Thoughts from a Breast Cancer Survivor at 5 Year Mark

October: Breast Cancer. Pink. Survivor. 

WARNING: not-for-the-faint of heart.

The best part about being five + years out? 

I'm back to my 'real life.'

My real life right now is one delicious, delightful, topsy-turvy whirlwind of joy.

My whirlwind includes travel. Professional thrills. 

Grand-kiddos. Blogging. New creative projects.

Periodically its well worth it to recognize how that joy is built. 

I am a survivor and every new day is reason for a party!

October is the month of pink. It's the month of pink walks and pink ribbons and pink heart-felt commercials and pink sporting events -- even football players wearing pink accessories. Everywhere you look there's a pink reminder. 

I am a two time survivor of early stage breast cancer, so the world being awash with pink fills my heart with a whole host of emotions not all of which can be appropriately expressed by the color pink. All this pink swirls together and creates a rather frothy pink reminder of the muck of my own roller-coaster madness of ups and downs in my own battle with the pink beast. 

Don't get me wrong right at the beginning of my wandering, scattered thoughts. 
I'm grateful. In fact I'm very grateful! 

I'm grateful for support. I'm grateful for the candor where 'we' can talk about this heinous disease. Decades ago I would have suffered in silence, as that was the norm. I would have held my tongue, as that was the expectation. I would have been isolated, as that was the reality. Now there are all manner of  pink support groups, and pink pamphlets. The pink doesn't stop there. There are pink yogurt lids, pink cars and pink airplanes. You name it. You can get it with a pink ribbon applied. All this pink in the name of Breast Cancer Awareness. 

Here comes some candor. In the year 2012, I think the world is indeed "aware." In fact, I was greeted on my flight this weekend by Delta flight stewards dressed in pink from head to toe. Aware indeed. Where does all of this money from ribbons and awareness get funneled? That is a burning question being asked by the sistah-hood of the sorority no one wants to join. There is even a movement within the survivor community to remind folks to "think, before you pink." 

It seems to some in the survivor community that our disease of disfigurement, scars and suffering has become something of an ad-campaign in the hands of a marketing machine. The "think, before you pink" sentiment is a reminder to learn where your contributions are headed. There are many ways to funnel your hard earned financial contributions into the hands of those doing research-- if that is your hope. Or perhaps you want your contribution to go directly to a patient wondering how she will pay for the gas to get to her daily radiation treatments. Think. Learn where your dollars are headed. Hence the THINK portion of the "think, before you pink." 

[Would you be shocked to know that there is an annual thread of photographs circulated in the BC survivor community where survivors take pictures of the.most.ridiculous.use.of.a.pink.ribbon? Pure craziness abounds, where some of these ribbons are applied. I'll never forget while I was still fighting the cumulative effects of daily radiation which was then followed by an agonizing case of shingles, that had been exasperated by the burning of my flesh for the best possible outcome, that I saw a pink ribbon on a massive bag of dog food. It was my first Pinktober. It just stopped me in my tracks and brought on tears in the grocery store. Dog food + Pink ribbon = BIZARRE. That's the thing about surviving. Ya never know when a whole new set of emotions will strike you in the pet aisle of your local grocery. Think, before you pink.]

Back to Delta and their years long campaign of pink lemonade offered on board every flight. Their efforts have raised millions with proceeds going to The Breast Cancer Research Foundation. BRILLIANT! I LUV'd reading of their campaign in the airline's magazine. Dedication to research. Millions. This little tangent is included as part of my ramblings, because it literally unfolded before my very eyes in the last couple of days. YEAH RESEARCH!

Now lets get a little more personal. My story. My experience in a nutshell.

A quick recap:

 I turned fifty. 

Went for my normal routine mammogram as I'd done many times before.

Not exactly fun, but I went skipping in + out of the process, not blinking. 

THEN. 

I got the call that no one wants to get. 

"We need you to come back. We have some concerns." 

That was on a Thursday. I was able to get a biopsy scheduled for less that 18 hours later. (Kinda unheard of. VERY grateful to get on with the battle.) News came back on Monday. 

As they had suspected: Ductal Carcinoma InSitu, does that look better in pink?  

This is the part where everyone tells me how lucky I am. 

I know nothing about Breast Cancer..... and have NOT sensed my luck at that point of my story. 

After two surgical consultations, I had a partial mastectomy the very next Friday. Barely over a week from dx-diagnosis to life changing surgery. Let's get on with this - was my response to it all, the sooner the better. From there I made 36 trips to the hospital to complete radiation..... to give me the very best odds against any sort of recurrence. I also began taking the daily medication, Tamoxofin with a host of its own side effects and concerns, but theoretically it could further cut my odds of recurrence in half. Let's take the aggressive route. 

Do it all. 

