Double Mastectomy: Week 1 Recovery

What does the first week of recovery after a bilateral mastectomy with tissue expander reconstruction look like?  I'd like to think it looks like this:

But the truth is, it looks more like this -- sleeping or laying as still as possible, switching between a propped up pillow on the bed or a borrowed recliner (which has been a lifesaver), trying to stay comfortable, with all my necessities in a small circle around me, within my t-rex arms reach:  

Ben has found joy in taking pictures of me sleeping, and it seems I strongly resemble an old man while I sleep.  I guess I can laugh about it...but I sure am feeling frumpy and uncomfortable. 

You would think I'd have gotten bored doing nothing this week, but to be honest, I've absolutely needed to do nothing, have nothing expected of me, and not try to think about anything remotely complicated.  Most of my energy is going into remembering when to take which medicine, focusing on not scratching where the tape is irritating my skin, and trying not to yank my surgical drains out by accident.

It's all tolerable, and only mildly painful, but recovery is definitely uncomfortable and all-consuming, at least so far.  There's just no real relief from any of it. 

I'm having to be selective about what I share here about this part of the process. I want to be open and descriptive about the realities of all of this, especially for anyone looking for a first-hand experience of something they'll have to go through themselves.  But at the same time, my family and friends are reading this too, so I'm not really comfortable just baring everything.  So, I'll do the best I can to describe what's going on and share a few PG-rated photos as I'm able.

Not the accessories I was hoping for...

They sent me home from the hospital in this lovely get-up -- a compression surgical vest with two surgical drains, one on each side.

The vest is stiff and itchy and squeezes everything, which is already being squeezed and pulled together by clear tape across my entire chest, covering my incisions.  Although it's yellow and bruised all across my chest, I don't have any pain from the long incisions on the sides of my breasts.  Most of that area is numb from all the nerves being severed when all the breast tissue was removed.  Although, I do have some random spots on both breasts where I still have feeling and sensation, where it is definitely tender.  My understanding is that is normal, and may or may not ever improve.  So, the fact that I have a few spots of working nerve endings was better than the complete numbness I was expecting. 

But I can definitely feel pain where the lower band of the surgical vest presses into the open wounds where my drain tubes are sutured into my skin, and that has been the most painful part of this so far.  

As far as pain relief, I took the narcotic pain pills they gave me for several days on a regular basis after I got home, which I'm sure helped me stay asleep and still.  But by Friday (4 days post surgery), I decided to switch to alternating between tylenol and advil because the constipation that those narcotics causes was WAY worse than the pain!  Once I got that under control, I was able to add a pain pill and muscle relaxer a day into the rotation, which I typically want late in the evening when I just haven't had any relief from the pain all day and need to fall asleep.

It was my understanding that I am supposed to wear this surgical vest until my 2-week follow up doctor's appointment.  This morning, after a week of wearing it day and night, I called to be sure that was the instruction, and thank goodness, they said I don't have to wear it, because the tape is holding everything in place.  That ought to bring me a lot of pain relief over the next week, and I wish I had listened better in the hospital to the instructions so I could have taken it off earlier!  But, in my drug induced state, I remember my breast surgeon telling me to wear it all of the time, and the plastic surgeon telling me to wear whatever felt comfortable, so I had erred on the stricter side, to be sure.

Bruised & Battered

After a couple of days, my body started showing evidence of being bruised and battered from the surgery.  This purple bruise under my arm is the nastiest looking one, and I think it might have been caused by the surgical bra rubbing and pressing against it in the hospital.   Of course, I guess it's possible in surgery they had me harnessed up from that spot, to get access to all they were removing.  In any case, it looks worse than it feels, thankfully.  But it's definitely tender.

I also have a big section of bruising on my left side. I'm not really sure what part of the procedure would have caused that.  It's slightly tender, but also looks worse than it feels. 

What hurts the most are those tiny little drain tube incisions.

Drains, Drains, Go Away

So let's talk about the drains.  The sutures are itchy and bruised and painful, especially with a compression bra pressing on them 24/7.  Taking off that compression bra should help with that.  But carrying around two lumpy drains isn't a picnic either.  They have clips that can hook onto the insides of a shirt, and my friends bought me a mastectomy robe that has pockets on the inside of it to hold the drains away from my skin, which works pretty well.  I have to hook them both to a lanyard around my neck to take a shower so that they don't hang down and pull on the sutures.  But, outside of the shower, I've found that wearing  a waist apron with pockets or a fanny pack has been the best way to keep them lower by my hips and out of the way.  Otherwise they create extremely awkward lumps inside my shirt.  Also, there's nothing weirder than wearing a fanny pack to bed.

