SOLO SOJOURN

Each time I am about to have surgery, I make a solo sojourn into the mountains. I take no prisoners, no compadres. I have to do this alone. (Just like surgery.)

It's my attempt to quiet my chattering mind, but it also gives me a calming memory from which to draw upon during the various periods of anxious waiting, waiting, waiting that I experience on surgery day.

First, there's the waiting for water I cannot swallow because it's after midnight. Or the cup of joe I smell in the morning as my husband sips it while reading the paper before we leave. I am too nervous to focus on words.

Then there's the waiting in the passenger seat of our car as we drive to the hospital in the inky pre-dawn light...

MANAGING CHAOS, ONE YEAR LATER

(© 2012 The Big C and Me)

I was scrolling through some of my old blog posts and found one that was written exactly one year ago today. In it, I talk about how to manage the post-diagnosis but pre-surgery chaos that every patient has to deal with. 

"I took cancer from an angry rolling boil down to a simmer by determining the who, what, when, where,why and how of my diagnosis. This not only gave me a path and a direction, but a sorely needed compass. Once you figure it out, managing your cancer chaos gets much easier." 

Read the rest of the post here. I hope it helps any newbies out there.

CAPTIVATING CANCER'S CAPTIVATING CANCER

I skipped Day 20 yesterday of the WEGO Health Activist Writer's Month Challenge (I'm allowed two "get out of writing" passes). But today's exercise (Day #21) is wild and wacky and I couldn't wait to try it! (It's one of my favorites of the writing challenge thus far.) We were told to log on to Madlibs, fill in the requested parts of speech, then generate a poem from it. It's trippy! Mine came out in the rhythm of Sylvia Plath. Check it out!
 
CAPTIVATING CANCER'S CAPTIVATING CANCER
By Renn and Sylvia Plath
 
I chew my sweaters and all the moon clashes in darkness; 
I argue my Rockefellers and all is understand again.
(I gnaw and separate you up inside my hammer.)

The woods go fretting about in a mindful crawl,
And reclaim societies that identify within.
I justify my violet and all the companion trains each afternoon.

A liar improves from the ledge, but the screenplay's mountain justifies,
And dominates gold and silver's river:
I justify my violet and all the companion trains each afternoon.

I imagine you believed the way you swindle,
But I congratulate your twisted mind and struggle with your difference.
(I gnaw and separate you up inside my hammer.)

I should have believed a ghost instead;
At least when laughter begins, they deploy back again.
I justify my violet and all the companion trains each afternoon.
(I gnaw and separate you up inside my hammer.) 

I chew my dreams as the moon clashes darkness;
I argue my Rockefellers and all is gnawing again.
(I understand I believe you up inside my society.)

The woods go fretting about in mindful alarm,
And reclaim relief identifying within:
I justify my violet and all the companion trains each afternoon.

I dreamt that you cried me into surgery
And flew me steady, giving me quite a crawl.
(I understand I believe you up inside my society.)

The screenplay improves from the ledge, and the liar's mountain justifies:
dominating gold and silver rivers:
I justify my violet and all the companion trains each afternoon.

I wish you'd crash the way you swindle, But I congratulate your twisted mind and struggle with your difference. (I understand I believe you up inside my society.)

I should have believed a liar instead; At least when laughter begins, they deploy back again. I justify my violet and all the companion trains each afternoon.
(I understand I believe you up inside my society.)

PATH TO THE REPORT

Let's talk food and conversation post-surgery — specifically, food delivery by friends and family while a patient (that would be me) is recovering. 

The people, they come with the meals. As in, they bring over the food, they sit down and they eat it with us. 

Perhaps this is peculiar to my circle of loved ones; my family lives thousands of miles away, and two out of my three siblings (plus my sister-in-law) have traveled to see me post-surgery. My husband has taken off work to take care of me, so I don't really need (or want) anyone staying at my house. Lucky for me, they all stay with my Mom.

But let's get back to mealtime...

