There are plenty of side effects to cancer. Most of them are horrible. However, if you sit back and think about it, there are a few good ones as well.
For me, my favorite cancer side effect has been empathy. Don’t get me wrong, it’s not that I wasn’t empathetic before, I’ve always had a soft spot. But once you’ve endured a good amount of suffering, you tend to be more aware of the hardships endured by others.
I’ve been incredibly blessed with the support that I’ve received throughout my tenure as “cancer patient.” I know that I’m luckier than many in that regard. So when an opportunity presented itself to pay it forward, I jumped at the chance. That opportunity is the American Cancer Society’s Hope Lodge. I’m lucky in that I have one of the best cancer hospitals in the world in my own backyard, but not everyone has that access to care. Hope Lodge offers free housing for patients (and caregivers) that have to undergo cancer treatment far from home, and I was beyond honored to be asked to tell my story at their NYC Bash, an event that raises crucial funds for the facility.
As per request (**cough, cough, Mom**), my speech is below. To learn more about Hope Lodge, please visit cancer.org/hopelodgenyc.
In the summer of 2014, life was getting back on track for me.
I was living with my dog in a cute little cottage a mile and a half from the beach in Westhampton, I had just taken an incredible trip across the country, and I just met a cute guy after being single for a little over a year. Things were starting to look up, but I just couldn’t shake this pain I had. It had been ongoing for some time, and I did what anyone would do — I googled my symptoms. Colorectal cancer popped up as a possibility, but WebMD will diagnose you with cancer even if you have a hangnail, so I didn’t put much stock into it. So I waited to go to the doctor until the dust settled in my life. But by October, it got to the point that I couldn’t ignore the pain any longer.
I remember sitting on the exam table and looking at the face of my gastroenterologist. Her previous light, airy disposition was replaced with a sullen expression as she said, “well, if it’s cancer, it’s a highly treatable kind…” I was shocked. The next few days were a blur as I prepped for my first colonoscopy. All the while, I was still thinking it couldn’t possibly be cancer. I reminded myself that Colorectal Cancer is for people over the age of 50. I was 31. But sure enough, I woke up from the procedure with my parents on one side of the bed and my doctor across from me. “It’s cancer,” she said. My mother burst into tears and my father braced himself against the wall to keep from passing out.
A week later, I was at Sloan Kettering being told that I was at stage 3. Due to the location of my tumor, it would mean either a permanent colostomy bag, or an experimental combination of radiation and chemotherapy that would render me unable to have children. Honestly, the thought of telling a date that I had a colostomy bag scared me so much that I opted for the latter. The next year of my life was filled with fertility treatments to salvage anything I could, radiation 5 days a week and 6 months of chemotherapy.
I wish I could tell you that it worked. That four years later, I’m standing here cancer free. Unfortunately, that wouldn’t be true. In December of 2016, I found out that it had returned, this time it meant more surgery. And, because my oncologists have a unique way of ruining my holidays, in December of last year, they told me I have five new cancerous areas in my abdomen. This time, I’m inoperable and, barring some breakthrough with immunotherapy research, I’m effectively incurable.
Despite having a 30% chance of survival, I do consider myself lucky. Right now, it’s not life-threatening as it’s not in any major organs. But it does mean living life three months at a time, never knowing what the next scan will show. It means maintenance chemo, which is the reason for my interesting choice of headwear tonight (you don’t want to know what it looks like all up under here. It’s liable to scare small children). It means each new pain I feel is accompanied by fear of metastasis.
But I have a lot to live and fight for. That cute guy that I met two months before diagnosis is sitting over there. In April, he put my grandmother’s ring on my finger, and we’re planning our June wedding. Not only do I get to marry the man that has stood by me through everything, but I get to spend that day surrounded by all of the people in my life that have supported us…and, much to the protest of our wedding budget, there are a lot of them. I’ve learned that one of the few silver linings of cancer is that people come out of the woodwork to tell you what you mean to them. I’ve never felt more loved in my life. It’s something I wish everyone could experience…minus the whole cancer thing. But because I’ve had so many bad days, the good days are so much better, and I’m so glad I get to experience them with the filter that cancer gave me. It’s made me take stock of my life and rid myself of that which doesn’t matter. And it’s given me new goals, which is why I’m on this stage tonight.
