Reflections

As I frantically try to organize some fun to ring in the new year, I am reminded of what I did or did not do last year at this time and why.  I remember the fog of fatigue and nausea that rolled me into 2011.  I remember the brain scan in January, the metastasis scare in February, the mastectomy in March, the biopsy in April, the last day of radiation in May, and finally the summer of recovery that led to the most glorious fall.    

My reflections reminded me of my favorite houseplant.  In college I started the plant from a cutting from home, and it moved with me from the dorms to apartments, from upstairs to downstairs, from North Carolina to Wisconsin.  But when the plant and I finally moved back to Iowa in April 2009, I mistakenly thought it would be okay on the porch overnight.  It froze.  It died.

Just when I was about to throw it out, I saw something amazing.    

It was growing again!  From the center of death and decay sprang a tiny, vibrant leaf.  Over the past two and a half years, this single leaf has given rise to my old favorite plant. 

I feel like the beginning of 2011 was the center of my death and decay.  But look what has sprung forth this year in my life:  from activism (three state proclamations in support of IBC awareness) to career accomplishments (five accepted publications) to family joys (two potty-trained darlings)!  I have overcome the trauma almost as effectively as my houseplant.

Here's to the end of a trying yet remarkable year.  Happy 2012 to all of you!

The stockings were hung at last

After I was diagnosed with breast cancer and told that I had 18 weeks of chemotherapy before the mastectomy, it was clear that I was going to have a lot of time on my hands.  But not the kind of time that I can do whatever I want, like study microbes or bake cookies.  The kind of time in which I'm trying to take my mind off of the nausea or waiting to be called back into an exam room at any minute.  This kind of time begs for a craft project.  So I decided to start a Christmas stocking for my then 1-year-old daughter, Eleanor.  

I had started a needlepoint stocking for my first daughter when she was one, but I didn't finish it before Nori was born.  So like any self-respecting twenty-something, I passed it off to my mom to finish.  I found needlepoint to be tedious and slow, so for Eleanor's stocking I opted for a felt applique model, hoping it would be faster.  It may have been faster if I had bought a stocking of normal dimensions.  But oh no.  What I neglected to notice when I purchased Nori's felt stocking was that the finished dimensions were to be over two feet long by at least a foot wide.  

The gargantuan proportions and exquisite detail made for hours upon hours of cutting and stitching and sequin-ing.  I worked on this dang stocking during most visits to the Oncology office.  And it took me until Thanksgiving to finish it.  It really is a beautiful stocking.  I wonder if it will always make me nauseous, or if that's a temporary phenomenon.

The very day I finished Eleanor's stocking, I received a parcel in the mail from my mother, containing Azalea's unfinished stocking.  All of the needlepoint was done (huzzah!  Thanks, mom!), but the complicated assembly remained.  Initially I was disappointed to have so much work left to do on this stocking, but when I held up Azalea's meager stocking to Eleanor's behemoth I was grateful to have the chance to do some equilibrating.  

I returned to my friendly felt and used more needlepoint to attach the stocking face onto the felt.  I then sewed hundreds of white sequins (snow) around the needlepoint  before sewing on a felt back.  It's still not done, with some holly berries and a jingle bell waiting to adorn, but it was done enough for this year.  

And at last, at the ripe old ages of 2 and 4, my daughters had some stockings for Santa to fill with chocolates, pens, clementines, and socks.      

Eleanor's nauseating stocking is on the left, Azalea's needlepointed nightmare is on the right.

I hope that those of you who celebrate Christmas had a fantastic holiday!  For us, it was the best Christmas ever.  But last Christmas was not a hard act to follow.

IBC awareness shirts are in!

This post may seem trivial, but I decided that it's important since I don't want my dad to end up with a hundred pink t-shirts in a box in his basement.  Besides, bloggers are allowed an administrative post from time to time, right?

