Overcoming adversity

I had a glorious week this week.  I felt better than I remember feeling on any good weeks the last time I went through chemotherapy.  There are too many variables that prevent me from figuring out precisely why this is, but I have ideas.  First of all, my kids are independent and understanding.  They are ages 4.75 and 6.5, and while this might seem young to most of you, I would like to point out that they were 1.25 and 3.0 the first time I started chemotherapy back in 2010.  They were mere babies who needed their mommy and couldn't comprehend my sickness.  I am sure that I attended to them before I attended to myself whenever I could.  In contrast, this time I am doing an excellent job of taking bona-fide naps, not just resting.  The kiddos are happy to play with all of the wonderful people who come over to play with them and are less dependent on me specifically.  It seems likely that this is contributing to my higher energy level after I get through the chemo fog.

A second variable of potential interest is that I now practice yoga and meditation.  I started taking a yoga class once per week in the fall of 2011 (after completing treatment for my first cancer, IBC), and I absolutely love it.  I now apply these skills almost daily to help me stretch my sore bones, ease my nausea, and heal my healthy cells.  It is empowering to close my eyes and imagine the hbomb diving within to achieve these things.

It is on this high note that I went in for my second dose of TCH+P yesterday.  Dad and Ian provided good company, and even treated me to a matinee (Ian Redboxed the Oscar-nominated movie Gravity for us to watch on the laptop--it was intense and visually stunning).  The 6 hours of treatment passed quickly until...I had an adverse reaction.

The last drug administered was the C, called carboplatin.  It is known that C can cause adverse reactions in people after several doses.  Some folks can develop an allergic reaction.  Each of the two times the nurse has started dripping the C into me, she has told me to tell her immediately if I start to feel strange.

Last week I couldn't tell if the C was making me feel any more strange than all of the other junk that was pumped into me during the previous 5 hours.  I assessed myself as "fine" and we proceeded with the C. I still think that everything was fine with last week's dose.

Yesterday, however, it became clear that the C was doing something strange.  At first I thought I was making things up, because I am fully aware of the research that shows that the power of suggesting side effects can actually cause people to feel side effects (this is called the nocebo effect ("I shall harm") and is the opposite of the placebo effect ("I shall please").  But check this out--I started sneezing and coughing, my nose started to run, my lungs got tight, my throat I started to burn, my ears started to burn, I coughed up mucus, and my skin turned red.  Ian agreed that we were past the realm of the power of suggestion.  We called the nurse.

She immediately paused the C drip.  We had 90% of the dose in my body, so I felt good that the cancer-fighting was not impeded.  A substitute Dr. Oncologist came in to check on me, too, and they came up with a plan.  The nurse started a benadryl drip to tell my body to stop this allergic reaction.  Another nurse came and set up an albuterol nebulizer treatment to get my lungs to open back up.  These counter-measures worked almost instantly.  It was rather remarkable.  I quit coughing, sneezing, and mucus-ing almost as quickly as I'd started.  I will say that benadryl administered intravenously is pretty hard-core.  The drowsiness was instantaneous.  I lost control of my eyelids.

Both the nurse and substitute Dr. Oncologist emphasized that we need to clearly enunciate to my usual Dr. Oncologist just how serious this episode was.  He asked me how many doses of C I'd received?  I said that this was my 8th dose (second dose of this battle, with six doses during my previous battle).  Substitute Dr. O said that the 8th dose is when these adverse reactions typically start.  He emphasized that this reaction was a warning to us, and that subsequent doses of C will illicit even stronger adverse reactions in me.  He told me not to worry, there are other cancer-fighting drugs that we can substitute for C, and we'll just have to talk with my usual Dr. Oncologist about the options.

I was thinking, I'm already taking three other cancer-fighting drugs.  I don't suppose we could just drop the C altogether?  Hint hint?  Wishful thinking, in a way, but I am also aware that I don't want to wimp out at this important time in my life.  Must fight the cancer, must fight the cancer.

After I had stabilized they started the C drip once again.  I guess we had to finish the dose after all.  The nurse stayed in the room the whole time and wouldn't let me get up to potty.  She had to make sure that my initial reaction was the worst of it.

And it was.  My body did not complain about receiving the last dregs of the C dose.  I bet my cancer complained, though.  He he he.

