One year ago, today, I had a prophylactic double mastectomy to get rid of my ridiculously high breast cancer risk (about 87%
A year after my mastectomy, I look back, and realize how crazy it was to do all of this during nursing school, but somehow everything worked out (even with my boob hole complication).
It makes me emotional to think of all I went through in the past year with my 3 surgeries, tissue expander nightmare, and completing nursing school. But for me, it was all totally worth it, because for the first time since I found out I was BRCA 2+ I don’t have the stress of my breast cancer risk looming over me. My ticking time bomb breasts have been replaced with my silicone foobs (fake boobs), which feel like my own breasts now. There’s no way I could have pulled it off without my support team. I can’t begin to express how much I appreciate all the friends who took shifts to come take care of me, delivered meals, sent care packages, and made sure I had everything I needed during recovery. My mom was such a huge help and support for Adam and me, and Adam is the best husband/caregiver anyone could ever ask for.
Thanks to everyone for their support through this journey. I’m still updating the site to provide more resources for those searching for information about preventing cancer and managing these types of surgeries.
Finally, I am happy to announce that starting next week, I will be an oncology nurse! I am so thankful to work with oncology patients in the field of nursing that I’m so passionate about.
Quick but exciting milestone post!
1. I graduated nursing school!! Just one more exam to get me the two letters I want most, RN 🙂 No pressure. In all seriousness, I am pretty proud of myself for finishing school on time and not missing class/clinicals throughout my surgeries.
2. Adam and I went to Disneyland to celebrate! This was especially exciting because for a long time after my mastectomy, I couldn’t go into crowds and I definitely would not have been able to go on any rides. It was a really fun day!
I’m honored to have been invited to speak about my BRCA journey at the next Oncology Nursing Society (ONS) meeting in LA. I’m also studying for my NCLEX examination (the board exam to give me my nursing license). NCLEX studying has been pretty much all-consuming, so it was really nice to take a step back to prepare my ONS talk and see how far I’ve come on this journey.
My presentation is a combination of information that nurses would find helpful to know about BRCA, and also my personal story. I incorporated a lot of photos in the talk, and it was incredible to look through the recovery photos and think about how far I’ve come. I can’t believe it’s been almost a year since my mastectomy. I couldn’t have done it without everyone’s support.
Also, I’m in the process of updating the site to include more resources, so stay tuned! Now, back to NCLEX land.
I’m bummed that I have to miss this year’s FORCE Conference. I had such a great time last year and I learned a ton! I can’t go because I have to stay in LA for the NCLEX exam prep course. The NCLEX is the exam I will take to become an RN, so I definitely needed to stay in town to focus on my studies. I will definitely be keeping up with the conference – follow me on Twitter if you wanna see what’s new in the HBOC (hereditary breast and ovarian cancer) community!
I know I’ve been a bit of a slacker lately when it comes to posting. Sorry! I promise I haven’t been a slacker in the rest of my life. Things have been a bit nuts with finishing out nursing school (t-minus 10 days until graduation)! I thought things would calm down as school finished, but there still have been plenty of group projects, diagnostic tests, and paperwork to prepare to graduate and take board exams.
Yesterday was my last clinical rotation, which is really hard to believe. It was my public health rotation, and I worked with an awesome organization called Nurse Family Partnership. It was really cool to do home nursing and see how nursing works within the community.
Another thing that has been keeping me busy was the Oncology Nursing Club at UCLA. I blogged about it before, but this was the club my friend from school and I started because there was no oncology interest group for students at UCLA’s nursing school. We had our final event of the year last week and it was truly inspirational. It was a panel discussion called “What is Oncology Nursing?” We had 4 oncology nurses and 2 students who did oncology preceptorships talk about their experiences. My favorite quote from the night was a nurse who said, “Oncology nursing is the intersection of science and spirituality.” Hearing about oncology nursing and stories about the patients who touched these nurses’ lives was incredible. It felt great to have such a successful event and to hear students say they had an a-ha moment about oncology from attending was awesome.
Thanks to nurse.com for featuring my story in an article on their website/magazine! Check out the article here.
A few weeks before my mastectomy, I posted a list of the supplies I had at home to prepare for surgery. Three surgeries later (and fully recovered – woohoo), I wanted to revamp my list to help people preparing for a mastectomy. Here’s what I found the most helpful and what I wish I would have known ahead of time.
Most Helpful/What I wish I Would Have Known
- Biggest piece of advice – expect the unexpected! Have a game plan but know that things can change at any time and be okay with that. Have a medical team you really trust in case things don’t go as planned.
