I’m excited and honored to be speaking in a panel discussion at BinderCon LA today! The topic is “Self-Care, wellness and social media: How health writing is changing in the current climate”. If you happen to be at BinderCon, please stop by! Details are here.
I’ve had unexpected BRCA drama in the past few years. A lot of issues are because of my melanoma risk related to being BRCA2+. Even though my mom is BRCA2+ and had malignant melanoma in 2008, I didn’t think the melanoma risk associated with being BRCA+ would impact me so much. Maybe it’s because BRCA is known as the “breast and ovarian cancer gene.” Maybe since mastectomies and oophorectomies seem like such radical prophylactic surgeries, other BRCA associated cancers are swept under the rug, especially with media coverage. Angelina Jolie having an atypical mole definitely isn’t as headline grabbing as Angelina Jolie prophylactically removing her reproductive organs and breasts. I’d definitely rethink my guilty pleasure subscription to US Magazine if the cover story was about weird looking moles.
So, I went to the dermatologist for my annual skin checks, wore sunscreen – and thought
that would be the extent of it. Actually, that was the extent of it, until Nov. 2015, when I had moles biopsied that turned out to be pre-melanoma. I ended up having both moles removed through a process called a skin excision. Since 2015, I’ve had 6 biopsies and 5 of them turned out to be pre-melanoma, requiring excisions. The excision is required because of my BRCA mutation and making sure they get all of the borders. The good news is – being proactive and knowing I’m at high risk has led to me discovering all of these when they were pre-melanoma and not melanoma. The bad news is – the procedures and recovery are not very fun, and I’m collecting a cool Frankestein-ish collection of scars.
Of all the excisions, the scariest was the most recent, because I’m pregnant. Even though mole changes are common during pregnancy, I’m super lucky to have an amazing OB who noticed the atypical mole during my first exam with her. She urged me to keep an eye on it because of my BRCA mutation, so I followed up with my dermatologist and she agreed that it was suspicious looking, and biopsied it. It turned out to be pre-melanoma and I had to have a pretty gnarly excision because of the weird location of the mole (inner thigh/butt are), and only wanting to take tylenol because of the pregnancy. Also, having an excision that is a literal pain in the a$$ isn’t helped when you have to get up and pee every hour because you’re pregnant. It was also the scariest time waiting for results because I was completely freaked about what would happen if it was melanoma and the risk of it spreading to the fetus. Thankfully, they caught everything in time. I also was referred to a specialist who I’m seeing more frequently throughout pregnancy to take pictures and measurements of all my moles, to make sure any changes are just pregnancy related, and nothing suspicious. I just had my last prenatal mole check with that specialist and everything looked a-ok!
So, make sure to get your moles checked out! Know your ABCDE‘s, see a dermatologist, and wear sunscreen. Here’s a helpful video about self skin checks.
Thanks for the patience while I re-did the Funky Genes site… and everyone who emailed me while the site was down for info. The question I was asked most while the site was down was for the mastectomy checklist! It’s right here on the new site.
I’ll be back blogging about adventures in BRCA land soon, but first – wanted to do a “beta test” that I learned about from one of my fave shows, Silicon Valley. Please check out the new site and comment or email me if you catch any bugs or have any suggestions for new content/changes. Hope you all enjoy!
I’m in the process of updating my site, should be up and running soon! If you have any BRCA or mastectomy related questions in the meantime, please contact me at email@example.com
My friend just told me about this really cool organization called Superhope. Even without knowing anything about it, you can tell it’s rad because of the name, right? It was founded in Dubai and helps children with cancer feel positive and empowered by dressing up as superheroes. It is such a cool idea and I’m glad to hear about organizations focusing on the importance of a positive mental attitude during illness. This part of care is overlooked a lot. Even with my surgery, which was preventative, I had moments where I felt low confidence or down in the dumps. I can’t imagine what the mental attitude would be going through cancer, especially as a child, so it is so so so important that organizations like this exist.
Anyway, check out an article about Superhope here and their awesome site here.
Sorry for being MIA for a little while. Things have been pretty busy since my last post. I turned 31 and had a karaoke party. It was great to be able to hang with friends, dance, sing, and enjoy some beverages. It was one of the first times I felt 100% back to my old self since my mastectomy in August. I’ve also been in my preceptorship/immersion part of nursing school, which means I’ll be spending 300 hours in Labor & Delivery this quarter. It’s been awesome. Sadly, my allergies got really really bad last week and I ended up getting pretty sick with sneezing/coughing/sore throat. I’m thankful I didn’t get sick at all during the initial recovery process because my chest is pretty sore from all the coughing, and I’m 6 weeks out from surgery. I can’t imagine how badly it would have hurt to be coughing a lot right after surgery, even laughing after my mastectomy was almost too much to handle.
Right now, I’m trying to balance feeling more and more like myself with making sure I still give myself enough time to rest and continue with my recovery. I’ll definitely be blogging more often, now that I’m feeling better!
I had my 1 month post-op appt today and everything went really well! The tissue damage is still healing nicely and everything is looking good. I got cleared to exercise and the 2 week countdown to side sleeping begins tomorrow. I also learned exercises to prevent capsular contracture (aka hardening) of my implants. I’ve gotten used to wearing a sports bra 24/7 but am really excited for when I can sleep without a bra and wear wireless ones. I can also cook again, as long as I’m super careful not to burn my numb boobs lol, so I’m planning on a lot of crock pot dishes. I start my clinical rotations this week, I’ll be doing around three 12-hour shifts/week this quarter.
I also had my first physical therapy appointment last week and it went really well. My range of motion and strength are great and even better than they were before I had the surgery (those expanders were definitely preventing me from using my full motion). I only have to go to PT once a week for 3-4 more weeks and then I’m all done.
Another recovery highlight was that Adam and I went out w friends on Friday night, and I was able to dance! I love love love dancing, so it was really fun to finally be able to after basically 5 months. I am so excited to be able to go back to Zumba and Cardio hip-hop. My next post-op isn’t for 6 more weeks, and I am definitely enjoying feeling more normal each day 🙂