New Boobs (graphic picture)

I wanted to post what my breasts look like now, a week after my surgery. I really searched and searched the internet for something that resembles their current state, but I couldn’t find anything. I think people going into this surgery want to know what’s in store, so here, I give you, my frankenboobs:

Frankenboobs

Frankenboobs

I’m sure I’m not the first person to refer to them as frankenboobs. The whole thing is rather Frankensteinish, if you think about it. It is the work of science fiction – I mean, all I need is some sort of chip in there and I could be some kind of robot monster thing.

But I digress. So here’s the deal with the breasts. They don’t look so hot right now, of course. They’re somewhat asymmetrical both in size and the way they hang, but I think that’s gotten much better over the last week, so I have hopes it will continue to improve and can be adjusted in the Phase II surgery I’ll probably have in December. Most of the purplish lines are actually marker from before the surgery (I still have the surgeon’s initials on my chest). The rest is a combination of stitching and glue. Underneath all that is tape that is supposed to stay there until I see the doctor on Thursday; it’s a bit itchy but otherwise not a problem.

It was a bit strange to look down and see these things the day after surgery. I suppose I expected to be wrapped up and bandaged, but no – they have been exposed since the get-go.

They are incredibly strange to touch. Mostly they’re numb, but it’s odd to know that the skin I feel in those middle circles is actually from my stomach. I can feel the peach-fuzz hair there like I had on my tummy (although I think that could just be threads of glue). In the last day, they’ve been seeping a little bit – my mom thinks it could be because I took a shower yesterday morning and loosened some of the guck that was on there. I ignore them entirely in the shower – I was told not to let the water hit them directly and scrubbing isn’t a good idea. I’m just supposed to leave them alone. But a few times I’ve stood up recently and felt a bit of a tearing sensation in my right breast – I can’t tell if it’s guck separating from the surgical bra, or if there is some separation in the actual stitching. Nothing looks wrong, so I’m just sort of ignoring it for now. The pain I have is (very manageable) in my abdominal hip-to-hip incision, which is more worrying just because of it’s sheer size.

I think the breasts still going to be a bit saggy, but much less so than my previous ones. And I suppose on my generally saggy body, that will look much more natural. But I’m thrilled with the size. I can tell already just by how I look in my pajamas that they will be much less of a focal point on my body and won’t completely take over my entire top half. (of course, now I might have to start doing make-up and hair if people might notice more of me than just boobs!).

Viving

When I was diagnosed BRCA2+, I signed up for any study or research project that was relevant to my situation. I knew my fate was pretty much sealed, but I wanted to feel like I could at least possibly help other people (like BRCA, this is a trait I most certainly inherited from my father, who constantly goes above and beyond to do things for others). Through many of these studies, I encountered the term “previvor.” This is the term used for people who are BRCA+ who are surviving the wait to be diagnosed with cancer or the period before choosing undergoing prophylactic treatment.

I always found “previvor” to be offensive, and I said this in multiple studies. To say or act as if I were surviving anything, when there are so many out there who are actually battling cancer, felt to me to denigrate the real survivors. So I never referred to myself as a previvor, and in my own research and reading, I’d avoid forums where women discussed previving.

So now I guess I’m technically a survivor, since I was diagnosed with BC and I lived through it. But this feels wrong to me too. I knew I had cancer for about two weeks before I had surgery and within only days of having surgery, learned that all the pathology was clean and non-invasive. I won’t need any treatment. So really all I did was make it through the surgery, and that had a lot less to do with my struggle or will to live than it did with the talents of the anesthesiologist.

I guess I don’t think women really survive breast cancer. I think they survive the treatment. I mean, I won’t have had chemo or radiation, and those are the bad parts; those are the parts that gnaw at your will to live – that’s what makes you a survivor -doubting whether you can get through it but persevering through sheer will. Having cancer at my stage is nothing – I am not sick and I won’t be; I wont have had my will to live tested. So I think it’s insulting to women who have gone through so much more to call myself a survivor of anything.

This is why it’s also been unnerving to me how many people have complimented me on my strength and how impressively I’ve behaved through such remarkable struggle, on how brave I am. I don’t think I’ve done anything! I was planning to have this surgery anyway. The diagnosis just moved up the timeline. I didn’t really have a choice once the DCIS was found.

I suppose I could have gone a slightly easier route- had a lumpectomy with a round or radiation. But it turned out my breast was full of DCIS – they would have had to remove the whole thing most likely anyway. And then I’d still be living with the death-trap of the remaining breast.

So again, I didn’t do anything brave by choosing this route – I did what was the smart thing to do. I guess because I make my decisions on practicality, they don’t feel so brave. They just feel like the obvious thing to do.

Post-op day Five

So it’s been five days since my surgery. I’m definitely feeling better now that I’m not in the hospital. I’m sort of dreading going to sleep since last night I awoke at 2:30 and never fell back to sleep. But, still, it was better than the hospital.

At 6:30 this morning, I was able to go up the stairs to the main floor of my parents ranch house (I’m staying in the basement guest room, which was my bedroom as a child). I realized I would be unable to reach anything in the kitchen, and so I woke up my parents so they could make me some breakfast. It is wonderful being here – they really just want to do anything they can to make me feel better. While my husband is loving and generous and also wants to help me feel better, I know he’s busy now taking care of our son, and there’s no way he could attend to me the way my parents are. I will probably stay here until Tuesday or so and then gauge whether it’s a good idea to go home.

