Two years ago today, I heard the words desmoid tumor for the first time.

It was a Thursday. It was late, I think – at least later than I expected a phone call from a doctor’s office – maybe 7 PM? The call was from the nurse practitioner in thoracic surgery. She said it “fibromatosis, desmoid type,” and that it was cancer.

I googled everything I could in the next several hours, voracious. Everything I found said a desmoid tumor was benign, not cancer.*

*My tumor will likely not metastasize, so google called it benign on February 15, 2018, and still does today. Its official classification is an intermediate grade soft tissue sarcoma, and it requires chemotherapy to be managed. I decided to go with my thoracic surgeon’s assessment and call it cancer on February 15, 2018, and I still do today.

Honestly, it’s remained that confusing as that ever since.

It’s strange to occupy this middle ground, this place where I am never fighting for my life but never permitted to live that life normally again, either. If I’m being honest, it’s a hell of a lot harder than I anticipated.

I went through this manic, almost giddy phase when I was first diagnosed. My thoughts, internal or spoken, were along the lines of, “okay, life, BRING IT ON! Let me show you what I’m made of! Maybe I’ll be one of those people who RUNS MARATHONS when they get cancer. I’m already a vegetarian, so my body is going to do better with this than most people. I am going to BEAT THIS.” I wrote somewhere in an early blog post that I was protesting the word sick. I didn’t want to think of myself as a cancer patient. I met this like every other challenge I’d been presented with: with the fierce determination only an Irish Taurus could posses.

But I’ve come to find that this would be unlike any other challenge I’d come up against before. It still is. I know now that I will likely have this tumor for the rest of my life. My goal now is a bit more realistic: to make it smaller so I get my range of motion back and my pain is reduced.

Hanging out at my most recent infusion, #11.

As two years have passed, my diagnosis has changed me. I remember saying at a CancerCon breakout session last year that I was finding it impossible to go back to yoga and meditation, things that used to bring me peace. I closely associated them with my pre-diagnosis life. It was painful to sit on my mat, unable to enjoy the body I once had, and my quiet mind became a playground for anxious thoughts to take control. A woman in the discussion shared her thoughts, “well, your practice may look totally different now, and that’s okay. Your life is totally different now.” I’m working to accept that I can never go back. It sounds naive, or perhaps just obvious, but when put in practice, the two years of living with this are hard to stack against the 28 years of life “before.” I’m growing to accept that something life-changing does not leave you the same after occupying such a large space in your life.

Here’s how I’ve seen myself change over the past two years.

I have accepted chaos as truth.I used to buy the “sugar feeds cancer cells” myth. I built up this ivory tower of vegetarian cookbooks and essential oils, each ounce of them surely saving me the pounds of cure standard to the traps of American healthcare. Whelp, I’m sorry to tell you: a plant-based diet will not keep you safe. Making your own cleaning products will not save you. And boy, does that suck! It’s easier to feel safe, to feel that our actions are securing health for the future. A handful of people have said to me, “at least you know you did everything you could,” to which I respond, “I wish that were enough.” It just doesn’t work that way, at least not for me. There’s a certain humble reckoning to be had knowing that death, and its henchman, cancer, do not care where you live. They find you anyway.
I pick my battles.I still make my own cleaning products, because I’ve got enough chemicals floating around in my bloodstream thanks to chemo, and I’d prefer to cut down where I can. I still love using my essential oils to help me sleep or address a minor ailment. But the illusion that I am in control is no longer at play. I don’t worry as much if my produce is organic. I take more prescriptions because holistic remedies don’t always cut it, they bring me relief, and my body needs them to feel better. The battle picking applies to household tasks as well. I choose more often to conserve my energy for the things that matter to me. I go to Wawa for dinner when I’m straight up too tired to make it. I leave the dishes unwashed in the sink in favor of snuggling up with my dog and watching Netflix.
I make decisions from a place of seeking happiness. I eat more pie, because I really enjoy the challenge of baking them, and they’re delicious. I stopped watching Handmaid’s Tale on Hulu, because real life was throwing enough downers my way. I spend my money on the things that bring me joy, like travel and holiday decorations that I see every day.
I am more comfortable with being uncomfortable. Grief and I know each other better. In the past two years, I’ve lost two dear friends to other forms of cancer. I have also mourned the life I thought I would have for 730 days. While it has been agonizing, I like to think that I am better at speaking with others going through unimaginable moments. Stephen Colbert put it best in an interview with Anderson Cooper. “You get the awareness of other people’s loss, which allows you to connect with that other person, which allows you to love more deeply and to understand what it’s like to be a human being if it’s true that all humans suffer . . . . At a young age, I suffered something so that by the time I was in serious relationships in my life, with friends, or with my wife, or with my children, I’m understanding that everyone is suffering.”
I know that I am more than my career. It’s the all-time most common Hallmark Christmas movie trope, doesn’t it? Young, single professional who needs to learn that work isn’t everything? It’s a stereotype for a reason, I think. When you’re driven, have passion, and are given opportunities… it often just happens. But after a year out on disability, I know that the world will still turn if I am not there to deliver a lesson on theatre history. I will not get a shiny gold star for working when I am truly ill and need to be home. On a really good day, I even feel less guilty for saying no to things, knowing without boundaries I will burn out now more than ever. In addition, having a life outside of teaching makes me a better teacher, because I’m happy and fulfilled in multiple areas of my life. Going forward, I plan to use all 10 sick/personal days that I’m contractually permitted. I’m thankful that I have coworkers who have supported me in setting boundaries and making changes to plans, and I hope to continue seeking fulfillment in all the different roles I have outside of the classroom.
I am connecting with a wider audience about our shared experiences. I’ve shared here about CancerCon and just how transformational that event was for me. I loved getting validation of my experiences in a cancer patient space, and I would not have felt nearly as supported going into doxil infusions without that event and the connections I made. Next year, my role is going to grow – I’ve been asked to be a keynote speaker at CancerCon 2020 in Seattle! I’m equal parts humbled, honored, excited, and terrified. I like to remind myself when things are scary that I’m already doing chemo, so as my track record shows, I’ve done harder things. This will be a victory lap in comparison.

If I had to summarize, I think cancer has made me more human. I’m not a guru, or an influencer, or even really qualified on anything other than my own experience. This is not a place where I will reveal the secrets of “doing cancer well,” because I certainly don’t know what that looks like and don’t pretend I do. This blog is a place of reflection. Writing for you all has helped me process personally, and it’s helped me feel heard publically.

From the bottom of my heart, thank you for taking the time to be a part of my growth.