Friday, April 5, 2013

Room for expansion

I am finally seeing a light at the end of the zoladex tunnel- thank goodness.  It has been a hard couple of weeks.  On top of the emotional struggles, I greatly underestimated the exhaustion that I would encounter post surgery.  I have a short burst of energy in the morning - and by about one in the afternoon, I struggle to keep my eyes open.  By two, sleep has won.  I lay in my recliner and become completely paralyzed by exhaustion.  I open my eyes occasionally and remind myself that sleeping this much during the day will make going to bed in the evening difficult.  I quickly decide  I don't care, and go back to sleep.  I try not to nap more than two hours- but on some days, I sleep for well past five hours.  When I awake, I feel more zombie than human.  I am only motivated to watch television and explore the internet... art has felt like too much trouble.  I started a drawing a few days ago, but it has taken until tonight for me to complete it.  What is sad is that as I lay in bed immobilized, my brain is constantly in motion.  I imagine art constantly- the way I might depict my current level of anxiety, how I want to draw a picture of my son, the photographs that I have yet to take of this process, the interventions I want to utilize as I prepare for radiation ...  I know I will get to a place where I can create all of these images and at the same time, I have to be gentle with myself.  I don't move as fast as I used to.  That's not only okay- it could be a blessing.

When I am not sleeping, I am generally at random doctor's appointments.  My calendar looks like that of a socialite, only I am not meeting with anyone at the country club. Instead I am meeting with my oncologist, radiologist, physical therapist, or with the nurse practitioner who gives me my weekly fills.  In tonight's post, I thought I would focus on my fills.

So what are fills?  I had what is called a bilateral skin sparing, nipple sparing mastectomy with immediate reconstruction.  When all of the breast tissue has been removed from your body, they can't just give you an implant and say you are done.  They have to create a place for this implant to rest.  They do this with a thing called a tissue expander.  The expander is placed beneath the skin and chest muscle.  Each week, the nurse practitioner uses magnets to find the expander and inject saline into the expander until a nice pocket has been formed where later, the plastic surgeon will place the final permanent implant.  They can not inject all of the saline at once because the skin must stretch and I imagine the pain would be excruciating... so they inject little by little until you reach the desired size.    How much saline is injected will depend upon how large you want your breasts (within limits of course- you only have so much skin to work with).  Unfortunately, you can't say - "I would like a C cup, please fill me accordingly."  On every body frame, a C looks different.  For some women 550ccs of saline might look like an A cup- where as on another woman it could look like a D cup.  So, it is not an exact science.  If they overfill too much and you had a nipple sparing surgery, your nipples could start to drift to the sides of your chest.  Which I guess is not optimum, although with the exception of my husband, I don't plan on exposing my nipples to anyone.  Add to this the fact that I am going to begin radiation, and you have another confounding factor.  Radiation tends to shrink the radiated breast- so most surgeons over fill.  So in conclusion, I have no idea what my final chest will look like.  I am trusting my surgeons with my wishes and hoping for the best.  

My expansion fills are interesting appointments.  I lie on the table and she numbs the area, although it wouldn't matter much since I can't feel my chest.  She then finds the place where she will inject the saline. Apparently a magnet helps find the correct position. As the saline enters the expander, my breast begins to inflate.  I imagine how much I would have loved to have had such a contraption in high school, although I probably would have gone overboard.

Now, let me tell you about expanders.  They can have a whole host of problems- but even when things go swimmingly, they suck.  They are hard as rocks.  I feel like I am wearing a bra made of iron.  I try to pretend that I am Xena, warrior princess- and that this is just my armor... but most days they just make me feel super uncomfortable and sad.  They also tend to drift into my armpits.  I am working with my physical therapist on exercises to bring them back to the correct position, and my surgeons tell me that the final implant will not have this problem, but I have to say that I experience this as a major nuisance of unimaginable proportion.  One of my witty cancer sisters coined the term, "Pit tits"- which makes us all laugh but also allows for some normalcy in what feels all together wrong.  At times, I can't put my arms down to my side.  And on top of all of this, it hurts.  Your skin is expanding and is tight, your muscles ache, and those strange itches you can't scratch (because you have no feeling in your chest) continue to torment me.  I begin to understand why some women forego reconstruction all together.

So for now, I have been fully expanded.  After radiation, we will see if there has been much shrinkage- and if there has been, they will do an additional fill.  For my art project, I wanted to depict something about  this strange process of my ever evolving breasts.  I also wanted to poke fun at the absurdity of this part of my journey.  My daughter made me a lovely set of paper dolls a couple of weeks ago, so I thought - maybe that is what I  should do!  So here she is... with her breasts in various stages of expansion. I like her.  Not sure what I think about her breasts at this point... but she is a work in progress.  Just like I am.

Oh... and here is a picture of my daughter's beautiful paper dolls.  She made these as a present for me.  They came with dresses and wigs.   I am a pretty lucky mommy:-) 


  1. Love your daughter's paper dolls. She wants you to be happy so she creates for you. This is a tough journey you are on and my thoughts and prayers are with you. I think your sense of humor helps a little. ::sending well wishes::

  2. I have learned more about the breast cancer process and treatments through you than from the several years working at a Cancer Center. You do an absolutely incredible job detailing your journey, educating us, and sharing those deep thoughts and emotions. I'm simply grateful to know you. I have thought about you at least once, if not several times a day, as you endure and transcend these painful travels. So inspiring.

  3. Dear Deann, this is Emily (Jem) from BCO/FB. I cannot tell you how much I appreciate reading your blog and seeing the ways you interpret our experiences through art. Your art is so moving and captures the emotions and sadness I feel so movingly. I hope your art can be on display somewhere so that future breast cancer patients can benefit from it. You are truly talented and inspiring. Thank you!

  4. Deann, as always I appreciate your sharing with us. Your comments on the Zoladex post especially caught my attention as I go through a stage of depression myself. It was tough to admit to myself and my MO and those close to me that I am unable to control my emotions right now. So your comments ring a bell and somehow make it easier to accept this time in my life. What I most hope for as do you, is for this to pass and for us to actually be better for it.


  5. my darling beautiful you,
    i am so deeply moved by each of your posts. your ability to reflect, and give honest voice to the many layers of your current journey and epic challenges is profound for both you and the reader. it is an honor to be here with you...and to carry you in my heart when i am away.
    much love to you gorgeous one.