GIVING UP THE GHOST

The last I wrote of my journey with reconstruction (see Delayed Healing), I was trying in vain to save my right tissue expander. Allow me to catch y'all up on my physical progress since then. I'm including photos to help anyone out there who may be struggling with delayed healing issues. First, let's backtrack to a year ago.

July 6, 2011

July 2011 My original right incision never healed closed after my mastectomy on February 3, 2011. After repeated surgical interventions to debride and re-suture and heal it, a pinhole developed through which fluid seeped at a consistent pace. The pinhole grew from a tiny dot to the size of a large pinhead (see photo). Because it is an actual hole and not just yellow/green tissue (see Delayed Healing for pictures of that), my plastic surgeon, Dr. C., and I decide it is time for the right tissue expander to finally come out. I make peace with this decision.

July 6, 2011 In the hospital under anesthesia, Dr. C. cuts into the healed portion of my old mastectomy scar, excises the expander and scrapes away the scar tissue that has built up over the past five months. This tissue will be sent to the lab to make sure I don't have an undetected infection as well as to check for cancer cells. 

This is my fourth surgery on this side (not counting in-office stitching). The fourth time I undergo general anesthesia in as many months. The fourth time I try in vain to heal this wound. (But who's counting. Oh right. Me.)

I wake up and don't feel nauseous (always a sign of operational success!) and am sent home a few hours later. With another damn drain in a different place (which means another awful scar). I'm wrapped tight as a mummy in an Ace bandage and not allowed to shower. Which is alright by me, because I'm dreading having to look at my mutilated self.

July 10, 2011

Despite the internal and external trauma of delayed healing and the subsequent removal of my tissue expander and scar tissue, the AlloDerm that Dr. C. placed in righty during my mastectomy is holding up just fine. That's the good news. But I'm now left with a crescent-shaped mound resting above my inframammary fold line, and a sagging, scarred pile of skin above it. Just call me Uneven Annie.

Time passes. My incision heals. For. The. First. Time. EVER. (I guess my body really didn't like that right expander.) My biggest challenge now? Disguising the fact that I'm now a one-boobed wonder when I leave the house.

The easiest way around this is to wear a structured bra that clasps in front. (This workout bra is by Danskin; I bought it at Walmart.) I don't fill out the cups, but that doesn't matter; when I wear this baby, I look "normal" in clothes. Only when hugging me would you notice a dent. (So I don't hug too many people.) The plunge design of this bra allows me to finally wear regular tops. (I've been living for months in surgical vests 24/7... they provide compression for the fluid build-up and a way for my bandages to stay put. I will not miss them.) What a relief to leave button-down shirts on the hanger.

November 30, 2011

I also begin physical therapy twice a week to regain the range of motion on my very weak right side. And I'm beyond relieved to hear neither infection nor cancer is found in my scar tissue.

December 1, 2011 One week before my one-year cancerversary (see that post here), I have my fifth surgery. Dr. C. inserts a new right tissue expander and fills it to 200 ccs (rather than the original 350 ccs like my other side). For the first 25 days, all goes swimmingly. My incision looks to be healing. I'm back in my surgical vest and recovering while also preparing for Christmas. But I overdo it, eagerly handing out gifts from beneath the tree I also helped decorate. What was I thinking? I notice a tiny spot of yellow on my bandage that night.

January 5, 2012

December 28, 2011 I notice a larger yellow spot on my gauze pad this morning. Here's the weird thing: The spot isn't on my fresh incision line. It's along my OLD incision line — an area that wasn't even cut during my last surgery! Truly, this is my Achilles heel. I feel like I just found out someone or something died: My hope.

Despite all this, and for reasons unknown, the tiny area does not develop into an actual hole like it has so many times in the past. It simply weeps. Kind of the way I do when I stop to think about how long I've been struggling. I use less antibiotic ointment this time around because I read somewhere that too much can inhibit healing. Dr. C. doesn't think this has anything to do with it, but I'm willing to try. Maybe this is why it's not getting bigger?

February 29, 2012

February 2012 Sometimes I have seepage after I shower, so I cover my incision with a big, waterproof bandage. Afterwards, I have to press down on the area above my expander to force out the accumulated serum that continues to build up inside and around my expander. Still, the area continues to improve. (Fat fingers crossed.) A yellow scab forms. I am cautiously optimistic. 

But the feeling is fleeting.