Today the family walked with me to the clinic to get my neulasta shot.  It's a glorious day out there.  As you might recall from last time, neulasta is a very expensive medicine that I receive one day after chemotherapy to help my white blood cells (specifically the neutrophils) rebound.  It's the best.

Finally, I'll leave you with an image to show you how I plan to get through the week.  I have acquired more weapons than I had during my previous hard week, and I have already begun to deploy them.

From left to right, back row:  A book of healing mandalas, mini saltine crackers, gatorade (exclusively lemon lime or orange, for the record), apple juice, and a new hat supply.  Front row:  homemade stained glass kaleidoscope, Kefir yogurt drink, Accuflora probiotic pills, Imodium, real ginger ale, and a new scarf supply.    

I anticipate a week of healing, beauty, and gut control.  Or if the gut control remains elusive, at least I can turn to the beauty for distraction.

I'm a flattie, and proud of it

I have previously written about my choice not to reconstruct after my mastectomy.  I continue to be interested in this choice, and my interest is rooted in the fact that there must be hoards of other women out there who choose not to reconstruct.  They seem to be hard to find and I rarely encounter them in person, but now some have been found electronically thanks to some recent online publications!  

My friend S. and I have continued to research the variables that lead to and outcomes of the choice to be flat-chested after a mastectomy.  Recently she interviewed me for articles on the websites Flyover Feminism    and Mothering.com to align with IBC awareness week.  Great job, S., and thank you for your efforts to raise the awareness of this important issue!  

One of the articles received a comment from Melly with a link to another article.  It's a great article.  But even greater are the comments.  Check out all of the positive feedback from other women who have chosen not to reconstruct.  Of particular interest are the occasional insights into spousal support.  Considering that women often feel pressured to reconstruct in order to remain attractive to their spouse, I think that some of the feedback here is particularly informative.  

Happy reading!

Defining beauty

My friend S. is always sending me the most interesting material to think about.  Most recently she sent me an article about a mother who shaved her head to prove to her daughter that she didn't need her hair to be beautiful.  Her daughter is 4ish and into princesses like most other preschoolers, and seemed to hold the mother's hair in high esteem.  So the mother let the daughter cut it off, and then she shaved the hair down to the scalp.

A noble undertaking indeed!  What bravery and self-confidence did that mother require to execute such a daring sacrifice?

The event seemed to have the desired outcome, with the daughter proclaiming her love and admiration for the mother and the mother accepting her new bald beauty.  Her point was that it's what's on the inside that counts.

When I finished reading, I couldn't help but think what would have happened if the mother's noteworthy feature were her eyes rather than her hair?  Certainly she wouldn't have gouged them.  This train of thought vaguely reminded me of something religious...perhaps summed up as Catholic guilt and visualized with someone punishing themselves for being too virtuous?  These thoughts returned simply to, "What's wrong with having beautiful hair?"

Everyone has something beautiful about themselves.  Rather than reducing a feature that might be coveted, isn't it equally important to teach our children how to accept compliments with grace?  How to harbor our own personal strength and beauty with a bit of humility?  


S. and I have been talking a lot about beauty lately--how it is defined, what it means, and to whom.  She brought up a good point in that the mother who shaved her head is classically beautiful:  trim figure, symmetric face, pretty smile.  S. wonders if this woman would she have felt as comfortable going bald if she were overweight, had stickey-outey ears, or otherwise wasn't as outwardly beautiful.  


This in turn made me think of myself and my unibreast.  Would I be as comfortable walking around lopsided (as I do) if I weighed 50 more pounds, had a limp, or were 4'11"?  Is my perception of my level of beauty in line with that of society's, or are people that I meet thinking to themselves, "someone get that poor girl a boob"?  And when it comes to my daughters, do I do a good enough job acting beautiful despite my single breastedness so that they understand that it's what's on the inside that counts?  Or better still, are they learning that I am actually beautiful despite my external deformity?     


I believe that self-confidence goes a long way toward the beauty that one projects.  Beauty begins with the self, whether you're bald or otherwise.  Props to the mother who was brave enough to shave her head and more clearly reveal her inner beauty.  But it's okay to be outwardly beautiful, too, in your own unique way.        

