Thursday, March 3, 2016

one week to two months post-mastectomy

*I'm putting this all out there in the hopes that maybe somebody else who is going through this can find something useful from my experiences. One of my biggest helps during this whole mastectomy/brca experience has been finding other people who have told me something was normal, or that they understand...*

Second Post-Op, Two Week's Later: This appointment will probably go down as one of the weirdest days in my life. Since my implants were only expanded with air, that had to be taken out and replaced with saline. The nurse stuck a big needle at the top of my expander/breast (terrifying to watch, but I didn't feel a thing) and deflated the air. I got to watch my boobs deflate-exactly like a deflating ball. Crazy stuff. She then added 500cc's of saline back in to each one (that's a total of two pounds). I felt a little pressure, but this didn't hurt at all. Sitting up, I felt a little heavy, but that's about it. I also had my last two drains removed! A few hours later, the pain set in. I'm not sure how to describe it, but the first two days after my fill were agonizing. The only thing that helped was laying back. As soon as gravity did it's business-horrible pain. I was also very worried because that Monday (The fill was on Friday) my husband was going back to work, and I had to be able to get the kids to/from school, and keep a three year old alive. Much to my surprise, by the time Monday came around, I was much better. Writing this, on a Thursday, I had yet to take any pain meds (made the switch to Motrin on Sunday so I can drive). That's not to say I don't have any pain-I'm still sore, my muscles in my armpits hurt like crazy, and the skin on my chest feels like I have a horrible sunburn whenever anything touches it (yay for nerve endings regenerating!), but all things considered, I feel pretty good. Tomorrow I go in for another fill-hopefully my last, or second to last-and the pain cycle will start over, but at least now I know there's an end in sight! Another random fun fact-I'm not moving fast, but any time I gain momentum, I can feel and hear the saline sloshing around. My new normal is kind of weird, haha!

And just cause I know people are wondering, I'll add a picture of how things are looking. My expanders-which are usually not the prettiest to look at-actually look pretty good considering that. One thing though-those babies are rock hard, and the come out where my armpits are (something that will hopefully be fixed next surgery). This means that sleeping on my side is impossible, and even though I feel huge, there is no way to fit a bra on, also (not that I'm worried about this at all right now)  there is definitely no cleavage happening-it's just not physically possible to squish them together.

Weeks three-four were a bit of a strange middle. I was feeling a hundred times better compared to before, but I was still in a significant amount of pain. I also had more energy, but I became exhausted very quickly. At the end of week four, I was feeling pretty good, and decided to go to the store for a quick couple of things. Such a mistake!! By the time I was checking my groceries out I was nauseous, sweating, and shaking, and by the time I made it to the car I was crying.This is an email I wrote to a friend after she asked me how I was doing....

I never really know how to answer that, because compared with the first two weeks (which were kind of a nightmare) I'm a million times better, but compared to normal, I'm always in pain & am exhausted, but it's managed now. I actually cried last night because I broke down and took vicodin again, and for the first time in a while I didn't feel any pain. I'm not addicted or anything at all, but I hate how much I need pills (usually just motrin or tylenol). I feel guilty feeling sorry for myself, but sometimes feeling that way makes me grumpy, lol. like I was in a lot of pain driving to the doctor & feeling sorry for myself, but then I sat in a waiting room with people obviously dealing with cancer & felt like a fraud. i guess i'm super grateful, but I don't always want to be. is that awful?

Weeks 5-7- These weeks were actually pretty uneventful. My pain-while still present-is at a point where I hardly ever need medication, and when I do tylenol is enough. My range of motion is off, and eventually I'll need physical therapy but I've decided to hold off on that until all my surgeries are complete. Sleeping has probably been my biggest issue. I've never been a back sleeper so trying to get comfortable has been tough. I'm coming close to week eight, and I've noticed some hormone imbalances (thankfully I was warned about all three of these, but honestly, it's been a little traumatic, lol) right now everything makes me cry, and I've cried myself to sleep without even knowing what I'm crying about. My chest is now covered in acne and peach fuzz type hair, which believe it or not, is not awesome, and has brought about more tears. But-there is a light at the end of this tunnel! I will soon be having my exchange surgery, and these awful expanders will be replaced. I'm not nearly as impressed with them as I was before. The above picture is 1 week post pbm, and the one below is 7.5 weeks post. Now that the swelling is gone they look more wonky. (Also, just a note that because I had nipple sparing, my nips are always "on" now. It hasn't bothered me yet, but I know some women hate it.) I'm also having second doubts about whether or not this is the right size. I've heard that permanent implants have less projection, and once again getting to choose leads me to worry about making the "right" choice.

