Thanks so much to everyone who checked in after my last post about the possible tissue damage saga.  To catch you up on the details, check out my last post. My reconstructive surgeon is incredible and had me text her pictures of how the possible damage was progressing. It was clear that it got worse pretty quickly (looking like a bruise on Thursday to a blister with a ton of bruising around it on Saturday night). When I sent her an updated picture on Sunday, she asked me to meet her in her office so she could take a look. She thought I could wait until Monday to be seen, but wanted to be safe (again, what an awesome surgeon).

She believes I accidentally hit my expander somehow and didn’t notice because my breasts are still numb. Normally, a bruise will heal, but because my blood flow is compromised because of the mastectomy, it led to tissue damage and created a blister over the top layer. This is actually good news, because my body provided a sterile cover for the tissue. She taped it up and I am going to see her again later next week for her to see how it is looking. She also removed 200 CCs of saline from that side so my skin could relax and heal more quickly. I also asked her to remove 100 CCs from the right side so I wouldn’t look completely uneven 🙂

Luckily, I don’t have any restrictions right now except cardio, so I can still go to school and clinicals. My surgeon is hoping it heals on its own and then she can slowly re-expand it. She’s also pretty certain I won’t have to delay my exchange surgery (swapping out expanders for implants) which I am really happy about since I am on such a tight timeline doing this all while in school. Also, a mastectomy is an extremely complex surgery, so complications are not uncommon and I’m relieved she thinks it can heal naturally. When I went into the appointment in her office, I was hoping for the best but preparing for the worst, thinking I might have to go into surgery to remove the tissue – so I am very relieved. It is still touch and go though so I am laying low except for school stuff right now. Sadly, we were supposed to go to our good friends’ wedding in DC this weekend and had to cancel our trip, which is a huge bummer.

I’m also doing hyperbaric oxygen chamber treatments again to hopefully promote healing. I’ll keep everyone posted on how I’m doing, but this could have been a lot worse. Please send good healing vibes/thoughts/prayers that I heal naturally.

I started school again this week which was good but also tough. I was still sore from Monday’s expansion so there was a lot of anxiety about going back – especially having a math test on day one. But it was a lot better than I expected (not the test, that was rough). I got a lot of friends checking in and giving me gentle hugs and well wishes, and wasn’t too sore (especially thanks to my homies carrying my laptop and backpack for me).

The bad part was a bruise suddenly appeared Thursday morning and it’s progressively gotten worse. Today I put on my nursing student hat and did an assessment on it and it definitely felt more like tissue than a bruise. I called my reconstructive surgeon and she asked me to send her pictures and she’d call me back. When she called back she said that it appeared to be tissue damage and that sometimes people are numb and the expanders can hit against something and they don’t notice. Her advice was to stay in and lay low  and send her a picture tomorrow afternoon. If it looks worse she will have me come in to see her and possibly remove some fluid. If not, I’ll see her on Monday. She just wants to make sure my blood flow isn’t compromised.

Of course this is scary but I’m just trying to take my husband’s advice and just think about best outcomes rather than worst outcomes. So I’m just going to lay low, not use my left side, and watch some distracting tv 🙂

I had my fourth tissue expansion this week and it hit me pretty hard for a few days. It was the first tissue expansion since being able to lift my arms above my shoulders. So, right after being filled with 100 CCs of saline I lifted up my arms to pull on my bra and I felt a sharp pain in my muscles. Afterwards, I took painkillers which helped with the pain. So I spent time with my friend at home, she brought me lunch, and we watched some trashy TV. I felt good until the painkillers wore off and then I felt pretty weak.

I think I did too much – I have to remember that even walking the dog can be too much after an expansion. I feel much better now though. Luckily, I probably only have one more expansion or maybe even none at all. I’ll find that out on Monday so I’ll keep everyone posted!