The next level of post-mastectomy beauty

Several people have now sent this picture to me, and I would be remiss not to include it on the blog.  I was slow to post it because I wanted to find the original source, to properly give credit where credit is due, but apparently the photo has gone "viral" and I have been unable to find much information about it.   But the message is clear, even in the absence of the facts.

The words are in Portuguese and mean, "I had breast cancer and now I have Theo".  Isn't it breathtaking?  Her smile is so radiant, her pose so strong and confident.  

I hope this woman is still every bit as happy as she was in this moment.

Hair!

There's a lot of gorgeous hair in this house.  And my creative outlet has been to play with it. 

This St. Patty's day weekend we drove 40 miles for a family sleepover with our old neighbors.  It was a marvelous occasion that included a treasure hunt, grilled delights, and sangria.  In honor of the tradition of greeness on St. Patty's day, we baked green bread, grilled green asparagus, and braided green yarn into our hair.  Well, the longest of our hair.  After I braided the green yarn into Azalea's hair, in three french braids, I realized that I could easily loop the braids up by tying the end of the yarn back up to the starting point of the yarn.  Pippi Longstocking was outdone, in so many ways.   

   

I love all things asymmetric, and I find asymmetry to be particularly cute on the wee ones.  Eleanor's St. Patty's hairdo was no exception.  Her hair is still a bit too short to manipulate into sturdy french braids, so I tried out some hair knots, twisting one near the top of her head and another behind her ear.  Ballerinas, eat your heart out.  

I too have been subjected to my own creativity.  I am thrilled to have so much hair, but I struggle to know what to do with it.  It is so heavy around my face.  It is so short and poofy.  I long for a ponytail.   But I can't have that yet and so I am spending more time playing with my hair than I have at any other time in my life, eighth grade included.  I started out by pinning back the bangs with little barrettes.  This has been going well for about a week, but I still haven't worn it like this to work.  Then tonight Azalea pointed out that I could in fact pull my hair into a few ponytails in the back of my head if I wanted to.  And so it was executed:  my first post-cancer ponytails.

I have been wearing all of this hair hardware--barrettes, bobby pins, hairties, and even a flower for a spell--all night and I must say it feels FANTASTIC to have my hair UP.  But what do you think about the look?  Could I show up to work with my hair like this?  And then what do I do with the hair around the ears? I look forward to your opinions, especially my sister Holly's since she'll be over on Thursday and can help me troubleshoot my short-hair shortcomings.

The weekend after

To recap, Friday was a stressful, cancer-scare roller coaster that ended with good news:  the breast MRI showed nothing abnormal in my lungs or chest wall.  The excessive amount of radiation I recieved is to blame for the continued increased metabolic activity in those regions.  Hopefully that activity will fully subside before the next PET scan. 

What does a girl do after a day like Friday?  Rocks the heck out of her weekend.

After I got the results on Friday at 5, it was hard to say whether I felt like curling up on the couch under an afghan or putting on my tall boots and going out.  I opted for tall boots.  Thanks, Ian, for giving me a night off from the kids.

I drove to a bigger city and met my sisters, aunts, and step-mom for a night on the town.  It was fantastic.  Even the drive was therapeutic, both because it was valuable time to decompress and because I got to listen to whatever I wanted to at whatever volume I wanted.  Turns out that I like to feel the bass in my chest, and I hadn't listened to Outkast's Speakerboxx in a really, really long time--the kids aren't big fans.

 
(the only relevant lyrics here are "can you feel that B-A-S-S bass".  Don't try to decipher the rest.)

We went out for dinner and we went dancing.

I slept in on Saturday.

I took the girls to spend the night with their cousin at Aunt Jacque's house on Saturday night.

My dad called to invite Aunt Jacque to a basketball game, but since I was there she decided to pass.  Is it wrong that I scarfed up the ticket and ditched Aunt Jacque?  Yes, it is, but that is what I did.  It's not every day I get a date with my dad.  And oh my goodness did I pick a good game to attend.  We won in triple overtime, against the best team in the conference!

I didn't get to sleep in on Sunday because my ladies never sleep past 7:30, but there's more to life than sleeping in.  We packed a picnic and had lunch at the botanical gardens.  The sun was shining, flowers were blooming, and fishies were ducking the coins that my girls pelted at them.

To cap it all off, my mother-in-law made us homemade pizza tonight.  It was a splendid weekend.  The only part of me that remembers Friday is my shoulders (still a bit tense).  Hopefully yoga tomorrow night will relieve some of that.

