I’m sitting down to write an update for you about my cancer “hullabahoo” over the past 6 months, and I feel a long post coming on. So, in case you don’t make it to the end, here are the key takeaways:
- In honor breast cancer awareness month, the We Can Do Hard Things Podcast did an AMAZING episode (watch here or listen here) on risk factors, screenings, breast density, the works. AND a surprise: you will find some of my own story in this episode around Minute 26 and 1:02! I’m beside myself with gratitude for Amanda Doyle and Dr. Lucy De La Cruz.
- Know someone undergoing cancer treatment? Tell them about – or nominate them for – Sail Beyond Cancer! I did it with my family, and it was a wonderful experience.
- Community matters. SO much. Big love to everyone who sponsored my Making Strides Breast Cancer Walk.
- A tribute to my dear friend Mona, whom breast cancer took from us much too young.
The Hullabahoo That Comes with a Cancer Diagnosis
Last week, in honor of breast cancer awareness month, the We Can Do Hard Things (WCDHT) Podcast released an *incredibly* informative episode (watch here or listen here) talking all about what the hosts called Amanda Doyle’s “hullabahoo” with breast cancer. In conversation with Glennon Doyle and Abby Wambach, Amanda took us back in time 18 months to her own diagnosis. And she interviewed Dr. Lucy De La Cruz, her (and, serendipitously my) breast surgeon.
The first thing I want to say is PLEASE PLEASE PLEASE watch or listen to this episode in its entirety. Amanda and Dr. DLC (as we affectionately call her) speak incredibly clearly about breast cancer issues (including breast density), and this episode could, quite literally, save your life or the life of someone you love.
The second thing I want to express is my gratitude to Amanda. If you’ve been following along in the Mindful Return community this year, you know I’ve had my own hullabahoo with breast cancer. (My “Ask Me Anything” post is here.) I got diagnosed in early April and went to the WCDHT book tour in Virginia the week before my double-mastectomy. During audience Q&A I was able to come to the mic to ask Amanda about her breast cancer experience, and she jumped down from the stage to hug me. After the event, we discovered we had the same surgical team. Then, serendipitously, we ran into each other in an empty waiting room back at Medstar Georgetown University Hospital at my first post-op appointment. The connection felt like a larger force was involved.
Over the past 6 months, I’ve gone from recovering at home in a medical recliner, to taking walks around the block, to going to PT and scar massages. For a while, I went twice a week to a physical therapist at Georgetown, whose specialty is breast cancer recovery. The word *amazing* is an understatement for the care and skill of a certain therapist named Monae Dupliess. Thanks to her, I’m back to being able to stand up straight, sleep on my side, lift weights, do planks, hike mountains, and generally feel 93% back to my normal self. I’ve now been “downgraded” to going to PT once every two weeks, and that feels like a milestone.
I’ve also taken the care of my mental health seriously throughout this ordeal. Through the wonderful social work team at Betty Lou Ourisman Breast Health Center, I was connected to Kimberly Davis, PhD, and started to see her back in May. Dr. Davis is part of Medstar’s Psychology team and is a Research Assistant Professor of Oncology and Psychology at Georgetown, which is the perfect combination of expertise for a cancer patient. Dr. Davis has been such a steadying force for me since my diagnosis. And I’m grateful for all of the coordinated care MedStar has been able to provide.
Sail Beyond Cancer
I’ve heard the breast cancer survivor community referred to this past year as the “1 in 8 club” and also as “the worst club with the best members.” That description couldn’t be more spot on. I’ve been on this cancer journey with a friend of mine named Amy, who also got diagnosed earlier this year…and whom I’ve known long before breast cancer came into our lives. My friend has been a lifeline.
Right off the bat, she connected me to an amazing group called DMV Breasties (a local subgroup of The Breasties) that was my TRIBE through this ordeal. They gave me supplies, and advice, and someone even brought me homemade banana bread for the morning I got home from surgery. I’ve tried to pay it back by passing along all the gear and answering any questions that come in related to DIEP flap surgery.
The second amazing resource Amy connected me to was a non-profit called Sail Beyond Cancer. This incredible organization takes cancer patients – and their families and friends – out on a 3-hour “respite sail,” just to get away from it all. Our family went to Annapolis at the end of September and went on a gorgeous sail on the Chesapeake with Captain John, his wife, and a wonderful volunteer named Abby. The crew took such amazing care of us and insisted that I be the first to get to steer the boat. (If you’re a parent, you know that getting to be the first to do something cool is a rare feat when kids are involved.) I *highly* recommend sharing this resource with anyone you know who needs a joyful cancer escape.