I seriously cannot believe that tomorrow marks one month since my prophylactic mastectomy. As weird as this may sound (since having a prophylactic mastectomy is a pretty big picture decision) – I am normally not that way. Yes, I’m great at planning, but it’s sometimes hard for me to look at big picture things. Luckily Adam is the opposite, which is part of the reason we make such a great team. I am also not the most patient person in the world (once again, luckily Adam is way more patient than me). All of this info is to give you some background on why it is hard for me to step back and look at how far I’ve come in the past month. I’m trying to do more of that, because right now, I can see myself focusing on some of the negative aspects of the surgery rather than how far I’ve come. Maybe it’s because of the loss of my natural breasts and the current uncomfortable nature of the expanders.

So, let’s focus on some milestones. I started showering by myself for the first time last week. That is a huge step for me since it took 3 people to help me shower when my drains were in and 2 people until I could lift my arms above my shoulders. It was really nice to be able to wash my own hair (although my friends and Adam did such a great job before that)! I will no longer take for granted things like being able to shower. Ultimately, I think this whole experience will make me a much better nurse, especially since I want to be an oncology nurse.

Also, I drove for the first time this weekend! I was cleared to street drive at 2 weeks and highway drive at 3 weeks, but I didn’t feel comfortable until this weekend. My pec minor muscle is pretty sore so I was a bit worried, but I did great and even tried u-turning to make sure that felt okay and it did.

I’ve been off prescription painkillers for over 2 weeks! I only take painkillers now on the day of expansions, and next week will probably be my last expansion.

I started physical therapy last week. My range of motion is perfect on the left arm and only 10 degrees off on the right due to some swelling which will go down. My resistance is stronger than it should be at this point thanks to the personal training I did 6 days a week the month before surgery. I also have done 3 mile walks with Adam a few times over the weekend.

Finally, I had my post-op with my breast surgeon last week and from now on, I will see another doctor in her practice, since I am no longer high-risk for breast cancer. She said that as sad as she is to lose me as a patient (even though she is always here for me if I have questions), she is so happy I am now at less than 1% risk of breast cancer instead of up to 87%. I also will have a 6 month check-in with their office for a breast exam and ultrasound, and then only every year after that. No more yearly mammograms and breast MRIs, woo-hoo!! That is what really hit home for me more than anything so far and reminded me why I chose to have this surgery in the first place. Yes, there have been some dark moments in the last 4 weeks, but being in control of my health and being a proactive BRCA previvor is who I am at my core.

Yes, there are some weird things like my rock hard expanders feel super heavy when I lie down, I feel like I have a constant underwire bra on, and I am still not 100% independent, but I have come such a long way. I am medically cleared to start my clinical rotations on time in 3 weeks and to start up with class again next week. Thanks again to my support system, which really helps me to focus on the positive.

I had my first physical therapy session today and it went well. I’m going to go twice a week and we will start working on strength soon. Today was range of motion evaluation and learning some exercises to do at home. I have some scar tissue buildup on the right side near my armpit (where they removed breast tissue – yes, breast tissue is also removed from your axilla aka armpit) so they showed me a massage that could help. Luckily, it’s one Adam can help with and only takes about 2-5 minutes. I also have 3 exercises to do at home and a self massage to hopefully make the expanders more comfortable.

My range of motion is good on the left side and only off by 10 degrees on the right, so things are looking good. I’m really happy I don’t start clinicals again for about a month so I know I will be ready by then thanks to physical therapy and my awesome surgeons and support system.

On Monday, I should find out how many more expansions I have left, which I’m excited about. They aren’t necessarily painful, but there is definitely discomfort that day and the day after – since they are stretching the skin and also the pec major and serratus muscle attached to the alloderm – so I’ll be happy when they are done. I’m also hoping my rock hard expanders feel more comfortable through physical therapy. I also get to look at pictures of boobs and decide on implants on Monday so I’ll be posting about that for sure!

I haven’t driven yet so Adam and I are going to try it out this weekend – I’ll blog about that on Saturday 🙂

It’s Rachel again! Back from my Benadryl induced haze. Thanks to Adam for his sweet blog post while I was busy dealing with my skin irritation from the tape. Thankfully, some cortisone, aquaphor, and aloe helped clear it up. I had another expansion on Monday and one of my friends from school was able to come. That was cool, because I think it’s a pretty interesting procedure to see as a nursing student, so I’m glad she got to watch. Plus we went back to my house and watched Bravo afterwards, which is always a plus.

