WANDA, CHRISTINA AND ME

One of the many benefits (OK, I threw in the word 'many' for affect) of having breast cancer is that I am thrust into a world I would never have been interested in before... the wonderful world of breast cancer bloggers. These women (and a few men) are fighting the good fight and writing about it every step of the way. They may not all be professional writers — but they could be. They are witty and wise wordsmiths; their blogs, a pleasure to read. The discourse that arises on the screen is often cutting edge, and unlike anything you are going to read anywhere else.

To wit: This morning I read a fabulous post by blogger Katherine over at ihatebreastcancer discussing the announcement by the amazing Wanda Sykes on Monday that she was diagnosed with DCIS (ductal carcinoma in situ). Wanda is one of the funniest comics out there, and this news is devastating.

Wanda talked about her breast cancer publicly for the first time on "The Ellen DeGeneres Show" and shared how her cancer was discovered — while undergoing breast reduction surgery, of all things. Though her cancer was caught early (Stage 0), she opted for bilateral mastectomy due to her family history; as Wanda explained, "Cancer is cancer." This is true. But then she went on to say the words that have the breast cancer blogosphere buzzing: "Because now I have zero chance of having breast cancer." And Ellen agreed. But that would not be true. (The zero chance part, that is.)

(Courtesy Warner Bros.)

I'm joining blogger Katherine in being "Cliff Clavin"-esque here because Wanda and Ellen's comments eerily remind me of Andrea Mitchell's comments earlier in September when Andrea was also diagnosed. Andrea stated, "This disease [breast cancer] can be completely curable if you find it at the right time."

Here's the real deal: Whether they have a lumpectomy — a la Andrea Mitchell and Sheryl Crow — or bilateral mastectomy like Wanda Sykes, Christina Applegate and me (gotta throw myself in here, since this is the only time I'll be able to mention my name along with theirs and have it make sense!), when people in the media say they are "cured," they do us all a grave (pardon the pun) disservice because it simply isn't factual. It just isn't true. And it gives people false hope — not just the patients that breast cancer afflicts, but the friends and family of BC'ers too. Catch breast cancer in its early stages and your chances of staying cancer-free are certainly high — but they are never 100%. Ever.

What Wanda, Christina and I (and so many of my BC buddies) bravely did by getting bilateral mastectomies (though our cancers were found in just one breast) is still considered controversial. But that is not the point of this post.

Instead, I want to address the issue of why public figures feel the need to downplay a cancer diagnosis.

I'm pretty sure I know why they do it: Because they are afraid they won't be hired again unless they say they are "cured."

Would it be better if Wanda had said, "Yes, I found my breast cancer early and yes, I had both my breasts removed and yes, my cancer can still come back at any time and kill me"? Abso-f-ing-lutely.

But I also understand why she didn't say that. Part of it is the natural desire we all have to believe we are cured. I get that. But the other part is just as important: She has to worry about her (and her family's) financial future. Just as we all do. Just as we all don't walk straight into our bosses offices and announce that yes, we have breast cancer and yes, we might die. Because if we did, we probably wouldn't be getting that next promotion. That next opportunity. That next big gig. And so we downplay. To ease others' fears — and to ease our own.

It's a gnarly little line that people in the public eye must walk in order to save face. And we already know which side they are gonna take. The side they must: They have to save themselves first. After all (and this isn't the first time I have said this and it certainly won't be the last): They are only human. And trying to keep everything as normal as possible for as long as possible. (Can anyone relate?)

So I'm gonna cut Wanda a wide swath of slack. But I'm also gonna make sure I talk about all this. It is up to us (the "foot soldiers," as the Army of Women calls us) to get the word out and not be under any illusions that bilateral mastectomy is "the cure." Not trying to be a Debbie Downer here; just Renn the Realist.

Maybe at some point down the line, a high-profile personality will pick up a bullhorn when they are first diagnosed with cancer and tell it like it really is. But until that day happens, I'm not gonna hold my breath. I'm just gonna blog about it.

HEALING AND DEALING

There is a phenomenon that happens post-surgery, when you’re back at home and cozy in your jammies, trying to heal and deal with your new self-image (whatever that may be, depending upon how severe your surgery). In the case of mastectomy, it presents itself as a layer of hiding. Make that multi-layers of hiding. And this hiding has little to do with whether or not you have started the reconstruction process.

The first layer of hiding is from myself — and any mirrors that may reflect back to me an image I’m not yet ready to behold. I steer clear of all reflective surfaces for the time being.

