SISTERLY SUPPORT

What do you do when you're knee deep in do-do and about to go through something as awful and terrifying as surgery? You Google It, natch. And after you've researched said awful, terrifying something, if you are like me, you then go about finding others who are going through the very same do-do as you. (Because sharing do-do is much better than dealing with do-do alone.)

That's how I stumble upon a vast network of women who are going through breast cancer just like me. Tens of thousands of women. And I find them just 12 days after I am diagnosed. How lucky am I? This online community of sistahs keeps me laughing, sane, supported and in check. They are my lifeline on an otherwise do-do filled journey.

One of the things I love most are the insightful moments that come out of our online discussion threads. Everyone has their own unique perspective as they wade through the all-too-familiar mire known as cancer. Sometimes people's perspectives match mine dead-on (pun intended); other times we differ dramatically. One day during a rather frank discussion about death and dying, a woman shared something quite profound. A close friend of hers had recently passed away (and not from cancer, BTW). The deceased friend came to this woman in a dream and said, "Just because you have cancer doesn't mean you are going to die — just like not having cancer means you are going to live."

Whew. That statement, spoken to a woman in a dream by a woman who is dead, makes the hair on the back of my neck stand up.

Here I am fretting (albeit understandably, gotta cut myself some slack here) about the possibility of dying. But what's changed? I'm the same person I was 6 months ago. (My breast cancer was in me then too; my surgeon says it's probably been growing for 10 years). Yet now the word "cancer" and my name are forever tethered together.

I think cancer brings me closer to death. Or does it? Aren't we all just a hop, skip and a jump away from biting the big one? Some of us are fortunate (and I use the term most loosely) to get a glimpse of our potentially shortened lives. It's one of the many, ahem, "opportunities" that cancer conjures up. (Cancer provides plenty of other "opportunities" too, but I haven't the time to delve into that do-do right now.)

But this I know is true: We all die. And we all spend our lives trying not to think about it.

Your not having cancer doesn't mean you are going to live any more than my having cancer means I am going to die.

Think about it.

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.)

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 

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