Happy Cancerversary!
Saturday is the day. Saturday is the five-year anniversary of the bathtub that broke my back. This is a bittersweet day for me. When talking about survival statistics, science uses the day of diagnosis as the starting point. I get that, because it’s measurable. But if I’m being honest, and I have spoken with my oncologist about this and he considers this very possible, I have been living with undiagnosed breast cancer since probably 2012, maybe longer.
Five years is a big deal. The five year survival rate post-diagnosis for people with metastatic breast cancer is around 27%. Some women live for 25 years. Some live for days, or just a few months. My actual diagnosis will be in Feb, but I’ve lived at least five years now. The bathtub marks the beginning of the final stage of my diagnostic journey.
My diagnostic journey is a long one. It began when I was pregnant with my second child in 2012. At some point in my pregnancy, I was sitting by myself in the dark in the middle of the night. I don’t remember why. My oldest was 9 months old when I got pregnant, so maybe I had been up with her. I don’t know. All I remember is sitting in a dark room and telling myself, “You need to go to the doctor, and you need to keep going to the doctor until you figure this out.” I didn’t know what the “this” was, but I knew something was wrong.
I don’t know how many doctors I saw and tests I had between July 2012 when I had a threatened miscarriage, and February 2016 when I officially received my diagnosis of metastatic breast cancer. If I had to take a guess, I’d say 20 doctors and 50 tests. I saw doctors for swollen, hard lymph nodes, back pain, chest pain, shoulder pain, strange rashes, and more. Most of these doctors would tell me there was nothing wrong with me. A couple of them added the gem, “This is a waste of everyone’s time,” including a cardiologist and a nurse at my general practitioner’s office. There is not much worse than being gaslighted by medical professionals when you’re sick. I really did start to feel crazy.
October 10, 2015. My husband bought an old cast iron soaker tub and asked me to help him carry it from the road to the back porch. While we were carrying the tub, I felt my back pop. In the moment, there was no pain, but over the course of the next two months, my pain escalated and my mobility drastically decreased. After many, many appointments and tests, beginning with my general practitioner in November and ending with a medical oncologist in February, I was diagnosed with metastatic breast cancer that had spread to many lymph nodes and many places in my bones, including my left shoulder, spine and all throughout my pelvic region.
I had to begin treatment immediately, including an “abnormally large field” of my body receiving radiation treatment in an effort to stabilize my spine and get the cancer under control. I was officially diagnosed on Leap Day, 2016. It was my Leap Day of faith into a medicalized world I never wanted to be a part of, but would ultimately bring me to the place I am today, and will hopefully keep me around for much longer.
Self-breast exams are extremely important. Many women find their cancer that way. But many don’t. I did not. All of my breast issues and back pain were chalked up to pregnancy and breastfeeding issues. I went to every annual checkup, every appointment. When I was finally diagnosed, my medical oncologist and gynecologist both tried to feel the tumors in my breast (there were two). Neither could find them even knowing where they were.
I’m not telling this story to try and scare anyone, although this is very scary. I’m telling this story to encourage you all to trust yourselves and your bodies. If you know something is wrong, don’t let anyone tell you differently. Keep going back until someone is willing to listen to you. Fire as many doctors as you have to. Nobody knows your body better than you do, and we all need to listen when it’s telling us something isn’t right.
Two years ago I wrote a much more detailed story about my diagnosis. Of course, a few things have changed, but the diagnostic journey remains the same. It can be found here.
It’s a hard tightrope to walk, knowing when you need to keep pushing and knowing who and when to trust. Once you find your team, you will have to trust them and listen to them in order to move forward with a treatment plan. But never be afraid to ask questions, to push back, and to tell them what you want. Never give up your power. You are just as important in your healing journey as anyone else.
Song of the Week: “The Thread” by Shovels & Rope