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It’s been nine months since I was diagnosed, and when I think about it, I should not have been surprised as there were tangible signs. I was the one who found the lump in my breast. I learned that I had to be my own advocate to get the first ultrasound as I was told that it was likely a lymph node and to come back in three months (they would contact me). I continued to monitor and still felt the lump so I scheduled another ultrasound. This time I was told it could be a lymph node but that it wasn’t getting any smaller.
My options were to have a biopsy or wait and have another ultrasound in three months. I couldn’t imagine why anyone would wait another three months and worry about whether it was something or nothing and guess how much it was growing or shrinking by feeling it every day, so I asked the technician about it and he said many women never return for retesting when they have every reason to and choose to hold off as long as they can. I would not advise this course of action for anyone, and I'm glad I didn't wait because my something didn't turn out to be nothing.
The comments I remember during my biopsy were “the lump is very superficial,” and as I was departing “I think you are going to hear good news.” So when the call came, I didn’t think that I needed to call back right away. I returned the call and remember being told that the results indicated cancer. I was quite shocked. I don’t remember much of what was said but recall the nurse navigator telling me not to worry and that she would send an email with the details. I immediately felt connected to her and was thinking what a tough job that must be, calling people and sharing news of a cancer diagnosis.
She scheduled me for a series of appointments with the physicians, two weeks later. The time between the call and the appointments was pretty terrible. I experienced a roller coaster of emotions. I was sad, scared, overwhelmed, mad, worried, frustrated, anxious, etc. It was hard not to think about the many people in my life I had lost to cancer, about the events I missed with family and friends because I was devoted to my career, about the trip I really wanted to take abroad all while not knowing what the future held. It was so strange because I physically felt fine but too often I drifted into thoughts of the worst case scenario.
When I arrived at my appointment, I got to meet the nurse navigator in person. She explained what was about to happen. I felt like I was in a movie. It felt like there were lots of talking heads who were speaking a foreign language. I struggled to process information. I am so fortunate to have an amazing partner. And I am so lucky to have connections to health care experts who helped even before my appointments. I was armed with a list of questions but still found it hard to process what was shared. I didn’t know that it wouldn’t be black and white, that I would have decisions to make about surgery (single or double?) and next steps (reconstruction or stay flat?). Never have I talked about boobs so much.
I needed support, and thankfully I am surrounded by the love of family and friends. I took things one day at a time and put one foot in front of the other. It continued to feel like I was in a movie, that I had a big secret that no one knew. I was waiting for more information before I told colleagues. I decided to have a single mastectomy and maybe reconstruction. I will never forget the morning of my surgery, and arriving at the hospital before many of the lights were turned on. I was first in line, but not a line I ever wanted to be in. After checking in I moved to the waiting room, and wondered what everyone else was doing there. My name was called: it was time. I cried. I remember the nurse asking “Did you get any sleep last night?” HA! I soon discovered that I had an angel, one of my pre-op nurses was a survivor herself. I will never forget that. She got me through the morning and gave me hope.
Everyone’s journey is unique. My perspective is not reflective of anyone else's. I felt very far away from my family. Telling people was hard. I cried a lot and remember starting the conversation with “I have some bad news.” It was hard to get the words out. I wanted to tell people in person or on the phone, but it became too exhausting. After several conversations, I resorted to emails and texts. That seemed easier to me and also seemed easier on the recipient as they didn’t have to react immediately. People don’t know what to say. I think it is okay to say that you have no words or that it sucks, because it does. It was hard for me to hear “everything is going to be okay” because it certainly didn’t feel that way. But there is no manual or guidebook. I remember people expressing their love and support, whatever I needed. Even now having been diagnosed and treated, I don’t have words when I hear about another woman’s diagnosis.
Again, while there is no manual or guidebook, I do think that it’s important to acknowledge it to the person with cancer. It was nice when people told me I didn’t have to respond to calls, emails, and texts. I appreciate how much love and support my family and friends gave to my husband as I certainly didn’t have the capacity to be supportive. I had a family friend who was an oncology nurse, and she helped make everything more digestible. I had friends and family members who connected me with survivors. It was very helpful to talk to people who had been through it. That gave me hope. Before my surgery, my goal was to just make it through the surgery. Then I would try to read and connect with survivors or a support group. As many survivors say “welcome to the club, it’s a club you never wanted to join.” I am so grateful for club members who gave and continue to give me hope. I will never forget Cary’s response when I emailed about getting a discount for survivors . . . in the midst of the darkness, there was light.
I know that people want to do something, anything to help. We had so many offers for meal delivery, but I had no appetite. Again, everyone is different and has different needs. It's possible people need rides to and from appointments, or help with childcare. Personally, I loved receiving notes and cards in the mail. I had so many thoughtful gifts on top of an entire team of people who donated time and money to Relay for Life. My advice is to be authentic, do what feels right, and make sure it comes from the heart.
I now wake up every day thinking how grateful I am to have another day. While not life changing, I am even more aware of the gift of life. And while I already knew it, it was such a reminder of how blessed I am to have such an amazing family and network of friends. I am more intentional about where I spend my time. No longer do I work 60+ hour weeks. I have spent lots of time in the beauty of Portland and the state of Oregon with people I love.
Right now I am still debating whether to reconstruct or not. . . I don’t know that it’s for me. I have been wearing the Handful pads. They are great and so comfortable. Thank you Handful!
I have plans to get busy living! Not to be cliché, but I will make the most of every day. I will celebrate milestones with my loved ones. I will proudly wear my Handful bra when I run another half marathon. And I will wear it when I travel abroad and when I hike in Forest Park. I've got plans!
Seize life Amy. Make yourself a priority. Appreciate small beauties and take advantage of life experiences as they present themselves. Take time to heal!!! Prayers for health from a fellow survivor.
Amy-thanks for sharing your story. It’s so important to listen to that little voice inside your head that says something isn’t quite right. You’re an inspiration! ❤️
Thank you for sharing your story as I greatly appreciate your valuable reminder to get more & more information ASAP (versus waiting as the choices might not be the same). Thank you for being a badass inspiration & rocking Handful! Much love 💕
Amy – Thank you for offering up your experience and your perspective. I love how you relay that everyone’s experience is unique – it certainly isn’t one size fits all. And you have personally motivated ME to call and follow up on something that has been bothering me despite my last month “clean mammogram” with the follow on note “you have dense breasts”….I mean WHY BOTHER with a mammo with DENSE breasts? I’m bothered. THANK YOU!
Thank you Amy for ditching your head covering and taking these photos in your Handful bra, wispy new post chemo baby bird hairs and all! I can’t wait to cheer for you as you get back into the swing of training. Long power walks are still great, so don’t rush it listen to your body. I’m ready to walk from the Handful office across the Tilikum Crossing with you again any day!