Fuck you, it's cancer

Living with Cowden syndrome is an exercise in patience and frustration. As often as I talk about learning to deal with the challenges unique to being a previvor, as much as I worried about eventually getting cancer, I never fully thought it would happen. I let this site lay fallow after my thyroid surgery, settling into a life where PTEN seemed like a vaguely unsettling but ultimately manageable shadow. It was the monster who had lived under my bed since childhood, but I had learned mostly to not believe in monsters.

Instead, some time in the intervening six months the monster crawled out from under the bed and made room for itself. Because I have been extremely responsible with my screenings, the monster is not big. It is measured in millimeters, and it hasn’t figure out how to get out of the milk duct. It doesn’t kill you unless it gets outside the breast, and we are a long, long way from that.

I had other plans. I paid to keep this site up because I thought I was going to want to write my way through the process of getting IVF for non-fertility reasons. I was nervous about more invasive procedures, being awash in hormones, and the challenges of pregnancy and birth. Aaron and I both got new jobs, and I have been enjoying settling in to something that feels like a real career. We were planning on taking one more big trip before starting IVF, so we were about to buy tickets to visit friends in Bosnia. I bought a some book about having a kid at the recommendation of my therapist. Things were calm, my health was good, I was nervous but committed.

I went into this June knowing it was a packed month. My breast biopsies were two weeks ago, the anniversary of my dad’s death is June 10th, I’ve been traveling a lot for work. I got the call with the results while I was out of town for a conference, and I am having a hard time shaking the memory of sitting in my gym clothes in a cold hotel hallway, struggling to hear my surgeon give me the news I never wanted. Aaron drove six hours roundtrip without question to pick me up and take me home…. driving south on I-35 at midnight is a pretty decent approximation of the confused isolation I felt.

I have three options for treatment, but because I am high-risk the wisest decision is a double mastectomy. I am 32 years old, and facing down the prospect of losing a part of my body I treasure. I am grieving never having the option to breastfeed my future child (while also having my future hackles raised by thoughtless busybodies), the loss of sensation, the fact I am going to be undergoing major surgery to remove cancer from my body. I am angry, and am sometimes tempted to answer questions or comments with “fuck you, it’s cancer”. It has only been a handful of days, but I have found I only want to talk to a few people. I am wary of the sad eyes from strangers, the apologies, the sometimes unshakeable feeling that people are grateful its you and not them.

I have walked through chronic illness, traumatic loss, and grief with my family. I learned how to survive and be ok, but I also learned that death and illness and especially cancer scare people. They don’t know how to talk to you, and they disappear because they don’t know what to do. When this happens, its another loss, a type of emotional trauma that some people fail to consider. Sometimes the hardest part illness is not the pain or the recovery, its the vanishing of people from your lives.

This process is going to be long. I’m hoping to schedule the surgery for the end of July, and then there will be 6 weeks of recovery and rehabilitation. My goal is to live it out in a way that is open, honest, and demystifying. I want to draw people in, and show that cancer is not contagious. I am a million things before I am a cancer patient— as are we all— and I think that’s the most important thing to be understood.