You know what's funny?  When I got the crappy PET scan results on Friday morning, my first two thoughts had nothing to do with death or pain.  They were about fatigue and vanity.  I said some version of, "BUT I NEED A VACATION!  I'd better go on a vacation right now so that I don't have to spend my vacation time on being sick again."  Then I said something like, "BUT I HATE MY HAIR AND I DON'T WANT TO HAVE TO GO THROUGH THIS AWFUL GROW-OUT AGAIN!"  Isn't that something?  I surprised myself with my shallow and irrational reactions compared to the very serious possibilities of cancer treatments and aftermaths.  I later apologized to my oncologist to demonstrate that I recognized my misplaced values.  She was very understanding and said that I had a right to be frustrated and irrational.

I continue to be intrigued by my reaction because I feel like I do a good job of simply wanting to live (this weekend is Exhibit A), and yet when confronted with another threat to my longevity the first thing I did was whine about my hair.  It really is a terrible hairdo for me, but it doesn't hold a candle to any of the other cancer side-effects.

Lunch is packed, blog is posted, and now it's time to squeeze in a few minutes of relaxation before visiting the sleep fairy.  I hope you all have a great week!  

Image

"As I child I had expected my liberation to come from getting a new face to put on, but now I saw it came from shedding something, shedding my image."--Lucy Grealy in Autobiography of a face


I read the most remarkable book, cited above.  Ms. Grealy was diagnosed with Ewing sarcoma in her jaw when she was nine years old.  Her jaw was removed from one side of her face.  She underwent 2.5 years of weekly, debilitating chemotherapy and a year or so of concurrent radiation.  She survived.

The obvious and fascinating point of the book is to present what it is like to go through virtually your entire life, the teenage years in particular, with such a dramatically unique face.  She underwent nearly 30 attempted reconstructive surgeries over 18 years.  She developed numerous psychological tricks to cope with these physical and emotional hardships.  In particular, she coached herself that she was ugly.

She decided that she had to tell herself that she was ugly in order to cope with the teases dished out by boys and men (at some point she states that girls and women never taunted her).  The following is my interpretation, but it seems that rather than undergo an internal counter-argument, it was more effective for her to agree with them.  I think I can understand this logic.  If you tell yourself that you know you are ugly, a tease is no longer a tease but rather a pointless declaration of the truth.  I can see it as a survival mechanism at the expense of one's self-esteem.

The hardest part to read about is her disappointment with the reconstructive surgeries.  They all failed because her tissue was so severely irradiated that the transplanted tissue would not "take".  It would simply be re-absorbed over the course of several months, and she would be left with her lack of a jaw line in spite of the lengthy, painful attempt to restore it.  With each reconstruction, her hopes to no longer be "ugly" would rise, and with each failure she would recede farther from society.

In the end she had accepted an end to the surgeries.  The last attempt seemed to have a slightly better cosmetic outcome than all of the previous attempts.  But she couldn't reconcile that the face she saw in the mirror was actually her face.  This is because she had gone her whole life looking the way one looks without half of a jaw, and now that it was at least partially corrected she didn't look like herself.  But apparently she looked more acceptable to society?  So as she tried to reconcile this paradox, she avoided looking at her reflection for over a year.  Avoiding her face helped her accept that she had a face; she was no longer waiting for her face to be constructed.

It's a beautiful book with a universal message:  you are beautiful.  

"Why couldn't they just stop complaining so much, just let go and see how good they actually had it?  Everyone seemed to be waiting for something to happen that would allow them to move forward, waiting for some shadowy future moment to begin their lives in earnest." --Lucy Grealy, Autobiography of a Face

A prosthesis at last, just in case

I am now the proud owner of a prosthetic left breast.  The breast doesn't actually have handedness, but since I only have a spot for it on my left side I define it as a left breast.  It is triangular in the two dimensions that are flush with my skin, and teardrop-shaped in the third, protruding dimension.  It is pleasantly squishy--a bit more firm than a gel-filled ice pack but more pliable than rubber.

These descriptions will have to suffice for now because I decided not to photograph it yet.  I didn't know how:  do I lay it on the table?  Do I hold it up to my chest?  Do I let my smiling children hold it up for the camera?  I don't yet feel emotional ownership for this left breast and so any of these options seem satisfactory on one level, but on another level I don't want to accidentally disrespect the left breast in a careless photographic portrayal.  And so once again I rely on my words.

