RENN'S TOP 20 BLOGGY IDEAS

(Copyright © 2013 The Big C and Me)  

While I've been busy not blogging, I've been amassing a large number of potential blog posts. Some are half written; others are merely a headline. Some describe experiences I've had yesterday; others occurred long ago. All include insight gleaned from my breast cancer experience. 

This bulging list of ideas overwhelms me...

SNAKES AND BREAST CANCER

DAY 8 of the WEGO #HAWMC asks: "If your health condition was an animal, what would it be?" A snake comes immediately to mind; specifically, a timber rattlesnake — aptly named C. Horridus. (I found that so apropos!)

This is a California rattler.

My 8 reasons why rattlesnakes remind me of breast cancer...

BLOG ENVY

Three things happened this week that birthed this blog post.

First, I was catching up on my blog reading when I checked in on Jan from Mourning Has Broken; her post title caught my eye. By the time I was done reading it, my emotions had run the gamut. She had shared a secret she'd been harboring for years, and was so brave in revealing her truth that I couldn't comment quickly enough! This is what I wrote:

• "When I first started reading this post and saw the words “blog party,” I thought oh, this is going to be a funny post. As I started reading I realized it was serious — but I thought you were telling the story of the girl in the video. THEN I finally realized you were telling your own story. And then I watched the video. And now I want to give you a great big hug and say you are AWESOME and brave and amazing for sharing your secret! So proud of you!! And so sorry you have suffered with this disorder on top of suffering with BC and lymphedema. It ain’t fair. Truth be told I think we all have idiosyncratic behaviors that we use to keep our anxieties at bay. Some people drink too much. Some eat too much (as you have described). Some have compulsive routines that bring a measure of calm to a very topsy turvy world. Some are hooked into being drama queens. Some people exercise too much. Oh, the list goes on. The important thing to know is that we’re all just trying to cope. And you are definitely not alone. I suspect you have helped more than one person with your sharing today. Good on you!"

That's a cancer surviver for you: Strong, brave, and not afraid to tell the truth. (To read Jan's revealing post, click here.) I continued on with my blog reading.

Next, I popped in and out of a number of blogs (you know how that goes: One blog leads to another, and another...) before I landed on a sweet little one that (again) caught my eye: "Things I'm afraid to tell you." Intriguing title. Sounds like what Jan just did. I keep reading.

I quickly learn that blogging has gotten too pretty, too perfect, and too polished (not my words, but those of other writers). In fact, a movement is underway to bring more honesty to the blogosphere. 

More honesty? Really? Again, I think of Jan's post. And I keep reading: A group of bloggers have challenged each other to be more authentic by writing about the stuff they don't normally discuss on their blogs. You know, the things they are afraid to tell you.

As I'm sure you guessed by now, these are not cancer bloggers. 
So what's this 'movement' all about? Blog envy. It's (apparently) a real thing. Bloggers see beautiful things on other beautiful sites and have a misperception that the blogger has a beautiful life too — free from the many things that make us all human. Bloggers want to see that their fellow bloggers aren't perfect.
Well come on over to Cancerland! I'll show you a community of bloggers that is not shy about sharing its dirty laundry. Heck, it's why we're here in the first place! Our blogs are our attempt to make sense out of cancer, purging our minds of the darkness that hides within its cracks and crannies. 

Yes, I had a good laugh at the humor of it all. But don't get me wrong — I mean no disrespect to anyone out there who is blogging about something other than cancer. (Talk about blog envy — I wish I wrote about travel, not tissue expanders!) We need those kinds of blogs too: The ones focused on the pretty things, the ones we go to in order to forget (for a moment, anyway) our troubles. They're all important. It's just that I had no idea that "blog envy" existed. 'cause I have never felt it. So I decided to leave a comment. And here is what I wrote:

• "This is my first time visiting your blog (I followed a link to 'Things I'm afraid to tell you' and landed here). I feel compelled to leave you a post. I started blogging after a breast cancer diagnosis, and honesty is the backbone of my little corner of the blogosphere. I am stitched into a supportive, witty community of cancer survivors who tell it like it is every single day. No holds barred over there. No one afraid to tell their truth. There is transparency aplenty. And talent. And humor! Lots of humor. Really. But I had no idea that it wasn't like that in other web niches. Never really thought about it before. Kinda having an AHA moment over here — seeing a benefit to cancer I never noticed before. Thank you!"

