TELLING HUBBY

Good news travels fast. Bad news travels faster. Especially when it comes to cancer. The words tumble like rocks on a thin, plate-glass window. First it shatters your life, then its shards shatter the lives of those around you.

My breast cancer news doesn't need micromanaging, it needs entrusting — to three key players: My husband, my mother and one girlfriend. The game plan is to have my husband tell our 'couple' friends. My mom will tell our family. My friend will tell my other friends.

But I can't call my husband at work and tell him I have breast cancer. I just can't. Because his first wife also had breast cancer. They spent 10 years fighting it. She left behind a grieving family. How can I possibly break the news that I have breast cancer, too?

We sit down for dinner and I nervously wait for him to ask if Dr. S. has called — he knows today is the day I'm supposed to hear back about my biopsy, and this is my opening to start "the conversation." But my husband doesn't ask! We are still clinging mightily to the Isle of Denial. So halfway through whatever it is we're eating (probably salad but I really can't recall), the wait is too much for me to bear. I blurt it out: "I got the call." I look up from my plate and look him straight in the eye as I say, "It's Cancer." Then I start to cry, the kind of cry that comes from the bottom of your being. The kind of cry associated with death.

My husband, who has quite a honed sense of intuition for a guy, oddly doesn't bat an eye. He calmly tells me he knew the minute I told him that I had had a biopsy that it would come back cancerous. (Don't ask me how he knew, he just did.) Thankfully he did not share those feelings with me then.

The next few minutes are a blur: tears (mine) coupled with quiet absorption (him). I can't help but notice how unruffled his composure is — he seems detached. What is that about?

Oh, right. He's been down this road before.

(copyright 2011 TheBigCandMe)

And that is both the blessing and the curse. A curse for obvious reasons: What are the odds of one wonderful man having two wives who wind up with breast cancer? (I was initially more upset that he had to go through this a second time than I was about going through it myself.) And a blessing because he is not terrified of my diagnosis. He has a vast, multidimensional knowledge base of this disease from which to draw, and he has to believe things will get better — for his own emotional health, as well as mine.

So here's what he says to stop my crying: "It's different this time. You caught it early. You are not going to die from this." And I believe him. I have to. Like I said, he's very intuitive.

Telling hubby? Turned out to be pretty easy. Telling everyone else? Not so much. 

(See Isle of Denial for more.)

NEW YEAR

I began this blog several months into my journey with breast cancer. Didn't feel like talking about it (much less writing about it) back then. And as I've mentioned in posts prior, my husband and I kept the news to ourselves until January. We hurried through the Christmas holidays in a hushed haze, then squeaked past New Year's by the skin of our teeth. Here's what happened.

A few weeks before the holidays, we go out to dinner with our core group of friends — five couples who spend every New Year's Eve together. The discussion quickly turns to what we are going to do for the big night. My husband and I have already decided we are going to sit this one out. There is no way I can pretend to be happy, in front of friends, about a new year that is ushering in a dirty little secret — we hadn't let the cancer cat out of the bag yet. 

Our friends don't understand our sudden desire to spend New Year's alone. My husband takes the curmudgeon hit, saying he can't bear to sit in a noisy, over-crowded restaurant for hours on end and would rather just stay home. They think he is getting old and crotchety (who isn't?). And of course they try to convince us (as all good friends will) to come along, or do something other than dinner. They promise we'll have a blast and say we're silly for sitting at home when we can do that any night of the week. After all, man, it's a new year!

Exactly.

The pressure is daunting. Everyone wants us to hang out with them but I feel like I'm drowning. (Can I get a life jacket over here? Please?) But we stick to our guns, and though our friends think we've gone a little bonkers, they ultimately respect our desire for a "romantic evening" alone. (Ha.)

New Year's Eve goes out the way it came in — quietly. We watch the ball drop, try not to think about the ball of anxiety that's been dropped in our laps, and go to bed.

Our friends post pictures on Facebook of what looks like a fab New Year's Eve, with dancing and drinking and goofy noisemakers. It really does look like fun. (And it really doesn't look like they miss us.) 

