Breast cancer survivor with the recently discovered PALB2 genetic mutation talks about what self-care might look like before, during and after her preventative double mastectomy.
Barbara Tako is a breast cancer survivor (2010), melanoma survivor (2014) and author of Cancer Survivorship Coping Tools–We'll Get You Through This. She is a cancer coping advocate, speaker and published writer for television, radio and other venues across the country. She lives, survives, and thrives in Minnesota with her husband, children and dog. See more at www.cancersurvivorshipcopingtools.com,or www.clutterclearingchoices.com.
My double mastectomy with reconstruction began a few days ago. I say "began" because it sounds like it will be a long process: plus or minus about a year if things go smoothly.
Smoothly, yes, pun intended. So here is the deal, I give lip service to self-care all the time, but I am not as good at walking my talk as I like to think that I am.
I recently read two helpful mastectomy books called Now What? A Patient's Guide to Recovery After Mastectomy
by Amy Curran Baker and Dangerous Boobies: Breaking Up with My Time-Bomb Breasts
by Caitlin Brodnick and Rachel Bloom. I like to think I can work from a list, and both books provide several very helpful ones. Some of my thoughts below come from those lists and others are just mine as I tried to ponder self-care through this next part of my process.
Before the initial surgery, I wanted my ducks in a row. For me, this included adequate household supplies (laundry detergent, soap, paper towels, etc.) for a few weeks and supplies for me personally (lip balm, wipes, magazines, books). As I stressed about the upcoming surgery, I tried to treat myself. I ordered a couple pairs of pajamas since I am one of those girls who updates her pajamas once every 20 years or so, whether she needs to or not. I promised myself a manicure/pedicure after surgery since my nails can't have anything on them going into surgery. I looked at my scuffed Fitbit band and watchband and decided I could splurge there, too. I also cleaned house – for me.
I have decided that either I lack imagination when it comes to self-care or maybe there just isn't much that can really comfort me through the first, longest and most definitive operation of this process. It felt like it approached me like a train going 80 miles per hour, and I had voluntarily tied myself to the train tracks. I trusted my team, and I was probably as ready as I could hope to feel. Just because something is the right choice doesn't mean there won't be conflicting and difficult feelings about that choice.
The post-operative pain lasts longer and is stronger than expected. I was in the hospital for three nights and simultaneously remember both being very "out of it" and very much in pain. Pain relief, for me, has always been complicated by the fact that most narcotic pain medications make me sick to my stomach. Still, I do not feel my pain was well-managed at the hospital or afterwards. Sometimes we just get to go through it. I try to save my crying for in private. I feel very grateful for the awesome family and friends in my life and I am desperate for a life that looks "normal" again - a life that might include warm showers, less pain and no more dreaded drain tubes. I try to be kind to myself while I wait.
Distraction is often my best tool and includes falling asleep and binge-watching a gentle mindless television series, stretching out on the bed far enough to touch my wonderful dog who has been with me through so much of this, as well as anti-anxiety medication as needed. I also wrote in my journal and reached out to the people in my life via email. I am in no shape for company at this point and I am grateful that friends and family understand that. I go hangout in the mastectomy support groups online. So often, for cancer survivors, it boils down to two desires:the strong craving to not go through cancer alone and a wish to get back to some sort of normalcy in our lives. Once more, I feel this way.