Acquisition of my prosthesis was surprisingly tedious.  It took five different fittings to get the correct breast-bra combo.  We first had to special order some prostheses.  The cancer outreach center did not stock any prostheses in my size, although I can proudly say I do not require the smallest prosthesis available (just the second smallest).  Then the shape was an issue, so we had to order the decided size in a different style.  Then the bras were the issue.  With a prosthesis, one typically wears a special bra that has a pocket for the prosthesis.  One can probably wear a prosthesis in a normal bra, but the pocket is nice to keep the prosthesis in place and to protect the skin from rubbing on the somewhat sticky prosthesis.  So I tried many, many different pocket bras.  It was difficult finding a bra that was complementary to (if not equalizing of) the prosthesis and Ms. Right Breast.  At long last we found one bra-breast combo that actually worked well.  Unfortunately, this bra was a rather impractical blue.  It is and will always be my first prosthesis bra, but we also settled on an imperfect fit in order to include a practical champagne-colored bra in my prosthesis-wearing repertoire.  

At first I was excited to have a prosthesis option available!  I slipped the breast in the pocket and put on the bra.  I was a bit self-conscious about choosing to wear a breast to work that day, so I chose a shirt that I presumed would hide the prosthetic breast just as I rely on it to hide the empty space.  And indeed I may have hidden it well.  I received no comments, but why would I?  What would someone say, regardless of if it were positive or negative?  "Did you get a new breast?  It looks great!" or "Did you get a new breast?  Hmm, you should get your money back."  It was false to imagine I would get affirmation for my choice to wear a prosthetic breast one day.  But I kept hoping for it as if I were sporting a new pair of glasses or shoes.  Also disappointing was how much I hated wearing a bra again.  It was the first time I'd worn a bra in months, if not a year.  I had forgotten how many millions of places it pulls and rubs and hikes and heats.  

Needless to say my shiny new prosthetic left breast is tucked away in its special box, in its original bag.  The scratchy new bras are stuffed into my overflowing (um...why?) undergarment drawer.  But they are at my disposal should I ever desire to increase my physical discomfort at the expense of my emotional comfort.  Maybe at a wedding reception with an open bar I can reconcile this dichotomy.                     

Music to my mind and muscles

Months ago my friend Ainslie recommended yoga as a therapy to help both my mind and body recover.  I've never done yoga, and indeed I thought I would hate yoga because I am lanky and inflexible with relatively bad knees.  But I'm a new person now, highly divergent from who I was before cancer.  And as the weather turns, I'd like a mechanism to get out of the house and exercise.  Maybe I'd like to give yoga a try, once a week for five weeks?    

I found a yoga studio just downtown, within walking distance from our house.  It is a private business with only one instructor.  It thought that this would be a promising way to get into yoga, because if I'm going to hate yoga I don't want it to be because of a poor-quality experience.  I'd rather give myself a fair chance to like yoga by taking it from someone who Lives yoga.  And let me tell you, the instructor seems to Live yoga.  She is fantastic!

I've only attended one session thus far, but preliminarily I love yoga.  In just one session something under my scar popped and I have slightly increased range of motion.  It was wonderful to have some direction from the instructor in terms of pushing my body; I think I am a bit of physical coward when I am stretching by myself at home.  The direction revealed that I am not very strong in the right places, so it will be awhile before I get the hang of the breathing and the posing.  I definitely did a lot of quaking the first time.  I am greatly looking forward to getting strong in the right places!  And maybe I will gain back the inch of height that I lost as a result of two pregnancies.  Ainslie said that she gained an inch in height after only a few weeks of yoga.  I don't really need to gain an inch like Ainslie did (she is adorably petite), but if a girl's gonna be tall she may as well be 5'11" rather than 5'10".  At 5'11" I'll make better use of these enormous feet (aka stabilizers).

In addition to the physical aspect, yoga is a mental exercise in releasing stress and anxiety.  I tend not to carry much of either around with me, but I found that I enjoyed the mental yoga almost as much as the physical yoga.  It was relaxing.  More importantly, it was wonderful to have permission to think about nothing for a whole hour.  Rarely do I give myself permission to think about nothing:  if it's not the kids it's the science, if it's not the science it's the chores, if it's not the chores it's the blog, and so on.  Turns out that I enjoy thinking about nothing.