DOUBLE DIPPING

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

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

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

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

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

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

(Copyright ©2011 Rennasus)

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

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

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

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

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

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

HEADING HOME

BREAST CANCER LESSON NO. 213: Don’t let your husband go home the first night you’re in the hospital.

Such is how my evening begins.

After enjoying the requisite post-surgical strawberry jello and juice, my husband heads home to feed the dogs and get some rest. It’s 8:00 PM when he kisses me goodbye, saying only that he’ll see me early the next morning. (We neglect to clarify what “early” means.)

My chest is bound up like a Geisha’s feet, and I have four plastic tubes the thickness of straws sticking out of me — two on either side. The tubes are a foot in length; at the end of each tube is a plastic bulb about 4 inches long x 2 inches wide into which fluid drains from my incisions. A nurse comes in periodically to empty them; they fill up fast the first day. It’s gross and smelly.

I also have a pain pack that automatically releases medication through two very thin tubes under my chest. So I have four tubes, four bulbs and one tennis ball-sized pain pouch hanging off of me. (Anyone wanna dance?)

As a fresh-from-surgery patient, I must rely on the nursing staff to help me do everything. (Thank goodness I have a catheter.) What makes this more difficult is that a nurse, in her infinite wisdom and attempt at kindness, has closed my door so I can get some sleep. There is a visitor’s lounge a few doors down from my room, and in the middle of the night, it turns into Comedy Central. Every graveyard-shift employee is stopping by — laughing, eating, chatting on cell phones… a real hootinanny. (At least  that's what my codeine-fueled brain is imagining, anyway.)

My closed door also means I am now isolated. I can’t catch anyone’s attention as they walk by. So my night goes something like this: pain, nurse button, pain meds, BP, drains drained, nap, noise, awaken, lights, thirsty, can’t reach, pillows slip, can’t correct, itchy, can’t scratch, too hot, blanket off, too cold, blanket still off; nurse button, wait, wait, wait. Repeat.

The night nurse's aide — definitely not in the running for Miss Congeniality — is very busy and not very worried about me. I must look like I'm doing well. Her English is also not great. She doesn’t understand what I mean when I say I need her to scooch me back up in the bed. (I can’t use my arms, so it is impossible to move myself; and I’ve slid so far down the bed that my feet are starting to dangle off the bottom.) She is in and out in a flurry. (Again, this is how my brain-on-pain-meds is perceiving it.) I fall asleep with the comforting thought that soon, my husband and sister will be here to help.

Morning comes, as does my breakfast — the first solid food I’ve had in more than 30 hours. I gobble it down. No idea what it was. But my sister should be here soon. I haven’t seen her since before surgery; my husband sent her (and my mom) home when I was having trouble coming out of anesthesia. She’s an early riser so I expect her to walk through the door any minute now.

Breakfast is over. My water and cell phone are nearby. It’s 7:30 AM — too early to call anyone. I watch some television and doze off. I wake up at 9:00 AM and call my husband. He just got up. He says he’ll be here in an hour. I'm bummed. I feel like I've been waiting for him for forever.

That’s when I notice the sign taped to my door: “No BP on left arm.” What? That’s wrong! It’s supposed to be no BP on RIGHT arm! (Because I had lymph nodes removed from my right arm, I can't have my blood pressure taken on the right side.) Oh... so that’s why I had to keep correcting the nurse last night every time she came in and went for my right arm....

These are the details I focus on to pass the time.

The clock says 10:00 AM. I call my sister. Turns out she was intentionally not coming to the hospital this morning to give me time with my husband. Huh? She says she thought my husband spent the night in the hospital with me. I never said that. I ask her to stop by after lunch because hubby will be here any minute. (BC Lesson No. 214: Always ask exactly when someone is coming back before they leave.)

Nearly 11:00 AM now and still no husband. You can guess what I do next. Yup. The tears flow like a swollen stream after the rain.