With the early stage, my age, my treatment choices -- 

my odds of facing Breast Cancer again, in the words of my oncologist were approximately 1 to 2 % or possibly even less. Cancer is an inexact science. 

You know the thing about odds? If its one in a hundred, someone STILL needs to be that person. I went on planning to be one of the fortunate 98-99.  

I gradually regained my life already in progress. I continued having diagnostic mammos every 6 months. Eighteen months later there was concern all over again. 

I was put on a 'wait-and-watch' regimen. (Kinda like hell on earth..... don't think about that pink elephant dancing in your hallway.) 

Turns out, I was indeed the one in a hundred. New tears. New tilt-o-whirl. New tests. Since I had already gone for the partial + rads route on the first episode, there was no alternative but to go full mastectomy the second time around. Many personal decisions were made on how to get me back to the life I loved as quickly and directly as possible. 

This is where my story goes from bad to worse. While the second diagnosis was also staged as DCIS, my sequel included an awful infection at the site of my chest wide incision. I'll spare you the details. Just suffice to say that 'it' was ugly. Seriously ugly. Hardly any shade of pink at all. 

The infection created a whole host of issues that included frozen shoulder and the very little discussed parallel hardship of Lymphedema. How can I summarize that chapter? That was the exact same time frame when my dearest friend, BC mentor and one of the all round world's-best-persons was dying of our pink disease.

Saint and Faith

While I was going to physical therapy several times a week to regain use of my right arm, we spoke on the phone anywhere from two times a day to a dozen. We were lifelines for each other. It seemed a little shallow of me to be concerned about my arm when she was losing all sorts of her capacity to be human. 

So we talked. And cried. And I read to her the support posted at our BCO (Breast Cancer Organization)  sisterhood, because at that point she could no longer see. She could no longer read. So I read to her and then typed out her responses. I read favorite scripture verses. I read poetry. And we laughed. We laughed at each other and we told stories. I told her daily that she defied her death sentence just so she could keep me company during those darkest hours. 

Saint and Faith. Faith and Saint. 

The pink beast took my dear friend. She was one of 40,000 'survivors' to have current science fail her in that particular calendar year. She died. Game over. I miss her like crazy. She was 'my people.' During those hundreds and hundreds of hours of phone conversations I did indeed have ample opportunity to reflect on my good luck. 

So theoretically I am five years and seven months past my first diagnosis, but I suppose I need to start that clock counting all over again. I am now two years and ten months and three weeks past the second diagnosis. The use of my right arm will never be the same. I have to always be aware of the risk and threat of Lymphedema and do my best to keep that chronic and debilitating condition also in the 'shallow end of the pool.'

In my five years I've learned much about myself. I've learned about the compassion of total strangers. I've also learned the harsh reality of 'friends' who shocked me with their insensitivity. Let me tell you that it is NOT appropriate to open the quilted jacket of a woman who has just had a bilateral mastectomy and say, "So, just how flat are you?" How could I make that up? Really? 

What would I suggest that you say to your dearest friend walking the line of keeping sanity in the midst of diagnosis and treatment? What upbeat insight? (I've been working on this article all day and will probably keep editing it over the days ahead.) 

• Suggest they go to Breast Cancer dot org: BCO. 
• Be present. No need for presents necessarily. Just be there.
• Ask your friend how they are doing and then listen. 
• Ask your friend what they need. Ask what they need to hear.  
• Send a happy card. Nonsense even. Thinking of you.
• Offer to fold laundry or run errands or sit and have a cup of tea.
• Don't tell of that acquaintance' wife who just died of BC. 
• Respect the decision making process your friend selects. 
• Be very wary of sending an email of the world's least known cure.
• Ask if your friend wants an entire assortment of pink ribbon jewelry and a whole new wardrobe of BC pink ribbon gear. The entire spectrum of reactions to the pink ribbon are to be anticipated and may change from day-to-day.
• Accept all of the emotions your friend expresses.
• Listen. Listen. Listen. 

Are we closer to a CURE today? What I know for sure is that primarily women stand to lose so much from this disease. It's certainly not just physique that is at stake. So many have lost their livelihood, their creativity, their drive, their professional standing, their finances and even their marriages. The time for 'awareness' has passed, in my humble opinion. The time for support has arrived. The time for a CURE is sorely needed. Learn how and where your contributions are headed. Beat the drum. Say a prayer. Imagine a world without Breast Cancer. Imagine a world without cancer at all! 



A group of 'kid bloggers' have joined together to offer thoughts of support on going pink. You'll find everyone's article grouped here below.I am so fortunate to belong to this encouraging group and I'm genuinely delighted to contribute my long ramble in the hopes of prompting one person toward self-care, or one person to receive encouragement. 

-- Debbie --