- Keep records of all your expenses. Even if it is covered by insurance, everything can add up quickly (I’m gonna have medical bills for a loooong time). Having records makes things easier at tax time.
- Sleeping can be really rough. It was one of the hardest things for me at first. Try to be patient while you figure out what works for you, and keep in communication with your medical team about sleeping issues.
- Practice getting in and out of bed WITHOUT USING YOUR ARMS before surgery, this way, you’ll be used to it when you can’t use your arms
- Ask the pharmacist/person picking up medication for you to make sure all prescriptions have childproof caps. You won’t be able to take off the protective caps on your own.
- Before surgery, make sure everything you need is at waist level since you won’t be able to lift your arms.
- Get an underarm wax before surgery. You won’t be able to shave for a while and I was really happy I did this.
- If you can, get a wash/blowout at a salon or from a family member/friend. I went to Drybar several times and it was so helpful.
- Work out before surgery and try to work with a trainer if you are able. This really helped me prep for surgery, especially working on my core.
- Be patient! This was a tough one for me. Whether it’s going into surgery uncertain what the outcome will be, finding the right body wedge pillow (I cried when I found mine) or finding a sports bra you can pull over your shoulders (another victory for me) – this whole process can really test your patience. Try to stay calm because your body is already going through enough!
- If something looks off, take a picture. My surgeon let me text her with photos when things looked suspicious, and it was really helpful.
- Have nausea medication handy. Vomiting + mastectomy = painnnnful
- Caregiver burnout is very real. Try to have a plan so your caregiver can get out of the house and get fresh air. My husband’s walks to the coffee shop were a great refuge for him.
- Most importantly, ask your support network for help. I couldn’t have gotten through this without my incredible support system and asking for help was a lifesaver. Google docs really helped with setting up shifts for friends and family to come over. My friends helped keep me company, watch tv with me, bring food over, give my husband a caregiver break. My husband made sure I took medication on time and on a full stomach, and kept me sane.
- Pillows are key for recovery. These are the pillows I used the most: Axillapilla for under my arms, body pillow for sleeping in bed, myrecovery pal to help keep arms up while napping, and a body wedge for the couch.
- Pre-packed hospital bag
- Tons and tons of huge shirts that you can step in and out of
- Spray on deodorant! You won’t be able to use roll on and you will be stinky 🙂
- Mastectomy seatbelt cover
- This surgical bra was incredible after surgery and has loops to hold the drains. Luckily, my hospital provided them automatically, but if not, I would recommend ordering one if your doctor approves.
- Silk button up pajamas – these help to slide in and out of bed
- Button up t-shirts
- Elastic band pants
- Drain holders for shower
- Toiletries to help when you can’t shower (dry shampoo, cleansing wipes)
- Throat lozenges (for after being intubated)
- Alcohol wipes and gloves for drain cleaning
- logs for drainage and medication
- This book was helpful to read before deciding to move forward with surgery
I’m part of the awesome Oncology Nursing Club at UCLA’s nursing school and was contacted about a 12-year old boy named Riley, who’s battling stage 4 clinical group 4 alveolar rhabdomyosarcoma. There’s a Facebook page called “Team Riley” where people from all over the world are posting pictures with signs of support for #TeamRiley. ONC Club took a picture for Team Riley and I hope you all do too. If you want to follow Riley’s page on facebook and/or post a picture for him, follow the “Team Riley” community page here!
I had my clinical rotation today for public health, so I was up pretty early. Scrolling through online news this morning, I saw the sad news that actress Rita Wilson was diagnosed with breast cancer (invasive lobular carcinoma) and underwent a double mastectomy and reconstruction. Thankfully, she is expected to completely recover and her husband, Tom Hanks, has been at her side (yay for amazing hubbies).
Rita was very brave and decided to go public with her breast cancer diagnosis. The most important thing about her announcement was her story about how she got diagnosed. Rita had a condition (lobular carcinoma in situ) requiring her to have annual mammograms and breast MRIs. She had two breast biopsies performed, and the results showed no cancer. At this point, most people would drink a glass of champagne and call it a day. But, thankfully, Rita’s friend suggested she get a second opinion on the pathology results, and that is when her breast cancer was found. She got a third opinion on the pathology, which also showed breast cancer.
Had she not gotten multiple opinions, she may have lost her life. Rita’s message is very powerful, “I share this to educate others that a second opinion is critical to your health. You have nothing to lose if both opinions match up for the good, and everything to gain if something that was missed is found, which does happen. Early diagnosis is key.” Read more here and please listen to Rita’s advice. Go for all of your cancer screenings, whether or not you are high risk. If your gut tells you something isn’t right, see your health practitioner.