MOVING ON AFTER CANCER: SUE (SECOND IN A SERIES)

The Rubies are back! Diagnosed with breast cancer within weeks of each other, we were a string of strangers that met via breastcancer.org. We jelled like a good marmalade, forming a cohesive support system for each other that saved our collective sanity. We grew close, as real besties do, and I have since dubbed them The Rubies (read more about them here). 

As you can imagine, each Ruby has her own unique breast cancer story to tell, and I want to give each Ruby space to share her story on my blog. My first guest blogger was the marvelous Melanie, our youngest Ruby. (You can read Melanie's story here.)

Today I am introducing you to my second guest blogger, Sue. You'll soon see why Sue wears the "inspiring" crown in our group for making the most changes since her diagnosis. Sue is a military spouse who took stock of her personal circumstances, pushed through her limitations and pursued her dreams in the face of breast cancer. I'll let her tell you how she did it. So without further ado, here's Sue!

"One thing that being a military spouse has taught me is to take control when I can, and give up the desire to control when I have no other choice. We learn to just deal with it, uncomplaining, silently carrying on. When I was diagnosed with breast cancer, I sucked it up and decided to just deal with it like I did everything else. No one told me that was impossible. You don’t just deal with cancer...

A FUNGUS AMONG US

We know I am a slow writer. But I'm also a slow healer — something I never knew until my bilateral mastectomy nearly 22 months ago. It's been one long, bloody (in the British sense) battle after another with this right (aka "problem child") boob of mine.

After struggling for months with delayed healing followed by the loss of my right tissue expander followed by the replacement of said expander followed by additional delayed healing, it goes without typing that I was greatly anticipating the surgery to exchange my tissue expanders for permanent implants. (Why do they make "exchange" sound so simple anyway, like going in for an oil change?) Turns out I was more afraid of this "exchange" surgery than any of the others. My butterflies felt more like...

PROS AND CONS OF CANCER

It's Day 27 of the WEGO Health Activist Writer's Month Challenge and the finish line is in sight! Today's task: List the five most difficult things about having breast cancer, as well as the five good things that keep me going. A total of 10 things I got out of cancer.

TOP 5 CONS OF HAVING BREAST CANCER

1. Being forced to face my mortality
2. Having a lack of energy during the day and trouble sleeping at night
3. Hiding my under-construction chest
4. Taking Tamoxifen
5. Spending so much time dealing with doctors appointments, preparing for surgery, having surgery, recovering from surgery and follow-ups — it's inordinate, ridiculous, and a full-time job!

TOP 5 PROS OF HAVING BREAST CANCER

1. Taking a stand against Pinktober (read my posts here, here and here)
2. Discovering a vibrant, worldwide and uber-supportive web of fabulous, fascinating and funny cancer survivors
3. Realizing that right now, this moment, is the only "for sure" that any of us have
4. Making exercise, eating well and being kind to myself a top priority
5. Falling in love with writing again — and finding my voice via this blog

CANCER HAIKU

WEGO Health Activist Writer's Month Challenge Day 6 is here. Today, my task is to write a haiku about my health focus.

I remember writing my first Haiku in the 2nd or 3rd grade. My teacher liked it enough to enter it into a children's poetry competition. I didn't win. 

© 2012 The Big C and Me

Not feeling terribly positive about this attempt either, but here are three Haikus for you:

Cancer clammers in
Burning like betrayal
Soul survives, barely.

***

Estrogen parade
Fuels the beast within

Tamoxifen blocks.

***

Call brings cold despair

Haphazard terror reigns

Cue the crying game.

Feel free to try your hand at one of your own and post it here! I'd love to read it, and I'm sure others would too.

DO I NEED CHEMO?

In my quest for catharsis, I'm finally picking up where I left off (on the heels of my delayed healing issues). Here's what happened next on my breast cancer journey:

I'm sitting in the lobby of the cancer center, waiting to see Dr. D., my oncologist. I will soon learn four crucial pieces of information:

1) My BRCA test results
2) My Stage
3) My Oncotype Dx score
4) Whether or not I need chemo

Husband is with me. In a moment of tenderness, he asks if I am OK. "I can handle anything Dr. D. has to tell me." Husband is as surprised to hear me say this as I am! In the months since my diagnosis, I have researched, read, lived and breathed breast cancer. I’ve been in touch online with countless women with a similar diagnosis. And it's because of these women that I am able to sit in this waiting room and feel a solid wall of strength supporting me. These ladies have my back. I'm really not afraid. Which is a pretty darn good way to walk into an oncology appointment.

Dr. D. is a man of few words. He looks me straight in the eye and answers every one of my questions.

1) I am BRCA1 and BRCA2 negative. That means I do not carry the gene mutation responsible for some breast and ovarian cancers. Whew!