Just in time for the holidays, we now have women's sizes of the Inflammatory Breast Cancer (IBC) awareness long-sleeved shirts in stock.  They are pictured on the right, although the blog title has been corrected on the Women's sizes.  A few weeks ago I had a poll on the sidebar, so if you voiced interest in a shirt now is the time to stake your claim.  Feel free to claim one even if you didn't vote--we can always print more.  Please email me at "30carnations (at) gmail (dot) com" with your mailing address and order, and I'll send you a shirt.  In return, please send $20 to my dad (I'll email you his address).  

Profits will be donated to the Inflammatory Breast Cancer Foundation in support of raising awareness of IBC.  Thank you for your support!

Bye bye, Scaffold of a Person

Long-time followers will note that I haven't been updating my Scaffold of a Person lately.  I started Scaffold of a person about a month after starting this blog, as a way to introduce my various loved ones to each other and give me the opportunity to honor them publicly.  The idea came about after I spent an afternoon with a new friend and I was too sick to come up with a respectable conversation topic based on the few details I knew about his life.  I called these few details his scaffold.  I then got to thinking about the scaffolds I'd build for everyone else in my life and decided to post them on the blog periodically.

I set up a spot on the blog and wrote a few sentences about someone that was on my mind at the time.  I decided not to make it a page on the blog that would have permanent memory, but rather a temporary gadget in which an individual's scaffold would hold brief literary form before disappearing forever.  I thought that this model was true to the very definition of a scaffold, and how it changes with time.  It was a lot of fun for me, and many of the folks I scaffolded were tickled about it.

However, this rather bohemian model for lack of scaffold retention is not without consequence.  Considering that one of the side effects of cancer treatment is temporary impairment of brain function, it is not surprising that I have no idea who have I and have not scaffolded.

My solution is to discontinue the Scaffold of a Person.  This is because I don't want to twice scaffold a friend I haven't seen in 10 years if I failed to scaffold my mother, for example.  Although I've forgotten just about anything that happened between Oct. 2010 and June 2011 (turns out that's not such a bad thing), I'm sure each of you are very clear whether or not you were appropriately scaffolded.

I just can't in good conscious continue scaffolding.  I want to be an equal opportunity blogger.  I suppose I could accept nominations for an individual to scaffold, but only if you are sure that I didn't scaffold them previously.  

My apologies to those of you who will miss Scaffold of a Person, and to those of you I should have scaffolded.  I blame my poor record-keeping, and, that's right, cancer.     

Fitness and Cancer: Why It's Important to Stay Healthy

I was recently contacted by cancer survivor David Haas of the Mesothelioma Cancer Alliance Blog about guest posting on my blog.  We have similar philosophies about the importance of support networks and physical fitness to fighting cancer.  I started this blog to keep my support network at arm's reach throughout my cancer treatment.  My favorite forms of exercise are walking, biking, and yoga, and even on my sickest days I found someone to lean on to walk me down the block and back.  Love and movement are powerful medicines.  Call on your friends or family to help you get a dose of each.   

Everyone agrees that exercise and a proper diet are important for maintaining overall health. Staying fit reduces a person's risk for cardiovascular disease, diabetes, and improves muscular strength and endurance. This is even more important for people dealing with cancer. Whether they have just been diagnosed or are in remission, staying fit means responding to treatment better, increased energy levels, and a higher quality of life. Unfortunately, exercise is likely not to top the priority list of a cancer patient. The effects of cancer, and cancer therapy, may leave a person with little energy or desire to exercise.

For active people, daily exercise and a healthy diet may already be habit. They may need to modify their exercise routines to fit their new needs, but can maintain normal activity. People who are less active may find it difficult to focus on fitness, especially if they have recently been diagnosed with cancer, but should consult their doctor and develop an exercise regimen and healthy diet.

Any cancer patient knows that treatment is heavily taxing on the body making it difficult to find the energy to exercise. However, poor fitness and obesity are connected to complications during treatment, increased risk of recurrence, and higher mortality during and after treatment. Fit patients respond better to treatment and cope better with the side effects of cancer therapy. There is also a growing body of evidence that indicates exercise and a healthy diet can actually prevent cancer. For cancer survivors, exercise and a healthy diet can help keep cancer in remission. For sufferers of lung cancer or mesothelioma, exercise can mean being able to maintain daily functionality. Light aerobic exercise maintains and increases lung capacity leading to increased oxygen levels.