March 5, 2012

March 1, 2012 I shower with my waterproof bandage, and afterwards dab alcohol gingerly around the tiny scab. Lo and behold, the tiny scab comes off. Yippee! This means I'm healed! I quickly grab my magnifying mirror — and to my horror I see there is a tiny black hole instead of fresh tissue. Healed skin never resided behind that scab; it was all just an illusion. 

I almost drop the mirror. Instead, I start to cry. I can't take this anymore. I have been tolerant. I have been compliant. But it's been 13 bloody (in the British sense) months and I'm SO over this physical and metaphorical black hole. Part of me wants to keep denying that I've got a medical problem with no solution. Another part of me is pissed off and ready to take on someone, anyone, by the horns. The rest of me is just tired. Luckily I have an appointment in a few days with Dr. C. He will know what to do!

March 6, 2012 I'm feeling frustrated, confused, impatient — dare I say it: I'm in a mood. My pinhole continues to ooze. I explain the whole thing to Dr. C. He listens. He empathizes. He looks. He presses. He squeezes. Then he shakes his head. I have never seen him this perplexed or down. Then he drops the bombshell: He is not sure what to do with me.

What do you mean, you don't know what to do with me? You're a doctor! I'm doing everything right and this is all very wrong. I say nothing about getting a second opinion, but I'm absolutely thinking it — and he must be a mind-reader because he suggests I get one. (How many doctors do you know who are willing to tell you that? It takes a lot to admit defeat. Or at least profound frustration.) I'm also wondering why he hasn't shared my case with other surgeons and collectively figured this out. Again, he reads my mind: He tells me he has a colleague at UCLA that he wants to discuss my case with. 

I would like both of those things: A second opinion, and you discussing my case with your colleague. There. I said it. And man, it feels good.

Newly energized by anger, I go home and contact a friend who had reconstruction (see my Get This Party Started! post). She gives me the name of her doctor. As I'm about to dial his number, my gut interrupts: Don't call this guy. Why? Because I suspect he's the same surgeon that Dr. C. is going to confer with. I don't make the call. I listen to my gut.

I turn my attention to a woman I know online who is an expert on tissue expanders. In addition to her vast technical knowledge, she keeps a database on leading surgeons (as well as clunkers who should never work on a woman again) in dozens of cities across the U.S. She tirelessly volunteers her time helping breast cancer patients navigate the tricky, murky waters of TE Land. I lay out my tale of woe and ask for a referral or two in my area.

She emails back the same day, but I am unprepared for her reply: "I think you need to give up the ghost on implant-based reconstruction only. There is some reason your body is reacting in this manner and I do not think that current methods of trying to resolve the problem are working now or will work in the future."

   

March 13, 2012

And, just like that, my merry-go-round comes to a screeching halt.

I'm in a funk for three days. Pissed that someone could thwart my hopes to heal with one blunt email. The truth is, I'm unwilling to undergo more drastic surgical measures to "fix" my problem (i.e., a skin graft from my back, or taking fat from my belly to make a boob). I'm stubborn. I've been suffering through this for far too long to just "give up the ghost." But maybe that's exactly what I should do. Give up the ghost of what I want for what I can realistically have. (Like getting cancer wasn't enough of a kick in the mouth! This whole recon thing ain't for the faint of heart.)

March 14, 2012

March 14, 2012 Something amazing and unthinkable has happened overnight. My pinhole is no longer a pinhole. My incision is closed. CLOSED I tell you! I can't believe it. I was religious about taking photos of myself throughout this process; see it for yourself.

Miraculous, right? Guess I had to get good and mad in order for my body to release its need to seep. I was living in limbo land for so long that when I finally stopped crying and feeling sorry for myself, so did my body. And in that moment I took back my control. I was able to let go emotionally. And I began to heal.

March 27, 2012

March 27, 2012 I see Dr. C. again. He is visibly concerned about my plight. (He doesn't yet know that my pinhole has healed. I don't tell him; I want to hear what his colleague had to say first.) I'm sitting in my unopened, button-down shirt. Before he begins, I ask what the other surgeon's name is. (HA! I was right. It is the same surgeon who operated on my friend. The gut never lies!) Dr. C. says both he and the other Dr. C. think I need a Latissimus Dorsi Flap due to my compromised healing. And that's when I open my shirt. I flash him my healed incision and stop him cold in his tracks. (How often do you get to flash an unsuspecting man?) His mouth literally drops open. He is shocked speechless. He knocks on the wall for luck. "This is completely unexpected," are about all the words he can muster.

