These things are not tied with a pink ribbon (this is what breast cancer has done to me)

October 22nd, 2014 § 27 comments

IMG_9097The past few weeks have been some of the most challenging this year. By the time you read this I will have had my third Navelbine infusion. Unfortunately, we do not have any evidence so far that it is working. Each chemotherapy that I try at this point only has about a 30% chance of working even for a short period of time.

For now, we anxiously wait. But that waiting means that the cancer is progressing. Increased fatigue, pain, nausea, weight loss, shortness of breath and weakness are my companions right now. I do have my team helping me manage these side effects, but there is trial and error involved. Also, at this point an increased cancer load is part of the problem. The only thing that will truly help that is to find a systemic therapy that works, and let it do its thing. For that reason I haven’t been able to post as often as I wanted this week.

I do want to share that the book auction to raise money for my metastatic research fund at Memorial Sloan-Kettering is now live, and it runs through October 24th. This is an exciting event. You can bid by posting a comment including the amount of your bid below the photo of the box you want (you must live in the USA to participate). All proceeds fund research and do NOT go to my personal medical care. Boxes of signed books have been donated by authors and then collected and curated by Erika Robuck. You can click here to go to the Facebook page and then scroll down to see all of the boxes.

Last year the event raised over $4000 and we are on track to blow that out of the water. If you want to donate directly to the research fund but don’t want to participate in the auction, don’t have Facebook, or don’t want to deal with Facebook, please feel free to go here. Donations of any amount are so appreciated.

For today’s October re-post I’ve chosen one of my first pieces, one that readers ask for again and again. I have decided to revise it here, now that my diagnosis has changed. I’m keeping the original post online, though, and you can see that here.

………………………………………….

I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.

I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.

I wish I could tell her to gather strength, and wisdom, and patience like a squirrel gathering acorns for the winter.
“Save those things up,” I’d say, “you are going to need them… every last bit.”
I wish I could share the perspective I’ve gained along with all of the love.

But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.

My first diagnosis with breast cancer took its toll on me and I was quite sure I would never, ever be the same.
I had no way to know then that “never, ever the same” would mean something worse, something fateful, a juggernaut.

I told myself “they’re only breasts.”
I said, “I don’t need ovaries, I’m done having children.”
But that obscured the truth.
The truth is that it did matter,
They do matter.
They said my uterus was atrophied.
It almost sounded funny when they said it.

“Who cares? What does that matter?”
It did. It does. It will.
At the time, to get rid of all hormones was thought to give me a better chance at avoiding a recurrence, but there was a price to be paid.
No estrogen mattered more than I ever thought it could.

It felt worse than taking injections to suppress my ovaries, worse than taking Tamoxifen.
Those were easy.
I had no clue what was ahead.

I wore the skirt, I put the makeup on, I walked the walk.
But I did not feel like a woman anymore.
I most certainly do not feel like much of one now.

Make no mistake, I am proud of what this body has done for me.
My three children top the list.
But now I must focus on some of its cells,
now malignant,
throughout this body,
growing at a horrific pace.

My body has now become a personal science experiment.

Sometimes, when things are going well, you could look at me and have no earthly clue.
You see,
Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.

While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.

These things are not tied with a pink ribbon.

These things last longer than a month.
This is part of awareness.

This is just a part of what breast cancer can do.
This is just a part of what breast cancer has done to me.

This is part of what can happen
Even with early detection and treatment.
This is what can happen even years later.
This is why people should not prematurely claim victory.

This is why you are not necessarily safe.
This is what breast cancer could do to you.

This is how what some think they have “beaten” or “bid goodbye to” can still
kill.

This is what it will do to me.

When art doesn’t just imitate life, it captures it (Angelo & Jennifer Merendino and The Gathering Place)

July 20th, 2012 § 8 comments

There is a natural tendency to turn our heads from things which are upsetting.

But as adults it is our responsibility to be aware of them.

Protecting is not always the right thing.

Jennifer Merendino was first diagnosed with breast cancer in 2008, shortly after her wedding. Her husband Angelo began taking photographs (www.mywifesfightwithbreastcancer.com). Angelo documented her surgeries and treatment all the way through her death in December of 2011 after she experienced metastases to her liver and brain.

The Gathering Place: A Caring Community for Those Touched by Cancer in Westlake, Ohio, said they wanted to exhibit some of Angelo’s photographs in their art gallery.1

After a successful opening, The Gathering Place pulled the exhibit. In their own words:

Shortly after the exhibit was hung some of our volunteers (many of whom are cancer survivors) and our participants found it very difficult and emotionally upsetting to see the exhibition. Because our mission at The Gathering Place is to provide a peaceful, healing and nurturing environment where our participants feel supported and encouraged, we have chosen to remove the exhibit so as to not add to the emotional challenges a cancer journey creates.

 

It’s not that I can’t understand how someone might find the images disturbing. In fact, I think you are pretty hard-hearted if you don’t. But that is the point. It isn’t enough to say you want to be “a community for those touched by cancer.” It’s important to get the message out: breast cancer isn’t pretty. It isn’t a pink ribbon or a one-day walk to raise money. It isn’t about wearing a pink football cleats in October.

I do not agree with The Gathering Place’s decision to remove the photographs from their art gallery once they had seen the photos, chosen to display them in their gallery, and had a public opening. Despite their stated goals, in this instance they don’t “get it.” The proof of that to me is the web address name The Gathering Place used to announce the removal of the photos from the gallery. The web address for that post is http://www.touchedbycancer.org/2012/07/art-imitating-life/

Art imitating life? No way. Angelo’s art is no imitation. It’s the real deal. It captures the reality of his wife’s cancer treatment for all to see. And sometimes, even when it’s painful, we must look.2

  1. Thanks to PinkRibbonBlues.org for the summary of the timing. You can see Gayle’s post on this topic here []
  2. for more of my thoughts on the reality of breast cancer, read my post “These things are not tied with a pink ribbon” []

These things are not tied with a pink ribbon (Breast Cancer Awareness Month)

January 14th, 2010 § 2 comments

I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.

I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.

I wish I could tell her to gather strength, and wisdom, and patience like a squirrel gathering acorns for the winter.
“Save those things up,” I’d say, “you are going to need them… every last bit.”
I wish I could share the perspective I’ve gained along with all of the love.

But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.

I guess I must have done something right along the way for when it came time to fight I did,
and I did it well.
But that struggle took its toll on me and I am quite sure I will never, ever be the same.

You tell yourself “they’re only breasts.”
You say, “I don’t need ovaries, I’m done having children.”
But that obscures the truth.
The truth is that it does matter,
they do matter.
They say my uterus is atrophied.
It almost sounds funny when you say it.

“Who cares? What does that matter?”
It does. It does. It does.
To get rid of all hormones gives me a better chance at avoiding a recurrence, but there is a price to be paid.
No estrogen matters more than I ever thought it could.

It feels worse than taking injections to suppress my ovaries, worse than taking Tamoxifen. Those were easy. I had no clue what was ahead.

I wear the skirt, I put the makeup on, I walk the walk.
But I do not feel like a woman anymore.
I’m proud of what this body has done for me:
3 beautiful children,
surviving cancer,
healing the broken bones, the infections, the autoimmune diseases.

There is no week without migraines,
no cold winter day without icy implants.

Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.

While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.

These things are not tied with a pink ribbon.

These things last longer than a month.
This is part of awareness.

This is part of what breast cancer can do.
This is what it has done to me.1

  1. October 20, 2010 []

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