In hindsight, our little white lie has left a pretty bad taste in my mouth. If I had it to do it over again, I would:

1) Tell my friends and family sooner rather than later. 

2) Gladly put my poker face on

3) Toss back a flight of champagne 

4) Toast to a Healthy New Year

5) Be happy I am able to do any and all of the above.

... because soon enough, I'll have more days and nights sitting at home than I care to count.

(For more, see Finding Support.)

HIKE THERAPY

After I hear the "C" word from Dr. S., there are two friends that I need to tell — the only two people besides my husband who are even aware I have had a biopsy. I reach both of their voice mails. Hmmm. I know P.  will call me back when she sees I didn't leave a message — she knows I'm on pins and needles waiting for "the news." But my gut tells me to leave K. a message, a light-hearted one. So I do. Then I sit down on the couch in the living room and wait. (I guess I don't want to get too comfortable by sitting in the den; after all, cancer is a very uncomfortable topic.)

I can't cry, though I try; I'm too terror-stricken. I just sit there, completely dazed and confused, and wait for the phone to ring. The hours tick by: first One. Then Two. Then Two-and-a-Half. For 2 1/2 hours I sit on the couch, waiting, as though by freezing myself I can alter the course my life is about to take.

The phone rings — once. It's my husband, not P or K. We talk about dinner and I hang up fast.

Then I call P. again. Still no answer. Why aren't they calling me back? Are they afraid to talk to me? Do they not know what to say? They couldn't have forgotten I had a biopsy, could they have? 

My mind is conjuring up all kinds of crazy scenarios. But I'll explode if I keep this news to myself much longer. So I lace up my sneakers, throw on a sweatshirt and do the only thing I know will clear my head: I take a hike. And I can't believe I have cancer.

I know I'll run into other hikers soon on this popular trail, but for now I am grateful to be alone. I walk up a series of steep inclines that take me to the top of a magnificent hill. The view is amazing... mountains and mountains for miles and miles. The warm breeze and late-afternoon sun feels so good against my skin. I stop and gaze into the distance, trying to etch the visual image into my brain. I can't believe I have cancer. 

Then I hear voices. Really. Loud ones. I turn to see three women yakkity-yakking as they climb the hill behind me. They are with a black and white dog. They say hiello, then continue down a trail I've never taken before. Oh, what the hell, I might as well see where they're headed. I'm in a risk-taking mood. After all, I have cancer. 

These are the actual hikers, on the actual day, that I actually learn I have cancer.

They're walking much faster than me, so I really have to pick up the pace, which breaks my concentration. This is good. I decide that if I catch up to them, I'll tell these three strangers my news: It's been three hours since I found out I have breast cancer, and guess what? You three are the first to know. 

I'm deep in this thought when I hear someone call out, "On your left!" Just a guy on a mountain bike. I let him pass me, and watch as he speeds down the long, narrow trail behind the women and the dog. They can't hear him coming because they are still yakkity-yakking, but thankfully he notices this. He makes a wide turn and passes on their left so he won't startle them or their dog. But something goes awry. Suddenly I see his bike fly up in the air; there's commotion, displaced dirt and plumes of dust. The women quickly form a huddle around him. Though I can't see much from this distance, I can tell he is bleeding.

I jog toward them and as I approach, I see the gash in his forehead. He keeps saying he is OK, although when he tries to stand up he's too dizzy to do so. One of the women gives him her water bottle. I hand him the wad of Kleenex I had stuffed in my pocket when I left the house, in case I started crying. (Who knew someone would need it before I did?)

Then we, the three ladies and I, decide we will walk this man back down the mountain. All hands are on deck: One gal walks the dog. One gal walks the bike. One gal calls 911 so an ambulance can meet us at the trailhead. (She then calls the man's wife so she can do the same.) I carry his backpack, which must be stuffed with bricks because it is so dang heavy. Our little caravan slowly makes its way down the trail. 

