CYBER SUPPORT

My first blog logo, circa April 2011

It's been nearly three years since my first blog post hit cyberspace. It was April 2011, and I was in the thick of my frustration, anger and sadness following a breast cancer diagnosis. If I didn't write down what I was feeling, I thought my head would explode. Blogging became a natural way for me to process my cancer "situation."

I wasn't always aware of what I was dealing with; enlightenment often came after I hit the "publish" button. Writing is weird that way...

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.

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.

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.