My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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2 Year Cancerversary

It was two years ago that I walked into a breast surgeon’s office to have a lump in my right breast checked out.  I remember telling myself “It’s just a blocked milk duct.  You just finished breastfeeding.  They’re going to tell you it’s nothing.  You’re going to be fine.”  Your mind tells you one thing.  Your soul tells you the truth and prepares you for what is coming.  I remember the nurse or the resident or whoever she was looking at my sonogram.  Her face didn’t change.  It didn’t budge.  Her pupils did.  I remember them narrowing with knowledge.  “I’m sure it’s just a blocked duct,” she said.  “But I’m going to get the doctor.”

The doctor came in and looked for himself.  He wasn’t quite as adept at hiding what he was seeing.  He was all business.  After a quick look, he told me that he’d like to do 4 biopsies.  One for each lump he saw and two for my lymph nodes.  WHAT?????!!!!!!?????  My lymph nodes?  Why they hell would he want to check those?  The lump is in my breast!  There was so much I was about to learn.

I remember crying hysterically as he did those biopsies.  I couldn’t believe what was happening.  My life was changing and there I was, being punctured over and over again.  Once it was over he asked, “Do you have to be anywhere?  Can you stay for a mammogram?”  He called in a favor downstairs, asking if I could be seen right away, even though it was the end of the day.  He let me know that he’d have the results of some of my biopsies the next day, “just in time to ruin your weekend.”  He asked me to come back and to make sure someone was watching my son.  He then walked me down to get my mammogram.

The next day in his office, he said, “Well, it is cancer” as if we all knew it already and it was no big thing.  But it was a big thing.  It was a huge thing.  That day, my life changed forever.

That was two years ago but it feels like yesterday.  Time has gone so quickly yet so slowly.  It’s hard to explain.

At my one year cancerversary last year, I was still reeling from the trauma I had experiences both mentally and physically.  In my post commemorating the date, I chose to thank all of the people who helped me get through what was the worst year of my life.  I am still grateful to all of those people.

But this year is the year where I have tried to get back to living my life.  I have accomplished so much.  This year, I finished my weekly Herceptin treatments.  They didn’t really cause any side effects but they kept me going to the hospital every three weeks.  It’s hard to move on when you are constantly going to these appointments in the hospital but it kept me close to Nina, my chemo nurse who I always love to see.

Even though my lymphedema progressed into a non-reversible stage, I advocated for the kind of care I wanted.  I left NYU Rusk for physical therapy and found the amazing Cynthia Shechter at Shechtercare who is helping me learn to manage this condition.  It reminded me to trust my instincts and to never settle for sub-par quality of care.

I went back to work full time.  It was exhausting.  I still experience harsh fatigue and my body was still weak.  I also still have some lingering chemo brain.  It’s not horrible but I still forget to do things and can’t remember people’s names.  But I love my work and am glad that I can continue to do what I love to do.

I’ve tried to be a great mother to Oliver.  Many would say I accomplished that.  Being my own worst critic, I can think of a million things I did wrong or about all of the projects I didn’t get to do with him or all the places I wanted to take him, but there was never time.  But, he’s also so bright, funny and caring.  He did so well in his first year in school and grew so much.  I think I should take even just a little bit of credit for that.

This year has also been extremely challenging.  I had my DIEP Flap surgery.  I was warned that it was difficult to recover from but I didn’t quite believe it.  I should have listened.  I’ve never experienced that kind of pain before in my life.  I also underestimated how long it would take for me to recover.  Even though I went back to work after 6 weeks, I still feel like my body is healing.  I’m also still not used to the scars and dissatisfied with the results.  I know that it is a work in progress but, no matter what the plastic surgeon does, I will still be unhappy with the massive scarring on my body.  I just can’t get past it.

Emotionally, moving past cancer has been hard.  The good news is that I don’t cry every day anymore.  Up until about six months ago, I cried every day since my diagnosis.  That’s a lot of crying.  A lot of trauma.  I still think about cancer every day, several times a day but the thoughts and emotions are no longer paralyzing.

Cancer has made me feel stuck in life.  Right before I was diagnosed, I was starting to think about the next steps in my career.  I had to put that on hold, of course.  Now, I have no idea what I want.  I’m trying to work through all of this with a therapist but I’m having trouble moving on.  I’m still mourning and I’m trying to understand what this new normal is.

They say that each year, dealing with the aftermath of cancer gets easier and easier.  That one day, I won’t think about it all the time.  It will be a distant memory.  At two years post diagnosis, I don’t find this to be true.  I have my life and I’m so grateful to be able to do many of the things I love but I’m having trouble moving on.  It’s all still so raw.  I’m still so bitter an angry.  It doesn’t feel good.

