Thursday, October 18, 2012

One year today

A year ago this exact minute, Andy and I were sitting in the waiting room of my surgeon, waiting (as you do in such places). Waiting to hear confirmation that the tissue removed during my biopsy was, in fact, scar tissue. We waited so long, and I was so nervous I couldn't even knit. Somewhere in the back of my mind I knew. I won't retell the whole thing, as it's here. But oh, how much I remember Dr. Stewart's face when he came in. How he slowly sat down and said "unfortunately, we've found some carcinoma." How Andy took an involuntary step backward, then put his hand on my back. How the whole room felt as though it tilted on its side, and all the air was sucked out. Yeah, I remember. Endless sleepless nights spent crying. Trying to keep from waking Andy, yet somehow he always knew, even when I would go into the living room and rock, trying to sob silently. Holding it together in public, for the most part. Having to tell people. How nearly impossible those words were in the first, early days - "I have cancer." Then how they would spill out at improbable and sometimes inappropriate times, as though once my lips tasted the truth they could no longer contain their poison. "I have cancer." Cancer. That loaded word. The one that seems to cause others to need to distance themselves, as though negating their own risk.

In that year I've been through my own personal hell. I've had my entire torso rearranged, gone through indescribable pain (both physical and mental), and begun the long, slow process of putting myself and my life back together. I'm still dealing with complications from surgery - phantom pain and maddening itching of the reconstructed breasts, median nerve irritation, axillary web syndrome, and shoulder impingement on my right side, numbness around my belly button, and constant fatigue. I am coming to realize how much stamina I've lost, and it's going to be a long process to rebuild that.

I've also learned more about myself and the world around me than I could have imagined. I've made new friends and learned things about my existing friends and family. I've discovered a well of strength I never even dreamed I possessed. Through all this, while I've had days when it seemed as though I couldn't stop crying, I've never broken down in public. I've never told off someone who made inappropriate comments, never asked someone to please stop telling stories I'd rather not hear, never (at least I don't think), been rude even when inside I was screaming.

Today, I have finished 4 months of physical therapy for the complications (though I will have home exercises for a long, long time). I have finished all treatment except the touch-ups on my areola tattoos, and I only have to return to Birmingham every 6 months for checkups with my oncologist.

I have made huge changes, and I am sane and stable, something I never thought I'd be able to say. I am not nearly as reactionary as I used to be; cancer is so huge, and with everything I've had to deal with, most things now are so trivial that they can't compare. I sport brightly-colored bangs, jeans that fit (and look great, if I say so myself), and don't care so much what others think. I'm learning to LIKE myself. Andy and I are closer than ever, which I didn't think was possible after nearly 20 years together.

I just answered a friend's message with these words: "The glass IS full, not just half. I am so very different, and while I will never see cancer as a gift, or believe that the changes are worth what it took to get here, I can still embrace them. In some ways, that lack of certainty makes every second that much more precious."

Thursday, July 12, 2012

Brain reboot, with pictures!

Recently I was sick. Actually, I was *really* sick. Like, if I hadn't had my own nebulizer, I'd have been at the ER Saturday before last. My doc stopped short of Dx'ing pneumonia, as he didn't want to bother with a chest xray when it wasn't going to change the treatment. 

So I lost about a week and a half to this bug. I was nearly bedridden the whole time, so basically I slept, coughed, and watched a lot of mindless TV. I barely even knit.

It's almost like this forced rest caused a reboot to my brain, and in a way, to the universe. As I started to improve last Thursday/Friday, all sorts of amazing things started to happen. The first was that I got an etsy convo from the owner of Mrs. Hudson's Yarns and Teas in Bellinham, WA, asking if I could do wholesale. I mathed (all by myself!), took out the fees I pay to etsy and PayPal, did multiplication, etc. and realized that YES, I can. I was pretty amazed by that, let me tell you. So we back and forthed for a few days - she's pretty cool - and in the end, she's ordering enough that when I added up the number of individual pieces (she's ordering sets of stitchmarkers), I realized there are 300 to be made! I'd already spoken with the owner of Unwind in FWB about consignment - we have a few things left to hammer out, but that will be happening too. Plus I was invited to teach at Unwind - I love teaching, so that's really exciting.

In the week since the first wholesale inquiry, I have gotten three more bulk requests. I'm working on prototypes for the first two and waiting to hear back from the third. My brain is percolating overtime with ideas, and I am so busy I can't figure out when I'll fit it all in - but for the first time in years, I feel truly happy. I laugh all the time, and have decided I'm celebrating a second childhood.

Until fairly recently, I've been in such a haze of grief that I couldn't see straight. But starting with my spontaneous self-haircut, it's like I am finally allowing the lessons grief has for me to come through. A huge one is BE FEARLESS. No more holding back who I am because I think someone won't approve. No more trying to be anything I'm not. No more spending a millisecond with toxic people, no more allowing others to harsh my mellow by putting their well-being above mine and not calling them on assholish behavior. But by the same token, BE PATIENT. Remember that I never know the fullness of anyone's story - this was proved to me as I came to understand how long I must have walked around with cancerous tumors growing in my breasts and never even suspecting. And by how normal I was - am - able to act in public even with cancer and its aftermath; this reminds me that everyone has a story, and sometimes it's ok to excuse someone for being a jerk. 

Now, for those who've asked, my new haircut! The glasses have no lenses, as these pix were taken at the eye doc's office of the glasses I ordered. Yes, they are dark purple on the outside and chartreuse on the inside! Also, the bluish bangs are going soon. I'm contemplating bright screaming read all over.

Saturday, June 16, 2012

It all started with a book, and a haircut.

I'm reading a pretty amazing book right now: Five Lessons I didn't learn from breast cancer (and One Big One I did) by Shelley Lewis. The basic premise is that not everyone has a huge spiritual epiphany from breast cancer. Not everyone suddenly wants to sport all things pink and in fact, some of us get downright pissed. For many of us, cancer affirms who we already are, and enables us to draw on inner strength and skills we've spent a lifetime learning. Shelley is snarky and brutally honest, two traits I admire (and possess)! While our specific cancer and treatment was different, our inner thoughts are eerily similar. Her words helped me solidify a lot of things I've been thinking but just couldn't manage to convey, even to myself: yes, I had cancer. Yes, it changed some things about me (more on that in a minute), but what it really did was solidified who I already was. I am not - and do not need to become - fundamentally different. I like who I am!

I've heard it said that when confronted with a life crisis, many people who self-identify as agnostic or atheist will turn to religion. As a self-professed agnostic (often bordering on atheist), I had no idea whether that would be true for me. But not long ago I realized that not once through this entire crisis had I fallen to my knees or turned to a "higher power." I believe that I have softened, become kinder, more understanding about some things (and much more annoyed about others), but I have not suddenly found religion, nor do I think that's likely to change. What I did discover is that I have an immense well of inner strength that I never dreamed possible. I joke that if "what doesn't kill you makes you stronger" then I must be Hercules, but now I know that for me it's the truth.

