The Frames We Choose: Cancer, Connection, and Personal Stories
I recently saw the play Here There Are Blueberries. The play is based on a true story of a photo album featuring Nazi-era photographs that arrived at the desk of an archivist at the US Holocaust Museum in 2007. A central question to the play is what choices you make when you take and preserve a photo.
But this question is also pertinent to our story – What do we crop out of the frame and keep private? What do we include in the frame to share with others?
When I talk about my experience with breast cancer, I am constantly editing my story. My closest confidantes hear the darkest jokes and the realest truths. They are the people who know that the length of my hair does not tell the true story of the quality of my life after treatment.
- Call Sharsheret early and often. The care packages, support from social workers and peers, genetic counseling, and kits for the children in your life are all indispensable.
- Take a wide mouth, insulated water bottle with you to the infusion center, because they will only offer you water in dixie cups.
- Tell your friends exactly what type of food you want in the meal train. You don’t want to face a fridge full of rotting lasagnas if lasagna isn’t your love language.
- You never have to go to an MRI, CT scan or PET scan sober. A prescription of Ativan can be very helpful if you don’t want to spend an hour crying in a magnetic tube.
- You can bring a friend to the scary appointments, and they will take notes, hold your hand, or verify if your anxiety meds have kicked in or if you should take a second Ativan. Oh, I shouldn’t take a second one? Are you sure?
I tried to keep up with thank you notes. I made custom stickers and enamel pins. The stickers were of the Tasmanian Devil in a tornado of pink ribbons. I can’t tell you how much Taz in a pink ribbon tornado made me laugh and how much affection I have for something that started as a joke.
The enamel pins said, “Today’s Hospital Husband,” (and it may or may not have said #FCANCER on the back) and I awarded them to friends who drove me to appointments, brought food, or cleaned the litter boxes on my back porch. As a single woman, any man who goes with you to an appointment is upgraded to husband by staff – because they simply can’t imagine any other reason he would be there. The women in my life were never assumed to be my wife, so Hospital Husband became a gender-neutral celebration of friends helping friends.
When I think about active cancer treatment, I remember lots of strangely fun times. My friend Ronnie and I went to a movie matinee every week for Steroid Saturday. It was the day I had the most energy, thank you steroids, and we would find an empty restaurant and an empty matinee for a private screening of a second run film. My friend Jocelyn and I started a podcast about candy, because talking about candy and tasting candy is the perfect antidote to thinking about cancer. Our candy podcast is also a strange time capsule of how chemotherapy changed my taste buds, especially on sour and spicy candies.
The stories I crop out of the frame are receiving my diagnosis on Zoom and then driving to my friend Lucy’s funeral in Michigan after she faced her own breast cancer journey. I only got my mammogram so I could go to her funeral with a clean bill of health; instead I had the same diagnosis that took her from her family when she was only 42. I promised not to tell anyone at the funeral about my diagnosis, but sobbed so hard I couldn’t keep it a secret. Thank you for getting me an early diagnosis, Lucy. You saved my life.
I crop out what it was like to drive from Michigan to New York to meet up with my dad to do art stuff. Every day in New York, I had plans with friends… two of whom lost their moms to cancer. I yelled at my friend Shalvi across a Pac-Man console that I had news. I whispered to Patty in a wine bar. I have breast cancer, please don’t worry.
I started blogging in 2003, so telling my stories publicly is second nature. I talked openly about my conversion to Judaism in my 20s, my hysterectomy at 40, and my breast cancer and subsequent sarcoidosis diagnosis today. I don’t require anyone to talk publicly about their cancer, but I know that Lucy saved my life by talking about hers and that a number of my friends have received clean bills of health after my diagnosis sent them to their first mammogram appointment..
Sharsheret provides a safe place for conversations about breast and ovarian cancer. It is so tempting and easy to hide the darkest days away from those who love us, but Sharsheret provides support for mental health struggles that Instagram wants us to crop out of the picture. Whether the conversations are private or public, talking about our cancers helps all of us by providing a soft place to land when the story is so difficult that we’d rather not take the photo at all.
When I was diagnosed, I emailed the Sharsheret staff and told them that I needed to press pause on volunteering and that I would need support as I headed into the unknown. The staff told me it wasn’t uncommon for a volunteer to become a client and then, G-d willing, return to volunteering after treatment. And as I’ve struggled to regain my strength and health over the last two years, the local team has made sure that I know that the door for support isn’t closed just because my hair grew back.
If you do one thing tomorrow, please let it be scheduling your next recommended cancer screening.