I’m going to try to keep busy all day tomorrow.  Hopefully I won’t think too much about the significance of tomorrow’s date.  My hope for myself is that I find as much joy as possible.  Maybe I should do something nice for myself.  Get a mani/pedi or take a long walk and window shop.  I don’t know.  But what I do know is that I need to start turning this frown upside down.  I need more joy.  More life.  Or why did I fight so hard?

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Zoladex: The Ovarian Suppressor and It’s Side Effects

Last week I received my third monthly injection of Zoladex.  Since I am on a two year regimen (for now, the new recommendation is five years), I only have 21 injections to go!!!  Yay!

Zoladex, or Goselerin, is similar to a hormone made in the body, LHRH (luteinizing hormone, releasing hormone).  It’s purpose in women is to decrease the production of estrogen so that it can stop the growth of ER+ cancer cells.  The medication is an implant which is injected by a large needle into the abdomen just below the naval.  The medication is released in the body over the period of a month.

This drug has done well in clinical trials with pre-menopausal women, particularly under the age of 35 (but, according to my oncologist, it is now recommended for all pre-menopausal women with ER+ breast cancer) in conjunction with Tamoxifen.  This added protection against recurrence is a great thing, but great things in cancerland rarely come free.  Side effects can include: hot flashes, dizziness, headache, sweating, trouble sleeping, nausea, mood changes, and vaginal dryness.  Sound like fun?  What cancer treatment isn’t?

So far, I have been experiencing intense hot flashes, sweating and fatigue.  Maybe a little moodiness but that can be from being so freaking tired all the time.  Who knows?  The hot flashes are awful.  It feels like I am a radiator, and when a hot flash starts, I’m being heating up from the inside out, until I am burning hot all over.  My face turns really red when it happens.  I’ve had several people apologize to me during a hot flash, asking how they’ve embarrassed me!!!!  Now, that’s embarrassing.  And the worst thing about a hot flash is that there’s nothing you can do to stop it.  It’s like being on a rollercoaster and going down hill.  You just have to get through it.  There’s no stopping it once it starts.  There’s no stopping it before it starts.  It’s a constant ride but I never know where and when it’s going to begin.  It’s awful.

devil

This is what a hot flash feels like.

The shot itself, well, is way more than a shot, really.  One person on my Facebook page  described it as a “harpoon.”  I think if you tried to look it up, you could find what the needle looks like but I can’t bare to know.  I think if I ever saw the needle, I’d never get it again.  The injection doesn’t hurt me.  I’m still pretty numb from my DIEP flap so, that’s good, I guess.  It must hurt others because the nurses always cringe when they have to give it to me.  You know it’s a huge fucking needle when even the nurses, whose job it is to stick you with needles all day, recoil at the thought of giving this injection.  And while I haven’t seen the needle itself, I have seen the size of the box.  It’s huge!!!!

I spoke to my oncologist about my side effects.  She wants me to start acupuncture to help with the hot flashes.  I like this alternative idea to medicine to help with my symptoms.  I don’t like that I have to find yet more time and money to manage my side effects.  With the lymphedema, depression, anxiety and now hot flashes, managing my symptoms is becoming another job.  A very expensive job.  Ugh!!!!!!

Cancer.  The gift that keeps on giving.  Were truer words ever spoken?

Are you on Zoladex?  What side effects are you experiencing?

Have you tried to manage your symptoms with acupuncture?  If so, how is it working for you?


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Getting Into The Spring Of Things

There’s nothing like starting to exercise again after a long hiatus to make you feel like a total and utter failure.  In your mind, you can sprint for miles while in reality, your body will only take you to the next tree, or car, or lamppost.  It’s discouraging to say the very least.

I know that I should be forgiving and kind to myself.  Not that long ago I underwent a huge surgery and this is after 6 months of chemo and radiation.  That’s not a small thing.  And the recovery from this particular surgery, the DIEP Flap, was especially rigorous and intense.  I couldn’t move for weeks.  Exercise was out of the question.  I mostly lay on my couch and binge watched Scandal, The Good Wife and How To Get Away With Murder.

I did all of this without caring much for what I was putting into my body.  I didn’t go crazy or anything but I certainly didn’t measure the amount of ice cream that I was ingesting.  Well, I guess I could measure it but in pints rather than small measuring cups.  I did try to eat a balanced diet with lots of veggies, though.  But when you’re not moving it doesn’t matter so much.  Between being a couch potato and the side effects of the tamoxifen, I have gained a little weight and I’m really unhappy about it.

Getting out and exercising is really hard.  For starters, between work and raising my son, I don’t have a lot of time left over to exercise.  I would love to take a class but my husband works long hours so he’s not home in time for me to get to a class.  I also don’t know what kind of exercise I can do without hurting myself.  The last time I tried to exercise in a slightly vigorous way was during chemo.  I put on The 30 Day Shred on my dvd player and somehow, despite low hemoglobin counts, got through the video.  But it wasn’t long after that my cording and lymphedema developed.  I’m positive that this vigorous exercise is what triggered the issues.  I was told by doctors to exercise.  I was told to take it easy.  So I modified the pushups and did some of the exercises with light or no weights.  But that wasn’t careful enough.

