I’m pretty set with necessities for my surgery Friday, December 6: a nipple sparing Prophylactic Bilateral Mastectomy (PBM) with reconstruction (expanders first, implant exchange surgery to follow in the spring). I’ve received a lot of great advice and am so grateful to the brave women who have gone before me, both BRCA positive previvors (like me) and breast cancer survivors, who spent time sharing from their experience.
Some of this information may be useful to anyone having a mastectomy but there may be other important concerns for someone who has had chemotherapy or radiation or is having a different reconstruction procedure. So please know this is not comprehensive.
My hospital offered a free educational class, through their integrative medicine division, with a psychologist and a nurse to take us through what to expect from check-in to arriving in the recovery room, to the transfer to my private room and releasing me home. I’m so glad we went to the class! We discussed the emotional expectations, physical constraints and tips, such as:
- 2 weeks prior, wean off caffeine; you want the blood flow to all your blood vessels to be as optimal as possible
- Prepare for your welcome home by putting things you’ll use regularly at table height; you won’t be able to reach up for anything for a few weeks; you may not even have the strength to open the refrigerator door, so plan for this in advance
- Make sure any medications are in non child-proof bottles; you won’t likely have the strength to open them
- Sit in the back seat of the car on the way home from the hospital; if there were an accident, you don’t want to be hit with air bags from the front
- Change your voicemail with updates so that you don’t have to spend energy you won’t have those first days/weeks talking and repeating how you are doing
- Limit visits and don’t feel the need to prep for visits or entertain anyone; this is about you healing and reserving your energy to do just that
- When you are cleared to shower, know that you can’t get the drain sites wet (moisture = bacteria); loop your drains around your neck and use big safety pins to attach them (to what, I’m not sure yet!)
- Do not apply lotion, deodorant or perfume near your incisions
EMOTIONAL & PHYSICAL WELL-BEING
As I wrote about previously, I had great results from this recommended Meditation for Surgery CD when I had my BSO. I started listening to it again. Belleruth leads both guided imagery as well as affirmation meditations. She makes me feel calm and supported. I’ve also been doing yoga regularly, focusing on core strength, shoulder openings and hip flexors. For the next 4 days prior to surgery, I have physical therapy each day to further open up some of the tighter areas.
Our diet is already pretty clean and healthy. Juicing adds that extra shot of oxygen for an energizing wake up call.
For post surgery, I have been researching and watching YouTube videos to put together an exercise recovery plan. I have been cautioned about doing anything that will tear my stitches or impede the healing of the wounds so I’ll only do what feels right. This is a great video from Memorial Sloan Kettering in NY for exercises after breast reconstruction with tissue expander:
- Exercises after mastectomy with tissue expander; please get clearance from your doctor first.
I’ve also bookmarked these videos by a BRCA positive fitness coach for getting back into my body following the surgery:
After my BSO, friends gifted us an amazing and generous meal plan with a delivery service. If you’re in Los Angeles, I can’t recommend Havas Kitchen enough. Mediterranean style, healthy, great portions, local and organic, plenty of fish and gluten-free options. We are doing this again for the PBM.
Sara, Me, Redone blogger got me started with this great list.
After a double mastectomy, I won’t be able to lift my arms above my waist height easily. I won’t have muscle strength, and I’ll have between 2-4 drains for around 2 weeks, so comfort will be important. I didn’t want to spend a lot of money on things that were temporary.
- Post Mastectomy Bra with Front Closure: I was given a prescription/authorization for one of these that I was required to purchase (at no cost for 1 with my insurance) and bring to the hospital. The brand is Amoena, style is Frances 2128
- Camisole with Drainage Management with step-in entry and removable drainage pouches (my sister had something like this after her mastectomy that she sent to me to reuse for my surgery)
- Zip up track jackets with pockets: I bought a few at Marshalls for around $24 each. Check to make sure the inner pockets are sewn at the bottom so you can put your drains on the inside of the jacket
- Spaghetti Strap Camisoles, stretchy for step-in entry
- Bandeau tops, again, step-in entry
- Wireless bras for later in recovery; my little sister bought me a 4-pack of these and they are super comfortable
- Yoga/lounge pants
- Button Down Shirts; something I don’t normally wear so I bought some inexpensive ones as an alternative to the track jackets
- Button Down Pajama Tops
- … don’t forget to pack a zip up or button down shirt in your hospital gear for the drive home
- Post Mastectomy Breast Comfort Pillows for the car ride home to protect your sides, incisions and sore muscles and while home on the computer, in bed… I met cancer survivor, mom and founder of Precious Survivors, Shirley, at an event with her daughter, Rachel, BRCA2 previvor and author of Ticking Time Bombs. Shirley hand makes these little heart shaped pillows.
- Extra King Size Pillows to prop up in bed and use for side support. I understand that I won’t have the muscle strength to get up from a flat lying position and we do not have a recliner, so we bought some extra full king sized pillows at Marshalls so I can sleep propped up; I’ll probably also add a neck pillow
- Straws: if you have tightness in your chest and find it hard to take deep breaths after surgery, breathing through a straw is supposed to help. We bought metal straws at a bar supplies store, like these
- Caution: If you are considering using a heating pad on your stomach if you are suffering from constipation, note that you DO NOT want the heating pad near your breasts/wounds. You won’t have sensation there and you could get burned without realizing it (your skin is very sensitive from the surgery).
What’s on My Bedside Table
- Steel water bottle
- 2nd Chakra aromatherapy spray
- Organic vanilla rosemary lip balm
- Olbas natural inhaler to open nasal passages with a refreshing cooling feeling
- Bell (gift from a colleague; Jeff had a chuckle)
- Blum Naturals organic chamomile natural cloth face wipes
- Honest plant-based natural cloth body wipes
- Cucumber cool face toner spray
- Tea Tree and Lavender deodorant
- Bach Rescue pastilles for natural stress relief
- Origins “Peace of Mind” on-the-spot relief
- Arnica gel
I know this surgery will test my pain limits. But I also know that pain will be temporary. The physical changes will test my vanity. I’m filled with scars, they’re each a symbol of what I’ve already overcome: double knee reconstruction and learning to walk again with long scars down my knees, experimental surgery to rebuild the cartilage in one of my knee years later with lots of little scars, another surgery to clean up the other knee with little scars, melanoma and sentinel node biopsy–ok, I messed up this one by playing volleyball too soon and split my sutures but the scar is now faded and I learned about needing to be ok in the stillness, pre-melanomas with railroad tie looking scars, ovaries/fallopian tubes removed with barely perceptible scars… They are all my story. Acceptance. More scars, and a reconstruction process that by next summer, I should be feeling back to myself and embracing of what should be a very close approximation of me. Each day, a single step toward recovery. I’ve done it before. As many women who have come before me, I can do this.
I’m incredibly fortunate to have the choice to avoid a breast cancer diagnosis. I’m also looking forward to a life without the constant aggressive surveillance for ovarian and breast cancer that had me waiting hopefully for negative results for breast and ovarian cancer 8x year. Not to mention the additional 4x year skin cancer exams as I’m a melanoma survivor– and I would like to stay that way.
In the meantime, I’m visualizing my successful surgery.