What Defines Me

I was riding in my car this morning, listening to WNYC, and a commercial for Memorial Sloan Kettering Cancer Center came on.  It was talking about survivorship.  I can’t remember the exact words of the commercial suddenly (chemo brain!) but it was something like, “After cancer, people call you a survivor.  But after cancer, at Memorial Sloan Kettering, we want you to do more than survive.  We want you to live.”  On the Staten Island Expressway, 10 minutes from the school I would be teaching in, I started to cry.

Recently, I have been thinking about my life post cancer.  It’s been a year since I’ve finished major treatment and although my trips to the cancer center are less frequent, I still feel like it’s a major part of my life.  I remember after being diagnosed that I was told that I would have “a bad year.”  I don’t know if I was told the next part or if it was something I assumed but, I thought my doctors told me that after the bad year, my life would go back to normal.  My hair would grow back and look super cute with short styles.  My energy would be back.  I’d feel good and I’d be cancer free.

What a load of bullshit!

While the side effects of past and current treatments are awful, it is the emotional toll of the experience that is now hard to live with.  When I started this blog, I wrote in my “About Me” page that I wouldn’t let cancer define me.  I meant it, too.  Just two weeks into my diagnosis, I’d bought into the idea that cancer was not permanent and that while it sucked in the present, it was something to be overcome.  And when I did kick cancer’s ass, I could continue with life as usual.  Cancer was like a “Breaking News” interruption of my favorite program; it was annoying and I wanted to get back to my regularly scheduled programming (my regular life) but I had to get through the necessary detour.  That is what I was promised.  That is what was sold to me.  So when I said that I would not let cancer define me, I meant it.

Oh, naive, Carrie!!!!!  If you only knew then what you know now.  If you only understood the damage cancer treatment can do.  If you only understood what was in store.

Cancer completely defines me.  I think about it all the time; with every hot flash, every time I see my scars, every swollen sensation in my ugly ass lymphedema arm, every time I see the new curly, dry hair (previously wavy and shiny) that I can’t control, every time I put on mascara (I never needed it before), every time I eat (is what I’m eating a good choice?  Will it stop my cancer from coming back?  Is it feeding my cancer?), every time I work out and my body feels like hell, every back pain, every disappointing moment and even in every moment of joy.  Cancer is always there.

Cancer is a part of almost every conversation I have.  No matter the topic, it always comes up.  I think to myself as I talk to people, “Just don’t mention it!!!  No one wants to hear about it!  They’re all sick of it.  Stop talking about it!  Stop! Stop!  Shut the fuck up!!!!!!”  But I can’t help myself.  Everything for me comes back to cancer.

It is who I am.  It is so much of what defines me, I often don’t remember the person I was before.  This leaves me with the particular conundrum of having to redefine my life.  I’m suddenly in the position where what I thought I wanted, I either don’t want anymore, am not sure if I want anymore or if I can make it work in my post cancer life.  The things that brought me joy before cancer don’t bring the same amount of contentment.  I feel like I should now do great things with this second chance I have been given but, what is this new goal that I must surmount?  What must I achieve to make my life meaningful again?

I believe that in our lives, experiences can change us and make us analyze our current lifestyle and goals.  We should redefine ourselves.  We should always be growing.  But when the impetus for change is something so violent, invasive, and permanent…that redefining can be overwhelming.

I’m trying to get to know myself again.  I want to know who I am and what I will become.  But right now, the old me is holding the new me back.  She doesn’t want to let go.  She doesn’t want the cancer, or, more accurately, the experience of cancer, to win.  But it’s who I am now.  It’s everywhere!  Even in my morning commute.

 

Bits Of Happiness #33

Today was one of those magical days when everything is just perfect.  I love days like today because I get to feel pure joy again.  I’m in such a rut so much of the time I wonder how I’ll ever dig myself out.  But then there is so much laughter, so much that is new, so much wonder and discovery that I remember what life is all about.

We started the day by leaving our house nice and early to watch Ken run the Brooklyn Half Marathon.  This was his sixth year running and it’s his favorite race.  It starts off in Prospect Park, goes down the beautiful, street lined Ocean Parkway and ends in the iconic Coney Island.  We don’t live far from Ocean Parkway so our first stop to see Ken was there, which was about mile 7.  We made him a special sign which all of the runners loved.  I asked Oliver how fast he thought his daddy was and, in his true subway obsessed style he answered, “Daddy is as fast as a Coney Island bound F express train.  The next stop is Coney Island!  Stand clear of the closing doors, please.  Ding-dong!”

Since the race ends at Coney Island, it’s tradition to get Nathan’s hot dogs when the race is done.  Hot dogs for breakfast?  Yes, please!!!!!!

After eating hot dogs, we went onto the boardwalk to watch some of the race.  They had cheerleaders, stilt walkers and, of course, the amazing view of the rides at Coney Island.

