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.

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.

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.

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!

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.

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!

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/radiation/Tamoxifen

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: Cancer.gov) 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."