While the main focus of cancer treatment is on survivability, doctors are paying more attention to improving quality of life. Exercise and a healthy diet contribute significantly to increased energy levels and positive outlook, helping cancer patients to cope with the rigors of treatment. Post-treatment, cancer survivors should continue to focus on staying fit. Daily exercise and a balanced diet will help the body recover and prevent cancer from recurring.


Thank you so much, David.  You have inspired me to make a new page where I have collected posts related to my exercise and cancer experiences.  

Hasta la vista, baby

On Friday I met with Dr. Oncologist for what was called my Survivorship meeting.  This meeting occurred exactly one month after my last herceptin treatment.  We reviewed all of the bodily changes that have occurred since the discovery of inflammatory breast cancer in October 2010.  We also discussed the (or what should be my) primary concerns moving forward:  the possibilities of recurrent cancer, heart problems, and lymphedema.  (Note:  I don't have heart problems, but any heart that has been through what my heart has now been through should be scrutinized and carefully maintained, apparently.)

These possible problems are just that--possibilities.  I have none of these problems today, and I probably won't wake up with these problems tomorrow.  So I'm just going to go about my life as usual; turns out I'm really really good at going about my life as usual.  Dr. Oncologist has only four instructions for me to follow to try to maintain today's health status:  no smoking, no drinking alcohol, keeping the body mass index (BMI) below 25, and exercising.  These things should be no problem for me, although when I mentioned my new fondness of yoga and she said that that isn't the kind of exercise she's talking about.  She means the type of exercise that gets my heart rate up.  I guess I'd better find a way to start biking to work again.    

Also at the survivorship meeting I met with the outreach nurse, who gave me 12 CD's full of tips for cancer survivors.  I'll be sure to play those at our next house party.  She also gave me a spiral-bound booklet of written tips for the survivor.  These tips include many what-to-expect-when-you're-surviving tidbits like pre-menopausal symptoms, months of lingering fatigue, and emotional difficulties.  Um, thanks, but this information would have been useful yesterday (in July).  I physically and emotionally processed the bulk of my cancer treatment recovery and survivorship issues months ago.  The booklet probably could have been useful at some point, but its delivery was poorly timed.

Needless to say, I am not suffering any cancer treatment separation anxiety.  I have read that some patients are very sad to be done visiting the place that saved their lives, where they now have lots of friends and a fixed routine.  They also get nervous that now they are back on their own with their bodies and are expected to find a recurrent cancer all by themselves.  Maybe my separation from cancer treatment is too recent, or conversely maybe I went through this months ago when I was done with the hard cancer treatments, but currently I am not suffering any of these emotions at all.  Indeed, when I walked out of my last herceptin treatment a month ago, I don't think I've ever held my head higher.  I waved at the receptionists, all on their phones with actual cancer patients, and I strutted out of there, no longer a cancer patient.

So I'm officially a survivor now.  I will miss my clinic cancer friends, but I'll still see them around.  Indeed, I still get to go in every three months for PET scans, but eventually that will be every 4 months, and then every 6 months, until finally I just have a PET scan once per year.  Like getting my eyes checked.  

It's been a long time since I posted a song.  I don't know why I haven't posted songs lately; I still love music.  But this post is begging for a song.  Only one song, really.  In this song, I think the "I" is me, and the "you" is the oncology waiting room.  Hasta la vista, baby.              

I've said it before, and I'll say it again.  Cancer can suck it.  

The effect of antibiotics on swine gut microbiomes

As promised, here is more information about the research of mine (+ lovely coauthors) that was published today.  The below article was posted on the mBiosphere blog and was written by Merry Buckley (please use this original source when reposting).  I am reposting it because it 1) has a cute picture, 2) gives a nice framework and summary of the paper, and 3) I am feeling too lazy to write my own synopsis for you.  Enjoy!   