We walk, he talks. He tells us he bikes these trails regularly, several times a week in fact, but has never crashed before. (Well, except for that one time when he busted up his knee.) As we reach the bottom of the hill, we tell him it's not such a good idea to go biking alone, 'cause what if he wiped out and we hadn't been there? Blood and coyotes and rattlesnakes do not a happy hiker (or biker) make.

We round the final bend to find his wife and daughter rushing towards us. We also see an EMT truck waiting in the parking lot. We hand off his accoutrements to his anxious family and say goodbye. He thanks us profusely. The ladies and their dog turn around and head back up into the hills to finish their hike. I contemplate following them as I watch them disappear on the trail, but decide maybe it's best not to hike alone twice in one day. 

Then I realize I never did tell them my news. Hiking is strange that way. I have cancer and have already forgotten that I do. This is good.

(See Telling Hubby to continue with my story.)

DITCHING CONTROL

Handling any major life event requires some degree of compartmentalization. (Otherwise, how would we get anything else done?) Dealing with cancer is no different. 

I am by nature a "big picture" thinker. I tend to look not only at the details that comprise my life, but how the sum of those details become my world. And before BC, I would have bet money that this mode of thinking would have been my greatest asset in dealing with this illness. But post BC, I find the opposite to be true. 

If I spend too much time looking at the big picture these days, it creates way too much anxiety. I get all hyped up and worried and filled with fear, and my ability to think rationally marches right out the front door. It's better for me to stay deep within the forest — not looking for the trees so much as focusing on the veins in the leaves. I call this small-picture skillset my blinder mentality. I imagine myself as a race horse, saddled and ready to run, but with special rose-colored glasses that enable me to see just the matters at hand. The stuff I can control today, in this hour, in this minute. 

Because it is all about CONTROL. If cancer teaches anything — and its lessons are unending — it is the new truth that you are most certainly not in control. Here's how the phenomenon presents itself.

You are riding along on the magic carpet ride of life when suddenly the beautiful, fanciful rug that you weaved for yourself and your family, the rug you have loved dearly all your days, is pulled abruptly out from under you. You — family and all — fall quickly, and with a loud thud, to the ground. 

You help your family up first, because that is what you do. Then you figure out how to pick yourself up. You stumble and drag your sorry ass to the nearest chair. You look around but nothing is familiar anymore. Everything has changed: different colors, different smells, different people (who are all those men in white coats?). It's a completely different land. And you never asked for any of it.

You never wanted to move to the edge of the cliff. You don't care to know the generic names of half a dozen prescription meds. You have no desire to spend your day in a waiting room (or, worse, waiting for a pathology report). You just want your old life back, dammit. You want what you had before cancer: control. 

But that is the very thing breast cancer strips away from us. And even though we know it, BC makes sure we never forget that we most definitely do not have control. Never did. Never will. Duh. 

Unfortunately there's no way back to the world we were so comfortable in before (or at least the world we thought we were comfortable in). Cancer leaves us in chaos that will drive us absolutely, positively and 100% completely mad if we focus on it. And so we don't. We can't. That's what The Blinders are for. We pull 'um out, put 'um on ... and off to the races we go.

So rather than worry how many more weeks it will be until I can get in to see the master surgeon who will ultimately remove this cancer growing inside my breast and tell me whether it has (or has not) spread beyond the milk duct in which it has likely been growing for years and refer me to a plastic surgeon who will do his very best to put Humpty Dumpty back together again before he sends me off to see the Wizard of Oncology, I WILL drink a tall, cool glass of water, eat my pesticide-free tomatoes and lay down to take a nap. 

Because these days, in my new small-picture world, that is how I roll.

(See Intuition for more of the story.)

CURTAIN OF DREAD

Oh My God, I am Going to Die. But don’t I already know this?

Knowing it and facing it: two very different beasts.

Cancer stirs up a big ol' pot of primal fear, that much we do know. And since our minds are programmed to go just a little bit crazy upon hearing the "C" word, it's off to terror town we go. Fight or flight? I’ll take flight please. Except there is nowhere to run to, nowhere to hide. My senses are all kafloozy. If I could cook up doom, it would taste like today.

