Monday, April 25, 2016

Tissue Expander Exchange Surgery

It's been a while since I've posted, but I thought I'd give an update. I'm now a month from my reconstructive exchange surgery. Things went really, really fast for me. Because I was expanded so much straight after my prophylactic bilateral mastectomy I only had 10.5 weeks between my mastectomy and my exchange surgery, and only needed once expansion. I was expecting to still be in expanders at this point, so already being finished with my surgeries is a huge blessing!
exchange surgery day!

Compared to a double mastectomy-and with that surgery still being so fresh-the exchange surgery was so much easier! I went into the hospital at 9:30am and was home by 1pm. Of course it's still a pretty big surgery, so there was definitely pain, but instead of three weeks of constant pain pills, I was able to switch off the prescription stuff and over to ibuprofen by day four. I was so awfully uncomfortable with my expanders that I felt a certain relief the same day of my surgery. These permanent implants are so, SO much better! So any ladies out there in expanders, take hope! It gets better! Also, so happy to report that my expander armpit foobs of the picture below are now more centered and normal. I think that was one of my biggest fears-that I would always be unnaturally positioned, so I'm really happy about that. To be honest though, I was really disappointed the first time I took a look at things, but a month later I'm happy. It really does take time for things to "settle." I ended up with 690 cc's, with anatomically (teardrop) shaped silicone implants and they are looking very natural.
no more armpit foobs! 
One of the big surprises of the surgery was that I ended up with jp drains again. These ended up causing me the most pain from the whole thing! By day seven they were pretty unbearable. A little tip- put a few bandaids below the exit site to secure the drains to your side. That helps keep them from being pulled a bit. Also, if you're wearing a bra (24/7 for me after the exchange surgery) putting a cotton ball/gauze/toilet paper between the bra band and the drain exit helps. I once again pinned them to my shirt or pants, but I put baby socks over them to keep my kids from being grossed out. ;)
(I put bandaids over the exit site, over the black stitch holding the drain in place, and then one or two under the area on the drain where the black stitch stops)

last day with drains-hooray!

I have some major rippling when I lay down, and emotionally/visually it's kind of hard to take. Right now I'm at the stage where I need to decide if it's something worth trying to have more procedures to fix, or if I need to learn to be happy. I think it could be very easy to fall down a path of always wanting to have things "tweaked"-and there's nothing wrong with that to an extent-but I also need to remember that I definitely wasn't perfect before, and at some point I have to accept what I have the same way we accept our God given bodies. Not that that was an easy thing to do before! I still have no regrets that I went down this path. The peace that comes from knowing I've done all I can to protect myself from breast cancer is huge. Knowing that all the screening and worries from the past, is in the past, is such a burden lifted!

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-

Thursday, January 14, 2016

Mastectomy Hospital Bag

These kinds of posts have helped me feel as prepared as possible, so I thought I'd make my own to help anyone who may be where I've been. Since this is being posted after I got home, I can tell you what I actually used!

my cute Target weekender bag I never get to use.
a little bag of face cream, lotion, toothbrush, toothpaste, body spray, face wipes, lanyard. I used everything besides the spray & lanyard, but both of those have come in handy at home! I almost never use chapstick, but I've needed a lot of it post surgery.
laptop, kindle, and old letters to read through. I was way too miserable to read, but was glad to have my computer and phone (also chargers of course!).
My throat was really sore thanks to the breathing tube used during surgery, so the drops and mints were nice for that. I brought chocolate for myself and the hubby, but wasn't personally interested in mine.
Going home outfit-button up pajama top, bottoms, and slippers. I pinned the drains to the waist band of my pants.
Satin Robe-wasn't able to use this as I had an IV in my hand the entire stay.
Mastectomy Pillows that I made from this pattern. I actually forgot I brought these, but they probably would have been nice to use.