And of course that is precisely when he walks in. Oh, am I cranky. I can’t do anything for myself! The night nurse couldn’t understand English! There was a party next door! I was completely miserable and hardly slept all night! I couldn't reach anything myself. I couldn't scoot myself up! I couldn't move my pillows! Blah, blah, blah! I pepper him with complaints rather than compliments. But he fluffs my pillow and flips it over to the cool side for me anyway. He gets me my pain meds and some ice water. He fixes the lousy sign on my door. And I start to relax just a little.

My sister arrives. I take my first walk down the hall, notice the visitor’s lounge and put two-and-two together. (So it wasn't just my imagination on drugs!) . My surgeon also stops by to see how I’m faring and is happy with my progress.

That evening, after my husband and sister go home, an absolute angel of a nurse on the graveyard shift appears. She is sweet, she is kind, and she is compassionate. She makes sure I have everything I need and never makes me feel like I am asking too much. She stops by often. She is like a dream compared to the night nurse before her. I actually sleep.

Morning No. 2 dawns, and my BFF arrives at 6:30AM. YAY! I called her yesterday about the mix-up with my husband and sister; thankfully she is an early riser and offered to come visit. After breakfast, we take a stroll down the hall. I’m in a purple robe trailing my IV bag on a hook. We go real slow. I feel weak but I know I need to move. As we round the bend, I see Dr. C., my plastic surgeon, leaning against the counter at the nurse’s station. He’s dressed in street clothes. 

“That’s your plastic surgeon?” my BFF asks. I think she is surprised I haven't mentioned the cuteness factor. (She later tells me she would be happy to accompany me to my plastic surgery appointments; she's only half joking.)

Dr. C. walks us back to my room, says I'm doing great and that I can go home. HOME! Yippee! He wants to see me in his office in three days for a follow up, when he’ll remove my drains and pain pack, but for now he is pleased with my reconstruction so far and even offers to show me how I look before I leave the hospital.

Oh no. I’m not ready for that. I want to stay wrapped up in the safety of my bandages a little while longer, thank you very much. I want the “big reveal” to happen in the comfort of home.

WATERWORKS

My room is ready. (Wish it were overlooking a tranquil sea instead of in a hospital, but I'll take what I can get.) After 4 ½ hours of surgery and five hours in recovery, a room without a view sounds pretty darn good right about now. At least it's private.

A male nurse arrives to take me upstairs (what floor, I couldn’t tell you). Despite my post-surgery brain fog, I find it a little odd that he's the only one assisting in my transfer (besides my husband, that is). As I’m wheeled backwards into the elevator, I suddenly feel emotional. I close my eyes and let the tears roll silently down the sides of my cheeks.

Then BAM! The magnitude of the moment finally hits me. Just. Like. That. Up until surgery, I've been able to focus on a single thing at a time, placing one foot in front of the other. I had tunnel vision, and I liked it. But with surgery now complete, I'm left to face my new reality. And I have absolutely no idea what that looks or feels like.

We reach my room and I'm still quietly crying. Like a leaking faucet. Can't turn the waterworks off. (This time I don't even try.) The lone male nurse raises my gurney so it’s the same height as my hospital bed. Then he asks me to move myself over. Yup, you heard me right — he is not planning to slide me over using a sheet, he is asking me to move my fat fanny from the gurney onto the bed. Myself. After I just had major surgery. 

I can’t. How do I do that without using my arms or pulling on my chest? Why can’t someone else help? Where are the other nurses? Why is he asking my husband to spot him? Are they really that short-staffed?

I'm not sure how much of the above I actually verbalize (parts, but definitely not all). And there stands my fabulous husband, encouraging me to "just slide over," saying it’ll take a few seconds and then it will be done. I glare at him. Whose side is he on here? But I haven't the energy to fight. He's right. It will only take a few seconds, but why should I have to...? Before I can even finish my martyr-lovin' thought, I do a one-two-three shimmy off the gurney and onto the bed (with their help), crying the entire time. In part because I’m in pain, natch, but mostly because I’m a freakin' emotional mess. Yet this doesn't seem to faze the nurse, nor my husband. Huh?

