Several people have checked-in recently to ask how I’ve doing, so I thought I’d reclaim “PinkTober” and share an update. Why am I sharing this post on my professional website? Because cancer doesn’t differentiate between professional and personal life spaces, and I’d like to normalize talking about (work) life with cancer. Skim or read closely, as resonates with you.
First, an important disclaimer: 1 in 8 women will battle breast cancer, but each experience is unique. At each stage of my treatment, I searched library databases and the wider World Wide Web for insight on what to expect; some aspects of others’ narratives resonated, but I quickly learned that my experience could veer left when others’ experiences veered right. Nevertheless, I’ve shared my experience at the end of this post, in case it helps others anticipate what they might encounter.
Second, I use the word “survivor” throughout this post, but it’s not a term that resonates with me – at least not yet. I use it because I haven’t identified a viable alternative, and cancer patients who are undergoing or have “completed” treatment often are almost immediately termed “survivors.” Just know it doesn’t jive with all of us for varied reasons…
October has been challenging because I’m barely two months past my own experience with primary treatments, I haven’t yet had follow-up scans, and I’m encountering daily reminders about breast cancer – many of which seem like marketing ploys, rather than genuine efforts to support survivors and research. I finished my primary treatment in August but will continue hormone-therapy for five to ten years. If pink October reminds you to get your annual mammogram or encourages you to donate directly to cancer research, great! The commercialization of the month, though, is anxiety-provoking for me.
That disclaimer noted… if this month has you thinking about how to support breast cancer survivors in your life, here are some tips.
Ways to Help a Survivor in Your Life
- Invite them to go for a walk in nature. Spending time in nature can be therapeutic, and I have appreciated opportunities to reflect or meditate amidst the trees, earth, and open air.
- Invite them to attend a strength-training class with you. Granted, the medical profession doesn’t always agree about when to resume strength training, but I found strength-based exercises energizing each time I was allowed to resume them.
- Go shopping with them – or for them. My wardrobe needs have shifted multiple times during my experience. After surgeries, I needed button-up shirts that I didn’t have to pull over my head. During radiation, I needed soft, comfortable tops that I didn’t care if they got stained by lotion or Aquaphor, even as I was trying to dress professionally for work. Now, I still need to rework parts of my wardrobe – but don’t yet know what’s going to be comfortable. (Nerves are awesome in their regenerating capacity, but they take time to do so.) Rough seams continue to be an enemy. Currently, COVID-19 also complicates shopping… Cancer patients are among those at higher risk for severe symptoms, and during active treatment, an exposure or positive diagnosis could have delayed treatment, so I spent the first nine months of 2022 in a very small family/friend bubble, with very limited in-person shopping. I’m not great at asking for help, and I didn’t always know what to ask for… But among the most comforting gifts I’ve received during this experience were a heavenly soft, comfortable wrap and an array of tops that accounted for my needs at different stages of treatment.
- Other notes and gifts also are appreciated. Among my favorites: Cards that made me laugh, beautiful plants, books with strong heroines, fun cocktail napkins, and a beautiful bracelet, but it’s really about the gesture… I’m a fairly private person, and it took me a while to share my news beyond family members, close friends, and supervisors who needed to be involved in contingency plans. Every expression of support as I shared more broadly was like a boost of energy.
- Invite them to have a drink (of whatever variety they prefer) with you. Don’t judge. The science isn’t conclusive, and though I abstained for significant portions of my treatment, sometimes a glass or pint is very therapeutic.
- Offer to drive them to an appointment. Although I rarely took friends and family up on the offer, I greatly appreciated knowing they were willing to lend that support if I needed it.
- Read their mood. I’m forever grateful for the friend who sensed when I needed to joke about what could possibly be left after a third surgery. She would have consoled me if I needed to cry, but in the moment, I needed to laugh, and she honored that.
Things to Avoid
- Don’t make assumptions about what survivors can/can’t do. I worked throughout treatment, thanks to the support of colleagues who covered my classes on surgery days or stepped in to offer continuity during radiation treatments. I didn’t do it solo, and I would have had to take time off if my third surgery hadn’t been “successful,” but I craved my routine and the intellectual rigor of my job during my treatments. That’s not true for everyone, though, so I’ll always ask survivors what they need, rather than making assumptions based on my – or other’s – experience(s).
- Don’t assume survivors will bounce back immediately. Cumulative primary treatments – and ongoing secondary treatments – can lead to substantial fatigue. Although I worked through most of treatment, by the end of radiation therapy, I was exhausted. Radiation therapy damages healthy cells, even as it attacks cancer cells, so the healthy cells need time/energy to recover. Life doesn’t instantly return to normal when primary treatment ends.
- Don’t say “At least you had cancer when X happened…” or “At least X happened when you had cancer…” Just don’t… This one’s sneaky because you might not realize you’re saying: at least you weren’t considered for… while you had cancer… Or at least you had an “out” when we were dealing with.. Cancer is already disrupting our lives. It’s not an excuse, and we already feel like we’re missing out on meaningful experiences. So just don’t….
