I am not this hair

Recent photo that captures my decades-long hairstyle
Recent photo that perfectly captures my boring hairstyle

I have had the same hairstyle since middle school. This is not an exaggeration. Mid-length, side part, minimal fuss. I don’t use fancy products beyond shampoo and conditioner. I blow it dry every day (unless I’m on vacation—particularly in a humid destination where I like the curls I get). Sometimes I use a rounded brush on the ends, but usually I don’t have the patience. I know, I know—it makes me incredibly boring, but this has been my hair every single day since the mid-90s.

That’s about to change. And while it is, perhaps, one of the least significant things that is going to change in my world over the next six months, it is the most immediately public-facing thing that will change. And it is the thing that makes it impossible to hide what I’m facing—even if I wanted to.

I got the call on Friday, June 26, 2015. I had been at the office about an hour. I knew it was coming and I wasn’t expecting much. I found the lump on June 15, one week into a two-week boot camp program that mandated two-a-day workouts, six days a week. I’m not one to go to the doctor and I joked that it was probably just a new muscle from my workouts, but I made an appointment that day. The doctor took a look, said it was likely a [benign] fibroadenoma, but scheduled me for a mammogram to make sure. That led to a biopsy. Which led to the call.

It is not a fibroadenoma. It is a small cell, neuroendocrine carcinoma (NEC). And they suck. I’m pretty sure that’s the actual medical description. My best friend, who is a doctor but not an oncologist, texted me ten minutes after I told her and told me to tell my mom NOT to google anything. I didn’t need to google it to know it was bad. The day after the call, I received my pathology report, which was mostly medical gibberish aside from one very clear line: “Unfortunately, the prognosis [for this type of carcinoma] is relatively poor.” I’d like to say I’m the type of person who had a calm reaction to this, but I didn’t. I completely lost it.

I’m 36 and, like many people who bumped and bruised their ways into their mid-30s, I’ve hit that point when everything just feels good. Life is never perfect, but my life is really, really good. I live in Boulder with my boyfriend, my dog, and two cats who tolerate me. I hike and I bike and I run and I garden (admittedly not well, but I’m learning) and I read and I take early happy hours with friends and I laugh a lot. I am surrounded by generous and loving family, friends, and colleagues. My career is everything I have wanted and worked for, and beyond anything I ever hoped it might be when I was first starting out.

And I’m healthy. My oncologist even said so in our first meeting after asking me a series of health-related questions. “So, basically, you’re a very healthy 36-year-old,” she said. “Well, yeah,” I said. “Aside from that whole cancer thing.”

I met my oncologist for the first time on Tuesday, four days after the call. By then I had already had a CT scan and she had the results. I’ve come to learn that NECs of any type are rare and they usually present first in the GI tract or pulmonary system. The small cell NEC we found was in my breast, so there was a real fear that it was a secondary site (or worse). But the scan found only the one incidence of cancer. When she told me, I started crying. She held her hand out as if to pat my hand to comfort me and said, “This is good news.” I knew that. It just wasn’t what I was expecting. I was expecting an expiration date.

A small cell NEC presenting in the breast is incredibly rare and while I had been hoping for that outcome, based on the limited information I had going into my appointment, I knew it was a long shot. My doctor estimated there are fewer than 40 known cases in the country. Ever. So much for support groups (by the way: if you happened to find this page because you have a small cell NEC that presented in your breast, feel free to reach out to me). Or research studies. But, if I’m going to have a small cell, neuroendocrine carcinoma—which I guess I am—it’s actually good news. It’s aggressive, but it’s treatable. You know your world has been turned upside down when an oncologist tells you you’re going to need chemo, surgery, and radiation and you go out and celebrate. I actually did that. My chemo started a week and a half ago, just a week and a half after the first call. And it’s a long road, but I’ve always chosen long roads.

Still, it takes my life and shakes it up beyond anything I could have recognized just one month ago. And I’ve had to deal with the fact that people will know—not just in my personal life but in my professional life, which is important to me. In October, I’ll present on the national project I’ve been working on for over a year to a room of legal educators, legal employers, and bar leaders from across the country. I will be 13 weeks into my chemotherapy. I will be more worn out than I usually am. I will be older—not in years, but in experience. I will be changed in that way you change when your life zags far more than you ever thought it would. And if that doesn’t give me away, it will be my hair. It will be gone.

