Thursday, October 27, 2011

A certain proclamation was signed

It was a beautiful day to walk the grounds of the capitol.

The grounds include a remarkable veteran's memorial.

I had forgotten just how fetching Iowa's capitol is, both outside and in.

Then we went into the governor's office for the signing.  All 20 of us crowded around him as he read the Inflammatory Breast Cancer Awareness Week Proclamation aloud from his desk chair.  

(Thank you, Andrew, for the movie.)
After he read it, he signed it.    

Then we gave him some shirts.

A good time was had by all.  What a change from October 27, 2010, when I had a port placed and started chemotherapy.  Thank you to everyone who came out to show your support, especially my high school AP biology teacher, Mrs. Stroope.  You are all really something.

Tuesday, October 25, 2011

Something's spreading, and it's not cancer

Knowledge of inflammatory breast cancer is spreading.

For my birthday, my mom sent me the New Mexico Inflammatory Breast Cancer (IBC) Awareness Proclamation.  Framed.  Great job, mom!

On my birthday, my cousin knuckle-bumped with the Governor of Nebraska as he handed over an IBC Awareness Proclamation for that flat, I mean great, state.  You rock, Bec!

My dad, stepmom, and sisters designed some lovely IBC awareness long-sleeved running shirts that we're selling for $20 (sizes men's M-XXL).  We'll donate the profits to the IBC foundation (after we order some more feminine sizes; I'll alert you when they're available).  I'll have to figure out a better way to handle the orders, but for now just email my sister (hollyasman at gmail dot com) if you want to make a purchase.
And today a woman from the local medical clinic interviewed me for an article about IBC and the Iowa proclamation.  I independently sent out a press release about the proclamation-signing that will take place on Thursday, but the interviewer said that she would also write a release.  We'll see if anyone picks it up.

One of the questions in the interview was why I'm doing this.  Not that I'm doing anything alone, but I think she meant why I'm putting so many personal details out there (here) and spending so much energy on advocacy.  The obvious answer is because I want to educate others on the very existence of this disease.  If folks know about it, they can push for the appropriate medical steps to ensure an early diagnosis of a suspicious breast, decreasing the likelihood of deadly metastases.  (It's not cancer in the breast that kills a person; it's cancer that spreads out of the breast to the brain, lungs, or liver.)

The less obvious answer is perhaps self-serving:  catharsis, fun, and intrigue.  It helps that I'm relatively brave (you only live once!), and that I'm a fast typist.  Blogging isn't an enormous time investment for me.  But if I keep up the current pace of blogging and advocacy, I'm going to be in serious need of a housekeeper.  

I'd like to end with a shout-out to my awesome family for the surprise birthday party last night.  It was my first surprise party, and indeed I was surprised!  Who knew 31 could be so incredible?

Friday, October 21, 2011

All clear

PET scan results:  CLEAR

Right breast = clear
Sternum = clear
T9 vertebral body = clear
Lungs = mostly clear.  7mm node gone, but a few other tiny infectious-looking particles.  Go, immune system, go!

And I will officially live to see my 31st birthday on Monday.  Thank you, Dr. Oncologist.

Thursday, October 20, 2011

Coping with Crap 101

My place of work celebrates numerous observances, from black history month to gay and lesbian awareness month.  A few weeks ago, a scientist at work approached me and asked if I'd be willing to be the breast cancer awareness month speaker.  I hesitated only momentarily before agreeing to do it.  I thought it could be fun.  So I invited one of my nurses to co-present with me, and our presentation was yesterday.  Needless to say this is why I haven't had time to compose a blog post this week.

This marvelous poster was made by a talented artist at my place of work to advertise within my place of work.

Oh my goodness I felt like I was doing a live sketch of a Lifetime original movie, complete with moist, red eyes in the audience.  It was also a lecture in Coping with Crap 101.

In the days before the presentation I was really nervous.  My scientific colleagues can attest that I no longer get very nervous before a typical public speaking event.  This, however, was oh so different.

This presentation was so personal, and I didn't really know what details people would want to know about.  With science I can find a punchline, and people will learn what I want them to learn.  In presenting my journey through breast cancer, I didn't want to presume that I was the only one in the universe to have taken this journey, but I also wanted to educate the young people who might have no clue what goes on with cancer treatment.  Turns out that's a fine line to walk.

So, I tried to keep it a tad bit scientific.  This is of course what I know how to do.  My nurse presented first and laid the groundwork for the different types of cancers and what the details mean.  When it was my turn, I framed what I was going to tell them as a breast cancer case study in the context of what my nurse taught them.  I tried to step away from myself, otherwise I was sure to sob my way through it.