That said, I have also discovered that when the constant stream of doctor's appointments, surgery, treatments etc. wind down, the brain kicks into high gear. From Shelley's book: "When you're in the middle of treatment, you've got a team of doctors working with you and you put your head down and do what has to be done. It's actually scarier when it's all over... " This is my truth as well as many women I've spoken to. Suddenly there's nobody doing for me, telling me what comes next, giving me instructions on how to handle whatever's going on. Now I'm on my own up here in my head, and that's a dangerous place for me to be alone, let me tell you. Since last September when I had my first abnormal mammogram, I've been waiting. Waiting for tests and more tests, results, surgery dates, pathology results, healing, more surgery, more healing. Even now, 4 months out from my mastectomy and a month out from revision, I'm still healing and waiting. I can't buy bras yet, I can't buy pants yet (my hips are still hypersensitive at the ends of my abdominal incision), and I'm still in pain. I can't go braless for any length of time or my chest aches. I still have a few stitches from revision. 

But today I realized that there are improvements. I'm not really sure what clicked in my brain, but whatever it is I welcome it, because I realize that with it comes a feeling I'm completely unfamiliar with on this journey: the beginning of acceptance. Shelley describes what she calls "controlled panic" like this: "I look calm on the outside, but I'm mentally stripping off all my clothes and running naked down the street screaming 'Help!'" What a perfect way to describe the state I've been in for almost 9 months. Having cancer, a woman in Shelley's book says, is "like having a news ticker that's always running across my brain, displaying the words 'you've got cancer.' I go about my life and try to act normal but really, I can't think about anything else." Except for the first time since the beginning, I can. I can hang out with friends and talk about their goings-on, about knitting, about learning to spin my own yarn. I can joke, I can laugh, I can dye my son's hair bright blue and make up late-night jokes with him. And through it all I glimpse moments of grace, of realizing later that I've gone hours without thinking about cancer. 

So, the haircut. I'm a member of a group that's curly-hair obsessed. I used to be pretty damn obsessive about stuff like hair and nail polish, but then cancer got in my way and all that fell to the wayside. Recently someone asked what I'd done with my hair when I was in the hospital, and when answering her, I realized that not only had I not cared a lot about my hair since my mastectomy, I'd largely been wearing it up and I really didn't like it anymore. It never looked good no matter what I did to it. A month or so ago when my son wanted to bleach and dye his hair, I had a fit of adolescent pique and bleached my bangs (not that they qualify as bangs when they're past my chin) and started playing with all kinds of fun temporary colors. I realized it was a thing I could control, and I had a blast with it. But then when I was posting in my curly-hair group, I realized that I wanted to feel pretty again. I can't speed my body's healing, but I can do something about my hair, petty as it may seem. So I gave myself a haircut! Curly Girl by Lorraine Massey and Michele Bender includes a chapter on trimming one's own hair, and a DVD with a short demo. Using their technique, I lopped a bunch of hair off. I'd been trying to grow it out, but I'm thinking maybe I'm not destined for long hair, as it just never looked great.  (I'm not sure how long it is wet, but it's roughly chin-length dry now.) Last night, I got actual compliments on my hair, and not just on the purple/blue/teal gradient I have in my bangs, either! It was a great feeling, because I took control of something and just went for it. Is it a professional-grade cut? Hell no. But I like it, and that's what matters. Something about this hair thing, about taking control of something and liking my hair again has had pretty far-reaching effects that I couldn't have imagined. That acceptance thing. Some self-esteem, which is really hard to come by when you've had your torso basically rearranged. And yes, even some joy.

There's another thing that I've debated talking about, but I'm gonna give it a shot. 

I'm one of those people who needs to hear words. I need people to speak slowly and spell things out for me when it comes to feelings; I'm crap at reading gestures. I'm married to a man who speaks fluent gesture, however, and somehow I never get it. I'm always terrified that one day it'll all be too much for him: my crazy brain, my defective body. Now cancer and the loss of my breasts. My self-worth has been so shot that nothing he ever said or did got through to me, because I finally, finally get that it was never about him - it was always about me not believing I deserved this incredible relationship we have. Recently he left on the first business trip he's been on since my diagnosis, and I was a mess. I knew it would be good for him to have a break from my constant neediness, and that I had to start standing on my own and not relying on him for everything, but I wasn't sure I could. 

The other day he sent me a beautiful bouquet of flowers, and I broke down and sobbed. I called him and it took a minute for him to understand me, because I was completely unintelligible. Why that simple act of him sending flowers, of the little card in someone else's handwriting that said he missed me, broke through my addled brain in a way nothing else ever has, I can't say - but it did. I get it. Finally. 

See? Acceptance. 

Monday, June 4, 2012

Cancer's best-kept secret

I've recently discovered that cancer has many, many secrets. I'm not talking about the medical ones, the ones best left to researchers and doctors. I'm talking about the ones hidden from everyone - researchers, doctors, caregivers, and yes, patients and even survivors. The secrets that are rarely brought out in the open. The ones that are hidden behind the curtains, under the blankets, and even under our clothes.

I think I know why this is so. I think it's because only other cancer patients and survivors really, truly get it. To an extent, those with some chronic conditions or who have been through life-threatening illnesses do too, but cancer is its own beast. There are far too many preconceived notions about what it means to have cancer and what it means to be a survivor, and the media isn't necessarily helpful, because so many of us are portrayed as overwhelmingly positive, as WARRIORS (caps because that's how it always comes across to me), as somehow out of the ordinary.

The truth is, people who are diagnosed with cancer are ordinary folks like you and me who've had some crap luck. I've looked at people who portray themselves, or who are portrayed in the media, as “warriors,” “fighters,” etc. and who seem so positive, and now I know there’s more to it, because I've been told repeatedly that’s how I look from the outside. I honestly had no idea, because I’m here, in my head, living the truth. And the truth is, I don’t see myself as a warrior, or a fighter, or any of those things, and I’m far from upbeat and positive!

I've learned that when active treatment comes to an end, many people hit the wall of grief, and all the emotions that were suppressed due to the “busy-ness” of being a patient come roaring back. My husband told me the other night that the day of my mastectomy, he was floored at how I strode in (tiara and all) and owned that room. How I was just able to DO something so massive. But he’s realized now, as I am (not so) slowly falling to pieces, that what I was actually doing is not looking to either side or behind, but just putting one foot in front of the other, plowing through each step as I confronted it. It’s only now that I have time to take off the blinders, blink in the sunshine and think “holy hell, what have I been through?”

