In 2017, I was diagnosed with anaplastic large cell lymphoma. It was a shock. I immediately started my first of six rounds of chemotherapy. Every month, I would have to go inpatient for one week for treatment. Unfortunately, I relapsed two months after completing that. I then got a second opinion and did two clinical trials, and when those failed, I went on to Memorial Sloan Kettering (MSK) in New York. One trial failed, but the next finally got me to remission, allowing me to get a transplant.
Having a Transplant at the Epicenter of it All – New York
I was nervous for the transplant. New York City is a long way from home in St. Louis. I would have to stay in the city for 100 days after my transplant, which was on January 29, 2020. After transplant day, things were going well. I got out of the hospital quickly and moved into the American Cancer Society Hope Lodge. I was able to start the healing and recovery process. At the time, I was able to go out for walks in the city and go shopping in some nearby stores.
That, and frankly the world, changed in early March. Covid-19 was spreading and it made me quite scared to go out. After all, my immune system was completely taken down and is currently in full rebuild. Soon, the first case was identified in the city. Public officials tried to assure us that the cases were isolated and things would be ok. That was not the case though. It didn’t take long for cases to skyrocket in such a densely populated city. Soon after, the streets began to empty and the busy city quieted. It was very eerie and scary.
Where to Recover When Chaos Closes Everything Down
As things got worse, things got stricter at the hospital, where I ended up because I started having issues with my stomach. While no visitors were allowed there, thankfully my mom was still allowed to visit me during that time. The cases in the city were getting so bad that the Hope Lodge decided to close. It was stressful because we needed somewhere to stay.
My stepdad had to drive from St. Louis to get my mom into a hotel while I was getting out of the hospital. I was supposed to go back to my dad’s house in New Jersey, but there was a problem. He was exposed to the virus and had to quarantine for 14 days. After a couple days in a hotel, I was able to get to my dad’s house and settle, but I was determined to get back to St. Louis. By this time, I had been away from home for almost two years getting treatment. I wasn’t sure how I was going to do it, but thankfully I reached out to Corporate Angels and they were able to get me a flight home on a private jet.
Feeling Isolated While Isolating
These times have been hectic and anxiety inducing, and the worst part has been the isolation, but I have found ways to cope during these crazy times. It is hard to stay calm and collected but staying busy and distracted helps a lot. I found that I just had to push myself even when I wasn’t motivated. Talking to others also helps a ton, whether it is with friends or family.
6 Tips for Navigating These Uncertain Times
If you are currently fighting cancer, in remission or a survivor, here are my tips for getting through these uncertain times:
- Stay connected with friends. I use an app called Houseparty. You can talk and play games with friends or family.
- Connect with other cancer survivors, because they are easier to relate to sometimes. There are tons of groups that offer support and fun activities. Lacuna Loft is my favorite group. They host crafting, hangouts, book club, writing and so much more online for teen and young adult survivors. Check with your hospital for resources as well.
- Get involved with a worthy cause. I support the St. Baldrick’s Foundation because they are the largest private funder of childhood cancer research grants. There are so many ways to get involved while also social distancing, like starting a Facebook Fundraiser, shaving your head virtually, or donating directly on their website. Kids with cancer need our help now, more than ever.
- Pick up a new hobby. I like crocheting, paint by diamond, and latch hook. There are tons of hobbies out there and YouTube can teach you anything!
- Get outside and stay active. Exercise can really help improve your mood and it is good for healing!
- Talk to a therapist if you need to. I did, and I learned a lot of good ways to deal with stress and anxiety. Meditation and journaling are some good ones.
I hope these tips are helpful. Stay safe, stay home or wear a mask out. Things will get better eventually. They always do!
Help Fund Childhood Cancer Research During These Uncertain Times
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