . . . baby steps. One lovely day at a time.

I've made a pitcher of sweet tea - seems like an appropriate beverage to have on hand for Memorial Day weekend, which traditionally kicks off summer. We have a lovely mint plant on our front porch, and a sprig will absolutely be making its way into my glass. :) I'll bake & set up a Jell-O cake this evening for us to enjoy tomorrow.

Happy Weekend, my lovely warriors!!!
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: There goes the hair . . .

Postby peanut_8 » Sat May 27, 2017 11:28 am

Sounds like you have a fabulous weekend planned. My MIL used to make a jello cake that was quite tasty. Unfortunately she passed away this past year, and the recipe has been lost. Would you mind sharing your's?

I'm excited to hear how you and the new wig will be getting along. Can't wait for an update.

Best Wishes,
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Re: There goes the hair . . .

Postby AnnClare » Sat May 27, 2017 11:49 am

Peanut - it's easy as can be. (People used to say "easy as pie" - as someone who's baked many a pie in her day, I never understood that expression, as pie, the crust in particular, used to give me the business!)

I buy a white cake mix (any brand will do, though I'm partial to Duncan Hines for some reason).
Bake the cake according to the package directions for a 13" x 9" pan (a sheet cake). Allow cake to cool, in pan, on a wire rack. Once cool, used a bamboo skewer or straw to poke holes alllllll over the cake. Prepare Jello (3 oz. package, not the BIG one) as directed on package, and pour over cake. Place cake, still in its pan, in refrigerator overnight. Voila! I also have Reddi Whip on hand, to serve on the side (I just discovered this stuff - I used to make my own whipped cream), along with some fresh strawberries. The cake doesn't require any 'dressing up,' but why not make it more fun, right?
The flavor of Jello is entirely up to you. I usually use strawberry, but any flavor you like will work. I'm betting the orange would make it a bit like a Dreamsicle - I may have to try that. Hmmm.

Let me know if you have any questions. :)
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: There goes the hair . . .

Postby peanut_8 » Sat May 27, 2017 11:53 am

Thanks AnnClare. That sounds so good, especially with fresh strawberries and whipped cream. :D :D
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED


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