My yoga instructor also sprinkles the nothingness with pleasant nuggets of thoughts.  I scurried to write this particular thought down as soon as yoga was over:

"...letting go of the illusion or dream that you're perfect, and settling into your natural state, which is imperfection..."

I am certain that this comment came from the universe, ensuring me that I was in the right place.  I have been thinking a lot about the natural state of imperfection lately, primarily in the context of physical beauty.  When I had two breasts I did not think that suffered the illusion that I was perfect, but the fair bit of mental energy I have spent settling into my new natural state of having one breast indicates otherwise.  Perhaps I have a leg up on my fellow yoga-ers because I am actively engaged with settling into my imperfection.  And perhaps yoga will help me to settle more comfortably.          

Revealing

Martha totally called me out in the comments to the previous post.  She said that she would like to see a picture of the new haircut with, well, more of the haircut in the picture.  This is not an unreasonable request.  I did not post awesome pictures of the haircut because the ones we took at the salon make me feel ridiculous.  Also, now you'll know what my hair is Supposed to look like, although I have yet to achieve this level of stylishness with my own two hands.  But at this point, what do I have to lose?

One thing of which I was previously ignorant is the issue of styling your hair around the glasses stem.  I used to just put on my glasses.  Oh no no no no, not anymore.  My stylist taught me how to use the comb to release the hair from the clutch of the stem, laying much of it gracefully over the top while leaving just enough underneath.  Ah, short hair, will I ever pass all of your lessons? 

While we are here, I will divulge that before my Herceptin therapy yesterday I got fitted for a prosthesis.  I figured even if I never wear it, I may as well get fitted for it before I lose the prescription.  The fitting was not unlike trying on shoes except that instead of taking off a shoe, I took off my shirt.  Then the nurse who works in the Cancer Center Boutique helped me chose the correct prosthesis and try on countless bras.  Choosing the prosthesis was the easy part because we just matched it to the existing breast.  But I had to try on countless bras to find the right one for the right breast, the left prosthesis, and my 30-year-old self.  See, the prosthesis requires a special bra that has a pocket in it.  I guess you can't just set the prosthesis in a normal bra or it might just leap out of there.  Because of this need for prosthesis security, these bras all seemed gigantic to me, and a far cry from my old bras.  But whatever.  It's not like I had cleavage or anything interesting before.  Besides, I'm rather enjoying the no-bra lifestyle.      

The prosthesis itself is made of silicone and is kind of cool; I will post pictures when it comes in.  The nurse had to special order it because she didn't have any small enough for me.  I always joked that my cup size was a lower-case A...turns out I wasn't far off the mark.  I am indeed less than an A, but they call that size a double-A, not a lower-case A.  So my double-A silicone breast is on order.  I wonder if you can get those through Amazon?

Poke tally

port  38  (I only have two herceptin treatments left!!!!)

right arm 12

tummy  6

left arm  6

right breast 2++

left breast  1+

superior vena cava 1

T9 vertebral body  1

Order

I got my first haircut last week.  It was my first haircut since I was bald last spring.  Now I have a trendy hair-do instead of a dandelion puff.  

(rockin' the new haircut at the apple orchard)

I waited and waited for this haircut, despite the developing mullet, because I was so afraid that the stylist would cut off too much.  Indeed, she shaved my neck down to bald, and probably cut half of the length in many strategic places.  Now it resembles my June hair-do, with some parts a bit longer.  And next time some more parts will be longer.  And the next time, longer.  Until...

(rockin' some long hair at the same orchard last year)

It was strange to part with this hair that I have cultivated since being bald; the lengths of hair that were cut were with me all through chemotherapy.  The longest strands were the ones that never fell out.  I didn't exactly feel sentimental about this hair (it was pretty damaged, and chemotherapy does not conjure fond memories), but I felt like I should have said a few words to let it know that I appreciated it.  Those strands fought hard for their place on my head, and they tried to keep me warm when no other strands would.