I'm caught so off-guard by the wall of rage that is building inside me that I cannot hold it back. (Kinda like retching in the recovery room.) My feelings are overripe. Oh no. Lower your lids, this ain't gonna be pretty.

“Don’t you people understand what I’ve just been through?!” I scream the words, surprising even myself with my ferocity. (The male nurse spins the gurney out of the room so fast I think he left tread marks.) My husband looks startled. He’s never heard me lose my cool like this before. N-e-v-e-r. But the raging isn’t over. 

“I just had my breasts cut off!" I continue screaming (and don't care who hears me — so unlike me). "Don’t you get it? Do you know how hard this is?” My voice is horse. 

All the raw, suppressed emotion of the past two months shoots out of me like loose gunshot, hitting anything and everything in its angry path — in this case, my poor husband.

“You're a very strong woman,” he says calmly. “You’ve been so strong through all of this.” 

Lest he think I don't know it, I take the opportunity to tell him. "I am strong!" I yell back. Then, with more than a trace of vulnerability: "But I can't be strong anymore." I'm sitting in a heap of sheets. He leans in to give me a hug (not easy to do given the IV and the pillows and the bandages and my semi-reclined position). 

I wish I could say that releasing my emotions made everything better, but that would be a lie. The pain — physical, mental, emotional — has only just begun.

RETCH & RECOVER

I hear a woman’s voice. She’s calling my name. Everything else is like peach fuzz. I try to bring her into focus but I’m laying on a gurney. In a room much like the pre-operative one, with a nurse’s station directly in front of me. Have I even had surgery yet? I’m confused. Thoughts float around in my head as though lodged in thick, groggy soup. A nurse types something into a computer to the left of my bed. She asks how I’m feeling; she takes my blood pressure. I try to force my eyes open, but a familiar sensation interrupts this task. The nurse quickly grabs a pink kidney-shaped basin. Afterwards, I close my eyes. The room spins. Another tidal wave hits. The pink basin remains at my side.

It seems I’m having trouble coming out of anesthesia. I’m aware — acutely — of how tightly wrapped my chest is. I’m snapped inside an oversized, papery purple gown with white bear paw prints running across it. An ace bandage and a whole lot of gauze compresses my new chest, which is now comprised of two temporary tissue expanders beneath my pectoral muscles (since all my breast tissue on both sides has been removed). Dr. C. has filled each expander with 400ccs of saline. The purpose is two-fold: to hold the space left by my now-departed breasts while I heal completely, and to give me a semblance of a chest, so I am not flat-chested after surgery. Both help with healing — the former with my physical healing; the latter with my emotional. In a few months, after the expanders are filled a bit more with saline, I will have a second surgery to remove them and put in permanent silicone implants. 

But for now, somewhere in the cobweb-like recesses of my brain, I remember to check under my right arm to see if it hurts. (Pain means lymph nodes were removed.) Because I can't reach under there, I focus my thoughts on my armpit. But I feel nothing. Yay! Turns out I’m just numb. Dang. I string enough words together to ask the nurse Is there cancer in my nodes? Her response disappoints. “I don’t know, honey. You have to ask the doctor.”

For the next couple of hours, I slip in and out of sleep between bouts of nausea. I can’t have water yet, so my throat is achingly dry. I start to shiver, and a hose is quickly attached to my pretty purple gown. Warm air swooshes all around me, enveloping me, and for a brief moment, I feel peaceful, even cozy. But it’s a momentary respite; my tummy is unrelenting. I'm given Zofran but it does nothing.

I can feel time passing. I fall into an automatic, Lamaze type of breathing — short, quick, rhythmic breaths in an attempt to tame my pain. In actuality, it just gives me something to focus on besides the nightmare I seem to have woken up in. And that’s OK. I’ll take the distraction.

Speaking of distractions, where is my husband? I look around; he’s not here. He’s never been here. Seems the nurses haven’t brought him in to see me yet. OMG. That means he’s been sitting in the waiting room the entire day with my mother and sister. Waiting. Worrying.

