My Diagnosis Story

My family has had a lot of cancer. My Mom, Dad, both sets of grandparents, and an aunt have all had a type of cancer. So I knew one day I’d get it too, I just thought I’d be much older.

There were signs

I complained about being tired a LOT. I would get chastised for it. “You slept so long last night and had a nap you shouldn’t be tired!” “You’re so young, what do you have to be tired about?”

I also had raised red bumps on my face. One, in particular, was on my nose. It grew until it looked like a witch’s wart. But what really got me wondering. It wasn’t until I went to get my wisdom teeth out. I was about 22 years old. I had the surgery but there was one hole that just wasn’t healing. I had to get my jaw cleaned out, down to the bone at least twice to make sure it wouldn’t get infected and I wouldn’t lose my jaw.

My doctor felt so bad, he thought he was doing something wrong. Then I asked, “If I have cancer, is it possible that that's why I’m not healing properly?” He said it was a possibility. So I went to get a biopsy.

The biopsy came back as cancer

I had a dermatologist look at it. He told me it could just be acne. I knew that wasn’t it. I had a lot of acne as a teenager. This wasn’t that, or normal.

The biopsy came back as cancerous. I got in the car with my mom and laughed because, what the f***, this was really early. I thought I’d be at least in my 80’s before I had it.

Then I started to cry later. I had just started talking to a guy that I liked and I thought he might drop me because of this. Priorities right?

What next?

I shared the news with my friends. I actually don’t remember a lot from that point.

I do remember my best friend saying something about “Well now we know why you’re always so tired. You’ve been saying that for a long time.” The validation was welcomed.

Treatment difficulties

I started infusions shortly after and realized very quickly that I was allergic to rituximab and rocephin. Still to this day the only things that I’m allergic to and two of the main medications that I needed every time I relapsed, of course. The infusions helped make the bumps go away, but only for a short time.

We didn’t know a lot about what was going on, so I didn’t get a lot of treatment in the beginning. I don’t even know if we knew what type it was until after I moved to Texas.

I didn’t even know it was technically blood cancer until years later. I thought it was technically skin cancer.

After I moved to Texas to go to school (and date the guy from earlier who is now ironically my ex and one of my best friends Hey Jordan) I started getting treated at MD Anderson. I had infusions one more time and radiation. That worked for about 5-6 months before it came back one more time and I had to get more radiation and chemotherapy.

Finally a correct diagnosis

The bumps had come back the second time, but then the last time only one of my lymph nodes was enlarged. I had initially had non-Hodgkin lymphoma but it mutated into large B cell lymphoma.

I had so many doctors at MDA. I think I was about 2-3 months in when one of my other doctors told me I had blood cancer and actually took the time to explain and even draw me a diagram of what was happening inside me. I will always be grateful to him for treating me like a person and not a number.

But in a nutshell that’s how I found out. I’m working to get to that 5 year mark and I can’t wait until I hit it!

Warm wishes, KatelynnConnect with others in the Forum: What blood cancer was your diagnosis?