Antibiotics stimulate gene exchange in swine gut microbes

Antibiotics: they’re not just for curing the sick. Livestock farms in the U.S. regularly use antibiotic drugs as feed additives to boost animal growth, but a study in mBio this week reveals new evidence that adding antibiotics to pig feed stimulates gene exchange in the guts of these animals, a development that could move antibiotic resistance genes where they’re not wanted.

Using antibiotics in animal feed saves farms money, but opponents argue the practice encourages antimicrobial resistance among bacteria that could well be consumed by humans. Today, livestock producers in the U.S. use an estimated 24.6 million pounds of antimicrobials for nontherapeutic purposes every year.

The study by Allen et al. adds to what we know about what happens to the microorganisms that populate animal digestive tracts when they are exposed to these low, persistent levels of anitbiotics. Researchers at USDA’s National Animal Disease Center (NADC) in Ames, Iowa studied how two in-feed antibiotic formulations affect prophages, segments of DNA found in bacteria that can encode antibiotic resistance genes and other genes that impact bacterial fitness. Prophages can cut themselves out of the larger chromosome of DNA in a process called induction, then replicate and package themselves as viruses. These viruses explode the cell from the inside, then move on to infect other organisms and deliver their genes.

Lead author Heather K. Allen says when pigs were fed antibiotics, the actual numbers of antibiotic resistance genes carried by the phages remained steady, but the microorganisms still reacted to the presence of antibiotics. Prophages underwent a significant increase in induction when exposed to antibiotics, indicating that medicating the animals led to increased movement of prophage genes among gut bacteria.

“Induction of the prophages is showing us that antibiotics are stimulating gene transfer,” says Allen. “This is significant because phages have previously been shown to carry bacterial fitness genes such as antibiotic resistance genes.”

Studies that explore the impacts of in-feed antibiotics most often focus on the bacterial residents of the gut, according to Allen, but phages and other viruses move a significant amount of genetic information around the community. This makes changes in prophage induction an important collateral effect of antibiotic treatment, she says. Resistance genes are the unit of currency among microbes experiencing the duress of an antibiotic, so following the movement of genes is arguably more important than following certain changes in bacterial communities. And if bacteria in humans acquire resistance genes from animals, there can be serious health consequences.

“What’s important is the transfer of a gene that could get into the wrong place at the wrong time,” says Allen. “Increased gene transfer is a critical event in the evolution of gut bacteria.”

A breath and...breathe

photo by Sam

For me, the best parts of the holiday season are spending time with loved ones and taking a break from the usual routines.  I took a break from this blog (thank you for tolerating that) and from work, both of which were refreshing and much needed.

November got so crazy!  It started off with two scientific presentations, one here and one in The Netherlands, and ended with a holiday.  In between I had to review proofs of a manuscript that has my name on it and is being published tomorrow, go to Iowa City for a surgical follow-up, and be interviewed for a press release regarding the aforementioned manuscript.  I almost forgot to re-up for yoga, that's how discombobulated I was with all of these unusual tasks.

But I most certainly did sign up for another five weeks of yoga.  I must stay centered and stretched.

The surgical follow-up involved many mammograms of the right breast.  Suspicious shadows were noted, due to the scar tissue from the needle-localized biopsy last April.  Suspicious shadows were further visualized by ultrasound and palpated by radiologists and surgeons.  Importantly, Dr. Surgical Oncologist is not at all concerned and is certain that the suspicious shadows are scar tissue.  I, too, am certain.  Unfortunately this scar tissue will probably always be there, so I will probably always have extra -grams and -sounds and -scans.  An irony that a procedure to remove suspicious breast tissue left perpetually suspicious breast tissue in its wake.

After the appointment but before returning home, I had lunch at Masala.  All vegetarian Indian food buffet, all delicious.  I will say that it was odd to eat at a buffet by myself.  I enjoy (dare I say "savor"?) time alone, and I don't mind dining alone, but adding the buffet variable made things less enjoyable.  I found that I ate altogether too quickly and had trouble timing the second trip.  It's hard to slow the pace of consumption when there is no one to visit with between bites.