Next there is hiding from my husband, lest he find me newly unattractive. I feel the need to spare him — and myself — from this moment for as long as possible. This second layer of hiding is easily handled, on the surface, at least, by donning a bathrobe selected for just such a non-veiling (vs. unveiling) occasion. In my case, that would be putting on the pale green robe my husband purchased (unbeknownst to me) while we were vacationing in the Oregon wine country last fall. A trip that will forever be sandwiched between “The Mammogram” and “The 'Come Back' Letter." Imagine my surprise when I found said robe beneath the tree on Christmas morning! That was divine. But it will always be remembered as the Christmas that came after “The Biopsy,” after “The Call,” before "The Surgery."

But wait, there's more: Post-cancer surgery offers up a third layer of hiding, wrapped in the form of friends and/or family — yup, the very people who are your lifeline, your safety net, your thread back to the jacket of normalcy you wore before cancer unraveled everything. They phone or text or email or drop by in an ebb and flow of checking in, checking up, and checking out. It’s all good — except when it’s not.

• The “checking in” part is great! I can handle that easy enough by text or email.

• The “checking up” chats I leave to my husband. Those require more verbal acuity than I have the energy to muster at the moment.

• It’s the “checking outs” that are the most difficult to decipher —and to deal with. I’m not talking about the “eyeball” type of checking out you might expect when people first glance at a newly deflated chest. (That is another post for another time.) I’m talking about complete checkouts of the unexpected and puzzling variety. As in: The calls that never come. The cards that are never mailed. The flowers that don't get delivered.

Don't get me wrong; I am grateful — very grateful — for the kindness shown to (and showered upon) me during these dark and dismal days. But allow me a moment if you will. Complete Checkouts are the people who can’t deal with your cancer — or your vulnerability. They don’t know what to say. They don't know what to do. And so they do nothing — mistakenly thinking that no contact is good contact — or at least better than awkward contact. 

But they would be wrong. Because reaching out in whatever way is comfortable for you means so much to me! Aside from making me (and every person I know who has gone through the BC experience — and it happens to the majority of us) feel ignored and unloved during one of the most challenging times of my life (and let's not even draw the correlation between cancer and death, another subject that renders people silent), here's the really troubling part: Complete Checkouts turn out to be the people you least expect. And they are stealth.

And that, folks, is the dirty little secret of a cancer diagnosis.

Complete Checkouts can make a girl feel like doing a little checking out of her own. (Not in a “I want to die” kind of way, just in a “go away” kind of way.) So that's what I do. Within the plush folds of my velvety robe, I find my safe harbor and my escape. It’s my own Amazing Technicolor Dreamcoat. I slip it on and slip back into the land of yesterday, when my boobs weren’t called foobs and I didn't look like a cross between Barbie and the game Operation.

Still healing and dealing and hiding over here. This could take a while.

ARMY OF WOMEN

Thanks to Dr. Susan Love's Research Foundation and the amazing Army of Women, there are oodles of ongoing opportunities to participate in cutting-edge research. I'm highlighting a few noninvasive studies for you to consider participating in if you meet eligibility requirements. There is even one listed here for ladies who don't have cancer. Click the links below for more details. (These studies are time-sensitive, so if interested, get in touch right away. If they're not right for you but for someone you know: share, share, share!) 

DCIS AND BRCA STUDY If you've been diagnosed with DCIS, have a known BRCA mutation, and are over age 20, this research study may be for you. The best part: They are recruiting women from all over the world. 

ENERGY STUDY The "Exercise and Nutrition to Enhance Recovery and Good Health for You" (ENERGY) study will analyze the effects of diet and exercise on overweight breast cancer survivors. Women must live near the following locations: San Diego, CA; St. Louis, MO; Birmingham, AL; and Denver, CO. 
HOT FLASH STUDY The "Interventions for Relief of Menopausal Symptoms: A 3-by-2 Factorial Design Examining Yoga, Exercise, and Omega-3 Supplementation" study needs women near Seattle, WA — cancer NOT required! — who are between the ages of 40 and 62, peri- or postmenopausal, suffer from hot flashes and not on Tamoxifen or other hormone treatment.

JEWELS IN OUR GENES STUDY aims to understand if there are undiscovered genes unique to African Americans that may predict early breast cancer risk. The "Jewels in Our Genes" study is looking for black women over age 18 who have been diagnosed with breast cancer and reside anywhere in the USA. 

MEDITATION STUDY If you live near Los Angeles, CA, and were diagnosed with breast cancer after 2001 but before age 50, you may be eligible to participate in a "Mindfulness Meditation-Based Intervention for Younger Breast Cancer Survivors" study.

