Oh, Snap!

There is a sound.  It’s not quite a sonic boom but it’s fast and forceful.  The camera cuts to birds flying out of the trees, fleeing from the danger that the sound must bring.  The camera cuts to me, standing in shock.  As the camera pans to a closeup of my face, you can see tears welling up in my eyes slowing, promising an overflow within moments.  As dramatic music begins to swell in the background, I breathe in suddenly, as if I’d been holding my breath for hours.  Suddenly, a single tear escapes my eye, my face relaxes and the audience realizes that this is a moment of relief.  A release.  That all is well again.

This has been one of my many fantasies that I’ve had about my cords, or axillary web syndrome, breaking or snapping.  I have suffered from persistent and stubborn cording for almost three years now.  And I do mean “suffered.”  While I have had excellent range of motion, the cords have been extremely painful.  Especially my armpit.  Every time I lifted my arm, it was a tight, stretching pain.  I could feel the pull go deep into my chest wall beneath my once upon a time breast and into my scar tissue, down my arm and into my hand and fingers.  Does that make your skin crawl?  Well, it’s not pleasant.  But it was my normal.  I actually got used to being in discomfort.

For those of you who don’t know what cording is, it can occur resulting from a sentinel node biopsy or axillary lymph node dissection during a mastectomy.  One can develop rope or string like structures in your arm.  This can inhibit range of motion and be quite painful.  It is usually diagnosed by a physical therapist or lymphedema therapist (it is separate from lymphedema but can sometimes go hand it hand).  It is posited that most cases for cording resolve within a few weeks to a few months with stretches and therapy.  Read more about axillary web syndrome here.

But I stretched.  I stretched every day.  I went to therapy once or twice a week.  We pulled the cord.  We massaged the cord.  We dug into the cord.  We sang to the cord.  We breathed deeply into the cord.  And we definitely begged the cord.   And each time, nothing.  It would not move.  It was intent on staying exactly where it was.

Then, last week, I was laying on my couch watching tv and I was stretching my arm and with my left hand, stretching the cord as my OT does at her office.  I do this a lot in hopes that it will do something.  It never does.  But last week, out of nowhere I felt the most gentle pop.  It wasn’t even a pop.  It was an effervescence.  And suddenly, in the area where I was experiencing the most pain, the pain was gone.  There was some soreness where the cord had been but the rope like structure in my arm had suddenly disappeared.

Had I done it?  Had I achieved the impossible?  I went to be in disbelief, thinking I might have given it a good stretch.  But when I woke up, it was still gone.  I did it.  “I got you,  you fucker!!!!!!”

I had won the battle but not the war.  There were still more cords.  I still stretched every day.  One day I felt a pop in my wrist by my thumb.  I could always feel several cords there.  The pop felt like when I crack my knuckles (which I sometimes do with my wrist but near my pinky, never my thumb).  When I went to feel the cord, it was gone.  GONE!!!!!!

Then the other day, I was stretching again, and there was a thin cord.  Thin but mighty.  It caused a sharp pain every time I touched it.  But I was used to that pain.  I pulled it.  I tugged it, I dug under it and pulled it up.  Nothing.

But when I woke up in the morning, it was gone.  GONE!!!!!  Another one bites the dust!

I always imagined that when these cords went away, that there would be tears of relief.  But, the snap was so subtle and undramatic, that I didn’t know what to make of it.  With the last cord, I just continued putting cream cheese on my son’s bagel as if it were a normal morning.

I know that there are still more cords that I need to snap.  I can feel them and they are deep in my arm.  Really deep.  But I don’t feel hopeless anymore.  I know that I will get them one day.  My cords might be stubborn but so am I.

 

Did you have cording?

How long did it take for your cords to snap, if they did at all?

Do you have any magic tricks to make them disappear?

A photo taken of one of my cords. Please excuse my hairy armpits, lol! It was winter and I couldn’t be bothered.

Lymphedema and How It Has Changed My Life

It’s the side effect that’s barely mentioned.  A whisper in passing by the surgeon and radiation oncologist.  Spoken nonchalantly as if not talking about it means it won’t happen.  But many of us know that this is not the case.

Today it was announced that the U.S. Senate unanimously voted that March 6th will be World Lymphedema Day.  This landmark decision is the first step in bringing awareness to this awful condition.  I wanted to use this opportunity to not only tell you all about lymphedema but how it has impacted my life.