I felt a great deal of honesty and transparency in leaving my comment. Maybe one person will check out my blog and discover some of your blogs too. We never know the ripple effect that one toe in the water can create. (Ever hopeful am I.)

Lastly, I read a brilliant post by Suleika Jaouad, who writes a column in The New York Times about her experience as a young adult with cancer (in Suleika's case, it is acute myeloid leukemia). The title of her article also caught my eye: "Posting Your Cancer on Facebook."

Whoa. Talk about truth telling. I don't share in that way on Facebook. That's my cancer-free zone. I'm just not comfortable talking about all my 'stuff' to all my peeps when all of them probably don't really want to know all the gorey details. That's why I have this blog. If you are a regular reader, you're not afraid of my truth or my cancer. And that makes me feel safe. Facebook does not feel safe to me in that regard.

Suleika was deep into chemo when she decided to finally "come clean" on Facebook. She writes that it felt "inauthentic, even dishonest" that her FB profile did not reflect her current reality as a cancer patient. I have to give her props; I'm just not ready to do it. 

And that's not blog envy. That's just the truth.

(To read Suleika's revealing post, click here.)

Amended to add: The Huffington Post has picked up on this "truth-telling" phenomenon (aka, TIATTY). OY. Too bad no one mentions cancer bloggers...

OUR LADY WITH CANCER

It's Day 25 of the WEGO Health Activist Writer's Month Challenge and I'm to tell you a memory — but I have to write it in the third person. Here goes!

There is a woman, a very private woman (let's call her "Our Lady With Cancer") who felt oddly ignored during and after her breast cancer "experience." And it seems Our Lady With Cancer brought it all on herself. How so? In choosing not to tell everyone on earth about her diagnosis, she cut off a large lifeline of people that could have made her journey so much easier. 

You see, coming out publicly about having cancer is not in Our Lady With Cancer's blood. She is diligent about keeping references to her health off of Facebook. To her "friends" not in the know, they would never know what she is really going through. And that's the way she likes it. She continues to post pretty pictures and comment on others' FB posts, but she keeps the biggest secret of her life to herself — an attempt at controlling an uncontrollable beast.

She tells the people who need to know — the people she is closest to, her family, the folks she trusts. But she can't handle the thought of being talked about or rejected during this very vulnerable time. So she continues to keep "it" quiet.

She also tells a select few people who are large cogs in her social wheel... people she knows will get the word out. She doesn't want to have to say "I have cancer" too many times. She knows if she turns on the faucet, they will come to the trough.

So it comes as quite a shock when Our Lady With Cancer's pool of support slowly dries up in the weeks and months following her bilateral mastectomy. Though she doesn't talk about "it" on Facebook, she is still surprised when no one addresses her dance with cancer — publicly or privately.

Even members of her extended family are strangely silent. How can this be? She imagines how some would handle a cancer diagnosis — how it would be all they talked about, every detail dripping in drama, drama, drama.

Well, be careful what you wish for, Our Lady With Cancer: You never wanted too much attention, and so you never got it. Our Lady begins to question her worth as a friend, a family member, a patient, a human being in need. She struggles with asking for help when help has never been offered in the first place. The fear of rejection is stifling her vulnerability. 

One day she goes to lunch with a friend (who is also friends with one of the "cogs") and is shocked to learn said friend doesn't know she has cancer. WTF? Our Lady With Cancer emails another former friend — and finds that person similarly shocked. Turns out the cog has kept quiet — respecting the very privacy that is so beloved by Our Lady With Cancer. (Well, what do you know about that!)

Our Lady With Cancer attends a baby shower. The room is packed with people. She decides not to keep "it" a secret any longer. She will openly and gladly talk about her breast cancer experience with anyone at the party who asks. Yet, remarkably, no one does.

But this time, she is not silenced. Our Lady With Cancer brings "it" up. She shocks many in the room that day. Jaws drop left and right. She talks about her fears, her cancer, her reconstruction. In fact, cancer is all she talks about. When she leaves the party, it is with a newfound (and hard-won) freedom. And a lightness of being. An almost unbearable lightness of being.