Regarding the work things, the manuscript should be coming out tomorrow, and someone at the journal thinks it's a cool article.  So she decided to write up a press release for it, and interviewed me over the phone.  I was quite nervous because I've never been interviewed for my science before.  I felt a lot of pressure to say things perfectly, which made me say them horribly imperfectly.  But I survived, and I'll do better next time.  I'll post the manuscript when it's available, and I'll save the summary of the science until then.  Needless to say, the hub-ub surrounding getting this article out has felt intense and distracting.

Thanksgiving, therefore, couldn't have been timed better for me.  I needed to take a deep breath, step away from my month of diverse yet pivotal events, and just breathe for a few days.  I spent excellent time with the usual family...

photo by Sam

photo by Sam

...and with family from afar.  I played games, I made deviled eggs, I went to playgrounds, and I stitched the last stitch of Eleanor's Christmas stocking.  This last item is significant because I worked on it during nearly every Herceptin treatment these past 8 months.  I suppose it's a bummer that I will always think of chemotherapy when I look at that dang stocking, but it was a great task to have during that time.

Which reminds me, the Wednesday before Thanksgiving was my first free third Wednesday in one full year. That is, it was my first Wednesday free from Herceptin treatment when I should have been receiving Herceptin treatment.  That deserves a celebration and a blog post unto itself.

Hopefully I will carry the rejuvenation from the holiday weekend for several days, if not weeks, to come.

Was your holiday pleasant, if not fantastic?  Did you have a moment to breathe?

The Netherlands

I arrived in the Amsterdam area airport with 24 hours to spend before conference time.  My conference was providing free shuttles from the airport to the conference town (Egmond aan Zee), so I opted for an airport-based tour of Amsterdam.  Best 50 euros I've ever spent.  

The tour lasted 2.5 hours and was given by a fabulous guide in a small van.  It was nearly a personal tour, as there were only two patrons.  We made several stops in and around the city, including by the I amsterdam sign (get it?  I [am] AMsterdam?)

 Amsterdam is full of canals, such as the one below.  Indeed, the whole country is full of canals.  Did you know that if it weren't for enormous pumps operating 24/7, nearly half of the country would be under water?  The famous Dutch windmills used to be the primary water-expelling mechanism for the country, but now they have some impressive technologies to do the job.  The Dutch are hydraulic experts; New Orleans should give them a call.

We also drove past Anne Frank's house, the royal palace, the harbor, and the red light district.  I saw three ladies in windows.  But the highlight of the tour was stopping at a small farm to see how they made cheese and wooden shoes.

The Netherlands is a flat and agricultural country, and very picturesque.  I saw many different types of crops and livestock.  The occasional windmill dotted the landscape.  According to Fabulous Tour Guide, only about 100 of the classic Dutch windmills remain, and although they are not operational they are preserved.  The strategy for upkeep is to let people live in them rent-free as long as they take care of them.  I saw a man out tending his windmill's lawn on a Sunday afternoon.  A clever solution to a historical preservation problem, but bizarre nonetheless.    

Immediately upon arrival in Egmond aan zee I headed for the beach.  It was less than a block from my hotel and visible from my room.  The sun was setting and I just couldn't wait to take it all in.

 

The view of the town from the beach.

In the morning, I still had a few hours before the conference was to start.  So I decided to rent a bike and explore the area.  Finding the bike shop pretty much introduced me to the whole town, so I was more interested in a country ride.  I found a few maps, mostly in Dutch, and was nearly dissuaded from the seemingly complicated navigation of a country ride.  Instead I tucked the maps in my backpack and just started riding.  What a marvelous choice!  There are bike lanes or paths along every road, and it turns out that my chosen route was the Prince's Route (or something) and therefore clearly marked.  It was very beautiful, even in the slight fog.

The route paralleled a national forest/sand dune preserve.  I was lucky to see so much nature in a small country of 15 million people.

And then the fog lifted as I rolled into Bergen aan zee, the town just north of Egmond aan zee on the coast.  

So of course I had to park the bicycle and explore this beach as well.