The word "cancer" ushers with it a crushing curtain of dread that never retracts. Draw back the fabric an inch and you'll find plenty of screams, tears, terror, tissues, less oxygen than is necessary to breath, dizziness, darkness (lots and lots of darkness), a bottomless pit and two massive fists trying to clutch at your throat.

Oh. So this is what it feels like to lose your mind.

For me, it happened immediately after I hung up the phone with my primary care physician. 

I am in a cloistered place of abject terror, sitting at the kitchen table for what feels like forever (but in reality is actually only about 10 minutes). I remember putting my hand over my mouth (the way you do when you see or hear something so shocking you are unable to process it) and feeling dizzy. the instant I heard Dr. S. utter the word "cancer."

My body had turned into a knife: Every thought and feeling I had, every breath I took, hurt like I imagine a stab wound would. 

But something primal deep inside draws me back to the moment. I somehow gather my wits right there in the kitchen chair and suddenly sift through a mental list of people I should call to tell them I have The Big C. Obviously my husband tops the charts — but that must wait until tonight, as I can't bear to give him this news over the phone while he's at work. 

I set that desire aside.

Next up: My two closest friends, P. and K (the one on the west coast and the one on the east). We three met 30 years ago at a fraternity house party and immediately clicked. We've been through every life event imaginable together. Last week I told them that "No news is good news." I told them I would only call if the news was bad. They assured me all would be well. But this is news. Definitely news. Definitely bad news. 

I call P. at work but she doesn’t answer her cell. I don't leave a message, knowing she'll see that I called and buzz me back (remembering my "I'll only call if the news is bad" pact).

I move on to K. She is also at work, and doesn’t answer her cell either. ERGH! Didn't anticipate this. Can't just hang up though. I think for a second, then put a smile on my face (because I know this will positively affect the tone of my voice) and I leave K a lighthearted message: “Hey! Just calling to check in. Give me a buzz!” I didn't feel it was right to lay out the actual news in a voicemail. I couldn't do that. Call me crazy.

Then I curl up on the couch and wait. And wait. I feel like buckshot in a rifle on the first day of hunting season, waiting for a trigger finger so I can release this fragmented feeling of death.

An hour goes by and I am still laying on the couch, in a sub-catatonic state, when the phone finally rings. Whew! But it's neither P. nor K.; it’s my husband. Crap. Why did I answer the phone? I don’t want to lie if he asks me if I’ve heard from the doctor. Thankfully, he doesn't ask. That may sound weird, but he doesn't want to know the answer any more than I want to give it. So I don’t tell him the news that will soon spoil our dinner. Instead, we talk about what's for dinner.
 
Then I sit back down on the couch and wait for K. or P. to call. (To continue my story, see Hike Therapy.)

RELATED POSTS:

• Cancer Club (Part II)
• Cancer Club (Part I)
• Isle of Denial
• Intuition 

FINDING SUPPORT

On December 20th, 2010, I sit down at the computer and begin my real journey: The one where I take off my goggles, put on my glasses and start Googling. (This is otherwise known as the "information-hunting-and-gathering" phase of life after a breast cancer diagnosis.)

The process of medical fact finding forever alters — in fact, downright bursts — the protective bubble we build around ourselves upon initially hearing the C word in the same sentence as our own name. But let me warn you: You better be ready. Because once you open the door to that world of info, the winds of change WILL come rushing in. And after that happens, the hands of time can never be turned back.

My fact-finding mission on this day shortly before the Christmas holidays uncovers a support group that I never knew existed. A community comprised of women of all ages and stages that congregates online to share their battles with breast cancer. It's a safe haven of sorts, a place where we can dump the most gruesome details of our cancer battle and find not only relief, but others who have been there, done that. It's a 24/7 sanctuary free from judgement, full of support and rampant with humor. Mothers representing daughters fighting the disease can be found here, as can daughters gathering strength for their moms. Even husbands have been known to join forces on behalf of their wives. Everyone is welcomed; you just need an introduction to The Big C.