And just in case you missed it, here's the link to my first week post pbm:

My Mastectomy: First week

*I'm putting this all out there in the hopes that maybe somebody else who is going through this can find something useful from my experiences. One of my biggest helps during this whole mastectomy/brca experience has been finding other people who have told me something was normal, or that they understand...*

Surgery, Day 0: My surgery was scheduled for 1:30, so we were told to show up at the hospital at 10:30.  We showed up, registered, took a pregnancy test, and then waited two hours before being called back. At this point I was feeling surprisingly calm. We had  been dealing with an insurance nightmare, so I was way more stressed out about that. In fact-I was more worried the procedure was going to be cancelled and I would have to go through the stressful waiting again, so I was relieved to be getting it over with! The doctor even told Joel she was surprised I was as composed as I was with everything going on.
My surgery ended up taking about 8 hours, and then I was in the recovery room for an hour, so I made it to my room at 9:30 that night. I had a nipple-sparing mastectomy with expanders, and the doctor filled me with 50 cc's of  saline, and 450 cc's of air. Just a quick lesson- after all my breast tissue was removed, my chest muscle was cut, and then an inflatable implant (aka-expander) sandwiched between the muscles. Later on, the expander will be removed and a permanent silicone one put in it's place. (Most people do not come out of surgery with their expanders so full, but it depends on a lot of circumstances. Mine were all good, so they were very full, which in the long run made things easier, but I think in the short, also made things more painful since the muscle was so stretched.)

My pain at this point was pretty intense, the best way I can describe it is this-a combination of labor contractions (thanks to muscle spasms), engorgement while breastfeeding, and muscle soreness worse than anything I've ever felt. So many people (trying to be encouraging) had told me that the pain "wasn't that bad" so I felt guilty/bad about needing so much pain medication. Then, less than 12 hours later, my surgeon's intern was talking about discharging me, so I felt more like a freak, cause there was no way I could have made it home that first day. Looking back, I should have just taken the good stuff all I could whenever I could! Worrying that the nurse was going to think I was a baby should have been pretty low on my priority list, but for whatever reason it was something that really bothered me.
I  had to share a room the first night which added to the fun. My roommate was up all night with her TV blaring. No joke- someone was called into the room at least every hour, and no one tried to be quiet in the middle of the night. Good times. I'll also add, that I am so grateful me husband stayed with me overnight. I don't know how I would have managed without him there. If you are having this surgery, please do everything in your possibility to have someone stay the night with you!

Day 2: After two nights in the hospital, I was sent home. To add to my whole anxiety of needing medication, that same darn intern sent me home with TWO days worth of pills and told me I'd recover quickly since I was young and healthy. (Two days later when I called for a refill, my surgeon's office was shocked I was sent home with so little...) Anyways, I had my pain medication given to me about a half hour before the drive, so while uncomfortable, it wasn't awful. Finally sleep! I slept a good 15 hours after getting home (with wake ups for pain medication). I was also able to sleep in bed-I just had to be propped up with lots of pillows and wrapped my Born Free pillow around my sides for my arms. Another place to give thanks to my husband-he took care of managing my pills for me. I had 4 medications that had to be taken at different times and doses, and I never would have remembered on my own. The guy even set alarms so he could wake me up to give them to me to keep the pain under control. He's a keeper.

Getting out of bed was definitely the worst part of this all. So much hurt! You don't realize how many muscles you use in your chest until every movement of them brings pain! (Even moving your mouth in a yawn pulls the neck muscles which extend to the chest. Crazy!) The best solution we found was where my husband would put one hand behind my back, and hold my right hand. I'd put my left hand around his neck/grab his shirt & up we'd go. This distributed what parts of my body were involved. Satin pants made this a little easier, but it was still awful any time I had to get up.

Joel also charted my drain output for me, which was great. At this time my right hand was really weak, & I could barely hold a pencil. I had four jp drains placed in my side during the surgery. Not the prettiest solution, but for me I found pinning them to the waistband of my pants to be the best option.They had to stay in until the total output was less than 25cc's per side per day.
Getting home was also the first time I had a really good look at myself, and I was actually really surprised. The surgeon had been able to complete the surgery with incisions under the breasts (which is not what I was expecting). They definitely didn't look like before, but the reality was a lot less scary than my expectations. I am very blessed to have had such great doctors!

Day 5: At this point I was really surprised to find my pain took a turn for the worse. Everybody I'd talked to said days 3-5 were the hardest, so I thought I'd made it past the worst! My muscle spasms were constant, and my pain was awful. Even on the maximum dosage of prescription pain pills, there were times when I would cry because I had to wait another hour before I could take them again. If I could do anything over, I would have made the doctor give me something for the spasms before I left the hospital. They kept saying the Vicodin would help stop them, but it most certainly did not for me. I also should have called the doctor and let him know my pain wasn't under control.

First Post-Op Appointment, One Week After: Doctor took two of my four drains out (one on each side). This was such a relief! The exit site had become painful and very tender, but it was much more manageable with only two. This hurt a lot less than I had expected. Just a little pull, and a weird sucking feeling, and then it was over. He also removed my bandages and added new ones. This is also the day I was prescribed muscle relaxers (Flexeril). Those pills gave me hope again, and did so much more for my pain than Vicodin ever did! I will say that I had built up the expectation that all my drains were coming out this day, so it was really disappointing to have two left in me-every doctor is different-but I wasn't allowed to shower while my drains were in place. Thankfully, two was better than four though.

In case you'd like to read more, here's weeks two through two months post pbm-

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