ACROSTIC BREAST CANCER, DAY 13

DAY 13 of the #HAWMC challenge: Write a health "acrostic" (acrostic = a poem where every letter of a word serves as the first letter of a word or phrase) for my health condition. Since I write about breast cancer and reconstruction, I've combined them.

BILATERAL

RECONSTRUCTION:

ELECTIVE,

AGGRESSIVE

SURGICAL

THERAPY.

CANCER

ANNIHILATES

NORMALCY,

CREATING

EGREGIOUS

REPERCUSSIONS.

CELEBRATING THE ORDINARY: Day 1

I'm taking part in a one-week blogging challenge that was started by Marie over at Journeying Beyond Breast Cancer.

As Marie puts it, this challenge is "about celebrating the ordinary simple things we can sometimes take for granted each day. Will you join me in finding one thing each day to take a picture of to remind us of the simple ordinary pleasures in life?"

So of course I said YES! If you have a blog too, you can join in by posting your photo on your blog and then leaving a link at JBBC. If you don't have a blog, you can still participate; just go to Marie's Facebook page and upload your photo there. Marie will be posting everyone's photos on Facebook as well.

This little duck symbolizes the past two summers I've been physically and emotionally staying afloat while navigating the wonky waters of reconstruction. I've had to do a lot of wading (and waiting) while my body took the time it needed to heal. For the most part, I've been able to chill out with a smile; after all, I'm still here. Still swimming. Still enjoying the sunshine. So many others are not. 

I am a lucky duck.

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.

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!

DECISIONS, DECISIONS

Vegas did a number on me. (OK, it wasn't Vegas that did it — it was the possibility of needing a double mastectomy.) I am on edge, on the verge of crying, and short-fused. It's a bad mix. I need a solution. Fortunately, Dr. A. is true to his word; he calls Dr. C., the plastic surgeon, over the weekend and I am fast-tracked into an appointment  on Tuesday afternoon. My BFF accompanies me to take notes. 

I like the guy instantly. He asks me to begin with my list of questions because he says he can tell from what I ask how informed I am about breast reconstruction, and this allows him to tailor his answers specifically to me. I love the approach; it makes me feel more in control. He's also very easy on the eyes. (OK, so that's not why I chose him but it's not such a terrible side benefit, is it?) The night before my appointment, I comb through The 10 Best Questions for Surviving Breast Cancer (it’s more like 200 questions, actually) and create a long list. Dr. C. patiently listens and carefully answers every one of my questions. He spends nearly two hours with us. 

Though I have just met him, I decide that if it comes down to needing a bilateral, this is the man to make me look whole again. My BFF feels the same way. (Yup, she agrees he is adorable and the right guy for the job. It's good to have friends with your best interests at heart!)

The Possible Plan (should I need it): Immediate bilateral reconstruction using tissue expanders with a later surgery down the road to exchange the expanders out for silicone implants. (Silcone had issues back in the 1980s, but Dr. C. assures me they are very safe now and prefers them over saline because they are the most natural looking.)

I am thrilled to have my surgical team in place. Now I can focus on figuring out what kind of surgery I need so I can get this cancer out of me. I've been very patient up until today. Now I want it gone. 

The next day is my MRI. I am claustrophobic, so I have to mentally get past this. A technician has me lie face down, with my boobs hanging through holes in the imaging table. (Do the humiliations ever end with breast cancer?) The machine makes clanking noises while I stay perfectly still. I shut my eyes and imagine I am hiking on my favorite trail in the wide-open spaces. I keep my eyes closed the entire time. Fooled even myself; I nearly fell asleep.

I arrange to pick up copies of the MRI films two days later and then take them to my surgeon Dr. A., who gives me the bad news: it's clear from the MRI that due to the size of my mass (3 centimeters), a lumpectomy will, in fact, leave me disfigured. So one week after hearing that I might need one, I bite the bullet and give the go-ahead for Dr. A. to schedule a bilateral mastectomy. 

Dr. A. and Dr. C. will work side-by-side in the operating room; Dr. A. removing breast tissue and any necessary lymph nodes, Dr. C. starting reconstruction by placing tissue expanders under my pectoral muscle to keep my skin inflated while I heal (and eventually filling the expanders with saline over a period of months, then another surgery to swap them out for permanent silicone implants). And this is all going to happen in less than two weeks.