- Calista Ocean
Flying, floating and freefalling
Flying is learning how to throw yourself at the ground and miss."
- Douglas Adams
It’s been nine weeks since my initial diagnosis with Breast Cancer. A lot has happened since then! Pre-op procedures. Internet research. Easter. Consultations with surgeons and radiologists. Connecting with other women who are fighting or have won the fight with breast cancer. Leaving my full-time job to pursue my plans to travel. Surgery. Mother’s Day. Mild complications from surgery. And now, a couple of relatively quiet weeks before I begin radiation treatments to prevent recurrence.
I’m writing a detailed memoir about all of this, but I thought it would be fun to post a high level reflection of six things that I’ve learned over the past couple months (in no particular order):
Lesson in Freefalling: Skydiving isn’t nearly as scary as being diagnosed with Breast Cancer.
Two days after I was diagnosed, I jumped out of an airplane at 13,000 feet above the shoreline in Oceanside. My daughter and nephew fell from the open door of the plane first, and then it was my turn to swing my legs out, arch my back, and let go. I could feel my body pushing through the air during freefall. I had to focus on breathing, trying to pull air into the pressurized container of my chest. My ears ached from the cold, but I was overwhelmed by joy. I couldn’t stop smiling, despite the fact that the skin on my face was comically distorted by the high velocity wind. There were definitely a few moments where I felt my heart speed up, but my “tandem pilot” Becca was athletic and confident and calm, so even when she asked me to change my position so that she could get a line untangled, I never felt truly afraid. As the parachute opened, and we glided back to the earth below, I looked around me and was caught up in the beauty all around me. I felt happy. I felt relaxed. I felt alive.
Being diagnosed with Breast Cancer is a different kind of freefall - a parachute filled with medical decisions. It feels heavy on my back. No choice to NOT get on the plane or NOT fall out an open door. No tandem pilot strapped to me. No pretty view. I wouldn't recommend it.
Lesson in Self-Compassion: Blaming myself won’t change anything.
In the couple weeks following my diagnosis, it was easy to get caught up in the mind game of trying to figure out “why me?” What did I do (or not do) that gave me breast cancer? It didn’t feel fair and I wanted someone or something to blame, even if it was myself. It seemed like figuring out “why” would give me back some control – a way to ensure that I wouldn’t get cancer again after I got through the surgery and treatments.
For women in the U.S., the average risk of being diagnosed with Breast Cancer is 12%. I happen to be in the “1 out of 8” women who will be diagnosed at some point in their lifetime. Maybe I could have done something differently, and I wouldn’t have cancer; but there’s no way of knowing and blaming myself doesn’t change anything. However, this doesn’t mean that I can’t make changes to sustain my health and prevent recurrence. My diagnosis has given me the opportunity to learn about my body and this disease. I’m building a recovery and healing plan that includes changes in diet, exercise, meditation, and lifestyle (and a lot of music and dancing!)
I trust my body to heal and to stay healthy. My body is trusting me to stay aware and to treat it with reverence and compassion.
Lesson in Awareness: There are a lot of incredibly strong and resilient women in the world, and I’m one of them.
My grandmother is a breast cancer survivor. She's still alive and beautiful and vibrant more than two decades after she was diagnosed with Stage III cancer. I knew the surgery and chemo and radiation was hard on her, but I never asked questions or talked to her about what she was going through. I was in my mid-twenties and preoccupied with parenting and marriage and career, so I worried and cried privately and prayed that she would be okay. And she was. She survived and she thrived and she inspires me still.
Over the last decade, I also raised funds and “awareness” by walking in the Avon Walk for Breast Cancer four times. I listened to women tell their stories and felt my heart explode with both sorrow and admiration, but I never sat down with a breast cancer survivor and asked questions or looked into her eyes. I knew women were strong. I’d always known that, so the details didn’t seem important.
When I was diagnosed, I realized that I'd never raised my own level of awareness. I knew almost nothing about Breast Cancer. I knew women had lumpectomies or mastectomies, that they might need chemotherapy and/or radiation, and that at least one of those treatments meant they might lose their hair. I didn’t know anything about the various stages. I didn’t know what “invasive” meant or how the lymph nodes were (or weren’t involved). I just knew that women were fighting the disease, and many of them were winning. What else did I need to know?
Now I know a few more women who have survived breast cancer, and a couple of them who are currently undergoing treatments. Now I know more about this disease. Now I truly understand the courage and grace it takes to undergo surgery, make treatment decisions, feel shitty some days, feel truly grateful other days, and keep taking one step at a time to get back to a cancer-free existence.