I did see my son today, finally! Of course, at 20-months old, he was excited to see his toy box and didn’t really pay much attention to me when my husband brought him over. Nonetheless, I got to see him, which I think tremendously helped improve my mood. Although it’s hard to see him and not get down on the ground with him, play with him, pick him up, or have him sit on my lap.

Today a visiting nurse came as well. She cleaned the drains, took vital signs, and just got some basic info. My insurance provides for a small handful of these visits, which are somewhat reassuring. I do have a huge incision and stomach tissue sewn to my chest, so it’s nice to have a professional take a look every now and then. My first follow-up doctors appt isn’t until Thursday.

I really felt my breasts for the first time today. What surprised me most is how warm they are. The doctors commented on this repeatedly – it was something they saw as a good sign. So even though it’s really weird, I’m trying not to pay it too much attention.

I’m definitely still feeling some after-effects of all the drugs I was hooked up to at the hospital. For one, my skin and hair are completely greased over. It’s disgusting. I will shower again tomorrow, but even despite yesterday’s shower, I was completely greasy within hours. I’m also anxious about being on aspirin for the three or four months the surgeon wants me to stay on it. That just seems like a long time to me and there are so many warnings about taking aspirin.

I’m having some pain at the incision site in my stomach, and some where the abdominal drains are, but overall, it’s manageable. Walking is still a challenge and I guess it will continue to be for at least another week or so.

If I Knew Then

No matter how much research you’ve done into mastectomies and reconstructions, and I’ve been doing it for seven years now, there’s a lot you can’t possibly know until you are in the actual situation. My surgery was on Monday; it took almost 14 hours, a complication of my being overweight and large-breasted. The full pathology report came back and it was all negative for invasive cancer – no lymph involvement, no spreading. I won’t need any treatment. While I know anyone reading this is looking for a recap of what went down the last five days, I can’t really repeat it in exact detail because much of it is blurry. But I can tell you some things I wish I’d known before having this done; these are in no particular order. There are no graphic pictures, but some gross detail and a lot of bathroom talk.

1) I wish I’d known that there would be no sleeping in the hospital. The nurses come in every hour on the hour to check the doppler signals of the blood vessels and arteries that have been reconnected in the breasts. That takes about ten minutes and basically involves being poked a bit and then listening to the loud wooshing sounds going on in there; it also involves any screeching feedback sounds that the machine makes. There were also nurse checks for vital signs. Every morning, the residents came to check on things – two from the plastic surgeon and three from the breast surgeon; the plastic surgeon residents come back in the afternoon. Then the PT woman would come to take me for a walk and show me some exercises. There are neck/shoulder exercises I’m expected to do three times a day as well as breathing exercises I had to do in the hospital to recover from the long surgery and tube that pushed air into my lungs. At the end of the second day, they removed the catheter, which meant that any time I had the slightest urge to go to the bathroom, a 15 minute ordeal ensued of getting unhooked, shlepping into the bathroom, collecting handfuls of tubes, and then putting it all together again. Basically, although everyone kept telling me to get lots of rest, they made it nearly impossible for me to do so.

2) I did not know that I would need my thigh muscles so much. As a girl who, I admit, sits on public toilet seats, I don’t get a lot of exercise in my thighs. Even swimming, lately I’d been focussing on upper body and core. But once you have the abdominal surgery, you will be forced to walk in a hunched over position that requires great strength in your thighs and back. Get yourself a thighmaster and start using it well before the surgery. My back in particular is weaker than I thought – after only minutes of waking hunched over, my back gives out, begins to spasm, my abdomen seizes, and the whole process is paralyzed.

3) Bring your own meds, particularly for headaches and nausea if you have meds for these things. I found that everything in the hospital made me nauseous – the smell of the nurses hand soap and perfume, the sound of the doppler machine, the feeling when the residents would squeeze my new breasts (even though I couldn’t really feel anything). And, I had a headache most of the time, which was probably caused my some combination of the pain meds, the blood thinners, the restlessness, and being poked and prodded a hundred times a day. Luckily, I was able to get imitrex which did usually work.

4) Don’t bother packing clothes. I didn’t wear underwear the entire time, and my hospital gown was pulled down more often than it was snapped up. I was basically naked and on display for five days. I don’t know why I packed a week’s worth of socks.

5) Bring a caretaker if you can. I could not have been more lucky that my mom came with me – she stayed in that hospital from the moment I checked in until the minute I was discharged. She now knows more about nursing tissue transfer patients than some of the nurses did! She took care of everything for me during long waits after calling for a nurse. My mom held my surgical drains in front of me while I pooped and while I changed a tampon. She did not blink an eye at any request no matter how gross it was. And it was really gross.

6) I did not realize how much of a fidgeter I am. At this point, I’m basically stuck in one of two positions, laying down with my back elevated, or sitting straight up in a chair. Normally I am one of those people who sits on my legs, who curls myself up on myself, sits cross legged at my desk, who sleeps on my side and switches frequently. It is hard to be in only two positions per day. I actually look forward to trips to the bathroom – it give me a chance to break up the monotony a bit. In fact, this evening I have been up most of the night (after sleeping from about 9pm-2:00am) just getting in and out of bed. Even though getting up is hard, it sometimes feels better than just lying there.

7) This is something I read about in many places, so I did know about it before the surgery, but the drains are completely frustrating and annoying. They’re a huge pain in the ass. Do yourself a favor and buy a belt with pockets that is made for holding surgical drains; this is the one I got and it has worked out well since coming home. You will be glad you did because holding them up while you try to pee when you don’t have any core ability is a challenge. There have been amazing medical advances – these things are an antiquated and tedious process, and I can’t believe no one has figured out a better system.