But sob I most certainly did NOT!  I even snuck in a few jokes, which was easy considering I chose to include such delightful cancer bonuses as the sinus UFO and my original displeasure with the port.  I did get choked up at times, mostly when I thought of my own mortality or everything my loved ones did for me throughout the ordeal, but I was able to power through.  Also, a new thing for me was to include "readings" in my presentation, and these were from my blog.  Wow was it handy to have this treasure trove of insights in real-time.  I chose five portions of posts that I thought were salient thoughts from a given time, and I read them aloud at relevant points in my presentation of slides.  (Thank you, Martha, for inviting me to read at your wedding so that I could gain some experience in the public reading department.)

When it was my turn to present, my nerves were totally silent.  That's standard for me.  My nerves just know that there's no turning back now, so why be that person with the jittery laser pointer?  May as well calm down and save some face.

Afterwards, however, the nerves spiced up again.  For many hours I couldn't figure this out, because after a presentation is over I should be overcome with relief.  But here's what I've figured out:  the presentation made me re-confront the gravity of my former disease.  On an ordinary day in my marvelous life, I spend exactly zero seconds thinking about 40% chance of blah blah blah in 2 years, only 40% median blahsey blah in 5 years.  But that dang presentation made me think about all of those horrible, horrible statistics, and to realize that year number one is already over (happy cancerversary to me, today in fact).  Needless to say it took me until bedtime last night, with some furious playing and crocheting in between, to get a grip on my heartbeat.

Speaking of my nervous heart, I have a PET scan tomorrow.  Yay if it comes out clean, boo if it doesn't.  I won't know the results right away, but I'll post them as soon as possible.  We are hoping:  T9 is still clean, that a certain 7mm node in my left lung has mysteriously disappeared, and that there is NOTHING NEW.  Geez I hate PET scans.        

Friday, October 14, 2011

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.          

Monday, October 10, 2011

Darn those things

I apologize for the inconvenience, but the IBC awareness proclamation signing has been moved to Thursday, October 27th at 1:45.  Attendees should arrive 10 minutes before the signing.  If you want to come, please RSVP to hollyasman at gmail dot com.

I continue to be amazed by society's lack of respect for breasts, real or fake.  My friend Torey just sent me a link to this news article describing a woman who was embarrassed by airport security.  She survived bilateral mastectomy and had tissue expanders in place prior to future reconstruction.  This is a standard procedure for certain types of reconstruction because you can't just make a breast out of nothing; you either need to add tissue from other places or stretch the tissue that is there.  For the latter procedure, a plastic surgeon inserts this hard, fill-able pocket under the pectoral muscles and gradually injects saline over the course of several weeks until the new "breast" is of the desired size.  This is pocket is called a tissue expander, and it is replaced by a saline or silicone implant after the expansion is complete.  

These tissue expanders must have looked unusual on the x-ray, perhaps even bomb-like, and this poor woman was more or less harassed about them although she had proper medical documentation.  The officials did not allow her to present her documentation and insisted on feeling her up in front of the other passengers.  I can think of so many reasons that this would be awful, public humiliation aside--the breasts themselves were probably quite sore, and the woman is in the midst of a difficult breast transition period both physically and mentally.   Poor thing.      

Isn't it ironic that her real breasts were real and cancerous bombs, but her reconstructed breasts were the ones accused of suspicious activities?


Thursday, October 6, 2011

Happy Birthday, Azalea!

My big girl turned four years old yesterday.  Weeks ago when I asked her what she wanted to do for her birthday, she said she wanted a party at Grandpa Russ's house.  Well, there's already going to be a party at Grandpa Russ's house this month (Halloween weekend, costume party, you should come), so I asked her to make a second choice.  She chose bowling.  I must say, this was a Working Mom's dream come true to not have to clean the house or cook a meal.  Make a reservation, send invitations, bake a cake, DONE.  

We collected the lightest balls in the alley, but they were still quite heavy for 2-4 year-olds.  We therefore borrowed the ramps that enable folks in wheelchairs to participate in the joy that is Bowling.  The only challenge was keeping Nori from trying to use them as a slide.  

Azalea got a spare on her first roll.  I'm not sure if the photo below is of her spare, but note that her feet have left the ground in celebration of pins knocking over.

For weeks I had been asking her what she wanted for her birthday, and all she wanted was chocolate cake with chocolate chips and M&M's on top.  So that's what we got for her.  In fact, she and Eleanor helped me make the cake the night before, so I suppose it's like she made that present for herself.  Her delight was boundless.  

The kids were bouncing off the walls before the cake.  With the cake consumption came a few peaceful moments.  Then the kids were bouncing off the walls again.  Present opening, however, was a sober affair.  Everyone was curious, attentive, perhaps even critical.

Now that our bowling, eating, and opening was complete, it was time to take that bouncing to the house.  The bouncy house, that is.  Our local bowling alley has a free bouncy house in the back, and it was a great way to cap off the party.  

Thanks to Nadia's mom, Akiko, for the wonderful pictures.  Thanks to everyone for a great party.  

Azalea, you are a wonderful daughter.  So clever, so silly, so sweet.  I hope you had a great birthday!  

Love, Mom.