I am not happy with my body. My entire torso has been rearranged - while one day I'm sure I'll be pleased with the flat tummy and less-flabby hips (I had fat liposuctioned for a graft to my upper left chest), right now I'm still in pain, can't shop for pants that fit, and have to wear an extremely uncomfortable compression garment for four more days. And the foobs. Ah, the foobs. Someone told me that they were sad that I felt it necessary to call them that, but that's what they are. They are (mostly) breast skin, over abdominal fat/blood vessels. I no longer have nipples, but rather abdominal skin built to look like them. They are still the color of the rest of it, and the left one was just made, so I still have stitches there. I have no feeling, and I never will - this isn't like many surgeries where feeling comes back eventually; a mastectomy means the total loss of a major erogenous zone. Another secret - this is something you're told prior to surgery, but nothing can prepare anyone for this reality. Four months out from my surgery and I still can't assimilate it. Hell, I can barely assimilate that I had cancer in the first place! My husband tells me that I keep saying the words as though I've just discovered it, which in a way is true. Over and over I'm assaulted by this mass of flesh on my chest that doesn't feel like a part of me. (It doesn't help that I had a great rack before, either!) My goal is to reach acceptance one day. Even my therapist agrees that acceptance may be the best I can ask for - but it beats the hell out of the place I'm in now.

I told both my husband and son that I feel selfish. That I’m terrified everyone is going to get sick of me. I said that it’s my job to be the best wife, mother, friend, forum moderator, employee (insert other roles here) that I can be, and to be there and strong for everyone else. It’s what I DO. I don’t know another way to be - to tell the truth that I’m falling apart, that I’m scared to death of the magnitude of my own grief, that I felt as though I was heading toward a break with reality recently? That’s the stuff of my nightmares. Putting it out, making the choice not to hide it, takes just about everything I’ve got. My public face snaps into place without conscious thought on my part - I'm told that I'm one of the most "together" people some of my friends have ever met, and I don't know what to do with that information when it doesn't match what's going on in my head and heart.

My therapist gave me homework today:
  1. Stop analyzing everything to death. If I catch the cycle starting, yell “STOP” in my head, or even out loud if I need to. 
  2. Take naps. Naps are not “giving in” to depression, they are healing. 
  3. Make things. I have a head stuffed with creative ideas, but I haven’t managed the energy to translate them from ideas to THINGS.
  4. Journal, journal, journal. Which for me will be blogging, but that’s good too.
  5. Take a break from all things CANCER once in awhile, which includes not sitting in front of the computer so much.
Along those lines, I hope to blog more often, as part of the above homework. It helps to know others are reading, and to hear that my words make a difference out there.

Tuesday, May 8, 2012

Thoughts on safety and comfort zones

A friend who is also a new breast cancer survivor and I were talking today about safety and comfort zones. Our conversation was so important, and since my husband and I have also talked about it, I think it's important to put here so others can read it. This, I believe, is The Thing that anyone who hasn't been diagnosed with something potentially fatal cannot grok. They can love us through our journey, but this is what separates our understanding and theirs.

Once you have cancer, there is no comfort zone. Once you've knowingly walked around with tumors in your body, even (as in my case) if they're pre-invasive, you know your own body is attacking you. You can't go "damn, I don't like my job, I'll let Calgon take me away when I get home" because you drag that body, those tumors EVERYWHERE YOU GO. And that knowledge rarely lets you have a moment of peace.

I'm going to put something out that I didn't want to talk about early in my journey, because I thought that some well-meaning person might try to have me committed for it. Not long after my diagnosis, before I knew I had tumors in both breasts, and before I knew that it had been caught before it spread, I walked into my kitchen and I opened the knife cabinet. I stood there and stared at the knives, wondering if I had the nerve to cut out my own tumor. It took a little while for any type of logic to penetrate and even then, said "logic" was only "if the doc can't feel the tumor from the outside, if you know there is no palpable lump, how exactly do you propose to find this thing by yourself?" All I knew was that if I could get to it and cut it out, I could feel safe in my own skin again. That was all I cared about, all I wanted. Of course I didn't do it - I didn't even take a knife out of the cabinet and hold it. But oh, I wanted to. So much. I collapsed on my kitchen floor and sobbed. I felt so alone in that moment, because I didn't even feel safe enough to tell anyone what I'd done, what I wanted to do, and how terrified I was.

Later, after you have chemo, take meds, get your torso rearranged - whatever your treatment is - you still live with the knowledge that your own body has betrayed you this way, and it can do it again no matter what you think or do or say. And even if you don't live in neverending-constantly-thinking-about-it-fear, that fear is always there, buzzing at the back of your mind. And even if you never thought you'd die from YOUR cancer, the reality is that people die from it every day, and there but for the grace of god and all that toddle. 

So a cancer patient has no comfort zone, not really. We have to work harder, strive further, trust more, be stronger, cry more tears, to reach any sort of comfort. But safe? How do we define that now, as survivors?

I welcome your thoughts!

Thursday, May 3, 2012

12-week update

Two weeks from today I'm scheduled for revision surgery. Things are uneven, I would like a nipple on the left, and there's a couple areas that have healed oddly. I'm told it'll be about an hour and a half. So really, in the grand scheme and compared to what I've already been through it's nothing, right? And yet, like a PTSD patient, I'm starting to get more nervous by the day. Feels like I could be building up to a huge freak-the-hell-out episode.

Let me back up - it's been more than two months since I last posted. I always have grand intentions - I start out like gangbusters, then fizzle. Happens every time.

Physically, I've healed incredibly well. I've gone from my mom walking me once around the cul-de-sac before I was worn out to going for 2.5 mile, very hilly walks with my son. I can sleep in whatever position I want. I can lift, twist, move however I want. I can cook, knit, clean... in essence, I can do just about anything now that I could before surgery.

But there are things that are different. Some are transient, and others I'll have to get used to, because if they change, it probably won't be much. Many of them are things I wish I knew before. Not because I would have changed my treatment plan, but because I would have felt more mentally prepared. Here's a partial list of things I wish had been in my pre-op booklet, or things I wish the docs had told me could, or would, happen:

Arm pain. When I woke up, and for weeks afterward, my arms hurt. It took more than two months for me to regain full range of motion in both arms, and it was a very painful process. And once I'd gotten to that point and thought it was all over, I started to develop painful cords in both underarms near my sentinel node biopsy scars; this is a complication many women develop after a mastectomy, and no doctor seems to discuss beforehand. I had no idea what was going on - it's a condition called Axillary Web Syndrome. Andy has helped me stretch, massage, and use the EMS unit, and it's almost gone. But it was extremely painful (and nowhere near the severity of the pictures at the above link), and it would have helped tremendously to know ahead of time what it was, and what to do about it.