Now Our Lady With Cancer mentions "it" whenever it is appropriate. On the hiking trail, she falls into conversation with another hiker and tells him she is recovering from breast cancer surgery; he in turn tells her about a close friend with breast cancer who just completed the Ironman. At a farmer's market, Our Lady With Cancer asks for help to her car because she cannot carry heavy bags after her double mastectomy; the woman helping her reveals her own battle with stomach cancer. Our Lady With Cancer is no longer afraid to talk about cancer. And she realizes an old school truth: People are not talking about her. They are not focused on her. They are focused on themselves.

After a friend is diagnosed, Our Lady With Cancer emails — expressing concern and revealing her own cancer. The woman writes back, "Yes, I know. I heard." Our Lady With Cancer understands that people do not always know what to say to people who have cancer. Especially private people who have cancer.

OPERATION WIG-OUT

Couldn’t fall asleep last night. Can’t shut off my mind. I started reading Living Through Breast Cancer (Carolyn M. Kaelin, M.D.); wish I'd been leafing through it from the moment I got my diagnosis (rather than waiting an entire month). But I guess I wasn’t ready. There is so much to know, to remember — and it all falls to me to figure out.

It's been five days since my meeting with the surgeon when the phone rings. It's Dr. A.'s nurse; she is absolutely thrilled to tell me that she has scheduled me for surgery on Wednesday. She starts rattling off the details when I interrupt her. 

         What? Wednesday when? 
         "THIS Wednesday." 
         You mean two-days-from-now Wednesday? As in the day after tomorrow? Like in 48 hours? WHOA. This is way too fast.
         The nurse is so not happy. "Do you know what I just went through to get you on the schedule this soon?" 
         But what about seeing my internist to get cleared for surgery? What about my blood work? My EKG? My chest X-ray? How can I get all that done in two days? 
          The pitch in my voice is crescendoing, and this catches the attention of my husband. I look up to find him standing in the doorway of my office. He can see the utter terror in my eyes. He calmly takes the cell phone away from me, tells the nurse that, in fact, this week is definitely not good for us, and we would like to reschedule for next Tuesday, Wednesday or Thursday please.

Amazing. He is my hero. The nurse says she will get back to us. I hope against hope that she can change the surgery date.

I should be relieved, right? But no, I'm wigging out. I'm absolutely not mentally prepared to have surgery in two days — especially since NO ONE IN MY FAMILY KNOWS I HAVE BREAST CANCER YET!! Oy. I am amped up; I need to calm down. I go for a 90-minute hike with a dear friend I've known since grade school and tell her all the dirty details before the sun goes down.

The following morning, I decide it's finally time to 'fess up. I take my mother to get our nails done. When we return home, I sit her down at the kitchen table and over a glass of iced tea casually mention that I have a “health issue.” And then I tell her my story (just the highlights, not the scary parts), focusing on the positives (the cancer is slow growing, estrogen/progesterone positive, HER-2 negative). She is upset, of course, and tears well up, but she doesn't cry. She is strong. I only choke up when I tell her how the doctor broke the news to me — he did it over the phone.

I had put off this conversation for so long because I was afraid she wouldn't be able to handle it. But in all honesty, I was afraid I couldn't handle it. The funny thing is, my mother really would have been OK if I had waited to tell her until after I had my surgery. I had to tell her for me. I am just so relieved she finally knows the truth. Keeping this secret has been sapping my energy. And I can't afford to give any of it away.

Next up: Family History.

DR. A. & DR. J.

I have a second appointment with a surgeon at the cancer center. I walk in and immediately feel I don’t belong. There are old people everywhere; patients waiting with adult children or grandchildren or young “nurses.” Only one other couple looks to be around my age; her husband is filling out her forms. She looks anxious. First timer. Just like me.

My husband and I wait an hour; Dr. A. finally enters the examining room just as my cell phone rings. It's my mom. I haven't told her I have cancer yet. I tell her I can’t talk. Now I’m spooked. (She has exceptional intuition, my mother.) 

