Too Soon

Picture taken in Prospect Park, one year ago.

In Prospect Park near where I live here in Brooklyn, there is an amazing tree.  In the summer, it looks like any other tree.  You could pass it and never give it a second thought.  It is in the fall that you see it’s true potential; it glows with orange and yellow.  The colors are like a fireball and the sight literally stops people in their tracks.  Year after year, this tree fails to disappoint and my husband and I make an annual pilgrimage to bask in it’s beauty.

Last weekend, we had a pretty rough storm here in New York.  Rain fell all day long and the wind gusts were strong and relentless.  The next day I went for my run in the park.  As I turned the corner I took out my phone to take a photo of my favorite tree.  But what I saw was not the full glow of neon leaves but rather threadbare branches, patchy and flimsy.  The storm had taken the leaves before they were ready to fall.  I didn’t take a photograph.  I couldn’t.

Immediately, the tree made me think of all the women who have endured the storm of cancer and who, like the tree, have been taken from us before their full bloom and glory have been shared with the world.  It reminded me that nothing is certain.  Nothing is permanent.  That all life is fragile.

Breast cancer awareness month ends in just a few short days.  We have been subjected to the usual onslaught of media coverage, walks for the cure, cheerleaders with pink sparkle bows in their hair, products being sold with false promises of major donations, signs making a joke out of our disease and pink t-shirts galore.  But that’s not what this month is about.  This month is about remembering all of the women who have been taken from us too soon; whose potential will never be fully realized, dreams never completely fulfilled.  Just like my beautiful tree.

I Have Always Been Aware

Me on the left, next to my grandmother, my brother, Jesse on the right and my cousin in the front.

I honestly can’t remember a time that I didn’t know about breast cancer.  Along with the Holocaust stories my grandmother would share with me, crying in anger for what she had experienced, she would also cry about losing her breast to cancer.  She often complained about the pain she was in and how uncomfortable her prosthetics were.  I remember seeing her body, one breast completely mangled, missing, concave.

Breast cancer is something that’s inherited in my family.  Some families get long legs, blue eyes, dimples.  We get breast cancer.

I always knew that breast cancer was going to happen to me but I planned out the way it was going to happen.  I’d be in my 60s.  I would have been getting yearly mammograms for 20 years at that point so, when we caught it, it would be very early stage.  Treatment would be minimal.  I would be praised by doctors for being so diligent about my care.  They’d wish that there were more patients like me.

I never expected to avoid the cancer.  I just never imagined, in a million years, that it would happen to me in my 30s and that it’s effects would be so life altering.

This is one reason why breast cancer awareness month is so hard for me.  Because I was so aware of the fact that it would happen to me and even though I was more aware than most thirty something year olds, it didn’t make a difference.  I still needed to lose my breast.  I still needed chemotherapy, radiation, hormone therapy.

I think we should completely do away with Breast Cancer Awareness Month and replace it with Breast Cancer Advocacy Month.  It should be a month where doctors and nurses go into underserved communities to provide free care to all women.  It should be a month where congress hears the pleas and needs of my metastatic sisters.  It should be a time when the whole breast cancer community comes together; patients, doctors, researchers, etc…to discuss what we need to move forward.  It should be a time when awareness looks like real statistics and information for men and women rather than cutesy slogans, pink products and images that sexualize and demean our disease.

Awareness only gets you so far.  It helps us to be curious and, hopefully, diligent about our bodies and care.  But that’s it.  And that’s not enough.  I am proof that it’s not enough.

 

The Grass Is Always Greener

I had another pouty session for myself recently.  I got the results of my blood test back from my oncologist and, for right now, they are reading as post-menopausal.  When your cancer is ER+, this is the news you want to hear.  You want your body to be making as little estrogen as possible.  I have be purposefully and likely permanently put into menopause.  While I suppose this is good news, I’m really very depressed by it.  I never minded getting my period that much.  It’s not like I liked it or anything (I had terrible cramps and crazy mood swings) but getting it every month let me know that my body was still working and healthy.  It was something I could count on.  I knew exactly when it was coming (often down to the hour) and it made me feel like a woman.

I haven’t gotten my period in nearly two years.  Sometimes I mention this and a woman’s first response is “Oh, that’s so awesome!!!!”  I can see why one would say that.  But the loss of my period is directly linked to my loss of femininity.  Not only is that thing that made me a woman, that I could count on every month, gone, but so is my ability to have more children.  And that just fucking sucks.

Sometimes I forget that, in reality, I’m really very lucky.  Yes, cancer was shit and it’s the gift that keeps on giving but, I’m here and, at least for now, I’m not going anywhere.  While I complain about being forced into menopause, I know that there are many women who wish they could be on medications like Tamoxifen or Zoladex (which I’m off of right now) to keep cancer at bay.  Women who are triple negative or diagnosed stage IV.  But sometimes I think about the women who are not ER+, (who would give their right leg to be on this medication) and think, well, at least they have a shot of having a baby (if chemo didn’t force them into menopause).  It’s stupid.  It’s insensitive.  But it’s how I think sometimes.

Sometimes the grass seems greener on the other side.

 

But knowing that in many ways I have it good, I don’t want to forget that this can change tomorrow.  My luck could run out and I might wish for the days of hot flashes and infertility being my biggest worry.  I know that at any time I could become one of the 30%.

So, to continue with this October breast cancer month thing that we’re in, I want to highlight a couple of organizations that are working on a cure for the only breast cancer that kills, stage IV.  While all breast cancer sucks and the treatments for it have the most awful effects, there is no cure for stage IV, only treatment and management.  This needs to change.  Like, yesterday!!!!!!  These organizations are fighting the good fight and are dedicated completely to finding a cure.  There are no fancy advertisements.  No pink boas or ribbons.  Just research, research, research.  If you have some money that you have been aching to donate, I urge you to consider donating to METavivor and Metup.

Here’s METavivor’s mission.

METAvivor is dedicated to the specific fight of women and men living with stage 4 metastatic breast cancer. At the time of METAvivor’s founding, no organization was dedicated to funding research for the disease and no patient groups were speaking out about the dearth of stage 4 cancer research.  While more and more people have taken up the cry for more stage 4 research, METAvivor remains the sole US organization dedicated to awarding annual stage 4 breast cancer research.

Here’s Metup’s Mission

MET UP is committed to changing the landscape of metastatic cancer through direct action. We protest and demonstrate; we meet with government and health officials and researchers; we support research into metastatic disease; and we speak out against the sexualizing of breast cancer. We are convinced that the deaths of women and men from metastatic breast cancer are a paramount issue, and we pledge ourselves to oppose all who deny the reality of the 522,000 people who will die from metastatic breast cancer globally every year while waiting for a cure to be found.