Lymphedema can happen to anyone who has lymph nodes removed during their mastectomy, a sentinel lymph node biopsy or radiation to the area.  I’m not even talking about those who are born with or develop the condition as part of a hereditary trait or those who get it as a result of another bodily trauma.

Lymphedema is the swelling of an extremity that occurs when lymph fluid is trapped and can not flow properly.  I got lymphedema in my right arm and hand about six months after my mastectomy with axillary lymph node dissection.

I asked my surgeon about lymphedema, concerned about the risks.  “Do you see anyone in the waiting room with a sleeve?  It’s extremely uncommon.”  She then handed me a pamphlet about lymphedema prevention and sent me on my merry way.

Let me say, I love my breast surgeon.  What she does, she does brilliantly.  She’s warm and caring and when it came to my cancer and mastectomy, she was knowledgeable and giving.  Her job was to get the cancer out of my body and she did that.  What she had to do to my body is not pretty, but that doesn’t matter.  Her job was to save my life and she did that.  But that’s not where the story ends for many of us, is it?

Getting lymphedema has been traumatizing in many ways, more so than the cancer itself. Cancer was something to be beaten or overcome.  With my cancer I could have a mastectomy, chemotherapy, radiation, herceptin and tamoxifen to help make sure it never comes back again (although even all of this is not a guarantee).  Lymphedema is for life.  It’s something I am going to have to manage.  At this time, there is no cure.

I’ll repeat that in all caps.

THERE IS NO CURE!!!!!!!

Knowing I had done everything I needed to do to save my life and many of these life saving measures have caused me to have a painful condition that I will have to live with for the rest of my life has been unbearable.  When it was first happening, I fell into a depression and cried all the time.

I couldn’t imagine how I was going to live my life with a limb that unpredictably swelled when I lifted my child, ate a salty meal or the weather went above 80 degrees.  I was afraid all of the time; afraid when I tried to imagine what my future might look like.  It was hard to imagine my future at all.

I felt ugly.  Like a teenager who’s uncomfortable in her developing body I began to hide my hand.  I’d fidget with my clothes so that they’d hide my swollen hand or how one sleeve was tighter on my arm than the other.  And feeling even more ugly than I already did after my mastectomy was a major blow to my self worth.  Sometimes, I wondered if life with lymphedema was worth living.  I never contemplated suicide or anything like that and I didn’t want to die.  But I wasn’t sure I wanted to live, either.

I kept a lot of these feelings to myself.  My husband, who knows how hard this has been on me doesn’t even know I was having these thoughts.  He’s going to flip the fuck out when he read this. (Don’t flip out, honey.  I’m ok, I promise.)

But that’s the problem with lymphedema.  Many people don’t know about it, not even doctors.  They don’t know how to talk to us about it and they don’t know how to help us prevent it from happening, although, sometimes it is unpreventable.  They also don’t know how to support us when and if it happens.  Like many medical conditions, we don’t need to simply treat the ailment but all of the mental and emotional baggage that comes with it.

That is where Cynthia Shechter comes in.  Cynthia is an amazing physical therapist who specializes in breast cancer care and lymphedema and she runs and owns Shechter Care here in NYC.  Before I met Cynthia, I was told that I would need to wear a compression sleeve every day for the rest of my life and go to sleep each night with my arm bandaged.  I told my previous PT that I couldn’t live like that.  Cynthia agreed.  Her goal is to find ways to manage my lymphedema and still be able to live my life comfortably.

Since meeting and working with Cynthia and her team, my lymphedema has improved.  Any time there is a flare-up, she doesn’t freak out.  She just says, “Oh, don’t worry about it.  We’ll get it back down.”  She means it and she does.  This has changed my whole perspective and outlook on life.  You see, now I don’t cry myself to sleep every night.  I don’t wonder if life is worth living.  I know it is and I can find a way to live happily with this condition.  Life will be hard and it won’t be perfect but there will be more joy and happiness than I thought I can have.  This is a huge gift.

Coming soon, I will have an interview with the amazing Cynthia Shechter about lymphedema.  I’m hoping that by bringing her expertise to my blog, many of your questions will be answered about lymphedema and care for women who have undergone breast cancer treatment.  With awareness and education, it is my hope that no one will have to feel hopeless like I did and will be able to advocate for their own care.  I can’t wait to introduce her to you all.

