Monday, December 10, 2012


It's been a long time - several months - since I have felt like my breast cancer journey was unmanageable.  It's been a long time since I cried and an even longer time since I have felt sorry for myself.  But last week, the house of cards came crumbling crashing down and it's been a delicate balance to build it back.

About six weeks after my first reconstruction surgery in July, I started to have strong pain in my elbow. Maybe tennis elbow? Haven't played tennis in over ten years, but I suppose it's possible. Twisted it somehow?  Not that I can recall, but crazier things have happened.  So, I went to physical therapy.  My physical therapist, Amy, specializes in breast cancer patients, lymphedema patients and is a survivor herself.  So, to say the least, she has a lot of experience. Amy diagnosed with me axillary web syndrome - also known as "cording".  There is not a lot of research on this particular side effect.  I was educated on lymphedema, something that is common in women that have their axillary lymph nodes removed, but no one talked to me about cording.  Removing the lymph nodes and a build up of scar tissue can both contribute to cording developing.

Cording develops like thick, rope-like structures under the skin. They act like a band on your arm, making it hard to stretch out and extremely painful.  My physical therapy was tough; much of the time was spent with Amy pushing and pulling my arm to get the cords to "pop".  When they actually are stretched to the limit, they making a popping noise, similar to the noise your knuckles make when they are cracked.

After six weeks, I was healed.  My physical therapy worked!  Amy had popped all of the cords in my elbow and significantly loosened the scar tissue under my arm.  I was so excited to be released back into the world of exercise, stretching, carrying Evan, and most importantly, "normalcy".  During my treatment, I was prescribed a lymphedema sleeve, a guard for my hand, had my ribs taped into place and adjustments made to my neck.  Amy said that during mastectomies, the ribs are irritated and can move out of place; that can set off the wheels of motion on the traumatized lymphatic system and swelling and cording.

That lasted for four weeks.

My relapse coordinated with a significant increase in the amount of travel I do for work.  Flying does not cooperate well with cording or lymphedema; the changes in pressure and altitude almost always have a negative effect on your healing arm.  I was on a plane four weeks in a row.

I also started working out frequently at the gym.  Hour long workouts, long(er) runs and lifting weights.  I don't think I'm Jane Fonda, but I am anxious to regain the strength I have lost in the past year.  Amy said that I should resume normal activity and push myself as far as I could.  I was aggressive. I ignored the warning signs. Push-ups.  Planks.  Personal Training.  I should have laid off at the first sign of pain, but I was excited to get back in to shape.

These two things can result cording development, worse and more severe than the first time.  As of today, Amy thinks I have about 10 cords in my arm.  The fluid was measured in my arm and my wrist is about 3 cm  larger than it was just a few months ago.  The swelling has started.  The pain is intense.

This is a picture of cording - this is not my arm.  My arm has to be twisted to show the cords.  But this is what my arm looks like when Amy is working on it - times 10.
This is how my under-arm looks - with about five cords.

Axillary Web Syndrome
**Photo taken by Elisabeth Josenhans, Hamburg, Germany

The cords run from my armpit, gather in my elbow and then continue down to my wrist.  I cannot lift a weight.  I can't hold Evan in my left arm.  I can't even really run because the swinging makes my arm swell even more.  So I am frustrated.  And out of shape.  And sore.

Then, I started noticing weird spots on my body.  A few on my ankles.  One on my thigh.  Two on my face (the worst place to have any out-of-the-ordinary blemish).  I have an appointment with the dermatologist next week but am driving myself crazy.  I bought anti-bacterial soap and scrub my skin with it twice a day.  I am use creams.  Lotions.  I am looking at pictures all over the Internet.  Is it skin cancer?  It is eczema?  Is it ringworm?  The later two can be problematic for former chemo patients that have compromised immune systems.  I'm just thinking, "Let the madness stop."  Enough.

Stop with the pain.  Stop with the weird skin things.  Stop. Stop. Stop.

I can feel my anxiety building up as I head into my third reconstructive surgery on December 20.  This will be my sixth surgery in 12 months, all for various issues. I just want it to work; I want to be fixed; and I want my chest to be even.  I want to feel the benefits of having fake boobs - not the frustrations of having reconstructive surgery.

I have chemo brain which is becoming more and more evident everyday.  I forgot to pick Cohen up from wrestling last week (worst mom ever).  I can't remember words.  I feel sloppy and thick and slushy in my head.  I used to be crisp and sharp.  People used to ask me things because I had a great MEMORY.  Now, Brian just smiles when we get in an argument because he knows I won't remember the details of it two days later.  I am sure this is resulting in a lack of "make-up presents" and it's just another thing to pout over.  I can't even remember why I am mad.

So, I'm frustrated.  I have to fly again on Wednesday and am apprehensive about how large-and-in-charge my arm will be when I land.  No one likes big, fat arm.  Although, I suppose I will take one big, fat arm as opposed to two.

And since I can't remember to get "make-up presents", I might as well start cashing in on my physical therapist recommended arm-massaging.  I hope Brian is up for that while I drink wine tonight.  Substituting wine for working-out?  I guess so.  I know there is no worse pain than chemo...or radiation...or I do keep that in mind.  But I'm ready to kick all of this to the curb.  Wait until I get going about Tamoxifen next flashes, moodiness.  Don't I sound fun to live with?!


  1. Erin you need to get a Lymphedema sleeve to wear when you fly. Go to and get fashionable one. They are more expensive but also more fun. Don't lose hope, it will get better. As for Chemo fog, keep exercising the memory. It isn't gone, just a bit dormant.

  2. Tell Brian I say it is time to quit your job. You have the rest of your life to work. You should be able to focus on YOU and healing :)