By Amanda DeGiorgi
Menopause, arthritis, wigs, medical bills, less sex, no sex… sounds more like a retiree’s worst nightmare than my reality as a 29-year-old about to be married. But life rarely goes as planned, and it can take you on a wild ride when you’re least expecting it.
Now that surgery, chemotherapy, radiation, and two years of medically induced menopause are in my rearview mirror (can’t hit that gas pedal hard enough!), I’ve been thinking a lot about what helped me get through the most challenging period of my life so far, what sustains me, and what helps me thrive.
Despite a very rocky road, I finally found myself and a sense of peace in the world, neither of which I had before cancer. I am thriving and enjoying a place I hope all breast cancer survivors can get to.
While I will continue working on myself and my joy, I want to share what’s helped me along the way. I met so many incredible women on my cancer journey who, like me, are lucky enough to be “out of the woods” or have been given a little extra time on this planet. Still, these women also tend to suffer in silence over things that may not qualify as life threatening, yet still have a huge impact on their quality of life.
I’ll start with the good stuff: sex. More broadly, sexual health; it’s about you first, then it’s about you and your partner (or partners).
My world of sex changed when I started injecting myself with hormones to create what felt like grapefruit-sized ovaries and harvest some healthy eggs before chemo. If that wasn’t excitement enough, having a total stranger probe me every couple of days made me rethink getting naked. I also struggled with my new breast, body image, and trust in my own body. Physical and libido changes from the endocrine medications didn’t help either.
So I got help. First, I put aside my embarrassment and was honest with my social worker. Then I found out about Sharon Bober, PhD, a psychologist specializing in sexual health at Dana-Farber. Through workshops, one-on-one meetings, and clinical studies, Dr. Bober taught me more than I’ve ever known about the vagina and, more importantly, how to take care of those special parts during and after cancer treatment. She also referred me to a pelvic floor physical therapist and gave me a copy of Sexuality for the Woman with Cancer; I recommend it to every woman who has gone through cancer treatment.
Sexual health is my biggest challenge, but with help, I’ve made progress.
Coping with physical changes
Visible markers of the cancer experience are physical changes like hair loss, surgical scars and reconstruction, weight gain or loss, aches and pains, neuropathy, or even lymphedema. For some reason, the number one response from concerned friends when you mention chemo is, “But you have such beautiful hair!” — which is really only the tip of the iceberg. Many women do lose hair (as I did), which can exacerbate feelings of vulnerability and unfamiliarity, but the bottom line is that during and after treatment, you often look and feel different.
I was very active before cancer; after chemo, I spent days on the couch and celebrated a walk around the block. Luckily, resources abound for these issues — your oncologist or social worker can help you find occupational and physical therapists, nutritionists, self-care and beauty programs, exercise classes, and wig and clothing stores.
Be honest with where you’re at physically, give yourself compassion, and start small. I was so hard on myself for not doing more and progressing faster, but that kind of thinking only made things worse. I eventually found what worked for me, and two years after diagnosis am proud of where I am today: almost free of arthritis.
I fancied myself a mentally strong person. Then I met cancer, who introduced me to post-traumatic stress, depression, anxiety, and sleep deprivation. I could write a book on this topic alone, but for purposes of brevity, the key takeaways are that you’re not alone and to not give up.
My mental health journey since diagnosis includes three social workers, a psychiatrist, anti-depressants, a therapist, a SoulMates mentor, the mind-body resilience class at the Leonard P. Zakim Center for Integrative Therapies and Healthy Living, books, and continued mindfulness work of my own. I felt, and continue to feel, pressure as a cancer patient and survivor to project the image of a strong, positive, happy person. I learned that it’s completely healthy to need or want a space (or many spaces!) to be with my mind and body and whatever challenges exist, and to eventually be guided through to a better me.
If any of this sounds familiar and you’re struggling with something, talk to your oncologist and social worker about what options are available and what will work for you, your needs, and your budget or insurance plan. If you don’t have a social worker, ask for one! Keep in mind that it may not be a perfect fit on the first try. Dana-Farber’s Young and Strong Program for Young Women with Breast Cancer and/or the Adult Survivorship Program can help you find a social worker or therapist if you’re a patient at Dana-Farber.
Please know that, even on the loneliest of days, you’re never alone — there is an entire community of us young women, and support is always one call away.