Did you develop lymphedema after breast cancer surgery and treatment?

How has your life changed as a result of lymphedema?

What is one thing you would like people to know about your lymphedema experience?

 

 

When To Give Up

As I’ve mentioned in the past, I have been dealing with axillary web syndrome (cording) and swelling, which is possibly lymphedema as a result of my breast cancer surgery and subsequent treatments (radiation, I’m looking at you here!).  I have been in physical therapy for several months now to try to help.  Unfortunately, there has been absolutely no relief with these side effects.  They have persisted and even gotten worse.

The swelling has not gone down and, in one part of my arm has even gotten worse.  The cords that I’ve had since the beginning are still there and won’t snap or dissolve.  Bandaging doesn’t help, it makes it worse and has even spurred new cords to form.  So does stretching, both by myself and manual (done by the therapist).  New ones have formed as recently as last week, in my thumb, down my wrist and into my arm.  This has been a source of extreme frustration for me and my physical therapist.  We are literally at a loss for why this is happening.  I am in some pain (I can still get on with my day) but the fact that this is getting worse again is scaring me.  I don’t know why this is happening and no one can help!!!!  Why does this happen?  Why won’t it go away?

Last week, my physical therapist, who I love and has been working hard to try to figure out how to make these “moody” (her words) cords go away, told me that she feels like she has done all that she can do and that we should bring our meetings to a close.  In light of the fact that things are getting worse, I was thrown for a loop.    She was leaving me to fend for myself.  I burst into tears.  I couldn’t believe that we would be ending things when nothing had been resolved.  She was giving up on me.  She was giving up, period.

She said that she didn’t want to stop but she felt that she has done all that she knows how to do.  I expressed my frustration at her decision.  How can we stop now?  What do I do next?  I can’t do this alone!

At this point I was sobbing.  I was scared.  Scared for my future.  Scared for the unknown of what life will look like without support for this problem.  I’m not sure but I think she was tearing up too.  It was not a great moment.

I think one of the things that struck me so deeply was that this is the first time in a full year of treatment that I’ve heard, “we’ve done everything we can do.”  That is a frightening statement to hear when you are dealing with cancer or any serious illness.  It’s scary when the experts decide to give up the fight when I still have fight left in me.  Then it becomes a game of persuasion, pleading for just a little more time.  A little more effort.

Hope is one of the only things we have when fighting cancer.  Without it, it’s hard to get through each day, each treatment, each setback.  And these can come in droves.  I may be pretty freakin’ knocked down lately but I haven’t given up the fight, not by a long shot.  I believe that there is a solution to this problem and we just haven’t figured it out yet.

Yesterday I met with my physical therapist again and she said that she emailed my doctor for guidance on what to do next.  So as of right now, physical therapy isn’t ending for sure.  But it might be.  Either way, I decided to go to another hospital for a second opinion.  I’m not sure that they’ll find anything new or try anything different.  There’s just not a lot of information out there about cording.  But I have to try.  I have to!  I have to be my own advocate.  I have to keep pushing to make sure I have as happy and pain free a life as possible.  Because I plan on living for a very, very long time.  I don’t plan on ever, ever giving up.

Axillary Web Syndrome/Cording

This morning I finally got an appointment with a physical therapist to find out what that pull in my arm is and what is causing the swelling.  I’ve been losing sleep, literally, because I was sure it was lymphedema.  Lymphedema is the swelling of the arms or legs.  It can occur after a mastectomy along with axillary lymph node dissection or a after a sentinal node biopsy.  Because I had cancer in two of my 12 lymph nodes, they were removed at the time of my mastectomy.  Getting lymphedema is a fear of mine because once you have it, you have it forever.  There is no cure, just maintenance.  I’m convinced that I already have a mild form of lymphedema in my right foot (it has always swelled up and doctors can’t explain why) so to have to deal with it in another extremity seemed just too overwhelming.

Part of the purpose of seeing this particular therapist was to get evaluated for lymphedema but when I asked the therapist what she thought she said, “Well, I can’t diagnose you.  A doctor needs to do that.”  Excuse me?  I found that really frustrating because I didn’t really get an answer but, here is what I learned.

