Overcoming Health Anxiety

For as long as I can remember, getting cancer has been one of my biggest fears. When I was a child, my parents had a medical encyclopedia with a symptom checker section I used to pore over, with every symptom eventually leading to an “Emergency! Get help now!” or “This could be a life threatening disease like cancer, go to the doctor!” box. I was both fascinated and terrified at the prospect of ever having anything that fit into one of those boxes. As an adult, I’ve gravitated towards stories of people with cancer and the social media algorithms have made sure to put their stories in front of me. Before removing it, my Tik Tok was a mix of cats, Taylor Swift and people with cancer. Although this led me to hearing the stories of incredible women like Nalie Agustin and Kimberley Nix, the health anxiety it caused was off the charts.

Before getting cancer, I spent my life being a medical question mark born with a genetic disease that even 38 years later isn’t really understood. I also have a variety of odd but asymptomatic or well-managed conditions that I’m seen and scanned for regularly but that don’t have much of an impact on my day-to-day life. Each of these scans inevitably leads to a new incidental finding, which again has allowed my health anxiety to flourish. One of these incidental findings included asymptomatic cystic lung disease, and a routine CT scan to monitor the cysts led to another incidental finding of “severe mediastinal lymphadenopathy” or swollen lymph nodes in my chest.

The CT scan that found my cancer was done on March 20. I hadn’t wanted to go – it was scheduled after work, at a hospital in the “bad” part of town. I had to fast, they were going to use contrast, it was supposed to take a couple of hours – things nobody wants to do after a day of work. I tried to reschedule the appointment but was told it could take months to get another, so I reluctantly went. Nobody stopped me from leaving after the scan, or gave me “the look” Tik Tok had warned me about when the technologists see something life changing. When I got home, I noticed I had received a letter in the mail for a follow up appointment with my Respirologist on April 24, and then didn’t hear anything before the appointment. “Phew”, I thought. “They must not have seen anything concerning.”

At the appointment, my Respirologist appeared to be reviewing the scans for the first time. She seemed quite surprised to see the swollen lymph nodes, which hadn’t been present on my last scan two years prior, and decided to send me for an EBus procedure. The EBus was scheduled a week later, and it took two agonizing weeks to get the results, which were inconclusive but highly suspicious for lymphoma. What really surprised me about receiving the news (over the phone, luckily on a day my husband and I were both working from home) was that life carried on after the phone call was over. By that point, I had spent three weeks going over the phone call in my head, and in my mind the world stopped at the word “cancer” (or, I guess lymphoma in this case). I think I said some interesting words to the poor doctor who delivered the news, though I can’t really remember much besides the panicked phone call to my boss right after. And then the increasingly less panicked phone calls to my mom and other close family and friends. By the time my family and best friend arrived at my house, I was calm. I decided then and there that my number one goal was to not let anxiety or self-pity take over.

Another big surprise was how slowly everything moved. I always expected cancer to be one of those drop everything and get to the hospital sort of events, but in reality many pieces had to fall into place before any plans of action were developed. The first appointment, a PET scan, was scheduled two weeks later, followed by a repeat of the EBus procedure – which again had a two week wait time for results. I was finally diagnosed with Hodgkin Lymphoma on June 17, my brother-in-law’s 40th birthday. After having a full month to process having lymphoma, and getting inundated with information about different types of lymphoma and treatment pathways from ChatGPT, I was tremendously relieved and grateful to be diagnosed with Hodgkin’s. It felt like the best of a bad situation. Using ChatGPT in this way really helped to manage my anxiety, because it was there anytime I had questions or started to spiral. It helped me feel empowered to prepare for what was to come mentally, physically and emotionally. Disclaimer – ChatGPT isn’t always accurate and most definitely should not be used in place of actual medical advice.

Diagnosis to treatment took another six weeks, in part because my oncologist recommended I participate in a clinical trial which came with additional testing. I’ve been tremendously lucky to have support at work and benefits available to be off work through this process, and since I was still feeling good I used these 6 weeks to physically prepare for treatment by increasing my protein and calorie intake (which hadn’t been high enough prior) as well as cardio and strength training. It was scary to think of having to get sick to get better. I also tried to focus my efforts on giving back and began putting together care packages for people going through cancer treatment. Earlier in my journey, I was lucky enough to be gifted a Kits to Heart care package from Sonia, the founder of the organization. This service isn’t typically available to Canadians as shipping across the border requires the recipient to pay duties, and there aren’t any other organizations that offer free or postage-paid care packages in Canada, so I was inspired to create some myself and pay it forward within my local community. At the time of writing this, I have distributed ten packages and have started work on the next batch.

I started ABVD treatment on July 31. The first treatment was extremely difficult in ways I didn’t expect. I started with a relatively high dose of dexamethasone (steroid) for the first three days, which in combination with the chemo drugs led to sleeplessness, reflux, racing heart and palpitations, pimples, extreme feelings of sadness and depression, a sense of my body feeling like it wasn’t mine, muscle cramping, extreme fatigue on day 4, migraines, etc. What shocked me the most was the sadness, depression and loss of my sense of self. Luckily, these were temporary and improved around day 7 or 8, but they were so starkly different from how I normally feel. I was completely unprepared and don’t find the mental and emotional impact of steroids is really discussed, yet so many people seem to experience it. As with side effect management in general, it’s so important to discuss emotional and mental side effects of treatment with the doctor. Cancer itself is obviously mentally and emotionally difficult, but it’s really important to acknowledge some of the drugs can exacerbate or even cause these challenges themselves.

At the time of writing this, I have completed 3 ABVD treatments. I’m surprised at how well I have adapted emotionally to changes like cutting all of my hair off, and how normal I feel on “the good days”. I’m also surprised by how powerful the mental side effects like anticipatory nausea, taste and smell aversions, and phantom smells can be. I’m not sure if I’m lucky to find those to be some of the most difficult to manage side effects, or if they really are truly awful.

More than anything, I am tremendously grateful – to my doctors for finding the cancer at an early stage, to my workplace for the support and benefits I’ve received through this, to my family and friends, to my phenomenal oncology and clinical trial team, all the wonderful people at Cancer Care, and to my brain for allowing me to put aside my anxiety and use my energy in more useful ways.