I pedaled back to Egmond aan zee, returned the bike, and was only 20 minutes late to the conference.  Nice!  The rest of the time I worked very, very hard and took virtually no more pictures.  Save one.  Across from my hotel I realized that there was a tall dune with a path leading up it.  So during one of the conference breaks I scurried up to explore.  Below is a panoramic of the town.  Notable landmarks from the left:  my hotel, the lighthouse, the church in the town square, and the church by the bike shop.

A fast trip, but a great trip.  

I'm in the Netherlands!

In March my boss was invited to give a seminar at a conference in the Netherlands in November.  He was unavailable, so the conference settled for a replacement speaker:  me.  It was a lengthy process to get all of the ducks in a row, but a mere six weeks ago the dust settled and my flight itinerary appeared in my inbox.  I guess it's official.

I'm giving a presentation on alternatives to agricultural antibiotics.  I won't post my slides, but I will post a link to my accepted manuscript (huzzah!) that I'm heavily summarizing, when it becomes available.

The conference doesn't start for a few more hours, and I've been enjoying myself immensely!  The conference is not in Amsterdam, but I wanted to see Amsterdam, so here is the tour that I wanted to take:  

Do be do be do! Unfortunately this tour was cancelled due to a festival celebrating the original Santa Claus.  But I found a different tour that was FANTASTIC.  It included a few quick stops, including a tour of a cheese factory.  It was a quaint little farm where we spoke with the 8th-generation cheese maker.  Huzzah for keeping the business in the family for so long! 

I'm off to see if I can rent a bicycle for an hour or so.  This country has bike paths flanking nearly every major road, and bike lanes on nearly every non-major road.  Incredible. 

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.                     

Freedom

This is it.  I finally made it to the eve of the end of my cancer treatments.  Tomorrow is my last herceptin therapy.  I will get my energy back, I will get my third Wednesdays back, I will get my freedom back.  Despite the momentousness of the occasion, I am entirely underwhelmed by Tomorrow.  This surprises me because I thought I would be unable to contain my excitement.  On the contrary, my excitement is entirely contained.  Per usual, I think this deserves an analysis.

I have read that cancer patients sometimes have a hard time ceasing therapy because they have grown attached to their caregivers.  Also, patients wonder how they can possibly return to life without cancer.  These feelings can sometimes turn into depression.  I think it remains to be determined if I will be susceptible to this, but I don't expect depression to be a big factor.  I will still see Dr. Oncologist every three months for PET scans.  I will still see my favorite nurse around town with her son.  And I can't WAIT to return to life without cancer.  Cancer made me needy, and I don't like being needy.  Sign me up for self-sufficiency, please!  

Right now my lack of enthusiasm for tomorrow seems to be related to something I've posted about before, which is accomplishing a goal that I never should have had.  Also, I'm feeling a strong urge to get cancer treatment out of the way so that I can get back to Living.  I acknowledge that getting to this point was no small feat, it's just hard to embrace a celebratory mentality given the subject matter.  I guess I would say that I successfully toughed it out.  Yay?

But there is something that I was inspired to celebrate tomorrow:  my oncologist.  She is brilliant and caring and attentive and thoughtful.  Any guesses what I did to show her my appreciation?  That's right.  I made her a blanket.

    
It's my 12-hour afghan pattern and it makes the coziest blanket in the universe.  For Dr. O I chose three oceanic shades of blue because I envisioned the blanket providing a wave of calm and warmth after a long day of helping sick people.  THIS is where my excitement lies:  in giving her this blanket.

In related news, during the making of this blanket I acquired a protege.  It was only a matter of time, really.

Go, Azalea, go!

I'll end this post with a premature poke tally.  It includes both tomorrow's and the previous herceptin poke, plus the PET scan poke.  I suppose that this is where the poke tally ends?  I must say, I am grateful for that port, otherwise the poke tally would be much, much higher.  Possibly even doubled.  Port, I'm not going to make you a blanket, but I appreciate you.    

port  40

right arm 13

tummy  6

left arm  6

right breast 2++

left breast  1+

superior vena cava 1

T9 vertebral body  1

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.

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?

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.

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.        

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.          

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?

  

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.

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.