"Just"

The word "just" got me in trouble the other day.

Deservedly.  I am bending over for my spanking now. Please be gentle.

Somebody had sent me a link to an article about an extremely attractive women with DD breasts who had been diagnosed with the BRCA mutation at age 19.  By 27, she had made the Sophie's choice to have a prophylactic double mastectomy.  I cannot tell you how much I admire that woman's courage in facing up to her odds of contracting cancer and removing body parts that were, indeed, quite spectacular.

As her surgery got close, she went down Road Obvious and threw herself a big good-bye boob party, with boob cupcakes,  treats, and boob-related decor. She got some press, perhaps because of her looks, perhaps not, (although articles did prominently mention her cup size).  Anyway,  I can't imagine this is a rare thing to do, but here it was in the media available for comment.   This event was touted as being empowering for women yet the entire article's core was on the loss of her breasts rather than the story I would have liked to see as a metastatic cancer patient: she is outsmarting cancer.  

It seemed to me that the whole piece, with pictures of her topless and photos of boob-shaped food, spotlighted the horror of a hot woman having a mastectomy rather than the triumph of avoiding breast cancer. The death of her mother and sister from breast cancer was mentioned - but relegated to a sentence, with nary a photo or name.

It is horrible to have a mastectomy.  Cutting off any body part is a choice nobody should have to make.  I know that first-hand. I can't imagine how hard it would be to do that before cancer had occurred, but I'm grateful that science has given her the ability to change her future. Unfortunately, the article said none of that; it was all about her coming to terms with the loss of her breasts.

I posted a link to that story on facebook, with the following comment:

"To be honest, I joked about a good-bye boob party too. Humor is the way I handle things. But that was before I truly understood the media event that is breast cancer, and the trivialization of a serious disease. This woman doesn't have cancer, she just has the BRCA gene. So I am sympathetic to her but I don't find these things "empowering" to women."

Oops.  The word "just" was the word people lasered in on and a few thought I was being dismissive of her, that I thought having the BRCA gene and having to go through what she did was insignificant.

Actually, I commented on it because I thought that her experience was MORE significant than the way it had been portrayed.

It was a very poor word choice, no question, and the whole thing was hastily and thoughtless written. That "just" didn't show that I honor that woman's strength, or those who have made the same choice.   She also certainly has a right to throw a party that helps her deal with a tragedy and which provides her comfort. I know a person can only be where they are, including me.  Five years ago when I started this blog, I only had a vague sense of the pink world and I, too, thought about having a bye-bye boob party (as you can go back and read.)   As I have gone through my various treatments, become metastatic,  and gotten deeper into the cultural and medical aspects of this disease, my eyes have opened.  My interest in writing about it has become one of encouraging the public to remember that breast cancer is a potentially deadly disease, instead of the current focus on pink and ribbons, bras and boobs. Although unclear, my thought process was about the event coverage rather than her decision to have a party. 

As a culture, we deny the seriousness of this disease.  If you don't believe me, just remember October.

In this case, it seemed that the media was mourning her insanely beautiful boobs instead of celebrating her chance at an incredible, successful life.  From my perspective, the article missed the point and followed the typical line of "save the ta-tas", which is why I linked to it.

I should never have used the word "just."  Mea Culpa.  I used a diminishing word and certainly didn't explain my point well.  Get out your paddle, I'm bent over and am willing to take it.  I did lose some facebook "likes" over that word, and trust me, each loss hurts,  but I have to admit, sometimes it's deserved.

But..... and there is always a but with an apology...it got me thinking...

Even if I had meant the "just" personally, am I not allowed to even recognize differences in experience?  Is it incorrect to think that one person might have had a more difficult time and thus more depth of wisdom than another?  Do we all have to be even?  Is being diagnosed with the BRCA gene and having a mastectomy always to be considered the same thing as living with five years of increasingly difficult cancer treatment and an incurable prognosis?  