Dr. A. patiently explains the procedure he will do for me to remove my cancerous mass: a lumpectomy. He'll also be doing a sentinel node biopsy to determine if my cancer has moved into my lymphatic system. Breast cancer spreads via the lymph nodes; during surgery, a blue dye is injected near the cancerous tumor, and the sentinel, or first, lymph node that takes up the dye is removed and examined under a microscope. If the sentinel node tests positive, that means my cancer has spread and Dr. A. will take out additional lymph nodes. And that also means I’ll need chemo. (Note to self: If my right arm hurts upon awakening from surgery, it's not good news.)

Since I have family history (my sister had breast cancer at the age of 31), Dr. A. asks if I have had a BRCA — the DNA test that analyzes mutations in a pair of genes responsible for some breast cancers. Yes, I tell him, and I should hear back in a few weeks. He is pleased but stresses that I shouldn’t wait until I get the BRCA results back; I should schedule the surgery as soon as I can, to "get it out of there." He’s right. It's been more than three months since I had the "bad" mammogram. I need to get it out of there.

Dr. A. has answered my dozens of questions patiently, thoughtfully. I trust him and want him to be my surgeon. I talk to one of his nurses about setting up a date for my lumpectomy.  She explains they need approval from my insurance company before I can be put on the schedule and this could take a couple of weeks. I leave not knowing exactly when surgery will be, but happy to at least have a plan. Having a plan means having control.

After our consult, a social worker asks if have any questions for her. Uh, how do I know what I’ll need emotionally when I haven’t gone through anything but anxiety yet? My BP is good upon arrival (125/75); but I can only imagine what it is now. I take her card.

On our way out, we run into a physician that my husband knows very well. This is awkward. Dr. J. is one of the doctors who treated my husband’s late wife for breast cancer. So there is a lot of history here. Since I have taken such great pains to keep my diagnosis from everyone, I am absolutely terror-stricken that my news will now be leaked — and not by me. 

But we try and play it cool, my husband and I. Dr. J asks us twice: How is everything, how is the family? We nod fine, fine. But it is obvious things are not fine. Pause. My husband fesses up: "We’re here because she has breast cancer." I quickly add, "and we haven’t told anyone yet.” Then the tears come. Dr. J. tells me not to worry, he won't say a word. Doctors are supposed to keep these things secret, right? Yet I know in my heart of hearts he will go home tonight and tell his wife that my poor husband now has had two wives with breast cancer.

By the time we get into the fresh air my head is pounding and I am starving. We head to a deli for a bite to eat. 

On the drive over, I call my mother but avoid talking about where I just was. (I will tell her soon enough, just not on the phone.) My husband and I sit down in a booth at the back of the restaurant, and I order cabbage soup and half a corned beef sandwich. My husband puts his hand on mine, a tender gesture. I pull away. "Don’t!" I snap at him. "I’ll start crying and I don’t want to lose it right now!" I hold it together but do a lot of staring off into space during lunch.

We get home at 3 PM. I put on my pajamas, close the blinds, crawl into bed with my dogs and watch House Hunters for 2 hours. Then I fell deeply asleep.

This is getting real now. 

My time is no longer free. 

I fear this cancer has spread. 

I don’t want to lose my hair. 

I can handle pain but I’m getting afraid. 

I tell myself to be glad for moments of happiness and fun and clear thinking — they help offset the ugliness that I know will bring me down if I'm not balanced.

I’m trying very hard to level the playing field.

(See Operation Wigout for the next installment.)

ISLE OF DENIAL

Immediately after my breast cancer diagnosis in December 2010, I become stuck in the “Making-Medical-Appointments-Around-the-Holidays” mire. Unable to get in to see any physicians until early January, I have no choice but to get back on the train to nowhere. And so my husband and I decide not to tell anyone (aside from my two girlfriends) about my diagnosis. Friends and family will just ask lots of questions and we won’t have any answers. Better to wait until we know more. Besides, we don’t want to wreck everyone’s Christmas. Bad enough we have to wreck our own. We'll just keep it all a secret.

I had never spent a holiday on the Isle of Denial before. It wasn’t so bad; kind of like a honeymoon phase. I tell myself there will be plenty of time to deal with everything cancer-related soon enough. So I wrap presents and bake cookies and decorate the Christmas tree just like every year. But I’m not sleeping well. I get up at 3AM, listen for the rain and make Peppermint Pinwheels. Then I study the biomarkers in my pathology report, looking to make molehills out of mountains.