What areas I might not have feeling. Yes, I knew - in theory - that I wouldn't be able to feel the foobs (fake boobs, or in lefty's case, frankenboob), but theory and practice differ by miles and miles. From top to bottom, a rundown: at the beginning, in the shower, I could only feel one of the shower jets, one very small one, below my right collarbone. And that small area was so hypersensitive as to be nearly excruciating. Now I can feel the whole shower, but I don't love it. On the right, same area, there is almost no fat padding (something that will be fixed during revision), and I can feel my top rib. It almost always hurts, and I can barely stand to be touched there. The hypersensitivity has decreased - until recently it hurt to even wear a necklace - and the constant pain in my sternum has decreased as well. No feeling in the foobs at all, except near the bottom, but if I go braless for any length of time, I feel as if I'm wearing a tight harness across my chest. It's very uncomfortable, and while my doctor said there's no reason for me to need a bra 24/7 anymore, I absolutely cannot stand to be without one. No feeling in the bottom half of my armpits, near and including the sentinel node biopsy scars (I had to relearn how to shave my armpits!). No feeling around my bellybutton (which I discovered to my horror is not my original one, but a newly reconstructed one. I can't tell you how completely weird that is!) for about 4" on either side, and 2-3" above and below. Feeling is intermittent along the abdominal scar, which goes hip to hip. The very ends of it are very sensitive, which makes clothing difficult. 12 weeks out and I can still barely tolerate button/zip pants, and most of what I wore before surgery still doesn't fit correctly, despite the huge amount of abdominal fat/skin taken, and the amount of swelling that's gone down. I really expected to go down two pants sizes immediately, and it hasn't happened - yes, my lower abdomen is completely flat, but my middle abdomen/waist are not. It's really strange. I think that may change during revision, though, as there will be fat liposuctioned out to graft into the area on the left that needs padding to match the right.

This one isn't realistic, I know. But I wish I could have been better prepared for how I would feel. I want to be grateful that, as close to "cured" as a breast cancer patient ever is (they call it NED: No Evidence of Disease), that's where I am. I want to be happy, joyous, thrilled to be alive and not need chemo, radiation, or Tamoxifen. Instead, I am sad. I don't like looking in the mirror and seeing my Frankensteinian body. At my first Relay for Life event, I cried through the Luminaria ceremony and told a friend "I don't want to be here in the purple shirt." Wisely, she replied "it's better than being a balloon." (Balloons were released to honor those we've lost to cancer.) I am getting better; I have finally taken off my "CANCER CAN SUCK IT" bracelet, and am not feeling the need to go back to wearing it 24/7. My doctors, therapist, and amazing spouse all think that I'm going to feel so much better after revision surgery, as I'll have two nipples, be much closer to natural asymmetry (because nobody has perfectly symmetric breasts), will be that much closer to done with constant procedures, and will finally be able to shop for proper bras and pants once I'm healed. I hope they're right!

Please don't mistake me: I am happy to be alive, and grateful that I don't need further treatment. But I'm only a little more than 6 months out from my diagnosis, and I'm told that it can take a very long time to assimilate it all. To really understand that I am now a cancer survivor, with all that entails - which is a lot! Those who've never had a doctor look them in the eye and tell them they have cancer cannot grok this (nor do I want them to!). It is nearly impossible to convey the feeling of being utterly procedured-out, to burst into tears at the mere thought of yet another needle, test, doctor visit (much less surgery), and the constant underlying fear that one of those tests will reveal that IT'S BACK. A survivor at Relay told me that it eases as each year passes until by the magic 5 year mark, one can almost feel "normal" again. On one hand, that validation is amazing, but on the other, I don't want to have that constant buzzing going on in the back of my mind.

At the same time, there is joy. My relationships have grown closer - my husband, son and I are an even tighter unit than before, something I wouldn't have imagined possible. I've learned to trust my friends, to open up to them about my feelings, to stop having such a strong "public face" that nobody realizes what's really going on. I have the relationship with my mom that I always wished I would. I've also learned to take much better care of myself. I no longer spend hours doing things that make me miserable, and I no longer resent things that drove me crazy before - necessary things that I spent far too much energy hating. These things, I would not trade for the world.

I have no idea what I want to do with myself, but I do feel creative energy building back up, which is such a blessing, because I've missed it tremendously. I cleaned my studio and made workspace available, and I'm amassing lots of ideas. I'm knitting again (I lost my knitting mojo for awhile after surgery), and that helps keep me sane. I'm also exercising and eating better, which makes me feel proactive about my health. Plus I'm learning about the politics of breast cancer, and trying to help educate others. One day I hope to become a volunteer for the American Cancer Society's Reach to Recovery. I also hope to blog more regularly (we'll see how that goes)!

Wednesday, February 22, 2012

Get out your eyedrops, this one is going to be long!

Ok, deep breath for the huge catch-up post! I'm on my laptop today, able to sit at the kitchen table and type, which makes it easier. I couldn't fathom trying to do this from the tablet!

So, up to speed.

Tuesday, February 7th: Andy and I head up to Birmingham, where we first meet with Dr. Fix and his resident, Dr. Killingsworth (where do they get these names for plastic surgeons?). We discuss any further questions regarding the surgery, then I get marked up in blue Sharpie. The markings include lots of what looks like code, where Dr. Killingsworth identifies the major areas of blood supply on my abdomen as they showed up on the CT angiogram I had done a couple weeks ago during my day of pre-op testing. I ask Andy to take a picture before bed, but I haven't decided whether I'm going to post any of the pictures yet.

After the markings are done, I go to Nuclear Medicine for a lymphoscintigraphy (not necessarily for the faint of heart - but if, like me, you're incessantly curious about this stuff, go for it. There are no pictures), which is the procedure done to identify my sentinel nodes (the ones that, if the cancer has spread, it would go to first). Some of these nodes will be removed during surgery to check for spread. The procedure takes about an hour per breast, and while the folks who work with me are absolutely wonderful, including letting me use my own handknit blanket and gushing about my knitting, the procedure itself sucks. Between the two sides, I'm allowed to get up and move around, as I have to stay so still while they're working. I see a piece of paper nearby with my name and birthdate and in big bold caps the words DIAGNOSIS: BILATERAL BREAST CANCER. Obviously this isn't news or anything, but something about seeing it that way - so stark, so simple - begins crumbling my hard-won calm. I make it through the second part of the procedure, and am delivered back to ever-patient, ever-waiting Andy. He's told what an incredible patient I am, how I never complained, stayed still, did great. The second we're alone though, he immediately puts an arm around me and says "what's wrong?" and I tell him that's it, I've hit a wall. I have no more procedures in me. It's a good thing surgery is tomorrow, I say, or I don't know if I could go through with it. The sheer number of procedures I've been through at this point is staggering and I'm just done.

A friend and neighbor with whom I text frequently tells me to head back to the hotel and give myself a half-hour to lose my shit. Cry, tantrum, wail, have an epic pity party, whatever I need - but for only that 30 minutes. I take her advice, and at the end of the time she texts me "ding ding, time's up." Andy and I head down to the manager's reception, have snacks and I get a "baby" white Russian (translation: I can't hold my liquor, so there's very little actual alcohol in my drink). Afterward, we go for a long walk in the area around the hotel. I'm calm and the walk does a world of good. Then we have a lovely dinner and dessert. I take a Xanax (yep, a whole one - those who know such things about me should get a chuckle out of that) and am actually able to sleep.