Tuesday, January 5, 2016

Preparing for Mastectomy

I've been spending the past two weeks preparing the home for my upcoming surgery. I'm hoping for the best, but preparing for the worst. I've found lots of information online for things that are useful to have, and here's what I've gathered. Later on I'll try to edit it with things I didn't need or wish I had.

Mastectomy pillows. You can buy these several places (etsy, amazon...) but I went here for a pattern and made my own. They go under your arms and are supposed to relieve pressure & be pretty useful. 

Sleeping is very uncomfortable/painful for a while after surgery (one month out and still can't get a good night's rest), this long pregnancy pillows is a lifesaver. I use this a lot even while not sleeping. I bring it down to the couch and sort of wrap it around my body so my arms can rest on top of it. I also went ahead and grabbed one and a pillowcase. I hesitated spending this much money on a pillow, but I'm so glad I did.

Button up pj's and slip on shoes. comfortable things that are easy to get on and off. I wore my pj's home from the hospital so I wouldn't have to change again. You'll need all the help you can get, so dress comy! Satin pj's have been another very useful piece of clothing. Since they are more "slippery" they make getting out of bed much easier.
Front zip sports bras-it actually turns out that I'm not allowed to wear a bra at all for the time being (I had a nipple sparing mastectomy & have to wear loose clothing). I think these will be great after my exchange surgery though!
I also went a couple of times to Goodwill to find some easy to put on shirts for cheap. I've been told it'll be about a month before I can lift my hands over my head, so I went on a search for easy to wear clothing. I also made sure to buy things larger than normal for comfort. Button ups were an obvious choice, but I also looked for tops that could be put on feet first-so things with elastic necklines in a larger than normal size worked perfectly! Truth is for the first two weeks I was so miserable I only wore pajamas. The most comfortable thing ended up being a cami or tank top loose enough to slip over my legs with a cardigan over. I did wear the blue shirt to doctor appointments though! One month out I can pretty much wear my regular clothes-although anything too tight causes muscle spasms & some things I have to have help getting off.

So far I have a super organized freezer. This beauty could win prizes. I made 11 freezer meals, plus added other super easy meals (ravioli, hot pockets, meatballs, burritos....). I even went ahead and froze a weeks worth of sandwiches for school lunches.

To go along with easy lunches, I added these little baskets to the fridge, so that the kids can pack their own lunches if ever the need arose. Honestly, at this point I don't know if I'm being a good wife, or if I'm just seriously struggling with letting go of control, because I know my husband actually IS capable of making lunch for the kids. He appreciates the effort though.

 DRY SHAMPOO- Do yourself a favor and buy this! I wasn't allowed to shower for two weeks until all four jp drains were removed. I also couldn't lift my hands to my head for those first two weeks. My husband helped me wash my hair a few times with me leaning over the tub & pouring cupfuls of water, but dry shampoo was used a lot. I also used baby wipes to freshen up a bit.

 Dial antibacterial soap to use the night before surgery, (I had to purchase HIBICLENS soap for my exchange surgery-found near the bandaids) hand sanitizer (EVERYWHERE! Especially if you have kids or people visiting), and a thermometer to check for fever.

 After my mastectomy, it was two weeks before I could shower, but I would sit on a small stool in the tub and wash up the best I could do that way (without getting any bandages wet). I would safety pin the jp drains to a cheap lanyard I purchased at the Dollar Tree. Later, when I had my exchange surgery, I was able to shower right away (even though I had drains that time) so I would shower with the drains clipped to a lanyard.
 Big, cozy plush blanket:
This one isn't really a necessity, but I bought myself a twin sized plush blanket ($20 at Target) and that thing ended going everywhere with me. It was nice having a blanket long enough to really cover up with, but not too heavy (it's shocking what will seem heavy after surgery!).

Laxatives: Keeping it real here. Between iron pills, anesthesia, and opiods, things got stopped up really bad. Have stuff on hand, just in case.

Monday, December 14, 2015

Respite weekends...

