January 9, 2015: Warning – We’re Under Reconstruction

I don’t think I’ve ever dedicated a post to the reconstruction process before. I’ve discovered several women are starting to follow this page because they are walking a similar path or are having to decide which fork in the breast cancer journey to take, so this is really for those women.

Losing your breasts is a really tough experience. It deforms you physically for life even with reconstruction. I don’t know if other women really understand that. The emotionally toll is even a bigger struggle. Somewhere along the way, we’ve been taught our boobs make us women, attractive women at that. Chop them off, scar them, deform them, and that hurts. That’s the raw, hard truth.

Then you start to heal. God allows you to look past it all. Hopefully, you have an amazing man in your life like I do that makes you feel more beautiful than you felt before you went through this awful process. If you don’t, I hope you have a best friend, sister, mom, or somebody to also help get you through this part. It’s not easy, but it’s possible.

Things to expect:

Right after surgery, the only view you will have of the new reconstruction process is of a tight, thick, ace-like bandage around your chest. My surgeon made it clear I was not to remove it. I didn’t.

I lost all but 2mm of breast tissue on both breasts to cancer. I didn’t lose any skin. If you have more breast tissue or lost skin to cancer, your version may be a bit different than mine.

I stayed pretty drugged up on pain pills for a good 10-14 days. I’d love to tell you for sure, but those days are faint memories or long gone. I say this to say I might mix some days up during this time period.

Because of reconstruction, my plastic surgeon required a catheter. I don’t know if this is common practice or not because I’ve talked to other women who didn’t have this done, but know it might be something your surgeon requires. At first I thought this was going to be awful, but it really turned out to be a blessing for me. Mind you I have Addison’s Disease, so I wasn’t allowed out of bed to walk until after the catheter was out. Others have to go on their first walk with theirs in. I think that would be AWFUL!

I went back to see my plastic surgeon a few days after being released from the hospital. I was heavily drugged. I think he removed my bandage to check my incisions for infection. I didn’t see my chest at this time. He rewrapped me in the ace-like bandage and sent me on my merry way.

About ten days post-up, I had my first fill. My doctor removed the bandages, gauze, and band aids, found my ports with this magnet, and marked them with a black marker. He then used a needle (a really big needle, so I’ve been told. I don’t look!) and inserted it into the port which is right above where my nipples used to be. It hurt. It stung. Even on pain meds! He filled one ounce of saline in each side which is equivalent to a quarter of a cup size. Remember before this fill, I was breast bone, expander, 2mm of breast tissue, and skin which equals flat as a young, skinny girl.

The actual fill takes only a few minutes by the way.

He replaced the bandage with a training-like bra you’d give your ten to twelve year old that fastens in the front. Now, I’m going to complain a little here. My skin was super sensitive, it was completely numb, and everything that touched or rubbed against it annoyed me to no end. This bra was lacy and had a tag. Ugh! I hated it from the moment they put it on me. I would replace this bra with a bandeau bra within a few days. My doctor approved this change.

After getting home, I chose to look. A lot of women don’t. I decided I could handle it. How bad could it really be? I cried big, alligator tears. It was more painful than I’d prepared myself for, and I didn’t even value my breasts like some other women do. I’ve always been very small busted, so this has never been one of my best physical assets anyway. It should have been easier, and maybe it was, but it was still a very emotional moment. (Not as painful as losing my hair though. I’ve cried a lot more over my hair than I have over my boobs. I guess that shows which one I thought was more valuable of an asset, huh?)

What I saw before me was the chest of a deformed child. The scars are a good two and a half inches across what was once the middle of each breast. The nipples and areoles are gone. Sterile strips still covered the incisions. The skin was all drawn together in lumps like scar tissue at the bottom of each breast. My chest was swollen and bruised still from surgery and everything hurt. Two purple and red holes are at the bottom side of each breast where the drains had been removed. My pectoral muscles were tight and hurt. My chest felt like if just completed a hundred push-ups. Two tiny lumps were supposed to represent my new breasts. This was far from glamourous. This is why so many women just don’t look.

Oh, and unless you’re already a back sleeper before surgery, sleeping is going to be uncomfortable for a long time. Yes, you still want to have reconstruction surgery. I promise. As horrible as this sounds, it’s temporary. Having that flat, deformed, child-like chest would be forever without this process. Maybe you could adjust and handle it, my husband and I decided that wasn’t what was best for us.

A lot of women joked around with me about getting to be the size I’ve always wanted to be. I joked too. Well, that’s not exactly true. Breast reconstruction is NOT breast argumentation. I’d soon discover that there’s a minimum size my plastic surgeon needs me to be to properly “fill” the space left after my surgery. Everyone’s “blank space” is different. I have no idea what determines this space, but they obviously know. There’s also a maximum size I can be because the skin and muscle will only stretch so far before it becomes too thin to safely contain the implants. Picking the size you’ve always wanted to be isn’t really an option unless your perfect size falls in the range of his minimum and your skin/muscles’ maximum size. I think I’ll be more than satisfied with my end results.

Week three was another fill. My nerves began waking up by now. The sterile strips were removed at this appointment. I felt that needle going in and coming out, and I just thought the first one burnt. This time was worse. The actual fill even hurt. I could feel my skin and/or muscle stretching. Ouch! Then it was over.