Cancer definitely hijacks your life in every possible way, but there are also ways to turn that into something good. Last year, I was sitting at one of those tables in the back of the room. It was my first time at Bash, and I was here not as a cancer patient, but as a sponsor. I sat there, watching the screen as a video played showing Hope Lodge and its beautiful residents. My eyes overflowed with tears. In my mind, I was immediately back at my little cottage, attached to my chemo IV (I get three days of what I call “chemo to go”), nauseous and weak. I know exactly what these patients are going through. The counting of days post-treatment when you’ll start to feel better again before your next cycle. The frustration when you barely have the energy to walk to the kitchen to get a glass of water. Having to sit down in the shower because you don’t have the strength to stand, and wistfully staring out the window, watching people move about their day and wishing you were one of them.
I’m lucky that I live close enough to Sloan that I can be back in my own bed. I couldn’t imagine having to be somewhere unfamiliar, away from the people I love. But on that video, I saw smiles. I saw hugs. I saw not just a place to bide your time while undergoing treatment, but a community of patient and caregiving peers, people connecting through their shared experiences. People that understand what it feels like, that can commiserate with you when you’re feeling your worst, that can share tips to make it a little bit easier, and that can celebrate with you when you have a win. There was also a staff that makes you feel like you’re home, even when you’re far from it. Above all, I saw opportunity. A stay at Hope Lodge means accessibility to the best possible care, and that is invaluable. I left that night excited to get involved. I emailed the fantastic Lainie Jones the next day, and set up a tour of the facility.
I know firsthand how important your environment is while undergoing treatment. It’s a source of comfort, enjoyment, relaxation and of stability when life is otherwise daunting and chaotic. What I didn’t realize before undergoing chemotherapy was just how affected I would be when something was off in my surroundings. From certain types of light, to the smell of my new car, to the feel of cold against my skin, chemo wreaked havoc on my senses. It got to the point that I even found myself frantically searching for paint when I decided that the dull yellow color of my little cottage was making me nauseous. Cancer treatment is simply overwhelming.
While I connected with Hope Lodge from the perspective of a patient, I also looked at it through the eyes of someone who has worked in the interior design industry for the past 13 years. I’ve seen the incredible spaces that designers are capable of creating and my mind went into overdrive as I thought about ways to connect the two worlds that I’m passionate about – design and cancer advocacy. Last year I had the privilege of listening to Guillaume Gentet, prominent designer and longtime supporter of Hope Lodge, as he explained his desire to create an even better environment for patients and caregivers. I knew I wanted to help in any way that I could.
Over the past few months, I’ve had the pleasure of sitting at the table with a group of passionate, thoughtful individuals at the American Cancer Society, discussing the possibility of creating New Hope New York, a permanent showhouse at Hope Lodge that will both highlight the talents of the interior design industry, and provide a new haven for my fellow patients as they undergo treatment far from home. We have the mission, we have the passion, and now all we need is funding, participation and sponsors (that’s it), we’re hoping you can give us a jump start towards a New Hope for New York.
I’d like to finish by making two statements on behalf of my fellow patients. First, please stay on top of your health. Had I just gone to the doctor earlier, I would have saved myself so much pain, anguish and loss. Please go for your screenings if you’re of the recommended age, have a family history, or just feel like something’s off. You know your body better than anyone.
Finally, thank you. Thank you to Ron and Sandy Diamond, thank you to Guillaume and David, thank you to the American Cancer Society, and thank you all for your commitment to providing us with a safe, beautiful space to recover, heal and thrive in the face of cancer.
This post originally appeared on Keeping Cancer Classy on November 8, 2018. It is republished with permission.