Another feeling that led to the disquietude of the haircut is that I yearn for longer hair.  I don't look like myself with short hair.  I can't explain it, but there is a disjunct between how I feel and how I look.  When I think of myself, I still think of a girl who should wear a ponytail from time to time.  My ponytail ghost is long gone (I had one for several months), but I still miss the feeling of hair brushing on my neck.  Also, it is no minor variable that the short hair makes me look like my brother.  Perhaps if I didn't look exactly like a confirmed dude, I'd be more comfortable with short hair.  

This all got me to thinking about why I was cutting my hair.  If I'm so anxious for it to get long again, why would I cut it?  For beauty?  That doesn't seem like something I'd do off-hand.  For order is more like it.  I wanted to bring order to the disorder, or as my husband likes to put it, look like I have a PhD.

But sometimes, isn't order beautiful?  NPR did a story about a Swiss artist named Ursus Wehrli who photographs jumbled up things

and then organizes them.

My hair is no work of Wehrli (although I'd like do see what he'd do with it!), but his way of organizing things really is beautiful.  The other thing that struck me about his work is how beautiful the chaos is before he organizes it.  So I will proceed in a brief state of ordered hair, until my next haircut in six months saves me either from the brink of hair pandemonium or a mullet, whichever is worse.  And I'll be beautiful the entire time.  

The power of suggestion, in three acts

This is not the post I sat down to write, but witnessing the events unfold might give us something interesting so I'm going to roll with it.

*********************************************************

ACT I

I am feeling extremely nauseous right now.  I'm not even kidding.  I might have to take a break and step outside for a moment.  Okay, I got a glass of cold water and threw the hat across the room.  That's a little bit better.  I wonder how long it will take to pass?

No, it is not something I ate.  No, I am not coming down with something.  All I did was put on a crocheted stocking hat, and within 30 seconds I needed to sit down or puke or both.

See, it's chilly in the house because the thermometer is on its way down to 36F tonight.  Although I have a fair bit of hair now, it is short, and as my neck got chillier and chillier I thought I'd put on one of my favorite crocheted hats from cancer treatment rather than turn on the furnace.  Mistake!  The nausea came rushing in.  I'm still having trouble shaking it.  I might have to eat a piece of chocolate zucchini cake just to show my body who's boss.

What a horribly powerful response from a seemingly innocuous accessory.

I think it's clear that my body is associating the crocheted hat, or perhaps the feeling of a head covering, with the side-effects of chemotherapy.  I wonder what I can do to get over this.  Is this yet another thing that I just have to power through, boldly wearing hats until my gut is desensitized?  Between the passage of time and the colder weather necessitating hat-wearing, I hope to overcome this nausea-induction soon.

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ACT II

The girls have been exceedingly tricky at bedtime lately.  Other words for tricky include naughty, argumentative, manipulative, crabby, over-tired, whiny, and pesky.

Eleanor's thing is to persistently get out of her bed.  She has always done this, but the problem has been exacerbated since starting daycare.  No, it has nothing to do with them, it's me.  I pick her up and cuddle her back to bed where I used to just lead her back to bed.  I used to just be able to steer her head back to bed, but with the advent of daycare I miss her and want to make sure she's getting enough love.  So when she wanders out of her room to find me, saying "Want to cuddle?  Want to cuddle?"  I melt.  I cave.  But this short on-the-walk-back-to-bed cuddle-tease just makes her more persistent.    

Azalea's thing is to never have anything quite right.  Mom, the water bottle isn't full.  Mom, my pillow's not good.  Mom, my sheet is neither covering my foot nor abutting my bed rail nor laying precisely parallel to the long edge of my mattress.  These things go on, and sometimes she works herself up into hysterics for no reason at all and is inconsolable.  This is all happening, mind you, while Eleanor is escaping and returning.

With Eleanor I had a good idea how to solve the problem (don't pick her up, idiot), but with Azalea I was a bit lost.  I consulted the best child-rearing book ever and learned that one strategy might be to make sure she feels safe in her room.  She might be stalling, and upset about failed stalls, because she is feeling insecure about some element of going to sleep.  Also, this book reminded me of something I know but didn't think to employ at bedtime (because they're just supposed to go to sleep, dang it!!!):  positive reinforcement.

Well, for three nights now I have upped the ante on my bedtime parenting, and already it is working.  Every time Eleanor got back into her bed, I showered her with accolades.  Whenever Azalea started to fuss, I assured her that her room was safe, that I would keep it safe, that I would be nearby, and that she could ask for me if she REALLY needed something.  I told them both that they were being good girls.