I didn’t have any guidance when it came to how I should exercise.  When I am told to take it slow or easy, what does that look like?  When can I get back to the things I love to do, like boxing?  I love the idea of punching something but I can just imagine swinging my right arm out for a hard jab and feeling that awful pull of the cord that begins in my breast and goes all the way down into the pit of my arm and to the webs of my hands.  I don’t need more cords and I don’t need my lymphedema to worsen.

So, that leaves me with running.  I hate running.  No.  You don’t understand me.  I HATE RUNNING!!!!!  But, my husband loves running.  He loves it so much that he runs half and full marathons.  He makes me come out and watch him.  He talks about running constantly.  CONSTANTLY!!!!!  If you know and love a runner, I know you know what I’m talking about. A runner has a myopic view of life…running is great and everybody should love it.  They can not, in their egocentric state, imagine how one can not love running.  They live for the euphoria that comes from pushing through the pain.

Me?  I never hit that euphoria.  My endorphins don’t kick in.  They never have after a run or workout.  In fact, it’s the opposite.  I get pissed of when I run.  Like, really angry!  I curse, I cry, I hate it.  Does this happen to anyone else?

But here’s what I do love.  I love being outside.  I love watching all of the people in the park with their babies, children, friends….I love seeing the trees bloom in the spring and the leaves turn bright oranges and yellows in the fall.  I love it more than I can express.

Today, I went out and ran for the second time since my surgery.  It was awful.  I barely made it through.  But as I huffed and puffed through Prospect Park, I noticed some of the trees were pink with flowers that must have just bloomed.

It’s spring.  It’s time for a fresh start.  It’s time for things to begin their cycle toward life and beauty again.  Some of the trees are still bare, with not a bud in sight.  They are lagging behind.  I know how they feel.  But inevitably, in their own time, they too will bud and grow leaves.  If all of these things in nature can grow and have their fresh start, why can’t I?  So I will go out again soon.  I will do my best.  I will try to be kind and loving to myself.  Even when I’m running.IMG_5586IMG_5587


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What Lies Beneath

“In an art form that deliberately conceals the enormity of effort that goes into its creation, we are not meant to see behind the curtain.  But I think that this does a great disservice to the dancers, and that having a sense of what lies beneath both enhances our experience of the performance and leads to a more profound appreciation of the dancer’s essential being.” -Rick Guest, photographer

Ballet-dancers-51__700

The thing I admire most about ballet dancers are their ability to make the super human look effortless.  The leaps, the spins, the balancing on toes from movement to movement…it’s as if their bodies are being carried by the wind.  Or their spines are jelly rather than bone.  Their legs are pulled up straight by a string controlled by an invisible puppeteer.  But what is not often known to, or considered by the audience are the hours upon hours of grueling rehearsal.  We don’t see the bruises or see the winces from the sore muscles.  We never see the sweat wiped from faces and chests backstage between entrances and exits.  We never see the blistered or broken toes that are hidden by the delicate, pale pink pointe shoes.

It is the job of the dancer to dance through and in spite of the pain.  Just like an athlete who must still get a goal, a touchdown, or land solidly, without faltering from the uneven parallel bars despite sprained and broken bones.  The show must always go on and it is the job of the artist to hide the hard work and the pain beneath the costume.

After six weeks of taking a medical leave of absence to recover from my DIEP Flap reconstruction surgery, I will be going back to work.  While I love my job and can’t wait to see my students again, I’m feeling trepidatious about getting back to normal life.  I have recovered well, without much incident, but I feel like I’m still recovering.  I can get around and move normally if I’m careful but I don’t have the same energy or endurance as I did before my surgery.  I get really tired in the middle of the day and find it hard to focus or get my energy back without resting.  Each week I experience dramatic improvements and I have every reason to believe that within the next few weeks my engery and endurance will return.But for now, I feel like I have to hide what I feel.

I am always saying, “fake it ’til you make it.”  I say it to students who tell me that their too tired to get up from their seats to play a game or perform a scene.  I tell them that if they fake having energy, that soon they really will be energized.  It’s mind over matter.  If you put on a smile, eventually, you will feel happier than you did a few minutes ago.

I did this throughout chemo and radiation.  I had to hide my fatigue under the costume of smiles and exuberance.  It ended up working for me.  And now I need to do it again.  I must put on my costume and conceal the awful scars that lie beneath; the scar from hip bone to hip bone, that show all of the hard work and healing I have had to endure these last six weeks.  My students don’t care if I was cut in half on January 8th.  And they shouldn’t care.  I’m there to do a job and the show must always go on.