By this point in the game, I was suffering from lost nerve syndrome (totally made up name by the way). I’d get cold or would get a chill, and this very painful tingling sensation in the area of the incisions would occur. It was awful! Dr. Rumalla explained it as the nerves in my skin searching for the cut out nerves in my breast tissue. He literally told me I was going to have to train them to stop. I needed to run hot and cold water over the area in the shower and mentally tell my nerves it was okay. I needed to rub a feather or gently wisp my finger over the incisions and then massage the incision as hard as I could tolerate (which isn’t much pressure at all in case you are wondering) and once again mentally tell my nerves it’s okay. This sounds pretty fruity, but it actually works. It does take about two to three weeks though, so don’t expect it to stop overnight. Some women get lucky and never experience this odd sensation.

Obviously, the sexual sensations are gone. If you’re a woman this was important to you and your partner, I’m sorry. This is hard. My surgeon prepared my husband and me really well for this. I don’t know that all surgeons do, or maybe some women are just in denial. Please know it’s gone, and it’s never coming back again.

Some things I wasn’t prepared for was the numbness. It has gotten better, but at three weeks I think my chest could have been on fire, and I wouldn’t have know unless I saw the fire itself. That was really frightening to me. I also wasn’t prepared for the hard, tight feeling of fake boobs. It’s just odd to me.

Another thing we don’t think about during this process is gravity. The liquid goes in the center of the space, but then gravity pulls it down to the bottom of that space. In the beginning, that makes your fake boobs look really weird. They are flat on top, rounded at the side and bottom but kind of squish out the sides. I’m not used to this whole look. My doctor constantly reminds me we are looking at the middle and bottom crease and nothing else. Oh, okay but my eyes and brain don’t seem to comprehend that message. They just see two ugly, deformed, odd ducks staring back at them in the mirror.

These new, fake boobs hurt all the time. Yes, all of the time. The expanders rub up and down against the breast bone. Now, that I have more liquid in my blank space when I move from lying to sitting or standing, I have to patiently wait for my new boobs to resettle. Odd? Yeah just a little, but I’m getting use to it.

Starting with my third fill is when I actually noticed a difference. I actually felt like I had some boobs again even though they were odd. My back had to compensate for the added weight. I had to adjust my shoulders back more. I have real-like cleavage for the first time in my entire life. Well, maybe when I was pregnant, but I don’t think that really counts.

After this third fill, I received a break because my surgeon went on vacation, and I went home for Christmas. I truly recovered and fully adjusted to this fill. That’s not to say some weird things didn’t happen. From week three to week six post-op, I could feel these moving bubbles. Weird. The numbness started to decline. The crazy nerve sensation is all but gone. It shows up once or twice for no apparent reason though, so be aware of that. The expanders stopped moving or so it seems. The fluid stopped moving around so much. My chest quit feeling like I’d just completed the arms, chest, & back workout of P90X.

Now it’s time for fill number four. I was scared to death it was going to hurt so bad because it had been so long. He cleaned me up, marked me, and inserted the needle. I never even knew. It didn’t hurt. It didn’t burn. Wow! He switched sides, and BAM! welcome back to reality! It hurt. It burned. I could fill each molecule being inserted into me. Ouchie!

It didn’t take long to know it’s mostly like the other times. The expanders are back sliding around as I move from one position to another. The liquid doesn’t really squish around, but there’s a lot more pressure. I feel like I might pop. The pain on my left breast bone where my large tumor was that I thought was gone is not. It hurts really bad tonight. My chest is much fuller and tighter. The top is starting to fill out, so the shape doesn’t appear so odd to me anymore. Besides the long scars and lack of nipples and areoles, they almost look like real boobs again. At this point, I’m a good cup size bigger than I was before I had surgery, so my skin is stretched back out plus some.

He said I have two or three more fills before I’m where he needs me to be for my implants. Then he says the artist will overtake the surgeon, and he’ll work his magic. I pretty sure I’m very lucky in this department. This is why I think it’s very important to research your plastic surgeons and talk to them before you decide who’s doing your surgery.

Dr. Rumalla told us during our consultation I would have three surgeries.
The first one right after the double mastectomy to insert the expanders. The second one to replace everything with the implants. I’m pretty sure this is standard procedure for all plastic surgeons doing reconstruction, but Dr. Rumalla includes a third finishing surgery that completes the “art work” as he calls it. According to him when I walk out of his office I will feel more beautiful and more confident than the day I walked in. I’m finding out this isn’t all that common of a practice. Many of the women I’ve spoken to who’ve gone before me were told to seek this last part out on there own. I encourage you to ask questions about this if you haven’t already started the process. Knowing about this third surgery has been good on my psyche. I know I won’t have to stare at these two long, ugly scars for the rest of my life. They will always be there, yes, but I’ve been told I won’t notice them unless I go looking for them once he’s finished.

I hope this helps more than it hurts. It’s a tough decision to have a double mastectomy, but I’m so thankful reconstruction is now an option available to every women going through this. I know women who’ve opted out of reconstruction, and they seem perfectly fine with it. I don’t think I would have been. Reconstruction has been good for me. It’s very much a part of my healing process both physically, mentally, and emotionally. My advice, even knowing all I know, is to go for it.

Add-ons:
You can’t drive until you’ve been off your pain meds for 48 hours.

Working out is limited to the basic arm exercises and walking in the beginning. It’s very slow going. You’ll be released to walk up to a mile at first. About 2-3 weeks later, you can walk up to two miles, ride a stationary bike, use a stairclimber, and an elliptical without the arm part. No bouncing is allowed until all surgeries are completed, and you’ve healed from them. Runners, it’s going to be a while. Cross fitters, it’s not ever going to be what it once was.

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About courage2conquercancer

At the age of 40, I was diagnosed with breast cancer. This is an account of my journey from my discovery and beyond.
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