I no longer want a second opinion. (Kinda already got one.) The seeping and weeping has ended. I am healing. It will take a few more months. I can do this.

July 15, 2012

July 10, 2012 I see Dr. C and it's official: I am completely healed! Here the hitch: During normal reconstruction, saline is injected into tissue expanders over a period of time to stretch the skin and help prepare it for final implant surgery. I have 350 ccs on my left side from my first surgery, and 200 ccs on my right side from my TE reinsertion surgery. This is not ideal because A) they are not very big and B) they are uneven in size. I won't be as big as I was before, but Dr. C. is confident he can make me match (using implants only) on the surgery table, and with a good result. I do not need a skin graft. If I didn't trust this process completely before today, I do now.

Dr. C. does not want to compromise my skin integrity by stretching me further, so I will not be getting fills every couple of weeks like we originally planned. He has, however, decided I can have one fill (more for the experience, I think, than anything else.) Though he's never allowed a patient to do so before, he lets me push the saline through the syringe, giving myself the long-awaited 50 cc fill on each side. (It's only been 17 months. What's my hurry?)

(Illustration courtesy of Breastcancer.org; all reconstruction photos © 2012 The Big C and Me)

On that note, my friends, this blog is officially up-to-date with my real life. It is tracking true to life events. (That's something I've been trying to do since I started writing back in April of 2011.)

When I finally have my exchange-to-implant surgery (didnt I tell you? It's scheduled for September 5, 2012!), my posts will be in real time. 

Woot woot!

EDITED TO ADD: To read what happens after my exchange surgery, click here.

ORANGE YOU GLAD

Day 12 of the WEGO Health Activist Writer's Month Challenge — stream of consciousness day. I have been directed to "just write, don't stop, don't edit." Here goes.

I'm not sure I understand people's reactions when they find out you have a life-threatening illness. Why does this news cause so many people to retreat like turtles?

Sticking your head in the sand is a handy trick, I have mastered it (and it has served me) well, but don't I get a free pass to stick my head in the sand? After all, I'm the one left dealing with this whole mess.

The folks surrounding me, resting on branches far and near, can slip back into their "before" lives while I — I must live in my "after" life.

Maybe this is just how it goes. We all, at some time or another, must deal with issues that threaten our lives and our way of life. Maybe I'm just like them. Maybe I'm no different. Maybe they are the normal ones. Maybe their behavior is appropriate. Maybe I expect too much. Maybe none of it matters at all. Maybe I over think it. Maybe, maybe, maybe.

(Copyright TheBigCandMe 2012)

Cancer is a shakedown. If you grab hold of an orange tree and shake real hard, you're gonna loose a lot of fruit. I feel like an orange rolling around in the dusty grass, lodged up against a tree trunk. (Between a rock and a hard place, so to speak.) Some days I feel like the orange in the back, left to rot. Other days I'm the bright and shiny fruit shouting "pick me, pick me!" 

I'm not still on the tree. But I like to imagine what it would be like to be back on the tree: To be plump and perfect, juicy and sweet, unblemished, waiting in anticipation for what lies ahead. I used to be that fruit. Used to feel bright, shiny and new. This cancer sh*t, it's bad for the tree and its bad for me. Like real harsh weather, brutal heat or too much rain — cancer literally beats the life out of you.

But blogging... somehow, blogging makes it all better. (Maybe not all, but some; I'll take some better. I'll take mo' better.) Gotta give the orange a voice. It has plenty to say, even when it's rolling around beneath the tree. Pick it up, wash it off — voila, like new! (Who knew?)

It's not so bad. Smells good.

Orange you glad?

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?

GET THIS PARTY STARTED!

One morning, just days before my surgery, I am sitting in my BFF’s kitchen. But this is no ordinary catch-up, chill-out visit. It’s much more personal, educational, important — dare I even say enlightening.

BFF has invited her friend "E." to join us for coffee. E. is a breast cancer survivor. She had a bilateral mastectomy and reconstruction — the same surgeries I am about to have. The entire process, from soup-to-nuts, start-to-finish, took her nearly two years.

That is a very long time.