Then the intertwining of worlds continued. I stepped off the boat in Annapolis only to find on my phone a text from Amanda Doyle, which she had sent while I was out on the water. She was asking how I felt about including a little bit about how my story (as a member of the “Pod Squad” – i.e. someone who listens to the WCDHT Podcast) intersected with hers and with Dr. DLC. And how I felt about sharing a few of the photos on an episode of the podcast.
With Amanda’s well-known kindness, she said there was, of course, no pressure to share these intimate details and not to hesitate to say no. But let me tell you, this request was a full body YES. I’ve been very intentional about being public about my own story, as I know this is a topic that needs more talking about. So many of us need more than just a mammogram, and we need to know what to ask for!!!
I didn’t know the date the episode would be released, but last week, I was at an early PT appointment at Georgetown Hospital, when I got a very excited e-mail from a Mindful Return alum who had just spotted my name in the episode description. When the episode got posted on Instagram and I left a comment, Amanda responded with, “Y’all, this is OUR LORI!!!”
I mean, I can’t even.
In a year that’s been dark, stressful, painful, and exhausting, this WCDHT connection has brought me so much joy. So much reassurance. And so much light.
Not Every Hullabahoo Has to Happen!! (AARGH!)
What drives me the most crazy is how many things that make this whole breast cancer feel like a giant hullabahoo don’t need to happen. It doesn’t have to be the case, for example, that we aren’t told our own breast density type. It shouldn’t have to be true that those of us with extremely dense breasts have to fight and advocate for additional testing. Why do so many breast cancer patients have to have two separate surgeries when they have a mastectomy and reconstruction? (Yes, it can be done all at once.) Doctors don’t have to only offer nipple-sparing procedures when their patient “appears upset.” (Listen to the episode and you’ll know what I’m referring to.) And above all, women don’t have to feel alone going through this or ashamed speaking about it.
One recent story in our DMV Breasties group made me want to jump out a window. A woman in the group was about to go in for DIEP surgery in 36 hours, when her surgeon’s office called to let her know that part of the surgery (related to nerve resensation) would not be covered by her insurance, and that she would have to pay a HUGE sum of money herself if she wanted it done. Apparently there was a mistake in a letter from Cigna (yes, I’m calling them out here), which wasn’t caught until barely two days before the surgery.
This type of thing makes me *so* angry and fired up to speak out.
In Memory of My Friend Mona
I am acutely aware that in the grand scheme of things, I am a wildly lucky human. My cancer was caught super early, before it even left my milk ducts. My pathology report showed that the tumors had tripled in size between when they were caught and when they were removed through a double mastectomy 6-weeks later. So it scares me to think what might have happened without that early detection. Ultimately, I didn’t have to do chemo. I didn’t have to have radiation. This was truly a best-case scenario situation, and I had tons of support.
I’m also acutely aware that this isn’t the story for everyone with breast cancer. In college, I became close friends with a wonderful classmate who shared a love of public policy, my exact same birthday (date, month, and year!), an addiction to watching ER, and an appreciation for good food and the arts. Mona Mahboubi went on to become a Pediatric Infectious Disease doctor. Of all places? At Medstar Georgetown University Hospital.
Mona passed away in February 2023 at the age of 43, after many years of having breast cancer. And I do feel like she is looking out for me somehow. Knowing that she walked the same halls at Georgetown that I traveled to get to my surgery brought me comfort when I arrived at the hospital at the crack of dawn on May 14. And I can’t help but think she had something to do with getting Amanda and I into an empty waiting room together.
There is now an endowed annual lecture in Mona’s memory, which I’ll be attending at Georgetown again this Friday. And you better believe this year the event will hit me differently. The photo I’m sharing here is of me, Mona, and our friend Rebecca, the day we handed in our senior theses way back in 2001.
To all of you who donated to the American Cancer Society’s Making Strides Walk I did a few weeks ago, THANK YOU. Your contributions to cancer research will make things better for the next generation of survivors. To all my friends and family who brought me food, and took me for walks, and sent blankets and candles and socks, and other wonderful things, thank you. You kept me putting one foot in front of the other this year.
And to Amanda, thank you for speaking out about your own breast cancer experience a year and a half ago, and for being so kind and supportive of me. You are a force for good in this world, and you have helped so many of us to save our own lives.
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