Week 12: My Mastectomy Experience, Part 2
Relief, recovery and the power of storytelling
Good Morning and Happy Pizza Friday,
One thing I know for sure…storytelling connects people. When we speak from the heart about our personal experiences we build deep connections and give others permission to do the same. And yet, I have been feeling overwhelmed and overstimulated by the constant firehose of information, images and stories we are exposed to and wondering about my place in it all and if there’s any point in adding to the chorus for others. While I don’t have a fix, I know that when I feel this way, it helps to focus on the little things. It helps to focus on what I can do and what feels right to me. I have an innate desire to continue telling my story - just for me - and yet when I do, the connections I make are remarkable. I may not be solving our world or journalistic problems with it, but I’m connecting with people and for me, that’s more than worthy.
A friend recently told me “Joy is resistance”, and while I agree, I would like to offer that “Storytelling is resistance” too.
I’m going to continue with part 2 of sharing my recovery story from my double mastectomy last year. I hope this introduction gives you pause to think about what you can do to take care of yourself, and your piece of the world. What branches can you extend to open yourself up to connection and community?
“Hi sweetie, I’m your nurse, my name is Alison,” I heard as a gentle handle was placed on my head and I blinked my eyes open.
“Great name” I replied with a smile. “Where’s James?”
“You’re still in the operating room sweetie, we’re taking you to recovery now”.
I shut my eyes again and went back to sleep.
When I opened them up again, my wonderful James was at my bedside. I’ll never forget his face on the edge of the bed, the love emitted from his big eyes and what seemed like every pore. I started giggling because there’s something about his gentle face that makes me laugh. I looked around my makeshift room with the curtains drawn around us and I looked down at my chest. The moment I had so feared… would I regret my decision? Would I be horrified? I breathed a ginormous sigh of relief.
I was okay. I made it.
My surgical bra and bandages covered the worst of it but from my vantage point looking down, I realized, I’m still me.
I did the hard thing and it was all alright.
I tried to lift my arm to scratch my suddenly extremely itchy nose and my hand didn’t make it past my waist. It felt as heavy as an ox. As James proceeded to scratch the itch on my behalf, we chuckled about how I was just like our dog, Rigby, enjoying a good scratch of my snout.
My assigned nurse, Alison, returned with some fresh ice packs for my bra and lit up the room with the sound of her voice and her bubbly energy. She was positively joyous. Nurses, especially the really good ones, are angels sent from heaven. Alison made such a difference to me in these fragile moments. She met my relief and sense of peace with humor and encouragement and care.
Apparently a few hours passed since the surgery, most of which I spent sleeping off the cocktail of anesthesia and Alison eventually informed us we could prepare to leave. Donning a zip-up sweater and my trusty mastectomy pillow wrapped around my chest, I was wheeled to a waiting uber. It was dark once again and as James told the driver to take it very slow and steady and I thought about the ride to the hospital just 12 hours earlier.
Unfortunately for the kind and concerned uber driver, I burst into tears. I’m not sure I have ever cried harder. After getting assurances from me, James told the driver it was okay, it was nothing he did or the driving. I just needed to get it out. And that I did.
Our whole way home, I wailed. I cried a river. Three months of anxious questions, waiting, wondering, worst case scenario’s playing in my mind, came out in crocodile tears. 20 years of fear for breast cancer, of grief for the innocence of life before breast cancer, poured out. Worry for my Mom, worry for myself. All the worrying and it had gone okay. I was so proud of myself. It felt so good. Though, I’m not sure our driver thought so.
James helped me inside our apartment and Rigby instantly knew to temper his excitement and meet me on the couch to offer me his paw and many gentle licks.
I Face-timed my parents (who had been hanging on every update from James all day) and told them “I did it.” I also told them what I have previously shared… “It was one of the best days of my life.” Only my parents can express such an enthusiastic sigh of relief and laughter in one single moment, “We’re so proud of you.”
When I speak with women now who are about to go through this, I tell them about the feeling of relief. I tell them that I was so scared to wake up and have an immediate feeling of being “changed” and no longer “me”. While this entire experience did change me, both physically and mentally, it wasn’t felt the moment I woke up from surgery. In the aftermath of surgery, all I felt was peace.
The question of “will I be okay?” had an answer.
Just getting to this part in the process was a huge accomplishment. Healing would come. Rest would come. Strength would eventually come. It would prove to be an arduous non-linear process but the first biggest hurdle had been overcome. And in the days post surgery, I let myself bask in that fact. Even if I couldn’t lift my arms to scratch my own nose.
When I woke up in the morning, I opened instagram and saw a DM from a woman named Sally in Kansas City. She told me she had watched my story unfold and that she too had early stage breast cancer. In fact, she was on her way the way to the hospital for her double mastectomy in that very moment. I wrote her back instantly…
“Hello, from the other side”
I told her it was going to be okay. I told her I was very tired and sore, but calm and happy. She said it meant so much to her. Hours later, I received a photo I can picture in my minds eye as clear as day. Sally’s beautiful smile in her hospital recovery room with the words “I did it”. As the days and weeks went on, Sally and I would check in on each other, just a day a part in our recoveries. It was incredibly sweet and helpful and represented so much to me - telling my story had a real life consequence, a real life friendship.
And now, a year later, with all of you - the consequences of my storytelling.
Thank you for letting me share my story.
With love and glimmers,
Alison
P.S. While I am not an influencer and I intentionally don’t share links publicly, I am often asked about the supplies that helped me with this stage of recovery, from friends and family or women going through this themselves. I think it could be helpful to have this list all in one place on the internet and easy to refer to this post so here it goes (without links - all easily google-able)
Button-front pajamas
Drain tank tops
Zip front, long sports bras
Mastectomy pillow (I had two)
Slippers, cozy socks, a solid button or zip front sweater, a luxurious blanket
A basket for your medical supplies with a nice notebook to write down medications and drain output
Many pillows to create a wedge or sleep half upright.
Body wipes, dry shampoo and a blowout gift card (only if chemo hasn’t been involved at this stage).
“Take good care”
I love this. Now rethinking the day of my mastectomy as a good day <3
I can’t image the worry, questions and anxiety that was running through your mind leading up to the day. Thank YOU for sharing your story and for being a resource and inspiring to so many!