- Don’t say “You’re so resilient / strong.” Survivors don’t want to have to be…
As promised, here’s what my experience entailed:
- In December 2021, my annual mammogram identified architectural distortion, which triggered a follow-up, diagnostic mammogram, which led to a biopsy (ouch). My cancer was not palpable; it wouldn’t have been discovered without routine screening mammographs. So, again, if you associate October with getting an annual mammogram, please continue that trend!
- My awesome OB-GYN (who I met through a previous health challenge that I’ve also disclosed in disciplinary spaces)referred me to Duke Cancer Center. He specifically referred me to a respected surgeon, but that referral also enabled me to connect with a radiation oncologist who is an exceptional patient educator. She also happens to have a Wyoming connection and graduated from the same high school as my mom (though from a different school building and closer to the year I graduated from H.S.). My first introduction to her was via an archived video of an October 2021 panel on “What’s Best for Breasts.” (Okay, October is good for breast cancer education…) There was a significant gap (while I was co-teaching Elon’s January-term…) between my biopsy diagnosis and my first appointment at Duke, so I was in learn-all-I-can mode, conducting a very personal literature review. As an educator and a patient, I appreciated her clear explanations and wished she’d been given more time to teach and answer questions during the event.
- That trend continued when I met with her (my radiation oncologist) and my surgeon in early February. (Some patients also meet their medical oncologist in that initial meeting.) I still have a sketch she drew, illustrating the parameters of my specific type of breast cancer.
- In February, as we tried to assess the scope of the cancer, I had additional diagnostic procedures: an MRI, two MRI-guided biopsies (double ouch), an ultrasound, and an aborted ultrasound-guided biopsy. (Feel free to DM me if you’re facing any of those procedures and would like to know more about the potential experience.)
- My initial treatment plan was to have a lumpectomy, followed by radiation and hormone therapy.
- My actual treatment plan evolved to a lumpectomy, followed by two re-excisions, followed by radiation therapy and hormone therapy. The initial surgery (March) and the subsequent re-excisions (April and May; prompted by close margins and then additional cancer cells in the margins) meant I had three months with activity restrictions – including restrictions on activities that I normally use for stress relief. Tommy Rivs’ iFit Road to Recovery series was a timely way to facilitate walking, but I had to take extended breaks from the running and rowing activities that normally facilitated both physical and mental well-being.
- The re-excisions were a blow to my psyche and, partially, my plans to work through treatment. Supportive colleagues covered a class day for the initial surgery, but I also had to miss a significant event with my students after the third surgery. I kept making and adapting contingency plans. Fortunately, I had supportive supervisors and colleagues. [It feels risky to disclose this information… I used 96 hours – 12 days – of sick leave for diagnostic and treatment procedures and recovery over eight months… In hindsight, I’d advocate using more, but I felt like I was balancing personal needs and professional contexts that can’t be easily summarized in a blog post.]
- Three surgeries meant I needed a longer recovery period before I could start radiation therapy… As a result, radiation therapy started during a week I wanted to be very present for work responsibilities. I’m grateful that a colleague (Caroline Ketcham – Thank you, friend!) stepped in to offer support, enabling me to be two places at once – in treatment for breast cancer and on-site (if more limited than preferred hours) for the first year of a new Center for Engaged Learning research seminar.
- Radiation therapy requires a lot of mindfulness… I had to practice “inspirational deep breathing” (why “inspirational”?!? what a misnomer!) to protect my heart. During most treatments, I could focus on an image of the Duke Gardens to help stay present in the moment and focus on my breathing. (I also often walked through part of the gardens before or after treatment.) In week 2, the Tan machine went down, and I was rescheduled for the Green machine. I created the image below as a way to process my stress about not having anything to focus on in the Green treatment room; there was a sky/star-scape directly above the treatment table in the Green room, but nothing to look at when you turned your head to the left, as my treatment required…
- After the Tan/Green machine hiccup, my treatments generally were uneventful. I had skin reactions to radiation stickers and dealt with radiation-induced rashes, but radiation therapy mostly offered consistency: I started every week day at Duke, for four weeks in a row, and one day a week, I met with my radiation oncologist.
And then (primary) treatment was finished… Two weeks after radiation, I started a hormone therapy that I’ll continue for 5 to 10 year, and it has absurd side-effects… But the big guns that most people associate with cancer are behind me.
My next screenings will be in December, and I’m a bit anxious about moving through that first confirmation of my treatment plan’s success (or complications), so thanks in advance for your patience and continued support.
In the meantime, if you’re facing your own breast cancer journey, I’m sending positive energy, and I’m happy to talk.
Thank you to every one who’s supported me – and to everyone supporting other survivors in their lives. Your time and care matters – and helps (immeasurably) – as we navigate our journeys.