I have been diagnosed with axillary web syndrome which is also known as cording.  Cording can occur in women who have had a mastectomy.  When you develop cording you can literally feel a cord underneath your skin.  Mine feels like a guitar string.  It is not a muscle.  According to the therapist, no one knows exactly what it is, why it happens or what to do about it.  It does have something to do with the lymphatic system (although I wrote to my surgeon who says it has to do with the tendons but I’ve read several articles that say differently).  Cords are painful and tight, like a pulled muscle and it restricts your range of motion.  For example, I have a hard time straightening my elbow or reaching too far right now.

Here cording is shown in the upper arm area.

There isn’t a lot of research on axillary web syndrome but I found this case study and this one when doing my research.  The first one was published in 2009 and the second in 2007 so, I don’t know what information is still current.  This is what was said about axillary web syndrome in the second article, Treatment of Axillary Web Syndrome: A Case Report Using Manual Techniques.  “The surgeon postulated that when lymph nodes are removed, the adjacent lymph vessels, which are now non-functional, become fibrosed. They can attach to the axilla or chest via scar tissue. These hardened lymph vessels become apparent when the patient lifts her arm and stretches the tissue. Inflexibility in the lymph vessel can lead to significant pain and avoidance of movement. Adaptive postures can then lead to a loss of arm range of motion.”

Treatment, for now will include weekly appointments with the physical therapist.  I have two stretches to do, twice a day.  I will be learning lymphatic massage to help reduce swelling.

As for the question of lymphedema, the therapist says there is cause for concern when one arm is 2 centimeters or more larger than the opposite arm.  There is definite swelling in my right arm, which I knew about.  In one area it is exactly 2 centimeters bigger than my other arm.  However, we don’t know what size my arm was before I developed this problem so it’s very possible that there is a difference in size between my two arms to begin with.  Also, cording can cause swelling in the affected area.

I left the office today with some answers, which is really good and can be dealt with but I haven’t been given full reassurance that I do not have lymphedema.  I am also confused and frustrated by the fact that measuring the arm is not part of standard care before and after a mastectomy.  If developing side effects such as cording or lymphedema is possible, shouldn’t we have a baseline in order to properly diagnose?

Has anyone else dealt with axillary web syndrome?  What was your experience?  How can we let our surgeons know that preemptive screening can be helpful for future diagnosis?

Check out this article for more information on cording.  I found the information very useful.  This video was useful as well.

Mommy Mondays: No Bones

We all know what toddlers are like.  When the are good, they are wonderful.  But when they are bad…watch out!!!  Oliver is much of the same.

When he is have a good day (or good moment), it is amazing.  He will joke around, sing, dance, laugh, play, try out a new sentence, sing his abc’s, talk about trains and more.  But that can switch on a dime.  Lately, when Oliver is throwing a temper tantrum or gets upset, he will drop down on the floor and lay there completely limp.  The goal, on his end, is to ensure that picking him up is as physically difficult as possible.  And it is.  Because I don’t have a normal 2 year old.  I have a 38 inch, 34 pound 2 year old (that’s the size of an average 3 1/2 – 4 year old)!

Initiating “no bones” sequence.

Beginning public tantrum by rolling around and screaming.

Screaming bloody murder as if I was the worst mother ever because I took him to the National Air and Space Museum and showed him the inside of an airplane. GASP!

Dealing with these things is hard under normal circumstances.  We’ve all seen it and if you have children, you know from experience.  But dealing with the tantrums while weakened by chemotherapy is a whole different ball game.  We don’t just deal with the “no bones” tantrums.  We also have the hitting, kicking, thrashing tantrums.  And because I’m still Oliver’s primary caregiver, I deal with most of these.

I don’t know when it happened but about three weeks ago I had a pull in my arm on the side where I had my mastectomy.  I can’t pinpoint exactly when I pulled it but I can bet you anything it was when I was dealing with Oliver.  Even if it wasn’t, every time I had to pick him up off the floor, hold him while he was angry or frustrated or lift him in his crib for a time out, it would make the pull worse.  As a result, I couldn’t stretch my arm all the way up, normal daily activities were painful and lifting Oliver was a challenge.

I’m on the mend now but because the injury was on the side of my surgery, I now have to go for a physical therapy consult.  For.  Real.  This is not a terrible thing but I already have no time in my schedule.  Between work, raising Oliver and treatment, I have nothing left.  But I have to do this.  So I can keep lifting Oliver, no matter what his mood is.

Why does everything have to suck?