Even thought it was an overcast and chilly day, we made our way off the boardwalk and onto the beach to chase the waves.  They caught us but that’s why we pack a change of clothes, right?

Once we finished chasing the waves, we realized that the amusement parks were starting to open.  Last year Oliver was too afraid to do any of the rides, even the carousel, but this year he ran into the park pointing at all of the rides he wanted to try.  And he tried them all.  I couldn’t believe it!  It was so amazing to watch him experience the thrill of the hills of a rollercoaster, or the whip of the fast turn of a car or the spin of the Tilt-A-Whirl!  He couldn’t stop laughing and smiling.  Neither could I.

As we were going through this day and laughing and loving each other, I thought to myself, “This is why I do what I do.  This is why I go through the constant shit of treatment.  It’s for these days.  These moments.  These memories.”

Today was a wonderful day.

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.

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!!!!

The Zoladex Box in comparison to a tissue box.

The Zoladex box in comparison to a telephone.

The Zoladex box in comparison to me.

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?

Bits of Happiness #28, #29, #30, #31, #32

I’m super behind on my Bits of Happiness posts.  I have had wonderful things in my life that have brought me joy each week.  I’ve just been too busy with work and life.  So, I’m going to update a few things.  I’m sure I’m missing tons and tons.

#28

Tulips!!! Tulips are my favorite flower and they’re everywhere in Brooklyn  right now.  My son even knows them and loves to point them out whenever he sees them and drags me over to see it.  It’s so sweet.  What a magnificent flower!

#29

Cherry Blossoms!  We missed the Cherry Blossom Festival this year due to the crappy weather but Oliver and I got to visit them together the day before.  We don’t have too many great pictures because it was just the two of us but they were lovely.

#30

Beautiful Brooklyn Streets.  I love walking around my neighborhood and watching the flowers gently fall off the trees and the leaves start to bloom.

#31

Exploring My City With Oliver!  I took Oliver to Battery Park for the first time since he was a little baby.  We had such a great time exploring the wonderful gardens, looking at all of the boats and the fire boat that was spewing red, white and blue water.  It was an overcast day but we had so much fun!

#32

Hidden Playgrounds!  In Battery Park, there’s a hidden playground between two buildings.  It’s called, Teardrop Playground.  It’s right by 22 River Terrace.  And it has the biggest slide ever!  It was magical.

 

Mother’s Day: A Regression Story

Sometimes I regress to my former self.  The self before I was happy; happy with my career, happy in love and happy with a family that I made myself (ok, I had a little help).  The self that was superficial and wanted “things.”  Lots of things.  And I think I have been regressing lately because I’ve been so unhappy post-cancer.  I’m unhappy with my body, with how I feel, with my outlook on life…emotionally, each day is a struggle to get used to my new normal.  I don’t even know what normal is!  So, when I thought of Mother’s Day, I thought of all the things I wanted.  The things I deserved!  I mean, haven’t I raised a child (and did a great job of it, I must say) while undergoing treatment, post surgeries and despite extreme fatigue?  Don’t I continue hormone therapies with terrible side effects so I can be around long enough to be a mother to my growing child?  Don’t I sacrifice, sacrifice, sacrifice?

The answer I came up with was, FUCK YEAH!!!!!!!  And I wanted pretty things to prove my worth as a mother.  What things?  I don’t know.  A pretty dress, earrings….something that I can throw on my body and say, “I earned this.”

I don’t like the person I become when I am unhappy in life.

While there’s nothing wrong with wanting to be treated well, with wanting something pretty or to feel special, putting such importance on a frivolous items defeats the purpose of the day.  And I know better than that.  I am constantly grateful for what I have.  I have a happy and healthy family, as of last week my scans show no signs of cancer, my son is amazingly perfect in every way, I have a job, a home (rental but a home), food to eat and even a little money left over to go out once or twice a month.  I’m not running from my country fearing for my life.  I’m not afraid that a bomb is going to fall on my home.  I enjoy religious (or lack there of) freedoms without fear of the consequences.  My water is safe to drink.  I have water.  I have health insurance.

Life is good.

I have so much.  I have so many wonderful things in my life the greatest being, Oliver.  He showers me daily with kisses, hugs, snuggles and huggles (a hug/snuggle hybrid that we made up).  He tells me he loves me.  He wants to play with me and takes me on imaginative journeys with tickle monsters.  He protects me.  Just yesterday he reminded me to buckle my seatbelt (I didn’t forget) and said, “Am I protecting you, Mommy?  Like you protect me?”

I mean…c’mon!!!!!!!

What more could I want?  There are few things I really, really want that money can buy.  But what I really want is to feel happy, to have a fulfilling career, a marriage full of love and to watch Oliver grow.  Right now, I have that.  I am grateful.

Happy Mother’s Day.