I open my mouth but can manage to eek out only two words: “My husband.” The nurse nearby ignores me. So I repeat myself. Still nothing. Oh. I’m only talking inside my own head! I focus hard on saying the words out loud; this time she hears me, and nods OK.

And like in a dream, when I reopen my eyes, my husband is standing beside me. It’s obvious I’ve been going through a terrible time; I look limp and pale as a noodle. (He later tells me that upon seeing me, he went back out to the waiting room and sent my mom and sister home, rather than have them see me like this. Good call.) 

My husband asks the nurse what meds I’ve been given so far, then suggests Ativan, an anti-anxiety medication that also has an anti-nausea effect. My surgeon, Dr. A., agrees with him, saying, “Good idea. Let’s try it.” Within minutes, the room stops spinning. My husband explains to me why: Nausea begins in the brain, not the stomach — which is why the Ativan works.

My husband the hero pharmacist strikes again.

My surgery has taken 4 ½ hours. I’ve been in the recovery room an additional five. We arrived this morning in the dark; it is now dusk.

(Copyright ©2011 Rennasus)

But what about my nodes? They removed several. All were negative. While we won’t know exactly what we’re dealing with until the pathology report comes back in a few days, both surgeons say there were no surprises. They got clean nodes and clean margins. This is as good as it gets. We are happy, despite all the day's drama.

I finally made it to the other side.

SURGERY DAZE

We’ve been up since 4:15 AM, Husband and I, and by 6 AM I’m laying comfortably in a bed on the second floor of the hospital, with an IV taped to the top of my hand (and yes, it hurt going in). My surgery is scheduled to begin in 90 minutes.

I feel very relaxed, considering. For the past four nights before bed, I have been listening to a meditation CD provided by Blue Shield (believe it or not) specifically designed to calm my pre-surgery jitters. It’s working. I employ the visualization techniques I’ve learned as I lay still —  in between the mind-numbing, repetitious medical questioning that’s been going on since I arrived this morning. 

Every person I encounter asks the same questions. What medications are you currently taking? Have you had any surgeries in the past? What are you allergic to? This gets annoying. Really annoying. It messes with my "relaxed" mindset. So I ask: Why the barrage of queries over and over and over again?

“Patients forget to tell us vital information,” the nurse explains. “And sometimes the info you give us gets entered incorrectly into the computer." Oh. So asking each time ensures everything is accurate? "Yes." OK, I get it. This labyrinth of cross checking and questioning is ultimately for my own good. But I don't have to like it. (This surgery is for my own good too; that doesn't mean I have to like that either.)

My anesthesiologist introduces himself. I let him know that Demerol and I are definitely not simpatico (it makes me terribly nauseous and dizzy). He says they don’t use Demerol anymore, but makes note of it anyway.

Finally, I’m wheeled down to a prep area on the surgical floor, where my husband and I wait in a large square queue of sorts with a dozen other patients having surgery this morning. All that is separating us is a thin curtain (like in an emergency room). You can’t see through the curtain, but you sure can hear through it! My hubby and I amuse ourselves by listening to the litany of complaints and problems and conversations on either side of our curtain.

My surgeon, Dr. A., stops by; he’s dressed in his blue scrubs. I make sure he knows how important it is that he take all of my breast tissue, on both sides. (The point in my choosing a bilateral mastectomy is to reduce my recurrence risk as much as possible; I don't want any tissue left behind that could house stray cancer cells.) He tells me not to worry. I like him and I trust him. He reminds me he is doing the sentinel node biopsy — he'll inject a blue dye near my tumor. The first (or sentinel) lymph node that absorbs the dye is removed and examined for cancer cells. If cancer is found, more nodes will be removed. If no cancer is found in the sentinel node, he likely won't remove any others. (In the not-so-distant past, women undergoing mastectomy were stripped of dozens of their lymph nodes, putting a heavier burden on the ones remaining and increasing the risk of complications like lymphedema.)

