Let's go back to the beginning...

I sure dropped a bit of a bombshell on my post from the other day, didn't I? Spouting off the C word like it ain't a thing. But truth is, it ain't really a thing at all. It's an attribute of who I am. A part of what makes me 'ME'. And why not label that and show it to the world just like I do my brown hair, meaningful tattoos or salty mouth? Those things all make me into the woman that I am, too. None of them is more significant than any other. Logic confirms that before my doubt can convince me otherwise, but to be open and transparent is a new concept for me. And as good as 'new' can feel, it's scary, too.

So, yeah, I have cancer. More specifically, I have a rare form of cancer called Cutaneous T-Cell Lymphoma, also known as Mycosis Funcoides. My cancer will be with me for life and I've just had to make room for it. And in time, I've learned it's not an entirely awful companion. My cancer has given me clarity in my life that I just don't think I'd have if I wasn't given this diagnosis. I live a fuller life because of my cancer. I laugh more, love more, take chances more and dream more. I probably mess up more, too, because I sometimes feel invincible in the face of my disease. But really, that's just the positive self talk doing its best positive self talking. I'm just an ordinary girl with an extraordinary diagnosis. And I know that sure doesn't make me special. But tonight, I want to start at the very beginning. I want to talk about how I got my diagnosis at the age of 29. And going forward, I will surely share more. Because to know me is to know that my cancer journey is a big part of my writing and my identity and to hide that would be the most disingenuous thing I could do to my tribe.

Well, here it goes...

It was a sunny San Antonio day in 2011. I nervously sat in a cosmetic dermatologist’s office on the northwest side of the city. She was the 25th dermatologist I had seen in the span of 13 years. The nondescript skin condition that I had been battling for all those years was in the throes of a serious flare-up. The worst I’d ever experienced. And at the suggestion of a good friend, I found myself in the beautiful, chic office of Dr. Catherine Tisdall. As I sat in the waiting room, I stared at the advertisements on the walls for Botox, microdermabrasion and other ‘beauty enhancing’ services. I remember scoffing a little, to myself, thinking two very distinct thoughts. First, I felt hideous. I wasn’t there for a vain reason. I was there because I had a large, ugly, painful tumor on my arm and I knew in my heart that it was cancer. And second, I thought there was no way in hell this doctor could help me. No one else could figure it out, so how would she have a clue?

I remember heading back to the examining room with the very worst attitude. I kept telling myself that she’d be just another doctor who didn’t know what was wrong with my skin. And I’d just keep wearing lots of clothing in the swelter of the South Texas heat in an effort to hide the awful-looking patches on my skin. That had been my reality for so many years, so I didn’t have much hope that it would change anytime soon. But I was wrong.

In walked Dr. Tisdall, in a beautiful Burberry plaid dress with a prominent red patent leather belt on her tiny waist. She had gorgeous red heels on her feet and her hair was cut in a trendy asymmetrical blonde bob. Looking back and forth between her outfit and the lavender patient gown they had given me, I felt so pitiful. I thought about getting up and leaving before my tears could well up and be seen. But instead, I blurted out words of desperation. ‘I’m at my wits end. I need help.’

With my guard down, I was ready to show the doctor my skin. She examined my tumor and touched it with a gloved hand. It hurt a lot but I felt better knowing she wasn’t completely repulsed by the sight of it. She pulled her glove off and stepped back a few feet. And with the utmost authority and a serious, stern gaze, she said the words that would change my life: ‘This looks like cancer. I think you have something called Mycosis Fungoides. It’s an extremely rare form of t-cell lymphoma that manifests itself on the skin. I’d never have thought to test you for it if I hadn’t just read about it in a medical journal.’ And with that, she took a large biopsy, stitched me up and said she’d call as soon as she had results. That was it. I got dressed and left her office with a slip of paper with two foreign words scrawled upon it.

I spent the next 48 pouring over the internet, reading anything that I could about my potential new reality. And then the call came. Dr. Tisdall matter of factly told me that I have cancer. That I had a unicorn of a diagnosis. A disease that only afflicts 1 in 800,000 people worldwide. It felt like the most unlucky of distinctions to receive. But what choice did I have? I finally knew what I was up against and could give it the fight that it demanded. And with proper treatments, I’ve beaten some of the odds. I’ve kept my cancer at bay better than I could prior to my diagnosis and attacked it with new treatments as needed. I’ll have this cancer for life but it’s just a part of who I am now. And as crazy as it sounds, there’s peace in that knowledge.

I’m rare and I’m grateful for the chance to say that. Embrace what makes you different, too. Don’t be afraid to stumble and never stop supporting others when they need it, too. Having a rare disease is really hard at times, when answers seem fleeting and awareness isn’t terribly prominent. But the more we talk about it, the more people might be helped. So keep the conversation going and going and going. And that's exactly what I intend to do.