There is safety in numbers, and that certainly is the case with the women fighting alongside me — they number in the tens of thousands on this group alone. We stand together, tall in our struggles, our hopes, our fears. We are united in our desire for a long life, a cancer-free future, and unlimited fun time with family and friends.

And I don't know how I could have gotten through it all without them. (See Ditching Control  and Curtain of Dead for more of my story.)

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

CANCER CLUB (Part I)

I am an official, card-carrying member of the Cancer Club. I unwittingly applied for membership on October 1, 2010 and was formally accepted on December 8, 2010. Here is how my story begins.

During my annual mammography exam in October 2010, the techs (one experienced, one trainee) tell me they need extra views of my right breast. This is generally not a good sign, but I don't ask questions; I have dense breasts and I know this makes it hard to get a clear reading. Or perhaps this is simply an exercise for the trainee; maybe she didn't get a good image the first go-round. I submit to the extra views. I get dressed, go home and get on with my life. 

One week later,  I receive a letter from the imaging center with good news: My test results are normal! Wow. Really? Whew!

Fast-forward a few weeks to early November 2010. A second letter arrives in the mail. Upon further review, the letter states, a "subtle architectural distortion" is noticed between my 2009 and 2010 mammograms and "given family history" (my sister had breast cancer ), an ultrasound is recommended. 

Hmmm. So if I didn't have family history, would this "subtle architectural distortion" simply be overlooked? (This is a scary thought — since more than 75 percent of breast cancers are found in women with no family history.) In fact, I come to learn that a woman's risk of breast cancer approximately doubles if she has a first-degree relative (a mother, sister or daughter) who has been diagnosed with breast cancer. Yikes.

I set up the ultrasound appointment immediately. Then I do a self-exam to see what they are talking about. BINGO! I feel a quarter-sized lump in my left breast. I recall the extra views they took during my October mammogram — this must be why. Still, for whatever reason, I am not worried. In fact, I don't even mention it to my husband. I just go in for the ultrasound.

While I'm laying on the table waiting for the procedure to begin, I tell the tech about the lump in my left breast. She says the ultrasound is for my right breast. Huh? But what about this lump here? I ask. She rolls the ultrasound wand over my left lump and assures me it is a simple cyst. She then turns her attention to imaging my right breast. 

As I wait at the edge of the chair in my little blue gown, the tech goes out to find the radiologist. The room is cold, and dimly lit. I wait a very, very, very long time. While I wait, another woman enters the room, hands me a heavy packet stuffed with pamphlets about breast cancer and says in a sheepishly cheerful tone, "There's really a lot of good information in here!" Of course I find this extremely odd; no one has mentioned anything to me other than the fact that I have dense breasts. So I listen to the voice of reason inside my head that tells me everyone is likely receiving this literature because October is Breast Cancer Awareness month. (Even though I know it is now November.)

After about 40 minutes of waiting, I poke my head outside the room and ask a passing nurse if they have forgotten about me. The tech comes in to say they are still waiting for the radiologist. I am obviously in denial because I don’t ask any further questions. 

Finally, the tech returns. She tells me that I need to have a biopsy of the area in question. It’s a simple procedure, she explains, and my breast will be numb so I won’t feel any pain. She then very casually mentions that I can return in two days to have my biopsy done. Two days? Two DAYS? Why do I need to come back in TWO DAYS? I don't actually say this, but she can see the terror in my eyes. No one has mentioned the words cancer or malignancy. 

Deep inside I realize something is up but my denial is stronger.

"Oh, you can wait until Monday if that's more convenient for you." Why yes, waiting is definitely more convenient for me. So I make an appointment for a week from today — Monday. I’m certain this will give me enough time to wrap my head around this biopsy business. And so I go home. And I do not tell my husband. (To find out what happens next, see Cancer Club Part II.)


RELATED POSTS:

• Cancer Club Part II

• Curtain of Dread

• Isle of Denial