Major mental note to self: If I wake up from anesthesia and feel pain under my arm, my cancer has probably spread. (Little do I know that I won't be able to even feel my underarm; it will be completely numb — as will my entire chest and part of my back. Maybe for forever.)

As I am filing this shattering thought away, The Prince of Surgery (AKA my plastic surgeon, Dr. C.) arrives. It’s 7 AM and he’s wearing a dark blue suit, a crisp white shirt and a perfectly knotted tie. My initial reaction is to tell him how fabulous he looks. But I’ve got something else I need to get off of my, umm, chest.

  

I want to go a little bigger.

I know my breast cancer sistahs will howl with laughter when they read this; they are the only ones who can truly understand the phenomenon we have dubbed “boob greed.” But I need Dr. C. to know, in case going just "a little bit bigger” will alter what he is about to do right now. He assures me it will not. “There is plenty of time for that later,” he says. “Today, let’s get the cancer out and the tissue expanders in.” 

And on that note, he pulls out his black Sharpe and proceeds to mark up my entire upper torso, tracing the outline of my boobs and marking their position in great detail. When he's done, I look like a grade school art project gone haywire. (Makes me wish I had my camera.)

Dr. C. leaves my bedside and my anesthesiologist reappears. It's time. I kiss my hubby goodbye with tears in my eyes and leave him standing alone in the hallway as they whisk me away on my soon-to-be magic carpet ride.

But I’m not feeling it — the happy juice, I mean. I am completely, 100% lucid. I make idol chitchat with the nurse guiding my gurney as he makes a sharp left and then an immediate right, wheeling me straight into the operating room.

It’s bright, and very cold. A nurse asks me to slide myself off the gurney and onto the (quite narrow, I might add) operating table. This isn’t easy to do, especially since my arm is attached to an IV; then I realize they haven’t yet given me the “juice” — or they wouldn’t be asking me to “scooch.”

They place my arms on narrow extenders that swing out from the sides of the operating table. I close my eyes and visualize myself standing at the top of the hill where I love to hike. I breath deeply. I can hear voices around me. Then all falls silent.

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!

HUMPTY DUMPTY

Surgery day is getting closer, and I'm beginning to worry about everything. (If you knew me, you'd know I have been worried about everything for forever, so how could I possibly worry any more? Well, I do because I can. Or is it I can because I do?)

My older sister has flown into town to help with whatever is needed while I'm having surgery and recovering. YAY! She is also here on business (she has a client nearby), but will provide the greatest benefit by assisting my mother (who no longer drives and is dependent on me). In theory this is a splendid idea — move the load of responsibility off my shoulders and onto my sister's. 

However, sister doesn't know how much there is to be done. She tells me in an email that she will call me during the car ride to her work appointment to discuss any details. There is no  way we can go over everything on the phone and without her writing it down. 

So I write up some lengthy notes and take them over to my mom's. The three of us — me, mom, sis — sit at the kitchen table as I try to explain everything that I'm worried about: my mother's medical appointments, her upcoming taxes (which haven't yet been started), her bills (which I facilitate paying), her bank statements, her prescriptions (which I pick up) ... the list goes on. Both my mother and sister tell me the exact same thing: do not worry about anything. Huh? Aren't they listening? I'm the only one who knows how the bills are currently being paid. I'm the one who knows what's currently happening with my mother's health. (My mom, bless her heart, tries not to think about any of these details and therefore does not remember much about any of them). 

But somehow, I'm now supposed to simply stop worrying and focus on my surgery. Everything will be taken care of. Just like magic.

Well, I'm not buying any of it. 

Because here's what will happen: I will be out of commission for a few weeks while my mind is on my own healing. My sister and mother won't know (or recall) what is supposed to be taken care of if I don't tell them. Things will fall through the cracks. And when I finally re-surface, I won't remember anything either. Then my sister will fly home and I will be left with the fallout and the pieces.

What, me worry? That's crazy talk.

