My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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1, 2, 3, Attack

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It happened at the gym a couple of months ago.  Earlier that day, I read about another young mother who had lost her life to metastatic breast cancer.  I followed her on Facebook and commented on her posts often.  I’m not sure she knew who I was but through her posts I felt I knew a bit about her and her life so the loss hit me hard.  And to see any child left without his or her mother just devastates me.

On that same day, the news was replaying a story of a young woman who lost her life to colon cancer (I think), but not before fulfilling a lifelong dream of being a contestant on Jeopardy.  I saw the headlines on my Facebook feed but didn’t really pay attention to it.

At the gym, I was doing my normal treadmill routine.  Running, walking, sprinting, walking….  I was doing fine, listening to music and watching the news silently on the screen in front of me.  I started one of my final sprints of the workout and on the news was the story of the young woman who died who had appeared on Jeopardy.  Suddenly, and seemingly out of nowhere, I broke down in tears.  I could not stop crying.  I had to hit the emergency stop because I couldn’t run anymore.  I was done.

The next time I went to the gym, the moment my heart rate went up, I started to get short of breath.  My heart began to flutter.  I felt weak and light headed.  It paralyzed me.  I tried to push through and I couldn’t.  I walked away from the workout.

The next few times I went to the gym, the same thing happened.  The moment I increased the difficulty of my workout, my body would shut down.

I mentioned this to my therapist and she said I was having a panic attack.  She advised that I alter my workout, either by going on a different machine or slowly working up to a more vigorous workout on the treadmill.  If I felt the attack coming on, to not stop but to slow down.

Her advice worked the first time.  I haven’t had an attack since.  But it shocked me that this happened.  I thought I was doing so well at managing my anxiety.  I guess the fear and anxiety of cancer is always there.  It might be dormant for a while but the monster could always be woken.

Has anything like this happened to you?

Did you start getting panic attacks after you got cancer?

 

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Acquainted With The Night

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BY ROBERT FROST

I have been one acquainted with the night.

I have walked out in rain — and back in rain.

I have outwalked the furthest city light.

 

I have looked down the saddest city lane.

I have passed by the watchman on his beat

And dropped my eyes, unwilling to explain.

 

I have stood still and stopped the sound of feet

When far away an interrupted cry

Came over houses from another street,

 

But not to call me back or say good-bye;

And further still at an unearthly height,

A luminary clock against the sky

 

Proclaimed the time was neither wrong nor right.

I have been one acquainted with the night.    


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Lymphedema and How It Has Changed My Life

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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?

 

 


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Fear Of The Unknown

 

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We all know what it feels like.  That feeling that there’s a secret that’s lurking in our bodies.  That dread that what can’t be seen or felt or known is hiding inside of us.  It’s inescapable.  The fear of the unknown.

I went for my three month checkup with my oncologist last week.  This was the longest separation I had experienced from her since the year and half I was diagnosed.   It was a routine appointment without incident.  I had questions about some side effects of the new medication I would be starting.  But my last question was about recurrence.

“How will I know if it comes back before I’m symptomatic?”  I asked because at my cancer center, they do not do blood tests for cancer markers.

Her answer was, “Well, we won’t know until you show symptoms like a cough without a cold or a persistent headache that won’t go away.  Then we’ll do some tests.”  And that’s it.  That’s all they can do.

I understand and even agree with the reason why they don’t do blood tests for cancer markers at my hospital.  My oncologist said that it hasn’t been the recommendation since 2006 and she and the hospital fully support that recommendation.  She said that this test creates too many false positives.  False positives result in testing which contain radiation.  Why would we want to subject our bodies to more radiation than is necessary?  Then, if there’s a false positive and we don’t see anything, we have to test again to see if anything changes in the next few months.  Then, how are we spending the next few months?  We are spending it filled with anxiety and fear over what might be happening in our bodies.  And that’s no way to live.

“But what if something is growing?  Don’t we want to know about it sooner rather than later,” I asked?

“It doesn’t matter if we catch it when it is small or when it has caused symptoms.  We don’t treat any differently.  You get the same treatment.  And early detection at stage four has not shown to affect or alter the length of survival,” she informed me.

So, what that means is, I could have a small dot in my brain and if we catch it early, we could treat it and I could die in a year. Or not.  But if we catch later, I’d get the same treatment and I could still die in a year.  Or not.