February 8th: When I get up, I decide that I've got a choice: fear or tiara. If you don't know the deal with tiaras, watch this:

Andy expresses some concern that hospital folks don't care for things that are out of the ordinary, and I tell him that this time, I can't care. I'll comply with everything - I have all along - but damnit, I need something to keep the fear at bay, and this is what's going to do it. So I proudly don my tiara and we head to the hospital.

Unexpectedly (to us, anyway) for 5 a.m, the place is a madhouse. There are dozens and dozens of people there; some of the patients have brought their whole families, many of whom are decked out in various states of pjs, complete with blankets and pillows! I go to the desk and the attendant grins at me. In the chaos she deals with every day, apparently my willingness to show up in a tiara makes her day and she's tickled, which in turn eases my fear a little more. We sit down and I start knitting a chemo hat. Picture it: Andy surfing the Web on his phone, while tiara-clad me knits calmly, in a sea of half-asleep people who don't make eye contact with anyone else. Wait, that sounds a lot like our usual life, now that I mention it!

I'm taken to pre-op to get undressed and into my styling surgical garb. I put the tiara back on over my fashionable haircovering, and am helped into a Bair Paws gown. This thing is amazing - it's got its own heat supply and I can set it to any temperature that makes me comfy without affecting anyone around me! Once I'm settled a nurse brings Andy back. All the staff are thrilled with the tiara, agreeing that facing a surgery like mine, anything that helps with the fear is worth doing. My nurse agrees to let me wear it into the operating room, and while I have to take it off when we get there, she promises to wear it for me (and she does, we have a picture to prove it). I'd gotten some sedation in pre-op and am a bit sleepy but still awake and talking. This is me starting to get stoned:

I'm wheeled into the OR and with help, I get onto the table. I'm pretty far gone by this time; the last thing I remember is weakly mock-arguing with the nurse about the tiara. One of the nurses tells Andy later that at the last minute I got agitated and scared, right before the muscle relaxers hit and I went limp and was out. Fortunately I have no memory of this, but it's not really surprising.

I'm in OR for a marathon 13 hours. It's normally a long surgery but mine is a bit longer as I'm told there were blood supply issues that mean my left breast is now partially pieced together with abdominal skin rather than only being the outer shell of original breast skin, and Dr. Fix had to take a layer of a small area of muscle from the left side of my abdomen. (I learned at my post-op appointment that they are reconstructed from opposite sides - left abdomen/right breast, right abdomen/left breast. I found that interesting.)

An aside: apparently not everyone received texts or didn't feel they received enough updates. Let me tell you how Andy described his day, so nobody feels hurt or slighted. He was in a large waiting room with all the other 5 a.m. family members. There weren't enough seats, and while he had decent wi-fi, he had little or no cell service. In order to make/receive calls or send/receive texts, he had to give up his seat and go downstairs to an atrium area, at which time both phones - he had his phone and mine - would explode and he'd have to answer all those calls and texts. He did this a few times throughout the day, but he couldn't leave often, because any time he did he had to check in and out with the attendant, since the waiting room is where nurses and doctors expect to find family members to give update. My surgery was so long that the waiting room began emptying out, until finally Andy was the only one there, with even the attendant having long gone.

I'm brought to my room until sometime between 11-11:30 that night (and remember, we had to show up at 5 that morning). Andy said that I was so deeply under they gave up trying to wake me, and he was astonished that I snored (I was under anesthesia, shut up) my way through everything the nurses did to me. I have no memory of anything from pre-op til around 3 a.m. at which time a lovely nurse was with me, working on my vitals.

From this point on (and probably before, I was still out) I'm woken every.single.hour. They have to listen to the new blood flow in my breasts with a doppler and make sure it's taking properly. So between that, vitals, meds changes, twice daily unholy-painful Heparin shots and all the other assorted things nurses do to torture patients, I only get what precious little sleep I can snatch between those hours. Fortunately I have little nausea, though the antibiotic I'm on makes my mouth feel as though I've licked metal, so nothing tastes good. I drink my weight (at least it seems that way) in ginger ale, and only eat bland oatmeal for breakfast. Day 2 post op Andy shows up with a giant Starbucks mocha and metal-mouth or no, it's the best thing I've ever tasted in my life.

Mid-morning the first day post-op my catheter is removed. I'm told it may be awhile before I'm able to go to the bathroom, and not to worry because that's normal. They haven't met me: I'm stubborn as hell and I am not letting petty things like peeing get in my way! I've managed to go by the afternoon, although what an ordeal: every time I have to go, I need to call the nurse so she can unplug me. I'm on oxygen to boost the new skin and blood supply, inflatable lower-leg massagers over compression hose to avoid blood clots, and the biggest IV I've ever seen (it's got my antibiotics, fluids, pain pump, and periodic other meds). Every one of those things is plugged into the wall. I hate calling the nurse for anything, but I simply can't so much as get off the bed without help. I shuffle-walk to the bathroom since I can't stand upright yet, the nurses celebrate (as they do every bodily function for the next two days, which is odd as heck and makes me think nurses are amazing people who maybe need to get out a little more), and afterward I decide to sit in the recliner, which is where a surprised Dr. Fix finds me when he comes in on rounds.

Saturday (for those of you keeping track, day 3 post-op) I'm told I can go home if I feel up to the 4-hour ride home. I'm going. I need to sleep, I need to be with my son (one Skype chat the evening before helped him tremendously, but he needs his Mama Llama!), I just want to be HOME. I'm going. After lunch, we head out and everyone is amazed. It's hard work, as I have 5 drains that have to be managed, but I get some decent sleep and by Sunday morning I already feel much better.

Fast-forward to yesterday (I could post a lot more but I know that actual people with eyes read this, and I would like you to avoid long-post blindness and boredom if it's not too late!). We go up to UAB and see Dr. Fix and Dr. Killingsworth. (The second the nurse comes into the room I start to cry. Andy asks me why, and the best I can tell him is that I am still just procedured-out. In my online support group we talk about breast cancer patients having PTSD, and it's really true.) All but my lower drain are removed, and it's so freeing to be able to move around better and not have those things attached to me anymore! We go to a restaurant - my first time since the night before surgery - and I manage to go into Target to find a bra so I can get out of this surgi-bra contraption. The thing is horrible! It's not soft, it's got exposed seams, I don't know who designed it but I hate it. We can't find anything I can wear, so we get back-extenders for the sports bras I currently own. I'm technically a cup or two smaller but there is so much post-op swelling that I temporarily need everything I wear to be looser than I expected.