Maybe if I allow them to help me solve a small problem I see on the near horizon, they will "get it." So I tell them how friends and neighbors want to bring me meals, and that I would love that, but if I can't make a sandwich for myself, how will I be able to get out of bed and go downstairs and answer the door while also getting our two adorable but ferocious barking machines (otherwise known as dogs) to go outside so I can let "person with the food" inside without their being pounced on (or worse, if the barking machines don't like them, nipped at). OH, they say. That IS a problem!

These are but a few of the details I am stuck on in the days preceding my surgery. I am consumed with worry about everything because I somehow feel everything is my responsibility to worry about.

Then it hits me. Things are going to have to change or I will never get through this ordeal. I'm going to have to learn how to let go. I'm going to have to give up worrying. Cancer's going to have to "cure" my desire for control.

Right. Just like Humpty Dumpty learns to effortlessly dance along the edge of a brick wall.

MANAGING CHAOS

I have a surgery date. Yeah! The scheduler gives us one of the dates my husband requested. Guess it pays to slow down, keep your wits about you, and ask for what you need.

A sudden calm melts over me when I hear the news. I haven't felt this focused since before I learned my mammogram was weird. It's amazing how having "a plan" brings with it such a feeling of control. It's like stumbling on a well-worn trail when you've been lost for weeks in the woods.

But in order to keep my calm, I have to learn how to manage my chaos. I took cancer from an angry rolling boil down to a simmer by determining the who, what, when, where, why and how of my diagnosis. This not only gave me a path and a direction, but a sorely needed compass.

Once you figure it out, managing your cancer chaos gets much easier.

The who, of course, is your medical team — who will your surgeons and physicians be? Your life depends on your choice and their expertise; choose wisely. Make a list of every question you can think of (I found The 10 Best Questions for Surviving Breast Cancer, by Dede Bonner, M.D., to be very helpful).

Take someone with you to your appointment who is a great listener and note-taker, and afterward, listen to your gut instincts. Get more than one opinion if you feel unsure about anything. Remember, you know yourself and how you process things; this is NOT the time to shortchange yourself. Give yourself as much time as you need to think things through and talk things over with your trusted confidants. As my surgeon wisely said to me, "Your cancer has been growing for years. Waiting a few more weeks to make sure you are making the best decision for you will not make any difference at all in your treatment."

Ah, the what. Uncertainty is a killer of the soul — and cancer courts uncertainty with devilish and unbridled abandon. Waiting for results that reveal whether or not you have "The Big C" is excruciating and, honestly, the worst part of the whole dang process. 

Once you know what you have, you can proceed to the biggie, when — everything hinges on knowing when surgery will happen. Don't have any procedures you are not ready to have. Doctor's offices will work around your schedule. (See OPERATION WIG-OUT for more on that.)

Next up, where will surgery be? Once you know the hospital, you can start stringing all the missing medical pieces together and making sense of the cancer process. 

Last but not least (and forever shrouded in mystery) is the why and how did you get cancer? My friends, you will never know. But you'll still spend countless hours contemplating what you might have done differently. If only you had exercised more, eaten less, taken vitamins, lived in a less-polluted area, worked at a less-stressful job, had more fun, never used a cell phone, left a bad relationship sooner, started menstruating later, used a different antiperspirant, thought more positively, felt less negatively, meditated more, partied less, prayed more, worried less, slept more, feared less... blah, blah, blah. The list is, well, endless. 

If not getting cancer was as simple as not doing this or that (or even a combination of this or that), then the people that already aren't doing "this or that" wouldn't also have cancer! (And we would have a cure.)

As one who has swum in the wicked whirlpool of why, my advice to anyone struggling with a cancer diagnosis is simple. Save your energy for the positive things you can control. The entrance to crazy land lies just beyond the moment we are living in right now, so stay in this moment as much as possible. Oh, and make time for meltdowns.

Like a 12-Stepper, I have learned to dance with my cancer one day at a time. I make an effort not to get mentally ahead of myself. And in that small space, people, is where my peace resides.

What's next? Pre-op Road Trip!

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.