We've done respite for foster care five times now, and it has been such a blessing! I sometimes wonder what the point of us being miraculously able to get licensed was since we won't be able to do much in the coming months, but I just pray that the little we've done has been of some value. These kids are so amazing. I just love them. Since they usually only stay for the weekend, it's a little like playing auntie for me, since we get to have fun without having the daily pressures being a parent brings about. Our kids think of it as a sleepover, and get excited when their friends are coming over. Long term, we're still not certain what to do right now. I'm thinking that our time in Nebraska will have to be respite only, and once we get re-stationed, we can do something long term.
So, I wrote that first part during the middle of the visit, but there was an incident when the kiddos went back "home" that just left me heartbroken. A reminder that this isn't playing auntie, that this is giving these sweet little children & their foster families a break from their reality. Looking back over the little moments over the weekend and I see how they add up to children who desperately need love and stability. One of these sweet babies was so happy to go to bed after hearing I'd be tucking them in again...little things we take for granted. These two sweeties now cheer for our football team, and I wonder if it's because it makes them feel like they are a part of something. I also think about how being a full time foster parent has got to be the most heartbreaking thing anyone has ever have the patience to put the pieces of these children's lives back together, and dealing with the anger and hurt that they display on a daily basis. Or having to say goodbye after loving them for months or years...I feel all heartsick and mama bear worried about these kids that I've watched for three weekends.  I beg you guys to pray for these souls. For the little ones who are stuck in the system through no fault of their own. For their parents-that they would be able to overcome whatever devils are in their lives. For foster families-that they can continue with patience and love.

Monday, December 7, 2015

One month

In exactly one month I will be going in for surgery for a prophylactic (preventative) double mastectomy.  It's a little surreal. I've been thinking about this and researching this for years, and now it's just weeks away. It's something I've always known would happen if I tested positive for the mutation, but even so, its always seemed like something that was in the future, and now here we are.

It has been the easiest and the hardest choice I've ever had to make. Easy, because logically speaking, this is the most obvious choice (in my opinion). I will bring my cancer risk down from 87% (based off the very high numbers of cancer in my family history) down to less than 5%. Easy because I will get to have this surgery done on my terms and on my schedule. Not having cancer means not having to have surgery on top of chemo and radiation. The kind of cancer I'd be facing would be the triple negative, metastatic cancer-so very aggressive and very deadly.  Easy because I will never have the regret of having been able to change my path, but sitting by and doing nothing. I think of all the women who died in my family, and I am humbled by the fact that I have a chance they were never given. I am so, SO blessed with this knowledge! Easy, because when I think of my babies or my amazing husband, I know that I would do anything to have the opportunity to spend another day here with them.

Hard, because I will forever be changing the look and feel of my body. Despite how I joke with my friends, this is completely different than a boob job. Not even on the same playing field, and vanity is a tricky little monster. Hard, because I fear that on some level there will be regret, and this is obviously something that can't be undone. Hard because of the fear of recovery, of the long reconstruction process...of what the first look after bandages come off will be like. There is always the chance that I could be the small percent that would never have gotten cancer. Hard, because any kind of surgery is scary!

Back in July, I had a real crisis of decision, and I ended up writing and lengthy pros and cons list. Everything that I could think of went on that list, and at the end, I found that the pros list was absolutely the strongest. The cons list was by far more fear based. I thought it would be the other way around! Seeing everything laid out so clearly though-seeing what is at stake in black and white and in my own thoughts-really solidified my choice and I haven't wavered since. This surgery to me is exactly the same thing as wearing a seat belt. The belt doesn't guarantee anything, but it most certainly improves my odds.

So here I am. One month left of being "whole." One month left to mourn what I will lose. One month left until I have to discover what my new normal will be. One month left of having a disturbingly high chance of getting breast cancer. One month left before I can tell my kids that I did everything I could to spare them pain,  to give myself the chance to see them grow up, and to one day be able to meet my grandchildren. One month and I will be a breast cancer "previvor."

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