But what I oddly don’t do is any further research, which is not like me. My head seems firmly stuck in the sand. I don’t investigate the findings on my pathology report beyond what I already know to be true: I have IDC (invasive ductal carcinoma); it’s ER/PR+ 95% (estrogen and progesterone receptor positive, meaning the cancer is being fed by my hormones, so taking the premenopausal drug Tamoxifen will suppress this estrogen and interfere with it's ability to stimulate the growth of breast cancer cells); I am HER-2 negative (good because HER-2 positive cancers tend to be more aggressive). And my Nottingham Score — a common tumor grading system — is 5 out of 9. These stats simply confirm what my Dr. S. has already told me: that my cancer is likely slow growing. So I really don’t think about “it” that much. I try to continue to forget “it.” 

And I try to find some semblance of peace on the merry 'ole Isle of Denial.

(See New Year and Ditching Control for what happens next.)

CANCER CLUB (Part II)

Biopsy day arrives. The radiologist is right. It doesn't hurt! She takes four separate tissue samples using a large core needle that makes a clicking sound each time it captures my flesh. She comments on how relaxed I am, that I'm "in the zone." Wait a minute. Am I supposed to be "in the zone"? Why am I IN THE ZONE? As I lay on the exam table, I begin to realize this whole thing may be a bit more serious than I have allowed myself to believe. So I formulate a few questions to ask the radiologist when she returns to the room.

But she never does. 

Instead, the technician hands me an ice pack which I am to use 20 minutes on, 20 minutes off. She also mentions that I will be hearing the pathology results directly from my primary care physician — not the imaging center. I know this is code for "I'm sorry you are about to go out of your mind with worry while you wait days and days and days until you finally get your results but please don't call us, we can't tell you anything." Suddenly I am scared.

I decide to share my concern with two close friends, one on the east coast, one on the west. Both listen and calm me and tell me they are sure it is nothing at all. We make a pact, the three of us: No news is good news. “I'll call only if it's bad news," I say.

That evening, when my husband comes home from work, he finds me lying on the couch watching TV,  a thick scarf loosely draped around my neck to hide the ice pack still inside my bra. He suspects nothing. (I figure if this turns ugly, there will be plenty of time to tell him something.)

But I'm starting to act weird. I jump when the phone rings. I don't feel comfortable keeping this from him just to save him the worry. So the night before I find out my fate, I share my little secret. He is nonreactive, yet concerned. He says he is glad I waited to tell him. And it would have been OK too if I had waited until I actually knew. (Do I know my husband or what?)  

As expected, it takes days before the phone finally rings. My primary physician, Dr. S., is a very friendly, upbeat man, and I'm certain I'll hear it in the tone of his voice if the results are not what I am expecting. So I am thrilled when I pick up the phone and find his joyful voice on the other end.

Him: "Well, I have your test results!" 

Me: "Yea! I am so glad."  I slide my relieved body into the kitchen chair.

Him: "Unfortunately, it IS cancer." 

Me (long pause): "I was not expecting that."  Uh, wow.

He starts to rattle off preliminary findings as the hair on the back of my neck stands up. My face becomes flush. My hand shakes as I jot down the few words I manage to hear through the verbal assault that is pummeling my brain.

"Invasive ductal carcinoma." (It's the most common type of breast cancer; that's a good thing because the medical community has a lot of experience treating it.)

"Well differentiated." (Sounds bad, but generally means slow growing, so that's also good.) 

"Not a tumor." (It's a mass that looks like breast tissue but has cancer cells in it. That's also good. Still, I can't help but think of Arnold in Kindergarten Cop... It's not a tuma!)

"One inch in size." That's just an estimate. I will need a lumpectomy and a lymph node biopsy to know for sure what we are dealing with. 

I don't remember anything else, except telling Dr. S. that we can talk more about all this tomorrow — because, odd as it may seem, I had an appointment for a general checkup with him the very next morning. An appointment I made three months ago. Before any of this started.

Do do do do. Do do do do. (See Curtain of Dread to continue with my story.)

RELATED POSTS

• Cancer Club (Part I)
• Telling Hubby 
• Isle of Denial