Northwestern University Feinberg School of Medicine
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Finding Your New Normal After Cancer

By Nicholas Aiello

nick.jpgDealing with cancer is one of the hardest experiences someone can go through. The combined stress of health, financial and social anxieties get all wrapped up together. While I struggled with all of those issues, the most emotionally taxing time for me was trying to re-enter society after treatment like everything was hunky-dory.

Young cancer patients are presented with a strange new reality after getting the “all clear” from doctors. You’ve realized how short life can be, how real your own mortality is, and what truly matters to you in your life. Now go on and live the rest of your life -- with knowledge that takes some people a lifetime to understand.

If there’s one good thing about cancer as a young adult, it is that it makes you focus on what you want. In my daily life, I can struggle to make even a small decision because I overthink it from all kinds of different angles. Cancer strips all of that away. The only thing that matters is eating enough of the right food and drinking enough liquids to make it to the next day. There is something freeing in that. It’s better than a vacation in that regard. On vacation you know your daily troubles are waiting for you when you get back. With cancer, there are no other problems because tomorrow isn’t guaranteed. Just show up for treatment, eat meals, drink liquids, and try not to crack.

So after your treatment ends, you are lucky enough to get good news from your doctors. Hooray!!! Finally time to get back to doing all of the things you missed. Friends and family congratulate you. Co-workers welcome you back into their world. It’s a rush of emotion and accomplishment. And this is where I started to break down…

Snap Back to Reality

I will never forget my first day back at work after treatment. I felt like a conquering hero returning from war. I had gone through nine weeks of chemotherapy for testicular cancer that had spread to my abdomen, but I had gotten through it. I didn’t have hair, my skin was pale and I needed to put on weight, but I was there. Work friends congratulated me. It was emotional. I met some new people that had been hired while I was away (side note: what a weird experience for them. “Hey Jim, meet Nick. He’s the guy who we thought might die but he’s here now. Go ahead and tell him about yourself!”).

After hugs and a few tears, I walked over to my desk, sat down, took a deep breath… and realized I had to pick right back up with mundane tasks and cold calls to sell mutual funds. After having a testicle removed, enduring chemotherapy and coming out on the other side, it was now my responsibility to log calls and hit arbitrary deadlines. How are you supposed to rationalize that after facing your own mortality? Young cancer survivors face a unique situation -- living life with this weight while everyone else their age is in a far different mental state. People expect you to jump back on the train and keep riding, but there is no going back to how you used to process life.

You realize the world didn’t stop while you went through all of your life changing epiphanies. You still have bills to pay, boring meetings to sit in, small talk to politely handle, and social obligations that are more obligation than enjoyment. When I was going through treatment, I imagined how I would come through this experience with a newfound sense of purpose. I wouldn’t waste time on things that didn’t matter. Every day would be a celebration of life and the human spirit. I didn’t envision listening to a sales manager explain a new way to present a fixed-income investment strategy.

Everyone who supported you through your cancer journey has to get back to their own lives, too. Friends and family heard you say you’ve been cured, so everything is back to normal, right? Happily ever after. Roll the credits.

You stop getting as many texts with people sending good vibes and congratulations. People are less forgiving of your faults and mistakes. New people you meet will have no idea what you just went through. And honestly you can’t be frustrated with anyone for any of this. They have their own lives with their own responsibilities, goals, and experiences. Eventually you even have to stop playing the cancer card when you make mistakes (but use that card as long as you need to. Seriously. You didn’t choose to get cancer. It’s like a video game cheat code in certain situations. I had a couple of rude, older gentlemen making fun of my haircut when it was growing back post-chemo. They had no idea I had cancer. It still makes me smile when I think about telling them how I had just finished chemo treatments).

The occasional follow-up blood tests were emotional rollercoasters. Blood would get drawn early in the day, there would be a visit with the oncologist, then back to work explaining where interest rates were heading -- while all I could think about is whether I had cancer again. After a few hours, I would get an email with the results. I know there is no better way to deliver that news, but it felt like the last day of spring training in the movie “Major League,” when the players have to open their lockers to see if they still have a job.

One thing no one told me about is the “anniversary anxiety” that comes with dates or times of year where you were diagnosed or started treatment. Not everybody gets it, but it rocked me several times. I would become agitated or short tempered for no apparent reason. It was a long time before the episodes were noticeably better, but my understanding it was the first step toward dealing with it. I even told a few friends and co-workers when the anniversary of my diagnoses was coming up, in the hope that they would forgive me if I acted strange.

I struggled for a long time with work, happy hours, parties, weddings, and dating. I turned to alcohol in many of these situations to calm my anxieties. I didn’t even realize that’s what I was doing at the time. It wasn’t until I met a group of other young cancer survivors that I began to feel at ease with my feelings. Meeting and hanging out with people who had gone through something similar made a huge difference for me. I do not like to think about where I would be without them.

Getting back to “normal”

It helps me to remember that I am not alone. There are people who share my experience. If you can talk with a therapist, that’s one good way to process everything  It helped me to figure out what was important now that my mindset had changed so much.

Here are some other things that helped:

  • Joining groups or attending events with other young cancer survivors was one of the best things for me. I held off on this for a while, in part because I didn’t want cancer to define me but mostly because I didn’t want to think about cancer any more than I had to. I was lucky enough to be asked to be part of a meditation study for young cancer survivors, so I was able to convince myself that by going I was helping other people. It was the best thing I could have done to help deal with the stress of trying to understand life after cancer. I bonded with several of the other attendees. I even be-grudgingly went with one of them to a trapeze event for young cancer survivors. It was amazing! I still need to work on convincing myself to attend more events like this because they really do help. Northwestern’s Lurie Cancer Center and Gilda’s Club Chicago put on many great events throughout the year, and I highly suggest going to as many as you can.
  • I had to be honest with close friends and family about what I was going through. Those were hard conversations to have because I had been so focused on convincing everyone I was 100% fine. Some were surprised and questioned why I didn’t have a brighter outlook on life considering the alternative. Eventually they came to understand that it is a strange experience to live through. I am glad I talked through it with them.
  • Joining a peer support program that match cancer fighters, survivors and caregivers with people who have been through the same type of experience is a great way to talk to someone who’s gone through some of the same things.
  • There’s a great book called “Dancing in Limbo: Making Sense of Life After Cancer” by Glenna Halvorson-Boyd and Lisa Hunter that helped me understand I wasn’t alone. Reading it helped me, and even my family understand some of the common emotions after treatment has ended.
  • The anxiety around check-ups got better as time went on, but it’s still something I try to plan around if possible. I am honest with family, co-workers, and friends about how distracted I could potentially be around those times. Try to be kind to yourself.

My life is different than it was before cancer. Not better or worse, just different. No matter where you find yourself after treatment has ended, try to remember that you have been through so much that was out of your control. You’ve already shown how incredibly strong you are.

Nicholas Aiello was 28 when he was diagnosed with testicular cancer.