The tissue expanders are rock hard and live up to their reputation of feeling like ski boots. It makes it very difficult to sleep but I’m slowly getting used to them. I should only have 2 more expansions left so I hope they settle in a bit more after that (although I’ve heard they never are truly comfortable). I’ve been reaching out to my community of friends who have had prophylactic mastectomies for advice and that’s helping. My in-laws came to visit this weekend and it was really nice to see them and we went out to dinner. Also, my mom went to multiple Redbox locations to rent The Other Woman for us to watch after my latest expansion, which was a fun distraction. Adam spent about 30 minutes trying to get all the remaining adhesive off me even though he was tired from work, he is such a rock (even more so than my expanders).

Today is the 3 week mark which is very exciting because I can lift my arms above my shoulders and can wear a non velcro bra (woo-hoo). I took an über cab to Nordstrom today and got some new wireless stretchy bras to sleep in.  I can also start light workouts but I’m waiting to see how my physical therapy session goes tomorrow before any cardio. So things are looking up and only 90 days until my outpatient surgery to switch the expanders to the much more comfortable implants (not that I’m counting or anything). There are some good things about waiting until December for my swapout. Most importantly, it will give me the best outcome for the final surgery. Also, I’ll be super busy with school so hopefully time will fly by. Also, Halloween falls into the time when I have my rock hard expanders in so I think I know what my costume will be this year (ps if you’ve never seen Mean Girls, rent it ASAP).

It’s Rachel! I’m so happy that my mom and Adam were able to guest blog while I was in serious recovery mode. Tomorrow marks 2 weeks from my prophylactic mastectomy and I’ve come a long way. But, my surgeon was totally right when she said this recovery is two steps forward, one step back. Every time I overcome one pain or obstacle it seems a new one comes my way. I’m really excited for a week from tomorrow (the 3 week mark) because I will be able to lift my arms over my shoulders and I can wear a sports bra instead of this weird velcro surgical bra. I’ll also start physical therapy then.

I got the drains out last week which has made things a lot easier and I’m off my narcotic painkillers, just on extra strength Tylenol now. I finally slept in bed for the first time (instead of a recliner or couch) a few nights ago which I thought would be a big relief but has turned out to be quite a challenge. It has been taking a while to get used to how to comfortably lie in bed now that I have the expanders. They feel really heavy on my chest when I’m lying down and I’ve only had one expansion so far so I imagine it will get worse. I’ve also been pretty emotional like crying at things like finding a good incline wedge for bed, my dog watching over me, Adam helping me, and even crying if I laugh too hard because it hurts.

Now onto the good stuff, since I passed the 10 day mark, I am allowed to do short excursions. Last night, Adam and I went to a new theater called iPic and saw Guardians of the Galaxy. One of my friends who had a prophylactic mastectomy recommended this theater because they have reclining seats, pillows, blankets, and they deliver popcorn to you – the staff was so nice and accommodating. Basically the best possible scenario for seeing a movie post-mastectomy.  It was really nice to have a date night and the movie was awesome, as was the whole experience.

Most importantly, a special shout out for all the support I’ve received. So many people have reached out with their support and good wishes. I’ve had so many calls, texts, emails, Facebook messages, cards, flowers, and even edible arrangements. One friend even ordered food for us for 2 weeks from a home delivery service! Adam has been the best caregiver. It has been exhausting for him but he’s been so supportive and such a trooper. Also my mom has come by often and made food and helped out a lot. And my in-laws are visiting me next weekend from San Diego! My whole family has been checking in on me all the time, sending homemade cards and care packages. Adam’s coworkers have been checking in on me too, bringing me juices and even visiting me in the hospital. And so many friends from nursing school helping out with everything from visiting me at the hospital and lifting my spirits, watching bad Lifetime movies with me at home, helping with drains and dressings, and even helping me shower since it took 3 of us when the drains were in. I feel completely humbled and just want to send all my love and thanks.

look, I’m blogging!