Tuesday, November 16, 2010

A Clear Message

I was diagnosed with Invasive Ductal Carcinoma five days before my 45th birthday, but this wasn't the first time cancer invaded my life.  When I was 19 my mother learned she had breast cancer.  I can't tell you what kind she had.  I don't think she knew.  No one spoke about such things in 1983. There was a lump, you had it taken out via mastectomy, chemo came next...End of cancer story, unless of course, it wasn't.

Six years later and only a few months after discovering her illness, breast cancer took the life of my mother's younger sister and best friend.  My aunt was my mother's sounding board. The one person listening unconditionally to the fear of finding the lump, the disbelief it was cancer, the rigors of chemo. She got all the gory details. How was it possible her own cancer advanced, seemingly without warning?  Weren't there symptoms? Something? Anything, that seemed off?  Maybe, maybe not.  Who can say what she experienced, what her fears may have been and whether or not she could voice them.

Losing her sister to the very disease she had beaten was unbearable for my mother. She felt it was her fault somehow.  Perhaps she hadn't spread the word enough, didn't scream the signs loud enough.  I don't think she ever believed she wasn't responsible for protecting her sister.  A hard thing to live with.

A few years after that my mother had a recurrence and things never really went back to normal.  As they say, we learned to live a new normal.  By this time, I was in my 30's and getting mammograms every two or three years. I now had a family history I wasn't born with, yet conversations with Mom just skimmed her deep rooted concern for me. I'd get the occasional questions dropped into the middle of a phone call,

"Are you taking care of yourself?  Getting checked?"  

Not wanting to venture into unpleasant territory, I would give a quick answer, "Yes, all is fine."  Topic addressed, subject changed.

My mother died in 2000.  The very same week my brother's mother-in-law, whom we all adored, was diagnosed.  Now, there seemed no respite between the women, between the horror stories, the surgeries, the blood tests, the tumor markers.  What was the number this time?  We lived and breathed by those results.  None of us could just be.  A cruel twist of fate was taking an entire generation of women from my family.

At 40, I began yearly mammograms.  How could I not?  I carried these women with me.  I believed they died because they had the bad luck of being born too early.  Before the advances in breast cancer detection, before heightened awareness brought the disease out of the shadows, before some miracle drugs that may have helped stave off the inevitable. Not going would have been disrespectful to their memory, not to mention, unbelievably stupid. I felt I owed them more than that.

Approaching 45, an ultrasound was tossed into my mix for the first time, and there it was, not on the mammogram as you would expect, but that ultrasound -- Newly added to the routine check because of my mother, because of my aunt.  Without that ultrasound, I would have blindly lived another year thinking I was fine, while it grew inside.

In 2009, it had a name all its own, not just Breast Cancer, but Invasive Ductal Carcinoma. Discovered while still under half a centimeter and zero node involvement.  Stage 1.  I was lucky that day.

My women fought their battles in strong silence, but their message carried through loud and clear.  Their legacy wasn't the cancer. It was their journey that educated and enabled me to be diligent with my own screenings.  I can say with certainty, if it were not for them, my cancer would not have been found as early.  That's a fact and that's quite a gift they've left behind.

4 comments:

  1. Stacey, This post brought me close to tears because it describes so much of what I, too, have experienced. I am sorry for all the losses in your family to this darn disease. Too bad your mother felt so much guilt too. I feel like I owe my mother big time too, because she was tested (positive for brca2) and then relentlessly campaigned for my siblings and I to be tested as well. I wasn't ready, thinking I had some time to think about it...wrong. And the guilt she felt for being positive was incredible, so I understand the guilt stuff too. Anyway, I was tested after my diagnosis and it made a huge impact on my treatment decisions. What it comes down to is, like you said, we owe so much to the women who have traveled this path before us. Their experiences have helped those of us diagnosed today. I hope our experiences help the next generation as well. Like maybe a CURE! Sorry, I started rambling... but this one touched a chord to be sure! Tnank you.

    ReplyDelete
  2. Stacey - thanks for this post. Yours is a powerful story indeed. One of my best friends is surrounded by history of breast cancer in her own family, (as well as me) and she and I have had many long conversations (arguments) as to whether she should be tested for the gene. It's hard being in the place I'm in now (Stage IV+BRCA1) and hearing her resistance to doing anything about it. I know it's her prerogative, and that is such a personal decision, but still I want to shake her at times. If only I had known BEFORE I was diagnosed (although mine was never on the radar as I had no family history that we knew of; Dad turned out to be carrier). But what can you do other than be as supportive as possible, if and when the time comes. It's hard though, especially when you understand the legacy so intimately.

    ReplyDelete
  3. Nancy, I didn't want to have the BRCA test either. I figured it wouldn't change anything, wouldn't guarantee anything either way so why do it? Eventually, I was tested after being diagnosed and guess what? Negative. BRCA doesn't get the blame here, it's some other mutant gene, research has yet to distinguish. In the end, though, I still decided to have a bilateral mastectomy. I had seen too much not to. I needed to know I was doing all I could... This will be a future post on my part, no doubt.

    Cancer sucks!! I'll stop on that note... I'm also one to ramble.

    ReplyDelete
  4. Anna, thanks for writing and sharing. I know exactly what you mean. I have a close friend that recently told me she went for her yearly mammo, but didn't pursue an ultrasound. I was so angry at her. She knows my mammo was clear and it had been the ultrasound that found it. I'm like a broken record about having both and all she said was her doctor didn't recommend it. I'm still pissed thinking about it, almost personally offended. Does she still think it can't happen to her?

    But, your right. We can't tell anyone what to do. It's personal and everyone makes the decision they can live with. It's the same when I hear someone opted for lumpectomy over mastectomy. I have my own opinion about it, but I wouldn't force it on anyone. I can only share what I know and let them decide for themselves.

    ReplyDelete