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On April 1, 2016, I received an urgent referral notice from my primary care provider to a breast cancer center with an ICD 10 code. I googled the diagnostic code while at work and found out that I had invasive ductal carcinoma, a type of breast cancer. Unfortunately this was not a bad April Fool’s Joke. Instead I learned that at the age of 29 I would need to spend the next year going through chemotherapy, radiation, and surgery to hopefully get rid of my cancer while all my friends were getting married, buying homes, having children, and traveling the world.
As I reflect on the past five years since my diagnosis, I am filled with an incredible sense of gratitude. Don’t get me wrong, I am not thankful for my cancer diagnosis and don’t think I will ever be. It brought grief, pain, and fear into my life. Every ache I feel is now something I worry might be a recurrence or metastasis. I am not sure if I can ever have children of my own because of the chemotherapy. But when I look back, I see the incredible joy and endless adventure that being part of a community of young adult cancer thrivers and survivors has filled my life with over the past five years.
During treatment, people SHOWED UP in ways I never expected or dreamed of – from sending cards and gifts to visiting me and being there during each treatment appointment. But what quickly began to stand out most was how other young adult cancer survivors and thrivers started showing up for me even when I barely knew them. I met someone at a Young Survival Coalition happy hour who accompanied me to my next chemo appointment because she had the same oncologist as me and did not want me to be alone during treatment. A friend I met during a support group gave me all her head scarves and checked in on me regularly. When my dad was diagnosed with colon cancer the year after my treatment, it was a First Descents friend who sent my family food while he was in the hospital. They knew exactly what I needed before I even did because they had been there before. It is sometimes hard to believe that a group of people I didn’t know before this all started took care of and supported me more than even some of my childhood friends.
I would be lying if I said that being part of a cancer community doesn’t have its challenges. It can be incredibly painful because too often it means you fall in love with people you will lose far sooner than you ever wanted to. But each person in this community has taught me how to truly how to live. This community has reminded me that nothing is promised and we don’t know how much time we have, so we have to appreciate and enjoy each day. They have reminded me that each day is not necessarily good and can often be hard, but there is so much good and beauty in each day especially when we look for it. I think about each friend I have lost often and try to honor them by embodying their traits as much as I can. Their warmth. Their generosity. Their goofiness. Their love of life.
There is also something incredible about being part of a community that truly gets you. I love being able to share what I am going through and not have to sugar coat it. My cancer community is always there when I want to talk about topics like boobs, or to listen when I cry because I am afraid of upcoming scans. My partner, friends, and family are so amazing and supportive, but it is just different and honestly magical talking to someone who really understands what you are going through because they have been there before and/or are going through the same thing.
One of the most important communities I have developed is my local Charlotte, North Carolina First Descents family. Having a local network of young adult cancer survivors and thrivers to connect and adventure with has provided an ongoing support system after my week-long program. It’s been the perfect way to maintain the FD magic since my week-long program.
My FD community in the Southeast meets regularly, and FD alumni were actually my first friends when I moved to North Carolina three years ago. Before the pandemic, we had weekly climbing meetups, went kayaking, hiking, and had potlucks. During COVID, we continue to meet monthly virtually. We have had cooking classes with Chef’s Nemo and Uncle Buck, a pumpkin painting party, a gardening class, a holiday gift exchange, game nights, and a virtual hike. We even organized a team to do the Out Living It Relay last year. I know that although we can’t see each other in person, they are always there for me and being able to check in regularly has been a lifesaver during the past year of isolation and quarantine.
As I look back on the past five years since my life changed in an instant with my breast cancer diagnosis, I am filled with amazing memories of adventure and a community that is better than anything I could have dreamed of. I think about whitewater kayaking on the Rogue River in Oregon during my weeklong program, volunteering at the FD ball, rafting in Costa Rica on an FDX, mountain biking and rock climbing in Western North Carolina, climbing dates and weekly hikes with my local FD Family. My community will always be so much stronger than my cancer. Even though I hate that we had to get here through a serious illness, I am so thankful every day to be part of this family.
This week is all about raising awareness of the unique challenges that the AYA Cancer Community face every day. Over 89,500 AYAs will be diagnosed this year in the US. So to spread awareness,