Are you my mother?

Today as I write this, my mother would have turned 72. This is tragic given that we lost her to metastatic breast cancer when she was 30. I’ve often wondered over the intervening forty-two years what she would have been like. Would she be proud of us? Would we be close, and talk, and laugh?

 

Would I find that I am like her?

 

The honest truth is that I have no idea on that last one. The six-year-old me only knew Mom. The person who put band aids on skinned knees, broke up the bickering with my brother, and told me I really had to go to sleep because she just saw Santa Claus landing on the house next door. I didn’t get to know Mom the person, but I know she had to be amazing.  How could she not be?  She created my universe.

 

All the years I was growing up, I tried and failed to feel her presence. Anyone who knows me, understands that I don’t believe in ghosts and spirits in the traditional sense. But I do think that when someone has had an important place in your life, they become a part of you mentally. I know this was true with my grandfather. He was there every day for me, and after he passed away when I was 25, I still felt his presence. I think of him when I hear an off-color joke that I know he would have appreciated. I think of him when I eat baked beans, one of his favorites. I love to reminisce with my brother about all the crazy adventures we had camping with grandpa. He was colorful, and lively, and I love how much I am like him sometimes.

 

I don’t have those memories of Mom. The memories that I do have became hazy with time, as has her presence. Its not that I don’t remember her, it is just that it is like a dream.  You know you had it the next day, but there isn’t always clarity.  Much like watching an old 13-inch black and white tv with an old rabbit ear antenna, the picture is sometimes a bit scrambled.

 

It’s a part of my life that I have hated.  I look at pictures and don’t know what they mean.  I ordered a copy of my birth certificate about ten years ago, and was fascinated with her signature.   Up until that point, I don’t recall ever seeing her handwriting.   I’ve clung to scraps of stories to get insight into her nature.  But it’s like watching a movie of someone else’s life.

 

When I was first diagnosed with breast cancer, I thought about mom a lot.  As I began to work through my emotions, I began to wonder what her journey was like.  I tried to imagine going through cancer with two young kids, and my heart broke.  As I have come out the other side as a survivor, I count myself lucky because I know how it can turn out.  And how it may turn out in the end.

 

As I was struggling last week with what I wanted to say in mom’s memory, I received a message from one of my most dear friends and fellow breast cancer warriors.  She said during a recent meditation she had felt mom’s presence, and that she was proud of me and the work that has become my passion, educating the world about breast cancer.  And I suddenly realized something.

 

For the first time in many years, I feel mom’s presence beside me.  I have a glimpse into what she experienced, and for the first time in a long time,  I embrace that we have shared the same path.  I share something with her that no one else did.  And even though it is a horrible, ugly disease, I think that we share a common goal – to fight for all those who are afflicted.   Because I want everyone who has metastatic breast cancer to understand one thing.  Your children will not forget you.  They will love you always.  They will always look for more insights into who you are.  And hopefully one day, we will find a cure for metastatic breast cancer so no more daughters and sons have to spend their lives looking for a connection.

 

A cure.

 

For me.  For you.  For us all.

Guilt by association

I’m sure it will not come as a surprise when I tell you that one of the questions that regularly plagues those newly diagnosed with breast cancer is:  “Why me?”

 

What may be more difficult to believe is the question that hits you once you are done with treatment and have no evidence of disease (NED):

 

“Why NOT me?”

 

Huh?

 

One of the good things that has come out of my breast cancer journey have been the friends that I have made, friends that also fight this insane disease.  They are the best.  These ladies are hilarious, beautiful, caring, and strong.  Early on, we were sharing many of the same experiences.  We were coping with diagnosis, treatment decisions, side effects, grief, and fear.  As for me, I was hopeful and optimistic that I would beat cancer and get back to my life.

 

And, I have mostly.  But there is something new, a little thing called survivor’s guilt.  According to Wikipedia, survivor’s guilt is:

 

A mental condition that occurs when a person believes they have done something wrong by surviving a traumatic event when others did not.

 

(I take exception to the implication that I have a mental condition.   But that’s not really my point at the moment).

 

Moving on…

 

It seems like every time I look up now, another person I know has had a cancer recurrence.  Or has developed metastatic cancer (meaning it has spread to other parts of the body).  And I feel guilty.  I feel guilty because I am “healthy” now.  Because I get to continue to live my life.   Because I am making plans for the future again.   Because for now, I have been spared.

 

Why not me?

 

Some of my wonderful sisters have been through similar diagnoses and treatment.   But while I responded well to treatment, they did not.  While I have not had another influx of cancer cells, they have.  What makes us different?

 

Why them, and not me?

 

There are those who would say I’ve been spared for a reason.  That I have a higher calling.  I don’t believe in such things.  The truth, as only I can believe it, is simply that our cells reacted differently.   The cells in any one of our bodies are as different as I am to you.  So, while I may have been one of the lucky ones who have survived this round, next time I may be the one asking, “Why me?”

 

This is why I try to harness my survivor’s guilt.  I try not to take my life for granted.   I try now to get a little more out of each day.   I try to not be so afraid.  Because at the end of the day,  I need to know that I have made the most of my second chance.

 

Why me?  Why not?

 

 

Hopefully devoted to us all

Like many people, I was saddened to learn that Olivia Newton-John is again battling cancer.  To me, she is not just a wonderful entertainer – she is the first celebrity that I remember openly discussing her battle with breast cancer in 1992.  She advocated for more awareness and better treatments, and showed us that you can have a fulfilling life after breast cancer treatment  – even when you are diagnosed in your mid-40’s.

 

Which is why I think this has hit a lot of my pink sisters especially hard.  I have heard a lot of despair in my support group in the last few days.  After all, Olivia is the one who did it.  She stared breast cancer in the face and said “Oh, hell no!”  It is a reminder to us that any of us can have a recurrence.   Any of us can have a metastasis (when the cancer spreads to other parts of the body).  This is the fear that all cancer survivors, no matter what the type, live with every day.  We all fear the moment that we will once again hear those words, “You have cancer.”

 

But this is not my take away from Olivia’s fight.  When I read about her new challenges Tuesday, the words that jumped off the screen at me were “25 years”.

 

Wow.  Twenty-five years of being NED (no evidence of disease).

 

(On a side rant, I hate the term “remission”.  It implies to me that the cancer is sitting there dormant, waiting to strike again.  NED tells me we eliminated, no, exterminated all the cancer.  Sure, I may produce more at some point, but for now, I have won).

 

But I digress.

 

It is incredible to me that Olivia has been NED for 25 years.  My doctors keep scaring me with talk of five year recurrence rates.  There are days that I can’t imagine more than that.  Twenty-five years feels like a lifetime that I may barely dream about today.  And she did it!  After being treated with 1992 technology,  Olivia has not just survived, she has thrived.   And she shows no sign of stopping now.

 

From her press release:

“In addition to natural wellness therapies, Olivia will complete a short course of photon radiation therapy and is confident she will be back later in the year, better than ever, to celebrate her shows.”

 

I refuse to ever lose hope.  I refuse to think of myself in terms of statistics.  Cancer may win in the end, but it’s going to drag me out kicking, screaming, and leaving nail marks in the door jam.   I have hope for me, for all my pink sisters, and for Olivia.  I hope her treatment is successful.  I hope she tours again and embraces life.  No matter what the future holds, I know one thing.  She has already shown us there is life after cancer.  And I am devoted to finding that for myself.