With what I know now, I'm often tempted to dismiss my own fears, pain, and challenges because I’m so in awe of what others have or are going through. I know this sounds weird, but sometimes I feel guilty that I was diagnosed at such an early stage in the disease. It means that I won’t face some of the treatments that others will have to, like chemotherapy. I will resume a more “normal” life sooner than other women with more locally advanced or metastatic cancer. For this, I’m truly, truly grateful. That being said, my Stage 0 cancer has still been traumatic. It's been an incredibly awful experience that has deepened my admiration for every single woman who has been diagnosed with breast cancer – at any stage.
We are all incredibly strong and resilient. Let’s remember to sit down with each other and ask questions and share stories and look into each other’s eyes.
Lesson in Hindsight: A comfortable bra is a thing of wonder and a priceless treasure.
Strange lesson, I know, but just in case someone who has been recently diagnosed reads this, it felt worth mentioning. I wish someone had told me to buy a soft bra with no underwire and cut low on the sides, so as not to constantly irritate the fuck out of my incisions. I bought two new sports bras in the week following my surgery. It was painful and exhausting. Trying on bras – pulling them on and off carefully over two different incisions – was excruciating!
Last week, it finally occurred to me to Google ‘bras for lumpectomy’ and ‘bras for radiation’.
My new bra arrived a few days ago. I literally squealed with delight when I put it on. I was comfortable for the first time since my surgery. I didn’t take the bra off until the doctor made me remove it to wrap my torso in an Ace bandage for compression after draining two ounces of lymph fluid (a “seroma”) from my armpit. Yes – that procedure was as gross as it sounds.
I’m daydreaming about putting back on my soft, seamless, rose-colored bra. Sigh...
Lesson in Self-Respect: I have choices and I deserve to be treated with respect and dignity.
Since my diagnosis, I’ve consulted with, been treated by, and been cared for by several doctors and nurses. Most of them have been knowledgeable, clear, and caring in their communications with me. However, last week I was faced with a situation that was incredibly stressful. The pathology results from my surgery were delayed, and there was no clear communication regarding the status or the expected timeframe for their return. No one was even willing to confirm that the lab had received the breast tissue from my excision. From my perspective, the doctor, the pathologist, and the staff at my doctor’s office were detached, dismissive, and even rude and condescending at times.
Being a patient doesn’t mean “bearing provocation, annoyance, misfortune, delay, hardship, pain,etc., with fortitude and calm and without complaint, anger, or the like"; although that is the Dictionary.com definition of the adjective “patient." I actually consider myself a patient patient, until I’m not. Then I’m a Certified Pain In The Ass. Although I would have much preferred to focus on relaxing and recovering from surgery, I found myself making phone calls, sending emails, and even escalating to my insurance company to request a patient advocate to locate my pathology report. It worked. I got my results, and in the process, discovered that I wanted to minimize my contact with this specific doctor and her staff for the remainder of my medical care. This decision also helped me to make some key decisions related to my upcoming radiation treatments.
It’s also become clear to me that our modern medical system puts a lot of pressure on doctors to recommend and provide a “standard of care” that is as conservative as possible. In other words, it is better to overtreat a patient to insure that the cancer is removed and doesn’t return, than to risk a recurrence due to undertreatment. I respect this, and it also feels fear-based to me.
The cancer has been removed from my breast. Now I’m faced with decisions about various radiation options and endocrine therapy to prevent recurrence. These treatments have side effects and risks. It’s taken some time for me to understand the recommendations, weigh the risks, and make decisions that feel right for me. I’ve chosen to use a combination of medical intervention, alternative healthcare, and lifestyle changes to get rid of the cancer and reduce my risk of recurrence.
It’s my life. It’s my body. It’s my choice.
And finally…Lesson in Floating: Hot air ballooning is scarier than skydiving (but still not scarier than Breast Cancer).
Really. Not joking. I enjoyed a hot air balloon ride with my daughter last month, but spent most of the short trip white-knuckling the basket as it floated slowly over residences, fields, and freeways. The top of the basket was below my waistline, so it felt like I'd topple out if I leaned a few inches forward. I enjoyed the view, especially when we spotted a bobcat and then a coyote running through the fields below us. It was fun spending time with my daughter, and cool texting my sister who had driven directly below us on her way to a weekend event. My head got hot every time the pilot turned up the flames, but my hair never caught fire and I managed to take some cool photos with shaking hands.
Life has been a little like that this past few months. It feels like I've been floating between what I had planned and what life had planned for me. Intellectually, I understand that I'm not going to fall and I can see that there's a field to land in nearby. So I'm gripping the sides of the basket, breathing deeply, and trying to appreciate the opportunity to see the world from a different perspective.
Here's to lessons! Here's to safe landings! Here's to flying again soon!