Fierce, Fighting Friday
Katy Smith, 30
“I wish I could tell myself then what I tell my patients now: numbers are irrelevant. Every person is different. If you only have a 14% chance of living five years, who is to say you won’t be the 14?!”
Provide a brief biography to describe your life pre-diagnosis
Hello Thrivrs! I’m Katy. I live in Albany, NY. I’m a chemo nurse and a chemo patient. I love being outdoors, hiking and kayaking, reading, and baking fancy pastries. I’d really like a dog and some sheep someday, but for now I live in an apartment in the city.
Did you have any symptoms leading up to your diagnosis? What led you to see a doctor?
At 29, I was working nights at the hospital and days running a small business. I was happy and busy, and felt terrible. I had heartburn for the first time in my life, and everything I ate seemed to upset my stomach. I blamed my indigestion on my schedule, shift work, and too much coffee. I tried quitting dairy, gluten, and coffee with no luck. Finally, when I began having rectal bleeding, I called my NP. She wasn’t too concerned based on my age, but since my mom is a colorectal cancer survivor, she decided to be safe and order a colonoscopy.
How did hearing the words “you have cancer” make you feel?
When I woke up from my colonoscopy, my mom and aunt were there. I knew it wasn’t great news if my mom had called in reinforcements! The drugs give you amnesia, so they had to tell me I had cancer a few times.
Somehow I wasn’t surprised. There’s a lot of cancer in our family. But after the initial shock, all I could think was “what do I have to do, and when can we get started?” I was surprised by my own strength. The next few weeks were the hardest, though. Every time a doctor called, the news got worse, and it turned out that I had stage four colon cancer with multiple tumors in my liver, and it was unresectable. It grinds your whole life to a halt.
What do you know now that you wish you had known back then?
First, I wish I had known how important it is to pay attention to your body. We know ourselves best, and there is zero shame in telling your doctor you can’t poop! I don’t have regret or blame for not recognizing my symptoms, but had I caught it earlier my life could have been easier. Don’t let the noise of life drown out what your body is telling you! And don’t be shy reporting concerns.
Second, I wish I could tell myself then what I tell my patients now: numbers are irrelevant. Every person is different. If you only have a 14% chance of living five years, who is to say you won’t be the 14?!
How has life changed? What has been your biggest challenge since your diagnosis?
Life is different now, but not in a bad way. I am always a little tired, and I plan my life accordingly. I still do every single thing I want to do – I just schedule a nap afterward.
My biggest challenge is mental. I don’t think people discuss with young adult cancer the way it impacts your planning. It’s always in the back of my mind. During my five year remission, I still never planned ahead more than a few months. I have savings goals not for houses or vacations or retirement, but in case my cancer returns and I can’t work again. It took me a full five years being cancer free to think about my life in terms of a long future.
Dating is a real challenge. Do I disclose my medical history upfront or save it for the third date? Who wants to plan a life with someone who might die? Or require years of intense medical treatment? I know what I would tell my friends: it doesn’t matter, we all have challenges and we all deserve happiness. But it’s very hard to overcome these thoughts.
What do you wish people knew about supporting a loved one with cancer? What have been the most helpful ways that friends and family have supported you?
Friends and family have been the absolute best part of this journey – I never would have done it without them. My community has supported me financially, physically and emotionally. The most important is checking in, sending a letter or a text, a silly photo. Chemo brain makes me really dumb and I love silly jokes and videos. Send me all your cute animal videos.
I love being invited places, even if I can’t participate. It makes me feel like a person. Going for a walk or a drive is great. Last week, my friends invited me on a little hike that i thought i would really struggle on – this current treatment has really knocked me out and most days I just try to walk around the block. They promised me we could turn around if I got tired. But I had a good day and hiked three miles to a beautiful view! I would never have known I could do it if they didn’t think to invite me. What good friends!
I think people get nervous around cancer if they don’t have any experience. Don’t be shy about talking about our treatment. I guarantee it’s on our minds and the more you learn, the more comfortable you’ll be. It’s only one part of my life, but it’s a huge part of my life.
We have specific needs, but sometimes we are too tired to tell you what they are. “Can I do anything?” is kind but a challenge. Instead try: “I’d like to send you dinner Thursday night – would that work? Tell me your favorite restaurant”. “What day would be best for a walk/visit?” And don’t be hurt if we decline some offers – our bodies are fickle.
During treatment, friends regularly offer to pick things up while they’re at the grocery store or target. What a lifesaver. A trip to the store can use up all my energy for a day. With my current chemo regimen, the best gift in the world has been an Instacart subscription! Thanks, Shan! Another friend drops by on my couch days and just lines up snacks in front of me to make sure I eat 😂. What a champ. My coworkers have been endlessly kind, and even donated PTO so I don’t have to use up all my leave.
Every kindness, big or small, makes it easier to show up on chemo day.
What is (was) your treatment protocol?
In 2015 I was first diagnosed with stage 4 colon cancer with liver metastasis. I did six months of FOLFOX chemotherapy and avastin. I was lucky that the chemo worked well and shrunk the tumors. Then I had a colon and liver resection and was disease free five years.
This January, they found a liver tumor on my routine follow up. I’m currently doing treatment with FOLFIRI with panitumumab, with hopes of a second liver resection and placement of a Hepatic Artery Infusion pump! If we can do that, I’ll get chemo directed right to my liver for a few months. It creeped me out at first to have more devices in my body, but I did some research and I’m excited to be a cyborg.