Heck, I know there are people out there who have had it worse than I have, lots of them.  Lisa Bonchek Adams is struggling right now, with the spread of mets to her brain and liver. She's back where I was after c-diff, when moving ten feet was a triumph.   Roger Ebert lost half his face and had great physical suffering before his death. Many have suffered more, been through more, have learned more.  Many never got a period of NED as I have been fortunate enough to receive,  and many have died swiftly.   Do I think they had it worse than me? Yes.

Do I feel that negates my experience?  No.

Obviously, the word "just" was wrong and I didn't mean it the way it came across and when I realized how it sounded, I swiftly changed it. But if Roger Ebert had said to me "You just lost your breast, I lost my face" in the context of how people look at you - I wouldn't call him wrong.   How could I?

I especially wouldn't find him wrong if I'd known he had spent a lot of time and energy advocating for all people with facial cancers, even those who were not disfigured.  I think anybody can make a slip of the tongue, or fingers, and sometimes a "just" has to be put in context of an entire conversation or body of work.

There are differences in experiences, and what we learn from those experience can change over time and we should not be afraid to say that. I would have thrown this party six years ago but now I would find it feeding into the pink maw of misinformation.

No one can quantify suffering.  It should not be diminished by the word "just."  There is no question about that.  But my thoughts were about the media portrayal of her suffering.  Someday, I would like to see a story like this with a BRCA+ woman taking control,  but instead of a good-bye boob party, she would throw a Hello Life party, with world-shaped cookies and decor to reflect the future she has given herself.

It seems in the world of breast cancer, we often require DDs to attract attention, and once attracted, the point that this is a tragic disease is lost.

I just think that's wrong.

Time Passes...

When my son was home from college, we watched the "Up" series - 7 Up to 56 Up, one per night. It's a fantastic documentary series, but it made me realize how impossible it would be to capture what has happened to any individual in 7 years.

If I'd been in this series, last time they filmed me I would have been a school secretary, raising my kids, healthy and happy, hopes for the future - for my children's lives,  thinking my husband and I would retire and perhaps move to Arizona where we'd travel, grow old together.

Cut to today.  Those of you who have read from the beginning know what a long, difficult road the past five years has been.   It would be impossible to share it adequately in a ten minute TV segment, and so what they would show is a woman who appears happy and healthy.   The years of worry, pain, fear, acceptance - all would be glossed over.  And they have changed me so much that I believe these have been the most important years of my life.

The Soul Pancake people did a good job of capturing the love I feel for my family and what living with disease is like, but it's hard to get the day-to-day struggle I have experienced and still am going through.   It is also impossible to understand the amazing experience it is to still be here after having very little statistical chance.

Oh, I can describe what I've been through in a short paragraph.  "I was diagnosed with stage II breast cancer in 2009 and had a mastectomy, chemo and a year of herceptin.  Metastatic cancer was found in the liver in 2011, and since have had a liver resection, ablation, 7 chemos, SBRT, nearly died from C-Diff Sepsis,  and finally achieved remission with the Herceptin/Perjeta combination."

That describes the story - but doesn't tell it.

Can one?  People are visual, and I don't really have many pictures of myself as I went through it, but could I tell the story in a short time with what I had?  

I did a little short video with flipgram to see if I could sum it up.   This barely skims the surface.  But here it is.

I have a PET scan coming up.  I have pain in my right side that I honestly believe is scar tissue and not cancer, but we have to check.  I hope it shows I'm still in remission but won't be disappointed if it doesn't.   I think it will be fine though, and on the 21st I start an exercise class for cancer patients to try to control some of the pain and strengthen my body.  I am clawing my way back to that woman of five years ago.    I once again have plans for the future, different ones than before.  Now have to include medical treatment every three weeks, and all that comes with that.  I am not going to leave the state, I'm not going to start over with new doctors and insurance, and I am not healthy enough to travel, at least not yet. But I have plans just the same and that is miracle enough.

I look at the people in that Up series a little differently because I understand that there is no way that their experience can be captured accurately.  Think back over the past five years of your life - can you sum it up in ten minutes in such a way that people understand all you have experienced?