The C-Word
Updated: Sep 26, 2022
I never really explained why I started this blog…
Aside from the cathartic reasons of just endlessly screaming into the ether, I wanted to build a platform where it’s okay to talk about “the C-Word”
What?! No, not that one! The other one! Pervert.
I mean Cancer.
I think the biggest thing that I had trouble with when I was first diagnosed was finding outlets where I can talk to someone who understood what I was going through. As I mentioned in my first post, the likelihood of someone in my age bracket (25-30) getting Chronic Lymphocytic Leukemia was very low.
According to the American Cancer Society:
Key Statistics for Chronic Lymphocytic Leukemia
The American Cancer Society’s estimates for leukemia in the United States for 2018 are:
About 60,300 new cases of leukemia and about 24,370 deaths from leukemia (all kinds)
About 20,940 new cases of chronic lymphocytic leukemia (CLL)
About 4,510 deaths from CLL
CLL accounts for about one-quarter of the new cases of leukemia. The average person’s lifetime risk of getting CLL is about 1 in 175 (0.57%). The risk is slightly higher in men than in women.
CLL mainly affects older adults. The average age at the time of diagnosis is around 70years. It’s rarely seen in people under age 40, and is extremely rare in children.
Visit the American Cancer Society’s Cancer Statistics Center for more key statistics.
I even joined reddit to see if they had anything on the forums about CLL and, to their credit, there is a subreddit (r/cll) that mostly shares all the new information and studies and current events relating to CLL. I’ve been very grateful for that — but even then, it’s hard to comprehend. A lot of the information presented are based on studies for the standard CLL patient demographic (above my age range) and the posts are typically patients 40+ or family members of patients.
Another huge reason, probably the biggest one of all, I needed to talk about it. I needed to write about it. I needed to scream into the ether. I know that cancer is a scary topic for most people but I think that’s because of the stigma surrounded by it. It’s understandable being faced with your mortality is terrifying — trust me, I know — but for me, keeping quiet about it doesn’t make it any easier. The anxiety of holding in my emotions for the past couple of weeks while trying to decide if I should go along with the procedure was unbearable and it made me unbearable.
In my mind I want to believe that this must be why I was diagnosed. I have to believe that this must be it. This must be my purpose: to incite a bigger discussion, to talk about cancer, to spread awareness for causes like Livestrong and the Leukemia and Lymphoma Society, and to give as much of me as I can to research. I have signed up for every possible medical research option that has been presented to me. Take extra blood, extra marrow, extra oocytes, extra everything. Figure this out. Find a cure. If not for me, then for someone else like me who will be facing this too. Because hearing “there’s only treatment, but at the moment there is no cure. You will go into remission, but eventually this can, and likely will, come back” is one of the most terrifying things anyone can hear and it is unacceptable.