2) I am Stage 1B. Because my tumor was 3.2 centimeters, it pushed me from Stage 1A (where the size limit is 2 cm) to Stage 1B. Still, it's great news; I am over the moon! Waiting for that number affected me on such a deep level that I don't even think I was fully aware of it. I just know that in that moment, I feel relief for the first time since I was told I had clear lymph nodes.

3) My Oncotype score is 16. That means I have a 10% risk of distant recurrence — and puts me at the high end of the low-risk group. There are 3 risk groups: low, middle, and high. If my number fell anywhere in the high-risk group, I would be given chemo; if it fell anywhere in the middle group, chemo would definitely be weighed as an option; but because my number fell in the low-risk group (albeit the high end of the low-risk group), studies have shown that chemo may do more harm than good.

4) I don't need chemo. Given my age (52), low tumor grade (1), low cancer stage (1B), perimenopausal status, and bilateral mastectomy, Dr. D. says that statistically there is no benefit to giving me chemo.  WOW.

I had an intuitive feeling about this; I have felt all along that chemo would do my body irreparable harm. Hearing Dr. D. tell me I don’t need chemo is a huge, huge relief. (Not to mention that it validates my intuition.) Husband is visibly relieved.

5) I don't need radiation. Even though I had a double mastectomy, I might still have needed rads had my tumor been closer to the surface of my skin; but it thankfully was not. (Another major plus.)

This is all good news. So why don't I feel better?

Dr. D. hands me a prescription for Tamoxifen, a hormone blocker I'll be taking for five years before switching to a post-menopausal hormone blocker for another five. Then he adds, "See you in six months."

Say WHAT? Don’t I need to be monitored more often than every six months? How will I know if the Tamoxifen is working? Am I supposed to be checking myself? How do I do that? I don't understand! Wasn't I just diagnosed? I need more hand-holding. I'm not ready to let go just yet.

I leave Dr. D.’s office feeling completely untethered. And not in a good way.

It takes me a good long while to process and allow myself to fully feel the power of Dr. D.'s words. I have been suppressing so many fearful and negative emotions since my journey began that when I hear good news, my reaction is still one of denial. Crazy, isn't it?

HORMONE SURVEY

Calling all Arimidex, Aromasin, Femara and Tamoxifen takers! Dr. Susan Love's Army of Women needs YOU for a short online survey.

The requirements:
1) You are female
2) You have been diagnosed with breast cancer
3) You are currently taking (or have taken in the past 12 months) Arimidex, Aromasin, Femara or Tamoxifen
4) You live in the United States

The goal of this research study (a joint project of the University of California/Los Angeles and the Dana-Farber Cancer Institute in Boston) is to better understand your feelings, physical symptoms and behaviors as they relate to your taking endocrine therapy for breast cancer.

It is simple, takes little time (I completed it in 15 minutes), is anonymous, and a great way for your voice to be heard. Log on here for more information and to sign up to take the survey.

My thanks to fellow blogger (and Army of Women leader extraordinaire) AnneMarie over at chemo-brain.blogspot.com for the head's up about this survey!  ;-)

THE RUBIES

In the spirit of a new year (and inspired by my blogging pal Marie's thought-provoking queries), I want to open 2012 with a question. Anyone reading this post has either been diagnosed with cancer or knows someone who has. It doesn't matter if you are in the former or the latter group; our collective world is shattered and splintered by The Big C.

But among the fallout and the rubble of cancer come The Rubies — the people who keep us grounded, or safe, or sane, or distracted, or engaged during all the rolling ruckus.

The Rubies are there at the right time, in the right place, and we have the foresight to recognize them as the rare gems they truly are.

As a person dodging the minefield of cancer, I am fortunate to have many Rubies. And without the internet I would never have "met" the majority of them. I count among my Rubies the courageous cancer bloggers who are telling their tale with honesty and humor and bravado. They paint a deeper, fuller, more complex and truthful picture of cancer in all its crazy colors — and we all can benefit from their wisdom. I feel stronger and less alone in my struggles because of them. And so I say thank you to the women and men of the blogosphere.

I also am lucky to have Rubies in the form of a group of women I met online at BCO. We are seven in total, and range in age from 27 to 53. We all were diagnosed with breast cancer at the end of 2010. Five out of seven of us had bilateral mastectomies; one had a single mastectomy; one had a lumpectomy. Three had chemotherapy; five are on Tamoxifen. No one lives near the other (though some ladies did manage to meet in 2011) and I have yet to meet these fair maidens myself, but we "talk" every day. They are my lifeline, my sanity, and my strength. And so to my six Rubies, I say thank you for always being there. I couldn't do this journey without you.

But getting back to you, dear reader: Who was/is your Ruby when you were dealing with The Big C in your life?