I’ve known E. for awhile; we see each other at holiday and birthday parties (she and BFF have kids close in age). But I have never had a conversation with E. about breast cancer. Not that I didn’t have an opportunity; I saw her several times while she was undergoing reconstruction, and although I always made a point of asking how she was doing, she always made a point of saying she was fine. I never got the vibe that she wanted to talk about “it” — particularly at a party. And since E. makes a sinfully delicious dirty martini (complete with huge, juicy olives stuffed with bleu cheese), she would always then say, “Want a drink?”

It was soon after my diagnosis (in the same phone call, if I recall) that BFF suggested I call E. But I never felt comfortable picking up the phone; not exactly sure why. Maybe it was because E. never seemed open to discussing BC. Maybe it was because I didn’t know her very well. Or maybe it was because I was the one uncomfortable about opening up. (When my plastic surgeon’s office gave me the cellphone numbers of two women who recently completed their reconstruction with him, did I call them? Nope.) I guess I was afraid to hear all the details — the good, the bad, and the very, very ugly.

But as my surgery date creeps closer, I begin to crave face time with someone who has walked this path ahead of me. I want to benefit from their hindsight. Thankfully, during one of my repeated rants in the midst of all this cancer crap, my BFF had heard me loud and clear and took action, just in the nick of time.

So here we sit, we three women, and now I can’t stop talking to E. about breast cancer! I ask her everything I can possibly think of regarding pre- and post-mastectomy surgery and recovery. My notebook is crammed with questions, from the most mundane (if I can’t bear any weight on my arms, how am I supposed to drag myself out of bed in the middle of the night to use the bathroom?) to the more technical (what size were your tissue expanders? Did your surgeon use a biologic?), to the absolutely, utterly personal (are those [surgeon-created] fipples? Wow!). 

E. answers every one of my probing queries. And slowly but surely, my pre-surgery jitters begin their final fadeout.

The highlight of my meet-and-greet that will forever be seared into my brain is the fact that E. shows me her boobs. Yup, she shows me the money, honey. And they look freakin’ fantastic!  Here's the thing: When a woman is about to undergo the removal of two of her most cherished (and visible) body parts, finding another woman who looks just like she hopes to one day is nothing short of inspiring. Seeing how splendidly medical science can piece us back together (after using their many weapons of mass destruction in the OR to tear us apart) is not just reassuring, it’s downright life affirming. It makes me realize I will get through this. I will look whole again. If E. can do it, so can I.

So after explaining her entire reconstruction to me in great detail (including her complications, which I obviously have blocked out because I can’t for the life of me recall what they are), she casually reveals her "booby" prizes: two symmetrical, incredibly natural-looking, 36DD “foobs.” And they are amazing.

I have been so focused on the deconstruction part of my journey that I haven’t really thought all that much about my reconstruction, even though it is occurring at the same time, on the same table. Today, in the safety of BFF's kitchen, I allow myself to go there. Not only does the experience with E. help soften the mental blow of my mastectomies, but it forces me to truly face what I am about to go through. 

(Copyright ©2011 Rennasus)

These two hours, spent over a cup of hot joe with a woman I hardly know while she shares her most intimate details with me, are not just a bonding moment or a necessary evil or even a way for me to face my internal music; it's all of those things. But more importantly, these two hours are about the sheer force and monumental power of sharing a life-altering experience with another human being who knows exactly what I am feeling, fearing and denying.

And it is this moment that makes me finally ready to climb aboard that hospital gurney and get this party started. Surgery, here I come!

INTUITION

A question that comes up often when people first hear about my diagnosis is, "Did you know?" What they really mean is, did my gut tell me? Yes and no. My gut knew; it was my head that didn't. To wit:

1. When I'm called in for a second mammogram to get more compression views, I think nothing of it. Yet, subconsciously, I know there is more going on than just "dense tissue."
2. When the ultrasound technician tells me I need a biopsy, I don't ask her any questions, though she gives me plenty of opportunity to do so. I make the appointment but don't tell my husband.
3. When I have a core needle biopsy, I tell myself the procedure will simply show what benign breast tissue really looks like.

The evidence is adding up — yet I don't do the math.

Then one night I have a dream. In it, I'm telling both my parents that I have breast cancer. And I'm very sad because I realize that my father — who passed away three years ago — will never know that I have it. 

I awaken with a haunting feeling.

It was only after my diagnosis that I recall my dream and acknowledge how wise the subconscious mind is. It always knows.

Next up: Dr. A and Dr. J.

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.)

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 

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