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?

THE WAY THE WORLD IS MADE

(© Copyright Rennasus 2012)

"All life is interrelated. We are caught in an inescapable network of mutuality; tied in a single garment of destiny. Whatever affects one directly, affects all indirectly. Strangely enough, I can never be what I ought to be until you are what you ought to be. You can never be what you ought to be until I am what I ought to be. This is the way the world is made."

—Martin Luther King, Jr.

LINDA IN LAS VEGAS

(Courtesy Youtube/Linda in Las Vegas)

If you haven't yet seen this video, check out the awesome and uber-courageous "Linda in Las Vegas" as she tells the world exactly what breast cancer is — and what it is not.

The Youtube video is just 4 minutes and 25 seconds long; I urge you to see it through to the end. Linda is a former Komen supporter who reveals not just her thoughts about having BC, but her scars. And her inner strength too. (In spades.)

Bravo, Linda!

(PS Thanks to Marilee for discovering this!)

SPOKE TOO SOON

Another heroine has fallen... Susan Neiber (aka WhyMommy) of Toddler Planet fame passed away today from a rare and aggressive form of inflammatory breast cancer. She leaves behind a family that includes two small children. She was a scientist for NASA.

I discovered Susan's blog just a couple of weeks ago... January 22, 2012, to be exact; it turned out to be her last post; for me, it was her first. I was only just beginning to "know" her. An article about her blog ran in The Washington Post online on January 24, 2012. And today she is gone.

Rest in peace, Susan.

FALLEN HEROES

When I started blogging about breast cancer 10 months ago, the world wide web opened up and extended her loving arms around me. I came in contact with (and was embraced by) a great many people fighting this disease — all writing about it with humor, with bravado, with insight. I knew, statistically speaking, that some of these lovely bloggers that I "follow" would one day stop blogging.

Not because they had writers block (though that certainly happens); and not because there was a dearth of things to blog about (the Komen controversy alone could fuel us the rest of our days). Nope. I knew they would stop blogging because they would pass away.

This morning, I read that Rachel from The Cancer Culture Chronicles died at the age of 41 from metastatic breast cancer. She had a tenacious wit and a marvelous sense of humor. She wrote a guest blog for Breast Cancer Action in December; her last blog post was just a couple of short weeks ago.

And now she's gone. You can read the amazing story of her life here.

I created a "We'll Never Forget" section on my blog. It wasn't my idea. I'd seen it done by other bloggers. I just never wanted to have to do it. But I have one now. It's a place our fallen angels can now rest in the blogosphere.

Rachel was not the first to fall silent.

Cheryl, of Indigo Dreaming blogging fame, passed away in mid-January. Cheryl lived in Australia and battled secondary breast cancer and was also a very brave and upbeat gal; you can read about her story here and also here. (Thanks, Alli and Julie.)

But the first to die, for me, was Lynn — age 50, who passed from metastatic breast cancer on December 29, 2011. Lynn's husband was the blogger in the family, and he wrote (and continues to write) with great heart and compassion about his experience as caregiver of a BC patient. He is now a husband without a wife; a father of two children who are now without a mother. You can find Lynn's story (and that of her husband and family) here.

I wish my list didn't exist. A virtual graveyard is not what I had in mind when I stepped into the design section of Blogger. But it is a brutal reality of breast cancer.

So what can we do about it? Stay educated about cancer. Live a clean life. Donate time (or funds) to organizations that you have vetted and are confident will make the most of your donation.

And keep laughing. Find the humor in life. That's something Lynn and Rachel did in spades.

Rest in peace, pretty ladies.

PULLING THE PLUG ON PINK

The general public has finally kicked Komen off their pink pedestal.

Last week, I blogged about the brouhaha brewing in the breast cancer community over the commercialization of Komen. I also mentioned the Canadian documentary about Komen called Pink Ribbons, Inc., that is making its debut today — the same day the pink dust has settled following Komen's Planned Parenthood firestorm. (It also happens to be the one-year anniversary of my bilateral mastectomy, or my "surgiversary," as I like to call it — but I digress.)

That's what I call a tipping point. Because for the first time, everyone everywhere can glimpse a Komen that can no longer hide behind its frilly pink curtains.

As you know, Komen partners with a gazillion companies, lending their name to a ton of products, all sold under the pink umbrella. As a consumer, I buy a yogurt (not organic, BTW) with a pink ribbon on it, thinking I'm doing good — only to later learn I must mail the lid back to the yogurt company before they make a contribution to Komen. The yogurt company makes money off of me, and then donates a few cents of said made money to Komen, getting a tax break in return. Sweet deal all around. The kicker, though: Many companies place a ceiling on how much moola they donate, so even though you buy a "pink" product, no money may go to Komen at all if said company has met its donation quota. That is a bummer.

But don't feel too bad for Komen. They earn mega money regardless, though just $650,000 was earmarked for screening exams for low-income women over at Planned Parenthood. And for that there is an uproar... and political pressure... which caused Komen to cave but then they rescind and say they'll continue to fund some PP breast screening programs (for fear of losing liberal dollars). At least for now. Even though breast cancer is an equal-opportunity employer.

Oy, I have a headache.

I don't know about you, but I think the time has come for the charity that is raking in the biggest bucks (ahem, Komen) to use that fat leather wallet not just for good, but to make good. Finding breast cancer is the first step, but it's not the only step. It's what comes after finding breast cancer that is most troubling. Komen, we really need your money to go all in towards research that figures out why we are getting breast cancer in the first place. Why is it so epidemic? Why is it striking younger and younger women? Why, with all this "awareness," are people still so in the dark about the disease? We also really need your money to find better treatments for those who already have BC (including our metastatic sisters, please; for more on blogger Katherine's opinion on that, see her post here).

What we don't need is more "awareness." We don't need more pink marches with people raising money that goes towards funding more pink marches. We are all too aware, Komen. The awareness baton has been passed. It's time to pull the plug on pink — and get to work.

And on that note, I leave you with an image I captured as I hiked up a new hill this afternoon to celebrate my one-year surgiversary.

I purposefully choose a different path to the top today; I hope Komen does, too. Because actions speak louder than pink.