Yesterday, I was a featured speaker at a Cancer Survivors’ Day celebration in Providence. One of the reasons I didn’t blog last week was that I was focused on drafting my speech for the event. I never get nervous about delivering speeches, but writing them stresses me out! As I posted on Facebook last week: “Writing is hard enough. Writing a speech that will be delivered to a room full of strangers is agonizing.” And on top of the regular agony was the knowledge that I’d be addressing a group of fellow cancer survivors. The pressure was ON.
I think it went pretty well — I received a standing ovation, which was both surprising and incredibly moving. And I got to share the dais with my oncologist, who was also speaking at the event. Three years ago yesterday, I was in the midst of the second of four cycles of chemo, and life was pretty rough, so thinking about that amidst the applause (and seeing my son in the audience!) was downright surreal.
I’m posting my speech below, in case anyone is interested. I should tell you that I reveal something in the speech that I’ve never made public before: in August of 2011, I was diagnosed with a SECOND type of cancer, namely cutaneous T-cell lymphoma. It manifests as a rash that looks a lot like eczema, which is what fooled me and my doctors for years. It’s very slow-growing, so I had it for more than a decade, and it never showed up on any of my prior scans because it’s on the surface of the skin. Despite the fact that I had it for so long, it was still caught at a very early stage, and was relatively easy to treat; for a year after my diagnosis, I received phototherapy treatments several times a week (basically a glorified tanning booth), and the rash disappeared. The bottom line is, I am totally fine and healthy now, and there is a very low chance of recurrence.
To be honest, I didn’t reveal this bit of news while it was happening because I was EXHAUSTED by talking about cancer, and wanted to move beyond being identified as sick. And I didn’t want people to worry about me — especially my grandmother, who tends to jump to the worst case scenario, and has been through a lot herself over the past few years. She still doesn’t know, so if you happen to come in contact with her, I’d appreciate it if you’d avoid mentioning it.
Okay. Without further ado, here is my speech…
Almost four years ago, in early 2010, I was thirty-eight years old when I was diagnosed with a rare form of cancer — specifically synovial sarcoma, a malignancy that manifests in the soft tissue. In my case, the tumor was growing in my superclavicular area, i.e. right where my neck and shoulder meet. In February of 2010, I underwent two surgeries, one to remove the tumor, which had inconveniently wrapped itself around my C5 and C6 nerves, and a second surgery, two days later, in an attempt to repair that nerve damage. In the months that followed, I endured physical therapy, the removal of my wisdom teeth (to avoid dental issues that might arise during radiation and chemo), then three months of radiation, and four months of chemotherapy. And then, in August of 2011, I was also diagnosed with cutaneous T-cell lymphoma, a very slow-growing malignancy that manifests as a rash on the skin, which I’d mistaken for stress-related eczema for many years. For the following year, I went through phototherapy treatments several times a week. I am in remission on both counts, though over the course of all of this surgery and treatment, I lost all of my hair, two wisdom teeth, and much of my dignity and autonomy. I’ve gotten most of that back, except for my wisdom teeth, which I don’t miss, and some of my autonomy, given the partial nerve damage I sustained in my right arm. Also, due to some intense food aversions I experienced during chemo, I still cannot bring myself to eat turkey sandwiches or drink apple juice. But I feel I’ve gained much more than I’ve lost through my experience, as it’s given me a fresh perspective of my life, and a new appreciation for my own resilience.
Just to give you some context…about a year before my sarcoma diagnosis, I’d been laid off from my job, as an editor in New York. I’d been taking the train into the city once a week and working from home the rest of the time. I’d been growing weary of the corporate world, so when I was laid off, it was not hard to see the silver lining. I soon started my own editorial consulting business, and was looking forward to being my own boss. Though I kept experiencing this nagging pain in my right shoulder — I was sure it was a repetitive stress injury, from more than ten years of lugging around huge bags of manuscripts.
Up to this point, I was always focused on the needs and desires of others, one of the things that made me such a good editor. I had such a calming and encouraging manner, I was often referred to as the “author whisperer.” Though I had my own ideas for stories, I never seemed to have the time or energy to devote to my own writing career. And I certainly never considered myself as worthy of that time and energy as the authors I was nurturing. As you might imagine, I was the same way in my personal life, always putting the needs and desires of others before my own.
On top of all of this, for three years prior to my diagnosis, my husband and I had been trying to have a baby. After consulting with specialists and undergoing testing, I was diagnosed with the painfully-ambiguous condition known as “unexplained infertility,” and began a regimen of intense and invasive fertility treatments, all to no avail. In fact, just before my diagnosis, we were contemplating whether or not to embark on our fourth round of in vitro.
Of course, all that was rendered moot after my diagnosis. But it felt like a reprieve, in a way, to have to put everything and everyone in my life aside or a while. For me, having cancer, and having to deal with the surgeries, the radiation, the chemo, and the recovery from all of those things, forced me to focus on myself and my needs. For the first time in my life, I had no excuse for ignoring myself.
As it turned out, most of the people who usually depended on me figured their problems out for themselves, and have come to respect my new priorities. And those who haven’t have experienced my new intolerance for any sort of malignancy in my life.
In a way, I feel as if the experience of having cancer has given me superpowers: I’ve developed a heightened sensitivity to toxic people, the ability to stand up for myself, and a facility for saying no when a situation doesn’t seem healthy for me. It’s said that when you’re faced with losing something, you learn to appreciate it so much more; in my case, I’ve been compelled to honor myself and protect everything in my life that brings me joy. To that end, I’ve also finally realized that I need to focus on my own writing, so I’ve shut down my consulting business, retired from editing, am now a full-time writer.
And I’ve found that when I make room for more fulfillment and joy in my life, that space is quickly filled up with even more goodness. Last year, on October 4th, I prepared to celebrate the second anniversary of the last day of my chemo. It was also the day I had the greatest surprise of my life, when I found out I was pregnant. Thankfully, I had a fairly easy pregnancy, which I can also owe to my experience with cancer. After enduring chemo, being pregnant was a piece of cake. Food aversions, nausea, and other weird changes in my body? No problem! Needles, hospitals, unimaginable pain? Bring it on. Of course, it helped knowing that this time I was incubating something positive — my son, Camden, who will be four months old tomorrow.
My husband and I named him Camden after the town in Maine where we vacationed after I finished my radiation. After so many months of anxiety and turmoil, it was the first time we felt peace. We go back there every year now, and next time, we’ll be able to bring our son with us, and celebrate how far we’ve come. Speaking as a writer and as a cancer survivor, I can tell you that the best stories are the ones that keep surprising you.
Thanks so much for sharing the speech – very glad that your writing is also coming into the world.
Thanks so much, Cathy! 🙂
Beautiful speech from a beautiful person. Cheers to you, Kara!
Thank you! 🙂
Eloquently said. xx
Thank you, Sharon — high praise, coming from someone whose writing I admire so much!
I am soooooo very proud of you !! Love you! Aunt Lyn
I give you a standing ovation too. Beautiful speech, Kara!
Thank you so much!
What a beautiful speech. So much here spoke to me, but this really jumped out: “For the first time in my life, I had no excuse for ignoring myself.”