YOGA STUDY The "Yoga for Breast Cancer Survivors: Effects on Fatigue, Immune Function, and Mood" study needs ladies who live near Columbus, OH, for a research project studying the effects of yoga on (you guessed it) fatigue, immune function and mood.
YOUNG BREAST CANCER STUDY The purpose of the "Breast Cancer Risk in Young Women" study is to learn what role genetic factors may play in the development of breast cancer in younger women. Currently recruiting 5,000 females diagnosed with invasive breast cancer at age 40 or younger who live anywhere in Canada or the United States.

(© Army of Women )

DOUBLE DIPPING

Coming home from a bilateral mastectomy is an event — not of the red-carpet, Oscar-worthy variety, but an event none-the-less. I was happy just to smell fresh air, see the sun, sit in traffic. I was going home.

And that's when the party got into full swing. No guests yet (just our two furry barking machines). And yup, a few pretty floral arrangements. But what I was most stoked about were all the accoutrements on my bedside table (see Step No. 5 for post-surgery boudoir table tips). Snacking in bed? Never do it, but bring it on! Watching TV while the sun is still out and I’m still under the covers? (Yeah, baby!) Pain medication? (Par-tay!) Remote control all to myself? YES! Husband feeding me because I can’t use my arms or bear any weight? (OK, that one didn’t actually happen.) But it was a comical side show just getting me in the bed (forget about getting me out of it to use the bathroom). I’m tired just thinking about it.

Lucky girl that I am, Husband has taken two weeks off from work to take care of me. He’s even placed a bell on the nightstand should I need anything. I rang it once. He didn't hear it. Well. It's. The. Thought. Right?

What I remember most about those first few days home were all the odd sensations. I felt supremely uncomfortable. Frustrated. Sweaty. And smelly. And I can’t take a shower until my drains come out. Have I mentioned my lovely drains? Allow me to paint the picture again ('cause they're just so dang much fun). I’ve got four thick-like-a-straw tubes hanging off me, and they each connect to a bulb into which fluid drains. I preemptively bought a Marsupial pouch belt (see Step No. 7), which was an awesome solution: I tuck two bulbs into one soft terrycloth pocket, two bulbs into the other, and my pain pack in the pouch in the middle. (Bought four pouches but only use three on the belt). Oh what a sight. (See purty picture above.)

Husband has been tasked with emptying said drains and measuring their fluid outtake. Actually, he volunteered. (I think.) He’s normally a little squeamish but is handling the drains with surprising aplomb. I won’t go into further detail because, quite frankly, they are icky and gross and I’d rather not relive it. You can thank me now.

Am I in pain? Yes, but mainly because of the drains. They are poking out of my sides. They hurt more than the mastectomy (my pain pouch is working its magic there). I guess the worst part of it all, so far, is the pressure I feel, which can only be described as this: Imagine having two coconut shells (sans the hairy stuff) wired to your chest wall. Then imagine being engulfed in gauze and zipped into a very [un]sexy compression vest. And then wrapped up some more in a fat ace bandage. It's freakin' weird.

(Copyright ©2011 Rennasus)

Because of (or despite) all this, and because I am a good and compliant patient, I take my meds right on the button. And since I am married to a pharmacist, that means he has the pill deal covered. He delivers my capsules and tablets bedside (though I like to imagine it more as poolside), with a glass of water, exactly at the time I need to take them.

But he neglects to tell me ahead of time that this is The Plan.

Now normally upon awakening, I do what I always do: I take a Synthroid tablet. Which is exactly what I do my first morning home. (Remember, I am unaware of The Plan.) Husband hears me stirring and comes in right away to check how I'm feeling. I don't even see him counting out pills; but he folds a few into my hand and gives me a glass of water. I notice there are some different pills in the pile (pain meds and Colace and such) than I normally take. Unfortunately, I don't notice that there also is a Synthroid tablet. In my post-anesthesia brain fog, one plus one only equals one.

So. Yup. Took a double dose of Synthroid. That is not recommended. By the time I realize I've taken mine and his, it's too late. I do have a bit of an emotional meltdown thinking I've just tried to kill myself, but Husband assures me that I will not die from taking two. (I may feel a little warm and fidgety, however. And he would be correct.)

I spend the remainder of the day in a hot flash haze, wearing washcloths dipped in ice water as scarves. And yes, I felt revved. But I also slept a lot. By evening, my double-dipping had worn off.

I stopped worrying about taking my meds after that. Decided I would leave that up to the professional. I just relaxed and became [a] patient.