My life will continue. I celebrate a birthday this weekend. I’m planting poppies this fall that will bloom next summer. I even rode part of the Courage Classic just this weekend, a bike ride through the mountains that I have done every year for five years to raise money for the Center for Cancer and Blood Disorders at Children’s Hospital Colorado.

And my work will continue. Over the next year, the initiative I lead is having a big year. We will release the results of a national survey of lawyers on a topic that impacts every lawyer, law school, legal employer, and client. I’ll be there every step of the way. And beyond.

I know that this cancer will change my life. It is one of the first things I knew as soon as I learned more about the severity of my diagnosis. It is an unmovable truth. But I can embrace that without letting the cancer define me and wash away who I already am—and who I will be. As I said to my colleague who wanted to know if she could let one of our organizational partners know what I’m dealing with, “Of course—as long as you make it completely clear that I am still in the game.”

I am not this hair. And I am sure as hell not this cancer.

I am not this hair. I am not this skin. I am the soul that lives within.
-Rumi (and, slightly modified, India.Arie featuring Akon)

25 Replies to “I am not this hair”

  1. Beautifully written and insightful. You will beat this and come out stronger on the other side, especially with such a positive attitude.

  2. You always have been a beautiful girl Alli, inside and out. In my opinion you’ve seemed wiser than your years, and so very kind, even in your teens, when it would have been natural to be self-absorbed, you thought of others. Love your attitude now, and speaking as a cancer survivor, your mature and positive approach will be such an asset in conquering the Big C!

  3. Excellent post. You are and have always been a great writer. It is one of the things I admire about you.

  4. Thanks for sharing and keeping us posted. You have always been amazing. But the way you are handling this is superb. Many of us stand ready to help any way we can. Just ask.

  5. You should write a book when this is all over. I’m serious. I could read your words for hours. Beautiful Alli

  6. Great writer, strong spirit, sensitive soul. I am confident that you will accomplish all that you set out to accomplish, in your usual attitude of joy.

  7. “Attitude is Everything”!!!!! I am a 12 year breast cancer survivor……you’ve got this!!!! Your attitude is a game changer….and judging from what I just read…you have already nipped this in the bud. Prayers for your journey!!!

  8. Well said-beautifully thought out. Please let me know if I can help. Sending you good thoughts.

  9. Prayers going up… You’ve got an amazing outlook and that is key to healing!!
    Stacey Cross
    Hondo, Texas

  10. You are a good woman and them’s fightin words! You are educating as you blog! We are all sending good karma your way. Keep thinking positive and carry on. Love to you.

  11. Thank you sharing your story. Kick cancer’s ass and keep writing. You inspire us all.

  12. I am proud of you, not only are you a wonderful writer, but a strong woman. You are in my prayers as is your family. Your Mom is very proud of your courage and I am proud to call her my friend. Blessings. Peace. Onward. YOU. CAN. DO. THIS.

  13. Previously worked with a surgeon in the clinic and in surgery, I think I have heard it all, wonderful news and terribly sad news. I have seen the look in their eyes when they have “just” received the news and I have cried….and offered hope to all if them. I wish for you courage, strength, and all the love of family and friends that one can achieve. You will be in my prayers!

  14. Ali – you are a strong willed person. I will pray for you and the strength you will need. You got this!

    Mick

  15. It’s no small thing that you’re going into this so healthy. It is already helping you start this journey many miles into the marathon. And, it means you will be stronger for the hardest days. The healthy lifestyle you’ve developed will be part of your support, for which to continue to build upon. The only expiration date immediately ahead is of this NEC!

  16. Alli,

    We share a few things (that I know of) in common. I too have had the same hair since middle school but I love it, so why change? I’m sure as your hair grows back, you’ll retreat to the same old style, and laugh because while it didn’t change, you certainly did! We have the same Aunt Cindy, I am Alexi’s first cousin on her Dad’s side. I am glad you’ve shared your story, you are and will be brave! Be strong! And enjoy this beautiful life! Love, Tanya

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