So you understand: I've had a huge amount of abdominal tissue removed - not technically a tummy tuck, though down the road it will look similar - and both breasts basically hollowed out and reconstructed with the abdominal tissue, with part of the left one having some abdominal skin on the outside. So I'm sort of... pieced together, I guess you could say. The skin on the front of my torso is very tight, and for the first week or so I have to be very careful, as I can't stand upright yet and it makes my back ache fiercely and near-constantly. Now, though, I am doing really well. I'm hard-pressed to believe I'm only 2 weeks post-op; while there is a lot I can't do and won't be able to for awhile (some due to physical limitations, some due to doctor-imposed limitations to facilitate healing), every day I try to celebrate at least one new thing I can do: the day I sit at the kitchen table for a meal, dress myself, put on my own socks, walk outside, make my own cup of coffee, and so on. Celebrating the little things and paying attention to our bodies is something we neglect in our busy day-to-day lives, and since my life currently revolves around healing and resting, I have time to be very slow, and to observe these things that seem so small, yet for me, right now, each is a huge milestone.

Aside from the recovery going so well, the other great news is pathology: I am cancer-free! There was no lymph involvement, no spread at all. The tumors were still contained and no cells had broken out, meaning I don't have to have chemo! While I know a lot of people considered my treatment choice unnecessarily aggressive, reading my pathology report validates that I made the right choice. Not only do I not have to undergo radiation or chemo, but it's likely that had the cancer not been found when it was (or had I chosen lumpectomy instead), at some point in the not-too-distant future I would have had both, in addition to still needing the surgery I've had. This would have been after I'd had lumpectomy already. So basically, I cut it off at the pass and now I can recover and begin to piece my life together post-cancer.

Thank you, so very much, for reading this far. It means the world to me to know that others find my words meaningful.

Monday, February 6, 2012

Here goes nothing...

I've been waiting 3 1/2 months for this: the plan is in place, and first thing in the morning we leave for Birmingham. Tomorrow is surgical markings at noon, and Nuclear Medicine at 1 to have dye injected for the sentinel node biopsy (to ensure the cancer has not spread to my lymph nodes). I check in at the hospital at 5 a.m. Wednesday morning.

I made the right choice. I know this in my heart, yet I am flat-out terrified. Not a lot else to say about it, but I wanted to put that out there.

Sunday, January 29, 2012

Cancer can suck it

Last night the floodgates opened. I cried torrents. I sobbed til it was hard to breathe. I huddled as tightly as I could against Andy, saying over and over "I'm scared. I'm just so scared." He asked whether I was rethinking the surgery, whether I'd changed my mind. I told him I didn't know. I said that it didn't matter what I chose, all my options sucked. I read recently that there are no shitty choices, just shitty options. Because at the heart of it all, as the bracelet I wear says, "CANCER CAN SUCK IT."

I couldn't sleep, so I got up and went out into the kitchen to think. In the dark, wee hours of the night, I realized that it wasn't about whether my choice of treatment was in question, but about grief. I'd been told that at some point I'd grieve the loss of my breasts, but it hadn't happened yet, so I had set it aside, thinking that if it did happen, it would be after surgery and I would deal with it then. I chose to have immediate reconstruction, knowing I could never look in the mirror if I didn't, I really thought that I'd be ok. My breasts are already scarred from my reduction over 20 years ago, so that wouldn't be too different.

But last night, Andy's arm brushed against the side of my breast and suddenly I heard a thunderclap inside my head as the realization hit me that I will probably never feel that again once I have surgery. I'll never have normal reactions to cold, to arousal. Despite knowing I'm nearing 45 and am perimenopausal, the knowledge that even if we were to somehow have another child, I will never nurse another baby, shrieks in my heart.

I try to think about how lucky I am. My cancer was caught early. Because of the treatment path I've chosen, I won't need radiation or Tamoxifen. As long as nothing microinvasive is found on my final pathology, I most likely won't need chemo, either. I'll recover from surgery, and be largely done. I don't let my mind wander to the things that cancer is taking from me, but rather I spend my days thinking about what cancer has to teach me. I try to present a positive face to the world, to draw on the well of inner strength I've discovered this past shitty year. People are always telling me to think positive, to be strong, and I do, and I am. But I think maybe that's done me a disservice.

I chose last week to start my time off work early. I hate my job, and continuing to work and to go about my life as normally as possible kept me choked off from my deepest, darkest fears. I wasn't truly processing what's happening to me, what I'm about to go through, how it's already affecting me. I paid it great lip service, letting those around me think that I was some kind of superwoman, figuring it would help me not give into the depression. But once I decided to stop working, to spend the time til I leave for the hospital actually taking care of my emotional health for a change, all that changed. Cancer's lessons began in earnest, and not all of them are positive. Don't get me wrong, some are amazing: there is the realization that I do not want to remain stuck at this job I hate, that I deserve to find something that allows me to fulfill my financial obligations in a way that gives me satisfaction. The continuing discovery of my seemingly neverending well of inner strength. The blossoming of my creativity. The joy that opening up to my friends, learning to trust people with my feelings, brings. The understanding that pain is pain, it's not a relative thing. That hating my job and wanting to find another way to earn money doesn't make me a horrible human being because there are people who would do anything to have a job at all. That yes, I can be angry and frustrated with people who tell me they're jealous that I get a tummy tuck out of this whole thing.

The price that cancer extracts is so high. I've spent so much of the past 4 months terrified, anxious, depressed. Finally having all the information on what I'm facing, then choosing a treatment path and having a surgery date, helped immensely. But still... in just over a week I'm going to have the biggest, riskiest operation of my life, trusting that the people taking care of me when I'm under anesthesia do their jobs to the best of their ability, honor their oaths, and that my body cooperates. I don't want this surgery. I don't care what my body may look like later, how much better my clothes may fit. I don't care what the lessons I learn do for me, because right now, they are doing things TO me. Tomorrow I hope I can pull myself back up and face the world again, but at this moment, I am in the tight grip of terror, of nebulous fear, of paralyzing grief. I want the world as it was in the seconds before I heard the life-changing words "you have cancer." I want a magic wand that's not broken, a fairy godmother who will come and take it all back.

I just want to not have cancer. This is the single worst, most terrifying thing I have ever faced, and while I understand how the world sees me facing it, that is not my truth, or at least it isn't all the time. Right now my big-girl panties are in the wash, and I feel small, vulnerable, and more afraid than I have ever been.

Tuesday, January 24, 2012

A postponement, and a bit of grace

Last week (January 17th) I woke at 2 a.m. feeling like I'd swallowed razor blades. A cough, postnasal drip, and a slight fever followed. By the time we made it to UAB for my day of pre-op appointments I was well and truly sick. I was so pissed - I'd been washing my hands til they hurt, not touching my face, wiping down everything with sanitizer, and still I caught the crud! As soon as Dee (my plastic surgeon's PA) came in, she asked if I was aware that it was imperative I be 100% healthy for 7 consecutive days, and as it was then day 8, I wasn't going to make it. Surgery had to be postponed. At first I was really upset, and I cried a little right there in the exam room. The next few days, however, I was too sick to care; I slept and nebulized (I'm asthmatic, another reason the delay was so important). A course of antibiotics and a lot of rest meant I got better fairly quickly; it's been a week and I'm down to just a bit of residual congestion.