Success!  Tonight Eleanor only got out of her bed twice, and in the first three minutes after I left the room.  Azalea only had one small issue with the coordinates of the sheet and no tears at all.

Now who's manipulative and tricky, huh?  Thanks for your suggestions, Ms. Leach.

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ACT III

In my last post I had much to say about being comfortable with my new body.  It was as much to empower myself as to empower other women.  That's not to say I don't believe those things, but it helps to say it to believe it.

Yesterday I got two really great compliments on my glasses, of all things.  One day, two compliments from complete strangers.

It struck me as funny that I spend so much time thinking about how different I look, both from how I think of myself and from other women, but it turns out that other people don't even notice or care.  They just really like my glasses, and perhaps the way they compliment my face.

The compliments suggested to me that perhaps I'm looking good these days.  This was good to hear because I still see myself as looking better than that time I had cancer.  I stubbornly associate "looking good" with how I looked before cancer.  Perhaps it's time for me to adjust my self-image and take the suggestion.

Evolution of a scar

I've been doing some reading lately about breast reconstruction.  Not about the gross science-y stuff about reconstruction, but the social and psychological stuff.  I'm not at all considering reconstruction, but now that I'm not in the thick of cancer treatment I've found myself curious about why women get reconstruction.  Yea yea, isn't it obvious that the appearance of two breasts is better than one or no breasts?  This is probably what I would have thought, if I had thought about it Before.  But now that I've journeyed through the cancer treatment gauntlet, I'm not so sure.

First of all, surgeries are both painful and a pain in the a$$.  Everything hurts, and continues to hurt long after the hurt is supposed to be gone.  Electing for surgeries that are not a necessary part of cancer treatment is currently beyond my capacity.   

Secondly, if I was uncomfortable with artificial body parts before, why should I suddenly be more comfortable now?  Especially with a relatively expendable body part?

We all know, or at least have learned by now, that I am a practical person.  The above viewpoints should therefore come as no surprise.  However, I am in full support of other women choosing reconstruction.  I am therefore trying to learn why they make this choice.  My purpose is not to see if I'm right or wrong, but to learn about these other viewpoints.

In my small, non-scientific survey, I have found that the perception of others is the primary reason that women choose to reconstruct.  I have determined this by reading dozens of anecdotes in numerous books. Most women want to look good (normal?) in clothes, and they want to be sexually attractive.  What I find interesting about this is that it seems to me that retaining attractiveness is at their own expense, both in terms of potential medical problems with the reconstruction and the fact that the reconstructed breast often has no feeling.  Did you know that latter fact, about the loss of feeling?  It seems obvious, but I never thought about it before and I didn't know that.  It seems to me that if I had no feeling in my reconstructed breast that that would be a constant reminder that it was for someone else and not me.  Call me selfish, but I would hate that.

The other way of thinking about "wanting to look good in clothes" is a positive self-image.  Many women state that they just don't feel like women without the appearance of two breasts.  This underscores the importance of continued improvements in reconstruction technology and healthcare support.  Also, mastectomy is not the only condition that might lead someone to opt for breast work.  Reconstruction is a good choice for women who may psychologically struggle otherwise.  

I'm sure there are others, but I've only read about one woman thus far with an attitude similar to mine.  She thinks of herself as an Amazon, a strong and active woman who can now execute her life with improved physical prowess in the absence of a breast.  I don't yet see myself as an Amazon, but I can relate to the improved functionality of my new physique.

Also, I'm learning to see the beauty in my asymmetry.  I hold my head high and walk around with confidence.  My spouse constantly affirms my beauty.  I have bought a few new shirts that are asymmetric and complimentary.  I can now see asymmetry everywhere in the world, and it has unusual beauty.  I truly do not feel that I need a reconstructed breast.  

My scar itself is also remarkable.  It keeps changing.  Will it ever stop?  It started pink, then turned to white (perhaps because of radiation?), then pink with white in the middle, then red with white in the middle, and now a deep red.  It's slightly raised in some places, yet exceedingly smooth in others.  It itches sometimes.  The evolution of my scar is symbolic of the psychological journey about breasts, sexuality, and beauty that I am on.  Always interesting and never done changing.