So, on Monday, the alarm clock will go off.  I’ll groan and complain as I walk to my shower.  But by the time I get off the train and walk into school, I’ll have a smile on my face.  I will teach effortlessly, with grace.  No one will see the work it’s taking for me to keep going.  And maybe I’ll get so lost in the moments, the laughter and stories, that I’ll forget for a little while myself.  No one will see what lies beneath.


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When Is Enough, Enough?

AAN3PY 1950 1950s WOMAN SITTING IN FRONT OF FAN WIPING FOREHEAD VERY HOT

AAN3PY 1950 1950s WOMAN SITTING IN FRONT OF FAN WIPING FOREHEAD VERY HOT

I thought I’ve done it all.  Said yes to everything I could possibly agree to.  That there was nothing left to do.  I’d done my job and now I get to live a cancer free life.  But no.  It’s not that easy.

Three weeks ago, I met my new oncologist, Dr. Marlene Meyers at NYU.  She’s wonderful, caring and open to listening to me and my needs.  But, she suggested that, in addition to the Tamoxifen I’m taking, I also start on a regimen of Zoladex.

Zoladex, a form of hormone therapy is an ovarian suppressor.  The drug stops the ovaries from producing estrogen or as some doctors call it, “medical ovarian shutdown”, and can be used by women with ER+ breast cancer who are pre-menopausal.   It is given as a monthly injection.  So, what is the difference between Tamoxifen, and aromatase inhibitor and and ovarian suppressor?

Tamoxifen is a type of hormone therapy known as a SERM (selective oestrogen receptor modulator) and its job is to block the effect that estrogen has on tissue receptors.  Aromatase inhibitors reduces hormone levels but does not block estrogen from being produced by the ovaries.  Because of this, aromatase inhibitors will only work on women who are post-menopausal or who have had ovaries removed.  Zoladex literally shuts the ovaries down so that they are unable to produce estrogen.  The only other way to prevent the ovaries from doing this would be to remove them altogether.

While Zoladex, in addition to Tamoxifen (according to my oncologist) prevents recurrence by only a few statistical points, she said that it did very well in trials for women age 35 and younger with ER+ and node negative tumors.  While I do not “have to” take this drug, she is strongly recommending it.

I have done some basic research, and maybe I’m not finding the latest papers that have been released but, according to the results of the ZIPP trial, “although the effect of goserelin was smaller (and not statistically significant) among women who took tamoxifen, a difference in risk of 2-3 percentage points in absolute risk at 15 years might be important, given the high incidence of early breast cancer. This would correspond to treating 33-50 women with tamoxifen and goserelin to avoid one woman having a recurrence, new tumor, or death. Indeed, the number needed to treat at 15 years was 18 in women younger than 40 years who also took tamoxifen.”

As I think I have mentioned before, my aunt Vickie works in medical publishing so she has been asking around for second opinions for me.  One has come back so far stating that she is in agreement with my oncologist and that Zoladex would be beneficial for me.

So here’s the thing.  When I started on Tamoxifen, the side effects were pretty harsh: terrible night sweats (I’d wake up several times during the night completely soaked through.  My side of the bed felt like an overactive heating pad), constant insomnia (I was a walking zombie, with the moodiness to match) and hot flashes, which I still suffer from on a daily basis.  I am terrified by the side effects that will be accompanied by Zoladex.  While they are not permanent, because the injection is given monthly, I would have to live with any negative effects for at least a month.  This could mean more night sweats, more insomnia, more hot flashes, loss of sex drive (what sex drive?)…this doesn’t include the osteoporosis, bone pain and depression.

This all sounds awful and it might be (it also might not be that bad) but there is also the psychological issues that have come with receiving this information.  I was once again thrown for a loop with information I was not expecting.  I knew I was going to have to take Tamoxifen for 10 years but now I need to (should) be on yet something else?  When does it end?  When is enough, enough?  When can I say, “I’ve done six months of chemotherapy, fifteen sessions of radiation, a year of herceptin and 10 years of Tamoxifen, changed my diet, got back into exercising…and that’s enough!!!!”  I will never get to say that because there is always more.  More.  More.  More!!!  And I’m done!  I don’t want to do anymore!!!

But…I swore on day one that I would do everything in my power to make sure that I beat this thing.  What if I decided not to take the Zoladex and the cancer returns?  Will I always wonder if I had just done one more thing, if that would have been the thing that saved me?  Am I willing to do this, suffer all of the side effects to ensure I will be here to watch Oliver have his own children?  Isn’t that the definition of a mother?  To do anything and everything necessary, to sacrifice the self for her child?

These are the questions I’ve been battling lately.  There is no right answer.  There is no good answer.  I just need to choose.  Have I done enough?  Can I do more?

Have you been offered a treatment that you weren’t sure you were going to take part in?  What was the struggle for you?