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
This’ll be a short post because I’m totally exhausted from finals week. As finishing my last exam at 7:00 tonight – I’m done with with school for this quarter – woohoo, I made it (even with a hole in my boob)! Now, I finally had a chance to get everything together for surgery. I spoke with my surgeon and anesthesiologist (they both called me tonight, awesome). Adam and I went through all my paperwork and plans for tomorrow. I ate a burger and sweet potato fries for my last meal before surgery, and opened some kick ass pre-surgery/post-finals/Hanukkah presents from Adam. He got me 3 of my favorite things – winter dream tea from Coffee Bean (aka Christmas in a cup), a Beyoncé sweatshirt, and a John Cena action figure.
My surgeon is hopeful that I can get implants on both sides tomorrow, but it won’t be until we are in the operating room that she makes the final decision based on what is safest and will heal the best. Either way, my right expander is being switched for an implant and the deep tissue injury will be cut out and supported with a graft underneath on the left. Whether or not I get an implant or keep the expander on the left is to be determined. If I don’t get the implant on the left, I would have one more surgery down the line to switch it to the implant.
Despite all the craziness, I am feeling pretty calm. I’m confident in my medical team and I feel very supported by my community. Adam will post with an update sometime tomorrow. Please send good vibes/thoughts/prayers tomorrow. My surgery starts at 9am and should last about 4 hours. Much love.
I had my pre-op appointment today, which was supposed to be the “fun” implant shopping appointment. Well, that tissue damage I sustained in October reared its ugly head again today, making the appointment not so fun. Last time I saw my doctor about the damage, it was healing very well and was covered with a sterile bandage. Today, when the bandage was removed, there was a small area that had not healed, and is now basically a small hole.
Luckily, my surgeon is amazing, and she was immediately coming up with options for me to heal, have my surgery as scheduled, and keep on track with school. She removed some saline from the expander to help it heal, and then stitched up the tiny hole. My surgeon also told me I could text her a picture each day to make sure it is looking good. My friend was with me to hold my hand, and also to watch the whole thing (she’s a nursing student too so it was pretty cool she got to watch).
Now, I just keep an eye on it and hope/pray that it stays looking the way it looks today. Then, my exchange surgery will still take place on the 16th, but will be a little more complex of a surgery. She will remove the damaged area, and replace it with skin graft, and then continue with the exchange. The hope is that I can still get the implants in, just at a smaller size than my expanders are at now. The worst case scenario is that she can only put in the implant on the right side, and I keep the expander in the left until it is all healed. The good news is that even though it is a longer surgery than originally planned (4 hours) and I know I’ll have drains (boo), the recovery time is still exactly the same.
Please send vibes/prayers that everything goes as planned (with both implants placed), I can have the surgery on 12/16, and that I heal well!
Today marks 2 weeks until my exchange surgery! I have been studying 24/7 for finals, which has been a welcome distraction and has helped the time pass by very quickly. I have my pre-op appointment on Thursday, which I am really excited about since I finally get to go implant shopping. My surgeon said it’s about time I have a fun appointment, and I couldn’t agree more. Here’s a list of things I’m doing to prep for the exchange, hopefully it will help any of you planning an upcoming surgery.
- Eating clean
- Switched from Aleve to Tylenol
- Hyperbaric oxygen treatments
- Strength building at physical therapy
- Arranging for friends/family to come and help while I recover
- Pick up prescriptions and make sure all bottles are non-childproof
- For the mastectomy, our friends gifted us with a home meal delivery service – we plan to order from them again (it was a huge help for Adam not to have to cook)
- Make sure everything I need is at waist height
- Practice getting in/out of bed without using my arms
- Get a blowout the night before surgery (I can’t shower for 3 days post-surgery)
- Underarm wax (I can’t lift my arms above my shoulders for 3 weeks after surgery, so this prevents me from needing to shave)
- Reorganize closet so button-up shirts/shirts I can step into are easily accessible
The last time I had a 1 month countdown was back in July before my mastectomy. This 1 month countdown is much more exciting because it’s a month until my final surgery, called “the exchange.” The exchange surgery is when my turtle-shell tissue expanders are exchanged for squishy implants. It’s a much less invasive (no tissue removal), much shorter (no more 7 hour surgery), outpatient surgery (no more staying 2 nights in the hospital). I also should be a lot more comfortable after the surgery because of how much better the implants will feel than the current tissue expanders I have in, which kind of feel like tupperware in my body. The recovery is still similar in terms of restrictions (I’ll be in t-rex no arms above my shoulders mode for another 3 weeks), but it is supposed to be wayyyyy less painful. I know it is still surgery, but after going through the mastectomy, I’m optimistic about how much easier of a recovery this will be.
Here are some things I’m really looking forward to after my exchange:
– Sleeping on my side (I have had to become a back sleeper since August) 6 weeks after surgery
– No more 24/7 bra wearing, which I’ve been doing since August
– I’ll be able to work out again after about 6-8 weeks
– Squishy implants instead of rock hard expanders
I’ll update everyone after my pre-op, on 12/4!
Today marks the 10 week mark since my prophylactic mastectomy. I’m so thankful to feel pretty good only 10 weeks out, especially considering the tissue damage I had and having to go through the expansion process twice. I’m so happy that I’m done with expansions! My muscles were pretty sore after my last expansion on Thursday, but I’m feeling a lot better now.
I’m also 6 weeks pre-op from my exchange surgery, which I’m so excited about! My tissue expanders kind of feel like turtle shells and an underwire bra inside of me, but I’ve strangely gotten used to it. It’s still uncomfortable though. My final surgery in 6 weeks will be a huge milestone because I will swap out my expanders for implants, and also I will be done with my surgeries! Having 3 surgeries in a little over 3 months, I’ll be really glad to have it all in the rear view mirror.
Some exciting stuff is happening too. My alma mater USF featured my story, and so did my current nursing school (and soon to be alma mater) UCLA. There is also a larger UCLA feature in the works, so I’ll keep everyone posted on that. For now, back to studying for my exam on Thursday!
Here’s a pic taken back in June at the FORCE conference already looking forward to my exchange surgery!
The big day is finally right around the corner. I check into the hospital at 5am tomorrow morning for a 7am prophylactic mastectomy. The surgery should last about 8 hours and Adam will be blogging sometime tomorrow or the next day with an update. The mastectomy consists of removing all my breast tissue (including from the armpit and as high as the clavicle) followed by a reconstruction with the tissue expander. My breast and reconstructive surgeon will work together during the surgery. They will fill the expanders a bit and then I’ll come into my reconstructive surgeon’s office weekly for expansions.
I’m nervous about the surgery, mainly about the pain afterwards. But I know I am strong and I’ll get through it. I’ve talked to a lot of women who had gone through this surgery and none of them regret it. They have been open with me about the pain so I am going in knowing what to expect.
I had a good day today – ran the final errands I needed to run, went to a hyperbaric oxygen treatment, had lunch with a friend, and got my hair blown out since I won’t be able to wash it for a while. My mom is coming over tonight and she, Adam, and I will watch the Emmys and relax a bit. Luckily my surgeon prescribed me some valium to help me sleep tonight.
So please send me good vibes/energy/prayers tomorrow!