Two or three times a day, I have to strip the drains (squeeze fluid out of the tubes) and empty them into measuring cups to record how much fluid is coming out of each drain.  Over time, the amount will decrease and the color of the fluid may change colors.  While that initially sounded like a very scary and gross process, it's really not a big deal, and the amount of fluid has been slowly decreasing each day.  My hope is that by my 2 week appointment, both drains will have slowed down enough that I'll be able to have them both removed at my appointment.  And when I think about all that fluid collecting inside my body, I'm very thankful to have an easy way to get it out of my body!

New Foobs, Who Dis?

So, about my reconstructed breasts -- they actually look relatively normal right now (thanks to a nipple and skin sparing surgery option), but they feel very weird.  They are filled with air, so they feel like overly inflated rubber balls, not squishy at all. I believe when I go to see the plastic surgeon, they will remove the air and refill them with saline, which I imagine will be a little softer and probably heavier.  Even without a compression bra on, it feels like I'm wearing a very tight bra that I can't take off.  Maybe some of that is the tape, but I've heard that feeling of tightness and pressure on your chest doesn't really go away. 

Because they look "acceptable", I'm not dealing with much emotional trauma of them being removed, and I'm thankful for that.  But, I haven't really seen the incision scars yet, and still have a long way to go before they are "done" (maybe by my birthday in April?).

Moving (or more accurately NOT moving) On...

One of the hardest things for me, is being still and not moving my body.  I'm not supposed to reach my elbows above my head at all.  I am not supposed to carry, push or pull anything more than 10lbs.  It helps that I'm tall, so that I can stand on my tip-toes and use t-rex arms to reach for things like a plate in the kitchen cabinet or the microwave door, but I've had to be creative or ask for help in many other situations.  

Getting dressed is a slow and tedious process, and trying to figure out what will be comfortable, whether I can get it on and off without raising my arms up too high, and then seeing how my lovely apron/fanny pack situation works with everything takes a good amount of my time each day.  And let's just say, I'm not going to win any fashion awards this week.  I've mostly looked like a clown.  Leggings with an oversized stretchy t-shirt and a zip-up hoodie seem to work best.  

Such limited movement is a big change for me, and it's made the rest of my body feel pretty stiff and sore too.  I'm used to running and twisting and jumping and reaching and moving my body in all kinds of crazy ways, so a week of immobility is definitely taking it's toll. 

I'm doing my arm and shoulder physical therapy exercises, walking around the house and up and down stairs, but that's pretty much it.  I'll be so thankful when I can really stretch and warm up my muscles and joints again.

Pathology Report

Briefly, because I don't have any specific details yet, my surgeon's secretary called me this week with a very general pathology report info.  She wrote "benign" on the right side (non-cancerous side) and "Great!" on the report as a whole. 

I have an appointment to see her on November 18th, where I expect to get more detailed information, but ultimately, we all assume that "Great!" means everything looked good, she got clear margins after removing all the breast tissue, and there isn't any additional cancer to treat at this point because all of it was removed or already killed by chemo.   It sounds like my treatment has been successful!


So, that's what week 1 of recovery looks like for me.  I'm trying to stay patient, stay still, and stay positive and am watching a lot of stupid television and catching up on my blogging while I am chair-bound.  I expect the next week to be more of the same until I can get these drains removed.

And in the meantime, my whole family is enjoying the food that our friends from church have been bringing all week!  It's been such a relief for Ben to not have to think about meals in addition to all the other things he's had to take over with me out of commission.  So we are extremely thankful for that!

2 comments so far:

Cassie said:

Hello! Not sure if or when you will see this. I stumbled across your page while doing research on breast cancer. I was recently diagnosed on 11/21. Everything is in the beginning stages for me right now. Treatment starts in a few days. It seems mine is the same as what yours was. 4 rounds of AC and then 12 weeks of taxol. I was wondering, what types of nausea meds were prescribed for you? My oncologist prescribed 4 different ones. Really just hoping to be able to "function", and yes I use that term quite loosely. I have a part time job that I absolutely love and I hope I can work a little here and there. But only time will tell how this will go...

Anonymous said:

Thank you for sharing!

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