One cancer, three state proclamations

The other day my sisters gave me the best surprise I've ever had.  I was blindsided by their thoughtfulness, dedication, and ability to keep it hidden from me for so long.

My sisters Holly (left) and Hilary.  Yes, they are identical twins.

They saw on the Inflammatory Breast Cancer Foundation website a section about state proclamations.  Here they learned that six states have signed proclamations to have an Inflammatory Breast Cancer (IBC) awareness week.  They contacted the president of the foundation to find out what to do to get a proclamation in our state.  Who knows what they had to do or how long it took them (maybe they can comment on this), but thanks to my sisters the governor of the state of Iowa is going to proclaim an IBC awareness week!  He's going to sign the proclamation on Thursday, October 27th at 1:45 pm (note the day and time change) in the capitol.  My sisters and I will attend, hopefully with some of my fantastic physicians.

Not only did they pursue this proclamation in Iowa, but my cousin is working on Nebraska and my mom secured New Mexico just this past week!  One cancer, three states!  The best part is that it takes 10 state proclamations to force a national proclamation.  New Mexico was state #7, Iowa and Nebraska will be #8 and #9, and someone we don't know is close to getting California...#10!

I am just so proud of my sisters and these proclamations.  I can't write about this without tearing up.

An IBC awareness week might seem to some like political window dressing.  It's not.  IBC is a vicious, aggressive cancer, but it is largely treatable if it is caught early.  The problem with catching IBC early is that most physicians don't even know about it.  My experience with trying to get a diagnosis for what turned out to be IBC is so similar to what other women have gone through.  Women need to be aware of IBC, men need need to be aware of IBC, and of paramount importance is educating the physicians about IBC.  Perhaps an IBC awareness week will stimulate some learning.

Thank you, sisters.         

Cancer can suck it or bite me or whatever

It's that time of year when Federal employees are evaluated for their performance.  A performance year runs from October 1 through the following September 30.  Last week I assembled all of my accomplishments and attempted accomplishments into one 3-page bullet-ed list.  At the risk of being egotistical, I am going to share a portion of this list with you.

I spent a lot of time debating whether or not to write this post.  You see, I want to share my excitement over what I was able to accomplish this year IN SPITE OF cancer.  I want to write this post and tell cancer to shove it.  I want to show the world that I am still a productive human being even though I went through this brain-killing experience.  I want to inspire future patients.  However, I don't want to be too prideful.  I want to stay on the good side of the line between self-confidence and egotism.

But at the end of the day, I'm pretty dang pleased with myself, so let's just give me this one post to gloat a little bit, please?  Thus far in 2011, my collaborators and I have 5 publications that are either published (1), accepted (2), or submitted (2).  I just submitted one of the papers today.  Wow did that feel good.

This is more than I've ever had in a single year, and it happens to be the year of the cancer.  I get all misty-eyed just thinking about the dichotomy between the above list and what I've been through.

Huzzah and boo-ya and virtual high-fives to everyone!  YES you may buy me a drink.

Cancer can suck it.

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.

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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.              

Family pile

Do you know what I just did?  I took a mid-afternoon bath.  I know that some of my readers, both male and female, are bath people.  Indeed, I could name a few who I'm certain have experienced the midday tubbie.  I myself, however, am not a bath person, let alone at a time other than night.  But armed with my newly cleaned tub, I took the plunge and it was glorious.  I am fighting a cold (please oh please don't turn in to a sinus infection, pretty pretty please) and I was dirty.  I find myself wanting for more excuses, but that's all I've got.  And that's okay.

I have discovered the best part of my family members attending college, pre-school, and daycare:  more and better family time.  When one parent's job was to stay home with the kids, the other parent was often rescuing the other parent from the job.  Now the only rescuing we do is of the kids from their respective daytime activities.  This leads to greater enjoyment of our time together.  It's wonderful. 

With this improved quality of family time we have had a most fabulous holiday weekend.  My only regret is that I have not taken enough pictures, although I am glad that I have experienced it with my own eyes rather than through a camera lens.  We grilled out with neighbors, we visited S. and her 4-week-old baby C., our dear friends Darci, Zach, & Sons came up for an overnight visit, and we went to the Gardens here in town.  So many great photo ops, most of which I missed!  But I did finish Eleanor's hat, and she modeled it for me.

We have a great abundance of tomatoes from our garden, and we are not (yet) canning people.  So we have been making all sorts of delicious tomato things to make sure we eat them before they spoil.  I have made vats of bruschetta topping and pico de gallo, and Ian has made four loaves of tomato bread (I can't link to a recipe because he just makes it up every time!).  While he was making the bread, the girls played with flour and made their own creations.  This is such a small fraction of the wonderful family time we had this weekend, but hopefully it conveys the message.

       

  

Bike date with Nori

Spending time with one of your children without other children is a rare and wonderful occurrence.  It never occurs naturally, so sometimes we just have to schedule it.  My most recent one-on-one time was a bike date with my youngest daughter, Eleanor.  I biked with Nori in tow to a nearby playground.  This playground is novel for her because it's not in walking distance and so we rarely go there.  I suppose it's a "destination" playground.

At first Eleanor asked for her sister, and I thought she might be nervous about ditching Azalea.  But as soon as she realized she was getting special Mommy time, she played intensely without any further mention of her sister.

Eleanor is a lovely, happy, easy-going child, but she has a great stink eye.  It's a scowl so deep that her eyebrows sink to her lips and you fear some great judgment is upon you.  I'm not sure what the stink eye is about in the picture below.  Perhaps it was a premonition that I was going to let her fall out of the swing.  (Only her pride was injured.)

Thankfully, the stink eye didn't last, and we buckled up to find some more fun around town.  Cheese!

We biked down to the river valley.  We decided to pause our bike ride one more time and throw some rocks in the river.  Nori loves to throw rocks into bodies of water and watch the circles grow and grow.  

I helped her choose the rocks.