I've come to realize that maybe this was a wake-up call: I wasn't ready. While the overall journey has taken what seems like forever (four months since diagnosis), when I got the call with my original surgery date, I had less than two weeks. And despite knowing that the treatment I've chosen is right for me, it felt rushed. There are things I want to do before the long recovery: clean the house top to bottom, weed the garden, make sure the finances are caught up, gather simple knitting projects, even load my tablet with books on the Kindle app. But most of all, I needed to feel mentally and emotionally prepared, and I just wasn't.

The other night Andy told me something very simple, just something he'd been reading. In doing so, he inadvertently opened an emotional can of worms for me. Things I'd put on a shelf, shoved to the back and locked away were suddenly right there in my face. He felt badly for hurting my feelings, but in truth, what he did was push me to confront the very things that were keeping me from being able to feel truly prepared (or as prepared as one can be for this sort of thing) for my upcoming surgery. As much as it's hurt and sucked, this is work I need to do, another in the long list of "what can cancer teach me?" Much of it is too private to put out on the Internet, but I will say that we all have our personal demons, and ignoring them doesn't make them go away. Putting on a pretty public face doesn't change a thing; in fact, what it actually does is cause others to think that you're doing great when in private, it's a different story. This is how it's been for me. I'm having to learn to really pay attention to my public face; apparently I'm a damn good actress without even trying, and nobody knew how I was really feeling, how terrified I am. I don't ask for help, I don't offer up my inner thoughts and feelings. Now, with cancer, I have to, or nobody knows how much support and help I really need.

Andy told me that he watches me and doesn't understand how I function, how I get up every day and keep going. Someone on one of the forums I'm on said "I know your days are good and bad, you freak and you don’t. But your strength is amazing to me. Don’t deny it - you could be a sniveling ball of mess at this point and the fact that you keep breathing, to me, means that you've got a ton of grace in all of this." I read it to Andy, and he agreed. This my answer:
"When you ask 'how do I function,' my first thought is to respond 'I don’t,' but the truth is that I do. I am sometimes a sniveling ball of mess, believe me, but I don’t let that be all I am, because I have to be a wife/mother/sister/aunt/friend/employee/etc and the world, rudely, just keeps turning and having expectations. Laundry still needs to be washed, groceries bought, appointments kept, bills paid. But it leaks out if you pay attention. I mess up simple knitting. I blow up over seemingly small things. I wander off in the middle of IM conversations. I don’t understand when someone speaks to me. I try to convey something and I can’t find the words. I miss a bill payment. I misspell things a lot. I cry - often. I hiccup when I hold back tears. I don't sleep well and when I do, I often have bad dreams. I need to be held a lot, and it’s not practical all the time. I get very afraid that I'll be judged by those who either don't know, or who know but haven't been there so have no frame of reference (nor would I wish it on them)."

Surgery has been rescheduled for February 8th. We leave for UAB the 7th, as I'm having a sentinel node biopsy (this makes sure the cancer hasn't spread to my lymph nodes, which we don't think it has)  and need to visit Nuclear Medicine to have dye injected the day before surgery. The surgery itself is very, very long - up to 12 hours. I have no idea how being under anesthesia for that long will affect me, mentally or physically. I'm trying to stay positive, to plan to be as active as I can as soon as I can after surgery, but the truth is that the unknown scares everyone, and this is pretty damn unknown.

A lot of folks have asked what they can do. I was told that while Andy and I are generally pretty independent and don't ask for help, we are to suck it up, because helping us lets others feel less helpless in the face of something as scary as cancer. The things I know we'll need are meals (something we can freeze, with instructions and your name attached), light housekeeping once my mom goes home (she'll be here for a week after I get out of the hospital), distractions, especially during the day when I'm home by myself (there is only so much TV I can watch), I imagine Quinn would love folks to come hang with him, or pick him up and take him out occasionally. Andy will need private time, which is hard the way our house is structured. I'm sure there are things I'm not coming up with, so suggestions and offers are sincerely appreciated! This is overwhelming to me, and while we are blessed to be so well-loved, it's also very hard to accept the outpouring of help when we're accustomed to being the ones doing the helping, not needing the help!

Friday, January 13, 2012

A link and a date

My surgery is scheduled for Wednesday, January 25th. We'll go up the day before, as I have a 1:00 appointment in Nuclear Medicine to have dye injected for the sentinel node biopsy.

I'll post more soon about my thoughts and feelings regarding the upcoming surgery. In the meantime, I wanted to give a shout-out to the lovely Veronica Seimet, Owner/CEO of Boobie Wednesday. She and I have been emailing about our diagnoses and choices; her Stage 0 cancer was only on one side, and she chose the lumpectomy/radiation/Tamoxifen route. She has some incredible pictures posted on her blog that chronicle her biopsy, lumpectomy, and radiation through 5 weeks post-radiation treatment. They aren't necessarily for the faint of heart, as Veronica's radiation burns are rather spectacular. However, with stupid-special snowflake skin, this is something that played heavily into my own decision to avoid radiation entirely.

Veronica's before-and-after pictures are here, for those who are interested.

Sunday, January 8, 2012

A bit of peace at last

My plastic surgeon wisely told me that there would come a point at which I would know. The right decision for me would make itself known, he said. I had no idea how this would happen, but it did. It started when I was writing the final two paragraphs of the previous post, and solidified at Friday's knit night. I pulled up the previous blog entry on my phone and it was passed around, saving me from having to repeat myself or make a loud proclamation in public. I was asked insightful questions, offered loving advice and thoughts. I've always known I had a fabulous support system, but that night I felt it to my marrow. After all the stress and exhaustion, I got to laugh, to be loved, to be a friend, and it was wondrous. I came home and I realized that I'd actually felt happy all evening, something that hasn't happened in far too long. I woke up the next morning and realized that I felt peaceful - I was near tears  from sheer relief. The endless tests are at last over, the not knowing, the out-of-control nature of cancer, has given way to A Plan. The only thing left is to call the scheduling folks, have the actual surgery, then come home and recover. Of course it won't be easy, and I'm sure there will be more fear involved at some point - after all, I still have cancer, and this is pretty major surgery - but I finally believe I can do it. I finally believe in my own strength again, in my ability to cope with this nightmare. I'll emerge with a new, cancer-free body, and knowledge that I BEAT CANCER, BITCHES!

Friday, January 6, 2012

Information Overload

Yesterday we went back to Birmingham - we were up about 5, took our time with breakfast and left the house around 7. We had lunch, then went to meet with Dr. Krontiras, the Surgical Oncologist at UAB's Kirkland Clinic.

