Saturday, July 12, 2014

Day 1,489: One Year Later--Again

A year is enough time to reflect on, usually. Usually, a year signifies beginnings and endings. Seasons change. People change. The time goes by too fast, or not fast enough.

I'm not really sure what to say about this past year.

A year ago today, I got that phone call--again. Before the call came, I already knew I had cancer. I knew the day before, when I laid down on the biopsy table for the second time in my life. I had already cried, already gotten drunk.

The thing I had been afraid of for three years--well, the penultimate level of that thing--had happened. And though I couldn't know it then, by it happening, I was released from the fear of it happening. I was also released from the status, or the burden, of being a "real" cancer survivor, as the lexicon of cancer survivorship does not really extend to multiple outings.

A year ago today, I didn't know if my cancer was localized or not. I didn't know if I had mets. I still don't, and I still live with the one in three chance that I will develop it, at which point I would have an average 28 months to live, though it is often much shorter for triple negative disease. A year ago, I hadn't yet done the bone scans, MRIs, CT scans. I hadn't learned that I would need to do chemo again.

I spent seven of the last twelve months in active cancer treatment or recovery from surgery. This time, we were significantly more isolated than during my first cancer. Some people grew afraid of me, some people grew tired of me having cancer, some people seemed to think that I could handle everything just fine and therefore wasn't really sick. I know it's not kosher to say that, but it's true. Obviously many people did not feel like that, and we have wonderful family and friends. But those who have dealt with such issues understand the importance of discussing those losses, and whether it is true or not, we felt that we needed to go it alone this time. And we were so busy trying to manage our lives, and my new job, and our children, and I was so hellbent on just powering through, that it was hard to see the little things that were happening as they happened.

I knew I had vertigo, but I didn't realize how bad it was. I could not sit on my bike at the gym and move my arms off the handlebars to stretch without falling. It took a while to realize my hair was thinning. That whole chemobrain thing took me by surprise. My depression, my PTSD, they seemed superfluous, extravagant, like things I didn't have a right to have. That necrotic flesh over my mastectomy scar, the D&C, all the things that happened, they became these strange little stories that were not so far afield from discussing weekend plans.

I lost a part of my body. It's strange, but I don't miss it, and I don't want it back. I know how many women look and feel disfigured and alien to themselves after breast cancer. I don't know if it is because I had amazing surgeons, who left me looking as normal as possible considering, or if it is just because I have stopped caring about how I "should" look, or a combination of both, but I have adjusted just fine to this new body. Of everything that's happened, losing my breast has been on the lowest end of the spectrum of important things. I looked at this new body the morning after the surgery and said: Huh. That's not so bad. And maybe by saying that, I believed it, and it led to this place where the strange round nippleless lump sitting on top of my sternum and ribs that are down to just skin and bone, making indentations in my chest, can look simultaneously alien and just like me. My husband was telling me how much he loved my body recently, and he touched my implant and said: "And this? Even this. It looks like you now. That's your body now. That's your skin."

(This picture was taken the night before my mastectomy.)

It's a skin I feel comfortable in, and it's one all my own. This year has been cold and dark and hard, but not all the time. It's always colder, darker, and harder somewhere else. There will be another time in my life that will be ice and blackness and Sisyphus' stones compared to this.

But I've said it before in this forum and I will say it again--not yet. Not yet.

I've said those words to myself every single day of the last year, of the last four years, really. The ability to say them is a privilege denied to many. So what can I say but enjoy your years, and the age they bring. Live in the skin that holds you, not the skin that holds someone else or the person you might have been.

It might be different next year.


  1. I really have to get a t-shirt like that. Cancer is complete bullshit - thanks to you and Gabe for being an inspiration to us.

  2. I want that t shirt as well....

  3. Thanks for sharing Katie. I truly love your honesty :)

  4. I always tell myself that I've read your stuff for years and that it won't make me cry. But this: "Live in the skin that holds you, not the skin that holds... the person you might have been." Fabulous. *sniff* Love you, lady.

  5. Your bravery and resilience is really inspiring. It's very emboldening to see how you put up amidst all that, with even a wig or so. You do deserve the righteous treatments and to get back into shape and for your hair to grow back, which is, of course, very possible. Wishing you all the best!

    Byron Brewer @ Knight and Sanders

  6. Hi Katy! My name is Cameron Von St. James and I had a quick question for you & was wondering if you could please email me when you have a free moment. Thanks! I really hope to hear from you soon and appreciate you taking the time. ☺ cvonstjames AT gmail DOT com

  7. A beautiful post. I wish you continued health and recovery. I did not mourn the loss of my breast, either. But I miss that it had feeling. We all mourn something, just not the same things. And we all miss a lot.

  8. Katy, I'm sorry for all you've gone through. You've had such an awful time of it. I understand the part about losing friends; I had people leaving me to fend for myself and others distancing themselves from me. Or they thought I was some sort of superhero. Great post.

  9. Wonderful post you have there Katy! I admire your courage! Continue to stay positive and never lose hope! You're post is truly inspiring. I've read articles, write ups and news about cancer patients and honestly I'm so moved about their stories. My sister have been working as a nurse in Europe. She told me that some people from around the world travel that far to find the best cancer treatment in Europe. I recall her story about one of their patients in the hospital who is diagnosed to have prostrate cancer. He still manage to talk and laugh out loud everyday instead of feeling sorry for himself. Anyway, that's the spirit Katy!