I spoke to my therapist about this recently.  I described it as like having a piano hanging over my head ready to plummet at any time.  It may never drop or it might snap after the slightest breeze.  Anything can happen.  We can never predict or know for sure.

And that’s terrifying.

But this is it.  This is how I live the rest of my life.  This is the gift that cancer has presented me.  A life of uncertainty.  I fear not knowing what is happening in my body.  The fear of not knowing what the next day will bring.  Because I understand that life can change in an instant. So I live afraid.  I live fearing the unknown.

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Head Bowed, Heart Heavy

“It doesn’t escape me for one moment that so much joy in my life is thanks to so much pain in someone else’s. ” -Lupita Nyong’o in her Oscar speech

There are some days when something happens that snaps you back to reality.  A chance meeting with someone that lets you know how good you have it.  A story in the newspaper that reminds you that you are loved and have others to go home to tightly hold.  On Thursday I had one of those days.  Boy, did I have one of those days.

If you haven’t noticed from my posts in the last few months, I have been in a survivorship slump.  People often think that when treatment is over, life goes back to normal but I have been dealing with anxiety and depression due to what I have experienced over the last year and also from the side effects that I have.

I was in the waiting room this past Thursday morning to see my therapist.  While I was waiting, I needed to use the restroom.  Both were occupied but quickly one of the doors unlocked and I noticed something was banging against it.  My therapist is in the ambulatory care hospital so it’s common to see people with canes, walkers, wheelchairs and in stretchers.  I went over to the door and offered my help.  The man accepted.  He was in a wheelchair and thanked me for opening the door.  “It is so hard.  It is so hard,” he said to me.  “It looks like it’s really hard.  I can’t believe they don’t have a button for people in wheelchairs to press that automatically opens the door!  It’s ridiculous!”  He agreed and began to tell me his story.  He is a stroke victim and this has caused him to lose a good deal of his mobility on his left side.  Then after his stroke he got hit by a car and lost his right arm.  The only extremity that works as it should is his right leg.

We talked for a good ten minutes.  He really needed for someone to hear his story.  I was humbled that he trusted a stranger like me with his life’s tragedies.  “If I want to wear jeans, I have to leave an extra hour to get ready because I can’t zip and button the pants.”  “I don’t have a home care attendant anymore.  No one comes to help and take care of me.”  “I’m working hard.  I can’t do much but God has spared me.  But I try.  Do you want to see me walk?”  And up he stood, walking carefully close to the wall to brace himself.

I don’t know how in the face of such challenges he can remain so positive.  My challenges in comparison are small, they are real but small, and it has plunged me into depression.  I live every day in fear of my future.  And uncertain of it.  But his eyes were bright and hopeful.  He was going to walk again and be free of that chair.  That he promised me.

Right after that I took my seat in the waiting room again.  I opened facebook to pass the time until my therapist came out.  And just as she did and said hello, I saw some terrible news.  A cousin of mine, who I don’t really know but who I recently connected with on facebook died in a car crash.  He married his beautiful wife just three days before.  They were on their honeymoon and for some reason he swerved his SUV out of his lane and hit a bus.  I found this news to be devastating.  Again, I barely knew him but it’s funny how social media makes you feel closer to someone than you actually are.  I watched in photographs as he made a beautiful box for his then girlfriend in which to put the ring that he proposed to her with, and as he excitedly prepared for his wedding, their beautiful wedding day and pictures from their honeymoon that were posted in real time.

You know when you see something or read something and it’s so shocking that it makes no sense?  This was one of those things.  And upon understanding and clarity there is fear, sadness and that feeling in your gut and hands that make you sick with confusion of life’s uncertainties.

Not long after this, there was the shooting on a college campus in Oregon where a shooter entered a classroom and killed ten people.  Another national tragedy at the hands of a person with a gun.  Ten families were changed forever.  Ten families were whole just a few hours before and now they aren’t.

I just wanted to go home and crawl under my bed and hide from this day.  At the same time I just wanted to hold my family tight and be grateful for their lives and my own.

Why does it take tragedies like this to be reminded that we have so many good things in our life?  Even though we struggle, there is so much to be grateful for.  I hate that it has to happen this way.  That my joy and my gratitude are because of the pain and suffering of others.  But grateful I am.