We went in expecting to hear her - not really push, but maybe gently nudge - in the direction of a bilateral mastectomy (referred to as Mx after this), since that's what we heard when we were there two weeks ago. That's not what happened, however. She laid out two options that she said were nearly equal in terms of survival: lumpectomy/radiation/Tamoxifen is 92% survival rate, and mastectomy with or without reconstruction is 96%. However, survival rate is not what I wanted to hear; I wanted to know about recurrence rates. I didn't realize that she was discussing survival rather than recurrence, or I would have clarified. So I was really discouraged, because recurrence is a large part of what I'm using to make my decision. At that moment I told Andy that I felt like curling up in a ball in a corner somewhere and rocking - I wish I could just learn to expect that nothing in this journey goes like we expect; there is always going to be someone throwing a curveball at us.

I'll try to consolidate what we learned over the course of the (very long) day.

My options:

Lumpectomy alone has a roughly 30% recurrence rate within 5-10 years of DCIS itself, and the possibility of the recurrence being invasive. Radiation drops this to 15%, Tamoxifen decreases it further.

I learned that radiation does not only have the immediate skin burn issues that I thought; it can also affect the heart and lungs (and I am asthmatic, upping the lung risk issue), and there are other changes that can take years to appear, such as hardening of the radiated area, drawing in of the skin, and pain.

Known side effects of Tamoxifen (source: blood clots, strokes, uterine cancer, and cataracts. Other side effects of tamoxifen are similar to the symptoms of menopause. The most common side effects are hot flashes and vaginal discharge. Some women experience irregular menstrual periods, headaches, fatigue, nausea and/or vomiting, vaginal dryness or itching, irritation of the skin around the vagina, and skin rash. As with menopause, not all women who take tamoxifen have these symptoms.

In addition, the doctors on my oncology team are concerned because they believe my prior health issues point to an endocrine disorder, and are unsure how I will tolerate the Tamoxifen, especially as I am sensitive to many medications. If I try it and cannot take it, they will strongly advise against resuming my current progesterone and pregnenolone, which are working so well to keep my pain in check.

Should I choose this route, there will be monitoring at UAB every 3-6 months to check for recurrence. I know that the anxiety of monitoring will be hard to deal with (she understates, eyeing her bottles of Xanax and Lexapro wryly). If there is a recurrence, I will have to go with a mastectomy, and reconstruction will likely be difficult due to the skin damage caused by radiation - I will probably not be a candidate for the skin-sparing mastectomy at that point. There is also the possibility for further excision/lumpectomy if pathology shows that there were not clear margins at the time of surgery.

In my opinion, the basic pro to this route is the shorter surgery and recovery time, and the lack of psychological issues that tend to arise as a result of mastectomy.

Bilateral Mastectomy with reconstruction (yes, no reconstruction is an option, but not one I'm interested in)

I am a candidate for skin-sparing mastectomy, in which the outer shell of the breast, minus the nipple and areola, are left intact. The reconstruction option I would have, provided that my blood vessels are adequate, is the DIEP, (deep inferior epigastric perforator). In a nutshell, I get a tummy tuck and the skin, fat and blood vessels are used in the pocket left by the mastectomy. It's microsurgery, meaning it's very long and very involved, but has the best recovery time and there are no implants used.

The cons are largely obvious here: long involved surgery, possible complications, much longer healing time. I told the plastic surgeon that while I know it shouldn't be a consideration, I've wanted a tummy tuck since I realized that the skin from pregnancy was never going away. He said that no, it shouldn't be a consideration, but it's definitely a perk, and after all I've been through, I deserve a perk!

The pros are longer: no radiation, no Tamoxifen, no need for a change in the medication regimen that I know works. But biggest of all is that it drops the recurrence risk dramatically. There is no such thing as 100% risk-free even with a radical mastectomy, but this would be close enough for comfort. If I did have a recurrence, I would not look back at this moment and think "I didn't do everything I could have." Both the surgical oncologist and the plastic surgeon said that is not an insignificant thought process - many, many women go for the bilateral Mx for exactly that reason. This is an amazing forum thread that discusses my exact dilemma.

I realize that it may seem drastic to some who only see DCIS as "Stage 0" cancer. However, as you can see above there is so much more to breast cancer - it's incredibly complex and difficult to get a true handle on. As someone in the above-linked forum said, "Every recurrence of dcis can potentially be invasive. Then the whole process starts from square one." This, for me, is the deal-breaker: I cannot go through this again. The whole journey - from the day my surgeon looked me in the eye and told me I had cancer, to now - has changed me profoundly, in ways I'm still processing, and I know that the changes will continue for a long time. I was diagnosed with cancer two and a half months ago, and I still start in shock many times a day as I remember "Oh, my god. I have cancer." Cancer. The "c-word." The worst word I have ever heard directed at me.

There's a Facebook "slactivism" post that says something like "Stupid cancer. We all want a new car, a new phone. A person who has cancer only wants one thing... to survive. Put this on your wall in honor of someone who died of cancer, survived, or who is fighting against it now!"

I want more than to survive. I want to thrive, I want to see my beautiful son grow up. I want to grow old(er) with Andy, I want to love and laugh with my friends. And I want to make as sure as I can that no doctor ever looks me in the eye again and says "you have cancer."

Wednesday, January 4, 2012

Tomorrow is Make a Plan Day

As of today, all the info is in. I've had an MRI-guided core biopsy (that was done Dec. 29th) and it shows that the new area they found is nearly identical to the first. For you geeks like me who like to know such things: I have bilateral, grade 2 DCIS; estrogen and progesterone positive, solid and cribriform, with central necrosis. In layman's terms, it's not invasive at this point, but has some aggressive features. Tomorrow we head to UAB at the ass-crack of dawn to meet with my breast and plastic surgeons, ask questions and make plans.

I'm not screwing around here, you guys: I am completely and utterly off-my-nut terrified. The wait has been awful and I've said so many times that all I wanted was a plan already, but now that we're here I can't stop shaking. This is real: I have cancer. I have breast cancer, both breasts, no shit, really cancer. Some people are focused on it being "stage 0" (though that could change once the surgeons are in there). However, breast cancer is a freakishly complicated beast, and there are other factors, like the necrosis. We'll be asking the docs a ton of questions, but we (meaning Andy and I) are leaning toward nipple-sparing bilateral mastectomy with immediate DIEP reconstruction. If I can avoid radiation, and it drops my recurrence risk by the roughly 90% I believe it will, then I have to do this. I know myself; I'm a ruminant (though not of the bovine persuasion, thanks), and if I don't do everything I can and it should ever recur, I will eat myself alive with recriminations.

So, tomorrow we know. I guess there's already no turning back, but this appointment makes it SO DAMN REAL and I have no words for the fear.